New to the list

[Collene]

Hello all. My name is Collene. My husband Wallace(37 yrs old) was recently diagnosed with MDS. We don’t know what classification as we still don’t have all the results from the bone marrow biopsy. We are from a small community in Newfoundland, Canada. Don’t know for any other people with this disease. I’ve recently joined another list as well so we could meet others with this disease.

My husband is feeling pretty good overall. He does find that he gets tired easily but his hemotologist doesn’t think that his blood counts are too bad. Last counts were WBC: 2.3 HG: 89 Platelets: 48. They seem pretty low and scary to me…

We found out on Thursday past that his sister is a match for BM. I don’t know how good of a match yet. We have to meet with his doctor to start planning for the BMT. This means we will have to travel to Halifax NS soon to meet with the BMT team. If there is anyone that has any experience with the Halifax facility, I would be VERY greatful for a response on what it is like. We are trying not to worry too much but thinking about a BMT is just so scary. Expecially when we have to be so far from home to have it done.

[Bill and Mary]

Collene,

You can get a lot of information on BMTs at http://listserve.acor.org/archives/BMT-talk.html. I also bought a book “Bone Marrow and Blood Stem Cell Transplants – A guide for patients” from the BMT infonet. It is a very good primer on the BMT process.

I found that the center for excellence at the Hutchison was very supportive and informative. I imagine, but don’t know, that other centers are similarly good.

From my experience, what the hemotologist thinks isn’t bad and how your husband feels may well be entirely out of sinc. He is going to have to tell the Dr. when he fells bad and thinks he needs an RBC transfusion. When my other counts are at his levels, the nurses tell me to stay away from sick folks and not to handle sharp objects.

You are right to be scared and concerned, it is a big big step, one that I too am facing. Everyone I have talked to says it is rough but worth it. You have to believe that he will get through it and that life will be back to normal in a couple of years. I wish you and Wallace the best of luck!

If you are interested I can send you a 2 page summary of my visit to the Hutch. Based on that visit I changed my mind about having a transplant and decided to go for it.

[KATHY1]

Collene, Sorry to hear about your husband (especially so young). You will find much information from the people on this forum. Feel free to vent if you need to also. I’m hoping for the best for you and your husband.

Kathy

[Terri]

Collene, there is so much info on this forum it has been such a help for me. The support is overwhelming. I wish your husband well.

[Neil]

Hi Collene,
A BMT or SCT is an option considering your husbands age. There are some imporotant considerations that should be covered with his hemo and the transplant team.
If his sister is a perfect match he would have one hurdle out of the way.
The experience of the transplant team is critical!!. You want one that has had as much experience as possible!! This is not a time to be dealing with rookies!
You want to know how many SCTs/BMTs they have done? How many on patients his age.
How many were successful beyond 5 years.
How many were done on patients with his classification of MDS? How many of these were successful beyond 5 years? At his age.
Clarify how long it will take for recovery. It is not unusual to take almost 2 years.
The fatigue he feels is most likely due to his hemoglobin (HGB) level. Docs usually begin to transfuse (TX) at 8.0. All MDS patients have a different threshold for fatigue. Some feel rotten in the low 10s, others get down to the 6s. Much depends upon the the individual and their health/physical condition beyond MDS.
If he has to have a TX, make absolutely certain he gets irradiated/filtered blood! This is crucial if a BMT or SCT is planned. It will reduce many downstream problems. Would refuse any blood that is not irradiated and filtered!! Also do not use any blood donated by family members. It could cause problems with a BMT/SCT.
By all means, get the book that Bill recommended. There is a ton of info in the net on BMTs and SCTs. Take advantage of it.
One of the difficulties of either procedure is graft versus host disease. A mild case of GVHD is desireable. It is a positive indication the graft is taking. There are drugs that will control it, but it can be very uncomfortable.
Keep in mind all MDS patients are different. We respond differently to the disease and to treatments. What works for one may not be suitable for another.
In the meantime do everything possible to lead an otherwise healthful life style. I take a multi vitamin, Vitamin C and B Complex. Eat a low fat low carb diet. Get all the rest I need and all the exercise I can tolerate. Be sure to discuss these measures with his doc. It works for me, but his doc should agree.
I have some materials that I will send via E-mail if you included your address. Much too long for The Forum. Be sure you read over the educational materials available on the home page for this site.

