35 replies to this topic

[Judy2]

Hi Everyone,

I know that we have had many posts regarding Sprycel side effects, sorry for another one. I am having muscle pain and also a burning feeling in my left thigh. It started out on both legs but is now just on the left side. When I rub the skin  on my thigh it actually burns. I do have a bad back, although my back has been fine now for over 4 years and at present my back does not hurt.  On occasion when I have had leg pain it has been from my back even when my back didn't hurt as it radiated to my leg. So the question is, has anyone had muscle and/or burning pain in their limbs from Sprycel? Also, in the past when I have had burning pain in my leg from my back my skin did not burn when I touched it so this makes me think it might be from Sprycel. Sorry for another Sprycel side effect post but I am in pain and feeling miserable. Thanks in advance for any help.

Judy

[Judy2]

Hi Billie,

Thanks for answering. I had a ruptured disc 12 years ago, had back surgery and all but this feels different, still I'm not sure. If it doesn't go away I will call my doc but thinking if it might be from Sprycel I should call my onc, if it's from my back I should call my orthopedic doctor.

I do remember Gunsmoke, I don't remember Chester but I do remember Miss Kitty. I also remember The Rifleman and The Guns of Will Sonnett.

Billie, watch out for Phil, I mean the stingrays!!!

Judy

[pammartin]

Judy,

I am so sorry you have the Sprycel burn.  I have had the same effect, that is one of the things I felt on my scalp, but at the time I had difficulty explaining it.  Mine seems to be centered around my neck, scalp, cheeks closer to my nose, and between my eyes.  When I first started taking Sprycel I had exactly what you are describing on my neck and chest, and you are right, it did burn when any part of the skin was rubbed, even accidentally.  My hands and feet would burn from the inside out for the first two weeks of Sprycel, then it just stopped, it was noticeable enough because I had been feeling so miserable.  I still experience this one in a while, but nothing like it was those first two weeks.  I hope your symptoms begin to disappear starting today.  This road we travel isn't a pleasant one, and the beginnings are so difficult, not only do we deal with the news we have leukemia, we then are almost immediately hammered with side effects, worries about the meds and how they are working, then add in stress and anxiety over labs and other factors and no wonder we feel like a train wreck.  Keep us posted, I sent you message yesterday, didn't get yours yet, I did get out for labs yesterday, but forgot my darn phone!   ggggrrrr

Feel better!

Pam

[Sneezy12]

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[Judy2]

Hi Pam M,

I'm sending you a private message. Please keep us posted on your labs!!!

Judy

[CallMeLucky]

I get this from Gleevec.  Keep an eye on it and let your doctor know, but I think it is just one of the fun side effects of TKI treatment.  I would expect it to cycle away at some point and wouldn't be surprised if it showed up again in the future.

[Judy2]

Thanks, CallMeLucky,

I'm always looking to have fun, great to know our TKIs can provide us with that.

Judy

[hannibellemo]

Hi, Judy2,

I affectionately (not)) referred to this as the "blast furnace" effect. I would experience it on the front of my thighs and my upper arms. The interesting thing was that when I first started Sprycel I would have these shivering episodes, very pronounced my first two nights, at the same time I was experiencing the burning sensation. These drugs are nothing if not interesting in the way we all react to them.

Pat

[Judy2]

Hi Pat,

Thanks for the support  The BLAST furnace effect, interesting chioce of words My pain started in the side of my thigh and now is on the front part. TARGETED THERAPY? WHAT AM I, A WALKING DART BOARD? A rash with welts, this terrible muscle pain, stomach cramps and some nausea.   ....and this is on only 50mg per day.

Judy

[Lynne D]

I've been on 50mg of Sprycel since Nov. and I have all what you mention above. It comes and goes. It was worse on the 100mg (or so I thought) but for a couple of weeks I've really been itching all over I just rationalized it as being winter dry skin. My face has never really cleared up especially my eyebrows and today I can literally feel the rash popping out all over my ears, scalp, cheeks, shoulders, stomach, back, legs. I didn't think I would react so badly on 1/2 dose. Benedryl isn't helping and I have a prescription cortisone cream. I feel like I am crawling out of my skin and I am on fire. Oh well so much for the 1/2 dose theory of mine. My hair follicules are also pretty nasty. Every pore on my arms and legs looks like a red dot.

[Judy2]

Hi Idagata,

I am taking oral Prednisone 5mg per day and it has just about completely cleared up the rash and welts. On occasion I also supplement it with 180mg Allegra. If my muscle pain continues much longer I will have to call  my onc. I'm hoping you can find some relief from your symptoms, it's lousy having to deal with this.

