Hello and High Risk MDS Advice

[JordanN]

Hello! I’ve been reading these forums for several months and just wanted to say that I am amazed and inspired by all the caring and supportive people on this forum who give so much support and advice all while facing their own overwhelming struggles. I wish all of you the very best with all of your treatments and hopes for a healthy future.

I have seen many posts from members dealing with low- or intermediate- risk MDS and members dealing with transplant issues, but not many posts about high risk MDS for whom transplant is not an option and for whom treatment with Vidaza was unsuccessful. My 80 year-old father (MDS RAEB-2, chromosome 7 abnormalities, transfusion dependent, blood counts at dx: Hg = 8, WBC = 1, Plt = 30) is in this situation, and I would love to know how others have managed this scary disease. Thank you in advance for any input anyone has!

[DanL]

Jordan,

If Vidaza has not been successful, the next options typically go to clinical trials and supportive care, which might include drugs to help stimulate red blood cell (Erythropoietin) platelets (TPO), and white blood cell production (neupogen), as well as prophylactic antibiotics. If you haven't already been working with a specialist in MDS, you may want to seek out an MDS center of excellence to seek other treatment options for your father.

[Birgitta-A]

Hi Jordan!
As Dan wrote your father could receive EPO-drugs like Aranesp for HGB, Neupogen or similar drugs for his low WBC and Promacta (not yet approved for MDS) or platelet txs for his low platelets.

Then there are several clinical trials for patients like your father. Look at
https://clinicaltrials.gov/ct2/resul...&Search=Search

Here are the latest results for SGI-110 and Rigosertib
https://ash.confex.com/ash/2014/webp...aper67012.html
https://ash.confex.com/ash/2014/webp...aper73066.html
Kind regards
Birgitta-A
75 yo. Dx MDS Interm-1 2006 with severe bone marrow fibrosis and HGB 7.0. Supportive therapy with txs, iron chelation and Neupogen until 2010. Positive response to Thalidomide 2010-2013. Now taking Revlimid since 2013 but no longer responding and tx dependent again.

[JordanN]

Hi, DanL and Brigitta,

Thank you for your quick and helpful replies. My dad's oncologist does not work for a MDS Center for Excellence directly but does work with the doctors at Stanford and seems very up to date on current therapies for MDS. He is also pretty patient with lots of questions. I would like to ask him about some of the medicines DanL mentioned as they have not been discussed so far, and I have wondered why they haven't been used (do they stimulate the bad blasts, too?).

Brigitta, thank you so much for websites. They have so much information! My dad was considered for a trial, but it was too close to the start date to use him. I will ask his doctor about the possibility of another one if my dad would like to try it. He has a very good attitude and is very patient, but he is also discouraged and very, very fatigued. He went from hiking several miles a day, consulting for his former company weekly, and doing lots of activities to hardly being able to walk across the kitchen in just a few months.

It looks you have both been through so much! Best of luck in your continued treatment and best wishes for many happy years!

[bebop]

My dad was high risk and opted not to do treatments other than transfusions every week. It is a very difficult thing to go thru. My dad was 80 at diagnosis. He opted for quality of life. My prayers are with you all.

[JordanN]

Hi, Bebop!

Thank you for your kind words! I have to tell you that you are one of the inspiring people I was referring to in my initial post! As I was searching through the posts these last few months searching for answers to this horrible disease, your story was one of the ones that really touched me (we both have 80 year old really amazing dads that we love with all our hearts), and I was so impressed that you continue to provide so much love, support, and comfort to everyone on these boards even after the loss of your sweet dad. You are a special person!

I really respected your father's decision to forego treatment other than transfusions. My dad had to stop Vidaza due to infections and toxicity, and I have to say, I think he is more comfortable and perkier without the Vidaza although his blood counts are getting worse. I lost my mom to cancer a few years ago, and it is definitely not fun to be on this roller coaster again! Thankfully, you and others on this forum make it so much easier. Thank you!

[Caregive]

My husband is currently in hospice after trying Aranesp, I forget the name of the second one, and two weeks ago Dacogen. He had a good quality of life till two weeks ago when his legs stopped working and I was told his blood work looked like he had malnutrition and starvation. It won't be long. He was diagnosed two years ago and did the best things, good doc, two trips to specialty hospitals. I did most of the cooking, vegs, fruits, most we grew at home, some fish, meat and all. I wish you all better luck than that except that his family is all around him now. The collapse was sudden, blood numbers wouldn't stay up even after transfusions. Not sure what precipitated the downturn, maybe the chemo. So there we are. Thanks for listening.

[JordanN]

Dear Caregive,

I'm so sorry to hear of your husband's sudden downturn! I can see from all your previous posts that you have taken such good care of him (and everyone on this board, too!) always finding good doctors, encouraging him each day, and preparing beautiful homegrown meals - you're an inspiration to us all. Entering hospice is heartbreaking, but they were so comforting and helpful for us when my mom was sick, and I hope they can provide you with the same support. So glad your family can be with you during this difficult time. Please, know that I will be thinking of you both and hoping and praying for you both as well! Lots of hugs to you!!

