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Newbie reasonnable doctor expectation?Glevec or Tasigna as first line treatment?

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New memeber of our very select club! I mean these are lottery oods ... 

I am 34, was admitted on april the 2nd at the hospital due to covid 19. Very early my doctors were worried about my wild blood panels and after two weeks figured out that I had something unrelated to covid and dismissed me with a couple of follow ups . Up to that point the only thing I knew I had was some sort of `blood disease`. During my last follow up my doctor dropped on my head that I had a blood cancer and when asked to elaborate she simply answered that it wasn't her speciality and that she couldn't tell me more. So I basically had to pull my records and find out that by an unapproved internal hospital test they found that I had CML withe blood cells at 46K.

Covid was a good thing  improved my projected quality of life. I would have probably been diagnosed in a few years simply because I haven't had a blood panel (except for ISTs) in 16 years, I was healthy as an ox, haven't deat with the flu in years, no allergies or intolerances, So what was the point right, young dumb me ! Had to wait 3 months to see my oncologist because non essential care was cancelled due to the pandemy.

Fast forward to two weeks earlier I had a biopsy with my new doctor. I arrive 15 mn late, got lost in the hospital.  He tells me before the procedure starts that the medication carries risks for the cardiovascular system and that I will get off the medication in a couple years and that it will never come back. With hindsight his messaging worries me, he didn't tell me that more than half the people relapse and had his eyes set on tasigna way before any genetic testing. Plus he never discussed my options.I felt rushed but put it on the fact that I got there late and he was probably a little annoyed. On august the 3rd, a week later, on a telephone appointement he tells me that the diagnosis is official, chronic phase, took him a whole 2mn, had my whole list of question ready, gave me short one word answers and couldn't hide his frustration. He called me at 12h05 and later found out that he ends his morning calls at noon. wich his why he was probably rushing. Made me feel terrible and eroded the little trust that I had in him. He's been a doctor for more than i've lived I don't doubt his competence but I question his methods.

I have been on tasigna for a couple of days. On the first I had nausea and dizziness and some cognitive weirdness,thank good on the second day it subsided. A few years of that would have been very trying. Now I have some water retention in the left leg and my right arm, nothing too bad as far as AEs. Manageable.

So two questions:

- After having read a few studies and understanding  them at a layman's level, I see that tasigna carries added risks. Just 21 months of intake will increase the risk of particular cardiovascular issues tenfold compared to gleevec after 76 months intake. I welcome the chance of discontinuing the medication for any amount of time.  I don't just want to live for the sake of it, I want some quality of life in my old age. Gleevec makes so much more sense even with side effects such as hair loss. So guys, I know they categorize us with sokal and we're all different, what would you do if you had a reset button? Should I accept the risk it carries since I probably don't fit the profile of their subject for the studies, I'm probably younger by decades with no comorbidity? I'm willing to continue provided that I can stop in a few years. But probably won't use Tasigna again If I relapse. What do you think? 

-I'm not a millionaire with limitless ressources, and I understand that the doctor has to take care of me and plenty others. Plus I have to have the same empathy for him that I expect for him, he's probably swamped with work. But something doesn't sit right. I feel like I shouldn't be lorded over since I alone will be living with the consequences. I'm in North America and doctors have a very different style that I find arrogant. What should I expect and not expect from my doctors?Are my expectations reasonable?

 

Thanks everyone for taking the time to read and/or share and helping me limit my mistake :)

 

Hi

Welcome to the club none of us asked to join. I'm in UK, so can't comment on the system stateside. There are US folks on here who can advise on that.

You'll find a lot of information under the About CML and Patient Info links at the top of the page. The fact that you are in chronic phase is good - it is likely that your CML will not impact your life expectancy.

It is not unusual for CML to be diagnosed by chance when people are having tests for something else. I wouldn't be surprised if that's the case for about half of us (I'm 63 by the way and was diagnosed when 50, and have been on this site on and off since then). I was on imatinib 400mg for 10 years, then a year on 200mg and had 17 months off treatment. Mt BCR- ABL started going back up a couple of months ago so I'm back on the 400mg. One of the things I would point out is that all the studies on treatment free remission show that chances of staying off the pills is better the longer you have been on them.

I've not got much info Nilotinib (Tasigna). Again there are others on here who know more than that.

Do you know either a FISH score or BCR-ABL %? The BCR-ABL is measured by a PCR test, which can be confusing.

Hope that's a useful start.

No idea about my FISH score , these are things I probably need to know. I have an appointement on the 25th i'll ask. The intent of my doctor is to get me off treatment within a couple of years (two to three) if I get mollecular remission. From what I read Nilotinib  reaches treatment milestones quicker than Imatinib.Thanks for the response. 

Everyone has different thoughts on it but I chose imatinib when I was diagnosed at 32.  My hematologist’s thoughts were to try an earlier generation less potent TKI since I’m younger and would most likely need to be on the drugs longer due to younger age at diagnosis.  There are no guarantees that treatment free remission will be successful and I wanted to wait until more evidence and success was noticed for TFR.  

