6 months to live

• Author
  Posts
• October 19, 2023 at 7:43 pm #65994
  Sylvia Rothbein

  Participant

  My husband was diagnosed in June 2023 with mds-eb2 which is very high risk. We were told that his current treatment plan, azacitidine + venectoclax will stop working in approximately 6 months..he ll then go on decitibine for a 2 month life extension. This is very distressing. He’s not a candidate for a bone marrow transplant at 76 with health co morbidities. Has anyone here been on the above treatment plan with better results I e. Survival more than 6 months.

  October 20, 2023 at 9:06 am #65996
  bexar2120

  Participant

  Well, all the medical journals/ studies performed I have read state a poor/dismal overall survival rate for High Risk MDS.
  I have High Risk MDS ( 61 yo male ) and current drug 5-Aza as apparently starting to lose effectiveness. We have a bone marrow exam at Houston Med Center ( Nov 2023) to chart a treatment path going forward.
  Listen to your cancer care team and consider and discuss National Clinical Trails. Understand that the treatment drugs eventually stop working

  October 21, 2023 at 12:05 pm #65999
  Sylvia Rothbein

  Participant

  Hi Bexar2120

  My husband is being treated at Memorial Sloan Ketteringin Nyc and is on Vidaza + Veneteclax which we were told is the most effective treatment for high risk MDS. Do know why you’re not on a dual therapy which is more effective than mono therapy?

  He can’t get a bone marrow transplant so when his treatment starts to become ineffective in app. 6 months he is essentially terminal.

  A bone marrow transplant is the only hope to cure MDS but is very risky.

  Good luck!

  October 21, 2023 at 2:20 pm #66000
  bexar2120

  Participant

  Yes, the Standard care of Treatment is to add Venetoclax as a second drug. The scheduled bone marrow exam will give us clinical information to chose a treatment course. The choice is add Venetoclax OR qualify for a National Clinical Trial – but this hinges on clinical findings from upcoming bone marrow exam.
  Your at a good treatment center; we are headed to Mays Cancer Care Houston Downtown. Currently receive care in my hometown – Mays Cancer Care U T Health San Antonio Tx.

  We chose not to do bone marrow transplant with another donor’s stem cells. Quality of Life is most important for me – I do not want my family members providing home care!

  October 21, 2023 at 4:07 pm #66001
  Sylvia Rothbein

  Participant

  So ur not getting a bone marrow transplant? I heard it can be brutal.
  But the chemo loses its efficacy….for high risk my husband who is very high it can be around 6 months….very depressing. His doctor only knows about trials from MSK…is there a website for a national trial list?

  October 23, 2023 at 5:01 am #66003
  Heinz

  Participant

  Dear Sylvia, dear Bexar,
  maybe my case can give you some courage? I am now 80 years old, 22 years ago there was a suspicion of MDS, after 9 months I had MDS RCMD and after 18 years MDS-EB2 became sAML. Now my treatment with 5-Aza started, Venetoclax was not approved in the EU at that time. I received 25 cycles of Vidaza, the last 4 months of which were additionally with VEN. The effect of the treatment started immediately until the 9th cycle, then the blood values deteriorated continuously, especially the platelets. When my oncologist now became perplexed, I sought advice from two university hospitals. From September 2022, on the advice of a renowned professor, I will be treated with a cancer drug that has been known for a long time but has been approved for other types of cancer (off label use). The treatment is limited to taking one pill daily. Blood transfusions have not been necessary for a year. Blood counts fluctuate but I feel really good. I protect myself well against infections, but otherwise I have no significant limitations. Of course there is no chance of a cure but I hope to keep the disease reasonably stable for a while.

  Now to you both: Don’t be discouraged, but bravely tackle the fight against the disease. The decision for a bone marrow transplant at an advanced age is very difficult and should only be made personally after careful consideration of the risks and side effects. The information given by the doctor about the expected time frame is not wrong but in my opinion too strict, because every case is definitely different because very many factors play a role. I would therefore inquire about the exact details of the bone marrow examination, among other things the amount of blast is very important and what are the cytogenetic findings? Are there any molecular genetic aberrations? If the response to these inquiries is unsatisfactory, I would seek a competent second opinion in any case.
  I wish you both and your husband Sylvia a happy future.
  Heinz

  October 23, 2023 at 11:59 am #66005
  Jean Ira

  Participant

  Dear Heinz, Will you please tell us the name of the cancer drug pill that you were prescribed (off label use)?
  Thank you,
  Jean

  October 24, 2023 at 10:05 am #66008
  Ashley Moncrief

  Moderator

  Hello,

  Just wanted to pop in to answer the question on a list of clinical trials. We have partnered with a company called SparkCures to help develop a searchable database for MDS clinical trials. I included the link below. It can be used by patients, family members, or healthcare providers. I hope this helps!

  https://mdsf.sparkcures.com/

  October 30, 2023 at 5:48 pm #66534
  Sylvia Rothbein

  Participant

  Thank you Heinz for your reply as it is very encouraging. My husband is on the Aza plus Ventoclax regimen. HE is on his 3rd cycle and is doing very well so far…but the oncologist said it will stop working after 6 months…ugh. the alternative after this regimen is Decitibine which the Dr.said will give him another 2 months.

  Please let me know the name of the new drug you’re taking and I will discuss with the Dr.

  Hope you continue to stay well.

  Regards
  Sylvia

  October 31, 2023 at 7:58 am #66535
  Heinz

  Participant

  Dear Sylvia,
  thank you for your reply. I understand your demand about the name of my medicine but I ask for your understanding and a different approach. After all, the drug is not suitable for the initial treatment of mds-eb2, for that 5-aza with VEN is the right decision.
  My recommendation was and is to question the diagnosis and ask for details about the cytogenetic findings and any molecular genetic aberrations as well as the level of blasts. Only from this can the actual risk and prognosis be deduced and then the therapy possible for this. If this information is available, I will be happy to discuss the matter in more detail, and then it will be possible to clarify quickly whether my drug can also be helpful for your husband.
  All the best.
  Heinz

  Translated with http://www.DeepL.com/Translator (free version)

• Author
  Posts