We finally received the test results this week that the doctors needed to begin discussing a game plan of treatment for Todd. I was getting anxious to know the preliminary bone marrow biopsy results, so I called Dr. Hamilton's office at the Cleveland Clinic on Tuesday, September 13, 2016, to ask if she had got them back from the lab yet . They are usually back the following Friday or Monday after the biopsy on Wednesday. I was told that the labs had been running behind, but they would check with Dr. Hamilton. She called me around 12:00 that afternoon with the news: His blasts counts were up to 8%. Not the news we wanted to hear. I was glad they weren't higher, but disappointed they had jumped from <1% in July to 8% now! The air conditioning in our office had been out; it was about 80 degrees in there. So, when I got this news, I had to sit down. I felt dizzy and faint. I was already overheated, needed to eat, and then got this news. I was shaken.
I asked the doctor if she thought the blast counts would continue to jump up that much again (desperate question), but she of course she wasn't sure what they would do, but she tried to reassure me that she didn't think they would skyrocket past the 20% criteria classification of Acute Myeloid Leukemia (AML), but there are no guarantees with cancer. She said that these results confirmed what we all had suspected: the cancer was no longer responding to the AG221. I had asked her at the last appointment if it was possible that the drug could still keep his blast counts down even though there was no hematological response in the blood counts. She said, it was possible, but she didn't think it was likely, nor did she think that it would help him to continue taking it for that hope only. It wouldn't make that much of a difference. So, the biopsy results confirmed this: continuing the drug was not keeping the blast counts down anymore either.
At this point in the day, she still had not received the genetic panel results back from the specialty lab. She still wanted to wait until she got these back and spoke with a few colleagues before making a treatment recommendation. She also said that they were still waiting to hear back from Celgene, the drug company of the medication Revlimid, regarding an estimate of how much we would have to pay for the drug under our current insurance. I brought up the option of Vidaza, which Todd has been on before to reduce the blast cells, and she confirmed that this may still be an option.
Dr. Hamilton asked me if I wanted to tell Todd the biopsy results or if I wanted her to call him. I was very busy at work, and wanted Todd to have the opportunity to ask any questions or discuss any concerns with her; so she called him and gave him the news. We had a chance to talk on my lunch break and he said the blast counts being at 8% was about what he expected. He was surprised it wasn't worse. I tried to encourage him; we still had options and there is a team of doctors working on getting a new treatment regimen together for him. We would go or do whatever it takes!
He had been extremely tired since his last transfusion of one unit of blood at the Cleveland Clinic last Wednesday, September 7, 2016. This week's appointment on September 14, was at the local oncologist's office for a CBC to see if he needed a transfusion. I knew he was weak, but he refused a wheelchair and walked in on his own. By the time we got back to the treatment area, he felt like he was going to pass out. They hurried and got him into a bed and covered him with warm blankets and placed a cool washcloth on his forehead while they prepped his port for the blood draw. I got him a Boost shake to drink, because he still hasn't had much of an appetite. While waiting for the CBC results to come back, I called Sam, the trial nurse at Cleveland Clinic to see if they had received word from the genetic mutation panel because the local oncologist had told Todd that they received them the day before.
Cleveland had received the results, but they were so vague that no one really understood them. Dr. Hamilton had called and asked the pathologist to explain them to her. Of course, he hadn't called her back yet. The results looked positive for the IDH2 mutation, which he had prior to treatment with AG221, but they were not sure about the IDH1 mutation. We started discussing the trial of AG881 in New York, that Dr. Eytan Stein had mentioned. Originally, I thought Todd needed to have both mutations before he met the criteria for the trial, however, after researching, it only needed to be one or both. Todd has read a lot about the drug and the drug company AGIOS. From his understanding AG881 was only a combination of AG221 for IDH2 and AG120 for IDH1. If he didn't have the IDH1, the AG881 would be worthless, since we knew his cancer had stopped responding to the AG221. This dashed my hopes of this trial. I found out later anyway, that he DID NOT HAVE the IDH1 genetic mutation, so this option was seemed out.
Once we got the CBC results back, it was easy to understand why Todd was feeling so weak. His hemoglobin had gone from 8.3 plus one unit of blood last Wednesday to 6.8 this Wednesday! At first the nurse said his hemoglobin was 6.2 and his platelets were in the teens. She said the doctor wanted to know if he wanted 1 unit or 2 units of blood. We both freaked out and said 2! Of course! This was the lowest his hemoglobin has been in over a year! I don't know if it was that low when he was in the hospital last October with the pneumonia! They usually always give him 2 units if the hemoglobin is below 8. Todd and I began to question what she had told us. Maybe she had made a mistake. Maybe the hemoglobin was at 8.2 not 6.2, then the question of only giving one unit for being under 8.5 would make sense. So I asked her to double check the results. We looked at the printed results together. The hemoglobin was 6.8, platelets at 13,000, whites at 1.2 and ANCs at .6!!! Every time I see such low numbers, I can't stop the expletive that comes out of mouth in disbelief and anger. There was no denying it. These numbers sucked.
When we told Todd the actual numbers, he was in disbelief too. He began to worry that if his counts were this bad, his blast counts in the marrow had probably increased too. I wheeled him down to Universal Care and they got him in a room right away. The nurses there are so awesome! They really care about the patient and the family. They always take my phone number so that when I leave to go into work, they can contact me with any changes or concerns. We've been pretty happy with his care at Soin Medical Center. They are always worried about how long it takes Todd to get the blood products and the transfusion process, but we have always understood that it takes time and don't mind the wait at all. We always get out of the hospital faster than they predict. This day, Todd was finished by 6:00 p.m. I was happy that our daughter Abby was able to come sit with him in his room to help pass the time. It is hard for me to go into work while he is there, but I know he is in good hands and that I can be there in about 20 minutes if I'm needed. If anyone would like to come sit with him during the transfusion process, it would be appreciated. In the future, however, they want him to come in a day early to get his CBC and type and screen and then have the transfusions scheduled for the next day so that they can order the blood products ahead of time and shorten his wait time. I'm not sure if this is really that helpful because he will have to get up early and go to the hospital two days instead of one, but we are willing to try it.
