46 replies to this topic

[theresa55]

Great articles.  Thanks for all your research.

[RhettC]

What impact does diet and / or exercise have on Gleevec side effects and on CML itself ? Any research on this out there ?

[PhilB]

There are several different questions to look at re diet and exercise:

Will it help the drugs fight the CML?

I don't believe there is any evidence to suggest that it will.

Will it hep with the side effects?

Yes for some side effects, to an extent.  If you have nausea / bowel issues then some foods may make it worse and should be avoided.  Depression will be helped by exercise (if you are able) for most people.  Keeping fit will probably help you cope with fatigue better than you would otherwise.

Will it make a difference should I need a BMT?

If you are fit and healthy then you are probably more likely to do well.

Will it help me cope with everything?

Long walks in the hills - probably yes.  Giving up chocolate - No.

[RhettC]

Had lab work done today . Nurse called back and said there was a "slight concern"  so Im looking for some real input here .

Here are my recent lab results :

4/20 : WBC 6.4  Plateletes  1119

4/23 : WBC 4.7  Plateletes  874

4/28 : WBC 3.6  Plateletes 854

5/1  :  WBC 4.3  Plateletes 841

5/6  :  WBC 5.6  Plateletes 964

Obviusly WBC have gone up the last 2 times and Plateletes rose considerably today . Is there reason for concern ? Has anyone experienced something similar ?

Rhett

[dinasperrys]

Hello RhettC

Your wbc is fine - on the low end of normal, and the doctors seem to prefer this. I don't know much about platelets, mine have always been within normal range...maybe someone else could comment?

Your counts will jump around, particularly during the early weeks and months, the doctors expect it - for example, for most of us, our wbc on diagnosis was anywhere from 20 [thousand] upwards. Mine was 100 [thousand] and I have heard of others with counts up around 500 [thousand]. So you can see that a jump from 3.6 to 5.6 [thousand] is not likely to be a cause for concern. You are right, the doctors will look for a trend upwards, but to far higher numbers than this.

Hope that this reassures you with the wbc - and that someone can tell you about platelets soon.

Take care.

Jan

[hannibellemo]

Rhett, Your WBCs are well within "normal" range even if they have gone up the past two times. I don't consider that a negative, especially since mine have gone down consistently since I was diagnosed in Dec. and I am now 'off' G for a week or two to let my ANCs recover.

My platelets took much longer to stabalize and they are borderline low at 105 4 months later but stable. Did the nurse say what her concern was? Do they not take courses in how to talk to patients? That drives me nuts! Like the doc who called his patient on a Friday to say there was a problem with a test but wouldn't say what it was until their Monday appt. But, let me step off my soap box and get back to your question. I've always been told that trends are the thing. Your platelets were coming down slowly and you've had a burp. That is not a trend. WBCs  increasing but still well within the normal range is not a negative trend, but wouldn't it be helpful if your doc (or his nurse) told you that? There's that damn soapbox again. 

[Trey]

You are just 6 weeks into this, so it is difficult to definitively say there is an issue this early on.

The WBC counts are very good.  There is no concern over what is a very small increase.  Most likely you will be hoping for such WBC numbers in a couple months, as WBC can often drop after a couple months and remain too low for a while (hope you are an exception).

Regarding platelets, they are often one of the last items to stabilize, as I have mentioned.  But yours started very high and remain very high.  That is something to watch, and you should ask your doc about blood thinner if there is any concern about heart problems.  If they start coming down in the next couple weeks, all is well.  If not, that could be a reason to consult a specialist, as you have been wondering about.  But in general, bouncing platelet counts is fairly common with CML.

[RhettC]

All

REALLY appreciate the responses !

I have had a cold / sinus infection for a week now. Would that have any impact on plateletes ? I go back Friday for follow up lab work. I am doing this about x2 week now .

Rhett

[RhettC]

Trey,

To your point on the blood thinner.....I take a baby aspitin everyday and have for about 10 years . Dr said to keep taking along with alapurinol . I run daily and work out and Dr does not seem to be concerned about that. No previous heart problems . Thanks

[Trey]

Aspirin in your case is likely a good idea.  But the Allopurinol is no longer needed since your WBC is back to normal.

[PhilB]

Quote: "But the Allopurinol is no longer needed " - unless of course, like me, you had pre-existing gout.

Phil

[RhettC]

No gout.....but I did have kidney stones a while back.

[RhettC]

PhilB

I know you had a similar issue wirh plateletes early on.......did yours bonunce as much as 120k over a week. Could plateletes be influenced by a common  cold / sinus issues ?

[gunner]

Rhett-

You asked about any bounces in platelets. My platelets were never as high as yours, but you can see that there was a significant bounce on the 13th of January.

