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Neil
MemberHi Drew,
RARS is one of the better classes of MDS for one to have. Think 55 months is an old prognosis. One that is a bit out of date.
Docs will focus on keeping her TX independent. Some drugs can help. Procrit, Aranesp, possibly Vidaza, Decitabine.
If TX is necessary, she can survive for a very long time. Recent stats have not been developed for a long enough time to know how long. Would venture a guess at at least 15 years if TX keeps count stable. A discussion with an experienced hematologist can clarify her risk status.
If TX is used, make absolutely certain she gets irradiated/filtered blood. This is a must. It will prevent downstream problems and make sure she does not have difficulty getting matched blood way into the future.
Better to approach these issues now rather than have them surface later on.MemberHi Leigh,
Believe Vidaza is available in Canada, but under another name. It was 5-Azacytidine before the FDA approved it for use in the US. Another drug that is very close to it is Decitabine. They will probably recognize both.MemberThanks, everyone, for all the kind thoughts. They are appreciated
MemberHi Lisa,
Do not believe she has MDS. Could be Lymphoma, Multiple Myloma, ITP or just plain old age. Don’t want to put her thru a BMB or any otherdiscomfort at this point.
NeilMemberHi Drew,
If Vidaza does not work, the next step is not clear. There are too many factors to consider.
MDS patients are all differnt. We respond differently to the disease and to treatments.
Vidaza is a great drug—when it works. Stats to date indicate it helps 18% of those who were on the clinical trials.
There are various options beyond. Depends upon her classification, if she is transfusion dependent, if she has blasts in the marrow and or peripheral blood and many many more considerations.
Has she ever had chemo for the treatment of cancer?
As Eve said, an experienced hematologist is an absolute must. She must be treated by a doc that has seen this disease before, particularly the same classification. This is not the time for “on the job training! Many patients have more than one doc on their team. A hemo to handle the MDS and a GP or internist to monitor the rest of the body. In the vast majority of cases the complications created by MDS are more serious than the MDS itself. Many other organs might become involved. Following a very healthy lifestyle —outside of the MDS is important. Diet, rest, exercise and perhaps vitamins may be advisable—if her docs concur. Nothing should be taken without discussing it with her doc. I follow a low fat low carb diet, get in all the exercise I can comfortably handle and get plenty of rest. Take a multi vitamin, B-Complex with Folic Acid & Iron and vitamic C. If I feel a cold coming on I take about 4000mg of C before it sets in. This is all done with my docs approval.
In some cases the disease can be managed. In others transfusions (TX) can support a patient for many years. Know one who has had over 400 TX over 15 years.
Will send you some info if you included your e-mail address in your profile. Too long for The Forum. Be sure you examine the educational materials available on the home page for this site. They are very good.
I am currently responding to Procrit. Am one of the fortunate one who has had good results with it.
NeilMemberI am on Medicare and have Blue Cross Blue Sheild (with RX coverage).
Once the deductibles are met all of my costs are covered.
I think that once Medicare covers their portion of my Procrit expense BCBS covers the balance. Dont think the RX coverage is involved .
Same is true of my periodic Hemo sessions.
Out of pocket thus far has been the deductibles.MemberHi Barb,
Seems every one has a different threshold for feeling the effects of low HGB.
The docs usually order a TX at 8.0
I feel rotten when I get to the low 10s.
My mom was unconscious at 5.7.
Once i went on Procrit my HGB bounced up to 11.5-11.9 after 2 weeks. Was in the 12s after 7 days.
This might be a good time to discuss his options with a doc.MemberI know what you are feeling April.
We all are with youMemberThink you have some good thoughts in the previous messages. They were actual experiences.
Thus far stats indicate 18% of patients will respond to Vidaza.
What does his doc think?MemberAm not at all familiar with the NOL reference
MemberHi Sarah,
Oops, I read it a thrombocytopenia. Sorry.
I have been charting my WBC RBC HGB and platelets
in an Excel spreadsheet. Then put them put them on a graph. Makes it easy to observe long term trends.