[Birgitta-A]

Hi Caregiver!
How sad that your husband's counts won't stay up! Hope you will be able to support him in the future as well as you have done before!
Warm regards
Birgitta-A

[bebop]

Jordan you brought tears to my eyes. I too lost my mom years ago to pancreatic cancer. I am so sorry you are going thru this again with your Dad. I have to tell you it was not easy for any of us when he decided not to do the vidaza. I knew his life would not be long but he lasted alot longer than they thought. I cherish the times I spent with him. He is forever in my heart. Make every day count. I guess you can tell I was a Daddy's girl lol. Much love to you and yours.
Elaine

Originally Posted by JordanN

Hi, Bebop!

Thank you for your kind words! I have to tell you that you are one of the inspiring people I was referring to in my initial post! As I was searching through the posts these last few months searching for answers to this horrible disease, your story was one of the ones that really touched me (we both have 80 year old really amazing dads that we love with all our hearts), and I was so impressed that you continue to provide so much love, support, and comfort to everyone on these boards even after the loss of your sweet dad. You are a special person!

I really respected your father's decision to forego treatment other than transfusions. My dad had to stop Vidaza due to infections and toxicity, and I have to say, I think he is more comfortable and perkier without the Vidaza although his blood counts are getting worse. I lost my mom to cancer a few years ago, and it is definitely not fun to be on this roller coaster again! Thankfully, you and others on this forum make it so much easier. Thank you!

[bebop]

Caregiver I am sorry to hear this news of your sweet husband. Why did they only do the arnesp? No transfusions or anything else?

[JordanN]

Hi, Bebop!

You are so sweet! I'm so sorry that you lost your mom, too (my mom's middle name was Elaine!)! I hope you are surrounded by more loving family members and friends to help you enjoy your memories of your parents and help you feel strong when you're missing them. You also have a new friend here who is also a daddy's girl and is grateful for all the information you have shared to help me take as good care of my dad as you did of yours!
Sending hugs your way!

[JordanN]

Hi, Caregiver!

Just wanted to let you know that I hope things are getting better for you and your husband and that I am thinking of you and praying for you each day! You are a wonderful caregiver!!

[bebop]

I only have 1 brother left but I do have my children. Your mom had a great middle name lol that is also my middle. I don't like my first name lol. I am glad to have a new friend! one can never have enough friends!

Originally Posted by JordanN

Hi, Bebop!

You are so sweet! I'm so sorry that you lost your mom, too (my mom's middle name was Elaine!)! I hope you are surrounded by more loving family members and friends to help you enjoy your memories of your parents and help you feel strong when you're missing them. You also have a new friend here who is also a daddy's girl and is grateful for all the information you have shared to help me take as good care of my dad as you did of yours!
Sending hugs your way!

[JordanN]

Hi, Bebop!

You have been through too much! Your post sounds as though you have lost siblings as well, and I am truly sorry that you have had to go through that! As a said, you are a very special person to have so much love and kindness for others after experiencing so much loss! I am glad you have your children, and I hope they know they have a super mom! Sending extra big hugs to you!

[bebop]

I lost a brother in a tragic accident 96 days before my Dad passed. It was horrible.

[JordanN]

Hi, Bebop!

I can't even express how much I feel for you and all you've been through! I think you are amazing, and I hope that life brings you only the best from here on out! You are helping so many of us with your story, and I thank you for sharing it! I am definitely afraid that things will not go so well for my dad given his current situation (not many treatment options and platelets have fallen a lot in the last couple of weeks), but it is just so helpful to hear what others have experienced and to know that none of us is alone (especially us daddy's girls!).

[bebop]

hon hon. my dad's platelets went in the toilet in probably Dec or January the year he passed. I mean like under 10 most of the time. He began plt transfusions as well as the blood. plts don't last long at all. Is your Dad getting plts at this point?

[JordanN]

Hi, Bebop!

When my dad was on Vidaza previously, his platelets would drop to around 10 two weeks after his chemo. He would get a transfusion of 1 unit platelets and then the platelets would go up closer to normal range on their own before the next round of Vidaza (his WBC never moved from 1 and his Hgb would never increase without 2 or 3 units of pRBC). His doctor decided to try a few more rounds of Vidaza hoping that it might keep the MDS at bay for a little while longer, but after this round, my dad's blood values all fell and nothing increased without transfusions. He can hold RBC for about two weeks, but this time, his platelets aren't going up on their own. His platelets are staying in the 20 range so no transfusions for now. Doctor is going to try one more round of Vidaza, but if his numbers don't improve, he will probably just be on supportive care. I know many people on here have had much worse blood counts, but it feels like his counts are changing how they had behaved previously - very worrisome! Also, for the last two months or so he is bleeding much longer after blood tests, infusions, etc than previously even when his platelets are a little bit higher. Did you notice a change in your Dad's counts throughout his time on supportive care? Thank you for your help!

[bebop]

at first his counts would go up but then they wouldn't. his plts held ok not great for almost a year then seemed to collapse. a month before he passed his dr finally told him nothing was working anymore and would stop transfusions. he passed about 30 days later. btw after a couple of months of the blood transfusions he didn't seem to recover and have energy. I watched him grow very weak even with.

[JordanN]

Thank you for your thoughts and experiences, Bebop! You're so right - it is very hard to watch your dad get weaker and weaker and feel so helpless to make anything better! It helps to be able to come here and find people who understand! I hope you and everyone on the forum has a wonderful Thanksgiving!! Sending hugs to all!