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JoyceDee, jim may experience a quick reduction in his Ferritin level after the first month, but dont expect that to continue. This is not only my experience but the experience of 2 others I’ve met while getting transfusions at my hosp. Neither I nor the other Exjade users have experienced significant side effects. From my reading, this is the way I think it works.
The Ferritin molecule is where the body harmlessly stores excess iron, and is where your marrow gets iron to make hemoglobin. RBC transfusions introduce maybe a quarter gram of iron with every bag. The body tries to create a Ferritin molecule out of the excess iron. Once the maximum binding capacity for Ferritin is reached, no more Ferritin can be produced and any more excess iron starts binding to organ tissues, where long term damage starts to occur.
Exjade extracts iron from Ferritin, then eliminates it from the body. When Ferritin is reduced, more Ferritin is able to be produced using the iron from ‘other’ places in the body. It is a slow process for your organs to give up their stored iron to make Ferritin. If your own RBC production has shut down, like mine recently did, expect Ferritin levels to drop very slowly, maybe 100 points per month.

[jga_socal]

Marlene,
Yes, I get the other blood treatments you mentioned except for the Leukocyte ‘filtered’. I just now did the research and found that a study shows that CMV filtered is just as effective as CMV negative blood. The bags of blood I’ve gotten only said leukocyte ‘reduced’. Now I will ask the doc about the possibility that i got CMV filtered blood without it being labeled as such.
I posted this topic because I dont know how prevalent it is for doctors to not order a CMV blood screen for new transfusion patients. Hopefully my case is rare and most everyone gets test. If treatment mistakes are made you can only hope that the ramifications are minor.

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June,
It’s 9:42am Fri morn and I have to leave now to get my 44th and 45th pint of donated blood. Whoopie! Yes, I think I’ve reached the phase of complete RBC shutdown, needing 2 pints every 2 weeks. At this pace my Hgb is cycling from around 8.2 to 10. It is uncomfortable for me to get below 9. So, I’m going to ask the good doc if I can get 2 pints next week which will change my Hgb cycle to a low of 9 and a hight of 11. At any rate, I’m going in for a sct in the next 4 weeks so maybe it doesnt matter.
I have recently learned more about RBC transfusions (the hard way) and will post on this topic later today or tomorrow. The post will be very important to those who are RBC transfusion dependent AND may be candidates for a future stem cell transplant.
Time for a nap in the big recliner now…..
Jim

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Hi. Ditto with Neil.
Dr. Silverman is the lead of a clinical trial using a cocktail of Vidaza and Vorinostat. Ira, a subject in that study, posted his ‘complete response’ results on this board. When you speak to Dr. Silverman maybe you can try to get more results from that trial! Is it working for the other mds patients? There should be around 35 other people in the trial.

Waiting for disease progression is an option not without risk. MDS can progress very suddenly to Leukemia. I have waited around 20 months from diagnosis. But now my own RBC production has completely shut down and I’m getting 2 pints of the red stuff every 2 weeks. I am currently waiting for a transplant date, dependent upon the donors schedule. But the ‘wait for progression’ is over for me, and I need to move forward. This Vorinostat study has me wondering a little. But I think the safest thing to do at this point is to continue on to get the transplant.

You asked about blasts. I will give you my version. Blasts are baby stem cells that havent decided what to be in life yet; a RBC, a WBC, a Platelet, or another stem cell. I think normal people have < 1% blasts in their marrow. The normal little tykes quickly commit to a career as one of the 4 major types of myloid cells and thus become useful members of marrow society. For people with MDS, the baby stem cells start sticking around, never growing up. Sounds like some teenagers I know… It turns out there is a very complex messaging system in the hematopoietic system that ‘tells’ the blasts what to become. Apparently the little sick blasts stop listening to the messages. It’s almost as if the blasts have little iPods and are listening to their rap music full blast, drowning out important instructions. They become un-useful members of the marrow society. These ‘bad’ blasts, when some of them do finally commit to adulthood as a stem cell, carry their bad iPod habits with them; they give birth to more blasts that do not listen and commit. The blasts counts, given as a percentage of blasts vs. other cells, will rise, and your RBC, WBC, and/or Platelet counts will sink accordingly. Sometimes blasts will be happy to commit as a WBC or a Platelet but will not commit to be a RBC. When a blast only wants to be a WBC and your stem cells go hyperactive producing WBCs, then you have a leukemia. Blasts can be found in your marrow and your peripheral blood. If your marrow blast percentage is less than 5%, it generally means you are in the early stages of MDS. If 5% – 20%, you are in an intermediate stage. If over 20% you are in the later stages or you are leukemic. I’ve never seen a study indicating how fast the progression of mis-wired stem cells take place. The key problem is that the mis-wired stem cells have a ‘proliferative advantage’, they push out the normal stem cells. This is one of the least understood attributes of cancer cells, the ability to survive and populate with more success than normal cells. By the way, I see you are a newbie with MDS. I am very sorry for your diagnosis. Not so long ago such a diagnosis was tantamount to a death sentence. But today there is much cause for hope, especially for someone of your young age. Please keep us posted.
Jim

