Feeling confused!

[Sarah Roman]

Its been a while since I posted but was just wondering if anyone can help for anyone that has read a post before I live in Spain but I am English my treatment has been good I do feel that I have been looked after but there is always a but! my consultant seems very rkaxed about most things!

So I had Ratg Sept 2016 along with Ciclosporine and Eltromopag so to cut a long story short I came off Ciclo in January and carried on with Eltromopag things seemed ok none of my 3 bloodlines have never quite reached normal but as I read so many times maybe for me that was my normal. So I have had bloods 3 monthly and April until July my platlets dropped 40 thousand but my other two bloods were not to bad then July until last wk I know have 40 000 the have dropped so from January until niw they have dropped 103 000, I feel worried as all 3 of my bloodlines last Friday had 2 stars beside them they were all below what they should be, so consultant has upped the Eltromobag and I am now taking Ciclosporine again. Please my question is out of a possible 15 tests in the CBC 10 of them had double stars does this mean my marrow is rejecting the medicine. I still believe this is all a dream and I do not believe the results when they come back, I feel like a fraud as I dont look so bad but I have lost my appetite and inside my body sometimes feels like its sleeping and tingling, I do hooe I am making sense to you.

When I try to speak to him he is like "oh dont worry" so not quite sure how to approach this. I go back Dec 15th to see how things are I worry that time is passing and maybe he should be looking a bit deeper into this. I have had 3 biopsies at the beginning should he be doing another?

Feeling lonely and it all feels a little sureal Please help?

Much love to everyone x

[Hopeful]

Hi Sarah,

I would insist on another BMB and more frequent blood testing. A significant drop in platelets is a sign of a relapse, and 103k is a significant drop! (40k is pretty significant as well.)

Sometimes restarting cyclosporine can prevent a full-blown relapse. Were you restarted on a full dose? If cyclosporine can't turn things around, you will likely have to go through rATG again.

I wouldn't think of this as your body rejecting the medicine. You may be one of the people that requires cyclosporine to maintain your counts.

Sorry this is happening. Hopefully the cyclosporine will work.

[Sarah Roman]

Hi Hopeful,

Thanks for helping and giving me more of any idea, yes I am taking 200 mg Ciclo and 75 Eltromopag so I hope this helps again its all so worrying but as you said if not Atg again I dont mind as long as it helps!! When I go back in December if there is no joy I have decided to go back to England and see a private Hematologist just to have an opinion. I know each hematologist is different so I will see.

Also I keep thinking about Aplastic changing into something else as all 3 bloodlines have dropped does this happen very often in cases, I know we are all different just talking to you makes a difference and gives me more of a understanding!!

I know my levels are not life threatening what is the more significant percentage or absolute as my wbc percentage was ok Wbc is 2.2 andy neutrophils 1.17, Rbc 2.2 . Hemoglobin 9 and platlets 40 000 that all seems ok doesn't it and the other cells had 2 stars but I cant remember exact amounts.

So your advice is to have another biopsy and see whats happening he always dont need one as you can tell by bloods??

Thank you so so much!

[Hopeful]

Hi Sarah,

Sorry for the delay in getting back to you. It was Thanksgiving Day in the US

I think that you are wise to consult a second opinion in England.

I would ask for a BMB because of the significant drop in your counts in multiple lines. Only with a BMB will they be able to tell if the drop is due to a transformation to MDS or if it is due to relapse. Also, I think it would be interesting to see the effect of Etrombopag on the cells in your marrow, especially if you are continuing with this drug. Because Etromopag can increase the risk of transformation to MDS, I would want to rule this out!

I was able to stop a relapse by restarting cyclosporine and am dependent on the drug to maintain my levels. Hopefully, restarting cyclosporine will work for you. If not, because you responded to rATG before, take comfort that you are more likely to respond to it again.

Good luck!