I will say that I haven’t gotten lower than a log 3.7 reduction yet but it has steadily gone down the longer I’ve been on imatinib.  I figure slow and steady wins the race LOL and for me I find the symptoms quite manageable - a bit of chronic fatigue, and late night water retention.  I lost a bit of hair at the very beginning but nothing drastic and it’s grown back, just a bit thinner.  Time will tell whether I continue to get better log reductions, and eventually I may develop a resistance to imatinib but then I figure there will be other meds to choose from, rather than starting with the strongest.

I will say, start taking vitamin D - look for previous forum threads on here specifically from Scuba.  Taking vitamin D had done wonders for me since starting treatment.

I agree with you and your doctor, I feel like it is very shortsighted the risk are documented, confirmed and acknowledged by novartis. Why take the chance when other options are  readily available. I might switch doctors and stop my treatment, having a discussion with my present doctor probably won't go well. And I can't antagonize him he's the president of the oncologist's association of the province I reside in. No energy issues yet but  I'll look the forum for vitamin D  info and get on it tomorrow . AAAhh decisions ....

Thanks :)

Hi, I'm glad you found what I wrote useful. For your appointment on 25 August, there are templates on this site of the questions you need to ask your doctor - look under Patient Info/Templates. The more information you get the easier it is to rationalise what you have to deal with.

I'd also suggest you get a vitamin D level check before you start supplementing. I was thinking about supplementing to support my Treatment Free Remission (TFR) attempt, but a check showed I was at 90 ng/ml naturally, and you don't want to go above 100. Many people find they are below 50, and that when supplementing becomes a useful option. 

On the question of choice of TKI, if at diagnosis I had had the option of imatinib (Glivec) or nilotinib (Tasigna), and had known what I know now, I would have taken the imatinib option. Apart from the side effect issues I would have found the fasting before and after taking it a challenge, and one thing the data shows is that dose compliance (not missing doses) is one of the most important factors in achieving good levels of remission.

 

Hey there,

Yes welcome to the unlucky club none of us wanted to join haha.

Like you I was diagnosed in my 30's albeit 37 so a little later than yourself. Just turned 40 and still consider myself "Young". When I was diagnosed I was told this is an "old persons disease" which made me feel great. The longer I spend on this forum the more I see people being diagnosed at our age and even much much younger and of course those in later years, I think the median age is about 60 if I recall.

Anyways none of that really helps you but knowing how I was when finding out I had Cancer in my 30s made me really p**sed off. You will no doubt feel lots of emotions about it and some will stick for a while. Let yourself feel whatever it is that you are feeling and don't suppress any of it, I have cried and will no doubt cry many times again, emotionally and mentally this will mess you up if you let it. The body mends quickly but the mind will play a lot of catch up id say if you're anything like me.

I say this a lot but for most of us we are lucky in an unlucky situation because the treatment for CML is so good. It is unfortunately not for a small select of us and we must be mindful and remember those that this is no walk in the park by any means, even those that respond do have battles including myself. And the hard part is you really don't know what camp you are in for sometime until things start working, slowing, plateauing, working again etc etc.

Anyways once you have your BCR levels to less than 1% (CCYR)  by PCR test (these happen every 3-6 months) you are in a safe place. Most are diagnosed at around 100% but in reality that number can be anything. For instance my presenting PCR was 13% and I have seen others at 300% so this first figure doesn't really count (I am not sure why it doesn't count but thats what they say and what I have seen being on this forum).

I was diagnosed with a white blood count of 330 and platelets around 900 or so. So yeah my panels were really screwed. Also had massive weight loss and a rugby sized spleen. "Enormous" my consultant tells me.

The point of me telling you all this is to make you feel better about your situation, I think your wbc is high but it's nowhere what some of us where diagnosed with. The highest on this forum I have seen was 500! So you have been caught pretty early luckily for you which no doubt means you will respond pretty quickly.

I am on Tasigna and have been since diagnosis which is 28 months so far. I believe you should be started on Imatinib (Gleevec) as your obviously very early in your journey, and then should Imatinib not work you can switch to Tasigna or another 2nd or 3rd generation TKI. I was started on this drug because I had a high Sokal score and we needed to get things down quickly as I was obviously heading in the wrong direction had it been left to its own devises. All 2nd and 3rd gen drugs come with heart/cardio warnings and those that have to take those drugs can't avoid the situation. Stuck between a rock and a hard place on that one. But I will say I have not seen many people who have those issues and not everyone will. This is not to discredit those that have suffered because of this.

Your doctors comment about stopping after a couple of years is unrealistic. Many people have to take this drug for life or for decades before attempting to stop and only about 40-50% succeed with prolonged remission. To be brutally honest accept that you will be on these meds for life and if one day permitting you can stop then its a cherry on the cake. Sorry if that's blunt but it's the truth.

You'll hear lots of talk on here and your doc about being MMR (log 3 reduction) which means your BCR is less than 0.1% but in reality anything less than 1% is considered a safe place and has long term survival attached to it for the majority. So with all that said your 1st goal is to have your blood panels return to normal this happens in weeks not months to all of our amazement and then to get BCR to less than 10% then less than 1% and you can relax a bit. Eventually you should reach MMR and the lower you get with that upto MMR 5 (log 5 reduction) increases your chances of stopping treatment.

