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MNladyslipper
MemberI can only tell you of my husband’s experience. We first discovered blasts in the blood of 1%. Every time he went off chemo they came back at a higher rate. When he died they were in the 90% range. It took from Sept. to March but there were 5 rounds of chemo in there to knock it back. Sorry, maybe someone else has better news.
BevMemberMy husband had 11 chromosome abnormalities when he was diagnosed among them were the 5q deletion, monosomy 7 and 22. He had never had a previous cancer, nor was he exposed to any chemo or radiation. They told us right away that because of the chromosome damage he was at high risk. We went to the Univ. of MN and they recommended a transplant right away with cord blood as he didn’t have any donors. We waited until July, but by then the AML had begun. HE got into remission after only one induction but then was found to have ALL. He tried five more rounds of chemo – two were very experimental. He passed away the first part of March. He too was always very healthy, an athlete, a coach, a referee. This is an insidious disease. We did meet others that did have success. It is a battle whichever way it goes. If you have a window of opportunity for a transplant TAKE IT, don’t wait.
Jack, I agree Easter was hard, but every day is hard right now.
BevMemberLaurie,
You are fortunate to have this diagnosis over others. Many people with 5Q have been very successful with treatment. Revlimid is specific for this type of MDS. In many cases it will reverse the chromosome damage. Others will add more I am sure, but please be comforted that there are many success stories for -5Q MDS.
Good Luck!MemberJack,
I am so glad you are back on the board. Ricky tells me he has talked to you. I think of you often and wish I had gotten to know both you and Roseanne better. She was a valiant fighter. Another gentleman checked in here at the lodge about a week ago. He also has AML and was going to have the Haplo with the natural killer cells. But, he has gotten double pneumonia and they don’t think he will come out of it. When I compare he and Roseanne the only similarity is the diagnosis and the will to live and those who love them. To look at him, he looks healthy and doesn’t appear weak or worn out by the disease. It goes to show I guess that you never know who is going to survive their fight and who isn’t. It is as you said a horrible, insidious disease.Barry and I continue to battle for remission. His MDS and AML were in remission at the last bmb on Sept. 8th. But, now he has ALL. Noone here has ever had a patient that has had this happen. They call him, bizarre, exotic, strange, and very, very rare. He will have another bmb on Thursday. We hope it will be empty so he can rest a couple of weeks and then get his transplant. I worry as he gets weaker and weaker.
BevOctober 2, 2008 at 9:44 pm in reply to: I need a BMT to live but have no insurance. Do I just curl up die? #21438MemberRoger,
I can’t imagine. My husband’s bill is over $360,000 this year. That doesn’t even count the prescriptions. Revlimid was $17,000 a month! We are not to transplant yet. We are fortunate to have the insurance. I don’t know what people do without it, but pray that you find out how to get treatment.
Good Luck!
BevMemberMy husband is now in remission from the MDS and the AML, but now has ALL!! He was in the hospital the whole month of Aug. to get the AML into remission. He was in for 19 day to treat the ALL. He has two more weeks as outpatient. The treatment is totally different. He will have a bmb next Thursday. Hopefully we will then proceed to transplant. They still have two cords that match 100%.
Sandy, it is my understanding that anyone undergoing transplant is given about a 33% chance of survival. However without it, Barry was only given a few weeks to a few months with this new diagnosis. We will go for that 33%. I have seen a lot of success stories here at the Hope Lodge in Mpls.
Jack, so sorry to hear about Rose. I keep you in my prayers.
Bev
Memberbianca,
Try this website:
http://ubb-lls.leukemia-lymphoma.org/cgi-bin/ubbcgi/Ultimate.cgi?action=intro
They have several areas to explore. I have found it to be quite helpful – especially the Blood and Marrow Stem Cell Transplant forum.
Hope this helps.We are currently at Univ. of MN Fairview, going through chemo regime to get blasts down so my husband can get a double cord blood transplant.
Bev
MemberWe have started chemo. Barry is getting ARC-C for seven days continuously and Idarubecin for 3 days. Today is day 2, we will do a bmb on day 14. He is inpatient for 28 days and I am staying at the Hope Lodge. So far I have been spending 12 hours a day at the hospital, but hopefully that will abate a little as we settle into a routine. I will ask around for you Jack. We are praying that we only need the one round of chemo and then can go right in to the SCT. Oh, he is on an antifungal medication and they are doing cultures to try to determine what it is for sure. They said we probably won’t have any side effects until weeks two and three. BEv
MemberWell, we are home again. We went to Fairview, but Barry has an infection, so he is on antibiotics and will return next Monday to start treatment. He will be on Ara-C and Idarubecin then recovery before a biopsy at 14 days. The hope is his marrow will be empty. Then two weeks to allow his counts to recover and another biopsy at day 28. The hope is his counts will be recovering and his blasts will be done so we can proceed with the transplant. All of this will be as an inpatient. I will be staying at the Hope Lodge. It is very nice, we stayed there last night instead of driving home last night. We plan to drive up Sunday afternoon and settle in, before Barry checks in on Monday. Thanks for the thoughts and prayers.
BevMemberThanks Jack and Jen for the info.
We got news that they are going to be treating him with Ara-c and idarubencin at Fairview. We go there on Monday. It will be inpatient therapy. They want to get the blasts down and go ahead with the transplant. So, Jack I will look for you at the Hope Lodge. Jen, my husband is 59 and says the same thing about being a grandpa. He has worked his whole life to be able to retire and enjoy being “Papa.” I guess there is a lesson to be learned there. ThanksMemberI found out that these are two separate drugs
idarubicin and ara-c. They are commonly used to treat AML.MemberKen, There are a lot of people who have had success with transplants. What are your blasts? Where are you thinking of going for the transplant?
Check out the following site – under transplants. They seem to get a little more action on this site because it is broader, not just MDS.
http://www.leukemia-lymphoma.org/ubb.adp?frame_url=http://ubb-lls.leukemia-lymphoma.org/cgi-bin/ubbcgi/Ultimate.cgi?action=intro&item_id=9388
Good Luck!
BevMemberYour dad is very young. Why doesn’t he want a bmt? My husband has a lot of chromosome damage with RAEB 1 and is considered very high risk. We will begin the protocol tests the end of July for a double cord blood transplant since we could not find any adult matches.
MemberI don’t know about the second drug, but Revlimid will drop all counts until it kicks in after 2.5 – 3 cycles (months). Then, it will help to stabilize red counts. My husband’s hgb hangs in the middle 8’s, neutrophils are usually between .2 – .4 and wbc around 1.4. The doctors don’t ever seem too concerned about the whites – they just say to be careful – practice good hand hygiene and we can always use antibiotics!
MemberIt is common for hgb to drop while on IV’s. It should rebound when they are removed within a day or two.
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