14 replies to this topic

[CallMeLucky]

As of today I have been off Gleevec for 10 days.

Here's what I noticed.

Fatigue - for the most part I would say it is probably about the same maybe a little less.  This one is hard to gauge because I was on vacation with family at Disney and we did a lot of running around etc.  So I was rightfully tired at the end of the day, but I was energetic during the day.  I took vacations while on Gleevec, and I noticed that the fatigue had let up some when my mind was distracted and I wasn't in the daily grind.  It is hard to tell if there is any real difference here, for the most part I would say probably about the same.

Muscle pain/spasms - I've seen some improvement here.  I still have a lot of low back pain and the pelvic pain problem I have is ever present.  My legs in general feel pretty good and I have not been having muscle spasms.  I am able to stretch and I am able to stress my muscles with push-ups without any pain.

Skin - Big improvement here, I spent a week in the Florida sun (it wasn't that hot) without any sunscreen.  I got a nice tone to my skin color, if I had still been on Gleevec I would have burned because I burned with much less exposure in the past.  I've lost the pasty white skin tone and I am not showing signs of easy bruising (I carried a back pack all through the parks, which have been leaving bruises on my shoulders where the straps rub - I didn't get that at all this week).

Puffy eye - I still have some bags under my eyes, but they have gone down quite a bit, much less noticeable than before.

Overall I would say each day off I was feeling a bit better, I'm sure some of it was psychological, but there has been some noticeable differences.

Today my holiday ends and I start Sprycel.  I took my first pill a couple of hours ago.  So far nothing really to mention, I have some tightness in my chess, probably stress, doesn't really feel like heart or lungs, more like the sternum - I'm pretty sure no one develops a PE or PAH in a couple of hours, I know that takes time to build up when it happens.  This pain isn't entirely new so probably not related.  Starting to get a bit of a headache, hoping it doesn't get too bad.  Going to try and go to sleep and see if I can sleep through it.  Hoping for the best with this drug.  It was a tough decision given that Gleevec was working on CML, but the side effects were taking a big toll.  Hoping I don't go from the frying pan to the fire.

I have blood work every week for next four weeks then I go in for PCR test (was due in Dec anyway).  I will see Dr early Jan for results, assuming I have no reason to see her any sooner.

I had a blood draw today for another PSA test.  I'm sure it will be elevated, since the pelvic pain symptoms have been really bad.  As much as it sucks, I just keep telling myself it is good, everyone says with Prostate Cancer there would not be pain, so all symptoms and signs point to prostatitis.  Still very unsettling that the PSA is up and I doubt I will avoid having to get a biopsy if it comes back elevated again.  I guess it will be worth it to just get a definitive answer but still very upsetting.  Also unsettling that if it is prostatitis they aren't really offering me any options.  They're just kind of looking at it as not being prostate cancer and not saying much more.  I will live with the pain if it means it is not prostate cancer, but the pain kind of sucks and this seems to be completely isolated from my CML world.

I turn 40 in a couple of weeks, I feel a lot older - on the flip side 2 1/2 years ago I wasn't sure I would make it to 40 (perhaps I should keep my mouth shut for a couple more weeks)!

Hope everyone else is doing well.....

[mariebow]

CallMeLucky is is great that you soon turn 40.  Hope that Sprycel will work a lot better for you.

[Ray99]

Lucky,

    Good to hear that you felt better during your drug break and vacation.  Hang in there with the effect of drug change.  Hope Sprycel will do better side effect wise.  Keep us posted.

[Pin]

How lovely to spend the week in the sun without sunscreen soaking up the vitamin D It's good to hear that some of your side effects improved whilst off Gleevec, hopefully that will be the last you see of them. I am sorry abut the pelvic pain continuing though, is there a possibility that the Gleevec itself was causing this?  I'm looking forward to hearing about how you go on Sprycel, hoping for it to be the right one for you! Cheers, Pin.

