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jga_socal
Memberoops. that link does not work for me.
MemberHi June,
Sorry about your run-in with Shar. Doctors are a curious lot these days. The good thing about Shar is that he reveals his strong bias… so you can move on. My doctor remains quiet about everything but throws in occasional quips that reveal his bias towards stem cell transplant. My counts have been remaining level. So on a recent visit he quipped “you are living a charmed life”… IE: my counts are bound to plummet any minute now. He doesnt like the fact that I’ve decided to wait for a negative trend in my blood counts prior to starting the sct process. Does he really know something or does his sct department desparately need my business?
But it still makes you wonder. Has your Kaiser been experiencing problems with their blood provider or blood administration? Have Shar’s transfusion patients been having a high rate of ‘problems’? This is not info Kaiser will be willing share cuz of …. yep; the accountants and the lawyers.Oncologists/Hematologists make a pittance on our office visits. Even blood transfusions dont pay much because the blood is donated. The big payoffs are with stem cell transplantations and chemotherapy and it’s administration.
It is interesting to read the Hippocratic Oath that many doctors take prior to practicing medicine. In a hospital environment doctors have to answer to higher authorities who did not have to take such oaths.
MemberSome great info can be obtained from the National Comprehensive Care Network . Particularly the pdf: NCCN Clinical Practice Guidelines in Oncology for Myelodysplastic Syndromes .
To much blood transfused in one sitting can produce lethal blood clots. For this reason doctors dont like to give more than 2 units at one time. Younger people can tolerate more, older people less. I’m guessing the Doc wants to wait at least 2 weeks before transfusing another 2 units into your Mom. By the way, the most a person needs, if their own rbc production has totally shut down, is 1 unit a week, safely transfused at 2 units every 2 weeks.
Its a little odd to have an Hgb count drop from 10.0 on Monday to 8.8 two days later. A normal decline during a 2 day period for someone with no rbc production would be around .12 Hgb points per day, so .24. Your Mom’s Hgb decline was 5 times that. Normal Hgb die-off occurs at a constant rate because the Hgb is created at a constant rate. However, since donated blood may have been sitting around for up to 1 month, (up to 25% of the transfused Hgb could already be dead), and the donated blood is mixing with other previously donated blood, the result is an inconsistent rate of rbc die-off. Your Mom may experience periods of sustained Hgb levels and subsequent periods of rapid declines in Hgb levels.MemberHi. I’ve been taking 2000mg exjade daily for my 215lb frame since April. Ferritin started at 2780, went to 2100 3 weeks after exjade start. 5 weeks later ferritin went back to 2750. The latest reading 3 weeks ago was 2400. I get 2 rbc bags every 5-8 weeks. I used to be on a 2-bag, 5 week schedule but for some reason, the last few months my rbc needs have diminished. Next mon. I go in for the blood test. I’ll prolly need 1 or 2 rbc units again. That will have been 7 weeks since the last xfusion. Last CBC showed my WBCs at 11, the top of the normal range. I’m wondering if exjade, or just my mds progression, is causing an increase.
hope this helps.
Jim
I cant figure out exjade, the way my ferritin bounces all over. It really has minimal side effects. my metabolic panel shows no strange enzyme activities. No real nausea or diar, etc… It also has no taste. I know I must be lucky.MemberI think they get peripheral blasts counts from a ‘slide review’ using the CBC sample. Normally a slide review is triggered by something abnormal the automated instruments detect but a doctor can also order a slide review separately. In a slide review they will grid off an area and manually count all cells, abnormal cells, blasts, etc… coming up with blasts%. With a bone marrow biopsy they do a similar manual count but they can also do a machine count. I dont know if both counts are required. My hosp bill came in last week and the bmb charge came to $5k. This seems rather drastic for a 15 minute procedure, so I assume the lab analysis is an expensive component. At any rate, distribution of abnormal cells in bone marrow is not uniform. If blasts from your tail bone come in at 10% that should be considered one sample. Other samples may come in higher or lower. Myself, I only want to pay for the one sample, in pain and dollars. I’m only relaying to you answers I’ve obtained from asking my doctors similar questions.
JimMemberMike, do you have a blog where you can post your progress? Like http://www.caringbridge.org or http://www.carepages.com?
We’d love to stop by and provide support and encouragement as you recover from your bmt. This is your second xplant so you’ve already proven your toughness.
My understanding is that the 100 day mark is a milestone or sorts. The official milestone used by marrow.org people is 1 year. My second opinion doctor says I should go for the sct by end of the year since my blasts count has increased. So, I’m looking for all the success stories I can find! I’m counting on you to pull through!
JimMemberMy understanding is that what is observed in the marrow will be observed in the peripheral blood 2-4 weeks later. If your marrow has suddenly improved, your p. blood will soon follow as the excess p.blood blasts die off.
