First FISH results

Hi Stacey,

Most new patients at diagnosis have FISH results of 100% (200 out of 200 cells show the bcr-abl oncogene). So .... his CML was caught "early".

The medieval torture biopsy practice is our right of passage. All patients have to go through or else they are not allowed to live. Actually - your husband is going to be fine. I have had six or seven of these procedures - I've lost count. I don't have them anymore fortunately.

You will face many more psychological ups in downs this first year than likely actual health risk. I don't want to play down the 'seriousness' of CML - it is serious, but the reality is we have several drugs to treat it and treat it very successfully. CML, was once a death sentence, is now survivable by over 95% of the patients who are today diagnosed - and the other 5% had big problems usually not related to their CML.

Key for long term success and 'happiness' is to find the right drug at the right dose along with a few lifestyle changes (which we all needed to do anyway) to maximize success. Most patients are started on Gleevec. There are more potent drugs, but Gleevec is the standard because it has been around the longest and is coming off patent (becoming cheaper to prescribe). I take 20 mg Sprycel and my PCR is "undetected". Am I cured? Who knows - I'll always have to be tested. So for me, I live with CML.

Read the NCCN guidelines for CML:

https://www.nccn.org/patients/guidelines/cml/files/assets/common/downloa...

It is a good reference on what path your husband will be following.

Initial goal is to get symptom relief which is his WBC's and spleen, etc. all returning to normal. That will happen pretty quickly. Then it is a years long process to get his bcr-abl FISH counts down to zero and then monitor bcr-abl molecules with PCR testing to get that level down to < 0.01%. CML'ers fret over every little digit to the right of the decimal point. It's what we do. Reality is any value less than 0.01% is functionally equivalent to zero. Your goal is to get to 0.1%. Once there and hold it - long term prognosis is near 100%. Getting there can be a roller coaster. Managing side effects is another issue. Many patients change drugs just to change the side effects profile as well as change if the drug isn't impacting the CML hard enough.

Keep in mind - FISH is looking at actual cells under the microscope. Once they are no longer there - it doesn't mean he's cured or that there are no CML cells. Just that under the microscope we don't see any among the millions of healthy cells which shows treatment is working. Those "hidden" cells are producing bcr-abl protein which is the culprit causing the cancer (i.e. explosive WBC growth). They can measure this protein and compare it to a standard and that  is how we get PCR's. PCR is a log scale which means every decimal place drop is a HUGE drop in bcr-abl protein and a strong indicator of progression free survival. PCR's will become important once his FISH drops to zero.

Hope this is useful. Keep in mind - CML will not kill your husband. With a bit of vigilance, his life will return to normal.

By the way - get your vitamin D level checked and take vitamin D3 supplements to raise it to 60 ng/ml minimum if below that level. Vitamin D helps our immune system fight CML (and other cancers). Some take Curucmin which also fights CML - but you need to take quite a bit to be effective. Going on a keto diet - which starves cancer of sugar is another approach. One paper showed that low/zero carb diet stops leukemia in its tracks. None of these are cures - just bumps to slow down the disease so our drug (Gleevec in your case) is more effective.

Thank you, scuba. It must have taken you some time to write that eloquent response. I am visiting the doctor for the first time tomorrow following my first "mediaeval torture". I already have a number of questions to ask but your guidance here is most helpful. Regards, Stephen.

I listened to the Audible book The Philidelphia Chromosome it is amazing how they figured this out and how lucky the newly diagnosed wont suffer as much as those before