[CallMeLucky]

Very doubtful the Gleevec was the cause of the pelvic pain.  Prostatitis is a tricky condition that is not well understood (assuming that is what I have).  Could be an underlying infection tey are not picking up in testing, could be pelvic floor dysfunction, and perhaps some other causes.  Will have to wait and see.  In the time I was off Gleevec, the pelvic pain actually got worse.

[ChrisC]

Hey, Lucky, thanks for posting: you are in our thoughts )

Here's hoping that there is enough of the good life to distract you from the current situation of starting Sprycel. Remember: we're all different and your journey is distinctly your own. Wishing you the very best of life . . . enjoy!

ChrisC

[Tedsey]

Don't have much to add.  I just want to wish you the best of luck on Sprycel.  It appears to be doing its job with me at keeping me CCyR going on almost 2.5 years.  I know you will continue to get excellent results.  I feel great on it and don't really notice any side-effects.  I always wonder what aches and pains are the drug and what is just growing older, LOL.  It is hard to tell when you hit 40!  I hear younger and healthier parents in the schoolyard complaining!  Heh, heh.  Hoping your transition continues to be smooth.

Teds  

[Calalily]

Hello CallMeLucky, I hope you find the new medication works well for you and it's a smooth transition. Sorry to hear about the pelvic pain, I hope your doctor finds out what is is and treats you. Hope your upcoming birthday is a very happy one and that you're treating yourself to something nice! Calalily

[Pin]

Ah - I'm really sorry to hear this, I was hoping that it would be something that might go away with a drug switch. Mine comes and goes, and nobody has any idea what it is, but I empathise because it can be very painful and unpleasant.

Funny, kind of related story - At my last appointment, I decided to let my doctor know about the side effects I've been experiencing just to gauge if what I was experiencing was normal. So, I had written out a list (because there are that many, I wanted to make sure I didn't forget any) and so she had a look at my list and proceeded to tick off the ones that were "Gleevec-related" and the ones that "weren't". I was left feeling pretty invalidated - so I assume she thinks I am making it up, or these problems are just coincidentally occurring at the same time. Not impossible, I'll admit but it made me feel like a right idiot for even bringing it up!

[acb]

I may have missed an update, but just wondering how Sprycel is working out for you. Hope all is going well with it and that your PSA results were favorable. Happy (early) Birthday!

[CallMeLucky]

Well after a week and a half on Sprycel, so far not too bad.  I had a slight headache the first day or two and thought "that wasn't too bad".  Then about two nights ago I got hit with a migraine and felt like I had the flu.  By last night I was starting to feel better.  I had a slight rash on my upper arms, didn't itch but I noticed it in mirror.  My head has been really itchy, like a dog with fleas but that is also settling down.  I noticed my hair is getting thicker again (Gleevec had thinned it out) so that may have something to do with the itching too.  In general my head is clearer, I do not have the foggy feeling I had on Gleevec.  Skin has improved greatly and I don't have the muscle spasms anymore (so far).

I got the results of my first CBC since on Sprycel and it was very good.  All counts in normal range, dare I say strong.  Platelets >200, WBC 6.2, ANC 3.0, RBC >4.0, HGB something like 14.  So all in all very good, liver enzymes were also normal.  I was almost a little put off that the counts were higher because I expected them to drop and then I factored in the fact I was off Gleevec for 10 days and worried a bit that maybe as soon as I stopped TKI things started to take off, but I don't think that is realistic.  I looked at my last CBC right before I stopped Gleevec and the numbers were not much lower than they are now.  I have been fortunate that my counts have held steady - hopefully that will not change with Sprycel - one week is not enough to tell, but so far so good.