[Davea]

Collene, Hi, sorry to hear about your husband’s diagnosis. I am from Nova Scotia and will likely be getting a transplant in Halifax some time in late March or early April. My blood counts have been low for almost 2 years now. When my Hgb. gets to the low 70’s I receive 2 units of blood, usually every 4 weeks. When diagnosed, my plts. were at 30 and have dropped as low as 6. Plt. counts have remained between 14 and 20 for the past several months since being put on Cyclosporine. The BMT Dr’s name in Halifax is Dr.Couban. I’ve heard some good things about him. You’re husband is fortunate to have a sibling bone marrow match. Dave A

[alexandra7]

I am sorry you had to find your way to the list with such a sad reason. Well I can’t help you too much because I don’t have any info on this but I can tell you there are a lot of people here who know so many things and people who have had BMT . I sure they will help you . God be with you!!Alexa

[Karenj]

Bill,

Could you please send me your 2 page summary of your visit to Hutch. I would really appreciate it. My email is k_johnson255@hotmail.com. Thank you.. Karen

[Karenj]

Neil,

Do you know how a person can have high PRA’s? Does the PRA increase due to platelet transfusions? Could you please send me information that you have to my email address – k_johnson255@hotmail.com. I would really appreciate it. Thank you. Karen

[Collene]

Dave A, once you had your donor for BMT, how long was it before the decision was made of when to have it. We have to see Wallaces Dr again on Feb 9th and I’m hoping we will be travelling to Halifax to meet with the BMT team by the end of Feb. Just wondering, once you have the donor, how long do you have to wait to have the BMT? Collene

[sarah]

Collene, welcome to forum. When will you get the results of BMB? Wishing the best for your husband.
Sarah

[Marsha]

Colleen,

I had my BMT in Nov/04, still recovering. Anyway, found my donor in August. She needed to get a complete physical. Once she was cleared for being healthy she was given 3 seperate dates to extract the bone marrow. She got to pick which one. They brought me into the hospital one week before transplant to do the chemo to kill my immune system. I wish you all the best, and I pray you get the answers you need.

[Davea]

Colleen,

As you can see it varies from person to person. My understanding is the sooner the transplant is done the better chance you’ll have. In my case none of my siblings matched so it took almost 1 1/2 years to find a suitable donor. I found out on Jan. 12th and was given 4 weeks to make up my mind. My choices were to have the transplant soon or stay the course which would make me ineligable for a transplant within a year or so.This being said, everyone is different and the Dr’s may want to monitor your husband’s condition for a few months before a decision is made on a transplant.

[Neil]

Hi Collene,
Neglected to mentio some other significant points in yesterdays message.
Would not put too much faith in the prognosis info you will be reading in most MDS info. Most of it has been derived from 3 areas. Marrow blast percentage, Chromosome abnormalities and the number of lines involved (how low the counts are and if trending lower). You will note there is no mention of age. Most MDS patients are in their 50s to 70s. Many of them had MDS for a period before diagnosis. The survival rate for one in the 30s is much better.
It is very rare for a patient to succumb to MDS. About 30% transform to leukemia. These are usually in the RAEB1 and RAEB2 classifications. It is the complications MDS can create with other parts of the body that create difficulties. Heart problems, liver, pneumonia etc are the areas us older folks have to be aware of. Wallace has a big advantage in his age. Thus my comment in the earlier message about living a healthy lifestyle outside of the MDS.
Be sure to ask his docs about his risk level and how his age impacts the risk level.

[Joannie]

Hi Collene,

First of all I would like to say I am so sorry about your husband, it has to be a bit terrifying for you!

I am from Halifax, Hammonds Plains is where I presently live. Age and finding an exact match are two great things you have going for you!

I have friends in NFLD, actually a Colleen who is a veterenarian. I have several other friends who live there too! My sister in law who lives here now is from NFLD and a lady I babysit for is from NFLD! Lots of great people. What part of NFLD are you from?

As Dave says Dr.Coubin is said to be very good. He is responsible for my neighbor beingleukemia free!

If there is anything I can help you out with please let me know, God bless and take care. Joan

[Author]

Posts