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hi - I have been lurking on this site for a few months now, following my diagnosis in August 2010. I am on the Spirit2 trial and am Dasatinib. Had to come off it after a month as everything crashed and ended up having blood and platelet transfusions. I am married with 2 boys, I am 41. I am keeping pretty well physically and side-effect wise -I am still getting my head round the emotional stuff. Have been encouraged by my consultant and others, and have a good family & friend network, but am still learning about living with CML.

best wishes to you all for 2011

Hi,

My story is similar to yours, I too was diagnosed in August 10. I am on 400mg Glivec and my blood levels crashed as well after a few weeks on it and I ended up having a transfusion. I re started it after a week off it and have been fine since.

I'm treated at the Royal Derby hospital what about you? where are you from?

I'm 38 btw married with 3 children.

Take care

Jackie

Hi ,

 I was also diagnosed in August and selected for Dasatinib on the Spirit2 trial. It looks like the problem you had with your blood counts is a common issue when starting on Dasatinib. My Platelet count went down fro 325 to 83 in the space of 3 weeks. I was closely monitored for a few weeks and had it gone below 50, I would have had to have a break from the medication.

Thankfully, the Platelet count started to rise over the next few weeks so the issue went away. Keeping fingers crossed.

 

Like you, the side effects are generally pretty minimal, with just an occasional rash ( a bit like Acne) and swelling of the eye lids, which last a couple of days. I've identified the  increased swelling with when I don't  drink enough water during the day.

 

Good to hear you are keeping well and coping with the dx. It's really tough coming to terms with it to start with but this site is  brilliant and helps tremendously.

 

Cheers

Dave Marsland 

I would like to welcome all of you to this forum. Regarding crashing counts you could look at that phenomena in a positive way..... i.e it mean the drug is doing its job and getting the abnormal CML cells to self destruct. The uncomfortable fact is that these abnormal cells have be reproducing themselves for some time and their ever growing numbers (owing to immortality) means that all the available space that allow for growth of 'normal' cells is diminished over time. Time is the healer here- and as you go on your 'normal' cells will be allowed to replenish their populations. It might take up to a year or even more, but you will get there.

As for the emotional side of diagnosis..... I am still dealing with it 12 years on and some days are better than others. I do not think that one can ever have the same viewpoint about 'life, the universe and everything' after  a diagnosis of cancer. However- we are- as CML patients- in a good place re: therapeutic options available and the general prognosis of CML since the revolution of TKI therapy. We -or at least the majority of us- will live out our normal life span.......... maybe not quite as care free as we imagined it to be, but we will get the chance to live it.

Forums like this one have been crucial to my own emotional well being over the last decade.... the internet is so important to cancer patients and will become even more so. Sharing updated information and the common experiences we- as cancer patients have- is the key to survival... both on the physical and the emotional planes.

Keep updating and sharing your stories and experiences here- be determined to live as well as you can, no matter what 'life' throws at you!

Sandy

Ps. If at all possible I recommend that you try your best to attend the upcoming UK CML patient and carer seminar on Saturday January 22nd in Liverpool.

I have seen a copy of the agenda for the day and it looks really interesting........... plus it gives you a chance to meet others who are in the same situation as you are- of have been at some point- and believe me this is the most powerful medicine.  

Hi

My story also not that different and I wanted to echo some of the things Sandy says.

I was diagnosed in May 09, at age 42.  I have two children then aged 7 and 9.  I presented with a high platelet count but only moderately raised, but increasing, WBC.  CML wasn't the immediately suspected culprit but that's what it turned out to be.  I have a very rare transcript which is I think why it was all "odd". This made me particularly concerned - how would I respond compared to others given this situation? Would any of the "statistics" (and I mean the good ones) apply to me?  Fortunately, the Hammersmith were reassurring and while the initial couple of months on Glivec were very anxious, things looked much better fairly quickly.   I had an initial neutrophil dip which resolved itself after about 3 weeks - I didn't come off the medication because it stayed high enough that I was OK.  I thought of that period as clearing out the duff cells and then the good ones taking over again - I guess there is more "clearing" to do with some than others, hence it can take differing lengths of time to get everything back to normal, and some may need a bit of help along the way.  But most get there.

Emotionally, the initial period was worrying and with children there can be added emotional worries - but as time has gone on, and things have settled down, the worries have subsided.  They don't go away completely of course and probably never will - I still find it difficult to know what to think and exactly how to live with it, and that continues to change. I suppose we each learn to do that in our different ways, and those probably inevitably change over time.  Still, overall I actually feel quite lucky - that we have so many more and better options than we had a dozen years ago.  

Richard

Thank you all for your replies and shared stories - it really does help. Unfortunately I couldn't make the conference but I am glad that many did and found it helpful. Jacky - I live in Somerset, am being treated at the Bristol Royal Infirmary as part of the Spirit 2 trial. Blood counts seem more stable now (platelets got a low as 12 when I crashed!) but all seems more 'normal' levels now. Am next seeing my consultant in March. also have a BMB then which is when we will get a better idea of what is happening I guess. Best wishes to you all...

Hi, I live not too far away from you in Devon. if you would like to meet up for a chat you could e mail me ali@loram.eclipse.co.uk 

hope things are settling down for you.

All the best

Ali

sorry Ali been a tad slow in replying. Thanks for your e-mail - will be in touch soon.