As for PSA, I see the urologist on Friday.  I am not getting my hopes up, I am expecting the number to be bad, not that it is definitely prostate cancer but I don't expect the PSA to have gone down.  I have been in more pain in the pelvic area and lower back has been killing me.  I actually have a lump in my lower back which is freaking me out, but it is soft and moves.  My chiropractor looked at it and said he didn't think it was a malignant tumor based on the way it felt, he said it was too soft and it moved, he said he thought it was a Lipoma, but I should show the urologist. I'm trying to keep a clear head about everything.  I know something is wrong there, but so far it does not behave like cancer and they say the odds are in my favor, but it is still hard.  I am in quite a bit of pain in that area, but again they say that is good.  They say I would only have pain there from prostate cancer if it was spreading and there are no signs of that.  The MRI was clear and overall I feel pretty good.  So I wait and see what next PSA shows.  I'm betting I will wind up getting a biopsy since that will be the only way to put this to rest, but I will know more next week.  Hesitant to do biopsy based on risk of infection, but may have no choice.

In mean time I am trying to focus on other things.

Thanks for asking/listening.......

Hope everyone is feeling well......

[TeddyB]

Hey CallMeLucky;

Glad to hear that your cbc is good

Hope you get some closure on the other issues soon.

Keep us updated.

Teddy

[Tedsey]

Dear Lucky,

Sorry to hear you have this hurdle to jump.  Keeping fingers crossed all will be well.  Re. CML, I am venturing a guess that your counts will remain normal.  Since you hovered around PCRU, the leukemic cells in your body are very low.  The disease is almost non-existent.  My guess continues that since the TKI for you is now "maintenance", there won't be much for the drug to do its magic on.  Thus, no counts outta whack resulting from the disease.  I know our friend Susan's counts tend to run low on Gleevec and she has remained PCRU for over a decade.  Nevertheless, all our bodies are different.  Some of us may need dose adjustments.  But until that is studied and becomes standard practice, it is always "watch and wait".  I am glad to hear you are doing so well on the drug so far and the change was not too traumatic. 

I have a question about the increased risk of infection.  Are the odds increased because of the procedure or the Sprycel?  I haven't heard any warning about Sprycel increasing the chance of infection, but I don't always read everything, or the fine print, (sometimes I just don't want to know).  If it is a caveat due to Sprycel, I would think with your counts all in the right place, you would have no higher risk than anyone undergoing the same biopsy.

Good luck, and wishing continued good health to you,

Teds 

[Ray99]

Lucky,

   Nice to hear that you are doing fine on switching to Sprycel.  I am particular interested in the hair growing thicker.  I am on Tasigna and noticed that my hair is thinning, not sure it is due to TKI or just being growing old.  My doctor is contemplating to switch me to Sprycel if the next PCR remain flat or have an uptick.  It will be an extra bonus if Sprycel can help the hair grows back :-)

Ray

[CallMeLucky]

Teds - The risk of infection with a prostate biopsy for a "healthy" person is noted 2%-3% or something like that.  I always worry that with a disease of the white blood cells, I should try to avoid putting them to task.  Sprycel does have a warning about increased risk of infection, but I believe the other TKI drugs do as well.  I do not know if that is an extrapolation of the risk of low blood counts (i.e. you may get neutropenia, which would increase risk of infection) and they are not explicitly connecting the dots, or if the issue is a potential for increased risk of infection in spite of blood counts (along the lines of I have plenty of soldiers to fight, but they are not very good at it).  Regardless I am hesitant, but at the same time I am so worked up about this issue, I may just go ahead to end the pain of not knowing.  This low back pain has me freaked out - it could be an indication of prostate cancer, but it could also be attributed to a dozen other things including prostatitis.  At the end of the day my PSA is elevated a lot for my age and no one can tell me why.  There is no sign of infection, but apparently there is no sign of cancer either at this point.  I try to take comfort in the "normal" MRI, but the doctor threw in the disclaimer that it was possible to have prostate cancer and not have it show up on the MRI.  So given the rapid increase and the pain, it is either an undetectable infection or cancer.  i don't have a fever or increased WBC to indicate infection so I am worried and to be honest I am just so tired of worrying.

Ray - I don't think the Sprycel is causing my hair to grow as much as Gleevec may have been causing it to thin.  Coming off Gleevec is more likely the reason for the hair thickening up.  In your case switching drugs may result in the same.