NEWS FLASH:
This is how fast and stressful everything changes. While typing this post, I received a call from his transplant doctor, Dr. Hamilton, who finally had her recommendation for treatment to discuss with me. She had already talked to Todd, but I always have a lot of questions to ask, so she graciously reaches out to me. She had discussed Todd's case with the other doctors in the Leukemia/Oncology/Transplant area, her colleagues at University Hospitals in Cleveland, and Dr. Eytan Stein at Memorial Sloan Kettering in New York City.
I was shocked to learn that her recommendation was the AG881 Drug Trial at Memorial Sloan Kettering. I thought this option was OUT! Apparently, this drug is not what we thought it was, instead, it is a "souped-up, second generation"version of the AG221 he was on. I was leaning toward the tried and proven treatments or "standard of care" treatments already available (i.e Revlimid and Vidaza) before hearing this. When I brought this up, she said that although Todd had seen some response to Vidaza in the past, it didn't help much the last time he was on it after his failed transplant. It lowered his blast count some, but it did not help with this blood counts at all. Therefore, she really didn't consider this a "positive response" to the drug. With Revlimid, we are limited to it helping the anemia or Red Blood cells only. Todd's other counts are already dangerously low, and this drug is known to lower platelets, which he cannot afford to have happen since they are already so low he has to get platelet transfusions.
She didn't know much about how AG881 worked or what it contained, but recommended we consult with Dr. Stein. In her opinion, this is the best option to help increase all three blood counts increase and decrease the blast counts. We discussed that the treatment options are getting thin. Her colleagues at University Hospital suggested a second transplant, which Dr. Hamilton feels is still an option we really need to seriously consider. I told her that I couldn't speak for Todd completely, but that in general we did not consider this a good option; instead, we consider this a last resort after we have exhausted all other options. I told her I didn't know if we were ready to go the the "hell" that a transplant inflicts. I told her that personally, I found the option scary. Not only did it not have a high success rate, but if it did work, then Todd would have to face the possibility of getting Graft v. Host Disease that could be detrimental. She reiterated that this is the ONLY CURATIVE OPTION. That every other option is just temporary. They would obviously use a different donor, but I wasn't impressed with the long-term success rates of bone marrow transplants. I guess we just need to be careful not to wait too long to take this option; he needs to be healthy enough for a transplant.
This news, that we would have to go to New York, was not upsetting in itself. However, I called Todd back after my conversation with Dr. Hamilton, and his mind was racing ahead of all the implications and changes in our lives that would be necessary to pursue this trial treatment. This would mean extensive travel: every week for the first month, then every two weeks thereafter. We would need resources to go and he would need me to go with him. My ability to work full-time could be in jeopardy, which means keeping our house would be impossible. I didn't want to jump too far ahead, and I think we would be smart just to take things a day or week at a time. We really need to speak with Dr. Stein to see how feasible getting on the study would be.
Putting the house on the market again would be stressful. I'm not sure I can handle all the work involved. This time it would be definite; we would keep it on the market until it sold! I would need lots of help: cleaning out the house, getting rid of stuff we couldn't take with us, boxing up, keeping the house immaculately clean and ready to show, and then finding a new place, preferably one that would be move-in ready. This is when I broke down into tears. I know our house is often too much to take care of. I have been mowing the grass and doing almost all the cleaning. With Lewis back at college and Ellie back in school and sports, and Todd unable to get out of bed, most of the chores are left to me.
Please be in prayer for wisdom for us and the doctors. That travel arrangements would fall into place. I've already contacted the Corporate Angel Network about arranging a potential flight and the Hope Lodge in New York City to see if we could stay there instead of a hotel.
Todd's cough is getting worse and he is now limping. It seems like when his counts get low, certain areas get inflamed, and this time it is his foot again. He still doesn't have much of an appetite. The doctor said this was likely from the MDS itself. Getting him to eat regularly requires great effort. He has been trying to drink his Boost shakes when he can't bring himself to eat.
Thanks goes out to my parents who are a pillar of strength and help. My dad (age 69 with congestive heart failure!) has been helping me with yard work. Todd's mom is still bringing food, but even she is having a hard time walking. Pastor Chuck Moore at Hillside Chapel has been faithful in staying in touch and visiting Todd. Our neighbors Dan and Sharon have also been very supportive.
NEEDS: I hate this part, but we do have needs. We have a few dead trees in the yard that need to come down. Neither Todd nor my Dad are able to do this. If anyone can refer us to someone who could give us a reasonable rate to take these down, it would be greatly appreciated. I could really use some mulch in the front flower beds, if anyone has extra mulch or has the time to chip and shred our tree branches for mulch, that would be appreciated. I probably need to have a garage sale, which is a lot of work! I would have to do it on a Saturday when I am off work, but I might need help preparing for it.
Of course, I always worry about Todd being home all day alone. When I'm not there, he doesn't eat. It would be great if someone could tempt him by bringing food over and sitting with him for a short visit. He really doesn't feel like going out to eat, as he barely feels like getting out of the house at all.
He will have a CBC drawn at Soin on Monday, September 19, 2016, as they don't want to wait a full week this time to see if he needs a transfusion.
Also, on September 21, we will be celebrating our 25th Wedding Anniversary. I hate that he is so sick. The celebration will likely be low key at home. I'm just thankful he won't be in the hospital and that we made it successfully to such a significant milestone!
Thank you all for the love and support.
FOR MORE INFORMATION:
AG881 General Trial Information: https://clinicaltrials.gov/ct2/show/NCT02481154
AG881 Trial at Memorial Sloan Kettering: https://www.mskcc.org/cancer-care/clinical-trials/15-252
Success of AG221 (showing average response time of 15.7 months):
http://annonc.oxfordjournals.org/content/27/4/599
Showing posts with label Memorial Sloan Kettering Cancer Center. Show all posts
Showing posts with label Memorial Sloan Kettering Cancer Center. Show all posts
Friday, September 16, 2016
Sunday, January 24, 2016
January 2016 Begins Month 11 of Trial Drug AG221
It is hard to believe that as of this Wednesday, Todd will begin his 11th month on trial drug AG221. I was reading a news update on the drug (link here: http://www.nasdaq.com/press-release/agios-announces-data-from-ongoing-phase-12-trial-of-ag221-showing-durable-responses-in-patients-20151206-00039 ). It looks like they are continuing with additional trials this year for MDS patients in addition to AML patients. It looks like Todd is not the only one seeing some improvement. When you read the article Todd is one of the MDS patients having a response to the drug.
