[Anne Ellis]

Hi Malissa,

I realize that I never replied to you to thank you for your kind words! Thank you for caring and replying with information and encouraging hope!
Wondering how Leon is doing? I happened across this conversation from months back and wanted to check in. I visited with Gloria today. She is very weak and miserable but hanging in there. She is on palliative care, and they have told her to expect her time to be a few months to a year. It is so frustrating because we don’t truly understand why. They stated that they freqquent blood transfusions will cause problems but this has been going on for years. I’m not sure if it’s just because the signs that she shows of her energy level continuing to drop and retaining a lot of fluids and a lot of comorbidities.

Anyway I hope we honest doing well and just wanted to check in:)
Best wishes,
Annie

[Anne Ellis]

in my opinion I would go for the transplant while you can,because there are several things that can make him ineligible for a transplant and you may regret it later if you don’t hop on that bus now. my sister has kidney failure and is not a candidate for a transplant so basically all of her options are used up because she gets frequent infections and they will not do a bone marrow transplant if she were able to have a bone marrow transplant it could save her life but now she can’t and so we can’t save her life i..f you can do something that has a chance of putting her into remission permanently..seems like you may regret it if you don’t take the opportunity while you can. bone marrow transplant of course is always risky,but there is nothing now that makes it more risky and if you wait till later it could be more risky. there is also the risk that when you decide you want to do it there is not a donor anymore. there is a risk that he will have comorbidities at that time and not be able to get the transplant. his quality of life would be much better if he has the bone marrow transplant because he will not have to spend a large amount of his time just trying to live….dealing with all the side effects and risks of the medications and transfusions is not fun. it may be working great right now but you will be in a constant roller coaster it’s working and now it’s not working again and will they still do the transplant at that time… being transfusion dependent is a very bad thing. my sister is transfusion dependent and she is miserable. her quality of life is horrible she has iron building up in her liver she is completely exhausted and miserable and constantly needs transfusions. just so you know 8.5 will not be sufficient for your husband to be comfortable over an extended period of time. after a while your blood morphology becomes affected and even when you are at an 8.5 you are still weak and miserable because the blood cells you have enough of them but they are not effective blood cells and so you become sicker and sicker because that 8.5 level is good in numbers but not in quality. all of this would go away if you have the bone marrow transplant.I can tell you that since he is only 59 after a while these treatments stop working and you will be stuck still needing a bone marrow transplant having that risk but maybe not having the best donor. I don’t see his long-term survival and quality of life being great without a transplant. when the doctor says there is no reason to rush I would say what about the fact that there may not be a donor later what about the fact that his quality of life could be dramatically improved for the many years that he still has left he could have 20 years of misery or he could have 20 years of fun. there is also risk in taking aronasp and all of those drugs they can cause blood clots so they are not completely without risk either you will need more and more and more of it which means more side effects and more risks…I have to say I feel sorry that I am pushing so much and I know it is because I wish so much that my sister could have the transplant and we would do anything to be able to get it….if you could see it from my shoes where my sister is almost ready to die because she can’t have a transplant and she has been through all of the treatments that you were talking about and they have stopped working, then you would be able to see it so much clearer. I wish you the very best and I know that is still a very very difficult decision.
I would not give advice to someone who did not ask for it but since you asked I wanted to give you a very Frank Opinion from someone who is living the life without the transplant.. it’s not anything I would wish on anyone.. she is miserable …sure he may live but your lives will be completely taken over by treatments and side effects appointments, ERI infections, (no WBC)…there are many risks with not having the bone marrow transplant. he can become dependent on antibiotics because when your blood cells are not working properly you easily get infections he could die from an infection there are just so many risks that they don’t really discuss with you on the other side also. my sister probably doesn’t have very much longer to live. I am her twin so I would be her donor if we could get it, and and I am just heartbroken that we can’t do it.
I truly apologize if I sound way too pushy….I don’t even know you LOL..I know it is very scary. we (my family) are just living the life of not having a transplant option and it’s just not a good thing at all.the doctor make it sound so easy that you could just live this way and be in remission …it’s not really in remission you would be living on the edge of what happens next when the medications stop working… he may experienced life-threatening side effects,and like I said there may not be a donor at that time, or he may not be eligible because of comorbidities, infections, bleeding problems,breathing issues heart issues so many things can take you off the list ….that to me is scarier than anything. I so wish we were in your shoes right now and had the choice 🙁
I have to say it was just awful that they put us through the process of finding out who is the best donor , we already knew it would be me…and hadn’t even evaluated her to see if she is eligible so it was so heartbreaking to find out that I am the match for her but that they decided that she is not eligible the reason that happened is because she also needs a kidney transplant so they would not evaluate her for that until they decided that they had a good enough donor of course I am her identical twin so we already knew that but they had to confirm it all, so did the swab and wa for results only to find out that they will not do it. we are in California and my sister traveled to Boston General for all of this work up…I just sent my swabs in the mail.

