[Amy Clark]

Thank you Heinz and Debbie,
I appreciate you both taking the time to share your experiences. I had read a while back about a couple of people on this forum who were taken off their HMA after having a large reduction in blasts and wondered how they were doing. In each case it had been a year or two since they stopped HMA treatment and they were fine. I also wanted to hear from others like yourselves.
Heinz, I am so sorry yours turned into AML, but am happy you had a treatment for 50 days that worked. I would love to hear about it in case we someday need it as my husband has a normal karyotype. My email is acclark0603@hotmail.com. Debbie, that macrodosing is also a new concept to us. If you don’t mind me asking, could you call or email me specifics. 832-540-4214 Do you still have myelosuppression with that level of dosing? God bless you both, Amy
If anyone else has had experiences after choosing to stop HMA treatment that they are willing to share, please do. Thank you in advance.

[Amy Clark]

Hi Mark, I am so sad to hear they found AML; that is certainly news no one wants to get. You have been through a lot. Hang on while they and you come up with a plan. I am glad you are at a COE. They often have ideas for hard cases that patients are unaware of. We are praying for you and are here for you. Call for any reason. Amy Clark 832-540-4214

[Amy Clark]

Hi Peter,
Best of luck to you on your MDS journey and with this drug. From my husband’s experience and my understanding, the side effects of HMAs that would affect driving have to do with overall blood counts dropping and the subsequent weakness/ poor feelings, as well as the pain inherent in the disease or as a result of bone marrow stimulation from the drug. It is hard to tease the two strands of the rope apart. Is it the disease or is it the drug? You can ask your doctor, but they are giving you an opinion on this one b/c both the drug and the disease affect people differently. Specifically the first few months while on HMAs, your body is adjusting to the cycle and you may end up in the hospital with a neutropenic fever. We later found out that our doctor at the time pretty much “expected” that to be the case. Hope this helps! My husband has been on Inqovi for over three years and would be happy to talk if you are ever interested. 832-540-4214

[Amy Clark]

Ha! on me. I never go to the main page of the MDS Foundation b/c I have a link directly to the forum. But there the info is on the home page, as “big as Stuttgart,” as my husband says. Sorry to repeat what most of you likely already know. Mea culpa!

[Amy Clark]

Just found the new IPSS-M Risk Calculator and article about it. I just tried to copy/paste the links and it wouldn’t post. So the title of the article is
Molecular International Prognostic Scoring Systemfor Myelodysplastic Syndromes
in “NEJM Evidence” publication from 6/12/22. The link to the IPSS-M calculator is at the end of the article, before the references. Hope that helps.

[Amy Clark]

Hi Siobhan,
We saw a new doctor this week at the same institution we have been at for the past 3 1/2 years and he told us that my husband’s mutations were controversial as to what they meant now. So apparently there is some debate going on up there. Sure is confusing. I think your suspicion about that particular mutation not being impactful for the overall prognosis is likely correct.

[Amy Clark]

Hi Dale,
I am glad your husband has you to care for him. It sounds like you are trying to do your best and that you love him very much. Yes, the situation doesn’t sound good, from what you described. From what I have read on this forum and in other articles, living on transfusions is a matter of weeks to months typically. That is once a medication has stopped working and the disease is progressing. Sleeping a lot from lack of energy and eventually not eating are the most common symptoms when one is dying from lack of red blood with MDS. Low platelets and low neutrophils are another type of progression, With Low platelets you may have eventual internal (or external) bleeding and with low neutrophils you may have infections.

You certainly need some support during this time. It would be better if you could talk with a nurse practitioner or physician assistant who is familiar with your husbands case (or at least MDS) if your doctor is not willing or able to give you more information. Of course every patient is different, but you could ask for the range of time they have seen someone in his situation live with transfusions. I will pray for both of you and hope you can both come to some peace with God if you don’t have that already. And for you to have the love and support you need.

[Amy Clark]

I am sorry about your husband, Kati. The low blood level needed for a transfusion is a big problem. The level that a single transfusion would bring my husband (age 55) up to, is little better than the 7 hgb in terms of symptoms. In looking ahead at possible options now that the current medication he has been on for three years (Inqovi, the oral form of Dacogen) is losing effectiveness rapidly, the transfusion problem is playing into our decision. We would be looking at another clinical trial drug which will almost certainly drop blood counts to the level of almost non-function and which may not work to start with. Does he want to spend his final months worse off than he currently is for a possible few months of better health later. The doctor keeps saying he is an “experiment of one” at this point, so we have little info to go on. Of course it may turn out better than it seems right now, as happened with this current drug three years ago, but the line between diminishing optimism and acceptance is getting longer in his case. We will have to choose one or the other in the next few weeks.

In any case we plan to talk to our oncologist at MD Anderson tomorrow about the Directed Donation program at our local blood bank (Gulf Coast Regional Blood.) as we have adult children with my husband’s blood type who would be glad to donate “directly.” Your area may have something similar. Here is a description of ours in case that helps. Just scroll down to the middle of the webpage. https://www.giveblood.org/donate/why-donate-blood/donation-types/
Even with this potential help, the hospital may keep to their cutoff levels before donating. To think that three years ago the cutoff was 10 hgb is astounding.

