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Mary4Mike
ParticipantRC,
I agree about the other forum, but you find answers here, too.Ask your doctor for literature on a neutropenic diet. If he doesn’t have any, look it up on the internet. You have to be careful with raw food washing, etc.
MDS can turn to leukemia. There is no time frame – everone is different. They will watch for changing labs and also changes in biopsy reports. It may never convert to leukemia. The only cure is transplant. The chemos they are using aren’t cures. Again, different results for everyone. There is no tried and true regimen.
Your husband should be careful when he returns to work. Hand washing is big…..always carry hand sanitizer. If his counts are low enough or if a lot of people are coughing (we are coming into cold and flu season) perhaps he should wear a mask.
His preexisting conditions (excluding blood pressure) would put him at risk only if they offer an avenue for infection.
We are here for questions. Please ask. Hang in there.
ParticipantI don’t really have answers to your questions, but I wouldn’t drop my insurance until you check out all your options. You need to make calls to those who handle Medicare such as Social Securty Administrations.
All the best! By the way, do you have MDS?
ParticipantSally,
My husband had a stem cell transplant October 1, 2009. He is 66 years old. He also had low intensity conditioning. His regimen was Fludarabin and Busulphan. He also did a 100 day round of Vorinostat as a clinical study to fight GVHD. Prior to transplant, he did 10 rounds of Dacogen. The side effects he experienced from that were so much worse than the transplant experience. Everyone’s experience is different so all I can tell you about is his. He literally flew through the whole experience. His donor was his sister and she was a perfect match. As you stated, this raises the odds for success. He came home on Day 12 and was blessed to never have to go back in. He has had some GVHD, but this is a good thing. Because of having over 140 units of PRBC his ferritin was high and this caused some liver enzyme issues. These were resolved when he began phlebotomy over a year ago. He also took Exjade for a year prior to transplant when he was TX dependent. His ferritin is slowly coming down now.
I am sorry to hear that you have to have a transplant, but it sounds as if you have been blessed with a matching sibling (rare) and low intensity conditioning. A lot of centers are doing full body radiation prior. We really did not want this and were happy to find a Center of Excellence that agreed.
You will be in my thoughts and prayers. If you can, keep us posted. Also, if you have questions, don’t hesitate to ask!
Mary
ParticipantWhat a blessing – no transfusions for 11 months! It is wonderful that your journey with this disease has been somewhat uneventful for the most part. It is as if you are in remission – another blessing because we don’t hear about that very often. All the best to you!
ParticipantMy husband never had pain associated with MDS. His complaints were fatigue, heavy chest, heavy legs, shortness of breath, no stamina……all indicative of low HGB. I would guess the sinus infection is the cause for his discomfort….not a fun condition.
ParticipantMike had pneumonia after taking Dacogen, a treatment for MDS. His whites had been knocked down to a nonexistantant state. He had a fever. He was hospitalized 3 times in this same state and until the fever was under control, the antibiotics (broad spectrum) never did anything. I remember they used Levoquin and I believe Vancomyacin sp?. I am sure that they have done the blood cultures, etc. (where they bring the little bottles out) We never learned a source for the pneumonia, just that being in such a weakened condition, you are prone to contracting most anything. Once the fever broke, they usually released him. Has he had the rigors with the fever? Mike had this and it wasn’t pleasant. The only thing that we found that helped this was ibuprophen. The hospital is big on Tylenol for fever, but it never helped the rigors. We let them know of our experience at home and they went along with it.
I hope that once they get your husbands fever down, he will begin to respond to the treatment for pneumonia. A side note – as long as he has a fever, we found that transfusion was futile. It never raised his HGB or his platelets.
Glad you are hopeful. It is what gets you through this. You only have to handle this one day at a time – Thank you, God.
ParticipantI’ll bet you ARE climbing the walls waiting! How exciting!!!
Hope the transfusion gave you a BOOST!
You, your wife, and that new little one are in my prayers!
