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Hello all I was diagnosed with CML on Oct 17th after a week of pure fear thinking I had Mylefibrosis (my doctor 1st guess at what I had after a dry bone marrow biopsy) I thank God I dont have that .... I'm 23 and active duty in the air force(and they're not medically discharging me.. that's good right?)

I'm currently on Tasigna and I'm responding very well.. my haematologist sent me to a specialist in Colorado because she thought I was "unique" for a cml patient .... long story short the specialist said I'm a normal case and that the Tasigna will reverse my bone scarring and I'll have a normal life... great news . But I need help with the mental battle.... ANY TIPS !?

Hello. My situation is quite similar... The diagnose was confirmed on 25th Oct, although I was suspicious about it much earlier. I am a doctor - pediatritian, 29. It was accidental finding in my blood test taken for other reason, as usual in this type of leukemia... It was psychically really exhausting when my CBC came from lab and I started to think about it... Fortunatelly I have very supportive boyfriend, who helped me a lot. We have been together nearly 10 years, in fact started to think about having a baby after doing my attestation exam in spring... I am now a week on imatinib and it is not as bad as I expected, but it is still too early to say... What can I say to support you... this is really rare ilness, really rare in our age, fortunately it is well treatable these days and you are not alone. Your doctor maybe offer you antidepressants, however in my case physical activity works much better (maybe not the best idea at the beginning of treatment as you do not knoe your platelet levels etc.). I love travelling, so I am planning our next holiday, so I think about Costarica, not CML. I should learn fr my exam, but I still do not have any enthusiasm for it. But mental work is good. And keep smiling as much as you can - that really helps. Fingers crossed!

Hi

Welcome to the club none of us wanted to join.

Its very early days and normal for you to have lots of questions and worries. The early days are very hard mentally and emotionally. It does get easier. I am only 8months in myself and I’ve had good months and bad months. As long as you respond and your symptoms are bearable you’ll be fine. It can take sometime for symptoms to appear some in the early days and others a bit later.

We are told that you’ll live a normal full life as long as you take the meds and get the responses needed. For me it’s more of a mental battle than a physical one at present. You’ll find some coping mechanism’s as you go.

All the best with your treatment. Tasigna is a great drug FYI. So far normal bloods for me and my last PCR was where I needed to be.

Alex

Hello, I am three months ahead of you. I too had those dreadful few weeks when I was unsure of my results. I was merely told that I had a "serious blood disorder". After much Googling based upon my white blood count and other information, I self-diagnosed CML.

In the first few weeks of taking imatinib, I experienced a number of side effects. The side effects subsided very quickly and now I have none. For the first time in a decade, I have a perfect white blood cell count on all 20 measures. I have managed not to miss a day's work. My 12-week Ph-positive and BCR-ABL tests look very promising. For all intents and purposes, everything is looking positive.

From much reading, I know that CML is not an easy ride for many people who do complain about the many side effects of taking the medication. But I have been reassured that a normal life expectancy is very likely.

Hello, This is a great site for support. We do know and feel what you are going through. I was diagnosed around 3 months ago. Tolerating the sprycel fairly well. I find staying active and exercise helps a lot. I also try to focus on healthy eating and hydration. Not always easy. I try hard to focus on the positive. Not always easy either. All takes some work. The Vitamin D level I think is also very important. As time goes on the mental thing does get easier. Hang in. We are all here for you.

BrittBratt95 wrote,

"But I need help with the mental battle.... ANY TIPS !?"

Yes,

First - you will never die from CML - ever. You will die from something else - hopefully old age.

Second - Read First.

Key to managing your CML is to adopt a nutrition approach which favors immune health (vitamin D being very important). You want your body to assist the TKI in its job. Over time you will very likely achieve a very deep remission such that you may be able to stop taking Tasigna. Your goal is to manage your disease downward and then to lower dose. You want to be taking the lowest dose possible that is effective. More is not necessarily better when taking TKI's. Everyone is unique and if you respond very fast you likely won't need to be taking a high dose. Lowering dose while maintaining response is the single best way to lower and mostly eliminate side effects.

If you find taking Tasigna has side effects that bother you significantly - you can switch drugs (i.e. Sprycel) which may work just as well and even on lower dose. The idea here is to be willing to maximize your remission potential and lifestyle. Over time, you won't realize you have CML except when reminded to get a PCR test every 3 months.

In my case, I take 20 mg Sprycel (1/5th normal dose) and I am PCRU ("undetected") and my PCR tests are every six months. Soon I will stop taking Sprycel altogether.

Did I mention you will never die from CML.

Scuba, I always love your responses. You always help me even tho it was addressed for someone else!!!!😊

We are all scared int he beginning and I'm pretty sure we are all scared leading up to each and every PCR test, except Scuba maybe surprise. I am now 26 months post Dx and on 150mg/day Tasigna following 3 successive dose reductions in months 3 - 9 of treatment due to multiple nasty side effects.  I was lucky enough to have very rapid response to Tasigna thus allowing my onc to agree to the dose reductions - I was MMR in less than 90 days and have been at <.003% since April 2017.  Like Scuba, I now have my PCR test every 6 months.

The mental part is tough, but it gets better as you slowly realize that this disease is manageable and that you can lead an almost normal life. What helped me was all the stuff Scuba mentioned plus never stopping my cardio and weight workouts, despite feeling like utter crap many many days.  Because of all the dose reductions, I was getting PCR's done every 6 weeks for almost a year and waiting for those was always tough, so my wife and I would plan a fun day on the day we knew we would get the result in an effort to keep my mind otherwise occupied.  I listened to relaxation tapes and spent lots of time on this and other support groups which not only increased my knowledge significantly but also gave me a place to share and vent.

It'll get better.  We are a very lucky subgroup of a larger group of very unlucky people with blood cancer.  I do therapy visits to Mayo Clinic with my dog MJ once a week and we go to the radiation oncology and chemotherapy departments.  Yesterday, MJ and I met a young man in his 30's with what is now terminal lymphoma.  He had been through almost every therapy possible, including CAR-t at Moffitt in Tampa and it keeps coming back in a more aggressive form.  He has been advised to go to hospice, but he refuses as that would be tantamount to giving up hope.  I left that encounter feeling incredible grateful that I have CML.

So hang in there, don't miss any doses, follow the fasting rules for Tasigna religiously, exercise vigorously, focus on good nutrition, and do anything and everything else possible to keep your immune system healthy.  You have a long life ahead of you my friend - enjoy it. The mental part will get easier.