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I got 60K units/week for 18 months thru Oct of last year. I thought that 60K was the maximum dosage. I hope there are no financial arrangements between the doctor and Ortho Biotech (Johnson & Johnson).

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I wonder if the FDA scientists must disclose their investments in the pharmaceutical industry? People often feel more confortable in making personal investments in companies operating in industries related to their own skills and expertise. So it wouldnt be unusual for FDA scientists to make investments in Amgen (Aranesp) and Johnson & Johnson (Procrit). These product are big money makers for Amgen and J&J.

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You will show your doctor the report? It sounds like you are getting cafeteria style medical care.
You get lab reports sent to you and you then relay them on to your doctor? Maybe that’s how it is done in India and it may not be a problem. In my case my doctor did all 4 of my biopsies and sent them to be analyzed by doctors in a medical group contracted by the hospital. The final report is written and signed off by a doctor not a lab technician. The report goes to my doctor, not me. I have only asked to see the reports from 2 of my biopsies. The reason is they are full of stuff like this:

“Markedly hypercellular marrow with complete trilineage maturation”,
“Hyperplastic megakaryopoiesis with rare abnormal forms”,
“Lymphoid aggregate, morphologically benign”

Whats a poor dumb patient to think? My doctor simply translates it, “Lookin good!”
But shoot! Now that I’m looking at my last biopsy report from Feb 16, it states that the previous biopsy, done in December, categorized my MDS as CMML-1, the ‘L’ is for Leukemia. I never got a copy of that report. Sigh. I never knew my RCMD transformed to CMML. But no matter, the crux of my Feb 16 report says that MDS appears to be gone at 30 days post transplant. I’m getting that from the doctors comments and from, “the current marrow shows a return to erythropoiesis and complete trilineage maturation”. My next biopsy is scheduled for April 18. Now I have to cross my fingers for the next 28 days.

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Thats good news! You have a reasonable explanation.

Not to worry about his B-pos blood type too much.
Here is the blood type distribution in the US:
O-Pos 37.4%
A-Pos 35.7%
B-Pos 8.5%
ABPos 3.4%
O-neg 6.6%
A-neg 6.3%
B-geg 1.5%
ABneg 0.6%
reference

Note that in Asian populations B-pos is about as common as A-pos.
At any rate B-Pos people can always receive O+ blood. That means around 45% of the US population can donate to a B-pos recipient.

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Rahul,
I live in the USA. The organization that handles BMT is the National Marrow Donor Program at marrow.org. There is a similar European organization at http://www.ebmt.org.

Browse marrow.org. In the patients area of the site there is a place to order lots of free publications regarding NMDP, BMTs, Transplant Center success rates, etc. It may be that they only mail this info to US residence though. Much of the material is available in various pages on marrow.org. Or, you could have it mailed to someone you know in the US who can mail it to you.
As much as Americans complain about the US health care system, this is a wake up call. For many diseases, the best prognosis frequently involves treatments at US health care facilities. But you have to be able to afford it. I’m not sure any government will be able to afford providing free bone marrow transplantation to it’s citizens. It is very expensive.

My allogeneic bmt started Jan 9, I am around 73 days out. I had the full chemo conditioning preparation. The January bill from the hospital was $291K. The hospital then settled with my health insurance company for $145K. After coming home it looks like the hospital is billing approx $10K/month for my bi-weekly visits, blood tests, bone marrow biopsies, etc. They are settling for around half of that I guess. Then there are the pharmacy costs, also paid for mostly by insurance. My guess is that if you dont have insurance but you can get your hands on $200K, and you can pay up front, then you can work out something with your chosen transplant center to get the charges dropped to match what the insurance companies pay.

I wish you good fortune in your effort to help your Dad. He is very lucky to have you as his health advocate.

Jim

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The other thing to look for on a CBC is labeled MCV. This number indicates the average size of your hemoglobin. If the number is above the normal range of 81-99 then it could mean MDS. Apparently the Hgb cells that actually make it from blast to maturity are misshapen and larger than normal. When I was diagnosed with MDS in Jan06 my MCV was 110. I’ve never heard of evolving MDS.

