12 replies to this topic

[mn911girl]

Hi All!!! I was just diagnosed with CML on Wednesday.  It's been a whirlwind two weeks, after I went to give platelets (like I regularly do) and they said they had to stop as my WBC was abnormally high. They recommended I see my primary care physician.  So, after making an appt, having more blood tests, meeting with my PCP, then meeting with the oncologist, having a bone marrow biopsy, they said it was CML.  My first WBC was 51, then the day before my diagnosis, it had gone up to 71.  I will be starting Gleevec on Sunday.  I am very active, running, crossfit, etc.. I don't plan on changing anything... I don't have any symptoms of CML, at all... In the past three weeks, I've had six PR's (personal records) at crossfit....which is going a long ways to keep me sane, and strong thru this diagnosis.... =)

[Marnie]

Welcome to the forum!  Sorry that you had to join our club, but you will find that this is a great place to get information and support.  You have the right attitude. . .I've maintained my very active lifestyle since diagnosis 6 years ago, so you are definitely in the right mindset.  Good luck and welcome!

 

Marnie

[Yougotafriend]

Welcome you will learn a lot from this form I know I have
I suggest you Google trey's blog it was a great help to me he's got a lot of good information in it.
I was diagnosed in June 2014 I've been on Gleevec ever since doing well. I am very active as you are and was competing in fencing tournaments and traveling when I went for my yearly check up and found that my Basso count was high 6% an it's not supposed to be greater than three. All other counts were normal.
I first start taking Gleevec I had a little stomach issue with it bothering my stomach started splitting the dose between breakfast an a half at lunch like Trey suggested in his blog. That took care of my stomach issue. Only thing I really have that bothers me is muscle cramps specially when I over exercise. I've been taking some magnesium and potassium which helps. I recently started supplementing with Gultamine seems to help but I just start this.
Anyway life is good I'm sure yours will be too take care.

[mariebow]

  Sorry that you are now in this club, but just take your meds,keep up with your check ups,exercise is great, and I hope you keep your energy level, some of us have occassional bouts with different degrees  of fatigue.

[soundoff]

Glad you found your way here. Don't let the CML roller coaster get the best of you. Keep on keeping on

[hannibellemo]

Welcome! You sound (and look) like one of my dear friends who is an "elite athlete". I'm not and I used to tell her she only hung around with me for self-discipline!  

 

Glad you found this group and I'm sure with your attitude you'll do great!

[snowboots]

mn911girl, I remember clearly how scary this diagnosis is. I was diagnosed in Feb. 2015 but have been doing very well on Gleevec with a few manageable side effects. I too was a frequent blood donor (over 23 gallons of whole blood, yes gallons) in my lifetime. No telling if that had any bearing on the CML, but I do miss donating now. Keep in touch on this forum - it has been SO helpful to me - don't know what I would have done without it. We are so fortunate to have access to the drugs that treat this disease. I too had no "symptoms", was healthy at diagnosis and have been able to stay very active throughout treatment so don't let that worry you too much. Keep to your regular workout schedule as much as you can. You are starting out already healthy so you are ahead of the game. Good luck and keep us posted - we'll help you get through those first scary months!

[MarCap73]

Hi All.  Happy New Year.  I was recently diagnosed too.  I went for a routine physical with no symptoms.  My primary care ordered routine blood work.  I had not even gotten home and he was calling me on the phone and wanted me to go a hospital ER immediately for a second blood test.  My primary care doc sent an email to the ER, told them I was coming and what to test for.  A few hours later the ER doc confirmed that I had an elevated white blood cell count and that they were consulting with the on-call hematologist.  They determined that it was not acute and I was cleared to go home for the night and the following morning the hematology / oncology department would be calling me to bring me in the next day.  More blood tests, a bone marrow biopsy, and here I am...still trying to make sense of it all.

 

As I have browsed this forum I have seen tons of acronyms and terms.  Does anyone know if there is a 'dictionary' somewhere?  Or these terms just things you get used to hearing?  

[CML2012]

CML

CML starts in your genes. Each human cell contains structures called chromosomes, which carry the genes (DNA). Genes are the codes that instruct cells to produce certain proteins.
For some reason (which researchers haven't yet pinpointed), in CML, a section of chromosome 9 switches places with a section of chromosome 22. The combination produces a new chromosome, called the Philadelphia chromosome (named after the city where it was discovered).
The Philadelphia chromosome creates a new gene, called BCR-ABL. This gene instructs blood cells to produce a protein called tyrosine kinase.
Tyrosine kinase causes your body to make too many white blood cells. These white blood cells are immature. They don't work as well as normal white blood cells. As a result, your body can't fight infection as well as it used to. The extra abnormal white blood cells leave less room for healthy white blood cells, red blood cells, and platelets.

