25 replies to this topic

[samycat24]

Ok..I was diagnosed at the end of June of this year with CML. I have been on Gleevec 400 mg since the beginning of July, now about ready to finish my second bottle. I have read several things on here that have helped me to deal with the side effects of the Gleevec, but I am feeling worse lately and wanted to see what advice for what will work and what doesn't work. I go back to my oncologist/hematologist in Spet on the 15th for complete molecular blood work but I'm in so much pain I was hoping for some suggestions now. My symptoms I'm having lately that have been really bad are the Leg and arm pain. Sometimes my Legs are so weak, and are hurting so bad all I can do is lie in bed and not move. I feel like they are so heavy and just this horrible achy pain through them and then severe shooting pains through my legs and arms. I have a 5 year old daugher and I want to be bale to do more with her , I have the constant fatigue as well but I figured that was always going to be there. I don't know anyone else taking this and these forums are my lifeline for all info on how to deal with this disease.

So in essence, ANY advice you can give me would be much appeciated. I tried to take Aleeve for the pain but it doesnt help and neither does Ibuprofen. Also, I know what the Dr. told me about Gleevec but what does it exactly do?? Is it a form of oral chemo? And why are the side effects so prevalent and unforgiving?

Again..any help would be great..I had the digestive side effects and still am dealing with those and the itches..but the limb pain, and weakness seem to be the worse yet for me..so any help on these would be great! Thanks guys so much! I can't wait to find something that works..I'm really getting tired of being the prone position.

[JoshLee]

Hi Stacy,

      I understand what you are going through as far as the side effects are concerned. I really do think that you will feel better with time. I know everyone says that, but most of us experience a lessening of the side effects over the first frew months. If you ultimitely cannot tolerate Gleevac there are two other medicines that are out in the mainstream right now that also work great for CML and some say, cause less side effects. I am on Tasigna and have not had a terrible time with side effects, however, when they do hit, they seem to hit hard. I'll go a few weeks without bother and then BAM I wake up and feel like I never went to sleep. Everyone's experience with the medicine is different though. I've found that it definitely helps to get out and do a little exercise. By reading your post, I bet you are thinking I am an idoit for even suggesting that. Even if you can force yourself to walk a block or two, yoru leg pain might get a little better. I know that it definitely helps me. I'll say some prayers for you and hope your blood tests come out strong and that you can get back to being a Mom. Also, if you read up on taking some supplements, that my also help. If you put "Information for the Newly Diagnosed" into the search bar for this site in the upper right hand corner, you'll find a great post by Trey that outlines the different types of treatment for CML and even some info on side effects. Hope this helps. -Josh 

[JLS]

I'm so sorry you are going through such a difficult time.

It reminds me of when I was diagnosed 2 years ago. I had those same side effects. I battled it by taking lots of Ibuprofen but as you said it doesn't help very much.

My doctor was also concerned that I was taking too much of it, at least 800 every 12 hours. So he of course suggested I take a pain medication. I laughed

as I have four children and I wondered how I could possible manage life while being on pain med, I did have to take it at night for at least the first few months,

it was the only thing that would ease the pain and allow me to get some sleep.

After a while I just learned to deal with it, but I must say I had that bone and muscle pain for at least a year. After the year I really did begin to feel better, however

the fatigue was still a huge problem. I had to nap daily and even after that I was still exhausted. I also delt with loss of appetite,nausea and just never feeling well.

After much pressure my doctor finally switched me over to Sprycel. I'm not saying that this is the choice for you or if it is even a possibility for you. My insurance

fought and fought it as Sprycel is more money, but eventually they did pay.

I feel so much better on Sprycel. However it does come with it's side effects, I have had terrible mouth soars, it is very painful and I haven't been able to find something

to help with it. But I will say that I would rather deal with this then the way I was feeling on Gleevec.

I hope that some of this will help you. It does take time, and maybe you will feel much better after a year or so on the medication.

Believe me I never thought I would, but it did get better, somewhat anyway.

Good Luck, and if you have any other questions I'd be happy to help if I can.

Jen

[GerryL]

Hi Stacy,

What are your calcium and magnesium levels like?

[valiantchong]

Hi,

Gleevec is actually more to targeted therapy than chemo, it targeted BCL-ABL gene and kill them. Most of us will have some side effect, I had experience leg pain too, after about 2 months of therapy. However the side effect will goes off within less than 2 months. Just hand in there you are doing fine.