If you have anymore questions let me know seeing as I am on Tasigna for nearly 2.5 years thus far. You can read all about my symptons on Tasigna here all of which so far are none cardio/heart related: https://cmlsupport.org.uk/post/60688

I wish you all the best

Alex

 

I'm very sorry that you relapsed. Do you plan on another attempt at TFR?

I won't have too much problem with compliance my job is low stress and I have a lot of time. The only reason I would miss doses would be because of side effects. I take my pills at 6am and pm really doesn't interfere with my diet. 

Gotcha I'll look for these templates.

Thanks for that reality check. Quite frankly the fact that we can expect to live normal lifespan is a miracle on it's own. Happy to know that there's a light at the end of the tunnel.

You're right processing my emotions is very important. I think reality hasn't hit yet, the fact that a cancer can be treated with pills and no intensive chemo and radiotherapy is a miracle . It makes CML feel less lethal. I have really had a weird relationship with the sickness. The month I waited for my medical file was the longest of my life, thinking about potentially dying in the next 5 years or living slightly longer but diminished was terrifying . But I accepted it fairly quickly .I also realized that I didn't have the courage to face several rounds chemo and radiotherapy and dwindling quality of life. People that go through that and keep trying are heros. I saw my aunt die of colon cancer, loosing weight, looking like a shell of herself for years and being in pain. I definitely didn't want that for me. Going from that to CML was a relief but in some ways the prospect of potentially living 30 years or more now is scarier. I've been mostly numb to my diagnosis apart from the first two days were I was told I had a blood cancer where I was filled with fear, not of dying but of how I was going to die .Wich makes me think I need to consult for therapy . 

My platelets hit 1400 at the highest point. But it's difficult to take my result at face value since my body was battling an infection that was in my heart (pericarditis) when I hit 46K WBC. Covid messes with WBC count and platelets even causing strokes . Also My spleen was 4 inches oversize wich is not a lot for someone my height and weight..So my WBC might be lower so I think they caught it very early.

Thanks Alex! Good luck to you. 

 

 

I can echo all those feelings buddy and those thoughts sometimes creep back in. You’ll have months when it’s relatively easy and others where you are consumed by it. At least that’s my story so far. But every time you test and you’re in a good place you can live. The constant waiting and testing is a drain in itself but I guess we will get used to it more. I had therapy for a few months on a weekly basis it really helped me process everything and helped me clear my mind a lot so don’t hesitate to do that, you’ll no doubt get a lot of none CML baggage of your chest too I certainly did.

I take my meds at 8 and 8 and its become second nature now. The only time Tasigna is a pain is when you socialise ie go for meals or drinks with friends that can be a pain but it’s a small price to pay. I am sure your side effects will lessen give it sometime all of mine are manageable but the fatigue kicks my butt a lot and I didn’t start feeling that until 1 year in. I get it less frequent but it does seem to cycle. I’d say by a couple of years you’ll know where you stand should you stay on Nilotinib. The plus is it should get you their quicker I’ve responded ok not great but most do. You can call me sloth.

Good luck to you too and good luck switching to Gleevec.

Alex

Hi. I'm not sure about another TFR attempt. My first aim to get back to log 4 reduction - BCR-ABL below 0.01%. If I can get there and sustain that for a few months I would want to go back to 200mg rather than the standard 400mg. When I did that most of the side effects disappeared.

Can I also say that side effects are not a reason for missing a dose. If the side effects get too bad you and your consultant need to find another drug, or be able to justify a dose reduction because your results are good. Dose compliance is non-negotiable; data shows that if dose compliance is not very high outcomes are poorer.

Yes allastair I'll avoid missing doses thanks for the advice! Will you go lower than 200mg?

Just by talking to you guys  and  thinking about my treatment goals dose reduction seems to be the smartest move. The only one that doesn't sacrifice long term wellness for short or mid term goals. Time is our best friend, the longest we live, the better our treatments will be. With dose reduction, short term you get to live with less side effects and long term mitigation of medication toxicity: best of both world. This is something that I'd like to attempt even on Tasigna would be fine.That prescribed dosage is like a size 15 shoe that can fit everyone but isn't perfect. I read somewhere that  TKI absorption varies from patient to patient by a factor of 10.

This article on nilotinib dosage reduction shows patients that actually had an improved molecular response and none had a cardiovascular issues (wich is usually not the case in these studies).

https://ashpublications.org/blood/article/130/Supplement%201/318/114734/...

This is what i'll shoot for. My doctor seems hell bent on TFR, I'll try to tell him that this is what I want to shoot for. Risking a 10% chance of cardiovascular or liver issues for a 10% chance of sustainable TFR is foolish long term. I won't stay on Tasigna 800mg for 24 months let alone 60. Like Alex said TFR  is  cherry on the cake. If I can't attempt it no biggie. I just wanna be healthy for the longest time possible.

Thanks for your support !