New diagnosis lots of chromosome damage

[MNladyslipper]

My husband (59)was just diagnosed with MDS. RAEB officially an intermediate-2, but doctor believes because of chromosome damage (11 out of 20) that he is really high risk. He started Revlamid four days ago. They have given him a prognosis of 9 – 18 months. He has no symptoms. We found out when he went to give blood and was denied. What should we be researching? Is Mayo the best place to go? Should we get a second opinion? We are still waiting to see if his brother is a match, his sister is not, but the doctor said he may not be a candidate and there is an 85% chance it would return because of chromosome damage. I don’t remember them all, but -5q and -20q and monosomy 7 as well as others. Help we don’t even know what questions we should be asking!

[jaxem]

MN
most of us here are lay people who have gone through the experience but don’t know all the answers. I find that limits out on people’s lives, they can be wrong & usually are. right off the bat, I’d seek 2nd & even 3rd opinions without question! Mayo AZ, not Mayo MN would be an appropriate place but I’d recommend Fairview Hospital (Univ Minn) in Minneapolis by the number of transplants they do (recently completed their 5000th transplant)& number of research grants they have, as well as the close proximity to your home. My wife & I have been there as well as several other northeast facilities and we find they are hands above all the rest; and we have to travel from NJ. Revlimid is geared more for the -5q del chromosome but not so much for others. Monosomy 7 is a common defect & is the same defect my wife has. These defects can change once he is exposed to different chemo regimens. I wonder why a classical approach of induction/consolidation chemo rounds have not been chosen. what is his blast level? I don’t understand why chromosome damage would return in a transplant since the blood is being replaced & taken over by donor’s blood. Good luck to your husband and in your research. Be sure to return here with any of your questions.

[Neil]

If you elect to go to Mayo Rochester be certain to see Dr David Steensma. He is one of the best in the country.
You did not mention his blast level. Was there any discussion on them & how they would attempt to reduce them. Are there blasts in the peripheral blood?
Would also ask about Vidaza and Dacogen. They have been used on patients with RAEB.
There are a few chemo protocols that may help.
The high number of damaged chromosomes will complicate the options.
Would also look at Univ Of MN. They have some recent success with cord blood transplants, but are restricted by blast levels.
Would get all of the best info from the docs available. The Univ of MN and Mayo are close enough to make 2 or 3 opinions possible.

[MNladyslipper]

Thanks for the advice. We are seeing Dr. Steensma this week and we are going to Fairview next week. Fairview sounds wonderful. They will have a social worker assigned to us, something Rochester did not do,even though we asked. They also handle all the insurance and sounded if not positive at least upbeat. I asked the doctor in Rochester about a cord transplant and he said it would not be possible for a man just over 200 lbs. Fairview on the other hand said it would not be a problem. They do double cord transplants. We found out today that my brother-in-law is not a match, so we were pretty down until Fairview called us. I am pretty impressed so far and looking forward to Tuesday’s appointment.

[Neil]

The Univ Fairview has released some impressive info but be sure to ask questions!!! It is one thing to perform many transplants but are they relative?
How many were performed on patients with RAEB? Those performed on patients with other diseases do not have any bearing on a patient with RAEB. How many of these were successful? Successful at 5 years?
Now many were on men 59 yrs old with RAEB? How many successful.
How many of those performed on men over 2oo lbs have been successful?
Lots and lots of questions that create more questions. Be sure you are comfortable with the answers. If not keep probing till you are.
I have a friend who had a SCT there. He went through hell several times over, but he is past 6 years now and is doing very well. They did some rather radical procedures to get him through.
It is a great facility with a wonderful staff. The more info you are able to learn from them the better your understanding of all that may be going on.

[jaxem]

MNLady
do a search using your browser for NMDP which is the National Marrow Donor program. On it, you can search all the national institutions that do transplants. check the “cord Blood only” box and compare the # transplants between facilities. this data may be a little old but note Fairview’s numbers compared to everyone else’s. they are a machine with exceptional support people that has their act together. If my wife is accepted, it’s the place I want my wife to have her transplant & I’m coming from NJ. Also do a search within Fairview’s web pages. You’ll find a list of questions there that you can go through and use and/or edit for your own use.

[MNladyslipper]

Well, we went to Mayo today and met with our regular doctor and then Dr. Steensma. You can check out the good news on our Caring Bridge site
http://www.caringbridge.org/visit/barryl
Dr. Steensma gave us some new and encouraging news about reversing chromosome damage. We go to Univ. of MN next Tuesday.

