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Bianca,
“doctors should have a heart and not always go on stats alone”.
Please dont ask a doctor to gamble his ‘feelings’ on your babies life. That is your job. Doctors will and must use physical evidence to make a diagnosis and establish a treatment.
Doctors also have to tell you about ALL the possible long term effects of a SCT. You should ask for the published odds of each one actually occurring. You might find that the odds for some of the side effect are rather low.
I’ve researched MDS quite a bit over the last 2.5 years and it is clear that there is no cure outside of stem cell transplant. Having said this, spontaneous remission is a remote possibility, mostly for the very young.
Spontaneous remission from RAEB in a child
Google “spontaneous remission MDS”
Again, one must consider the odds of having the rare spontaneous remission occur. We have a neighbor whos 11 year old son had MDS pretty bad but it ‘went away’ during puberty. This is a gut wrenching decision you have to make. But, doctors will always go with the greatest survival odds, in part to avoid lawsuits.

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Sista,
Also at marrow.org you can fill out a form to have all kinds of free material mailed to you! Yay!

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Since the fevers/chills occured so soon after the RBC transfusion I have to wonder about the connection. If the xfusion caused the chills there are a couple poss explanations that I can think up.
1. The blood was not leuko-reduced. Leuko-reduction is where they filter out much of the donor’s white blood cells. Also, the blood should be irradiated, which is meant to reduce the population of ‘other’ impurities.
2. You dad has antibodies to the donated blood because he had blood transfusions sometime in his life. Transfusions 20 years previous for any reason could have resulted in remaining antibodies to certain HLA markers on donated blood products. This can be avoided with addition screening of the blood products.

Supportive case might be preferable. I sometimes wonder if these new drugs that only seem to be effective for 6-18 mos, actually serve to hasten the degradation of the marrow. I’d like to know if there is anyone who has had MDS for many years has also had chemo?
Jim

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My favorite website for finding stories from others going thru chemo, stem cell transplants, etc.. is thejournalofaprizefighter.com . On the left side is a section ‘Fellow Prize Fighters’.
I had a mud sct Jan 9 and, so far, knock on wood, fingers crossed, doing really well so far. If you are in otherwise good physical and mental health it’s worth a shot if you are under 60 years old.
Back to the website mentioned above, Duane is 1 year out of mud xplant and is still experiencing some annoying GVHD. It’s a tough and unpredictable road, but it *is* the only road out of bone-marrow-failure town.

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Friends of ours has a son who had MDS really bad from age 9 to 12. Just when they were getting ready to look a stem cell xplant, the MDS diminished and disappeared. Now the son is in his 20’s and doing fine. The suspicion is that puberty somehow ‘fixed’ the problem that caused the MDS.
Maybe big pharma needs to develop a puberty drug for us old ppl? Let’s see, swap MDS for a case of acne? I think so!

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Wendy, I was rbc transfusion dependent from Jan 2006 until around Jan 15 2008. I havent needed a transfusion since Jan 15. Getting transfusions was an event that increased in frequency over the timeframe, presumably as my mds progressed. My rbc needs were around 2 units every 5 weeks to start. By last Dec. I was getting the max, around 2 unit every 2 weeks. During a 10 day period in January I was getting 1 to 2 units per day as my old blood type died off due to chemo.
Generally, a person loses 1 unit (1 pint) per week and the marrow creates 1 unit per week. So if you need 2 units per 2 weeks that means your marrow is no longer producing viable rbc blasts.
Procrit may have worked for me, weekly shots. But I wonder if it also increased the speed of the rbc shutdown process. There was no magical rise in my hemoglobin count during the 1.5 years of my procrit treatments.
This info is not of the sort that raises ones spirits. [ HERE ] may be a better way to look at the transfusion experience.
Hang in there with your Dad. Take care.

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No probs with exjade for me when i was suckin it down last year. my ferritin will be checked for the first time in 7 months on july 3 but the level was around 3000 prior to transplant during which time i prolly rcvd around 16 rbc units in 10 days. Now that i have a regenerative supply of rbcs via my new marrow, i’m starting phebotomies (sp?) next month to bring down Fe. IE: they’s just drain a pint of my blood every month or so. I suspect my Fe is now around 5000. Long term effects of hemosiderosis is organ damage but i’ve never heard the definition of ‘long term’ so i want to start bringing the Fe down asap.
I’ve posted about exjade before. You might search the forum for mine and other exjade posts. Seems like it can make your Fe come down quickly at first. But the decline slows quickly too, I suspect because the Ferrin is reformed in your system by other stores of Fe within your body. It’s only when the other stores are depleted that Ferritin can really start to come down for good. Since you’re transfusion dependent exjade may, at best, only offer a slight reduction on your Ferritin in the long term; that is if you can tolerate the stuff.

