116 replies to this topic

[scuba]

I was diagnosed with CML on Tuesday.  And on Friday took my first Gleevec pill to help drive my CML into remission.

I have been on a roller coaster learning about this disease from a bio-medical point of view and trying to come to grips

with having Cancer.

I was slow to have a blood test - my wife forced me to get checked after I started getting fatigued and having unexplained fevers.

The blood test showed elevated white blood cells (37,000), borderline anemia, and normal platelets.  The lab tests showed CML.

I am wondering if there is anything I can do in addition to Gleevec to give nutritional support (vitamins/minerals?) to help Gleevec do its job.

Of course I am most interested in any new research that can lead to an outright cure and we can all get off Gleevec.

Any suggestions on where to go next to learn is most appreciated.  I am glad I discovered this site.  You all are so knowledgeable.

[Trey]

Welcome.  Your CML was caught early, which is good, so don't worry about putting off the visit to the doc.  Most of us did much worse.  Because you will have a high cell turnover at the beginning, it is important to take good vitamins, and especially folic acid, Vit C, and a good multi-vitamin.  Otherwise, good nutrition and vitamins are always a good idea, but there are no miracle cures in there.  Since Gleevec likes an acid environment for better absorption, I take my Gleevec along with my Vit C which is acidic (and also with my multi-vitamin).

Here is some reading, going from basic to more advanced:

http://community.lls.org/thread/2600?tstart=0

http://community.lls.org/thread/3349?tstart=0

http://community.lls.org/thread/2821?tstart=0

http://treyscml.blogspot.com/

[donnadavis]

,sWelcome Michael !

              I have devised my own method of taking Gleevec . I eat half my dinner , then a banana, take my Gleevec and then eat the rest of my dinner ! It work's for me, the people at Applebee's find it strange but that's O. K. ! My oncologist thinks  it's  great. Very good luck to you and a quick remission.

[scuba]

Thanks for the quick reply !

I didn't think my CML was caught early, but my levels do seem to be low (white cell count). 

Some more background:

I developed Pneumonia last July (2009) out of the blue.  I was a strong healthy - never been sick - 51 when the pneumonia hit.

I ignored it at first thinking it was just a flu (swine flu was big back then).  After six days of 102+ fever, horrible night sweats, my wife insisted

I visit the doctor.  I was given antibiotics which knocked the Pneumonia out in two days.  Immediate response ... but little did I know that I developed

Pneumonia for a reason.

Since that time, I have felt fatigue like never before and bouts of sudden fever that lasted only a day.  In December of last year - I got nailed again - not Pneumonia, just fever, extreme fatigue and a general feeling that something is not right.  In addition, my heart rate started to climb.

My normal heart rate is 65-70 when I am out of shape and 50 when I am in shape.  I stay in shape most of the time (running, etc.) - but let things go from time to time.  I noticed my heart climbing to 90 resting heart beats.  This was the trigger signal that something was up.

Finally after months this year, I started increasing my intake of garlic, zinc, vit C to ward off disease better and noticed that I felt better - anemic feeling was less.

And then a few weeks ago - my wife insisted on a blood test.

That's when I was diagnosed with CML.

I do wonder if I increase my zinc, vitC and maybe other appropriate vitamins, I can give my body a better chance of fighting this thing.

I am interested only in killing (apoptosis) the underlying cells somehow.

Thanks for all of your advice!

[scuba]

I also read that Green Tea is a powerful Apoptosis inducer in CML and should increase the potency of Gleevec.

Anyone else read that?

I'm sipping some green tea now ...

(but I also read that Green Tea is a powerful anti-oxidant and can counteract the Tyrosine Kinase Inhibitors (like Gleevec))

[Trey]

Michael,

You said:

"I am interested only in killing (apoptosis) the underlying cells somehow."

So are we all.  That would be a cure.  Some day a cure will come, likely sooner than later for CML.  But for now, we are grateful for the TKI drugs.

There is no magic cure in green tea, or any other nutritional approach.  But the nutrition part can be an important support structure that helps the TKI drugs work, and maybe help fight side effects.  But that can be different for each of us.

While there is no complete answer on the issue, Gleevec is generally thought to be unable to kill the most primitive CML stem cells.  But researchers do not understand everything about that subject.

[Susan61]

Hi MIchael:  This is all new to you,and glad you joined our discussion group.  You will learn a lot as you go along.  There has been some controversy on the Green Tea.  I take 400mg. Gleevec daily with a decent breakfast, otherwise I have some nausea.  I take a multi-vitamin, and I have had to add some Vitamin B-12 and Vitamin D-3 to my daily regimen.  Don't try to think about too much at once.  You just started on your  journey to fight CML.