[poppyshope]

Good for you Bev, I went to your site and what a wonderful tribute to your friends and family. I used to tell my dad all the time that although this was an awful disease – we both had the time to say everything- I guess that was the one gift in all of this the time to focus on letting the person you love know what they mean – instead of having words unsaid. Anyway, if postive reflections can cure you and Barry are on the way because that guest book is beautiful. Keep up the optimism it is always good to be someones cheerleader! In my thoughts and prayers….jen

[MNladyslipper]

We went to Fairview yesterday and they said my husband did not have a match, but they did find two cords of blood that were a preliminary match. They wanted him to have a bmb after just one month on the Revlamid and if it is not working move him to Vidazda. If it had worked and his blasts were down below 5% they wanted to proceed immediately with the transplant which could be as soon as the end of March. I called Dr. Steensma at Mayo this morning and he disagreed with the rush to transplant. He wants to give the Revlamid a chance to work. He said at least two cycles. If it works it would give us time together hopefully symptom free. It is so confusing to get these different opinions! BOth Fairview and Dr. Steensma said we have about a 35% chance of a successful transplant with the cord blood. This is very scary!!

[jaxem]

MN
it is scary! what i’ve read about these drugs is they take a long time to work, usually 4 to 6 rounds and each round is about a month (dacogen is 6 weeks). in the case of my wife, drugs brought her down to 8% but it’s stuck there and as you stated, you need less than 5% blasts for a cord to work. sometimes i think, maybe it’s better to leave well enough alone. as long as the drugs are holding the blasts at bay, what’s wrong with that? the thing is, you never know when the drugs will not work any longer. in my wife’s case, driving the blasts below 5% requires more drugs added with severe side effects. good luck with your decision.

[MNladyslipper]

Jack,
I’m hoping your wife and my husband go in about the same time. We would all have someone who understands and we could commiserate with. Your wife has outlived my husband’s prognosis. We don’t want to give up any time that we could spend together and with the kids by going in too soon, but we don’t want to miss our window of opportunity either. They do have two cords available now that are a preliminary match. Will they be available in 6 mos. or a year? I want to bury my head in the sand!

[Neil]

Hi Bev
This might be time to look at the statistics.
What are the experienes of a 59 yr old with RAEB 2, his level of chromosome damage and monosomy 7 on:
Revlamid 3mo? 6 mo?
Vidaza 3 mo? 6 mo?
compared to a cord blood transplant?
It is easy to get caught up in the hope of a transplant, but at 35%. This needs thought.
You may wish to have more conversations with DR Steensma and the docs at Fairview so you can develop the best set of options possible.
Has anyone offered a prognosis better than the original 9-18 months?

[jaxem]

mn
i wouldn’t worry too much about the availability of cords. they are much easier to match than an adult donor. more are becoming available every day. thanks for asking about my wife. her biopsy should be in about 3 weeks after which we’ll know if we are going to return to Fairview. all the work-up (again) can be done at her Clinic with results & slides, etc. sent to Fairview. I anticipate early April if it’s a go. if not, then we go to Plan D, whatever that will be. the 35% # they gave you is basically that 1/3 will have success, 1/3 will relapse, and 1/3 will die due to infections, etc. It’s a tough decision, and like Neil states above, talk to the docs & social workers about helping you with the decision.

[MNladyslipper]

Neil,
No one has changed the prognosis. THey all said that the chromosome damage makes it difficult to predict. Do I ask the doctors for data on the drugs, or is there another place I can go. All we have been doing for the past month is reading and researching. My husband had his first blood transfusion today, his hemoglobin had dropped to 8 but the other numbers were at least holding. I thought it somewhat ironic that his transfusion came exactly one month after his diagnosis. Social Security called yesterday. They thought it a little different that he had applied for disability so soon after being diagnosed. I told them what I knew and she said hopefully it would just take a phone call to the doctor to get it approved. Just one more “little” thing to add to an already stress filled day!

[Neil]

Would keep pushing the docs for all of the info ypu can gather. The more activity they generate the better, You can also go to the drug manufacturer for more info.
It is good you have the process going with Social Security. Remember when an application is approved, Social Security benefits will be paid for the sixth full month after the date the disability began. In many cases it takes much longer for approval.
Hopefully the tx will keep his red counts at a comfortable level.

[Author]

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