burns and neuropathy pains on chemo

Poor thing, I can certainly relate to what you are going through.  After my first AC I ended up in the hospital with febrile neutropenia and cellulitis of my lumpectomy breast (which had a huge scar that was not 100% healed), onc waited an additional week (3 wks) for my next round and reduced the remaining three rounds a bit.  I then went on to develop a clot in my left lower leg from the AC - but continued on (on coumadin). Was to have 4 DD Taxols after that. Immediately after my first taxol I had BAD neuropathy in my feet and all my fingertips (toes were totally numb, felt like little cocktail sausages sticking off my feet).  She switched my last three doses to Taxotere (not as bad as taxol for neuropathy).  My neuropathy never got any worse throughout the remaining dosages of taxotere.  I did not qualify for the Abraxane as you must be allergic to Taxol for the ins. cos. to pay for it and my onc said Abraxane is just as bad re neuropathy as taxol.  I am triple negative so there was never any question on either my part or my onc's about quitting.  I wish you the best of luck and feel deeply for what you are going through.

Linda 

edited to add:  Finger tips are much better, but not totally back to norm.  Feet are fine, toes are still numb and feel funny.  My last chemo was Sept 09.

Nettie -

It's important that you remember, what happens to one of us, doesn't necessarily mean that it will to another, so what I went through was not really normal, but as my onc said, there's no telling who will suffer the side-effects and who will not - and to what extent.  I like to think that all the crap I went through was good, and that it was really destroying the beast inside of me.  I am 1000% better now and I am 5 months out of rads and almost 9 mos. out of chemo.  The small amount of neuropathy I still have does not hinder me at all other than my toes feeling like fat little sausages, lol! 

Want to point out that you have many more drugs to choose from than I as a triple neg, and my onc had a whole arsenal even for me!  If your onc is telling you there is nothing else to try, get yourself to another oncologist as fast as you can.  That is such bunk.  You can very easily be switched to Taxotere, as I was, as they are sister drugs - ask him why he is not switching you. 

I can't stress enough, if he is not giving you options, or not making you feel as though you can fight this - it's time to change to another doctor.  Please keep me posted.  I care.

Linda

Hello everyone, I dont post very often, however I want to share my story. I to had some neuropathy in my fingers and toes. My onc seemed to think that was quite normal.

However nearly 4 years later I'm left with finger that feel like I'm wearing gloves and tingly toes. two of my toes are compleatly numb - the others become very painful if I over do things. Though its have got much better over time.

 I can still linedance and walk.

Hopefully you to will get most of the feeling back.

In the mean time hang in there- your not alone

Stage 3  grade 3 - 4years past dx

Annettie -

A 13 mile bike trip!  Wow!  I couldn't do that if my life depended on it!  My hat is certainly off to you - that's wonderful.  You know, it's funny with this neuropathy thing - in reading all the different posts, some of us had pain with the tingling and numbness, and others did not.  I never had pain at all, but the numbness and tingling I have.  It has not worsened at all, but the toes still definitely feel numb and oftentimes "tight."  My fingertips are "just barely" numb, but I also had light carpal tunnel prior to the cancer, so it may just be that in my fingertips, but it doesn't (at least not yet!) stop me from typing all day - everyday, as I am a legal assistant to a law partner in a very busy firm.  I am glad your chemo stage is over and done with.  Want to wish you, and everyone else on this rotten journey we are on nothing but the best of outcomes with very limited side-effects!

Linda

One more thing Nettie....

Even though I cycled throughout chemo (12 DD total), it does compromise your lung function, and there is not one thing you can do about it.  But I was able to do distances at a slower pace than normal....35 miles being the longest, but a lot in the 20-25 mile range.

Much as it hurt to admit this, I did have to realize that being last in the group is just fine until I fully recover.  In fact, I did a training ride with a cycling club at the end of March.  But I knew I just didn't have it for the next one.  I do now.

This is great news as I am planning to do the 70 mile course of LIVESTRONG in two weeks time.  Still not very fast, but fast enough to finish.  That is my goal. - Claire

Actually, not as much of an incentive as being featured in an online article with Doug Ullman who is President and CEO of LIVESTRONG!!!  They will have to drag me off that course.  Reminder to stock up on anti-bonk remedies.

Lung capacity will come with healing.  I found I had a ton more something like six weeks out from last Taxol and it is still coming up, even with radiation.

All my nails look just fine with the exception of my big toenails.  I am assuming they will look just fine in another couple of months as I lost one a couple of years ago cycling, and it took that amount of time to regrow.  The regrowth point is the last AC cycle, as my others looked fine during Taxol.

They did a MUGA scan on me prior to AC, and my score was 68.  I remember the (much younger) tech saying he wished he had my heart function.  My oncologist said the same thing and also asked if I could share some of my HDL (88) with him.

In terms of what I am going to do, and I would suggest you do some version of the same, is I will have a complete physical about 4 months from now.  Then I will know where I stand with everything (such as HDL/LDL) and of course a mammogram.  My oncologist said "four months" as a recovery time, so that is what I will believe.

Then I will see where everything is and move forward from there.  I am hoping no meds other than the Arimidex which I started a month ago.  I also need to get about 8 more pounds off.

I have a check point in about a month's time with oncology team and will know liver function then.  I would assume near normal by now.

I would sum up my experiment to see if I could continue to work out as being a success.  The big factor is that I really did hit the ground running.  I still have had to go through the recovery process, but starting at a much better place.  I kept my core strength which was very important to me.  I was able to work.  Radiation has been no more than a time suck.