anyway I wish you the very best in your decision and I’m very interested to hear what you decide and hope that if you do decide not to go with the transplant that he does continue to have good health with the other options

[Anne Ellis]

I’m so sorry to hear that your father passed away I know this is a tragic and sudden loss. I am working concerned that the blood transfusions caused a condition called DIC. it is very common, my father-in-law had it when he was hospitalized he was 88 years old not sure how old your father was. he got his from having an IVIG treatment however it can happen due to blood transfusions also. my twin sister has MDS and my father-in-law did not, but I have dealt with a lot of issues over transfusions and other treatments. the platelets are a different issue the blood transfusion would have been because of red blood cells it sounds like his platelets were not low or they would have given him whole blood. so it seems strange that the cause was that his platelets dropped that’s why I say it sounds more like a reaction to the transfusion. there are many different types of reactions but d i c sounds suspicious to me. I don’t think that MDS should have caused this much trouble all on its own and I think there’s also the possibility that he transformed immediately to leukemia. I feel like there are a lot more answers that you should have had. if you have any other questions please do not hesitate to reach out my sister has had MDS for about 8 years and she has been having blood transfusions every 3 weeks for the last couple of years she has also dialysis patient. if your father had a lot of other comorbidities that would explain what was going on he also could have had an infection. did he have any symptoms like a cough or any urinary tract infection signs? infection can severely affect your blood cell counts as well.it really sounds like he was on a very slippery slope right from the start and not just having a low risk case of MDS like most people do who are first diagnosed with MDS. can you tell me what classification of MDS he had?

[Anne Ellis]

Hi,my twin sister Gloria gets many of the same mentions she also has ring cideroblastic MDS.I feel that your husband is going down the same path.she’s just a little bit farther down the road.my sister is Complicated by the fact that she was born without her bladder and she is an ostomy patient and has frequent kidney infections.since she does not have the proper blood cells to fight kidney infections she often sees these changes that you are mentioning. we have noted that when she has an infection the red blood cell and white blood cell morphology and changes quite a bit.I mentioned that she has a little further down the road because she frequently needs blood transfusions about every 2 to 3 weeks.it should be noted that she requires blood transfusions at 8.5 hemoglobin because her red blood cell morphology is so compromised similar to your husband’s morphology. a person with normal red blood cells would not need a blood transfusion at 8.5 but because her red blood cells do not operate properly she needs it sooner and that is something to keep in mind because she becomes weak when her hemoglobin is at 9.5 when she used to become weak one or hemoglobin is at 8.5. they still wait until REM is about 8.0 to give a transfusion because she had had so many.her ferritin is over 2500 and she has been on chelation for a couple of years. she was surprised when they asked her to go on generation because it was not that bad but if you don’t start early enough you’re always playing catch up so I would definitely think about starting too late and although it comes with its own risks.my sister is also on dialysis due to her kidney issues so that adds a whole new equation to the Ball Game. dialysis patients are often anemic even without having MDS.

