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Amy Clark
ParticipantHi 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.
ParticipantI 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.
ParticipantHi 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!
ParticipantLee, 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.
ParticipantIlona, 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
ParticipantAnita,
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.ParticipantSuzanne, 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.ParticipantHi 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.
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This reply was modified 3 years, 7 months ago by
Amy Clark.
ParticipantMark, 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. AmyParticipantYes, it is the HMA (hypomethylating agent) Dacogen (decitabine) in a pill form with an inhibitor cedazuridine. The cedazurine keeps the Dacogen from being broken down too early. This was previously known as ASTX727 in the clinical trails. My husband has been taking it in the clinical trial and started his 17th cycle today. We didn’t see much improvement until the 7th cycle, but since that time he has not needed another blood transfusion. Yeah! However, he still has blasts and the mutations and dysplasia in his blood and bone marrow, so they don’t consider him in remission. He takes all of the pills at home and goes into the clinic for labs routinely. The first cycle sent him to the hospital with febrile neutropenia.
You have to be really patient with HMAs (Dacogen and Vidaza) as they often take awhile to work.
Here is a link and a quote: “The ASCERTAIN phase 3 study data confirms the hypothesis that by inhibiting cytidine deaminase in the gut, systemic therapeutic concentrations of decitabine can be delivered orally to achieve decitabine systemic exposure equivalent to IV dosing,” said Dr Garcia-Manero. “The data support that ASTX727 could become an oral hypomethylating agent alternative to IV decitabine.”
Hope that helps! Amy
ParticipantHi Mark,
I am sorry to hear you picked up C. diff at the hospital. I hope that goes away soon.I have been thinking about you and your questions. Those are tough questions. Individual patients are so…. different. Mutations play a big part. You are doing the right thing by gathering as much info as you can, medical and practical, before making your decision. Identical twins could go thorough the same transplant and have vastly different outcomes.
I wish it were more straightforward. Some people trade a life threatening disease such as AML or MDS for a chronic disease after a transplant like HVGD and are thankful, as some post-transplant affects are doable with a “regular” life. Some go through a transplant and are not happy with the “new normal.” Some patients don’t make it. Some patients chose to try a clinical trial of a less toxic nature and are still awaiting the outcomes. No medicine is claiming to offer a cure, but some clinical trial meds are showing anti-leukemic affects. Some patients skate through the treatments without a scratch, although these numbers are low from my research. (You were one of these, though, with your chemo!) No one can tell you how YOU will end up being specifically affected by any of these. However, mutations and other personal information can give you an idea of relapse rates somewhat. That would require research, if your doctor doesn’t know right away.
Gather the info, weight the pros and cons, and make the best decision for you at this point in your life. Don’t look back.
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 trialsbased 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. AmyParticipantMark, so glad to hear the good results so far! We are all rooting for you!
AmyParticipantHi Mark,
I am glad to hear from you. I was so sorry to read that you developed AML, but thankful you are receiving treatment and that you have your girlfriend to help you. We have been praying for you. And now I will pray for her too.About your question, you are correct. But don’t lord it over her, the information out there can be very confusing. And she is likely trying to understand all of it for your sake. 🙂
The simple explanation is that MDS and AML are part of a continuum that moves you along largely based on the number of blasts found in your bone marrow and blood – over 20% and you have AML, under 20% and you have MDS. Kind of like getting renamed an executive chef after having been a sous chef. You didn’t “un-become” all of the things that make someone a sous chef, just added on more recognition of new skills and responsibility (and pay hopefully.) And… henceforth, you are known as an exec. chef, NOT a soul chef. Likewise, you will be known as Mark, an AML patient or an AML survivor, not Mark a MDS patient or MDS survivor. (We all know you have more skills than that medical description of yourself, like Mark the Hiker or Mark the Athlete, etc.etc., but we are talking hospital jargon here, so bear with me.)
The other part of this, aside from the blasts increasing, is that the mutations increase in number. Some mutations are only found in AML patients and aid the diagnosis. Some AML mutations “arise” from MDS mutations, according to medical researchers, while others develop parallel to the MDS mutations, according to different researchers. The main thing all AML-important mutations do is increase the blasts. These blasts crowd out your good cells and make it hard to produce proper blood. The type of mutations you have are your calling card for different drugs or drug trials. Typically you just add mutations as you move from MDS to AML.
Finally, depending on what she is reading, she may not realize the subtle difference between reading about AML de novo, which is AML all by itself, and secondary AML, which is what you have if you had MDS prior to the development of AML. AML de novo has different mutations than sAML, (also known as AML-MDC, or AML with myleodysplastic changes.)
I hope this helps and that it is a little clearer than mud.
Thank you for allowing us the insights of going through the process of treatment. Know that we are rooting for you and hoping the best for you, inside and out.
God bless you,
Amy ClarkParticipantTo clarify, his pain started only a few months before he was diagnosed with MDS, when he was also having night sweats, joint pain, fatigue etc. The pain was one of the symptoms that brought him to the doctor in the first place.
ParticipantMy husband has bone pain in his ankles, upper legs, hips and upper back all the time which gets worse at various times during his oral Dacogen cycle (Clinical Trial with ASTX727). The pain spikes high for a couple of days when each of his counts drop, first the RBC, then the platelets, and then the WBC. The pain also spikes severely for one to four days after he is active. Active being walking a mile in the neighborhood or riding a stationary bike for a few minutes. He was doing these activities once or twice a month until the made the connection. Now he barely does anything that active. Along with the pain, his face breaks out in a red rash each time preceding the spike in pain. It is like an announcement that the severe pain is coming.
Our doctor at a COE said that he doesn’t have any patient that has pain BECAUSE of the Dacogen or hypomethylating agent. He said it must be the disease process causing the pain and maybe the disease is getting worse. We will find out more after the next BMB in a month. My husband had pain before the Dacogen started and it never went away even when his counts because more normal, so there doesn’t seem to be progression to us, but what do we know. Lastly, He never had a facial rash come and go like this until he started the medications for MDS. He has fatigue commiserate with the bone pain.
Has anyone else had pain that spikes with the low counts or exercise? Any rashes along with the pain? I am so thankful we can share this information and learn from each other’s experiences.
Praying for all of you out there with this disease and for your loved ones. -
This reply was modified 3 years, 7 months ago by
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