Today, I am racing around getting stuff done.  The sun is out and I am waiting for a friend to call once she finishes her dance class.  Then we will do a good ride, not a training ride, but something fun.

Knowing what I know now, I would not have gone for the total axillary dissection either.  I had one grossly positive lymph node, but no others were affected.  I was extremely fortunate.  In hindsight, I wish they could have done something like 8-10 and I would have been thrilled to do radiation in the area.  But hindsight is 20/20 and I think the impact on my QoL is minimal.  Even the surgeon told my friend that she thought I had "extensive involvement" as I was being wheeled out of the OR.  She was ecstatic when she could tell me it was only one!!!

My total cholesterol was high too.  But the ratio of HDL to total is also very important.  So important to know both.

I wouldn't sweat the protein.  Our bodies need tons to rebuild during chemo.  It was what kept my body energy stable as I just didn't have reserves.  I need less now.  I still am avoiding supplements other than a multi and the study I am participating in.  But bought out the produce stand yesterday.

I was thinking through your post as I cycled....did about 20 miles today including a panoramic view of the Puget Sound with 270 degree view of mountains and water, as the sun finally came out.

First thing is that your lungs can take a bit of radiation.  (I am getting some to heart and lungs as on left side.)  My mother died of lung cancer (smoking "just a little bit" for 50 years).  I learned then that typically lung cancer patients are so asymptomatic that their cancers most often aren't detected until too late.  So you can function just fine if you lose a bit of capactiy.

The other thing is that you aren't healed yet.  I don't know what lung tissue looks like, but I do know it took about six weeks for me to notice that I had more stamina and ability to do hills.  This is about the same time I noticed my skin was healing, and things were better "down there" when I had some "action" with Main Squeeze.  I also had more energy for that activity 

I am assuming this is all connected.  Looking at my skin, I can tell it is still healing, and I assume my body is healing in places I can't see.

I have not found radiation to be difficult.  I have two more to go.  I didn't want to push it too much this weekend as don't have quite as much energy as a week ago, but not to a degree that it has bothered me at all.

One of the ladies on the Stage III fitness thread had heart issues, which seem to have resolved themselves, so you might want to check that thread too.

Again, this is a case of getting through, bringing your body into balance and letting it heal, then reassessing what else needs to be done.  I think one of your visits should be with a cardiologist so you get all that sorted out.

BTW - I had a different experience at the end of chemo.  I was sooooooo done that I went and worked on my career.  Then it took my body a bit of time to catch up with my brain.  I had worked out the "go forward" plan and I knew where I would end up.  So I took on more consulting.  Tough on me, but it got me moving forward into my new life.

Nettie....

Before you go nuts about your cholesterol readings, I would suggest that you wait for everything to stabelize.  Out of whack cholesterol is one of the side effects of some of the chemo drugs.  I would go back to my oncologist and ask for direction in this matter.  Their job is to know how long it takes for everything to get back to normal.  I have a three month check coming up in about 3 weeks time.

My oncologist left me with the expectation of "four months" from last chemo, and that is what I am using as a general guideline.

Your body has just gone through a major trauma, and it takes some time to recover.  I agree that your triglycerides are high, but again, don't stress it until things settle down.

Right now, you need to be focusing on doing things that help your body stay strong: healthy food, exercise, enough sleep.  Boring but basic stuff.

I am down to the wire with radiation.  No more than a bit tired and a bit red and sore in the area.  That is, I didn't want to do any long distances over the weekend, but will do the 45 mile course of the Flying Wheels on Saturday as need that distance to be ready for LIVESTRONG.

They measure you very precisely to maximize radiation where needed and minimize exposure to other areas.  I would mention the heart issues and I am sure your radiation oncologist will know how to address.  That's their job.  Mine offered to make sure I had the salves etc for LIVESTRONG, but don't think I will need.  Now, I am more worried about the back of my neck and ears (sunburn) than radiation soreness.

The other question: general business and also market research as I have worked in both arenas.  In fact, I found some of the work issues I faced in the past month far more demanding than radiation.  One thing I did a couple of months ago is work with a career coach as knew I would be having some decisions coming up.  It was well worth the investment.

I did do LIVESTRONG, but downsized my ride to 45 miles as was rainy, cold, miserable and slippery out there.  To the point that some riders were given space blankets at the rest stops.  I didn't feel comfortable riding down Cougar Mountain on a slick road.  They couldn't believe I was doing this just 12 days after ending radiation.

Feel just great this week.  I admit to being tired last week.  I really thought I was past the fatigue, so did a 45 mile ride that Saturday followed by an easy fun ride on Sunday (tour of three rose gardens, but mostly flat cycling).  I crashed on Tuesday.  (Well, anyone who thinks they can do a 45 mile ride just four days after ending radiation shouldn't be surprised if this happens.)

Anyway, the weather was so foul on Sunday that a friend said "good, you're still alive!" when I called her the following day.

I am so confident (cocky?) that I am just fine that I signed up to do the Seattle-to-Portland which is 202 miles over 2 days.  I think I will have the stamina by then.  I certainly won't have any butt flab.

Anyway, glad I helped.  You do need to get checked out, but I would give it three months after your final chemo.  That is the cycle I am on for the studies I am participating in.  I think they are doing this for good reason.  Which is that they will know by then to what extent things have settled down.

Good luck.  BTW - the most glorious sunshine here today.  A friend is coming over for a girls night in, and the view across the Puget Sound is breathtaking.  Life is great.