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Viewing 9 posts - 16 through 24 (of 24 total)
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  • 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..

    in reply to: Transplant in 2 weeks #45117
    Amy Clark

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

    in reply to: MDS and Hospice #45116
    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.

    in reply to: MDS and Hospice #45115
    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.

    in reply to: LOW BLOOD COUNT #44360
    Amy Clark

    Hi Brett and Wife,
    I am sorry you are going through all of this. It IS a ton of information to try and assimilate in a short period of time. Be kind to each other while you figure this “new normal” out. And after.

    The main numbers on your regular blood labs to look at are the ANC (Absolute Neutrophil Count or Neut # on your list), the platelet count and the HGB (Hemoglobin on your list). On your bone marrow biopsy they look at the blast count as the key marker for progression of MDS. Different hospitals have different thresholds for transfusions of platelets and red blood cells. Ours is once you drop < or = to 12,500 platelets or a HGB – hemoglobin of < or = to 9.0. The ANC is considered neutropenia under 1.5 at the hospital where we are. That means your husband is at greater risk for infections as you know. His is quite low at .5 and they may put him on prophylactic antibiotics or antifungals or antivirals for his protection. Or they may not. It is up to the doctor and their protocols. The low ANC is why it is so important to watch for a fever; he has a very weak immune system available to fight against germs.

    Hang in there. The most important thing you can do at this point is probably find a doctor you are confident about. The Centers for Excellence have been evaluated by someone with much more experience than I, and even though I liked our hematologist, the ones we are seeing know are much more knowledgeable at the CofE near us. Good luck and God bless you. Amy

    in reply to: Mortality rate MDS RAEB II #44312
    Amy Clark

    I forgot to mention that MD Anderson is not recommending the BMT yet, as the onc wants to try Dacogen (not a good success rate with ASXL1, but the risks for harm are lower than what they are comfortable with with a BMT) but we have been through all of the initial info and bloodwork “just in case.” The onc said he hopes we never have to look at a BMT b/c the risks are so high. That is a different kind of hope, huh?! But, I think when we hit blasts in the mid-teens they will hold out a BMT as our only option. That last statement is researched conjecture on my part.

    The onc was straightforward also when we asked about side effects after a BMT and their rates. We were extremely appreciative of his candor as I could not find statistics on those the way I could on the above.
    God bless you.

    in reply to: Mortality rate MDS RAEB II #44311
    Amy Clark

    Hi Tom,
    I couldn’t find info for 5 years after a BMT, but the site below gives average survival rates (Survival Probablility Rates) for MDS RAEB (does NOT separate into EBI or EBII) at 100 days, 1 year and 3 years out.

    For instance, my 52 yr old husband (RAEB (I)) would be looking at 83%, 57%, and 40% (for the three time frames mentioned above) with an unrelated donor match. The site is a treasure trove of statistics and you can break down the variables by transplant center, disease, age, gender, race, type of match etc.

    Here is the general page:

    Here is the specifics page I pulled the above stats from for our situation:

    I hope that helps.

    I am praying for you and your struggle. It is a very difficult decision with many factors, obviously, that are different for everyone. For us (my husband has the aggressive ASXL1 mutation and RAEBI) we struggle with the BMT process itself and outcomes, yes, but also with the time spent away from our six children, one of whom has special needs, (ages 10-22) when they may need us the most as they struggle with the real possibility or actual event of his death while away from home. And that is if we can garner the long term support to care for the children and his 88 yr old father who lives with us and is ill. We seriously wonder how we can choose that option (BMT) when “known” time with respective Dads (both Dad and Grandpa) and children now is so precious, maybe too precious to gamble with.

    As a wife, mother and daughter-in-law I can only pray that 1) We all stay close to God and 2) That we make good practical decisions. I will pray the same for you. God bless you, Tom.

    in reply to: Brief Uncontrolled Shaking no fever #44267
    Amy Clark

    Hi there! My husband shakes/ has chills at night when his Hgb. is dropping. It usually occurs when he needs a transfusion. Hope that helps. That may not be the case for you.

    in reply to: New to MDS #44046
    Amy Clark

    I am so sorry that your mother passed away so soon after you found out what was going on with her. However, it sounds like being near to her in her final days was a comforting for all of you. I am glad you were able to be there for her during that time, but sorry that it was so unexpected. I will pray for peace for you and your family. I will also pray for your mom.

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