Dangling?

One of my friends made a comment to me the other day.  She's also on Halaven (eribulen) but she's doing much better than I am....fewer side effects and MUCH better response with the tumor markers.  She said something to the effect that when she starts feeling neuropathy with a drug, she gets off it.

My viewpoint has always been that I will suffer through the neuropathy because it is better than being dead.  I suppose I came to this point as I got some neuropathy with Taxol.  I got more with Abraxane, even Xeloda gave me some, and Halaven is giving me a lot.....even to the point that I have numbness in my face.  Don't get me wrong, there's a lot of other reasons I may be experiencing this in my lower lip, and teeth....and I am checking with my dentist tomorrow.... It is a listed side effect....but I could also have a tooth infection, problems with my temporal mandibular joint (TMJ), heart issues, or a host of other things.

So....maybe she's right to jump ship and I'm silly for slogging on....,I sure as heck would like to find something that works.  My markers have been playing hopscotch.  Not fun.

So, what would  your choice be? Stick it out, or stop when you get the whimper of a debilitating side effect?  All I know is that it is getting progressively harder to walk.....  I sure do wish I could convince my oncologist to do a biopsy of the gluteal mets and have rational theraputics or Caris test it out...I am getting a little tired of being the lab rat and risking the side effects when there is something else out there which may give us the direction to go without needless side effects....but this is a new process and lots of the docs aren't looking at the new methods that these two employ, just at what used to be done.  I'm not saying it is without error, but surely it would be less expensive and possibly easier on me.

Peripheral Neuropathy

I really wish that drug companies would really take a good look at peripheral neuropathy and ways to avoid it.  Peripheral neuropathy is nerve damage, usually on the hands and feet and it causes numbness which may also be accompanied by pain which is often described as "burning" or "pins and needle" type pain.  Many different types of chemo have peripheral neuropathy as side effects,  particularly  the Taxanes (Taxol, (paclitaxel), taxotere (docetaxel).  Many other drugs also cause it, such as  Abraxane, Halaven (eribulin), platinum based drugs (Cisplatin for example),  Thalidomide and Bortezomib among others.  About.com Breast Cancer has a pretty good listing of drugs which may cause it.   You can find it here.

 People who have pain associated with it are often given drugs to help, many being drugs prescribed for neuropathy associated with diabetes.  Fr those of us who just have the numbness, well.....they are still trying to work out things to help us.   Usually, B vitamins (B-1, B-6, B-12, ) and vitamin E are suggested....but they never helped me.

I have had some neuropathy from Taxol (1998), Abraxane (2010-2011) and now Halaven.  It never completely went away, but at least after 6 months of  being off Abraxane, I could feel below my knees.

Granted....mine is severe, compliments of having had so much chemo.  I cannot feel my hands and feet at all, which makes for interesting typing.  It may seem like something silly, but it affects my balance. I can't get feedback from the ground to tell me if I am losing my balance,until I've already toppled.  Buttoning and unbuttoning things, opening containers, and other "simple" tasks become almost insurmountable.     couple of years ago, I sprained my ankle as I thought I had picked my foot up high enough off the ground to step over some plastic....only to get my foot tangled in it and causing a fall.  I was fortunate I didn't do anything worse.

Presently, I have been taking a month long break as it has made it so difficult to do so many things.  However, it isn't long enough to see any real positive results.   I have also been experiencing muscle weakness, or peripheral motor neuropathy in my legs----I put my weight on one of my legs only to  have it collapse underneath me, and I cannot get up by myself unless there is something nearby to help me pull myself up.  It has also made quilting very difficult.

 I told my oncologist that the neuropathy was causing me to walk like Frankenstein as I couldn't feel my feet, and they don't respond well, so I sort of have a "dropped foot."  This change in gait may have been the cause for a tightening of  tendon in the back of my calf, or it may have been just another side effect of Halaven as it has gone away with the  break, even if the neuropathy is still substantial.

If you experience peripheral neuropathy, you need to keep some things in mind:

• Be aware that you may not be  able to feel hot or cold surfaces and you may burn yourself---(particularly on my hot deck which gets no shade!)
• Always wear shoes and socks to protect your feet as you may injure them without really feeling it.  
• Check your feet before you go to bed to make sure you don't have any cuts, fissures or problems on your hands and feet. 
• Wear gloves when doing housework and gardening.  You must take every precaution to protect your hands. 
• You may have cramping and slowed or loss of reflexes (my games of Bejeweled are way off!).
• Use handrails even if you don't think you need to.  Better safe than sorry.  
• If you have weakness in your legs like me, or balance issues, by all means get a cane.  Hopefully, it will only be temporary, but it is a heck of a lot better than sporting the bruise I currently have on my knee.
• Another thing, limit alcohol as it may make things worse. 

Another wonderful side effect?  It can cause constipation, as well as loss of muscle mass and strength.

Yeah.  Cancer isn't for sissies.

Sorry....no photo...the only thing I could think of using was a shot of my now yellow bruise on my knees