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

Side Effects of Halaven (Eribulin)

I took this shot in Racine, Wisconsin last week.....I was just taking pictures of the architecture and laughed when I saw that I had captured my reflection in the window.  It was a wet, grey day.

I have completed my third cycle on Halaven (eribulin) and started my fourth...I have found that every other treatment just hammers me.  Because it drops my red blood cell count so low, I am often out of breath and I spend the third through 5 day sleeping  A lot.  Like 15 hours...and even then I'm not able to do much when I'm up.

The first treatment I received, I got a shot of  filgrastin (Neupogen) to elevate my white blood cell count.  My red was depressed as well..but they let it go.  After one dose of that, my counts were good.  The second series, I had to skip the second injection (which is put into an IV line) because my counts were low.  Still, I have been dropping tumor markers at a good rate.  I won't be allowed a PET scan until Sept. to see if it is really working...if then...per my insurance....although by then I will have run out of insurance.

Other side effects have been do-able.  I have lost my hair, although I'm told by  a lot of people that it often comes back before you finish, and that is only supposed to happen in 48 percent of the people on it.  I have increased neuropathy (in my case just numbness) in my hands and feet....always a problem.  I have increased lacrimation....in other words my eyes tear up and drip...which also causes a drippy nose.

I have nausea (which goes away pretty much after my week off and comes back again just before I get my second dose in a cycle), heart burn (which is handled by omeprozole--aka Prilosec), periodic hiccups, and burping (oh joy).  I also have severe cramping of some muscles, particularly my hands and jaw, which we are trying to figure out.

I also have lost my sense of taste, yet again, that starts coming back after my week off....only to lose it again.  The lack of taste and nausea has meant that I have been losing weight, which isn't a bad thing. It isn't a problem yet....until I put on the new pair of smaller pants I bought and discovered I can no longer wear them without a belt...That's OK.

I'd like to be able to do some more exercise...I am going to have to concentrate on going back to qi gong, which for lack of a better explanation is a form of Tai Chi...very slow, controlled movements which seem to do a lot of good for me....only I'm embarrassed to do them when Carlos is around.....so he really really does need to find a job and soon!

All in all....except for the severe sleepiness, I am able to do quite well on this.  I doubt I could get a regular job as I don't think I could handle it...with all the fatigue and weekly doctor's visits, but I have to say other than anoyances, I'm doing OK on this drug.

Down the Badger Hole

Ok...so I don't have any images of a rabbit hole.  Yesterday, I experienced a first....my blood counts were too low to get my second dose of Halaven in the second cycle.  I was stunned.  This had never happened before.

All sorts of odd feelings came rushing in....Will the cancer grow since I won't get any chemo until my oncologist sees me on April 17 and figures out a reduced dosage?  What does this mean for my overall survival?  Will a reduced dosage work? After all, the reduced dosage of Xeloda was only marginally better for my body and wasn't enough to control the cancer.

On top of it all, I obtained a copy of my last PET scan.....and the results were more dire than my oncologist had led me to believe.  All of this is downright scary.  However, I am trying to take a deep breath.  Since my first blood test indicated that the Halaven was working better than the oncologist anticipated, perhaps a reduced dosage will do as well.  Perhaps the fact that I got one cycle and one dose in will mean that I will have a residual effect while I am waiting to get the reduced dosage.

Other questions are in my head....can someone with extensive bone mets like I have manage to get to a level of stability or even better yet No Evidence of Disease again? Or am I fooling myself.  And in the mean time, what can I do to improve my health so that I am doing everything I can to make it work?  Hopefully, I will be able to start walking again...although I am very slow and the neuropathy (from previous drugs as well as Halaven) make my walking pretty dicey...it's like I have dropped feet.

I do know that I cannot be mired in the "what ifs."  However, I do recognize that I am having a period where it seems daunting indeed....That's one of the tough things about this disease.  It is in some ways unpredictable....but it does have one predictable thing....it can't be cured.  I will once again work to wrap my head around this....and not let the Cancer steal away my good days.....

Halaven and Hair...or Halavan and hair....or no hair at all

Wow.  What a surprise.  I suppose I shouldn't have been surprised.....but just 15 days after my first Halaven (some places it is spelled Halavan....eribulin) I hopped into the shower....put shampoo on my hand and started massaging my scalp....only to have a hand full of hair.  I was sort of shocked.

Wait a minute, you're probably thinking, she's shocked?  Well, yes.  For one thing, only 42% of patients using this drug lose their hair...and I had hoped that I was one of the 58% to keep it.  The other thing is that in the past on the other drugs which caused me to lose my hair (CAF, Taxol, Abraxane) it took longer.  

Don't get me wrong....I really don't mind being a hairless wonder...being bald has a lot of advantages....and I'm getting used to it by now.  But the process is always messy.  When we say that we have "handfulls" of hair, it isn't in hanks....it is in individual strands that have let go.  This is what I had after running my hand through my hair two days after the shower experience.  It's messy.  It's annoying....and I don't like hair as a condiment... I said something to my husband about it being time to shave my head.   "Can't you wait a couple of days?" Sigh....he has a hard time with it..so I waited ....until I got a hair wrapped around the head of my electric toothbrush.  That was the end.....

So..out popped the electric hairclippers and I buzzed away....Little stubs have been left, and I don't have anyone that I could ask to really do a close job (one of my daughter's high school friends who shaves his head did it for me the last time)....so I left it.  No big deal...except I am discovering something interesting. It appears that it all might not fall out.....I have hair stubble on the sides...but not a lot on top.  I wonder if I could pull off a comb-over???? NOT!

So the problem I have at present is that my wigs (cranial prosthesis per my prescription) are among the missing.  I can't figure out what I did with them...both the butchered one from 1994 which is really comfortable but unwearable in public since I took it to a hairdresser who charged me $60 to make something which has ragged ends and is basically a mess, and the one I bought at a local shop which was not personally fitted to me but looks presentable...and doesn't feel right after wearing it for a while.

I've looked and looked and I have no idea what I have done with them.  So I have been wearing scarves...It is odd because I get little crinks in my neck while tying them.....and on Easter my family (not my immediate family) asked me if I would tell their fortunes....

I'm tempted to take a trip to Connecticut and have the guy who fitted me in 1994 do it again.....I can't seem to find a place like that one here.  I must admit, it was sort of fun....I have a beef with a local salon here....as I was mischarged and they won't own up to it...but lied to my husband.   So...when I got notice that an appointment I had made 8 weeks ago (and had cancelled but they failed to do that) was coming up, I called once again to cancel....and they said "let me reschedule this for you."  It gave me great pleasure to say "No, that won't be necessary....I don't have any hair. "