I was diagnosed in 1998, and started Gleevec in Oct. of 2000.  I feel blessed to still be on the same dose since day 1, and have been in PCRU (undetectable) now for years.  We all try to support one another, and you will be surprised at how many people are feeling the same things you are.

     We have some very knowledgeable people on here to help all the time, like Trey.  We have so much available to us now, that was not here when I was diagnosed.  Take One Day At A Time.

WELCOME

Susan

[scuba]

Wow - Susan !  Thank you so much for your response.  You have been on Gleevec for 10 years! with no detection (pcru).

That is so encouraging.

You and Trey are spot on about how much I have been learning these last few days.  I am on Gleevec pill number 2 ... tomorrow is number 3.

And I have to tell you this is so not me.  My wife is all over me that my life must adapt.  We always eat well and enjoy wine every night with dinner.

I am still doing that, but make sure I take Gleevec in the morning to give 12 hours separation.

I have always been a strong believer in nutritional support for our cells.  I'll continue to read the blood journals to scour for progress on hematopoietic cell line apoptosis.

Some day, I hope they find a way to cause the cell that has the bcr/abl gene to die.  That's the cure we are looking for.

All the best.

[Susan61]

Hi Michael:  So glad you found some encouragement in my post on the boards.  Like I said it will take time, and do not try to fight this thing overnight.

Enjoy your life, and your wine with dinner.  Everything in moderation is what I believe in.  I think my biggest thing that I deal with is my Arthritis and weight gain over the years.  Everyone has different side effects, and you will most likely have some of them.  I have found they are tolerable, and nothing to get all worked up over.  I get foot spasms, and leg cramps, edema, fatigue and my biggest complaint has been the weight gain that I got with the Gleevec.  Not everyone has experienced that.  Then I went through some emotional eating, and just have never been able to get the weight off again.  I do plan on really concentrating on that problem too.

    Sounds like you have a very supportive wife.  That is half your battle.  My husband has been fantastic through this whole thing with me.  I did the clinical trial in NY when Gleevec was first introduced.  My husband used to take off work, and take me into New York for all my visits and testing etc.

    Hope to share a lot more with you as the days go by.  Enjoy the rest of the weekend.

Susan

[Trey]

You should read about the work of Tessa Holyoake:

http://cme.medscape.com/viewarticle/520562

http://www.timesonline.co.uk/tol/life_and_style/health/article4491852.ece

http://www.gla.ac.uk/departments/cancersciences/haematology/research/professortessalholyoake/

http://www.gla.ac.uk/departments/cancersciences/haematology/research/professortessalholyoake/researchdetails/

She is not the only one doing good work on finding a cure.  It could come from anywhere.  But come it will.

[scuba]

.... the worst part is the bone biopsy.  Anything but that.

[CMLtoday]

Have faith, take your Gleevac as you should and eat that banana  each day. helps with the cramps !!!

You will be fine, we are all fighters and are fighting the good fight.

[cryjohn]

Michael,

Just wanted to let you know I am beginning this journey with you.  I was diagnosed on May 6, 2010 and took my first Gleevec (little gem of gold, thank goodness for insurance) last night.  I was very surprised at just how anxious I was about taking a pill.  I guess it's because of the uncertainty of it all.

I too like you have always been very healthy and this came from out of nowhere.  It's seems from what I've been reading this is most people's experience with CML.  I am very active, exercise regularly, eat healthy (gluten free not by choice) and was feeling great.  Went in for my annual physical last fall and my white blood cell was 12,000 and platelets slightly elevated.  A week after my visit I rode the MS 150 bike ride, felt great.  My doctor told me to come back in a month to retest levels.  I did and WBC was at 15,000 and platelets where in normal range.  The doctor then said come back in four months to retest.  Ok I said thinking no big deal.

Around January I started not feeling very good, so much so that I did not do any exercise for 2 months (which is not like me).  I thought my not feeling good was related to my Celiac's disease so I finally made an appointment with a GI doc.  Because I was going to a new GI doc it took a while to get into him, another month passed.  By the time I finally saw the GI doc I was actually starting to feel better, but went anyway...just to make sure (the internal voice I guess).  He said he was going to start with blood work first at which time I mentioned that my WBC was elevated in the fall and I needed to follow up and see where it was now.  Not a problem, he said and added it to the long list of everything else. 

Once all test results where back, we met for a consult and he indicated that the issues I was having where not related to the high WBC and that I needed to go see a Hematologist.  The good news from the GI consult was that I tested negative for sprue (Celiac's Disease).  So, I'm either doing exceptionally well on my gluten-free diet or I never had it to begin with.  We're going to investigate that further once the CML is under control.  Oh, I forgot to mention the first WBC he did was 19,000, two weeks later it was 23,000.