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FYI. This drug is spelled a little differently, Vorinostat, at ClinicalTrials.gov .

There are several trials going on with Vorinostat for MDS patients. They are all recruiting patients.
Ira is most likely in this study: ” Vorinostat and Azacitidine in Treating P…yeloid Leukemia “. ClinicalTrials.gov Identifier: NCT00392353. Study ID Numbers: CDR0000511887; NYCC-6898; NCI-6898

Continued success Ira!
Jim

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jack,
im curious why you chose ucb for transplant. i am getting a mud transplant soon and would be concerned about the negative issues with a ucb. for one thing i am 215 lbs so i’d need multiple cords. the longer grafting period concerns me. what about the match level? did you not find good mud matches? personally i’d be more willing to look into ucb if a good mud match was unavailable. since your wife is getting a mini xplant i guess the dangers posed by the no-graft scenario are minimal. is the gvhd issue the main reason you went ucb or was there a mud match problem?
thanx.
I just checked with the nmdp regarding gvhd attributed mortality. Post-transplant mortality by gvhd is 14% for either HLA-sibling or MUD. MUD data is not broken out by stem cell origin, but the UCB GVHD occurrence must be somewhat lower than 14%. I was surprised to see that a sibling match provided no better odds against gvhd than a mud match. I wish they broke down the numbers by match level, 8/10, 9/10, 10/10, etc… When looking at these charts is may get depressing to see a 30-40% 5 year survival rate for adult mds transplants from 1996-2001. But if you look at the 1 year survival trends you can find encouragement from the fact that there has been a 30% reduction in 1 year MUD mortality from 1999 to 2003. I would extrapolate that the future looks much more rosy for people transplanted today than for people transplanted 5-10 years ago. Positive progress is being made so fast you really cant read too much from data even a few years old.
I’m guess I’m just trying to get us psyched up for the upcoming wild ride

Jim

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No prob. My notes indicate that MVC is the avg volume of your hemoglobin. Normal range 80-97 ml3. Screwed up hgb cells tend to be larger. My MVC has varied between 100 and 116.
See Lab Tests Online – CBC to get the full poop on understanding your CBC results.

Re stem cell transplantation, see the National Marrow Donor Program , a US organization. In the UK see British Bone Marrow Registry (BBMR)
On the marrow.org site you can order a lot of free publications concerning Stem Cell Transplantation. But you might need to have a USA address. I am quite curious about transplantation centers and their success rates in the UK. But I’m not sure the BBMR publishes their outcomes like the NMDP does.
Jim

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Wow. J.Claire, you sure resurrected this thread from the past! Its a good one though and should prolly be a sticky, always on the top of the topics.
My signature says it all for me cept I just quit work on Friday to prepare for a stem cell xplant in a few weeks. There are two 10/10 matched donors at this time and I dont want to miss the opportunity for a cure since my blood counts just took a turn for the worse.
Now I wish I could get updates from some of the previous posters like JimmyD! Hey Jimmy! what up! U still there?

[jga_socal]

gj, If you search Google news you will get [ this page ] full of articles about this topic.