Here's what each CML response means:
A complete hematologic response means your blood cell count has returned to normal, and tests don't show any immature white blood cells. Also, your spleen has returned to a normal size if it was enlarged.
A complete cytogenetic response means that no cells with the Philadelphia chromosome can be found in your blood or bone marrow.
A complete molecular response means the PCR test can't detect any of the bcr-abl gene in your blood. Most people with CML don't have a complete molecular response. They still have a tiny amount of the bcr-abl gene in their blood. This is called a major molecular response. Doctors still consider this to be an excellent response.

Unlike with other cancers, a full response, or "remission" doesn't mean that you're cured and can stop treatment. Even if tests can't find any trace of CML in your cells, the disease can relapse.

Polymerase chain reaction (PCR) looks for the BCR-ABL cancer gene in your cells.

Fluorescence in situ hybridization (FISH) to measure the number of cells containing the Philadelphia chromosome

http://www.webmd.com...d-to-know-first
http://www.webmd.com...l-chronic-phase

[Buzzm1]

Hi All.  Happy New Year.  I was recently diagnosed too.  I went for a routine physical with no symptoms.  My primary care ordered routine blood work.  I had not even gotten home and he was calling me on the phone and wanted me to go a hospital ER immediately for a second blood test.  My primary care doc sent an email to the ER, told them I was coming and what to test for.  A few hours later the ER doc confirmed that I had an elevated white blood cell count and that they were consulting with the on-call hematologist.  They determined that it was not acute and I was cleared to go home for the night and the following morning the hematology / oncology department would be calling me to bring me in the next day.  More blood tests, a bone marrow biopsy, and here I am...still trying to make sense of it all.

 

As I have browsed this forum I have seen tons of acronyms and terms.  Does anyone know if there is a 'dictionary' somewhere?  Or these terms just things you get used to hearing?  

Hi MarCap73, welcome to the forum; one of these days, perhaps there will be a sticky as the first thread, that includes, among everything else, a linked index with CML Acronyms ... like the rest of us following this forum, you will soon become knowledgeable.  Which TKI (tyrosine kinase inhibitor) were you prescribed and when did you start taking it?  In the meantime try not to worry, as has been said by many others, if you have to get cancer, you would want it to be Chronic Myeloid Leukemia (CML), which is controllable, in almost all cases, with TKI's.

 

if you have access to your initial test results, and want to post them, Trey is quite adept at translating them into layman's terms.  After three months you will have a Polymerase Chain Reaction (PCR) test which looks for the percentage of BCR-ABL cancer cells remaining after continued TKI treatment.  The first goal is to obtain a positive response to the TKI, indicated by a decreasing PCR percentage; and then successive tests with decreasing percentage, the ultimate goal is PCRU, the U indicating the leukemia cancer cells are Undetectable. 

 

Buzz

[MarCap73]

Buzz,  Thank you for the reply.  I am on Sprycel, started taking it November 10, 2015.  My side effects were very typical of what the literature says and what I have read here on these forums.  A lot of fatigue, muscle and joint pain, a little shortness of breath and "heavy" chest, and pretty severe headaches for a while, and a really itchy scalp.  My energy levels have started to come back up though I tire easily and most of the side effects have gone to the wayside or are a lot less severe.  My WBC count is starting to come down (from about 70K).  

 

I do have copies of my labs, though I am not sure which numbers would be "useful" for Trey?  My Onc (I learned that bit of lingo reading these forums) did indicate that in February she'd be having additional tests run.  I assume this could be the PCR if it's done after three months. 

 

I see there are a few different types of TKI drugs out there and many of "you" are on Gleevec and Tasigna.  Is typically a reason why my onc put me on Sprycel vs one of the other drugs?  I did read that many are put on Sprycel or Tasigna after using Gleevec with negative results or bad reactions to it.  I assume that one is not necessarily "better" than the others?  

[Buzzm1]

I see there are a few different types of TKI drugs out there and many of "you" are on Gleevec and Tasigna.  Is typically a reason why my onc put me on Sprycel vs one of the other drugs?  I did read that many are put on Sprycel or Tasigna after using Gleevec with negative results or bad reactions to it.  I assume that one is not necessarily "better" than the others?  

Gleevec, introduced in 2001 was the first breakthrough drug in treating CML.  Sprycel and Tasigna are second generation TKI's, with a somewhat higher efficacy, and higher toxicity.  For some of us it depends when we were first diagnosed as to which TKI we were started on.  In my case, in October, 2009, both Sprycel and Tasigna were quite new, and since there wasn't a lot of history on their use at the time, my Onc chose to put me on Gleevec which I responded well to.  Not everyone responds the same way to any of the drugs, or can tolerate the side-effects of any given TKI for one reason or another, thus they are switched to another TKI, or their dosage is lowered in an attempt to resolve the issue.  Bosulif and Iclusig are two more recent TKI's.

 

Glad to hear, that in your case, most of the initial side-effects of Sprycel have resolved themselves.  Tiring easily seems to be the one side-effect that remains a constant for most of us.  Learning to adjust our individual lives to the side-effects of TKI treatment is a required subject.  It's different for each of us.   

 

Buzz

[CML2012]

I am on Sprycel and it has done well for me..., undetectable 😊😊😊😊😊