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New to CML / Intro and Questions

Hello all, I wanted to join and get plugged in to the group. I was diagnosed on 12/17.  My original bloodwork that came back with high white blood cell counts was at the end of November when I went in for bloodwork for my annual physical.  I am a firefighter in central Texas and the department requires them yearly to stay fit for duty.  After a few weeks, I completed the bone marrow biopsy and additional bloodwork.  This lead the the diagnosis in mid December. 

I started Sprycel on January 1st.  I have found this forum to be one of the best (if not, the best) on questions and answers with explications.  As a result to some of the information I read here, I decided to take Sprycel in the evening.  I feel it has been beneficial in making it through the headaches.  I am 43 so I expected that the side effects wouldn’t be bad.  I have had headaches, fatigue, and puffiness around my eyes.  I am not so sure if this is from the medication as it could be from the lack of sleep over the past few days. 

I have read many of Scuba’s posts on fasting.  A few details about myself and the changes I have made since late November... I quit caffeine, I stopped drinking (drank about a 12 pack a week), I have gone 90% whole foods plant based.  I have done plant based before but never had a reason to stick to it. I have fasted before as well.  My longest fast was water only for 17 days.  Most people ask me if water only included vitamins, tea or black coffee.  In my case, when I fast, it is actually water only.  I have done juice fasts as well which were around a week or so. 

All this leads me to some questions which I hope the community can help with.  Has anyone come across studies related to CML/fasting or CML/supplements that can assist with TKI treatment? 

I am thankful to be part of the group although it is about a disease I certainly didn’t expect.  The past 6 weeks have been a roller coaster of emotions and thoughts.  That being said, I hit things head on, eyes open and square shoulders.  I am an all or nothing, kill or be killed personality.  It’s just the way I was built.  I hope I have something to offer the group as my journey unfolds. 

Thanks again to those that have set this site up and let me be a part of those who are here.

Hi ,

It is a tough one when you have been diagnosed with CML and especially in your situation when you are still medically classified as being young.The first six months are a challenge as you have to deal with the side effects of the medication and the physolcological  effects/mental health issues of your situation.

From what I have read Dasatinib might have side effects of headaches and possible pleural effusions (build up of fluid in the lungs ) and the data suggests 1 in 5 experience this.From this forum many suggest that the dose of the drug is important ;at the highest level it could be quite toxic say at 100 mg per day so a lower dose might be just as effective .So this might be useful to mention to your specialist doctor-so basically go in at a maximum level then reduce the dose if possible;posts on this forum would refer to this issue.

The side effects -Tkis like Dasatinib have side effects like eyelid swelling or odema and might never go away;you wake up in the morning and look in the mirror and it is as if you have been in a boxing match.Old tea bags might help or a plant based eye wash might be helpful.

I dont have a comment on fasting but on on diet I am in favour of cutting out animal fats and any smoked or cured foods that have a potential carcinogenic effect.I have used lots of the plant based alternatives and some are excellent but others taste like cardboard-I feel really good on these though.

The verdict is out on drinking as there is no definitive evidence that there benefits to abstain from alcohol when taking tkis .

I have looked at many publications about "Life Style After Cancer" and it is not conclusive especially on use of supplements. My view is that diet might be beneficial like lots of omega 3 and fish plus nuts and seeds; at the opposite the  overuse of supplements might be potentially harmful rather than beneficial. It is a difficult one.

On the exercise no doubt you have physical requirements for you job as a firefighter .My experience is that at mid 70 s the physical thing with of lots of keep fit activities is so important still and might be an anti cancer strategy.

I wish you well

John

Central Texas - what a beautiful place  - I know it well.

What is your current bcr-abl level (PCR)?

So there is some unknown on my part. I will explain. I have two BCR-ABL1 tests.

One is Major RT-qPCR @ 40.07%

One is Minor PT- PCT @ 0.0390%

I am assuming this is the same number in different measurements. 

I also do not know where this falls on the scale of high or low. Still pretty new at all of this. Feedback is certainly welcome. 

Hi Firefighter,  Welcome to the forum!

The two results you gave are not the same.  They are testing for two variants of the BCR-ABL1 protein.

Just to confuse the issue, the major form result can be presented in different ways.  The raw score can be converted to an international standard (IS).

For example, my original PCR test for BCR-ABL1 gave these results: major - p210 transcript b3a2 and b2a2 = 118.683% IS (88.57% raw score), minor - p190 transcript e1a2 = 0.01%

 

Happy New Year,

Kirk

How do my initial BCR-ABL1 numbers fall in the known ranges?   
 

Are initial values any indication of reaching TFR at some point?

Happy New Year to you as well!

Danner

What is the date of the results you posted? and is there a trend from 2017.