Have your BMB results changed from the original? The every 3-4 months is quite frequent. If there are no changes you might wish to ask the doc to exrend the interval. Can get rid of some discomfort. Might be worth discussing with your docs.
Once they saw my marrow was not changing very much they lengthened the interval. If my CBCs indicate something might be going on, my doc sets one up. Just a thought.
NeilMemberHi Doreen,
I had some comments on platelets in a message to SarahJ on Jan 8. If you go to her message under patient forum you see them.
Cord blood is an excellent source of stem cells. Very rich!
If you elect to pursue the program at the Univ of Minnesota, would strongly recommend you ask to have Dr Linda Burns on your team. She has been outstanding in treating a friend of mine and is part of the transplant program.
An 8/10 match is not that great. Be sure you know the success rates on 52 yr old women with your type of MDS if you elect to go for it.MemberHi Jody thanks for asking.
She’s not good. After a TX on 1/5 HGB was 11.9.Plts were 79,000. As of this mornig HGB has slipped to 8.7, Plts 11,000. Appears to be something like lymphoma or multiple myloma. Will not put her thru a BMB.
Plan to set up hospice tomorrow.
She is 93 and had 91 very good years. Her quality of life has slipped over the past 2 yearsMemberHi Sarah,
Did the docs classify your MDS?
There are a number of basics that every MDS patient should follow.
Make certain you are seeing a hematologist that is experienced in treating MDS, particularly your MDS classification and in treating thrombocytopenia! This is a must. There are too many variations of the disease and an experienced doc is necessary.
All MDS patients are different! We react differently to the disease and to treatments. What works for one may ar may not work for another.
At your age, I would seriously consider a Stem Cell Transplant. There is a lot to consider with respect to a match and to what your long term prognosis actually is. This is a tough decision, but with a bit of time a logical decision can be reached.
Thrombocytopenia can be elusive to treat. Some of us can have a low plt count (10,000) and not have any symptoms while others can have much higher counts and have bruising and bleeding. It also takes a bit of time to see where the platelet level will settle in. They can jump around a bit. The equipment used to measure them is accurate within 15,000 on counts between 50,000 and 500,000. It leaves something to be desired when counts are below 20,000. It usually takes a number of CBCs over time to see where they settle in and a reasonably consistant level is obtained. Unfortunately they tend to drift downward as time passes. There may be times when a very low count pops up that is not consistant with history. It can create a bit of panic with the patient and the lab personnel. They usually want to get transfusions under way. This is a time for calm. When this occurs my doc has a slide made and he does a manual count. They always turned out to be at my “normal level” which is 9,000-10,000.
If transfusions (TX) do become necessary make certain they use irradiated/filtered blood for both packed red cells and platelets. It will prevent some downstream problems with a match and will prolong the time platelet TX will be effective. Platelets live around 5 days, maybe a little longer with some people. Unfortunately one cannot have an unlimited number of platelet TX. Eventually the body becomes refractory to them and they do not work. Using I/F platelets will prolong the time TX will be effective.
At the moment there are no drugs that will build platelets long term. Prednisone helps for a short term and has some nasty side effects. Decitibine has helped a few patients as well as Vidaza.
I started on Procrit to boost my red cells and found it was also helping my WBC and Platelets slifgtly. Am getting a shot every 14 days. At the 7 day point my platelets, RBC and WBC are higher than at the 14 day point when I get my nex shot. This is rare. It does not react this way with very many patients.
If you included your e-mail address in your profile I’ll send some additional info that is much too long fot The Forum.MemberHi Carrie,
That is great. It can be difficult.
When ever I learn some one is a blood donor I thank them and make sure they know how much their efforts are appreciated. Have urged all of my family to donate blood and register as marrow donors. A couple of years ago when asked what I wanted for Christmas, I told them the best gift they could give was to become a bone marrow donor. There may be some one out there they could match up with.
As an aside, my mom (93 yrs old) went into the hospital yesterday. HGB was 5.7. She had 3 units of packed red cells. Today HGB is 11.9. Not sure why her counts are low. She does not have MDS.
Thanks very much Carrie. -
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