I am sorry this disease is so awful. It really stinks. I will pray for you and your husband and everyone else on this forum. At least we are not alone and the work being done today may help others in the future, just as the work of several years ago has helped my husband live for the past 3.5 years since dx and perhaps, God willing, even longer.

[Amy Clark]

Hi Chris,
Sorry you are having to deal with this. Sounds like you are in a “good” spot, though, not needing treatment now and being seen at a COE. Several people on this forum have lived on “watch and wait” protocols for many years before starting treatment. Reading is good so you can learn what you can, but don’t let the multiple dx. run your life until/if ever, you have to. If anything, do things now to increase your faith and pray for wisdom. And enjoy your family.

My husband was dx at 52 with MDS/CMML/MPN, but he had MDS/CMML at 50 when we look back at earlier labs. He was also very active. He started on a clinical trial three years ago that became the drug, Inqovi. He is still taking the drug, although lately he has been having problems with his counts and liver. Currently we are in another “process of discovery” as I call it, trying to figure out what is going on. Progression of one or more of the diseases? Liver inflammation? Transition to leukemia? We have six children, 13-26, but our youngest was 10 when he was dx. We understand some of what you are feeling. Feel free to call if you think it may help. Or not. Richard and Amy -832-540-4214 God bless you!

[Amy Clark]

Lee, my husband is 55 now and was a triathlete before MDS and another health issue sidelined him. We feel for you and all of the uncertainty you are facing. Husband was dx high risk 3 years ago and has been on oral decitabine (Inqovi) which is the other HMA like Vidaza. Happy to talk to you or your wife. Shoot an email to acclark0603@hotmail.com. At a minimum find out your actual blast count, your Hgb and why the doc. is not encouraging an oral HMA. You spend less time beholden to the clinic’s schedule if you are on the oral route, but maybe the doc has another reason. (I would be curious as you are young.) Many people have an adjustment period to the HMA drugs as it drops their counts more the first one or two times and you may end up needing extra care. Btw, I am also a nurse. Praying for you. Let us know if we can help.

[Amy Clark]

Ilona, I am so sorry to hear that your husband passed away a few days ago and that your heart is breaking with grief. I am praying for you and hope that in time the good memories with him will be more powerful than the sadness without him. Sending God’s peace and consolations to you. I am glad you could be with your husband when he needed you. God bless you, Amy

[Amy Clark]

Anita,
My friend, it seems that your question would best be asked of someone who knows you and sees you regularly. All of us here are not in that position and I doubt many of us want to speculate on what the “right” answer is for you. That being said… Yes, what you describe can happen at the end of this life with MDS, but it can also happen during treatment. If transfusions are your only treatment, then I believe that you (with input from a doctor or a son or a daughter) can decide when the transfusions are giving too little benefit. For some persons with MDS it is when the transfusions only last a few days, for others it is when the transfusions don’t give any benefit at all. I will pray you can make a decision in peace about them. I will pray you are also able be close to God no matter what happens. Sending hugs and prayers.

[Amy Clark]

Suzanne, I am sorry this is progressing so fast. It is a terrible disease and I know you are concerned for him. I agree with the above. It seems like a big deal to “not trust” your doctor, but you are only doing your due diligence. Think about it this way – I guarantee you that his doctor would seek a second opinion at a specialist’s office if he were in your husband’s shoes. No harm done by getting a second opinion.
My husband was satisfied with the local hematologist until we saw a COE MDS specialist doctor. They are just more aware of more options and have clinical trials if you are interested. Venetoclax is what we will “ask for” when my husband’s Dacogen/Inqovi stops working, whether to add to it or start anew with Vidaza + Venetoclax. I will pray for you both, but don’t nag him, he needs your love and gentleness. Just try to be logical with him and then pray hard.

[Amy Clark]

Hi Michael, I am sorry you all are going through this right now. This disease is so very hard, but I am glad to hear you have found some support through hospice. I will pray that your grandfather has time to come to peace with God before he dies and I will pray for your family during this difficult time. Thank you for posting. We appreciate your show of love for him.

• This reply was modified 2 years, 3 months ago by Amy Clark.

[Amy Clark]

Mark, there may be some other options. Call the LLS number below. I will repost the most important paragraph in case you didn’t see the above post from June 26, 2020. We will keep praying for you. Amy

In case your stem cell doctor yesterday didn’t know to mention them, there are clinical trials available for AML patients who have completed induction and/or consolidation but who chose not to or cannot proceed to transplant. The LLS Clinical Trial Support Center can do the legwork for you in finding one or more you may qualify for. They are open M-F 9-9 EST. They also know about grants for co-pays and other medical expenses, and other resources. They can search clinical trials based on your area, mutation, places you are able to travel to, or other parameters. You might consider calling them. I did a “test call” for you just now and even learned that they will do the same for MDS patients and have grants for us as well. I had no idea… Here is the number: 1-800-955-4572.

Our own MDS site also has a listing of clinical trials, but since you are now an AML patient, the LLS organization (lls.org) likely has more for your particular situation.

Lastly, it can be daunting to do all of this alone. If you ever need someone to listen or mull over options or just to vent, please feel free to call. My husband (a former Ironman) and/or I (a former oncology nurse) would be more than willing to take the time to help you however we can from afar.
832-540-4214. God bless you. Amy

[Author]

Posts