October 21, 2016

Things settling down a bit. Yesterday was a rough day.  Todd had a 103 fever and felt hot and lethargic to the point that he couldn't stay awake. I was so worried about him, because it was very hard to rouse him.  Once the fever was gone he felt some better. They moved us Transplant Floor on 17 back to the Leukemia Floor on 16 about 1:15 am this morning!  We have a very small room but hopefully we won't be here long. His counts are very low. Platelets have been 4,000!

Thanks to Kim Bird (my high school friend who lives in Ft. Worth, TX) and her husband John for running out and buying Todd a new pillow and delivering it to the hospital. So many of you have been extremely generous in your support!  We are so grateful. You are the driving force behind us. The wind beneath our wings when we are too tired to do anything but coast. And we are tired of being shuffled around; it's exhausting. It will be nice when we can find a place to settle into.

Todd's Room 1678 Second Admission

3rd Round of Chemo starts with Neutropenia

It's been almost a week since I've had the chance to update the blog!

APPOINTMENT WITH LOCAL ONCOLOGIST: 

Todd's Thursday, February 5, 2015 appointment with the local oncologist went well. His doctor hadn't left for his trip to climb Mt Kilimanjaro yet (leaves on Sat). Todd's counts were stable and no transfusions were needed. His hemoglobin went to 9.1 and his platelets to 29,000 which was good, but his Whites and ANCs were still low. 

We talked about whether to proceed with the Vidaza on Monday or not. The Dr. said that his BMT doctor in Cleveland is the quarterback calling the shots, which in her opinion is treating if ANCs at .500 or greater. The local oncologist said he wasn't quite comfortable with that and likes the ANCs to be around 1.0 but has proceeded with counts of .7 or .8 in special circumstances. 

Todd had a good day on Friday. Saturday we got up early and took our daughter to her second college visit in Columbus, OH. While the campus we toured was compact, there will still a good amount of walking and stairs to climb.  It was  a long day. Even though he was wiped out, he was glad he got to go.

On Sunday, I made him stay home to rest while I took our youngest daughter to a volleyball tournament. These things are crazy!  They are fun to watch, but they are all-day!  We left at 7 am and got home at 8:30 pm!  It's loud with screaming, cheering, and whistles from about 8 courts blowing at every point!  You're in one building with about 300 people, so it's not an ideal place for him to be. I was happy he trusted my advice as his caretaker to stay home and rest up for his chemo treatment the next morning. 

Needless to say, I was exhausted and I'm healthy!  So Todd went to his chemo appointment alone so I could sleep-in.

 FIRST DAY OF CHEMOTHERAPY: MONDAY, FEBRUARY 9, 2015

His first chemotherapy appointment routinely starts with a CBC to check blood counts before starting the chemo. For some reason (Todd said they weren't busy), his regular nurse at the local Cancer center DID NOT wait for the results and started treatment anyway. Todd didn't stop her. Once the treatment was already running, the results came back with his ANCs at .300!  Todd told her then that he wasn't supposed to get the chemo with his ANCs below .500, but she said there was nothing in his file that stipulated that. I would think she would have known better! She should have waited and asked the doctor on call or something before treating!!! (And the doctor wonders why we prefer treatment at the Cleveland Clinic).

I was so upset and concerned when he got home and told me what happened. He was upset but not for the same reasons: he felt like what choice did he have?  He could not get the chemo and then risk the disease growing stronger and jeopardizing the second transplant or he could get the chemo and maybe get an infection or neutropenic fever.

I think this has been the most devastating part of battling MDS. You have so few options available, and most are just the best they know of or have. That is why the research trials are so important. There are a few treatments they know that work, even in trials, but nothing is long-term. Oh, how we need to pray for a new cure!  The only "curative" long-term treatment is the bone marrow transplant and we have learned, there is no guarantee that it will work. 

