[Amy Clark]

Well, Clement Rose, that is/was the million dollar question for many of us. We feel your angst.

My husband didn’t really want to start it either. The other choice was to stay on the Aranesp injections which after a couple of months hadn’t done anything and he was needing more blood transfusions than before. Blasts were at 6% and the doctor gave us 7 medical articles/studies highlighting how bad ASXL1 was. We were newbies. We all are. In hindsight, we may have needed to give the Aranesp more time. But… We made the best decision we could with the info we had at the time and knew that we couldn’t look back with regret, because we never will know what would have happened.

We decided to go with the Dacogen.

We found general info for some mutations’ predicted response to hypomethylating agents (Dacogen/Vidaza) when the mutations were looked at individually, but no study that took the combination of mutations into account. And keep in mind that even these studies only often account for the first 4-6 cycles. His mutation did not look like a good responder to HMAs, but it was a better option than Aranesp we thought.

My husband was not showing much response during the first 6 cycles, in fact he was worse and progressed the first two months, but told the doctor he wanted to stay on for at least 7 cycles because of articles we had read early on that said sometimes the response is delayed. Guess what, after the 7th cycle there was a def. uptick in the RBCs. He is now on cycle 10 and we will ride this until his MDS progresses or he develops leukemia. At that point he will look for another clinical trial, probably one with Venetoclax.

At our visit last week the doctor told us that he was glad we were patient people, as he was not a patient doctor. He strongly, strongly encouraged my husband to have a HSCT several times while he was on the Dacogen. But my husband and I told him that from what we were reading, the relapse and death rate from HSCT for the ASXL1 mutation and several other reasons warranted us giving this med a good long run.

Ha! Look at this. I just paused writing and googled a bit and this article popped up. Here is one recent study by a doctor at the Cleveland Clinic who is trying to find the answer to what you are asking in your topic question using several combinations of biomarkers. Maybe there is info here that can help.

I will pray for you to have a clear direction. These decisions are so personal and can be very difficult. There is no one-size-fits-all answer. God bless you.

https://ascopubs.org/doi/full/10.1200/PO.19.00119

• This reply was modified 4 years, 6 months ago by Amy Clark.
• This reply was modified 4 years, 6 months ago by Amy Clark.

[Amy Clark]

Alicia,
I am so sorry to hear that your levels have turned low again. I have been praying for you. I called my friend whose husband relapsed after his HSCT and she said his symptoms were extreme pain in the hips and shortness of breath. His MDS returned as AML, 56 days after the HSCT.
I will pray that there are some answers and options when you get the results of the BM.
Amy

• This reply was modified 4 years, 6 months ago by Amy Clark.

[Amy Clark]

Hi Bobby,
Sorry for the delay in responding. I did not see this post for a while and then was waiting for the Sept. 18th lab report with a ferritin level in it. To answer your questions..

1. He was taking Cucumin Turmeric capsules sold by a local doctor, Dr. Hotze, or the Now brand Turmeric Bromelain capsules from CVS/Amazon/etc.
2. He was and still takes 2 g (2000mg) a day, split into two 1 g (1000mg) doses. The Now brand comes in 600mg, so he would take 3 total. The dosage wasn’t always exact. He took turmeric almost every day.
3. He ferritin was highest in mid-April at 2321. He had one more transfusion after that on April 23rd. He has not had any transfusions since then. (PTL!) He started the turmeric right around this time, as the Jadenu had to be stopped due to high ALT levels.
4. After the June ferritin of 1200, they did not measure his ferritin until this month, Sept. His ferritin level last week was 1120.

Considering the turmeric lowered his levels by half in a couple of months, he would do it again, but we are obviously a bit surprised it hasn’t continued going down since June. He will keep taking the turmeric though, b/c it also helps with general inflammation and he notices a difference in his bone pain if he doesn’t take it.

As I am writing this I am wondering if the article I mentioned above has any more info about dosages of turmeric. Maybe a higher dose is needed to remove more? Maybe a lower dose over a longer period?

I hope this info helps someone. God bless you all.

PS When we receive his latest bone marrow biopsy results, I will post an update about his overall journey up to this point. We see the doctor next Wed.

[Amy Clark]

I am sorry to be late in replying. We have not had any experience with swallowing problems as a side effect of the meds my husband has taken, but would encourage you to contact your father’s doctor. With your father’s platelets being so low and his transfusions being so frequent, you are likely concerned that these are all symptoms of disease progression and end of life issues. Hopefully that is not the case, but you obviously care enough about him to find out if there is something else that can be done or how to help him from this point on. He is blessed to have you by his side. God bless you.