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M4M,
I’m sorry to hear about Mikes condition and pray for his successful recovery. If he has internal bleeding I think they can quickly determine this from a stool sample.

This is only my understanding of the antibody issue. Ask your doctor and have one of those little digital recorders handy to record his answer. Later you can play it back and try to make sense… 🙂 I have a little Sony voice memo recorder and have used it several times.

When you get donated blood the biggest thing that has to be checked is the blood type of the donor. Everyone knows this. If you get the wrong blood type, hell is to pay. However, the donated blood is different in other ways too. The DNA of the cells is quite different from your own. For reasons that I dont know, your immune system does not, thank God, treat your donated red blood cells as foreign invaders and attack them right away. It maybe that the donated cells partially fool your immune system because there is enough similarity to your own blood cells. If you get blood donated from the same, or similar, donors over and over again, your immune system will get wise and learn to create antibodies specifically to deal with the DNA of that particular donor blood cell. The donor blood cells will be killed by your wised up immune system. This is how viruses succeed. They change their DNA signature over time, escaping detection by your immune system. Crafty bastards them.
When the blood lab detects antibodies to donor blood cells, they have to look harder for suitable donor blood. Now, they not only have to match your blood type but they have to select a donor who’s cell DNA will elude detection by your immune system and not be attacked by the antibodies.
If the patient has developed antibodies to a blood product and the blood bank does not choose blood from donors that are significantly different, then the antibodies will be able to destroy the transfused blood making it look like the donated blood did not ‘take’. There are other causes for hemolysis. When I was hospitalized in the BMT unit in January, a few days after stem cell transplant, I needed daily 1 or 2 units of blood AND platelets. This went on for 10 days. That means my blood was dying off at an unusually rapid rate. I’m sure this was not due to antibody activity. Perhaps the blood that was around during the previous week of chemo was simply dying early cuz of the chemo damage. A hemoglobin cell normally lives for approx 110 days. The body carries about 16 pints of blood. This means about a pint of blood dies every week and a new pint is created in the bone marrow.

Apologies for the likely inaccuracies in this post. But the take-away is that the blood bank must select donor blood that will not interact with any anti-blood antibodies developed by the recipient. It really is a miracle they can do this at all. I’d guess it helps if your hospital uses a high quality and high quantity blood bank.

Jim

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With all 3 counts below normal, even if only by 10-20%, something is amiss. If you have MDS then it was caught early. So how did the biopsy check out? June, I think the proliferative disease would result in higher than normal counts, right? I hope your Dad is doing well on Vidaza. btw is your dad a candidate for a mini transplant? the nurses in the bmt unit where I lived in January talked about some 70+ year olds who had it done successfully.

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Sounds like an allergic reaction. They always made me take the 2 meds eve mentioned. I never had the reaction you described.

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Slipper,
I had 25+ transfusions before having to get the antibody match treatment. I was type A-Pos. Now I am B-Pos but havent needed transfusions for 2 months. It seems odd that his blood shows antibodies after only 1 transfusion. Maybe I was lucky. Funny though, after getting a few transfusions that were screened for whatever antigen that was causing my system to create antibodies, the problem went away. For my last few transfusions late last year I did not need the antibody test and screening.
At any rate, I never heard any doctor or nurse say anything to the effect that there were any long term repercussions from getting blood screened for my particular antibody problem. And believe me, I asked a lot of questions.

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rahul,
To me, there are 3 not normal things you’ve written.
1. Getting a bm biopsy Mar 10 and having the results only 5 days later. I have had 4 BM biopsies and they each took over 2 weeks for the results to come in. Maybe your hosp lab is very quick.
2. Getting 2 bm biopsies 2 months apart. This is a very expensive, labor intensive test. Why did they perform a second one so soon? Insurance company wont be thrilled to pay another $5K 2 months later. I think they require 6 months between tests unless an emergency.
3. Going from 12% blasts to 4% in 2 months without meds. Maybe a miracle? My doctor did tell me that blast distribution is not exactly uniform throughout the marrow. The 2 tests could have been taken from different bones. But an 8% difference??

