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celebrations
ParticipantHi all,
I wanted to add that, whenever the VPA alone stopps working there is the possibilty to combine VPA with ATRA. According to a German study this combination may repeat the response for a while.
Fortunately I do not have blasts (only 1-2 %, which is supposed to be normal). I will have my next BMB on the 17th of November, then we’ll see if this is still true.
We all should go for the journey of hope.
There are some hopeful drugs in the pipeline.
Bye, BergitParticipantThanx for asking,
I am stil ON VPA with my HGB lingering between 9,1 and 9,5.
This still means NO transfusion. I had my
last one on June 26th, so obviously the VPA works with me, only that the HGB level is not as high as my doc and me would wish.
My hemo increased the dosage once again (from 900 to 1050 mg/d), but unfortunately there is no change.
Side effect: TIREDNESS.
I have to take at least one nap per day, because the VPA makes me extremely sleepy.How about your father, choik ? How is he doing ?
ParticipantDear Lynn,
that’s unbelievable and fantastic.
Unfortunately the VPA is not as effective with me. After 14 weeks of being tx-free with VPA, I am heading a tx with now 9,1 very soon.
Bye, BergitParticipantHi valproic acid users,
my HGB is holding between 9 and 10 with valproic acid ALONE. 9-10 is not very high, but the effect of not going further down, is the point.
Before taking it (= 9oo mg/d) I used to be transfused every 3-4 weeks wiht a HGB of 8.0 – 8,5. I think I wrote that before.
I have bee tx-free for two months now and pray that this is because of the VPA and that this will be going on.
In the first place VPA is given against epileptic spasms.
I have read that once the response will stop the combination of VPA & ATRA (all-trans-acid ??? english term is missing)will be another chance of response with mds-patients. I would certainly try.Dear Lynn, thanks for your private mail.
Greetings, BergitParticipantHi LynnI,
would like to get in touch with you.
Since June 08 I am on valproic acid aswell, I have been 8 weeks tx-free by now, hope this continues for a while. My HGB is between 9-10, no side-effects.
I will be back at work next week.
I am from Germany and the abstract quoted I
know very well,in fact there are no further sources, at least I have not found any, have you in the meanwhile ?
BergitParticipantHi, I have RARS.
All I know is that the percentage of RARS-people to develop leukemia is about 6 %, which is very much lower than with other types of MDS.
What obviously counts more – if or if not there will be a negative progress – are the cytogenetics.
Seems that there are better and worser abnormalities. I have a trisomy 8, which is supposed to have an intermediate risk (of dying sooner ?).
Keep your heads up.
BergitParticipantHi Joan and Marlene, what do your husbands take instead of Exjade to reduce their ferritin-levels ?
I will be put on Exjade very soon with nearly 1000 SF, that’s what my hemo said. He recommended Exjade, because Desferal is to be very unconfortable to be applied. Any experience ? Greetings, BergitParticipantHi Bill,
thank you for your reply.
Mine fits in very well into, what you describe.
Just saw my hemo today. He’ll check my ferritin level once more within a month’s range, before he will decide to put me on Exjade…
Also I learnt that 5 tx with two units each actually are 10 tx. So I have had 10 since February 2008.
BergitParticipantto get rid of iron overload!
You can say “to chelate”, can’t you use it as a noun “chelation”?
Sorry, I am from Germany.
BergitParticipantHi Lynne,
our cases are quite comparable, although I was only diagnosed in the beginning of 2006.
In the last 6 months though I have been getting 5 rbc-transfusions (always two units and always when my HGB has lingered between 8-8,7). My ferritin level is already 975.
My doctors keep telling me, that I will be getting chelated around 20 transfusions.
On the other hand they had told me that a chelation would be adviseable with a ferritin level over 1000.
So I am puzzled about the contradiction, can you help. I will ask, when I have my next apt.
BergitParticipantDear Zoe,
don’t hesitate to contact your doctor in case you have fever.
One MDS-specialist (Professor Mahlknecht,I met on a congress, shocked us MDS-patients with the following phrase, he put it very bluntly:
“Whenever you get fever Friday night, be sure to contact your doc immediately, if you do not reach him, go to some emergency room to check….
If you don’t go, you might be dead by Monday.
And take your antibiotics !”Good luck, Bergit from Germany
Participantdear Jim,
I’ve never posted so much….but have read many of your posts.
God bless you for your SCT in 2008 and you are in my prayers all the way from Germany,
celeParticipantZoe, I think we’ve met on marrowforums…I feel the way you do.
I give myself EPO shots once a week.
I started in April, when my Hgb was on 9,0..then it has developped well due to the EPO up to 11,3…I never have increased the dosage so far.
Since about two months the Hgb drops slowly, last time it was 10,0 only!
Although my hemo isn’t concerned yet, I AM
celeParticipantHi Dick,
I FULLY agree to you….in all points.AND I TRY HARD 🙂
Bergit
Participanthi Frankie,
what do you mean by “the first 10 years” of MDS? What kind of subtype do you have and what chromosomal defect…?
What kind of therapy are you undergoing?
Please tell me beside the smoking topic.Smoking is an addiction, some people cannot quit…don’t be too hard to your father, June, how shall he cope with everything. Even if everybody knows how harmful cigarettes are…
bergit
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