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Low Platelet Sprycel.

Hi.
On 26 Feb, my 44 year old husband was diagnosed with CML. In accelerated stage. It was a huge shock. We have 2 kids.
First Week Hydrea, then Sprycel.. 2-3rd week infection and into hospital then counts were not good wcc 140 platelets 850 so back on Hydrea in addition to Syprycel.
Next bloodwork revealed wcc was down to 70 and platelets 430.
Dr ceased Hydrea to see if the Syrcel was working.
Following bloodwork 2 days ago. wcc 9 and platelets 32.
Spleen is now 10cm. Half from initial diagnosis.
Blood test for tomorrow to see if platelets are still going down.
Any advice...? Is this normal? What does it mean??
Has anyone been diagnosed in the accelerated stage????? Are you back in Chronic..... How long did it take..... were there complications.I am interested to hear from you. We are in a coastal town away from the major cities in Australia.

Should we get a second opinion from a Dr from the cities that may have dealt with CML more frequently?

Hi

Sorry to hear of the diagnosis - it's a very difficult time at first.

I'm sure you'll get some more answers, and I don't have experience of accelerated phase, but I did have low platelets (between 20 and 30% below normal) for about the first year on Sprycel (Dasatinib here) - they do bounce back, but a treatment interruption can also fix it.

I'm just over 2 years into Dasatinib treatment, and (for me) it's perhaps one of the best of the drugs around - there are side effects, but people have far more than I do, so I consider myself fortunate to have been allocated the drug.

Second opinions are always worthwhile, but in the main, CML and the treatment is a long term concept to deal with. When you're just starting out, it's hard to see it that way as you want immediate demonstrations of the long term prognosis, but in the main, far more people do well than otherwise, and you have one of the best drugs available at your disposal.

The numbers are dropping fast by the looks of it, and that's good. Platelet counts can be managed.

I hope this helps.

Rod

Hi,
I am very sorry to hear of your husbands diagnosis. I too was diagnosed in late chronic/accelerated phase in 1998 with a very enlarged spleen (I had a splenectomy on the work up to a planned SCT) - however, I managed to get myself on a trial in the US imatinib (or STI571 as it was then known) and responded very well to 600mg - I am sure if I had still had my spleen it too would have gone back to normal.
My platelets were on the high side at diagnosis, but not my white count as most were in my spleen apparently.

I responded very well for 3 years and achieved a molecular response within 18 months- however in early 2003 it was discovered that I had an imatinib resistant mutation (Y253H) and as there were no alternative TKIs at that time (dasatinib trials had not yet opened)I went ahead with a matched sibling RIC SCT (reduced intensity conditioning also known as a 'mini' transplant)in October 2003. I responded very well and still have no need of therapy.

If dasatinib had been available for me then, I would have responded very well to that drug as it is very effective in dealing with the particular mutation I had. It also has been shown to be very effective in the later stages of CML when compared to the other TKIs.

I agree that you should try to get to an expert centre- depending on where you live. Adelaide is the most well known CML centre in Australia, and I suggest you contact
Professor Timothy Hughes MD, Clinical Professor,Department of Medicine, University of Adelaide who will be able to advise you. He is one of the doctors who is at the forefront of CML research and is also a very nice person.

I have sent you his email address privately as I do not like to put email addresses on this public forum for obvious reasons.

I am sure your husband will continue to respond well to dasatinib as he is obviously doing already and hopefully his disease will stabilise within the next few weeks or so.

If you need any further help or information then please ask.

Sandy

Hi,

Sorry to hear you're going through this most worry time.

I was diagnosed 20 years ago and also in accelerated stage. I have been most fortunate in being treated the specialist unit in Leeds by Dr Graeme Smith.

I would urge you to try to get referred to a specialist unit if at all possible. I am testament to the fact that it's well worth the trouble.

I was initially diagnosed when already gravely ill in a District hospital. I was blue light transported via ambulance to Leeds. We were told I'd be lucky to see 3 months out! But I'm testament to the best specialist treatment throughout.

