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Platelets have dropped - questions

Platelets have dropped today, down to 45.
I know it is not at any dangerous level but it does mean i have to stop Nilotanib for a week. I have been on it for two months so far and it has been fine.
Feeling a bit low as this is the first set back we have had since my diagnosis in March and I was doing so well; however I am still positive, I know it is a marathon not a sprint!
I have been told it is nothing i have done and just the drugs but i wish there was something i could do!
i have my 3 month bone marrow biopsy in july and i am worried it will affect the results.
Should I rest more (i have young children and i am very busy and active being a mum, although i am still off work)
Should I eat more/less?
Should i eat anything in particular?
My consultant said there is nothing i should be doing any differently but I feel frustrated and wondered if you had any advice?
Calm down would probably be one i am guessing!!
Thanks
Emma x

Your platlets might just bounce up on their own,That said a platlet transfusion is pretty straight forward.dont worry to much, think of it as a minor hickcup on your path to become CML free.,

Hi Emma,

There is nothing to worry about here. I was diagnosed last August and started on DASTINIB. After about a month my platelets dropped from 345 down to 86 and I was told that if it dropped below 50 I would have to stop. Fortunatley the count picked up after that and is now OK.

You'll find many people have the same issues around this and I'm sure after a week or two off the medication you'll be OK and be fine when you start again.

I find just keeping busy works wonders and no need to rest unless you are tired.

Good luck

Dave M

Thank you for your comments. I think i just had a bad day. Feeling a bit more positive now.
Thanks
em x

Look at it like this... it means that the drug is working. Most of your cells are leukaemic and the drug is designed to target and shut down those cells in particular. When this happens your cell population gets low as the 'normal' cells are in a minority. However, over time they will be able to grow into the majority as more and more of the leukaemic cells are inhibited and die off.

Simplistic explanation of what is going on but it might help you to visualise your non cml cells as getting stronger -

best,
Sandy

I am dx jan 2010 and was on Glivec 400, but that didn't worked for me, also the 800 mg didn't worked due to low counts. Now I am on Sprycel since oct 2010 and had to stop 3 times for several weeks, so they lowered the dose to 50 mg. Still low counts, hb 5,1, wbc 3.3 an platelets 21, now for over a half year. This coming weeks they will test my bonemarrow with a PCR test and if Sprycel does not give a good result I will getting a stemcelltransplant. I can't say I look forward to that, so I can only hope and pray that the Sprycel will be enough. Has anybody been there before?? Ancious for your reply's. Greetz Jolanda from holland

Hi Jolanda- sorry for the late reply. I am sure that your low counts show that dasatinib (Sprycel) is working at controlling CML even if it is working a little too well and therefore is causing you problems with low counts. I think that if you can hang in a little longer your 'normal' cell population will eventually recover enough to push your counts up to better levels... it must be very hard to live with a low hgb of 5.1 and also quite worrying to have platelets at 21.. you wbc it fine at 3.3.
I really hope that your doctors will find that the bcr/abl levels in your marrow is low enough to keep you on dasatinib for a while longer.
Best wishes,
Sandy

Hi Emma
sorry to hear of your concerns. My platelets dropped when I started dasatinib (went down to 12) and I had low Hb too. Had to have a transfusion which I was anxious about, but the specialist nurse talked it all through with me when I phoned up, so it really was fine. I also thought things like should I eat different food (especially as I'm veggie) but I don't think it works like that. (and since having the transfusion I didn't go on to crave steak :)) I think like others have said, just give your body and the drugs time to settle and hopefully you'll be fine. They're monitoring you well so they can keep you safe. Just give yourself time, and take good care.
best wishes
Jox

Hi everyone
Thanks for all your comments, had a rough couple of weeks, platelets kept dropping, white blood cells and neutrophils too so not been on Nilotanib for 3 weeks now. Just escaped a transfusion thank goodness and they are slowly rising now. I have felt ok, quicker to tire than normal, but the biggest problem has been with my mental attitude, I have been quite depressed. Really tried not to be, it is so unhelpful and at the end of the day I am still here and on a really good drug. I guess my question would be, did anyone else have a 'slump' after a few months. I am trying so hard to be cheery and positive but just feel so low.
Hoping getting back on Nilotanib will help, consultant really hopeful that this next lot of bloods will be up.
Thanks again
emma x

Hi Emma,

Of course we all try to be 'cheery' and 'brave' because that is what is expected we do. The public at large do not want to hear about cancer- let alone a Leukaemia- that's kids isn't it? ..... oh, you'll be alright! - your so brave etc etc

So give yourself time to be down- allow yourself to feel bad- not brave or cheery just to make everyone else's life OK.
You are right- nilotinib is a good drug, that is why your platelets have dropped so it is working well- over time- but this is a disease that takes quite a few years to 'bed in' so we need to remember that it will take some time for the few 'non CML' cells that were left to grow their populations- after being crowded out by the PH+ cells for so long.

I still get 'blue' days- just when I am feeling good and things are going well, a mood hits and I just feel down.... I now know it will pass and I just have to ride it out- and this is the way life is- even without a diagnosis of cancer ;o)

I am sure when you resume therapy you will feel more confident and feel like you are doing something to 'fight' the 'mind set' that a diagnosis of cancer can push us towards.

Life is not easy- but no matter how long or short, it can be so rewarding.

Sandy

Hello Emma and others,

I feel the same,I just heard my platelets dropped again from 21 to 17 on 50 mg Sprycel, so now they are going to do a PCR test to see if the Sprycel did enough to continue with it. If there's no result i probably get a BMT, and i'm not looking forward to that. Tomorrow I get my 6th bloodtransfusion and I know I will feel better. If you write I'm feeling down, same here, looks like it is never to recover and its a chain of bad news/results. But we have to keep the faith, I have to go on for my husband, kids and family. So I don't want to give up. Lots of Love Jolanda

Hello Emma
Your Doctor is right, diet will nit affect your platelets, well didn't for me. Nothing really to get to worried about. In my case they have been down to 2 at one time, and last Thursday an all time high of 150. I certainly have passed through many years with a value in the region of 40 -50, no problems. Hope this assists you.
Have fun and keep smiling

Keith