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Hello everyone,
my name is Bob Osborn, I am 45 years old, married & have 2 children. I was diagnosed with CML in December 2008, & am having treatment at Stoke Mandeville Hospital in Aylesbury, Bucks.
My diagnosis followed a blood test after I had my eyes examined & bleeds were found at the back of my eyes. My initial blood count was 286,000, & I was started on Glivec that day, & after 8 weeks of regular checks, my levels were back to normal.
Unfortunatley the Glivec has not worked so well on my bone marrow, with it only clearing down to 86%. I am due to have another bone marrow test in september, & if this is not any better a change of drugs is the next step.
Throughout all of this I have felt a bit of a fraud, as I have never really felt unwell, & have not missed a day at work, but perhaps I am just lucky. But now that we have started to discuss bone marrow transplants, it all seems a lot more real & worrying.
Having said all this & after reading a lot of the personal stories here I realise that all is not lost & that there is lot more to be done yet, & that with the help & support of family & friends anything is possible.
My best wishes to everyone who has contributed to the site, as it must be a great help to all those who have read the stories, & can take great comfort from them.
Bob

Hi Bob,Your not a fraud mate it hits us all in different ways,Glivec is good for a lot of people,(all that water you have to drink and empty out,LOL)but the second generation drugs are fine tuned and ready to go,lots of people do great on them.
The outlook for CML has improved greatly,look at the number of oldtimers on the forum.
take care Michael

Hi Bob,

I don't believe that your are receiving optimal treatment with your CML. You may want to consult with one of the CML experts.

Two red flags were raised in your report.

First was the discussion about a transplant. In this day and age there are very few transplants done for CML. Did they tell you about the mortality rates of the procedure. 50% of those patients are dead within 5 years.

Second flag was that even after 6 months without achieving an MCR they did not increase the dose of Gleevec, switch to another TKI or do any mutation testing.

You might just be one of our 'turtles' when it comes to CML treatment. It takes them a long time to respond, but in time they all cross the finish line.

Good luck,

Zavie

Zavie Miller (age 71)
Ottawa, Canada
dxd AUG/99
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
3.6 log reduction Sep/08
e-mail: zmiller@sympatico.ca
Skype: Zavie Miller

Hi Bob
I am one of the turtles (std term for us slow responders) - after 6 mths my marrow was 85% Ph+ and I could not increase the Glivec dose as my white counts were very low. Between 6 and 9 mths the Ph+ fell to 15% then 0% at 12mths. During this time it was depressing to read (how selfish was I?!) how quickly everyone else seemed to be responding. I too had a lot of discussion about transplant at the 6 mth point but with 4 young children regarded it as my last option. All this was 5 and a half years ago - my PCR has wobbled downwards and is now at very low levels and my small children are no longer small.... It is possible that you too are a turtle. Equally it is important to be aware that there are now other drugs around, that mutations can be tested for - I would certainly not be too keen on a transplant until all other options have been explored.
All the best
Annie

Sorry to hijack your thread but can I just ask why people are so against bone marrow transplants? Having just been diagnosed (and in blast crisis too) I have been thinking that having a transplant would be a great thing- am I wrong to think this?
Rebecca

Hi Rebecca,
I'm sorry to hear that you've been diagnosed in BC.
A few years ago, before Glivec, most of us would have had to have a BMT because the only treatments available were very hard to tolerate and didn't always give good results.
We now have the "luxury" of giving Glivec & the other drugs "a go" to see whether they work before going down the BMT road.
Unfortunately for you, your leukaemia has been diagnosed at a more advanced stage and although you may get success with Glivec, some of the other drugs or even chemotherapy, you'll probably have to undergo a BMT.
This process is obviously harder to tolerate than our drugs but BMT treatments have come a long way too during these last few years & Drs are also very good at coping with any side effects you may experience.
One good thing is that if your BMT works, you'll be cured for life, whereas we'll still be taking our drugs (with their immediate any any long term side effects they might cause).
I hope that this answer makes sense, I thought long & hard about how to word it.

Thanks for your reply. I guess I have to remember that everyone is different and at different stages, so if the docs suggest a BMT, then it's the best thing for me. I just hope they can find a match!,

Rebecca

Dear Bob

We must live quite near you as my 17 year old CML son is currently seen at the JR Paediatric department. We have already had a second opinion at the Hammersmith Hospital and we are waiting for him to be 18 so that he can be refered there for all his treatment and follow-ups. I would strongly suggest that you get yourself refered there for a second opinion as they really do know all about CML. You will have easy access to any drug/therapy trials as they are run from there and the very latest treatments.

The regional hospitals do their best but do not see many many patients with this type of leukaemia. At the Hammersmith they have very many patients with CML on their books and have a great deal of knowledge about the disease.

I've always asked lots of questions which has been challenging for the Oxford doctors.
My advice is to make a fuss and be your own expert. My son would have had a transplant a year ago (with all that entails) had we not questioned the Oxford consultant on the validity of doing so. He is currently at a PCR of 0.1 so at the moment there is no need to do anything drastic.

The very best of luck with it all.

Sarah

Hell All,
Thanks for your comments & words of support, they are mucjh appreciated. As I said in my original post, we do have other medication to look at before a bone marrow transplant, so hopefully things will workout, & it wont be required, but i suppose some preperation is better safe than sorry.
I do hope to get down to the Hammersmith for the next patient & carer day, once the date is known. At Stoke Mandeville Hospital they do refer patients to the Hammersmith when results dont go well, so yet another iron in the fire so to speak.
I will be looking at other peoples posts & making a list of questions to ask when I have my next appointment in September, when I will go with my with & her father, as he as an appointment at the same clinic, he suffers from CLL.
Speak to you all again soon
Bob

Bob, Sarah and Zavies posts are excellent please think about them,My view is if specialist CML units were not helpful/needed they wouldnt be in such demand.

Hello all, I am from Johannesburg, South Africa, and was diagnosed with CML last week, there does not apear to be a local CML support forum in SA so I hope nobody objects to me being here.
My condition was confirmed yesterday, and my treatment will be Gleevec for the rest of my life, I am currently 49, married, and have a 14 year old duaghter that went through chemo and radiation 7 years ago for a stage 3/4 nephroblastoma (kidney cancer) she is in full remission and doing extremely well.
I still have to get used to all the terms and blood count readings for my condition,at the moment I feel fine,I've had flu a few times this winter (your summer time) hence the diagnosis, I went to the Dr. to prescribe something to refresh my energy levels.
I start with my treatment tomorrow, I have an appointment with a dietician next week only, I was told to take the medication after breakfast with a large glass of water, what size breakfast would be advisable?
Looking forward to sharing the ups and downs of CML with all of you.

I started with my Gleevec treatment 5 days ago, no side effects whatsoever. I take my tab after dinner with a large glass of water, have another glass before I go to sleep. Can't wait for the 1 month mark where I should start feeling a bit better, having a blood test this Friday.
Hopefully on my way to feeling normal again.

Had my first blood tests yesterday, my white blood cell count came down from a starting point of 190, to 118, not bad for the first week's treatment, my oncologist is very happy with my progress.

Hey Bob

true. All is not lost. I am newly dxed in Oct 15, had floaters in my eye and that is how i found out. BC was 450,000. Now on Dasanitib for almost 6 months. Will have aches and pains but life goes on. Can be depressing at times but i look at the post in this group and it keeps me going. Sometimes i dont believe 100% what docs say cause its not their body and they might try to test new things on ya. So be wary cause im certainly am. By reading posts in this group i educate myself the side effects etc. 

stay strong ok.  Wish for speedy recovery

stephen