Date	WBC	PLT
12/2/2008	25.7	469
12/9/2008	18.5	466
12/16/2008	16.9	414
12/23/2008	12.6	314
12/30/2008	10.3	320
1/13/2009	9.5	549
1/20/2009	9.55	279
2/3/2009	9.1	263
2/17/2009	8.8	286
2/24/2009	8.2	265
3/31/2009	8.75	264
4/21/2009	8	304

December 2nd was the first day of Gleevec. So at 4 weeks the platelets were at 320, 6 weeks they were at 549 (a jump of 229), 7 weeks at 279 (a drop of 270). The missing week was speant on a vacation, where I learned that I am now very sensitive to overdoing sunshine! So something caused the platelets to spike up, and then they dropped down again.

-Gunner

[RhettC]

Gunner

very helpful to look at someone sles numbers and trends ! Stay in touch.

Rhett

[RhettC]

Date	WBC   (3.0 - 10.9)	RBC   (4.50 - 6.00)	HGB  ( 12.0 - 18.0)	Plateletes  (150 - 400)	Neutrophils  (1.4 - 6.5)
3/20/2009	49	4.83		2300	33.5
3/31/2009	42.5			2757
4/3/2009	29.2			2178
4/8/2009	17.2		14.2	1974
4/14/2009	11.9		14	1756
4/20/2009	6.4	4.8	14.6	1119
4/23/2009	4.7	4.85	14.3	874
4/28/2009	3.6	4.79	14	854
5/1/2009	4.3	4.76	13.9	841
5/6/2009	5.6	4.8	14.1	964
5/8/2009	5.9	5.05	14.8	991	4.06

Trey,

Any thoughts on the growing platelete counts. Dr seems to have no idea. The yellow highlighted area is the 30 day mark for Gleevec.

Rhett

[devon.malia]

I was just diagnsed with CML yesterday after having been cancer free( from Angiosarcoma) for about 7 years. I am kind of at a loss. Confused, angry, scared, and just baffled by this diagnosis. I am 31 and a sixth grade teacher- I have a life and responsibilities and dealing with cancer now at this age and at this point in my life almost seems harder than it did the first time. I picked up my bottle of Gleevac at the pharmacy, but have yet to pop my first 4 pills. I am apprehensive to start my treatment...partly due to the fact that I know almost nothing about the disease or treatment I am about to embark upon. I got the diagnosis over the phone, and was told to just pick up my prescription at the Chemotherapy Pharmacy- I barely even got a consult, and am not meeting with my hemotologist until Wednesday. He felt it was urgent to start the medication now, but I feel torn and unsure and feel that I need that face to face discussion before I feel comfortable about starting it. Is that bad? Are my white blood cells really rising as we speak? I also have a benign liver tumor and worried about that being effected? I don't mean to sound negative and am happy to see that this resource and support system is available to me- everyone seems so positive and I look froward to feeling that sense of hope soon too. I am just not there yet...I look forward to talking with anyone. Thank you.

[AnnieB]

Hi Devon,

So sorry to hear of you Dx. I was newly Dx. in March of this year and have found this site to be very helpful and encouraging.  Trey among other's is a wealth of information.  As for receiving your Dx. over the phone (especially after what you have already gone through) I am truly at a loss as to how someone could be so cruel to deliver such new's.  I do not know where you are from or what stage you are in, but you mentioned taking your first 4 pills of Gleevec.  Please confirm how many pills and what milligrams your Dr. has prescribed for you to start your treatment.  How did they get your Dx. was it from blood test or BMB?   Please I can truly understand how upset, angry, scared and bitter you are right now  ( and as I was told at first, never, never, feel bad about posting your feelings on this site, that is why we are all here and we truly can relate).  Please give more info. as soon as you can.

Where are you from?

How did they confirm Dx.?

What stage are you in?

How many pill's and strength do they have you at?

And I would suggest Posting a Thread to get Trey's attention on this, he would be able to help you with the the logistic's re: CML, Gleevec, diagnostic's and such.

Hope this help's

Angie

[devon.malia]

Angie,

Thank you so much for your message. So, I am living in Northern California- Sonoma County...and was "pre-diagnosed" first by a blood test- wbcs were at 55,000, then conclusively by the results of a bone marrow biopsy...the doage I was prescribed is 4 100 mg pills a day- so 400 mg of Gleevec a day. My friends actually had to come over last night and kind of stage an intervention of sorts to get me to actually swallow the darn things...but, I finally did and started the process last night...no side effects yet...so don't quite know what to expect. I look forward to talking to you more!

Take Care,

DEVON

[hannibellemo]

devon.malia,

Especially sorry to welcome you to our group since you have been through it before. I can only imagine the shock you are in right now. I recently read an article that indicated that those of us who have had cancer are at greater risk of developing other cancers, too. That totally sucks! This is a great site for good information and support. Hope you will find us a friendly bunch. Good luck.

Pat