one of the reasons I am replying is to tell you that I am in the same boat where I want to constantly research to find out more. I don’t think we should feel guilty for this we are trying to gain a sense of control by having the knowledge available when we arrive at the ER for an unexpected visit or with new bone marrow biopsy results. it also gives me something to do at 3:00 in the morning when I can’t sleep.she just texted me last night they’re hurrying alone is 7.2 which is extremely low for her. as I mentioned her red blood cells do not operate properly so 7.2 can be pretty dangerous and it was just 9.4 a few days ago so it makes me feel like she can drop so quickly and it could become an emergency overnight. she doesn’t have a platelet problem but she also does bleed easily. so sometimes the numbers can be confusing because even though her number is of her platelets aren’t that bad it’s because the platelets do not operate properly when there is that morphology involved. I guess they get clumpy and stick together and do not carry the oxygen nobody should. we are 58 years old or 59th birthday is end of September and I’m just hoping she makes it to our next birthday. I don’t know if I’m just thinking negative but it is beginning to feel like we are close to the end. that’s why I say begin that relation as soon as possible she just had an MRI in her liver is being affected by the iron and the chelation.
this brings the old saying what doesn’t kill you makes you stronger to a whole new level. that chiliation may kill you or it may make you stronger. she takes both arinesp and red Roselle in hopes that she would not need blood transfusion so frequently,but these drugs also are high risk of blood clots especially when you are also on dialysis. hopefully your husband will not need dialysis anytime soon and this will give him a much better quality of life and chance of responding to the medications. MDS is so hard because you always want to know how much longer they have and you have no idea they say low risk but and there’s nothing low risk about it really. even low risk patients only have a 5-year survival rate in case you didn’t know. it only means that it is a low risk of chance transforming to leukemia. MDS is a fatal illness all on its own so saying low risk can be deceiving in my eyes. not trying to be a downer I just like you like to sit in a place of informed reality to me is less scary than assuming what you don’t know won’t hurt you…I wish you the very best, and if you have any questions about my sister’s treatment or her path. I am very open to sharing our experience. we’ve tried just about everything and up until now it has been working…She has been fighting to the mail and I feel like sooner or later she’s going to get to tired. she literally spends every day just trying to stay alive she has dialysis 4 days a week and she has injections on the days that she doesn’t have dialysis and she has to drive almost an hour to get the injections…she is on very heavy duty antibiotics for the infections almost every day…I don’t know if your husband has a problem with fighting infections but you may want to look into that …like I said when Gloria’s blood changes it is often because she has an infection. for her it is her kidneys but it can be pneumonia or intestinal infection just about anything. wish you the very best with the appointment that you have coming up and hope that you get the answer that you need…and hopefully with that, new treatments it’s almost good when there is a change because then you get an opportunity to have a new treatment wish may prolong and give him better quality of life 🙂 of course that is the goal.don’t feel guilty about reaching out and trying to get more information and trying to learn as much as you can about something that is completely taken over your life.I think it gives us a sense of security to know as much as we can…it’s like an ugly monster if you can see it you can fight it!
Fight on!

[Anne Ellis]

Hi Erin,
Thank you so much for your reply!I wish you weren’t fishing uncertain diagnosis as I am but I will say that you are right it does help to know that there are others who understand how I feel when struggling with actual answers. I did speak with the cannot assess who spent a very large amount of time with me but still told me that my particular variant is uncertain to the point where if I or my children have specific symptoms they would then we classify it and it would not be uncertain. in other words we would be the deciding factor for them to say yes it is exactly a pathologic illness. I saw my primary care doctor this morning who completely pooh-poohed the whole idea and despite the fact that I have the letter from the geneticist. he did in the end agree to send me to hematology because he can’t exactly not do so if I were to end up with leukemia he would have his butt died, lol. I have had my white blood cells be right on the cusp exactly at 3.8 for two years it sometimes goes down to 3.5 but it never goes any higher than 3.8. I was told by a hematologist when my son was sick that it is completely abnormal to not have fluctuations in to the higher levels. The normal high being 13 means that at some times you should be in the mid-range and sometimes you may be low but the fact that your white blood cells do not move around means they’re not operating properly. I’m going to go look up CCUS and find out more about it. Have you’ve been diagnosed with CC us and just don’t have very much information about it or is the diagnosis still in question? Is it a genetic problem like mine is? I just wanted to check in and say thank you for your reply. I will be seeing a hematologist probably within the next few weeks I put in a call but I have to wait for a call back in order to schedule an appointment. Nobody ever actually answers the phone to schedule an appointment anymore. I have to admit that being that they are hematology and oncology I am not their most urgent patient which I am thankful for. I am willing to take a back seat on this one. I do however have thickening in my stomach and a lot of stomach pain and have lost 25 lb in a short Of time. I had no idea that that actually could be symptoms of leukemia so I’m a little more scared then I thought I should be. I also am postmenopausal and just this morning found some spotting. Uggh! Just seems like every symptom is not enough to really be anything but enough to make you go crazy. Thank you so much for replying and understanding. I wish you the very best and hope that you have answers as well!

[Anne Ellis]

Thank you very much for your response. It is as I suspected. From reading posts here, this is nothing to fool around with.
Wishing you the best,

Annie

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