As we read the article, we were able to reflect on where he was a year ago! He was so weak and transfusion dependent. I was frustrated with the current rounds of chemotherapy (Vidaza). It is amazing that we know so much more about AG221 now than we did last year!
I'm so grateful to Dr Etyan Stein for his work on getting this trial information in the news and Agios for putting his presentation online where I was able to watch it and encourage Todd to go on it and fly to New York to see Dr. Stein at Sloan-Memorial Hospital in New York City.
Early in December, I did have a candid conversation with his Bone Marrow Transplant Doctor about the new research about the TP53 genetic mutation. This mutation is acquired and is usually what causes the cancer or disease. There has been some studies trying to determine whether patients with this TP53 mutation, don't respond well to transplants or are more resistant to therapy. She discussed how the TET2 mutation also is being studied in relation to patients who end up with a "poor prognosis" or at higher risk. I had learned about the TP53 mutation after reading a friend's blog about her son with Leukemia, who had relapsed after a bone marrow transplant, who is now relying on an alternative trial treatment that using T-cells. (Craun, November 2015). And, when reading the last issue of the MDS newsletter, there was an article about TP53 and its connection to a patient's prognosis who has this mutation. (MDS News, Fall 2015). I asked Todd's doctor if Todd had this mutation, and she knew the answer immediately: Yes, he did. If this research proves true, it would answer the nagging question of why Todd's bone marrow transplant failed. It would also be helpful in the decision to have a second transplant someday; if the evidence shows this mutation inhibits a successful transplant, we would likely eliminate that option in the future.
I'm so thankful that he has not suffered any of the severe adverse events or reactions to the drug. Even though he has suffered terrible nausea and high liver function counts, it has been tolerable.
I'm a bit disappointed that he has to have another bone marrow biopsy AGAIN this visit. The other tests are less invasive and they don't bother him as much. Hopefully, after he has been on the trial drug for 12 months, they will lessen the frequency of biopsies, although I have no assurance of this. We were assured though that at after 12 months, his trial study appointments at the Cleveland Clinic would change in frequency from every two weeks to only once a month! This will be great!
We said goodbye to Ashley, his primary trial nurse, who is leaving the program to take a nursing job back on the Leukemia floor. We will miss her, as she was there for us from the beginning and whenever we needed answers. We are confident that we will be in good hands with her replacement, Sam, who has been on the trial study team from the beginning too.
So, Todd will have a full run of tests this Wednesday, as he plugs along on AG221. We are curious to see how our new insurance, through the Affordable Care Act, works for us this year. The main focus now is to get him through Winter without getting sick. We haven't done much socially, and fear vacation travel at this point, but it would be nice to get away for a little bit over spring break.
A few concerns and prayer requests:
First, like I stated in the last post in December, we received paperwork from the Social Security Disability Board asking for detailed information in their review of his continued approval for benefits, which is beyond comprehension to me! I filled out about 10 pages of appointments, treatments, hospitalizations, transfusions, medications, etc. only to receive a second request form (8 pages) last week asking us to describe his daily functions in detail! I can't imagine how anyone could look at these papers and not determine his continued need. His health is so precarious, dependent on stable blood counts and staying completely healthy. We learned how quickly he health could change in October 2015 when he was hospitalized for a cold and pneumonia for 13 days! As this is our only source of income right now, we are desperate that it continues. I don't understand how he was a productive citizen and paid the maximum into the system for years, and then we he needs it, they have to challenge it!
Second, speaking of income, I still haven't found a full time job. I graduated with my MLIS in December 2015, only to be let down by what little value these credentials are in obtaining a position. I apply weekly for jobs, and try to do something productive everyday in the job search. I have several applications pending at UD right now, but everything else I have applied for has not produced any offers. I am also actively seeking volunteer experience and trying to schedule to attend several professional organizational meetings, but these have also been in limbo. If you know of anyone who is hiring, even outside the field, please let me know! I have applied for positions outside of field, and one of those applications is still pending. It is not always what you know but rather who you know that helps land that job!
We took the house off the market for the holidays, as we needed a break from showing it and our listing had been on the market too long for serious offers. We will likely put it back on the market in early March.
We appreciate all those who have sent Christmas cards, money, and gift cards, especially Beau Townsend Ford's Employee Christmas Club Fund and that of our friends and neighbors.
Right now, we are just trying to appreciate Todd's stability and giving God the praise for the blessings we have daily!
References:
Craun, Gina. November 24, 2015). Windshield Wipers. Cainan Craun. Caring Bridge. Blog. Retrieved from: http://www.caringbridge.org/visit/cainancraun/journal/view/id/56549676a589b45a417219e8
Prognostic Impact of TP53 Mutations. MDS News, Fall 2015,Vol. 21, Issue 2. page 11. Retrieved from: http://mds-foundation.org/wp-content/uploads/manual/2015fallnewsletter.pdf
We said goodbye to Ashley, his primary trial nurse, who is leaving the program to take a nursing job back on the Leukemia floor. We will miss her, as she was there for us from the beginning and whenever we needed answers. We are confident that we will be in good hands with her replacement, Sam, who has been on the trial study team from the beginning too.
So, Todd will have a full run of tests this Wednesday, as he plugs along on AG221. We are curious to see how our new insurance, through the Affordable Care Act, works for us this year. The main focus now is to get him through Winter without getting sick. We haven't done much socially, and fear vacation travel at this point, but it would be nice to get away for a little bit over spring break.
