The Leukemia & Lymphoma Society Community : Discussion List - Chronic Myelogenous Leukemia

Switching to Tasigna has been a good thing ... so far!

communityreply@lls.org — Thu, 23 May 2013 03:18:22 GMT

Hi all,

After 2 1/2 years on 400 mg Gleevec (and reaching PCRU). The bone pain was significantly increasing in frequency and intensity. My oncologists would not agree to lower the dosage of Gleevec but did agree to switch me to Tasigna a month ago. The side effects I am experiencing on the Tasigna are much less. The bone pain has been negligible and no GI or nausea issues. The first 10 days or so felt like the flu and then I had a rash and itching which has dissipated. I wish I had made the change earlier!

Nat

Bone marrow test results

communityreply@lls.org — Wed, 22 May 2013 22:14:32 GMT

Hi folks,

I haven't been on this board in a while as have been getting pretty used to the meds and I think have been doing ok as things have calmed down a lot and I'm back to work so don't have as much time to think about it all!

I got my PCR results, it was 144% at diagnosis in Nov. I started the medication and it went down to 118% in Jan and then at last result I got 0.9% at the end of feb (3 months on medication.) I was told I wouldn't need another bone marrow test as my marrow was clear- yippee!

So roll on yest when my friend who is a nurse at the hosp sent me the final report from my bone marrow. It says;

Blast cells-0 Promyelocytes-0, Myelocytes-7, Metamyelocytes-7, Polymorphs-39, Basophils-0, Eosinophils-3, Lymphoctes-14, Monoblasts/Promonocytes-0, Maturing Monocytes-2, Plasma cells 0, Erythroblasts-27, M:E Ratio 3:1

Blood film; Red cell anisocytosis. Platelet anisocytosis with occasional giant platelets seen.

Marrow report; Bone marrows smears received with hypocellular fragments and trails for age. Megakaryocytes appear increased and are mostly small with hypolobated nuclei. Prominent sea-blue histiocytes. The myeloid and erythroid series are represented at all stages of maturation. No abnormal infiltrates seen.

Iron stain; absence of stainable iron in granules and precursors.

Comment: tri lineage haematopoeisis. Consistent with morphological remission in cml.

Ok so then I started googling and didn't like what I read about the sea blue histiocytes being a sign of MDS? Also didn't like to hear that my red blood cells were looking funny either. Anyone any idea am I freaking out unnecessarily and this is normal for cml people or should I be a bit worried about the above showing some more abnormalities in my marrow besides cml.

Would appreciate your opinions thank you and hope you are all doing well and coping well with your cml.

Calalily

So frustrated - #$^@&'ing PCR tests

communityreply@lls.org — Mon, 20 May 2013 15:32:11 GMT

Just got back from Onc and received ambiguous news on my latest test results. Trying to keep my head clear but really frustrated.

Since I moved to 50mg of Sprycel I have been doing monthly PCR. After last result I decided to stop calling for results, I figured I would just see Dr in a month and if anything happened they would call me (note for future reference - they won't). When Dr came in I was told blood counts were good, we discussed side effects, which have been manageable although certainly still there. I asked about PCR and told "still negative". As I was leaving I asked for a copy of the test results at front desk and they printed and gave me results from March, I explained that I wanted results from April. They initially told me there weren't any but kept looking. After about 10 minutes they found them and handed them to me, the first line says

Test Results: POSITIVE: BCR-ABL1 transcripts were detected.

It then went on to report a number of BCR-ABL1 ratio: 0.036%!

I asked to see the doctor again. He apologized and said he had not seen this report that he saw the results in the folder from March that showed negative. He read the report and said there were a few things I needed to understand. He said this was not from the same lab the last few reports were from. He said they switched to their own lab and we are now back to non-IS results. The notes on the report state that Based on an initial comparison with IS results this result should be "around 0.01% IS or lower - or over 4 log reduction. Because of differences in lab results this should not be considered an increase in BCR-ABL"

I know my post will get censored if use bad language but I am so (fill in the blank) frustrated right now.

I hate this (fill in the blank) PCR test.

So now I have to sit here and wonder if anything has changed at all or not. Is 50mg of Sprycel not effective or am I where I always was but this test is more sensitive? Could it be a false positive? I hate not having IS comparison, they seemed to do a rough estimate but before I was IS negative now I'm supposedly "around" IS .01% If I compare these numbers to my old lab results from a different lab that were non-IS it looks like I have relapsed. I am not going to let myself go there given the notations and the fact I know you can't compare, but I hate this damn test. Now I need to wait two weeks to get the results of today's draw and see if the number goes up down or side ways. Dr said he is not going to change anything yet, I should stay at 50mg and wait and see. Grrrr I want to smash something right now.

To make my stress level even more intense they also drew blood for my PSA today. It has been 6 months since the last one and if this test result comes back elevated then good chance I have prostate cancer and have to go for biopsy. Waiting on these test results is going to make me insane.

I am so sick of being sick.

Oh yeah and after Dr appt I got back in my car and my car stereo died. The slight enjoyment I get from listening to the radio as a distraction while I'm in my car is gone.

