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