A few concerns and prayer requests:
First, like I stated in the last post in December, we received paperwork from the Social Security Disability Board asking for detailed information in their review of his continued approval for benefits, which is beyond comprehension to me! I filled out about 10 pages of appointments, treatments, hospitalizations, transfusions, medications, etc. only to receive a second request form (8 pages) last week asking us to describe his daily functions in detail! I can't imagine how anyone could look at these papers and not determine his continued need. His health is so precarious, dependent on stable blood counts and staying completely healthy. We learned how quickly he health could change in October 2015 when he was hospitalized for a cold and pneumonia for 13 days! As this is our only source of income right now, we are desperate that it continues. I don't understand how he was a productive citizen and paid the maximum into the system for years, and then we he needs it, they have to challenge it!
Second, speaking of income, I still haven't found a full time job. I graduated with my MLIS in December 2015, only to be let down by what little value these credentials are in obtaining a position. I apply weekly for jobs, and try to do something productive everyday in the job search. I have several applications pending at UD right now, but everything else I have applied for has not produced any offers. I am also actively seeking volunteer experience and trying to schedule to attend several professional organizational meetings, but these have also been in limbo. If you know of anyone who is hiring, even outside the field, please let me know! I have applied for positions outside of field, and one of those applications is still pending. It is not always what you know but rather who you know that helps land that job!
We took the house off the market for the holidays, as we needed a break from showing it and our listing had been on the market too long for serious offers. We will likely put it back on the market in early March.
We appreciate all those who have sent Christmas cards, money, and gift cards, especially Beau Townsend Ford's Employee Christmas Club Fund and that of our friends and neighbors.
Right now, we are just trying to appreciate Todd's stability and giving God the praise for the blessings we have daily!
References:
Craun, Gina. November 24, 2015). Windshield Wipers. Cainan Craun. Caring Bridge. Blog. Retrieved from: http://www.caringbridge.org/visit/cainancraun/journal/view/id/56549676a589b45a417219e8
Prognostic Impact of TP53 Mutations. MDS News, Fall 2015,Vol. 21, Issue 2. page 11. Retrieved from: http://mds-foundation.org/wp-content/uploads/manual/2015fallnewsletter.pdf
Thursday, April 2, 2015
Drug Study @ Cleveland Clinic begins April 13, 2015
The beginning of the week has been a pretty good one for Todd. On Monday, he went into see the local oncologist and to get his weekly CBC. He did not need a transfusion, with his Hemoglobin at 8.5 and Platelets at 56,000. His whites and ANCs were still dangerously low. The only concern the doctor discussed with Todd that day was about removing his Hickman central catheter, fearing a greater potential for developing an infection with it in. While we know this, we have always taken great care of it and have never experienced any problems with it.
We are not sure it was a good time to remove it just yet. Although the drug in study, AG221, is a pill, they will still need to hourly blood draws for 10 hours on certain days, which means ten less arm sticks! In addition, it makes it easier to get transfusions and weekly CBCs.
Dr. Stein from Memorial Sloan Kettering called us early Monday morning to me answering in a craggy voice! I had been suffering from sinus drainage and had almost lost my voice. He was concerned about Todd, but I assured him that Todd was fine! He said he had spoke to the Drug Company representatives who are setting up the trials and that they thought Cleveland might be ready in a week or two. He asked us to call our contacts at Cleveland to see how the process was going and when they expected to start. Todd told him we would call and get back to him. Todd called BMT doctor and left a message. We didn't hear back until after 5:00 pm that evening. She said she was trying to find out who the site investigator was and would get back to us. By late Tuesday afternoon, I still hadn't hear back from the BMT doctor. I called Dr. Stein and told him that we still hadn't heard anything from Cleveland. He found out who the site investigator was in the course of our conversation and said he would send him a message. Later that evening, the BMT called saying they were anticipating a department meeting on April 10 and then they would be up and running and able to start the drug study on April 13, 2015, if there were no problems. I relayed the message back to Dr. Stein's office and I asked about Todd's bone marrow biopsy results, but they were not back yet.
Todd was a bit anxious to hear about his biopsy results, and we finally heard back from Dr. Stein today with his results and we formulated a plan for beginning the trial study. First, the results: the bone marrow biopsy done in New York, as part of the screening process, showed that his blast cells had increased slightly to 5-8%. This was up some from his biopsy on February 18, 2015, when they were at 3%. We had expected this slight increase since Todd hasn't had any chemo since February. Once again, we were pleased that the count was not higher.
Second, we talked to Dr. Stein and received multiple messages from Todd's BMT doctor in Cleveland in regards to enrolling in the AG221 drug study at Cleveland Clinic beginning April 13, 2015. Dr. Stein was good with us switching locations and actually wanted us to do what would be easiest for us. They only real concern was getting the screening results and records transferred to Cleveland and actually being able to start the trial at Cleveland ON TIME.
The main concern at this point is the window of time Todd has open to get started on the drug. We only have 28 days from the screening date of March 24 until Todd starts the drug without having to re-do all the screening tests, which would be too much on Todd. So, that gives us until April 21, 2015, as the deadline for Todd to begin taking the drug. Todd's BMT doctor said she would out of town next week, but that she would have the trial study contact nurse stay in touch with us next week to let us know if everything was still on schedule, or if there are any problems. The drug company is to do an inspection and final approval on April 10. His BMT doctor asked us how soon we could get a flight to New York through The Corporate Angel Network, in the event that there would be a complication, and the drug study start date would get pushed back at Cleveland. In that case, we would have to go back to Memorial Sloan Kettering in New York to begin the first month of the study there.
In a way, we are still in limbo about where we need to go for the study. If, everything goes according to schedule, Todd will start the study at the Cleveland Clinic on April 13, 2015. If there is a problem, and Todd can't start the study at Cleveland that week, then we will be returning to New York (likely on April 20, 2015).
Several people have expressed their concerns about Todd returning to Cleveland, since we LOVE Memorial Sloan Kettering and can't praise Dr. Stein enough. Of course, we would rather see Dr. Stein and go to MSK, but Todd feels the traveling to New York and back so much that first month would be very taxing. I think driving to Cleveland three and half hours each way is more taxing than flying and driving in, but going to New York might require more overnight stays than Cleveland. This would be harder on the family in general too. I like Cleveland Clinic; they have been very good to us, don't get me wrong, but I really like Dr. Stein and Memorial Sloan Kettering.