MemberOMG! What wonderful writing!
“It is difficult to think about the body as an entity that is no longer a comfortable place for the spirit to abide.”
Your perspectives are simply amazing and warm my heart. Your prose is truly poetic. I wish I could write a sentence half as magical as this:
“The world moves onward as it did yesterday and the day before, and Easter comes again bearing hope and good news. Eggs are colored, meals are readied, and Charles and his contemporaries are rehearsing beautiful music all around the globe – from the quiet melodies directed toward Maundy Thursday to reflective and somber sounds of Good Friday through the best sounds of grandeur following the rising sun on Easter Morning.”
I will continue to read your web log.
Thank you! Your journey will now be mine and your continued well-being will be a prevalent subject in my prayers.
JimMemberJune,
Sorry, I have to pass. But I’d sure appreciate an update when you get back. Good for you for going. I image there will be lots of doctor lingo to wade thru. Have lots of fun while you are there.
JimMember3 weeks into Exjade, prescribed at 2grams/day.
Side effects so far:
-First day lightheadedness but now gone.
-Very minor bowel discomfort, mostly gone now.
-Constipation (taking stool softener to counteract)Other notes:
-My Ferritin at start: 2,830 (9x normal max)
-It has no taste
-Full cost is $50 per 500mg pill. ($6k/Mo 4me)
-My private insurance covers 95%
-I’m betting Medicare wont cover Exjade
-Havent had Ferritin test yet to judge effectiveness. Getting one next Monday.MemberBirgit,
I think cords stem cells need only a 6 point match basically cuz of their better ability to adapt to sub-optimal conditions in the new host. The chance that your neighbors baby will be a match for your mama is still pretty small. You doctor will prolly conduct a search with the national marrow donor program ( http://www.marrow.org ). Also you and your neighbor should go to the Request Patient Materials page and order a ton of free materials about the transplantation process, how to be a donor, which hospitals have the best stem cell transplant success, etc.
JimMemberHopefully you are getting leuko-reduced, packed red blood cells. The leuko-reduced process adds expense to the product but it removes much of the donors white (leukocyte) blood cells.
However, your symptoms indicate that you are getting non leuko-reduced rbcs and the donors white blood cells are causing problems in the expected places.
JimMemberJune,
Doing the math…
Your Dad, as a small to medium sized man will carry around 16 pints of blood. The red blood cells in blood last around 110 days, around 16 weeks. With normal marrow he will lose and produce 1 pint per week. A person whose marrow has totally shut down RBC production would therefore need a 2 pint transfusion every 2 weeks. Add the fact that his RBCs are coming from numerous sources that are at various stages of expiration and that prolly accounts for the variation you are seeing. I always jot down the expiration date on the pints I get. By your statement it looks to me like your Dad is running a 100% RBC deficit. NCCN literature says that epo (procrit/aranesp) can take 6-8 weeks to work (1). If no response occurs with Epo alone, the addition of G-CSF/GM-CSF should be considered (2).The 2 references are to the guidelines from the National Comprehensive Care Network . The guide is: ” NCCN Clinical Practice Guidelines in Oncology for Myelodysplastic Syndromes “.
This is kind of a nice document because it represents a consensus of doctors on how to treat MDS. My out-of-town doctor is listed as a panel member on page 2. She appears to be following the guidelines.
You have to read the qualification about whether to try G-CSF or GM-CSF (growth factors) to improve chances of response to Epo. Ask you Dads doctor whether he/she subscribes to the NCCN guidelines or if he/she is a member of NCCN.
(1)Pg MS-10, (2)Pg MS-10
JimMemberJust saw my second opin. doc at City of Hope Hosp in Duarte, Ca. They perform a ‘reduced intensity’ sct instead of a ‘mini’. Doc claims it is much less damaging in the long run than a full sct cuz there is no radiation involved. Yet it has similar outcomes as a full sct that typically includes full body radiation and chemo. The types of scts where they dont attempt to kill all the existing marrow cells are called ‘non-myeloablative’ (greek for ‘non marrow destroying’). The intent is to have the donor cells kill the patients bad cells.
You should definitely research each institution to find out what type of scts they perform. Get the success rates of their protocols from the following free publication at marrow.org. Choosing a Transplant Center: A Patient’s Guide.
MemberPatti,
From my perspective is appears that you’ve been a fantastic dil, caregiver and patient advocate for you mil. My mil pass only 5 months ago a few weeks after a stroke. It’s terrible to see the body give out after such a valiant struggle. I believe your love and efforts have given her a longer time here on earth than she would have had without you. I also believe she will take your love with her and it will be revisited upon you when you need it in the years to come.
Jim -
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