Chemo and RLS

Sleuth · Post by **Sleuth** » Sun Nov 14, 2010 10:02 am

I started chemotherapy for Stage 3 breast cancer three weeks ago. Since then, my RLS has become so much worse. I am using anti-nausea drugs that are not supposed to trigger RLS. I ran the drugs being used past Dr.Buchfuhrer by email. He says none of them should affect my RLS. He believes it is the added stress of the chemo.

I cannot believe that the day after I start the chemo the RLS became so much worse. I also have been under tremendous stress for the past few months.

Has anyone had chemo? If so, how did it affect your RLS.

Thank you.

Dale

Post by **ViewsAskew** » Sun Nov 14, 2010 8:18 pm

Hi Dale,

I've missed you and have hoped that you were doing better.

I imagine this was a bit of a shock. Going through chemo must be quite difficult.

here's a link to Carolsond's experience: http://bb.rls.org/viewtopic.php?t=6999&highlight=chemo

It's the only one I can find, but it's identical to your experience. Carolsond will hopefully check in soon and see your post.

Sleuth · Post by **Sleuth** » Mon Nov 15, 2010 6:30 am

Ann,

Thanks, but that experience is not like mine.

My RLS is restless legs which wouldn't go into full effect until later in the day. Since I started chemo it is just about 24/7.

The combination of the chemo side effects and the RLS are pretty hard to deal with. I'll be having chemo for about six months to boot. I am also afraid that when I stop, the RLS will not go back to pre-chemo days.

Dale

Post by **ViewsAskew** » Mon Nov 15, 2010 9:46 am

If the drugs aren't causing it, there's always hope that it will go back to pre-chemo levels. It sounds like getting through this will be tough with 6 months of chemo.

Did you ever find a doctor to help? I haven't found one locally as of yet.

Sleuth · Post by **Sleuth** » Mon Nov 15, 2010 10:23 am

I stopped looking for a doctor a long time ago. I decided I didn't want to take any of the medications they would prescribe. I felt that my RLS was preferable to the medications. Sort of is the cure worse than the illness thing.

I have become very anti-medication because my RLS was made much worse by medication and a few other permanent ailments I have from medications. What's cruel is that now I'm poisoning my body with medication in the hope of getting rid of the cancer. This is the hardest thing I've been through in my life.

In the midst of all this I am finally moving this week. I have been trying t move for almost 3 years. Talk about timing. :roll:

Dale

Post by **ViewsAskew** » Mon Nov 15, 2010 2:39 pm

I wondered about moving. It's bad timing, but I hope you're happy that you finally were able to.

Not looking for a doctor and deciding to let the medication go sounds like it was a good decision for you.

Betty/WV · Post by **Betty/WV** » Mon Nov 15, 2010 6:29 pm

Sleuth: I wish I could get by without using medication. I suffered so long with RLS and then the doctor prescribed Mirapex and what a relief. It works very well. Sometimes the RLS sneaks through but it isn't bad like before. And even when I can't sleep, I at least can rest and not walk the floor all night.

But who knows what these medicines are doing to those taking them. I guess its a trade off.

Wish you well, and glad you have been successful with what you are doing.

BETTY/WV

Sleuth · Post by **Sleuth** » Wed Nov 17, 2010 10:44 am

I wasn't exactly "successful." I suffered plenty from RLS, but decided that it was preferable to taking medications. I was so afraid of getting caught up in the medicine cocktail experiments. I've been through that with anti-depressants and could not bear to duplicate that experience.

I may have to rethink that, though, because my RLS is totally out of control since I started the chemo.

Dale

Betty/WV · Post by **Betty/WV** » Wed Nov 17, 2010 11:24 am

I was at the point that I would do anything to get relief from the RLS. I couldn't take it anymore. My life was a miserable existence because of the RLS. I was and am willing to take the risk. I'm 74 and I don't want to spend the rest of my life suffering the way I was. Its not perfect now but better. The Mirapex is causing me to gain weight, which because of health issues may kill me. The doctor may change my meds to see if that helps. :roll:

He made a comment that makes me think he may change it to an opiate. He said "Vicodin will take care of the RLS." Hmmmm.
Oh well, we do the best we can.

Take care.

BETTY/WV

Post by **badnights** » Thu Nov 18, 2010 9:07 am

Betty: Oh lord, let him just put you on the vicodin for good and let you enjoy life.

Sleuth: at least with an opiod it usually is just one drug, not a cocktail, and usually side effects are minimal and mangeable (with most people, but there are always exceptions.)

Betty/WV · Post by **Betty/WV** » Thu Nov 18, 2010 1:38 pm

bethf: Oh, if he put me on Vicodin I wouldn't object. I'm not afraid of an opiate. I have never abused them and I trust my GP more than any doctor I have been too. So, just so I have relief from this monster, RLS. :roll:

dogeyed · Post by **dogeyed** » Wed Nov 24, 2010 3:50 pm

My Dear Dale the Sleuth,
I happened to spot your post today... gosh it's been a year or so since you last posted in the forum I'm usually in, General Discussions. We all miss you and worried for you, and I really went overboard, pushing you to do stuff that is SO hard. And us folks with RLS, everything is ten times harder.

I am quite saddened reading you have breast cancer. I had no idea. I hope very much that the good cure rate they have with these things will come true for you, too, as it should. And I was amazed to hear you are FINALLY moving out of that noisy apartment! Gosh, that was a long haul, wasn't it?! :shock:

Even tho it's good you have decided to put RLS docs on the back burner, especially after the merry-go-round you were on with that, I still recall the original doc, who you had email difficulties with, who finally offered Talwin, an opiate. Whenever you get settled in your new place, and after this cancer thing has haired up and healed over, that would be the only reminder I would give to you, to consider giving her one more shot on that Talwin. But of course I understand you cannot do one thing about it now, and it is indeed best to set it aside for the time being. Just save my thought for later, and forgive me for even bringing it up. :oops:

I'm really getting into these smily icons! Well, I hope you see my post here and consider jumping back in over at General Discussions, things have been quite boring since you left !! Yes, you were most interesting, even tho the results were always sad. Well, just wanted to say hello, SO fortunate for me that I read about your doings, and just keep hanging in. All these trials and tribulations always open another door to something better. :wink:

Bless your heart and soul. GG the dogeyed