If you have ever noticed, that up until this point, I have not used any of Todd's doctors' names just to be sensitive regarding anything negative I may say. Dr. Eytan Stein, however, I have introduced you to through the many articles and presentation he has done via posts on my blog in the past. It would have been hard to conceal his name, knowing the work he has done with this trial drug study. I'm so happy that I have nothing say but GOOD about him! This is the kind of doctor you thank God for. I believe that he serves God by serving mankind. You can tell he has a servant's heart with compassion for his patients and their families.
Todd's BMT doctor feels we should wait on getting rid of his Hickman catheter just yet. Once the trial gets started, we are going to re-visit the issue and there is a good chance that they will remove the Hickman and put in a port for the blood draws. This would require a lot less care (no daily flushing and weekly cap and dressing changes done by me) and it would be more comfortable for Todd in general. With it in, he can't get it wet not has he been able to sleep on his stomach since he had it put in last year. It would also take away an avenue for an infection to get in.
Tomorrow, Todd goes in to Miami Valley to see the Respiratory Therapist to get a breathing treatment of his Pentamidine. He may also go to the Cancer Center to have his blood counts checked to see if he needs a transfusion. Then, we are all going to our first all-family counseling session. I'm not sure if I like the psychologist just yet; time will tell.
I have spent most of this week cleaning up and decluttering the house, so we can get ready to put it on the market. I've also started typing up a selling sheet, as we intend to list our house for sale by owner. Please be in prayer for this entire process. It is stressful and a bit sad to know how much of our belongings will have be sold. I need to also plan a garage sale soon, so I can thin out the garages and some smaller items in the house. Truth be told, I will likely have to have a moving sale too, after we sell.
We are looking forward to spending Easter with our children and my parents. May God bless you as you celebrate Christ's Resurrection! And, to my Jewish friends, I wish a Blessed Passover. Thanking God for his grace day by day.
We are not sure it was a good time to remove it just yet. Although the drug in study, AG221, is a pill, they will still need to hourly blood draws for 10 hours on certain days, which means ten less arm sticks! In addition, it makes it easier to get transfusions and weekly CBCs.
Dr. Stein from Memorial Sloan Kettering called us early Monday morning to me answering in a craggy voice! I had been suffering from sinus drainage and had almost lost my voice. He was concerned about Todd, but I assured him that Todd was fine! He said he had spoke to the Drug Company representatives who are setting up the trials and that they thought Cleveland might be ready in a week or two. He asked us to call our contacts at Cleveland to see how the process was going and when they expected to start. Todd told him we would call and get back to him. Todd called BMT doctor and left a message. We didn't hear back until after 5:00 pm that evening. She said she was trying to find out who the site investigator was and would get back to us. By late Tuesday afternoon, I still hadn't hear back from the BMT doctor. I called Dr. Stein and told him that we still hadn't heard anything from Cleveland. He found out who the site investigator was in the course of our conversation and said he would send him a message. Later that evening, the BMT called saying they were anticipating a department meeting on April 10 and then they would be up and running and able to start the drug study on April 13, 2015, if there were no problems. I relayed the message back to Dr. Stein's office and I asked about Todd's bone marrow biopsy results, but they were not back yet.
Todd was a bit anxious to hear about his biopsy results, and we finally heard back from Dr. Stein today with his results and we formulated a plan for beginning the trial study. First, the results: the bone marrow biopsy done in New York, as part of the screening process, showed that his blast cells had increased slightly to 5-8%. This was up some from his biopsy on February 18, 2015, when they were at 3%. We had expected this slight increase since Todd hasn't had any chemo since February. Once again, we were pleased that the count was not higher.
Second, we talked to Dr. Stein and received multiple messages from Todd's BMT doctor in Cleveland in regards to enrolling in the AG221 drug study at Cleveland Clinic beginning April 13, 2015. Dr. Stein was good with us switching locations and actually wanted us to do what would be easiest for us. They only real concern was getting the screening results and records transferred to Cleveland and actually being able to start the trial at Cleveland ON TIME.
The main concern at this point is the window of time Todd has open to get started on the drug. We only have 28 days from the screening date of March 24 until Todd starts the drug without having to re-do all the screening tests, which would be too much on Todd. So, that gives us until April 21, 2015, as the deadline for Todd to begin taking the drug. Todd's BMT doctor said she would out of town next week, but that she would have the trial study contact nurse stay in touch with us next week to let us know if everything was still on schedule, or if there are any problems. The drug company is to do an inspection and final approval on April 10. His BMT doctor asked us how soon we could get a flight to New York through The Corporate Angel Network, in the event that there would be a complication, and the drug study start date would get pushed back at Cleveland. In that case, we would have to go back to Memorial Sloan Kettering in New York to begin the first month of the study there.
In a way, we are still in limbo about where we need to go for the study. If, everything goes according to schedule, Todd will start the study at the Cleveland Clinic on April 13, 2015. If there is a problem, and Todd can't start the study at Cleveland that week, then we will be returning to New York (likely on April 20, 2015).
Several people have expressed their concerns about Todd returning to Cleveland, since we LOVE Memorial Sloan Kettering and can't praise Dr. Stein enough. Of course, we would rather see Dr. Stein and go to MSK, but Todd feels the traveling to New York and back so much that first month would be very taxing. I think driving to Cleveland three and half hours each way is more taxing than flying and driving in, but going to New York might require more overnight stays than Cleveland. This would be harder on the family in general too. I like Cleveland Clinic; they have been very good to us, don't get me wrong, but I really like Dr. Stein and Memorial Sloan Kettering.
If you have ever noticed, that up until this point, I have not used any of Todd's doctors' names just to be sensitive regarding anything negative I may say. Dr. Eytan Stein, however, I have introduced you to through the many articles and presentation he has done via posts on my blog in the past. It would have been hard to conceal his name, knowing the work he has done with this trial drug study. I'm so happy that I have nothing say but GOOD about him! This is the kind of doctor you thank God for. I believe that he serves God by serving mankind. You can tell he has a servant's heart with compassion for his patients and their families.