[Amy Clark]

Rose, I was relieved to hear from you on the GVHD thread and now this one, albeit sad he is having trouble on a daily basis from GVHD at this point. Thanks for updating all of us. We really do want to hear and will keep praying for a good outcome from this point on and relief from the GVHD. I had read too that the chimerism reports after a HSCT can fluctuate for awhile and was surprised to find that out. Hopefully day 180 will bring better news. God bless you, Amy

[Amy Clark]

Tara,
I am so sorry to hear of your husband’s passing. This is a terrible disease and what happened to him was truly tragic for him, you and your son. I am so sorry. Thank you for sharing his story. No doubt it will help someone else going through this disease. I will pray you are given the peace and strength for the days ahead. God bless you, Amy

[Amy Clark]

Hi Kathy,
My husband was diagnosed with MDS in August of 2018. His hgb was hanging in the 8s. His ferritin level hit 1800 in Feb. 2019, then he had four more units of blood to total 25 before they started him on Jadenu in March. On average his ferritin would go up 85 points with each unit, so he was likely over 2000 when they started the Jadenu. He had a some side effects on Jadenu like nausea and upset stomach, but he hung on with it in hopes of lowering the ferritin level. However, his liver enzymes went high (ALT 160), so they stopped the drug. Then he started reading up on high ferritin levels and found an article that talked about turmeric lowering ferritin levels of those with hemochromatosis. He decided it was worth a shot for someone with mds and after two months of turmeric his ferritin was 1200. We were very surprised! I have no other info than this. Hope something works for you. I will pray for you too. Amy

https://hemochromatosishelp.com/turmeric-benefit-for-hemochromatosis/

[Amy Clark]

Rose, I just prayed for you and your husband. I am sorry this is such a roller coaster of emotions. I know from your earlier posts that your faith is helping you through this time. I will ask for peace and strength and wisdom to be given to both of you. Thank you for sharing and keeping us updated when you can. I look for your posts and feel grateful to hear how you all are doing. Don’t ever think that no one reads or cares on this forum; many of us are just silent cheerleaders and prayer warriors. Hang in there. Very glad to hear that the prednisone is working for his rash and lbm. We are hoping for the best results possible of the biopsy. Amy

[Amy Clark]

That is wonderful news! I am sure I speak for many when I say that I have been wondering how all of you were faring. So happy that he is trending in an upward direction and praying for more good days ahead.
God bless you, Amy Clark

[Amy Clark]

Thank you for the responses to the questions and comments. I hope others respond too, both good and not so good experiences after transplant. I am starting a new thread called “Articles on Mutations and Transplant Side Effects.” I am so happy to hear from Paul and Ulli. Please keep us posted.
God bless you.

[Amy Clark]

We have been trying to find out the answers to the same questions you are asking and are finding it hard to get real stories about post-transplant life except from those for whom it worked well, but from everything we read those fortunate people are the minority. And the outcome and relapse rates vary greatly among chromosomal and mutational differences within MDS. All of the numbers we find have to do with survival and not much info at all about quality of life except the term, “a new normal.” This is vague because everyone ends up so different. The blood cancer world is very excited that anyone with certain MDS types survives at all, so much so that a lower or same-as-now quality of life and long term side effects are accepted as part of the process for those lucky ones who are cured by a HSCT.

Unfortunately, the new normal after a transplant is often different than what most think it will look like. This is what the patient coordinator at Be the Match told me. She also told me that I was right to be concerned and to find out this quality of life and post-transplant relapse information beforehand, as many people are shocked after a transplant by both. I did find three people who wrote about post-transplant life other than the lucky ones. I can find the lucky ones’ stories pretty much anywhere. Tomorrow when I have more time I will post a link to these.

I read that people who aren’t doing great after transplant don’t talk about post-transplant life because they may feel guilty that they have complaints when they are supposed to feel grateful to be alive or because they have moved on and are consumed with the new normal.

I am not against transplants, I am against a patient making a decision without accurate or fulsome information. My friend’s brother (54 and in good health other than MDS) underwent a transplant at the same place we are at in June 2018 and they did not feel like they understood the seriousness of the situation, in part because transplant is termed the “standard of care” for blood cancers. The possible side effects were rattled off in a 10 minute conversation about post-transplant life and handed to them on a black and white sheet of paper. The people they were told to talk to all had had good outcomes, albeit with some short lived side effects.

When her brother left the hospital after a brief stay of 14, yes 14, days post-transplant, the family thought they were home free. Everyone at the transplant center was super excited for them. Then at 56 days he relapsed. The docs did another round of induction chemo to try to prepare for a second transplant. “We can do something,” the center said. The induction chemo didn’t work the second time because the relapse was much stronger than the original MDS; it had come back as AML. So he was very weak from the chemo and he died 3 months after relapse. The wife had not prepared their adult children for the real possibility of death from transplant complications b/c she wanted to keep the positive attitude going and because they were listed as possible side effects. They thought side effects happen to other people, not to them.