[jga_socal]

Hi jules. Sorry for your recent mds diagnosis.
I’m a big supporter of standardizing treatments for rare diseases like mds. I became aware of an organization that promotes that at National Comprehensive Care Network . My second opin. doctor is on the board. They publish a standardized treatment protocol for mds at NCCN Clinical Practice Guidelines in Oncology for Myelodysplastic Syndromes . Although this doc is meant for physicians, it is still an interesting read. The bottom line is that I think you want a doctor who follows a treatment protocol that is well supported by the hemo/onc community. The first thing your doc needs to do is determine the severity of your mds. Your bone marrow biopsy report has the data to derive your level. The severity level should fall into low, intermediate 1, intermediate 2, or high. Using this info, your mds subtype and age, the doctor can follow a workflow as specified in the standard treatment. If your doctor has scheduled only 6 month visits my guess is that you have ‘low’ severity.
Looking at the future, at 46 years old, you are young enough for the only cure currently recognized by western medicine: a stem cell transplant. However, the toss-of-a-coin outcome of that lengthy procedure will have you wondering if you would not be better off sticking with supportive care until the disease progresses. However, the disease can quickly transform to leukemia between 10-30% of the time, depending upon your severity level. So waiting is also a risk. The rock… or the hard spot… you choose. No doctor can tell you ‘how fast’ mds will progress if you are in the low to intermediate 1 categories. I, for one, attribute my steady blood counts over the past year to taking food supplements (see my signature line). I imagine that our marrow stem cells are like an assembly line for making red, white, platelet and more stem cells. When the assembly line finds itself short of raw materials in the form of minerals, enzymes, etc… production has to slow down. With mds, the stem cell ‘babies’ (blasts) never evolve into adult red, white, platelet or stem cells; as though some key materials are missing to complete the growth process. Although supplements will not reverse or cure mds, in my case, I am sure that they slowed down the progress. Eventually the faulty line of marrow stem cells will take over.
Hope this helps.

[jga_socal]

Thanx, I read the article. I think the danger is related to the danger of getting too much transfused blood at once; for instance, after an auto accident. Us regular xfusers who get 1 to 2 units at a sitting should not have this prob. What think?

[jga_socal]

Somehow I cant stop feeling sorry for the 2 moose.

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You should look into getting referred to a oncologist/hematologist doctor. The CBC count changes you are reporting over only 2 week period raise questions. Your Hbg went from 8.0 to 10.8 immediately after your 9/20 transfusion. Since a unit of blood will raise your Hgb around .85 this seems to indicate you were transfused with 3 units. From everything I learned in my 35 units, no more than 2 units is safe unless the good Dr. thinks your Hgb is so low as to be an immediate danger. Getting too many units at one sitting can result in lethal blood clots. (Catch 22). Your WBCs rose after the transfusion which makes me wonder whether your transfused blood was leuko reduced. It should be. Your WBC’s more than doubled the week after. This could also be due to your body fighting an infection. Your Hgb loss over the 8 day period indicates to me that your marrow is still producing around 50% of your requirements. You platelets are def. in the danger zone. You should be seeing little red welts appearing on your skin at your levels. Your peripheral blood blast counts look wrong, increasing like that. You appear to have the Pancytopenia form of MDS, all 3 cell lines are messed up, like me. If I had the number you are reporting, I’d be all over my doctor for answers. How do you feel? Why dont you go over to the ‘Professional Member Forum’ and ask them. Oops! No one posting there.

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Hi Shellbivens,
Also search this forum for ‘exjade’. I’ve contributed a few posts on my experiences.

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Yes, I’ve had monthly comp metabolic panels. They show BUN, CREATININE, SGPT, SGOT and other levels. The liver function enzymes SGPT and SGOT are 69 and 21 respectively. The 69 is a little over normal. The kidney enzyme levels are still in normal range.

The tummy discomfort went away around the same time my doctor examined me and he found no problems. So I’ve been back on Exjade for 2 weeks now.

When I stopped Exjade I also stopped taking fish oil, CoQ10, B6. Since that time I’ve had 2 CBCs that are showing a definite decline in RBC production. I’ve had a xfusion of 2 units 3 weeks apart twice now. I promised myself if this happened I’d go for the sct. I have given my doctor the go-ahead. I’m told they have found 2 10/10 donors for me. Very lucky. A year ago there was only 1. So maybe now I have a backup donor in case the first graft does not take.
I still have to pass some tests before the sct is approved, but I think I qualify. My last marrow biopsy showed 6% blasts. I think my organs are still strong. Hanging in there…
Jim

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