Todd's BMT doctor feels we should wait on getting rid of his Hickman catheter just yet. Once the trial gets started, we are going to re-visit the issue and there is a good chance that they will remove the Hickman and put in a port for the blood draws. This would require a lot less care (no daily flushing and weekly cap and dressing changes done by me) and it would be more comfortable for Todd in general. With it in, he can't get it wet not has he been able to sleep on his stomach since he had it put in last year. It would also take away an avenue for an infection to get in.
Tomorrow, Todd goes in to Miami Valley to see the Respiratory Therapist to get a breathing treatment of his Pentamidine. He may also go to the Cancer Center to have his blood counts checked to see if he needs a transfusion. Then, we are all going to our first all-family counseling session. I'm not sure if I like the psychologist just yet; time will tell.
I have spent most of this week cleaning up and decluttering the house, so we can get ready to put it on the market. I've also started typing up a selling sheet, as we intend to list our house for sale by owner. Please be in prayer for this entire process. It is stressful and a bit sad to know how much of our belongings will have be sold. I need to also plan a garage sale soon, so I can thin out the garages and some smaller items in the house. Truth be told, I will likely have to have a moving sale too, after we sell.
We are looking forward to spending Easter with our children and my parents. May God bless you as you celebrate Christ's Resurrection! And, to my Jewish friends, I wish a Blessed Passover. Thanking God for his grace day by day.
Thursday, March 26, 2015
Day 2: Testing for Trial Drug AG221 in NY
We slept until about 9:00 am on Tuesday, March 24, 2015. We took our showers and strategized about where to eat at a good sit-down breakfast, but, before we could decide, Todd noticed that Dr. Stein's office had called and left a voice message for him to call them. He was told that he blood results showed his hemoglobin was low (7.0) and that he needed a transfusion. They wanted us to come in earlier than noon so they could work it into the schedule.
We grabbed some quick breakfast (muffin, coffee, juice, and yogurt) from the cafe in our hotel lobby and headed to the hospital around 10:30 am. First up, we had to go to get the type and screen to order blood for the transfusion. Then, we headed over to Dr. Stein's office, where we met with the doctor to sign the consent forms. Once signed, we were able to ask additional questions. I had just a few after yesterday's visit. I asked for his opinion on the use of chelation therapy to reduce iron in Todd's blood. He said, that he thought it interesting that local oncologists typically recommend it, but that he nor other oncologists/hematologists at larger cancer facilities do not. He said that the research shows that the use of chelation therapy has NOT been attributed to living longer, but has side effects, and for this reason, he doesn't recommend it.
I also asked about adding his Pentamidine treatments back in. Todd was getting this medication to help prevent a pneumonia caused by Pneumocystis jiroveci (carinii), but since we haven't been back to Cleveland, he didn't receive it this month. We had met with the pharmacist yesterday, before seeing Dr. Stein, to discuss all the medications and chemotherapy Todd has been on. It is important to document because using chemo or certain medications before the study or during the study, can disqualify him from the study. There was some question as to whether he could continue this medication or if he needed to switch to a similar drug in pill form. So, Dr. Stein clarified that he can have Pentamidine if it is inhaled only, which is what he has been doing. He recommended we have it set up to be done by Todd's local oncologist. I noticed though that they had it set up there at Sloan Kettering for next week just in case.
After finishing with Dr. Stein, we were reunited with his research assistant, who asked Todd some questions about his current symptoms, to use as a baseline for comparison after treatment of the drug begins. Then, another assistant, took us under her wing and let us know she would be there to guide us through the day's schedule. First up, was the echo cardiogram and EKG. Next, we tried to fit in the blood transfusion, but he had to go get the bone marrow biopsy next. It was probably after 4:00 p.m. before he could settle in for the transfusion. I ran down and got us some "lunch" at the cafeteria. Their procedures for transfusions are a bit different from anywhere we had been. They wouldn't run the transfusion IV at full pump speed (240) after the initial 15 minutes. The nurse said that since Todd was a new patient, they were being cautious and might have been able to run it at 200 if he had been there before, but that they never go over that. So, running the blood at a speed of 175, it took about an hour longer than normal, or 2 1/2 hours for one unit. At first, they were only going to give him one unit. Apparently, that is the new standard unless the patient is lower than 7, but we argued that in all the times he had transfusions, he had never received just one unit. So, the nurse called Dr. Stein and he approved the second unit. He was concerned about Todd's oxygen levels in his blood, since he would be flying the next morning.
Todd didn't finish getting both units of blood until 9:00 p.m. Once again, we got take out and ate it in our room. It was another long day, but Todd was feeling better. We went straight to bed, because we had to be at our shuttle stop at 7:00 a.m. the next morning. Everything went according to the schedule the Corporate Angel Network set up for us. We arrived at Teterboro airport and flew out around 8:45 a.m. and landed in Columbus, Ohio around 10:15 a.m. We had to drive back towards home to go to two appointments, one at noon and the other at 3:00 p.m., so Todd could get his IV antibiotic treatment at the Cancer Center.
We wanted to thank everyone who helped us with the trip: The Corporate Angel Network and their generous participating companies and Beau Townsend Ford, (especially Jamie, Chris, and Kevin) who paid for our hotel stay both nights and helped with medical bills that were not covered until we reached our deductible.
What to expect next:
We are expecting to hear from Dr. Stein's office by this Friday, March 27, or Monday, March 30, 2015 to hear if Todd was approved. His test results have to be examined and his case brought before the drug company's board and the Sloan-Kettering's board. Once we get the call, we will return to New York next week, either Monday, March 30, or Thursday, April 2. We will need some time to arrange flights, rides, and hotels. We will need to return to Memorial Sloan once a week for the first month and then only twice per month or every 15 days after that. We hope that the Cleveland Clinic will be an approved study location by then, so we can transfer his case study there, which would just require two trips up to Cleveland.