I found an article about different relapse rates based on genetic mutations. It came out in 2016 and my doctor at a CofE hadn’t read it yet until I brought it to him this month in 2019. The doctors can’t keep up with everything; there are many, many different types of MDS patients. He had given us the “25%” answer as a relapse rate for all MDS patients, but for some it is much higher. My husband’s mutation has a 45-50% relapse rate after HSCT based on this and other recent studies.

I am sorry if this is disturbing for some, but I am eternally grateful to find someone on here who wants to hear more than the info you get on every corner. You may not end up needing this information, some don’t, but many do and they are unprepared. Thank you for letting me talk. I feel as if I am not hiding a secret anymore. God bless you.

[Amy Clark]

Hi Rose,
It sounds like we are on the same oral trial with decitabine. It also sounds like it has worked much better for your husband than mine! That is awesome! We have not had a transplant either, but I will share what I have found.

I will warn you. The information that I have to write in response is not very encouraging. You don’t have to read it if you don’t want to. But maybe writing it will put into words what some have been wanting to see voiced but are afraid to ask or don’t know who to ask or don’t know if they can ask at all. Some family members get outright mad when anything that is not really positive is brought up, as if it will put a negative spin on things just because they asked. This is unfortunate. Being mentally prepared for both good and bad outcomes can be freeing for those who may be in charge of caring for the patient as well as the patient him/herself and any loved ones. Acknowledge the worst and pray for the best in whatever decision you make, transplant or not.

Here goes…The impression we have gotten from the two transplant (HSCT- hematopoietic stem cell transplant) doctors at different CoE is that they really, really want to offer us a solution to a terrible problem. I get it. I really do. We all want a solution and they have a solution… for a few. So, the negatives are spoken of, but in medical language, and then the doctor thinks he has done his job of explaining side effects of transplant. However these side effects are not fleshed out in a way the patient or caregiver can truly understand because we haven’t lived through any of them, or at least not most of them and we don’t know what it is like to have these new, sometimes chronic or deadly side effects. We can’t even imagine. This is a problem. The patient and loved one goes home and most think, “OK, the doctor recommends a transplant. Let’s get a transplant.”

The main point made to us in the meetings is that this transplant is your only option for a potential cure at this time, otherwise you will die. But in reality I see transplant outcomes as one of three ways: 1) a certain much quicker and more violent death for at least a third of the people undergoing one due to transplant and induction chemo complications like infection, organ failure etc.., 2) a likely similar time frame to death with MDS but with much more medical intervention, pain and side effects or relapse for another third and 3) then a third who are cured and live longer than average than those with MDS, but many of these have HVGD of varying degrees or chronic side effects and a few skate through with minimal effects. This last group can still relapse, although after three years post-transplant, relapse becomes less likely. Total roll of the dice where you will end up. It will in a large part be a huge leap of faith to go through a transplant.

To be continued..

[Amy Clark]

Hi Joseph,
How are you and your dad doing? We have been thinking about your family daily and praying.

[Amy Clark]

Jason, please let us know how things go for all of you, the good and the difficult. We can at least pray. I certainly would appreciate your perspective. I am sure there are many others who feel the same.

[Amy Clark]

Hi Jason,
I am sorry to hear of your dad’s decline and you and your family’s pain in watching him pass away. I will pray for all of you and especially for your dad, that he is ready and at peace. He and your mom are both blessed to have you with them.

I took the liberty of asking your question to the PA we saw today at MD Anderson and she said that everyone is different b/c of the body’s ability to learn to tolerate low levels of Hgb, but that living 1-2 weeks wouldn’t be unusual without other complications in the picture. She then said that low platelets are the same in that there is variability of outcomes, but that she has seen lower labs than 5 without the patient having problems. She didn’t give me a time frame on that one because they transfuse a patient when the plt level shows up that low in clinic.

If you need more info, consider calling the hospice group your dad is receiving services from and ask if they have an experienced RN on staff who may have worked with other patients in this situation. We used hospice just two months ago for my father-in-law and while he did not have cancer, my specific questions about the last few days we answered that way. And they held true for his passing.

I too hate this disease. Watching our (young) children anticipate and see my husband’s decline is even worse than my own pain. Your mother may feel similarly. Be good to each other. Suffering is hard. HOW God makes good things come from bad for those who love Him is certainly a mystery to me. But I know He does, and so I am holding onto that.

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