24 replies to this topic

[Pin]

Hi guys, I'm looking for some advice and experiences to help me make a decision

 

I've just seen one of the top specialists in Australia to discuss what I should do next with my treatment - I was hoping to reduce my dose to cope with side effects, but was influenced by the doctor's opinion that cessation is a potentially close goal for me, and if I reduce, I may lengthen the time it will take to get to a point where I can try, or the point where it is most likely to be successful.

 

Given my local testing equipment only measures accurately to MR4.0, there is no data on how low I actually am - I had a test done in Adelaide, which showed I was 0.002 - so I am currently between MR4.5 and MR 5.0. Close, but he seems to think a better option is to switch medications, see if it helps with side effects, and beat the CML down even further with the goal of increasing my chances at cessation in a year (max two). Of course, I can stay on Glivec if I want, but it may take longer.

 

So, I guess if I try a different medication, I'd be hoping to reduce some of my worst side effects (fun list below!) - has anyone switched from (full dose) Glivec to (full dose) Tasigna or Sprycel, and had a good experience? 

 

If I have to switch, I'd hope that some of these side effects would improve...

1. Brain fog, concentration/memory problems
2. Muscle cramping and fatigue
3. Fluid retention, facial swelling
4. Phosphate, iron depletion
5. Gastrointestinal problems (bloating, gas, diarrhoea, nausea, severe pain)
6. Feeling cold, increased vellous hair ?thyroid
7. Sweating and heat sensitivity (heat rashes)
8. Hypoglycemia
9. Severe dry eye (I've had punctual plugs)
10. Healing issues (tendons), increased swelling and bursitis
11. ?Susceptibility to neck nerve swelling (thoracic outlet syndrome)
12. Thin skin, skin tearing, bruising, blood blisters, dry skin, sensitive skin

Less bothersome side effects

Pale skin, sun sensitivity, burning, Nail ridges and brittleness, Changes in hair texture and colour, Dizziness and visual disturbances, Occasional reflux, Occasional eye bleeds

 

 

[Trey]

I would switch to Sprycel, 50mg or less.  I am happy with the switched side effects I have experienced on low dosage Sprycel, and 20mg keeps me PCRU.  Sprycel would possibly set you up for a more successful cessation, however that issue is not well understood. 

[hannibellemo]

Hi, Pin,

 

That is a long list of side effects! I was on full dose Gleevec for only 9 months before I developed liver toxicity and was switched to Sprycel full dose. Here is a list of side effects I lost. (Full disclosure, I absolutely hated Sprycel for the first 4-5 months.)

 

No more:  muscle cramps, gas, sharts, puffy eyes, eye bleeds. I actually liked Gleevec.

 

Sprycel: first night - vomiting with severe tremors, tremors lessening but continuing for about the first month, sinus issues resulting in surgery, heat/cold sensitivity, more severe reactions to bug bites than normal, burning feeling in upper thighs and upper arms (weird, huh?), severe fatigue for about 2 months ( I thought I was dying, I didn't know what was going on because I had never felt like that) it went away as quickly as it came, mouth sores that quickly resolved, pleural effusion at 2.5 years. Reduced dose to 50 mg. regained MMR and finally reached undetectable. Most of my side effects have been transient with Sprycel. I didn't feel a great lifting of general well being after I reduced my dose.

 

They all have side effects and maybe had I stayed on Gleevec longer I would have developed more from that drug, too.

 

I've made my peace with Sprycel and it is doing right by me in terms of response. I hope you find a TKI with side effects you can more easily tolerate! Keep us posted.

[Buzzm1]

Hi Pin,

 

First, thank you for posting your history in your Signature; it helps immensely in understanding your individual situation.

 

I agree with Trey on you switching to Sprycel 50mg, a reduced but strong enough dose for you to reach undetectable and prepare you for a cessation attempt in a year, or two..  

 

My only question would be, with your myriad of side-effects on Gleevec, never mind the lack of effectiveness in 2012, and 2013, why has it taken your onc so long to suggest a switch?  If you experience side-effects on Sprycel, reduce to 20mg.