Locally, he will finish out the last few days of his IV antibiotic treatments and then he is scheduled to see the local oncologist on Monday, March 30, if we are not going to New York. They will also run a CBC to see how his counts are and order any transfusions if necessary.
Other news:
It was interesting that I was exploring reasons for Todd developing his MDS a few blogs ago, when the MDS Foundation posted a talk regarding this exact subject: http://www.onclive.com/onclive-tv/Dr-Komrokji-on-MDS-Risk-Factors-and-Preventative-Measures While it is hard to hear everything the doctor is saying, because of his accent, the basics of his talk is written out. So far, it would appear that smoking cigarettes is one of the main causes of new cases of MDS, because of the benzene contained in them. (Todd has never smoked though). If you are a smoker, can I beg you to find a way to stop? I have watched three grandparents die from smoking related diseases and cancer. There is so much proven research out there that shows that smoking causes multiple types of of cancer.
They also know that prior chemotherapies can also lead to MDS (like Robin Roberts from Good Morning America who had breast cancer first, and developed MDS from chemotherapy treatment).
I have finished my semester classes, which will give me more time to work, care for Todd, and get our house ready to sell. While I dread the idea of selling our house, knowing how traumatic and challenging it is going to be, we just can't afford to stay here. If anyone is willing to help us do some house repairs or box-up things to move, sell, or donate, please let me know via email, Facebook message, or phone call. We will also be looking for a 3-bedroom place in Beavercreek, OH to rent, if anyone knows of a suitable place.
In addition, I have stopped looking for a full-time job right now, but I will be substitute teaching until the end of May. I may look for something else part-time after school lets out. It is really hard to plan anything as we seem to be living day by day or week by week. But, both of the older girls are looking for summer jobs, if anyone can offer them something.
Thanks to everyone who has helped us with meals, rides for the girls, and I even received a gift card for a message, which I had asked for! We appreciate your love and support.
I also asked about adding his Pentamidine treatments back in. Todd was getting this medication to help prevent a pneumonia caused by Pneumocystis jiroveci (carinii), but since we haven't been back to Cleveland, he didn't receive it this month. We had met with the pharmacist yesterday, before seeing Dr. Stein, to discuss all the medications and chemotherapy Todd has been on. It is important to document because using chemo or certain medications before the study or during the study, can disqualify him from the study. There was some question as to whether he could continue this medication or if he needed to switch to a similar drug in pill form. So, Dr. Stein clarified that he can have Pentamidine if it is inhaled only, which is what he has been doing. He recommended we have it set up to be done by Todd's local oncologist. I noticed though that they had it set up there at Sloan Kettering for next week just in case.
After finishing with Dr. Stein, we were reunited with his research assistant, who asked Todd some questions about his current symptoms, to use as a baseline for comparison after treatment of the drug begins. Then, another assistant, took us under her wing and let us know she would be there to guide us through the day's schedule. First up, was the echo cardiogram and EKG. Next, we tried to fit in the blood transfusion, but he had to go get the bone marrow biopsy next. It was probably after 4:00 p.m. before he could settle in for the transfusion. I ran down and got us some "lunch" at the cafeteria. Their procedures for transfusions are a bit different from anywhere we had been. They wouldn't run the transfusion IV at full pump speed (240) after the initial 15 minutes. The nurse said that since Todd was a new patient, they were being cautious and might have been able to run it at 200 if he had been there before, but that they never go over that. So, running the blood at a speed of 175, it took about an hour longer than normal, or 2 1/2 hours for one unit. At first, they were only going to give him one unit. Apparently, that is the new standard unless the patient is lower than 7, but we argued that in all the times he had transfusions, he had never received just one unit. So, the nurse called Dr. Stein and he approved the second unit. He was concerned about Todd's oxygen levels in his blood, since he would be flying the next morning.
Todd didn't finish getting both units of blood until 9:00 p.m. Once again, we got take out and ate it in our room. It was another long day, but Todd was feeling better. We went straight to bed, because we had to be at our shuttle stop at 7:00 a.m. the next morning. Everything went according to the schedule the Corporate Angel Network set up for us. We arrived at Teterboro airport and flew out around 8:45 a.m. and landed in Columbus, Ohio around 10:15 a.m. We had to drive back towards home to go to two appointments, one at noon and the other at 3:00 p.m., so Todd could get his IV antibiotic treatment at the Cancer Center.
We wanted to thank everyone who helped us with the trip: The Corporate Angel Network and their generous participating companies and Beau Townsend Ford, (especially Jamie, Chris, and Kevin) who paid for our hotel stay both nights and helped with medical bills that were not covered until we reached our deductible.
What to expect next:
We are expecting to hear from Dr. Stein's office by this Friday, March 27, or Monday, March 30, 2015 to hear if Todd was approved. His test results have to be examined and his case brought before the drug company's board and the Sloan-Kettering's board. Once we get the call, we will return to New York next week, either Monday, March 30, or Thursday, April 2. We will need some time to arrange flights, rides, and hotels. We will need to return to Memorial Sloan once a week for the first month and then only twice per month or every 15 days after that. We hope that the Cleveland Clinic will be an approved study location by then, so we can transfer his case study there, which would just require two trips up to Cleveland.
Locally, he will finish out the last few days of his IV antibiotic treatments and then he is scheduled to see the local oncologist on Monday, March 30, if we are not going to New York. They will also run a CBC to see how his counts are and order any transfusions if necessary.
Other news:
It was interesting that I was exploring reasons for Todd developing his MDS a few blogs ago, when the MDS Foundation posted a talk regarding this exact subject: http://www.onclive.com/onclive-tv/Dr-Komrokji-on-MDS-Risk-Factors-and-Preventative-Measures While it is hard to hear everything the doctor is saying, because of his accent, the basics of his talk is written out. So far, it would appear that smoking cigarettes is one of the main causes of new cases of MDS, because of the benzene contained in them. (Todd has never smoked though). If you are a smoker, can I beg you to find a way to stop? I have watched three grandparents die from smoking related diseases and cancer. There is so much proven research out there that shows that smoking causes multiple types of of cancer.
