Forum Replies Created
-
AuthorPosts
-
MNladyslipper
MemberJack,
I hope everything will be a go for the 11th. I had not been told about the Hope Lodge, but will check it out with our Social Worker. We were told about the apartments for rent with the shuttle back and forth. We are tentatively scheduled to begin the outpatient testing on the 21st. I will look you up. As always you are in my prayers.
BevMemberCarruth,
I just finished a good book, called – Ninety Minutes in Heaven. It tells the story of a minister who was declared dead by paramedics. He went to heaven and then returned to earth ninety minutes later. In his book he talks of his long struggle to recovery. At first he doesn’t allow anyone to help, but after he is counseled by another minister and admonished for not letting others help, he relents and seeks help. The message is that friends and family want to help. They want to do things for you and if we don’t let them, then they are robbed of that joy of being able to help. It is not quite the same situation as your MIL but you might find help from the book. Maybe, she is opposed to having a stranger, how about a group from her church or neighbors who would be willing to come in and be with her a few hours a day? Just some ideas hope it helps.
BevMemberMario,
Revlimid is a chemotherapy drug. It is not as toxic as inductive chemo drugs. Mary is right – it is not a cure, but some have had amazing results. Check this site out for listings from Kirby. He has had great results. It was working for my husband. He went almost three months without a transfusion before he had a surgery for diverticulitis. He is now in his first cycle since the surgery, but will face a transplant at the end of the month.MemberMario,
Revlimid is most effective in extending the time between red blood transfusions – giving the patient a better quality of life. Our doctor from Mayo told us that it will usually take care of the 5q chromosome and in about a third of the cases it will reverse some other chromosome damage. I am not sure about the blasts, but if Jack says it works – I’d listen. He is an expert on the board. He has done his research and is very saavy. Good Luck!MemberRebecca
My husband is 6′ and was about 220. He is now about 190. He has had a lot of issues since diagnosis in late January. He had an attack of diverticulitis in April,a sinus infection, mouth sores, surgery for the diverticulits, a couple of crashes where his hgb dropped quickly, and a helicopter transport to Mayo because they thought his Revlimid might have been causing blood clots. He has had five transfusions. They use two cords for large adults. Research seems to be indicating this is the way to go when you don’t have a 100% match. Cord blood cells are naive and will usually engraft and do what needs to be done to restore a healthy marrow. The risks are about 33% it will take and the recipient will go into remission, 33% it will fail and nothing will be changed, and 33% that he will die. But when faced with the certainty that he will die without it, the odds are in our favor. We are doctoring at Mayo in Rochester, MN. They do not do cord blood, but have referred to Fairview at the University of MN. They are probably the leader in cord blood transplants. To my knowledge, there are only four centers in the U.S. that do cord blood, but more are attempting to be certified. Hope this helps.
BevMemberRebecca,
My husbands counts are very similar to your husbands. He has a lot of chromosome damage however. He is tentatively scheduled to go to The Univ. of MN – Fairview on July 21 for a double cord blood transplant. They couldn’t find any other matches. But we are cautiously optimistic, it sounds as though the cord blood may be the wave of the future. You may want to research cord blood transplants as a possibility for a transplant – sooner, rather than later. His age is in his favor. Good Luck!
BevMemberJack,
Please keep us posted. My husband is tentatively scheduled to come to Fairview on July 21st to begin the testing for his stem cell transplant. Good luck to you and your wife.
BevMemberThanks to all of you. Zoe, I am scared but cautiously optimistic. Ever since his diagnosis in late January it seems we have had one crisis after another. Almost every time we have planned a trip to get away – we have had to cancel it. It seems as though the MDS is progressing rapidly and while Barry is still fairly healthy we want to go ahead. It doesn’t seem wise to wait until he is terribly sick. Fairview wanted to transplant back in March, but Mayo wanted to try the Revlimid first – but they have been advising us at each visit that we were heading toward transplant. I hope that I will be up for the surgery – I am having trouble recuperating fully because the stoma is not cooperating. I go again this week and will also have another ultrasound on the cyst. Barry will have his BMB on July 14, and we will visit with both of our doctors – it will be a full day.