[LivingWellWithCML]

I also had leg "bone pain", lower back pain, and pain through my spine for the first couple of months on Gleevec, and Iboprofen at night was only mildly helpful. I forced myself to exercise rigorously through that period and it helped out a lot. I am five months into treatment and still get some fleeting muscle cramps at night (mostly in the feet), but the nasty pain has now subsided.

Ironically, the leg pain was worst when I would -stand- for long periods of time (an hour or two+ with very limited sitting), but when I would walk or run ... no pain at all.

Just close your eyes and imagine that the pain is associated with Gleevec killing off the CML in your marrow (although that might not be what's *actually* happening); that vision of CML self-destructing also helped me deal with the pain for the first couple of months!

[drowe920]

I know what you talking about with the pain. I started Gleevec in Jan 2011 my white cell counts was 468,000 nice huh. I had to take pain killers oxy 10mg and was still going to the ER at least once a week for diluadid pushes. But it will get better after a few months trust me they make this seem easy but take your time don't over do it. I still get side effects like forgetting where I put my keys my cell phone etc.

[HeatherZ]

Hang in there Stacy - I too had the aweful bone pain and cramps in my legs and arms.  They started about a month into treatment and lasted a few months.  Over time they decreased a great deal.  I have 2 kids (9 and 11 when I was dx) and it was so hard to want and need to do things with/for them while being in so much pain.  I made it through by enlisting their help with small household chores - it helped them cope because they felt they were doing something (and they were) to help me.  I really hated the fact that they had to see me in so much pain but it did get better.  Like others have said - sometime a little excercise helps.  There were many evenings I would be walking - tears flowing because the pain was so bad - just to get a little relief.   Sometimes it worked and sometimes it didn't.  Hang in there - I'll send some virtual hugs your way and keep you in my prayers.

Heather

dx 3/2010 G400 since

[Susan61]

Hi Stacy:  Your going through what everyone else does, as this is all still new to you.  You could feel like this for a long time, and what got me through was seeing that it was killing off those cancer cells everytime I had to take my pill.  You have good days and bad days.  I have been on Gleevec for 11 years now, and I still get the fatigue, joint pain, etc. etc.    I am getting older, and a lot of my pain is Arthritis which is getting worse for me.

Just think how you will be around for a long time to watch your little 5 year old grow, and just do what you can when you can.  Do not try to push yourself, or try  to do things you used to do.  You will get more energy as time goes on to do more, but you will have days where you say Oh Well Not Today Maybe Tomorrow.  Your going to be fine.  I am looking forward to celebrating Christmas # 13 since I was diagnosed in 1998.

Susan

[samycat24]

Oh WoW!  Thank you all so much for all your words of encouragement, help, advice, and medical suggestions! I absolutely love this site. As for my Calcium and Magnesium levels..I believe the Rhuematologist checked all those when I went to her at the beginning of June and all she found was I was deficient in my Vitamin D. So she put me on a course of high level Vitamin D for 5 weeks. But I have increased my potasium (bananas) to see if that helps. I also use the Calcium supplement suggestion I had seen in another post for the intestinal stuff..the "yicks' as I call them. Where I commit sacrilige against bathrooms everywhere.(ok so that part really does suck). But I take the Calcium about 3-4 hours after the Gleevec because of the absorbtion issue. I have a pool here at my complex so I will be trying to make myself go down and use it some so I can get some exercise. Walking tis too much of an effort and my legs feel very heavy and weak so I keep "almost" tripping. I don't know what my white blood count was exactly when I was diagnosed. They said like 23 so I'm assuming that's pretty high because they were quiet concerned over it..I don't know what that means exactly. I'm still researching a bunch of things and medical trials as well. I am hopeing if these side effects do continue though and progress to worse maybe I can get my Oncologist to fight with my Insurance for one of the other med's. But I am using and going to be using more of the sugesstions I've seen in the post as well as others.

Thank you to everyone for making me feel somewhat "normal" about all this. It's still being processed by my brain I think and I have days whre I'm floored by it but try to pick myself up by my bootstraps and keep on keeping on. I plan on seeing my Grandchildren someday so I'm not planning on going anywhere. All your encouraging words and stories have boosted my spirits through this and I am so happy I posted. Thank you all again so much for giving me all this information and providing a new perspective in which I can look at my disease and the Gleevec. Much luv and hugs to everyone! Thanks you

[GerryL]

Hi Stacy,

Get a calcium, magnesium & vitamin D supplement - that way you'll cover off everything. Also try probiotics for the loo issues - it should help.