Mary
ParticipantHopefully, he hs already had a BMB because that is the only way to truely diagnose MDS. Be gentle, but firm with your brother. He will have a lot of doctor/clinic contact going forward and he is going to want a staff that is available, compassionate, and knowledgeable. You will find that the nurses are a great source of information. We have been involved with 4 different clinics and they have ALL been great. Sorry to hear that your brother had this experience.
ParticipantI agree. I would push for a sooner appointment. I would think that the clinic would be a bit more sympathetic considering the mental distress this can cause. If not, and they are that busy, I would consider looking for another doctor.
ParticipantBob, I am so sorry to hear about this. I haven’t heard about anyone actually having this done, but this procedure was explained to us in the event that this happened. Did they store cells from your donor or did they have to harvest more? They used all of Mike’s sister’s cells for the transplant – there were none left over. What chemo did they give you? You might want to post on the Marrowforum.org. They have a transplant portion to their forum. Keep us posted………how is that baby?
ParticipantLisa – I am sorry to hear about your husband’s trials with this disease. You asked if a BMT would be successful at this point. I don’t know where he is being treated, but they certainly aren’t going to attempt transplant until they feel he has the best chance for a good outcome. I hope you are affiliated with a Center for Excellence. I believe they are listed on this forum. I wouldn’t worry about iron overload. If he becomes strong and well enough to go ahead with the transplant, he will then be able to do phlebotomy to rid himself of the iron. If they don’t end up opting for transplant, they will most likely start him on Exjade. You say your husband is optimistic and a fighter. This will help him in the days to come. I am not sure that I understand your question about caregiving. He will need support whether or not he transplants. It all depends on how weak he is when he comes home. The hospital will guide you.
We are here for you if you have questions.
ParticipantIt is Marrowforums.org. Check it out.
ParticipantFirst, it sounds as if your father is stable now. The transfusions have helped and the doctor will keep a close watch of his counts. Bloodwork/labs will now become a big part of his life routine. A unit of PRBC usually raises HGB 2 points. It has no effect on whites or platelets.
One thing I have noticed on this forum is transplant is being offered more and more….especially if the patient is younger, like your dad. They are having more and more success with it. You will want to go to a Center of Excellence. The MDS Foundation can probably help you with that. There hasn’t been much about cord blood transplants on this forum. There is another forum that actually is much more active. I believe it is Marrow.org. I will check and correct if this is wrong.
I understand this is a frightening time. Thank the Lord you only have to experience it a day at a time. Be thankful that your father is getting proper care, is being watched closely, and has a supportive family. This all is a process, but for right now, there is a plan. Listen to the doctors and ask as many questions. Most likely, you will talk with a transplant team at the time of testing for a match. These people are awesome and very assessable. I will be praying for you and your father.
You asked about my husband. He had his transplant almost 2 years ago and is doing great. He was 54 when he was first diagnosed and had his transplant at age 64. We thank the Lord everyday for this gift of restored health.
Stay in touch and check out the other forum, too.
ParticipantFirst, MDS is cancer. It is a hematological malignancy. There are no tumors per se, but as Bob mentioned, it affects other organs and body functions because of the abnormally low counts. As far as life expectancy, there are a lot of factors. If your father is in good health besides the MDS, he will have a better outcome. I wouldn’t be surprised if the doctors suggest transplant because of your dad’s age. They will most likely type him and any siblings he may have. The chance of a spouse matching would be slim and the same for children. The children carry the other parents DNA, too. If no match is found, they will enter the info in the registry for donors which is worldwide. If you want more information, go the MDS Foundation. Much of the info on the internet is dated and will do nothing but frighten you. Don’t read statistics – EVERYONE is different! There have been many posters on this forum that have lived with MDS for years.
If you have more questions, please ask. We are here for you. All the best to you, your dad,and your family.
ParticipantI am sorry to see that no one from your area has responded. I am not familiar with South Carolina and the cancer centers in that area. I am sure that you could look it up online, though.
It sounds as if your wife must be somewhat holding her own if she has had only 2 transfusions this year. The Aranesp must be helping her with her counts also.
Hopefully, someone else from your area will answer you.
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