They also know that prior chemotherapies can also lead to MDS (like Robin Roberts from Good Morning America who had breast cancer first, and developed MDS from chemotherapy treatment).
I have finished my semester classes, which will give me more time to work, care for Todd, and get our house ready to sell. While I dread the idea of selling our house, knowing how traumatic and challenging it is going to be, we just can't afford to stay here. If anyone is willing to help us do some house repairs or box-up things to move, sell, or donate, please let me know via email, Facebook message, or phone call. We will also be looking for a 3-bedroom place in Beavercreek, OH to rent, if anyone knows of a suitable place.
In addition, I have stopped looking for a full-time job right now, but I will be substitute teaching until the end of May. I may look for something else part-time after school lets out. It is really hard to plan anything as we seem to be living day by day or week by week. But, both of the older girls are looking for summer jobs, if anyone can offer them something.
Thanks to everyone who has helped us with meals, rides for the girls, and I even received a gift card for a message, which I had asked for! We appreciate your love and support.
Sunday, March 8, 2015
Pursuing a Second Opinion while tranfusions continue
The oncologist appointment was uneventful. We were happy that Todd's counts were high enough not to need any transfusions that day! The oncologist just wanted us to update him on what the doctors at the Cleveland Clinic had suggested for Todd's next step in treatment. He was unaware of the trial study drug AG-221, but after describing how it has worked so far, he was optimistic that this was a good choice.
When Todd was getting his blood drawn by his regular nurse, she was anxious to hear the latest recommendations too. We told her their decision, to pursue the trial drug study, and she began to tell us about a friend who too was proactive about researching her disease and possible treatments and had great success with a second opinion and treatment at Memorial Sloan Kettering Cancer Center in New York. She also told us about a free flight program for cancer patients that took her friend to New York for treatment. We brought this up to the oncologist and he told us that this was true. The program uses corporate jets who are flying company executives to New York on business by offering cancer patients empty seats on their flight. I went home and looked this up; actually there are several programs, but the one that his doctor and nurse were referring to is called Corporate Angel Network.
I found this program along with the others on the Memorial Sloan Kettering Cancer Center's website under: Air Travel Assistance. I have sent them an email and we are awaiting a response.
On Thursday, Todd had contacted his BMT doctor at the Cleveland Clinic to see if the other bone marrow results were in yet (including the much needed confirmation of the IDH2 gene mutation required for the study). He received a message back saying that they had NOT come back yet and that the trail study in Nashville was not at Vanderbilt, but some research hospital there. (I kinda guessed this when I was unable to find any information on Vanderbilt's website; and in Chicago, I could only find the study at Northwestern University). So, this dashed my hopes of getting an expert second opinion at Vanderbilt.
Todd had to go back to the Dayton Cancer Center on Friday, to have his blood counts checked again. It confirmed what we already knew, he needed a transfusion. Wednesday and Thursday had become increasingly draining for Todd and by Thursday afternoon, Todd didn't get out of bed. His red count was just below the threshold at 7.9 and his ANCs and white counts were almost non-existent. His platelets were up though around 56,000. By this time of the day, almost noon on a Friday, the cancer center was NOT able to get Todd into the Advanced Treatment Area for a transfusion at either hospital: Miami Valley or Miami Valley South. The only way for him to get his transfusion that day was to be temporarily admitted and put into a regular hospital room on the oncology floor. Todd resisted this idea, and tried to side-step it once we got to the hospital, but they only sent us to admission and registration anyway. We both knew it was going to be a long day, but I have come to accept this. I purposely did not plan on accepting any sub jobs for the day, anticipating this. I tried to reassure him that he was just going to have to suck it up and wait. What was the alternative? He would have maybe been able to get a type and screen done that day, and come back the next morning, but that would still end up taking at least five hours or more. Plus, he would have been in bed the rest of the day Friday feeling so weak and tired, with no relief. At least he could make himself comfortable, order dinner from the hospital menu, and get his transfusion done so he could start feeling better the next day. After his transfusion, he felt extremely hot to me, and he did have a low grade fever of 99.9, which I was concerned about. But, the nurse reassured us that this sometimes happens during or after a transfusion, and that he was allowed to take two Tylenol when he got home. He was about to get angry with him about fussing about the fever, begging me to be quiet so he wouldn't end up staying in the hospital for two days! Instead, the nurse released us and told me to monitor the fever. Oh, the grief the caretaker has to endure just because you are trying to do your job!
While waiting around in the hospital room that day, I decided to call Dr. Eytan Stein at Memorial Sloan Kettering, even though I had been delaying the call until we had received the final results back from Cleveland. They were able to start a file for Todd, I answered all their questions, they told us which medical records were needed to be faxed, and anxiously informed us that the doctor had appointments as early as next Monday morning. I told them that we wouldn't be ready to come that soon, but that I would get to work in requesting the necessary records from both sets of doctors here in Dayton and Cleveland.
It ended up being a really long day (as always)! We made it home about 9:30 p.m. and found my mom there playing Wii games with our youngest daughter. (Thanks mom for entertaining and feeding her!).
We slept in late on Saturday morning and Todd felt well enough to have lunch with friends. They could tell his energy level and spirits were much increased from the last time they had seen him. I felt good that day too. I felt optimistic that this study drug would be a good choice for Todd. I pray it will be able to restore his blood counts enough to function without the need for transfusions, risk of infections, and eliminate his fatigue.
But, for the meantime, he has been taking naps every day, which helps get him through the day. I wish he had a better appetite, but I really can't complain. I keep asking if I can get a current picture for the blog, but he usually responds like, not while I'm laying down! (Vanity still there! ha!).
I was blessed to be able to work two days last week and I also received two calls for other jobs. When talking with our friends and family, most have assured me to continue to trust God's timing and not push things to the point of just making things more messy and stressful. Accepting a job that is not right for our family right now could be detrimental. I knew just talking to Dr. Stein's staff the other day, that no one knows Todd's medical history, his counts, numbers, conditions, tests, or the research in the field better than me right now. I'm in the best position to take care of him and its really where I want to be: by his side.
P.S. Talked him into it!
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