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Here is another clue from the CBC. On the CBC is an item called “mean corpuscular volume” (MCV), normal range is 81 – 99. Basically this is the average size of the red blood cells. ( See Here ). If MDS is at work, the number will most likely be larger than 99. Mine got up to 110.
According to labreportsonline.org the number is:
“Increased with B12 and Folate deficiency; decreased with iron deficiency and thalassemia”
Jim

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Shaena,
I was on a strong antibiotic called Sulfamethoxazole for 3 months until April 8. This drug is also called Bactrim, Septrin, or Septra. I am recovering from a stem cell transplant on Jan 9. Around Apr 1 my platelets started a steep dive. See my blood counts on my Blog . Doctors suspected the Septra so they took me off and I switched to Pentamidine , an inhaled antibiotic. My platelets soon recovered and now are at the low end of normal. My conclusion is that Septra was definitely the cause of my platelet drop. Also, finishing a study drug a few weeks later called Maribavir, my counts seemed to improve even more.
Regarding the hgb of 6.7. My low was 6.1 in Jan 2006. I’ll tell you this. No matter what anyone says, your dad will feel a lot better if his hgb is brought up, either by RBC tranfusions or Procrit/Aranesp.

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Rahul,
Good for you and your Dad to have started a dialog with the Fred Hutchinson center.

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Regarding the cause of MDS. Someday I hope some organization will develop a method for thoroughly interviewing people with no-known-cause diseases. I feel that if the lives of these people were thoroughly analyzed and recorded in a database, some kind of similarities in environmental factors could be seen that might help solve the mystery.
For instance, what if reports revealed that 44% of people that contracted MDS used a certain shampoo? Or 64% of the people had diets deficient in potassium? Or 49% experienced some kind of emotional upheaval (divorce, death in family, etc.)?
It may be a shot in the dark. But without a full analysis of the environmental factors in peoples lives around the time they contracted some obscure disease, who knows if there is a predictable causality? :-))
There are so many chemicals in our lives these days, I often wonder…

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Yes, I love your blog Bev. Thanx for the inspirational thoughts. I was on a neutropenic Neutropenic Diet until a couple weeks ago. It was awful. I loaded up on fresh salad as soon as I was cleared to do it.
Jim

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Rahul, Thank God for having money if you dont have insurance. Having one or the other is much easier than the third way, applying for grants.
The list of transplant centers is HERE . Study the list of US transplant centers and read about their programs. I was first tempted to trust only the best statistics for 1 year survival. This ranges from zero to 56%. The City of Hope in Duarte California has one of the 3 most successful programs as judged by 1 year survival. The other 2 top centers in published success rates are in Seattle and Texas. These transplant centers do a lot of transplants. They are very good. They have teams of doctors that specialize in transplants for different groups of marrow disorders.
I just had my transplant done at Scripps Green hospital in La Jolla, California. It has limited published figures for allogeneic transplants in the NMDP book. They’ve been doing autogeneic transplants for over 20 years and started doing allogeneic transplant only the last 5 years. But after studying the situation and asking lot of questions, I came to a realization. The transplant centers all share information. They are not competing businesses. They all want to succeed together. If one center is having success with a particular transplant protocol, the results are published and other centers will follow. The other thing is that many of BMT doctors train at one of the ‘rated’ transplant mills, then take their skills to smaller BMT centerers. My doctor trained at City of Hope.
So, choose some transplant centers certified by the NMDP. In the transplant center publication or online, look for the financial resource representative. Contact them to talk about your case and situation. For instance the lady I spoke to at Scripps referred to in my last post is Paula Peters. See this page: Scripps Green Hospital .
Talk to several transplant centers. Find out if they’ll work with you, where their doctors trained, what type of transplants they can perform, what is the patient/nurse ratio. If you have any relatives in the US, choose a center closest to them.
Hope this helps.

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Rahul, Not sure what kind of search your hcp is doing. If you want the transplant in the US I suspect you should get the HLA typing test processed by US labs and the donor search should use the NMDP. It could be that you have to begin with a relationship with a US transplant center. They will take care of the HLA draw and matching with the NMDP. The NMDP database has over 6 million donors.

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This is a follow up to my March 21 post.

On the way out of the hosp Tues after getting my 100 day post-transplant bone marrow biopsy (ouch), I stopped and spoke with the lady that coordinates my hosp charges and insurance coverage.
She told me things that should be of interest to people who need a stem cell transplant but have no insurance coverage. I’m talking about Scripps Green hosp in La Jolla, CA. But I suspect other transplant centers may have similar policies.
1. The hospital does work with people who are not covered by insurance. Specifically they will charge insurance rates if the patient can pay up front.
2. Scripps has a fund for cancer patients who specifically do not have resources to pay for treatment. There are private angel donors who maintain this fund. Of course, patients have to supply proof that they can not afford the treatment themselves.

I recommend that anyone in the world who lacks the financial resources for a stem cell transplant should not simply assume they are out of luck. start contacting your desired transplant centers (as listed at marrow.org) and find out what programs they have. Apply for assistance directly with each transplant center.
For those who dont qualify but can raise $150+K via a home equity loan, family, or whatever, contact the transplant centers to see if they will work with you on the rates.

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