Take care

Gerry

[hannibellemo]

Stacy,

One thing I have noticed from your posts is that you haven't lost your sense of humor; that will go a long way towards helping you through this rough patch! It sounds as though they caught you very early, 23,000 is not very high in the scheme of CML, I'm thinking they caught it during a routine blood test? Many of us had WBCs of 100,000 all the way up to nearly 500,000.

The worst aspect of this disease for many of us is the fact that we aren't warned about the possible side effects of the treatments! "Just take this pill everyday for the rest of your life and you will be fine"! Right! No mention of the aches, pains, sharts, etc. Most of us have side effects to one degree or another on all of these TKIs (Tyrosine Kinase Inhibitors) - welcome to our very exclusive club!

I look forward to reading many more of your posts over the years!

Pat

[CallMeLucky]

I found the side effects cycle, they weren't too bad for me at the beginning, got lousy around 6 mo mark, then slowly got a little better.  For the muscle aches I found exercise and stretching can help.  See if you can try some beginner Yoga, it can really help.  Over time it should lighten up.  In addition to the side effects you are also feeling the effects of the emotional trauma that comes with the diagnosis, that can manifest itself in very physical ways and make you feel down right awful.  So yes, give it time.  I think you will also get used to it as time goes on.  I know that sounds bad, but in a way it's not so bad.  I was just thinking this morning as I got out of my car to go into work.  It hurt when I stood up, but it had this "typical" feeling to it and it didn't really hurt that bad.  I thought to myself it is strange that for the most part, I am always in pain, but it is just this thing that is kind of in the back of my mind.  It is not stopping me from living my life, just this annoying thing I have going on.  Hang in there, it will get better.

[cousineg]

Some links:

http://www.cmleukemi...de-effects.html

http://www.cmleukemi...ide-effets.html

http://www.cmleukemi...fnp-bc-ocn.html

[samycat24]

Thank you so much for everyone's help and advice. I unfortunately had to go to the hospital for the pain, it was to the point I was in tears no matter what I did. The checked out everything and could find nothing else that would be cauing this..gave me a small amount of pain killers (ugh) and sent me back home all doped up on Dilaudid. Also told me to call my Onc. and move up my appointment and let their office know whats going on with the pain. So now my appt is Friday and hopefully we came come up with a scenario that will decrease the pain..I don;t mind some pain but where I'm incapacitated is not acceptable for me. I am now taking a vitamin supplement at least 4 hours after the Gleevec , that's a multivitamin with magnesium, potassium, and calcium all in it as well as other vitamins. I'm hoping that will start to help, and as far as the exercise I can barely even tolerate sitting or laying so thats kind of a mute point for now. I'm hopeful that I get some answers on Friday and either put on a new medication or something for the pain that wont make me too loopy!

But thanks to everyone..all your advice has been a great comfort.

And then Saturday the first Comics For a Cure event will be held here in Melbourne, Fl at the local comic shop. I organized a charity event to benefit LLS and the Light the Night Walk for this Saturday. The Shop will be donating 10% or more from sales to the LLS and artists will be doing pieces for dantions, we have donated comic art work from established comic artists that will be up for raffle during Sept, and it all is to benefit the LLS throught he Light the Night walk for my team. Everyone here has done a phenomenal job with it and I cant wait to see the turn out..I even got Subway to donate food for the artists and staff.

So all in all I may be fighting this and the pain may be bad but there is this glimmer of light that Im surte will lighten my spirits up this Weekend and my Oncologist appt on friday! Wish me luck guys and thanks!   

[Happycat]

Stacy,

I'm so sorry you've been in such pain.  I had bone and muscle pain pretty bad, too, and of course, to complicate matters even more - it started when I was on vacation!

Anyway, when I got back and saw the doctor, he first said I should have called him for a script on vacation. Then he prescribed low-dose prednisone to control the inflammation and vicodin.  (I was expressly forbidden to use ibuprofen for awhile, and tylenol does nothing for me, so we went to the opiates.  Luuuvvv the opiates!)  Between the prednisone and the vicodin, I got the most relief.  I was on the prednisone for maybe 3-4 wks to get it under control, then tapered off.  It was a godsend.