I stay in touch with several patients and families we met on the transplant floor while Todd was at the Cleveland Clinic.  Very few are doing well.  One friend who had MDS and stopped responding to Vidaza, had her transplant but has had complications with her chimerism too.  It was going in the right direction at first (her brother's donor cells were increasing), but then it started to reverse (her cells were increasing while the donor cells were decreasing).  Her two bone marrow biopsies post-transplant have confirmed that no disease is present (PTL!), however, they still needed to boost the number of donor cells.  She had a perfect match donor in her brother and also had no Graft versus Leukemia Effect after transplant.  She had to go in last week and have a new port put in her chest, and then received a mini-Donor Lymphocyte Infusion  (DLI) from additionally harvested stem cells from her brother.  No immosuppressions are given, so she is at risk of developing a serious case of Graft versus Host Disease (GvHD).   They are waiting for two weeks or more to see what happens.  If there is no severe GvHD, then they will give her another mini-DLI from additional stem cells they froze.  This process may have to happen several times.

Another friend contacted Todd this week to say he was back on the Transplant Floor with a case of RSV (Respiratory Syncytial Virus), which I have heard of in babies and the elderly.  And another friend has called for the last two weeks with updates about her husband.  His first biopsy was clean and his chimerism was at 98%  everything was going great, even though he had not experienced any GvL Effect from his unrelated perfect matched donor.   Then he got Cytomegalovirus (CMV), which immune-compromised people are highly susceptible to and his numbers dropped.  They treated him with strong antibiotics and it went away, but they couldn't get his counts to stay high enough to avoid weekly transfusions.  He was there for transfusions and a second biopsy to see if his Acute Myeloid Leukemia had returned.  He passed out and they got him in a wheel chair but soon after, half of his face started to droop and he couldn't remember the month or date.  They sent him to the emergency room, fearing he had had a stroke, but they found out that he had a Intracranial hemorrhage instead likely caused because of his persistent low platelets.  They had to take him to surgery immediately to drain the blood and relieve the pressure from his brain.  He was admitted with a drainage tube for several days afterwards getting platelets transfused every day.  While he was there, they took samples from his peripheral blood to see if his disease was back and found blasts cells there at 10%.  They started him on Vidaza the next week and I think he has gotten to go home for now!  

I had heard that there could be internal bleeding from severely low platelets, but I didn't know anything about Intracranial hemorrhages.  I did a little research and learned that this is not uncommon with patients with hematological  diseases, especially ones that cause low platelets (>10,000 or >20,000).  According to research, it is the second most common complication after infection. (Chen, 2012, background).

As you can tell, its not just Todd that is struggling post-transplant.  

Back to the appointment:

I put a call into his BMT Doctor in Cleveland this afternoon, and she confirmed that they are more aggressive at the Cleveland Clinic and she would have told them to proceed with the Vidaza had she been there anyway.  She did advise that Todd start taking his Cipro antibiotic right away, watch what he eats observing a neutropenic diet  (See http://www.lls.org/diseaseinformation/managingyourcancer/treatmentnextsteps/foodnutrition/neutropenicdiet/) within reason, and for him to try to be content staying at home, or at least limit being around crowds because there is so much still going around right now that he can catch.

The good news was his hemoglobin was 9.0 and his platelets were at 81,000. It looks like he received a boost from the transfusions and maybe a bounce from the second round of Vidaza.  At least these higher counts may help him have some energy and keep any serious threat from low platelets at a minimum for now. 

We are back to taking his temperature twice per day, watching for any signs of infections or neutropenic fever.  The doctor reiterated the need to go to the emergency room with any fever over 100.4.

So, please pray he gets through this week without too much fatigue, without a fever, and without any infections.   

Read more:

Chen, Chien-Yuan, Tai, Chan-Hwei, Cheng, Aristine, Wu, Hung-Chang, Tsay, Woei, Liu, Jia-Hau, Chen, Pey-Ying, ... Tien, Hwei-Fang. (2012). Intracranial hemorrhage in adult patients with hematological malignancies. (BioMed Central Ltd.) BioMed Central Ltd. Retrieved from: http://www.pubfacts.com/fulltext/22931433/Intracranial%20hemorrhage%20in%20adult%20patients%20with%20hematological%20malignancies.