 

Good Luck to you,

Buzz

[kat73]

Pin - I hated Gleevec.  When I switched to Sprycel, it was seamless - I never had any beginning stuff like headache or what hannibellamo experienced.  My PCR immediately went zooming down from where I'd been.  You can see from my Signature what my beefs with Gleevec were.  After the switch the puffy eyes were gone in a week (my favorite!), I had absolutely no nausea or GI issues ever again, and the malaise was a thing of the past.  I went a long time without depression coming into the picture again, but on Sprycel it was much less intense.  The pale skin and sun sensitivity doesn't change, but it's better on a lower dose, I have noticed.  In general, skin and hair issues of all kinds do seem to be part of Sprycel, but for me the rashes went away completely, and other stuff is, again, much less on the lower dose. (I'm on 50 mg.)  So, I'm betting you might like Sprycel, but there is a problem with pleural effusions, which I've had.  If you can keep your MR 4.0 or 4.5 on 50 mg, go for it!

[jjg]

Hi Pin, I think you know my views on these things... I have no idea how you've stuck to glivec so long.

I switched to tasigna, full dose because of pregnancy relapses. I had most of the same side effects as you on glivec + blood unexplained in urine and stools. Tasigna has been very good to me - I respond quicker - which I know for sure as I've restarted it twice from relapse. Interestingly the second restart has brought fewer side effects. I'm less tired even with a baby to wake me up a few times a night than I was the first time on tasigna and soooo much better than on glivec.

 

Btw if you are in Melbourne peter mac say they test down to MR4.5 but then I've also had them report down to 0.002 which is below MR4.5.

 

I was just thinking reading the PE thread that for younger more active people at least at full dose I'm glad to be on tasigna verses sprycel. I'm guessing that like me you don't have any cardiac risk factors. If you were going to go to sprycel full dose comes with a very significant risk of PE so you'd have to weigh that up with your desire to reach the stop trials. You are still probably going to make more progress on lower dose sprycel e.g. 50mg that Trey recommends than on 400mg glivec.

 

I am not gunning for the stop trials on tasigna, I just seem to hang out at around MR4.5 so it's not likely to happen for me any time soon and the goal will be to minimise treatment. I also wouldn't be trying again to qualify for a stop trial (> 2 years PCRU) before trying for a pregnancy as even then you are more likely to relapse than not.

[Pin]

I would switch to Sprycel, 50mg or less.  I am happy with the switched side effects I have experienced on low dosage Sprycel, and 20mg keeps me PCRU.  Sprycel would possibly set you up for a more successful cessation, however that issue is not well understood. 

Thanks Trey - he suggested full dose of either Tasigna or Sprycel, but I am not keen for that at all - I might be able to argue for 70mg Sprycel, but I am really worried about PEs, they seem to be awfully common on regular dose.

[Pin]

Wow, thanks guys - I'm really feeling from the comments from hannibellimo, buzz, Kat, and jjg, that maybe I have a lot of side effects!

 

I was always under the impression that everyone had this many from glivec, I mean I didn't even post all of them, I also have the bug bite thing hannibellimo! As well as other weird things like tongue sores, but when I mentioned these to my haemotologist, she dismissed about 90% of them. I still have the list of her crossing off the ones that weren't "medication-related" - of course , I knew she was wrong, but that makes it hard to argue for a drug switch when you're being told the side effects...well aren't "side effects".

 

I guess the reason I haven't switched earlier is that it was hard to switch in Australia when I was diagnosed, this is not as difficult now, and also better the devil you know, plus it was working, and working well, so it's scary to change to something else.

 

I honestly think I am leaning towards tasigna, because I am worried about PEs, and I am concerned that I will have to take full dose of either, which may increase that risk. But the 3 hour fasting window freaks me out a bit, and I don't like the idea of pancreatitis and rashes!

 

jjg - are you on 600mg tasigna?

[Jan0080]

Trey's rec - Sprycel 50 mg is spot on. People freak out way too much about the possibility of a pleural effusion. At a relatively low dosage the possibility isn't that great and a pleural effusion isn't a huge problem. Eventually, hopefully we will get the abl001 drug that will have almost no side effects - that is the future.