I was also taking flexeril for a while, too, to control spasms.  I usually took 2 x 10 mg of those, but only before bed.  If I needed it in the daytime, I stuck with just 10 mg.

The other thing that really helped me was to slather ICY HOT (or Ben-gay) all over my arms and legs where it hurt the most.  It's essentially aspirin.  The pain relief is not immediate, but it does act as an anti-inflammatory.  I often find if I put in on before bed, I wake up feeling much, much better.

HTH,

Traci

[samycat24]

okay.So most of you know about the severe pain I've been having in my limbs, and the fact I even had to go to the ER for it. I put up this post awhile back about the side effects for Gleevec since I read that the pain is called bone pain and it';s listed as a side effect of Gleevec.. Now here's where things get very interesting..

.so went to my Oncologist and his reaction to everything was quite shocking to say the least. He not only refused to give me anything for my pain I've been having in the limbs..but accused me of being suggestive to things I'm reading on the internet and said that Gleevec doesn't cause any type of bone pain, especially the kind I'm describing. I then told him I hadn't even looked up the side effects until AFTER I started experiencing the digestive/bathroom problems and the severe limb pain. He said , that he had never heard of Gleevec causing these side effects and that there was nothing he could do for me. They took my blood, my $30 co pay, and said if my molecular tests comeback good then I don't have to see him for another 3 months.

He actually seemed shocked when I said how much pain I was in, and the idea that it was the Gleevec shocked him. I couldn't believe this was happening. He actually accused me of being very suggestive to other peoples influence, especially with my diagnosis. But the fact that he seemed angry even insulted when I asked about switching to a different medicine besides Gleevec, caught me off guard. I mean he's an Oncologist..I'm sure other patients that have been on Gleevec ave discussed their side effects with him. And everyone says how wonderful he is but both my boyfriend and I each saw a totally different side of him. Now I still have trouble getting around, It hurts so bad I cry, and my Dr. is a complete wack a do anytime you bring up the side effects. And the fact that he said Gleevec doesn't cause these effects..when I started having the pain I looked up the side effects and bone pain was right there in black and white..

So now what do I do? He's only run the blood tests so far..no marrow aspirations, nor do I think he will ever do any. And after the way he behaved I really don't feel comfortable seeing him again. should I report him for the way I was treated? Who would I even report him to? And is that a justifiable enough excuse to find a different Oncologist? Any advice would help!

[Susan61]

Hi:  First let me say that if your not comfortable with this Oncologist, then go see someone else.  The joint pain is very real, and I have seen some suffer more than others.  You said you were checked out at the hospital, and they found nothing else wrong.  Maybe this doctor should just google Gleevec Side Effects.

You cannot start taking all kinds of pain meds to relieve this pain.  It took me a long time to get relief, and I still get pain in all my joints at different times.

The one problem that never went away for me after all these years is the Foot Cramps.  I get them constantly.

I think you need another opinion for your peace of mind.  Let us know how you do.  I know some who switched from the Gleevec because they could not tolerate the muscle pain.

[drowe920]

Mine does the same thing he tells me it will go a away. It's like he does don't want to deal with it know that it is a side effect. Here is what i did i called the LLS and they gave me some good advice. I may have to leave my doctor over this I have much respect for him but that pain drive me crazy. Whew i feel bad for you but i least i know its not just me. All I what to do is go back to my old life if that means I hace to take a few extra pills a day so be it. See if your insurance will cover a pain management doctor. And F.Y.I for everbody the lls does and will help with problems. They helped me . 

[jjg]

Sorry to hear of your painful into to CML/Gleevec. Yes in my opinion you would be justified in looking for another oncologist. When you are struggling so much with pain you should be able to raise the issue of 2nd generation TKIs. You need to respect your oncologist on at least a few different levels. In theory you don't need to like them but I both respect and like my oncologist and it makes the whole thing just so much easier. Ignoring side effect (as if that is actually possible) chances are your CML will be medically boring i.e. you will take the drug, respond well and get MMR hopefully PCRU but if something were to go wrong with your CML is this the guy you want to look after you?

Btw I noticed you are from Melbourne, me too!!! but different country. I believe that you pronounce it much as it is spelt with a "born" while down under we tend to say "bin".