Forum Replies Created
-
AuthorPosts
-
MNladyslipper
MemberI think we will all miss Neil’s insight and knowledge. I think he would appreciate all of our condolences, but I think he would want us to go on fighting our quest for knowledge and understanding of this terrible disease. We all need to pull together at this time and forge a new strength with his spirit at the core.
MemberJack, I really hope your wife will get to come home this weekend. I pray she quickly regains her strength and is able to proceed with treatment. God Bless!
BevMemberSuzanne,
Just curious, have they looked for a MUD? Have you considered a cord blood transplant? I have read that both have more successful odds than the experimental haplo.
Good Luck!MemberWe just got the results of the second BMB since starting the Revlimid. It says “The chromosome abnormalities previously detected are still present, but the number of metaphases carrying these abnormalitis is less than on his previous bone marrow. I do not think that any definite clinical conclusion can be drawn on this report.”
I don’t know what this all means, but it sounds encouraging to us – even if “no clinical conclusion can be drawn” at this time!MemberPoppyshoppe,
Thanks for the heads up. His doctors have said ok to salads and fruits as long as I wash them. He has been told not to eat “bagged” lettuce. It is more prone to bacteria. He has been going easy on all foods except “soft” foods because of a flare up of diverticulits, which kept him in the hospital for a week.
BevMemberSandy,
I sent her a private message. I didn’t want to share without her permission. I gave her a little of your story and told her you would like to contact her. She may send you a private message through this message board, or go through me. It may take a few days. Be sure to email me at home so I have your home address. It will be easier than always using the board. Continued good luck and prayers.
BevMemberSandy & Rahul,
We were told the only real hope is a transplant. However Revlimid can reverse “some” chromosome damage in “some” patients – especially the -5q deletion. I know of someone in the small town where I live. He was young-late thirties. He had 19 chromosomes that were damaged! He had a perfect 8 for 8 sibling match bmt at Rochester – Mayo. The transplant was considered a success. He had no chromosome damage when the new stem cells engrafted. Unfortunately, other health problems arose after the transplant and he died about 16 mos. after the transplant. His wife assured me that the bmt was considered a success and the other health problems were unforeseen. When we went to Fairview at the Univ. of MN, the doctor there wanted to take him off the Revlamid and put him on Vidaza and get in for a transplant ASAP. We have decided to continue the Revlimid for a couple more months and take a “wait and see” approach. I have been in touch with someone else on this board whose husband has a similar diagnosis and prognosis. They have taken and “wait and see” approach and her husband is doing great two and a half years later with no treatment! The more I read, the more I believe that no two cases are alike. Each individual has to learn as much as they can, weigh what the doctor’s tell them against what their body is telling them and then make their own decisions. It is hard, because we want an expert to make the decision for us – just tell us what we should do. I don’t think the answers are that clear cut. It is a baffling – horendous disease. I am keeping you both in my prayers. God does work miracles!MemberJack,
I have been folowing your posts. You and your wife are in my thoughts and prayers. When my husband was in the hospital a couple of weeks ago, we became pretty upset when his counts dropped really low. Our doctor told us that they would probably recover after the IV’s were removed, they will often cause your counts to drop. We were skeptical, but they did! He saw an improvement right away and they are staying level. We would like to see his neutrophils up to a 0.5, but he is managing on 0.3. He takes an oral antibiotic indefinitely now. He has to wear a mask everytime he leaves the house and is not allowed to do anything that might stir up dust or dirt even with his mask on. I hope this may be the case for your wife. We saw a rapid improvement in the counts all the way around.MemberThe transcript came from the doctor today it said RAEB I with Myleoproliferative Disorder. I don’t know if this makes a lot of difference, but I like the 1 instead of the 2. His blasts are still between 5 and 10%. He had 80% hypercellular activity with striking megakaryocytic hyperplasia and dsysplastic megakaryocytes with many mononuclear forms. The CD34 stain again shows aberrant expression of CD34 in megakaryocytes.- Anyone know what that means? Thanks!
MemberMy husband just turned 59 years old. He is on Revlimid. One doctor says it CAN reverse chromosome damage, the other says he wouldn’t count on it. We doctor in Rochester, MN at the Mayo clinic. We are trying to get blasts down below 5% and then do a stemcell transplant at the Univ. of MN. He does not have any matched donors, so we are looking at a cord transplant. They are suitable for almost everyone if you meet the health requirements otherwise. The cells are naive so adapt eaiser with less gvhd. But they take longer to engraft so hospital stay is longer. You should go back and read my previous posts. I have been following you and your dad from earlier posts. Good Luck@
MemberJack,
Sorry to hear the blasts went up. My husband has been in the hospital for the last week with acute diverticulitis. He was in an isolation room. Some were very cautious, others we had to remind to wash and glove up. They did not need to gown us or wear masks unless they were sick. His neutrophils are at a .2 today. He goes back to Rochester Mayo tomorrow for another bmb to see if the Revlamid is working. We will discuss on Friday the results. Please know that you and your wife are in my thoughts and prayers!MemberNeil,
Wishing you the very best. Stay positive.MemberJust got home from spending a night in the hospital. We went in to the ER of our local hospital last night for severe abdominal pain and fever. By the time we got there fever was nonexistent, but spiked again to 102. They ran a multitude of test and diagnosed diverticulits which my husband had a bout with about a year ago. Hemoglobin had dropped a little to 9.9, and platelets were back down around 160, but the neutrophils remain at a .5. We are now 2 weeks past the last transfusion, so our celebration last week over the Revlamid working may or may not be premature. They started him on IV antibiotics and morphine. They expect he will have to stay for a few days. He was supposed to go to Mayo tomorrow for a bmb, but I am sure that will be postponed now. I will call the hematologist this morning to be sure they are fully aware of the situation and see if anything will change in his treatment. I will keep you posted.
MemberHurray! This is the time for that transplant. A cord transplant can be matched for just about anyone. Blast have to be below 5%. Celebrate this victory and keep asking questions.
MemberGeneric***
Inappropriate content. -
AuthorPosts