[Gail's]

I say go for it. Switch to the lowest dose of Sprycel your doc will allow. I am much happier on Sprycel compared to gleevec. The eye eden
Ma persisted, muscle aches, bug bite itchies and dry skin. BUT most important to me, I now am not walking around dizzy and nauseous most of the time or running to the bathroom with diarrhea. I wish I'd started with Sprycel instead of gleevec.

[Buzzm1]

Pin, regardless of whether you choose to switch to Tasigna or Sprycel, draw the line at half-dose.  

 

Starting at full dose again, which most oncs seem to prefer, is for the birds; you don't need the full dose in that your CML PCR level is almost nil and it won't take very much TKI to finish it off.  

[jjg]

Hi Pin, I'm on 600mg tasigna.

I'm interested that you said it is easier to swap now. Are you talking about the period before the 2nd generation drugs were on the pbs as first line treatment? I know during my pregnancy my doc wanted to be able to access glivec in a hurry in the last trimester just in case. She actually had steps in place to get a small amount from the company rep rather than jumping tho the pbs hoops. Do you know anything about the process for us to go back to glivec or switch between either of the 2nd generation drugs? Having said that I'd rather crawl over hot coals than go back on glivec. I was on 600mg and then 800mg so that may explain my dislike of the drug.

[Pin]

Pin, regardless of whether you choose to switch to Tasigna or Sprycel, draw the line at half-dose.

Starting at full dose again, which most oncs seem to prefer, is for the birds; you don't need the full dose in that your CML PCR level is almost nil and it won't take very much TKI to finish it off.

Thanks Buzz, I'm going to do my best to ask...

[Pin]

Yep jjg - Apparently, if you have intolerance issues (read bad side effects) you can switch back, which is really helpful as this was part of the reason I did not want to change in the first place - what if it's worse!?

Do you find the fasting an issue? I would love to lose my facial edema, I had a photo taken last night and wasn't sure who it was of

[chriskuo]

I also think switch to Sprycel is your best bet now. I wouldn't argue too much with your Dr about the
starting dose but hopefully he will agree to less than 100mg to start. The sooner you get to a stable
low level or PRCU the sooner you will be able to reduce dosage and eventually try cessation.

I have to say I have been on all 5 TKIs in the 7+ years since dx, and I did not get below MMR until I switched to
Bosulif. Over the last year, my dose was reduced to 300mg and my BCR/ABL has continued to decrease to about MR4.0.

On Bosulif, I do not have PE, which I had on Sprycel. Compared to Tasigna, the big benefits are better glucose
control and my hair color returned (no longer white) and the frizziness disappeared.

[cmljax]

PIN - we are all different in terms of our reactions to the various TKI's.  I started on 600 mg Tasigna in October 2016. As my signature shows, I hit MMR in less than 90 days and <.003% in 6 months, despite a dose reduction to 450mg in March, so the drug has worked incredibly well on my CML.

 

Side effects are another issue: Initially I had fatigue, some GI issues, brain fog, general malaise and heart PVC's.  The latter I thought were due to initial anxiety of the CML diagnosis, and this undoubtedly played a part. I have also had elevated blood sugar levels since day one and it has stayed at 115 - 120. About a month into treatment, I was inundated with squamous cell skin cancers on my arms and legs - 9 confirmed by biopsy and another 35+ precancerous lesions that were removed by cryosurgery.  My oncologist initallly said it wasn't the Tasigna, but finally admitted that it at least played a role.  He reluctantly let me reduce dose to 450mg in early March and the skin lesions have reduced significantly (only 1 precancerous one in the past 6 weeks). Then I had a 6 week bout with alternating mouth ulcers and swollen salivary glands.  CT scan ruled out tumors and stones and the ENT doc said it was cumulative effect of Tasigna.  This issue has also significantly improved since dose reduction with only mild dry mouth persisting. Just when I thought I was out of the woods, the PVC's have come back stronger than ever. I am seeing my PCP this afternoon and he is going to put a heart halter on me for the next few days.  My ekg's have all been normal so far, and even if the PVC's are benign, it is very uncomfortable particularly when they last all day.  I have had short stretches of benign PVC's for over 15 years, but never like I am having now.  I believe that the Tasigna has contributed to making them much worse than they have ever been before (irregular heartbeat is possible with all 3 frontline TKI's).  If my heart is otherwise healthy, I am going to press my onc for another dose reduction or maybe even switch medicine.  And I am actually thinking hard about Gleevec.  Oh well. we will see.