So, made appointment in Hematologist and based on his quick look at my smear he wanted to do a BMB.  At my initial visit with him, he told me he thought it was CML, but needed to confirm with the BMB.  At the time of my BMB my WBC was 35,000 and platelet at 697.  Five days after the BMB, he called me to confirm it.

After really only about a month of extreme fatigue (and I do mean extreme) and terrible night sweats (which honestly I've had for 20 years I know, just not quite as bad), I now have confirmation that it is CML.

What a roller coaster the last couple of months have been.  So, like you Michael I will be learning as I go and am interested in learning as much as I can to find my way back to wellness and...back on my bike!

I am so appreciative of everyone here sharing their experiences and knowledge. 

Take care,

Crystal

[starlago]

Michael,

You can request conscious sedation for your bone marrow draws.  There may be some push-back, but it makes a big difference to my state of mind as I approach my 90-day markers.

[Goldfinger]

Are we talking about the same thing?  I had a biopsy when I was in the hospital and it was a piece of cake.

Steve

[Tedsey]

Michael,

My story is similar to yours.  I was always in excellent health, exercised and ate extremely well.  Always got a yearly check up and my internist and ob/gyn (just had 2 babies in the last 3 years) kept on telling me I was a model patient and extremely healthy.  I have studied nutrition since I was 21.  Eating well has been a huge part of my life.  It appears that there is very little support for what kinds of food really fight cancer (except a diet with plentiful veggies seems to be good for some cancers).  However, like Trey says, and you probably know this, it is always a good idea to keep on eating healthy.  On the other hand, there is much support for eating the right kinds of food to ward off diabetes and heart disease (and who needs that on top of cancer!).

Well...things changed in what seemed like overnight to me, (had a CBC and panel for insurance reasons right after I had my 2nd baby--this was 8 months before diagnosis).  I went from normal counts to 180,000 WBC and climbing by the minute!  I had absolutely no symptoms, but right before my yearly exam (when I was diagnosed), my belly button popped (enlarged spleen).  Thought it was a hernia and was glad my doc had a cancellation so I could get my physical early.  Umbilical hernias show up often after giving birth.  My friend just had one repaired.  Never thought in a million years it would be leukemia.

Hang in there.  Was admitted immediately to hospital.  Had no prep whatsoever for BMB.  However, it wasn't so bad.  Not painless, but I only had local sedation.  It was tolerable.  The fellow (not man, but doctoral fellow)  who did it was very gentle.  I kept dialog with him and he told me to tell him if it was pain or pressure.  When it was pain, he gave me a little more painkiller, then it was done in about 20 min.

I must admit I was forced to quit nursing cold turkey in hospital and my breasts were so engorged and sore, I think that that took the cake as to which was more painful.  I am due for my second BMB next Friday.  If Trey hasn't sent you a link to his blog yet, an iPod, DVD, or anything to distract you while it is happening can help (if you are not sedated).  Being anxious about the procedure factors into the equation.  Try to breathe deeply (helps me) if you get too excited.

Here is some wonderful information Trey put together that has helped me http://treyscml.blogspot.com/  Sorry if he already sent you this.

[scuba]

Tedsey,

My reaction to the biopsy was a surprise - my heart rate plummeted 30 beats and I began cold sweats.  It didn't last - 15 minutes or so.  I guess it really was anxiety - although I thought I only get that way on high swinging bridges in Costa Rica.  At least I know what to expect for next time.

It's interesting how most of us get this disease somewhat suddenly after fairly normal, more or less healthy lifestyles.

Thanks for the feedback.

[PhilB]

"the worst part is the bone biopsy.  Anything but that."

Have to disagree with you on that one I'm afraid.  The worst part is waiting for the results of the biopsy!

Welcome aboard the good ship Gleevec.

All the best

Phil

[Susan61]

Hi Michael:  Hope your feeling better as time has passed, and  you have taken more of your Gleevec.  The BMB subject pops up every once in awhile, because each doctor handles it differently.  I can remember my first one being very painful, then my doctor started to give me Lidocaine, Versed, and Demerol.  I was semi-conscious, and it was over before I knew it.  My time in New York doing the clinical trial, they did my BMB in the doctors office.  He would not give me anything but Lidocaine, and that was the worst experience I ever had.  IT had something to do with the fact that because I was not paying for it, they would not pick-up the expense of doing it in the hospital under sedation.  Things have changed so much since the early 2000's.  You have to ask for something when you feel you need it.  Nobody should suffer through a BMB anymore.

Susan

[Goldfinger]

I am going to have my bone biopsy the first week of June. From reading these posts, it doesn't sound like something I would wish on  my worst enemy.