I pray every night for everyone on this board.
Thanks for your support.
BevMemberJust another update. I ended up back in the hospital this time with a cyst on my kidney. They think it is and abcess from the toxins that spilled over when the diverticuli ruptured. I was in for three days and I am now back on oral antibiotics for two weeks. We went back yesterday for an adjustment in my fittings and will go back next week also. My husband had his CBC yesterday and his hemoglobin was at 8.1. Rochester called to see if he wanted a transfusion and he said no, he wanted to hold out a while. They told him to get to the emergency room if he became weak, dizzy or short of breath. He went fishing today and is on his way home now. It sounds like he had fun and is feeling ok.
The Univ. of MN called this afternoon and said his dr. had called about proceeding with the transplant! They were ready for him to come next week, except they want a current bmb. I explained what I am going through and they suggested we wait a few weeks until I am feeling better, but would like to tentatively plan for July 21 for a week of tests and then proceed immediatly after that. Wow, is sure seems like it crept up on us fairly quickly. But I think we are ready to get on with the rest of our lives. He does not have a matched donor so they will be doing cord blood. I will post a new thread when plans are more finalized. Keep us in your prayers as you are in mine.
Thanks!MemberMiracles do happen, know that you and your father and family are in my thoughts and prayers.
MemberIt turned out that Barry’s hemoglobin had dropped really low 6.8. He also had just started the Revlimid again without resuming an antacid. They explained to us that chemo affects the gut, the skin and the hair follicles. They believe the combination of restarting the Revlimid and the low hemoglobin caused the chest pains. The result was that he was flown from our local hospital to Rochester by helicopter to be sure it wasn’t blood clots or heart. He ended up getting a transfusion of two units and an overnight stay and then released to come home again. They are having a very hard time finding blood for him right now. They said this puts him in a tight spot for a transplant. They want to have 30 -40 units on hand and right now they don’t have any!!! Thanks for thinking of us.
BevMemberThanks for the well wishes. I am home now. I came home on Wednesday. Barry and Brandi are at the Emergency room as I type. He had a sudden onset of chest pains. He just restarted the Revlimid on Tuesday, so clots was first in our mind, then heart, or hopefully muscle spasms. I will keep you posted.
MemberWarren and Frankie,
My husband has developed 6 antibodies. The worst is the little “e.” It occurs in 2% of the population. They only have two units right now at Mayo and are worrying about his transplant. They said he will need 30 – 40 units. Right now they have slowed his cbc’s to every other week to avoid taking unneccessary blood. They don’t want to transfuse anymore when it drops below 8, but only by symptoms. They hope he can go to 7 without a transfusion. He is only three weeks out of the hospital for surgery for diverticulitis. He restarted his Revlimid on Tuesday. Tonight he is at the emergency room with chest pains! We are concerned about clots or heart. I cannot be there. I just got out of the hospital on Wednesday after a 10 day stay and surgery for a perforated colon. MY God, when it rains it pours!!MemberWe got to come home on THursday. His hemoglobin was at 8.2. His neutrophils were up to .61 and his wbc was 1.6. Those are higher numbers than he has seen in quite a while for the whites. Platelets were back up to 134. He still is battling a low grade fever between 99 – 100 but other than moving very slowly he seems to be doing fine. We return to Mayo on June 9th to meet with the hematologist again.
MemberMy husband has his checked weekly. He is just recovering from surgery to remove a part of his colon. There it was checked at least once a day and sometimes twice. But that is to be expected as his cells were busy trying to heal the surgical site. He has been on Revlimid, but it was stopped a week before the surgery and will not resume until we see the doctor on June 9th because of risk of clots.
-
AuthorPosts