Judy

[pammartin]

Billie,

I am trying not to grow horns, but could really stand some hair implants?  You are right, you are in a beautiful place but if you don't feel well or want to be there, it isn't all that great.  I love Sanibel, but that is because I just visit, if I knew I had to stay there for a few months I would probably be right there with you.  Be careful of the stingrays and the dolphins, if you see a whale, any kind, get the video cam out!  I owe you email, will get working on that!  Hope you feel better soon.

Pam

[Judy2]

Hi Billie,

Thank you so much for posting, you have no idea how much I appreciate it. It's always nice when my imaginary friends (not so imaginary) answer my posts but even more so when I'm feeling miserable. I tried a Tylenol last night but it didn't help. I took a Flexeril about 2 hours ago and I think that has helped somewhat. One more day of this and I'm calling the doctor.

Billie, please don't feel guilty. If you are not feeling well it doesn't matter where you are and if you are feeling well than no matter where you are it is the right place to be. You will be home before you know it. Also, don't suffer in silence, we are all here to listen to you.

Thanks again for replying to me.

Judy

[pammartin]

Hey Judy,

How's it going?  Making a call to the dr might help, at least to tell medical people you are not feeling well.  Could this be related to your other disorder?  Wegener's (probably spelled that wrong).  Also, was wondering if you signed up for the Sprycel support?  It is noted as a contact to tell Bristol Meyers Squibb about side effects, what is going on, and record data.  So far I have received two calls from the RN, her name is Karen.  There is no interaction, she reads from the brochure about Sprycel, goes over the fact she cannot give any form of medical advice, even if she is an RN, then about 20 minutes after calling and the brochure is covered, she says good bye.  I was under the impression it was going to be much different.  I can read the brochure, and if I have questions I will call, but having the same thing read to me every month is fairly annoying, although the lady is very nice.  I didn't have the impression we would become fast friends, but I did think it would be a chance to speak of our side effects and note general health on Sprycel.  If you did sign up, what are your thoughts, and if anyone else has an opinion I will start another discussion, if interest is there.  Feel better Judy! 

Pam

[Judy2]

Hi Pam and Billie,

I hadn't heard about Sprycel support, does it include psychiatric care when you see the price? I do plan on calling my onc if I'm still in pain on Monday. My new onc. is great, every time I see him he says, now remember, if you don't feel well call me and don't be shy about calling. He also gave me his pager number in case I need him to call me back right away. He stressed to me to use the pager if I needed to, not to be shy about using it. So on Monday, if I'm still having pain I will call him. I did take a Flexeril last night and it did help.I was able to fall asleep although I kept waking up during the night but was able to fall back asleep each time. As for the Prednisone, it is a  huge help regarding the rash. Actually my rash is almost non-existent now that I am on 5mg daily. Also, my hair had been falling out, although this started before the Sprycel, and the Prednisone took care of that too. Pam, would you think of trying Prednisone? They say 5mg is a very small dose. How are your labs on the reduced Sprycel dose going? Billie,does Sprycel give you a rash? Also,Billie, you will be  home before you know it, hang in there.

Hugs,

Judy

[pamsouth]

Hi Judy,

I have been following your post.  Hopefully in a few weeks things will pan out Ok on the Sprycel.  I have been on the Gleevec 6 1/2 years, but I try and keep up with you newly diagnosed, especially if I every have to change TKI.  You new people are my, not sure how to put that.  I guess you could say I need to observe how you progress just in case.  Also a good feeling to know it working for you as well. 

Was just wondering about your comment; I hadn't heard about Sprycel support, does it include psychiatric care when you see the price? Do you know the price? Let's see you are on 50MG.

Best wishes, PamSouth

[jrsboo]

Sprycel support is a program offered by Bristol Meyers.  They will send you pill dispensers, medical diaries and tons of information about Sprycel.  You can also sign up for the My Sprycel Support Co-Pay Card.  This will pay up to $100 per month of your monthly co-pay.  You register the card with your pharmacy.  You will also receive occasional phone calls from a nurse from Bristol Meyers, who will tell you she cannot tell you anything, but is there anything you wish to ask her?  It is very odd.  They have also called me to go over any side effects I was having, that phone call lasted quite a while with them taking down all the information I was willing to give them. 

You can click here for more info:  http://www.sprycel.c...rt-program.aspx

Caroline