Todd admitted to Miami Valley Hospital February 2&3, 2015

So, much has happened, I finally had to close out my last blog without including everything!  I tried to work on that post for the past two days, but just didn't have the energy to finish it.

Todd's counts have come up some, but he still needed a unit of blood this morning, Tuesday, February 3, 2015.  His whites went up from .9 on Monday to 1.1; his platelets went from 21,000 down to 13,000 yesterday and then up a bit today to 14,000; his hemoglobin went from 6.7 after arriving to 7.6 after his transfusions yesterday.  His hemoglobin was still at 7.6 this morning, so they are currently giving him 1 unit of blood.  From what I can tell, his ANCs were at .6 and have risen to .8 then to .9 today.  So, he is above neutropenia level (<500).

He learned from the physician making rounds, that his blood cultures came back negative for infections.  So, the reason for the fever was likely just a neutropenic fever.  (See http://www.uptodate.com/contents/treatment-of-neutropenic-fever-syndromes-in-adults-with-hematologic-malignancies-and-hematopoietic-cell-transplant-recipients-high-risk-patients?source=see_link)

I put in a call to his BMT doctor in Cleveland yesterday, just to let her know what was going on.  She called me back about 4:00 p.m. to discuss the situation.  First, she said Todd was welcome to come back to the Cleveland Clinic if we weren't happy with Miami Valley.  She thought Todd passed out probably because of the low blood pressure more so than the low hemoglobin, but it could have been both.  When I asked if she was still planning on having him start his 3rd round of Vidaza on Monday, she said yes.  As long as his ANCs are above .500 she was still wanting to proceed.  I told her I was concerned about his counts dipping even lower after resuming treatment.  She said, it would still be acceptable as long as they could be managed by transfusions, even if he has to get them often.  She has decided to though to move up the bone marrow biopsy to a week after this next round of Vidaza.  Nothing was said about doing a 4th round.

What was the most interesting information was that she has continued to check into the idea of enrolling Todd in that study for the new medication called AG-221 by Dr. Eytan M. Stein at Memorial Sloan-Kettering Cancer Center.  http://www.mskcc.org/cancer-care/trial/13-154   (see Post:  http://toddsmds.blogspot.com/2015/01/recommendation-stay-course-with.html).  She researched Todd's medical records and found that Todd does have the gene deletion that is required to enroll in the study.  In addition, there are no disqualifications for patients who have had a bone marrow transplant.  As long as they have been off their treatment regimen (chemotherapy) for at least 14 days, they can participate.  While the gene testing was done early on with Todd's initial diagnosis for clinic studies with his oncologist at the Cleveland Clinic, the test can be repeated "officially" for the record.  She said that the Cleveland Clinic has not been approved at this phase of the testing to conduct the trial, but she said the closest location that is offering the trial is in Chicago, which isn't too far.  While she's not ready to pursue this avenue right now, she likes the idea of having this option "in our back pocket" just in case.  I thought this was encouraging news.  I like that she listened and was open to researching my suggestion.

No appointments have been scheduled for Cleveland Clinic yet.  She's waiting to see how this week and next week goes.  But according to what she said, we will be heading back to Cleveland for a treatment appointment, bone marrow biopsy, and consultation with her around the last week of February.

Well, it is almost 2:30 pm and Todd just got his discharge papers.  He is changing clothes and we are getting ready to go home!  He has to follow-up with his local oncologist, or rather the physician's assistant (because his local oncologist is on vacation climbing Mt. Kilimanjaro) on Thursday morning at 9:30 a.m. at their office at Miami Valley South.  I hope it goes smoothly and that they don't give him a hard time there about collecting his CBC.

His third round of Vidaza is still scheduled starting next Monday, February 9, 2015.  They will do a CBC before starting.  So, between these two appointments, they should be able to stay on top of his counts to see if he needs any transfusions.  I think Todd has learned the hard way how important this is.  He said if he would have gone in on Friday or even Sunday morning to get his blood work and transfusions done, he wouldn't have had to spend the last two days in the hospital.