I've been through a gambit of treatment that in many ways would be irrelevant to you and because treatment has moved on so radically during this time period.

In my case I had an extraordinarily low platelet count and at the time I was told that I had the highest white cell count ever recorded. I also had an enlarged spleen, rapid weight loss and extreme shortage of breath.

Be hopeful though that I'm here to tell the tale.

After treatment with a range of stuff that merely kept me hanging in there I had a matched unrelated bone marrow transplant 18 years ago.

Then I went on Glivec when it was in trial 13/14 years ago and am still on it. I've had a great response and after just 6 months.

It works and that works for me. Appreciate though that when I went on it no one knew what would happen if you than came off it. So as it's never been a problem I'm in the group that's staying on it and seeing what happens.

I probably ought to say that I'm 63 now and fit and very active. I have no doubt I'll die one day but heck in the meantime I'm enjoying living and as far as I'm concerned I'm testament to great medical science, strong support from family and friends and some good luck along the way.

I posted a little more about myself over here:

http://www.cmlsupport.org.uk/node/8189

Good luck and all the best

Hi, shelly

I'm sorry to hear about your husband.

Why did the doctors say he was in accelerated stage? I have a friend who was diagnosed in that stage 12 years ago and he's doing great with TKI. This stage is much more complex, with a bigger chance of mutations, but there's hope as you see. your husband need to be monitored closely and be fully adherent to therapy. He's in a very good medication. the low platelets is very common in cml, specially in later stages, so don't panic. I was not in accelerated stage when i was diagnosed (maybe i could get there in more 3 or 4 months whithout therapy), but i had a big spleen ( bellow my belly button) and now it's normal.

Best whishes,

Lucas

More information about TKI therapy in accelerated phase:

http://www.specialtypharmacytimes.com/news/Patients-with-Accelerated-Pha...

More information about TKI therapy in accelerated phase:

http://www.specialtypharmacytimes.com/news/Patients-with-Accelerated-Pha...

Sandy
Thank you so much for your time in talking to me. I am so happy to have found this website which gives us a insight along with hope.
The positive feedback is very reassuring. I will make contact with Proffessor Timothy Hughes.
Many thanks again.
Hope you are travelling well also.
Shelly

Hi Lucas
Thanks for your advice- Much appreciated. Hope you are well on the way to recovery.

Hi Rod -you sound like your symptoms and treatment plan is almost the same. So glad you are doing well and appreciate your response. You have certainly given me hope in this learning curve.
Yesterday his platelets are down to 15 - the doctor has now ceased the sypycel all together. I suppose we just wait now... not sure of what lies ahead? Another blood test tomorrow.
Thanks again Rod.

Good luck on the test, he'll have to get very used to those! I think my biggest has been around 15 vials taken in one go, but some of the nurses are very good at it.

My partially-educated understanding about the platelet issues is that the Sprycel (or imatinib) is busy killing off a whole heap of stuff inside the marrow and blood, and it takes time for a regeneration (cell division etc) of the good stuff to get back up to a decent level to produce enough platelets. Effectively, your consultant is trying to reach a balance between getting the wcc down (which he seems to have done successfully) and giving the dasatinib-tolerant platelet creator cells time to regenerate.

Since CML treatment with TKIs is all about control, not cure, what's happening is a completely normal part of the process, and it's well enough understood (i.e. happened many times before) to be fully described in the Sprycel treatment guidelines from Bristol-Myers Squibb, the manufacturers.

Rod

you're welcome, shelly.

I'm doing good. actually, i only felt sick after the diagnosis (i think it was my mind and the fear). I live a pretty normal life with mild side effects (sensible skin). i have low platelets (86.000), but nothing to worry much. Now 'i'm waiting for my cytogentic and PCR exams. I wish a great recovery and a long and healthy life for your husband and you.

Best wishes,

Lucas