 

All of this is my way of saying that you should be aware of the heart issues with Tasigna. There is only one other documented case of skin cancer like I had with Tasigna, but despite Novartis saying it's not the drug, I know it was a contributing factor in my case. If you have no cardio risk factors, it might be the best choice, but I would lobby hard for a reduced starting dose - either 450 or 400 or even 300.  Same with Sprycel - lower starting does means less chance of serious PE. No reason why you should need more than half dose or maybe less given your current PCR results.  Most oncologists hate to reduce dose because there is only downside for them, but you should argue hard for this.

 

Good luck

[gerry]

Pin, I guess the other question is how much do you love your doc. If I remember correctly you are in a capital city so there should be some choice in hematologists.
Are you in the CML for Australians Facebook. I would put the question to the members about any other docs in your city. For the most part your treatment is going well, but to have your doc dismiss a lot of your side effects is not great.
Glivec hasn't been the kindest to you in that regard. We've talked about you switching before and I understand why you chose not to. But I think it might be time. I would like to see you try a lower dose of Sprycel, but you need a doc that is willing to work with you for that.:-)

[jjg]

Pin, that's good about going back to glivec. It does also make sense now that it's off patent.

 

Wrt switching my doc was always careful to note side effects to build the case to justify intolerance. Mostly the only thing the doctors aren't going to be able to help you much with the side effects so the very least they can do it note them down. These drugs are far too young to be able to say definitively that a symptom can't be a side effect. It's much more likely in a young otherwise healthy person that your symptoms are less common and/or poorly documented side effects.

 

Re fasting. Very occasionally it's annoying but the vast majority of the time it's fine.  My take is that it's healthy not to be able to eat between meals and to be organized about meal times. I do the first dose in the morning (5am) and then ride to work (takes over an hour), then I don't eat from 2hrs before I leave work and take the tablets before I ride home. So basically the riding takes all the fasting time as you wouldn't exercise on a full tummy anyways. My doctor (along with many of the CML experts) is fine with anything between 10-14 hours between doses which gives all the flexibility I need. Sometimes the afternoon dose makes me feel a bit average, kinda shaky but still ok to ride. This never happens in the morning.

 

I'm not ready for dose reduction yet. My last two pcr were < M4.0 (one was a reduced resolution PCRU) so it that sense I'm close but we are still discussing the possibilities of a sibling project so no need to agitate my doctors even more. The scientific literature on dose reduction is building, certainly as an alternative strategy to stopping. So from my point of view the later I introduce the topic with my doctor the greater the chance it will be old news.

[trailcml]

Pin .... my biggest complaint with the Gleevec 400 mg was the puffy eyes and some brain fog. I looked like a frog and that was depressing. I also had and still have cramps but they're not too bad. I recently reduced to 300 mg (per Onc's order from a Boston CML specialist) and the puffiness is almost gone and so is the brain fog. It has been transformational for me and I'm ~MR4.5. I too was very much afraid of PE and didn't want to switch and experience new side effects. We're all individuals and this is just my experience so hoping that whatever you choose will be a good path for you!

[SUE]

Pin,

 

I had horrible side effects from full dose Gleevec(fingernails fell out, rash on legs and arms that totally befuddled all doctors, etc).  When I switched to Sprycel 6 months later I started  at 50mg.  The onc wanted me to go right up to 100mg, but I stayed at 50.  I briefly went up to 70mg, got a rash, and went right back down to 50mg, which brought me to PCRU.

 

Maybe you could get your onc to agree to start you at 50mg Sprycel and test after 2 months.

 

Good luck.

Sue