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Recently diagnosed CML

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.

Still getting used to this forum, I think I posted in the wrong place initially.

Welcome to the forum Kurt. Can we have a bit of African sun to warm our bones?.that large glass of water is a must,I took Glivec before bed as I had a few side effects so found it better to sleep through them.
Let us know how you get on please
Michael

Hi Kurt,

Welcome to the club that nobody really wants to be a member of. The good news is that CML is now a highly treatable disease.

I know 5 CML patients in SA that are doing very well on Gleevec. They are all members of the Zero Club and would be happy to speak to you. 3 of them live in Johannesburg.

Send me your email address and I will hook you up with them.

Zavie

Zavie Miller (age 71)
Ottawa, Canada

e-mail: zmiller@sympatico.ca

Skype: Zavie Miller

Thanks Zavie, sent you an email.

Hello Kurt,
There are one or two members of this forum from South Africa and I am sure they will contact you. Zavie is obviously able to give you direct contacts which is great.

Best to take your drug with lots of food high in carbohydrates as this seems to counter the common side effect of nausea. So you are right to take it just before dinner or the largest meal of the day. Dinner is good because you can sleep off the other very common side effect of feeling drowsy.

I am sure you will do well... this is a global forum and all are welcome here.

best wishes,
Sandy

I had my 3rd checkup today, WBC is at 3.8, just below the threshhold, the problem is my red blood cells were sitting at 6.4, the doctor has booked me in for the weekend for 6 units of blood, should feel better by Sunday afternoon. We have temperatures here of around 30C, good weather and lots of sunshine, guess what I'll be looking at for the weekend...
Lets hope thos works, I could do with the extra oxygen, always tired.

Hi Kurt

First of all welcome to the forum
I am in Johannesburg.Dx in Dec 2007 and started off on Glevic I am now on Tisigma which is working well Had bloods today and have an appointment with my onc next week, holding thumbs for my first Zero reading

Kurt Please e mail me on fish@icon.co.za so we can get together. I am at present trying to start a support group in Johannesburg and would really appreciate you input

Lets get together

Looking forward to hearing from you

"A Moment missed to give is a moment missed to receive"

Hi Trevor, have sent a general email with you listed as a recipient, yes, we need to meet up and discuss this CML.
I don't do skype though, computers and me don't get on that well.
Where in JHB are you? I am in Alberton.
A JHB based CML support group would be fantastic.

I finally got hold of my PCR results today, my HB is still a bit low at 9.9, was 12.5 after my 8 unit transfusion two weeks ago.
Anyway, correct me if I'm reading this wrong, my BCR-ABL is 39%, and my BCR/ABL ratio is 0.39000. These were the readings when I was diagnosed
Looks like I still have some distance to go.
Anyway, that will be the starting point, will get an update at my next visit.

My HB was 8.8 and was told I might need transfussion,not to keen on that so I ate lots of liver and blood sausege drank lots of orange juice and the HB came up,
As your BCR-ABL blood results improve and more normal cells are made your HB will improve over time.
Still very early days,your 3+6+9+12 month bone marrows will show a trend

Does orange juice make a difference? I cannot stomack eating liver or blood sausage, never could, never will. Orange juice is a favourite though. Would simple exercise not help?

orange juice helps absorb the iron from the liver(there are other iron rich foods and supplements),exercise is good,if you smoke of drink lots of alcohol stopping would be good,it all helps produce healthy cells

Kurt you must NOT have GRAPEFRUIT whole or as juice,ITS STOPS GLIVEC FROM WORKING,sorry to shout

I need to start doing exrercise again, but being short of HB makes it difficult. I don't smoke, gave it up 8 years ago, and dring very little, maybe a beer a month, and dislike grapejuice anyway. I guess limited exercise would be a good place to start.

I see grape juice is a big no-no, what about wine? Comes from grape juice so it could also be a no-no...

It is grapefruit juice you need to avoid not grapes or their juice. As for wine I still drink it with my oncs knowledge. Just don't over do it as Glivec can be pretty tough on the liver, as is wine.

Marian

Thanks Marian, good to know. I never read the 'grapeFRUIT' part, just saw 'grapes'. I heve never enjoyed grapefruit, so this will be no loss to me.
Wine in moderation, that's good. Thanks for the feedback.