BCR-ABL is a measure of the active cancer protein at the molecular level. Because it is determined based on RNA amplification (just like Covid I might add), the results have to be calculated against a standard. This is why some people can have > 100% bcr-abl and some less. At diagnosis my level was at 155% bcr-abl.

Practically speaking, however, tracking trend downward from whatever your starting point is informative. Your goal is for your bcr-abl to measure less than 1% which is defined as cytogenetic remission. And then powers of 10 (log) drop from there ..... 0.1 ... 0.01. Once you achieve a level of 0.01%, you are  at the limit of the tests precision and accuracy. Under the microscope there is no evidence of bcr-abl cells much below 1% PCR.

Sorry for the confusion. That is my first test results. They are from 12/4/20.  I was diagnosed 3 weeks ago on 12/17/20.  I have been on Sprycel for 5 days.  This is the first and only treatment I have received. 

Hi Danner,

It seems that your CML was caught fairly early and that's a good thing.  Your diagnostic scores are very typical.  There are some diagnostic scoring systems (Sokal, Eutos) that you may want to ask your doctor about.

TFR is still fairly rare for most of us but treatments improve as the years go by.  Hopefully more of us will be able to discontinue treatment as the years go by.

Kirk

Got it.

What you should have is a FISH test which counts actual CML cells under the microscope. This test is more useful than PCR (bcr-abl) at the beginning of CML treatment.

The pathologist will count how many CML cells are visible out of 200 (using a dye specific to the CML protein) and that gives a percentage count up to 100%. Most of us are diagnosed at 100% meaning all cells observed are CML cells. As treatment begins this count will drop and should ultimately go to zero percent. Zero percent is cytogenetic remission and is a significant milestone and single most important indicator of progression free survival. Once you achieve zero percent FISH, then PCR takes over to track residual disease. Once you achieve cytogenetic remission survival is over 95% (you will die of something else, not CML).

In addition, you should also note your neutrophil, RBC (red blood) and blast cells counts. Sprycel is potent at 100 mg and can cause suppression of blood cells, especially neutrophils. You should have a CBC blood test weekly until your blood counts stabilize. Blast cells can be an indicator of progression. Most people have zero to a few percent of blast cells normally (ideal is zero). In CML it is leukemic blast cells which kills (blast crisis). Keeping blast cells near zero keeps CML in the chronic phase. When I was diagnosed my blast cell level was around 10%. Now it's zero.

Hi

Like a number of people on this forum I made a TFR attempt after a year on half dose of TKI (in my case imatinib). Before that I was on 400 mg for over 10 years. MY BCR-ABL drifted back up after 17 months; I am back on 400mg and am back at 0.000%

It is WAY too early for you to start thinking about potential TFR; getting to FISH/BCR-ABL below 10%, then below 1%, then 0.1% are the current things to monitor. It  may take a while to get there - it took me 20 months to get below 0.1%, but the indicative target of 12 months for that wasn't in place back then. There are rabbits and tortoises on how long it takes to get to MMR. I was a tortoise; the fact that you are comparatively young and fit does not mean you are more likely to be a hare. The important things are to take the meds very regularly, which gives you the best chance to keep the trends going the right way.

Most specialists are currently recommending at least 5 years of TKI treatment with stable IS scores well below 0.1% before people think about TFR. Reduction of dose sometimes happens before that, especially for those who have serous side effects.

Many many people live normal active lives while taking their TKIs. My consultant finds quite a few patients who could consider a TFR attempt but don't want to because their meds don't interfere significantly with their lives, and they don't want to give the CML a chance to come back. (Note that on the biggest TFR trial in UK called Destiny those who lost their remission all regained it when they went back on the meds.)

One other thing I would suggest is to get your vitamin D level checked and supplement that if you are not at the high end of the normal range. You may get enough sun in Tecas but worth a blood test. 

These are my counts on the FISH.  This was the first day I saw my hematologist oncologist.  There were some she did right then, I believe it was a smear test.  Then the rest were sent to the lab.  I remember her telling me my Blasts were at .5% and this was good considering.  Below was copied from my labs amongst many many other tests and numbers,

200 cells...........Absolute No Neuts 64.0% 72.8 Bands+left-shifted grans 20.5% 23.3 Blasts 0.5% 0.6 Lymphs 7.0% 8.0 Monos 2.5% 2.8 Eos 2.5% 2.8 Baso 3.0% 2.4

RBC 4.28

Those results looks like a blood count differential.  The FISH score for BCR-ABL1 will also be a percent result, but it's a stand alone result.  If you can get a full copy of the FISH report, it should be more informative to you.  If I remember correctly, my report included a photograph of the cells under the microscope.