Hi everyone need a little help!
 

Hi everyone!
Well went back today for my 3rd appointment and I think it was okay my Bloods Hgb 8.6 wbc 4000 and platelets 22 000 so no improvement just the white cells so at least one if them is moving.As I have said once before my doctor is Spanish so understanding is difficult but today he was great with me and took some time to explain so that made me happy.
So I am taking Cyclosporine 200mg a day and presidona 15 mg aday and tiday he has given me a new drug as nothing has really changed its called Revolde eltrombopag and and injection called bicrocit can anyone please tell me about these drugs if this all sounds correct? please? I also ask about hypocellur he said my bone marrow was 25% what does this mean should I be really concerned?? I also had another Biopsy as he said the first one gave the diagnosis but wanted another to do more tests, what tests might they be?? I feel ok slighty worried as this seems like a dream, I still feeling tired and lots of bruising and heart racing all these symptoms are normal I know, but when I look at my counts other people seems to have much worse. He said also in this paticular hospital in a year he sees about 4 people with this diaganosis I then asked how are they now and to be honest he did not say much!

I have to go back on the 5th August and I hope things will improve he said if not he will start medicine through my viens.

Thanks for being there any help would be apperciated much love and wellness to everyone Sarah x

Sarah,

Eltrombopag has trade name Revolade in Europe and trade name Promacta in the United States. Search these forums for "promacta" and you'll find discussions about it.

See here for a general description of eltrombopag and here for information about its use for aplastic anemia patients.

Sorry, I've never heard of bicrocit, if that's the correct spelling.

Thanks Neil
 

Hi Neil Thank you for such a quick response,
I will look further into these medications many thanks once again.
Sarah

Hi Sarah,

What is your age? Normal cellularity is typically 100 minus your age. So a cellularity of 25% would be normal if you were in your 70's.

I am guessing that your injection may be Procrit?? This is an EPO shot. Did they measure your EPO levels first to determine whether it will likely be effective?

Again, the rise in WBC is likely a side effect of the prednisone. Did the doctor say why he prescribed this?

I would still recommend a second opinion from an expert in AA/MDS. Although your hematologist may be the best in the area, having only about 4 patients at the hospital in a year means that he is not an expert in this specific, rare disease. You have time now while you are not transfusion dependent and things are low but stable. You don't have to switch doctors (or even tell the other), just get a copy of your records and get another diagnosis/treatment opinion.

Best of luck!

Hi hopeful,
 

Good to hear from you. I am 44 yrs so its out slighty only being 25/30%. He said the injection was to help with Anemia. Sorry Hopeful as I am learning EPO?
Presidona is to help with my defenses so yes its helping, thats a good sign is it not. Also maybe you can help as my levels have stayed the same now for 3wks would that mean things could be looking up? Or is this how the disease works?

Thanks for your help xx

Hi Sarah,

I really think you should get a second opinion. You want to be confident in your diagnosis and treatment plan before trying too many new therapies. I had three opinions before beginning treatment.

The rise in WBC because of prednisone is not real. If you truly have AA, as soon as you stop the drug, it will go back down. Meanwhile prednisone can have some very serious side effects. So you don't want to take prednisone without knowing why. Don't be fooled by the false rise in your WBC.

EPO or Procrit will help your body produce RBCs if you are deficient in EPO. If it does work, it is not a cure, but a bandaid to get your RBC's up while your body recovers some other way. Hopefully, it will work for you!

It is good that your counts are still stable, but it would be better if you saw a rise in your hemoglobin or platelets (without Procrit/EPO). That is what you are looking for. Be patient, but use this time wisely. Things can change quickly so you want to be sure to have a plan in place if they do.

Hey sarah
 

My mother has mds related aml...
Her counts also went low a month ago platelets 28000 HB at 7 wbc at 2000
Then DR. Prescribed this revolade but nothing has change her platelets kept falling...BMB was not showing any blast ..chimerism was 100% donor
But cellularity was only 6%
They again did the BMB after 15days and then results came..she had 27% blasts..one thing should be noted here that just before 15days her BMB was showing no blasts at all.
This disease is unpredictatable..
Now she's on vidaza
Today she had her first cycle of vidaza (azacitidine 100mg)
Well in your case I think it may be the case of drug induce.
Are you on cyclosporin or bactrim??


Hoping for the best
I will keep you in my prayers
God bless you :)

Sorry
 

I just saw that you have written you're on cyclosporin
Sometimes immunosuppressants could also be the reason behind falling platelets..
Once my mother had this problem but when they stopped cyclosporin her all counts bounced back to the normal..
So may be this drug is the reason behind your falling counts.

Hey Sarah
How are you doing now..??

Hi Shikha
 

How Are you? Thanks for your reply so grateful and helpful,its been a couple if days since i looked so sorry for not getting back sooner! How is your mother now? I am doing okay still in denial and disbelief I think finding it really hard to show any emotion, reminising a lot and hoping I will be back to my old self again soon! What i am finding tough is that I am tired so often wake up ok then by 10 ish ready to sleep also the heart racing even when I walk up the stairs I keep thinking "next time I walk up the stairs this is not going to happen and I will be better" I know its time and patience,spending so much time on the sofa is just not me.
I have been taking elmtropag for 1 week now hiw long does it take to take effect? Also I am suffering with headaches thats quite normal isn't it? Keep in touch much love and wellness to you and your Mum xxxxxx

Hey Sarah
I m really very sorry for replying that late.
Well I am great and my mom is responding well to the vidaza I think however her platelets are too low only 3000
But still I believe that almighty is helping her to combat AML
How are you doing now??
You said you feels so tired at times don't worry once your counts get rise this tiredness will diminish.


Eltrombopag ( promacta or revolade ) will take at least two weeks to work...
Use balms for headaches and yeah its very normal to have headaches when you have critically low blood counts...
Hope you're doing better..

I know its really hard to over come mental stress..
But I know you're so brave and so strong..

Hey get back to me sooner if your still in wait and watch situation
And have low counts may be some AYURVEDIC treatment will help your counts to get back normal to some extent..
Just get back :)