"Reality continues to ruin my life"

-Bill Watterson

PCR Insurance Coverage

communityreply@lls.org — Thu, 09 May 2013 23:15:34 GMT

So, I had my second PCR of the year, and this time BCBS covered it. After the first one wasn't covered and my appeal denied, my onc sent a page to them from the National Comprehensive Cancer Network guidelines and highlighted the section entitled "Quantitative RT-PCR (QPCR) using IS." Today I found out that they covered the latest PCR. I still haven't heard anything about the one that I appealed. I'll keep you apprised.

Circumin : Who is using it and which TKI are you on?

communityreply@lls.org — Fri, 10 May 2013 14:49:31 GMT

Hi,

Ok, I'm ready to take the circumin supplement plunge like some others have done, but I wanted to see how widespread this is among our board community. Besides the potential benefits for beating down CML (see @Scuba 's journey), I'm looking to its natural anti-inflammatory properties to help deal with my surgically-repaired left ankle, which still feels pretty crummy and aches/swells from time to time.

If you'd be willing to share on this thread:

Which TKI you're taking it with (I'm on Gleevec 400mg)
Recommended brand & daily dosage (I know @Scuba takes 8g/daily of a high absorption version ... could be a little pricey, but also wonder what others are taking as well)
What else you're taking with Circumin to promote absorption (if anything)
Are you taking it with your TKI dose, or at a different time of day?

Thanks everyone ... would appreciate any and all feedback ...

Dan

Tasigna Drug Interactions

communityreply@lls.org — Tue, 21 May 2013 21:30:22 GMT

As far as I know this isn't an issue, but I don't want to inadvertently mess up something. Is anyone aware of a problem with taking either vitamin C or Sudafed with Tasigna?

How many of us smoked cigarettes?

communityreply@lls.org — Sun, 19 May 2013 15:00:41 GMT

I realize there isn't a direct correlation between smoking and CML but I am curious how many of us have smoked?

I did for most of my adult life until two years before my CML dx. I've been smoke free for over seven years.

Over-Exercising and consequences?

communityreply@lls.org — Sun, 12 May 2013 19:24:14 GMT

Hi everyone, hopefully someone can help me understand my situation. I am the main caregiver and support provider for my friend who was diagnosed with CML in November 2012. She went through a round a chemo and oral treatment and the cancer "got worse". She doesn't say much to me because she doesn't want me to worry and isn't ready to talk about everything openly yet. I try not to push her but I would like some answers if possible.

While she was recovering she went to the gym and over did things. She ended up passing out and was hospitalized overnight. I can't remember if it was announced prior to or after this episode that the sickness had worsened, but I know that she was scheduled to have a second wave of chemo treatment. This time the doctor instructed that she stay at a facility for 2 weeks under supervision. The chemo had "complications" and she now needs a bone marrow transplant.

That's the background. Now for my confusion. I have read all the positive information about CML, the new oral treatments since 2001. Lots of positive things. It seems like this can be treated well and long lives can be lived. Great news! With that said, here are my questions. Keep in mind I don't know what stage she is currently in or which stage she was diagnosed in, but my understanding is that most are diagnosed in the chronic stage.

If the oral treatments are so effective, why would she enter chemo so quickly into the diagnosis? Chemo was about 3 months after diagnosis.

What effects would overdoing it at the gym have on her health? How bad? :-/

During her second round of chemo there were "complications". I don't know what they are, but now she is scheduled to have a bone marrow transplant. A donor has been found. What could have happened to go from chemo to a transplant?

How much different is the prognosis for a transplant compared to the success stories of an orally treated CML prognosis?

Thanks for your help!!

Shortness of breath

communityreply@lls.org — Sun, 19 May 2013 20:36:50 GMT

Hi there, hope everyone is doing ok.

Almost three weeks ago I flew to Europe to visit my family, after one week of staying overthere one night all of the sudden I've experienced shortenss of breath while laying down in my bed,

I have never had any shortness of breath before, I got very scared and the same night they rushed me to an emergency room where they did an EKG, blood pressure and oxygen level, everything was ok. I was told it was just an anexiety since I was stressing out a lot ( my dad is in the hospital etc).

I''m back home now since Tuesday and almost every night while I'm laying down in my bed trying to sleep I have a feeling that my heart has stopped working and some sort of shortness of breath where I need to eaither turn or move to start breathing again..when sitting and walking I feel ok. I already saw my cardiologist And He suggested for me to wear a holter monitor for 48 hours to check on my heart, I wore the same monitor like two years ago that was right after my CML dx due to my various complaints of dizzy spills and feelings of irregular heart beats, at that time all was ok. I've also had two Echocardiograms of my heart since my dx and both of them were normal too.

I'm very worried since I have never experienced any shortness of breath before. I'm taking 600 mg Tasigna for 20 months now and that is the only medicine I ever took for my CML.

My PCR is still detectable but my doctor said it is very low and that I'm in MMR. Btw I'm 38.

Any input, opinions or suggestion would be greatly appreciated.

Thanks so much!!

Dina

Blog from someone who has had CML for 10 years

communityreply@lls.org — Thu, 16 May 2013 01:07:02 GMT

Interesting BLOG http://marycrocco.wordpress.com/

Am I the only one having trouble logging in?

communityreply@lls.org — Thu, 09 May 2013 01:49:27 GMT

I have to try and try and then try again to log into this site. Now I can't reply to my own post.