If your Dad has good health insurance or is rich, research the transplantation option. He is young enough to be a candidate as long has he has no other morbidities. Go to marrow.org to read about the donor search and match process. Hopefully you live in the USA. As much as USA citizens like to complain about the USA health care system, if you have a serious illness like MDS your prognosis is better if you get care in the USA.

thats my oped. Jim

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Gail,
I’m so sorry.
Your post was hard for me to read as I also just had a stem cell xplant Jan 9 with a 10/10 donor. It is day +50 for me, home and doing well so far… We who opt for the stem cell transplants know the risks. It’s like playing Russian roulette but you MUST pull the trigger 3 times. For me, I’ve only pulled the trigger once so far. I have to pull 2 more times in the next 10 months.
Jim

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What I think I know about this subject…

Regarding the stimulation of cancer cell report, the article doesnt identify what types of cancers are stimulated by EPO, except that EPO may “cause tumors to progress”. MDS does not cause tumors so perhaps this study is not applicable to us? In addition, even though MDS is a ‘clonal disease’ like cancer, many/most doctors do not categorize MDS as cancer.
Regarding the other potential problem with EPO, blood clots, this should not apply to us because we tend to be very anemic. The blood clots tend to be a problem for people who have a relatively minor case of anemia. For people who’s hemoglobin is less than 10, I dont think blod clots are an issue with EPO treatments.
As a result of the blood clot warning last year I believe the threshold Hgb required for EPO treatment was lowered to 11 or 10. So, people who are slightly anemic at 12, even though they claim to be miserable because of it, should not get EPO until their Hgb drops below the threshold.
Jim

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CathyW, Im led to believe all the nmdp certified bmt centers share their data. So, in fact, you probably stand just a good a chance at ucla as coh. If one bmt center stumbles across a great protocol they will publish it and other centers will follow suit. Many of the bmt doctors in the state started their bmt training at coh anyway.
good luck. i am rcmd too but never did chemo. the chemo may work for a while but those pesky bad stem cells will continue to slip back in the assembly line and do there non-thing. Its best to go out with the old and in with the new.
please let us know how you are doing.
jim

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Found this in the aamds.org fall 2007 newsletter. Additional warnings regarding Exjade use.

Quote:

Revised Warnings and Adverse Reactions for Exjade® (deferasirox)
In May, the Food and Drug Administration (FDA) announced that the agency and the manufacturer Novartis had notified “healthcare professionals of changes to the warnings and adverse reactions sections of the product labeling for deferasirox (Exjade®), a drug used to treat chronic iron overload due to blood transfusions (transfusional hemosiderosis) in patients 2 years of age and older.” Cases of acute kidney failure had been reported after Exjade® came onto the market; some of the patients unfortunately died. The majority of the deaths, however, occurred in patients who had several other medical problems in addition to the iron overload and whose hematological disorders had progressed significantly. Besides the reports of deaths, there were “reports of cytopenias [low blood counts], including granulocytosis [low red blood cells], neutropenia [low white blood cells] and thrombocytopenia [low platelets] in patients treated with Exjade where some of the patients died…. Further, cases of leukocytoclastic vasculitis [inflammation of blood vessels], urticaria [hives], and hypersensitivity reactions [including anaphylaxis and angioedema] were reported.” Still it is not known how these problems are related to the use of Exjade®. The FDA advises “(h)ealthcare professionals…(to) monitor serum creatinine in patients who are at increased risk of complications, have preexisting renal (kidney) conditions, are elderly, have co-morbid conditions, or are receiving medicinal products that depress renal function. Blood counts should also be monitored regularly and treatment should be interrupted in patients who develop unexplained cytopenia.” Patients can find out more by talking with their treating physician and by reading more HERE .

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