February 2011 chemo pals

I spent the day at a Breast Cancer/complementary medicine conference and came out thinking that it is a good idea to take L-Carnitine supplements to counteract anthracycline cardiotoxicity.  Also L-Glutamine and B-6 are recommended during taxol to deal with, and hopefully eliminate neuropathy.  I'm wondering if anyone else on this board uses these supplements?

MAMAOFTWO - I do take the B6 and L-Carnitine.  Also B12 and Biotin.  I'm seeing a Complementary Medicine doctor next week.  I'll post afterward to let everyone know what she says.    I asked my onc about supplements and he said that wasn't his area of expertise and referred me to a different doctor.  I really thought that was cool.  I like it when  doctors admit that they don't know everything...

CharlottesMama, Don't know if anyone really answered your question about your toes and hands bothering you this last go on AC, but I'm on AC too, and right from the start my feet were absolutely killing me, felt like I was walking on glass, and even at rest they bothered me.  My hands did not, tho.  Anyhow, I suspect it's just the chemo, but since you're going to talk to your cancer doc anyway, he'll know what causes that and what it is.  But I never did find anybody else who had sore feet like me doing AC.  The pain medicine I take for bad body aches took care of it, but sometimes not until the medicine built up in my system towards the end of the day.  Oh, and I also do feel tingling in my wrists usually, a neuropathy thing, so could be that's what it is.  And towards the end of the two weeks between each AC, it always improved.  GG

mamaoftwo - I have used B6, L-Glutamine and L Acetyl Carnitine to ward off neuropathy.  I have not experienced any yet and I have finished 3 of 6 TCH.  I will never know if it works or I was just one of those people who wouldn't get it,  but I wanted to do all I could to prevent it.  Some of the folks who get it have it permanently, including my mother.  She was treated with chemo drugs for a rare degenerative neuromuscular disease, so her neuropathy was a combination of 2 years of chemo and the disease itself.  I had read about using those supplements on this website and my onc had no problems with any of those items.

mamaoftwo - 50mg of B6(1 capsule), 30 g of L Glutamine (10 g of powder mixed in beverage 3xday, I found hot tea to be the best for me) and 500 mg of L Acetyl Carnitine (1 capsule).  I do this during chemo and sometimes fall off in the in-between times, mostly because I forget!  I think it is important for me to be diligent as infusions go on because of the cumulative nature of the chemo drugs.  I did find the L-Glutamine powder at my local health food store, but had not checked GNC for it.

ruffolo - you are not doing anything wrong, it is all difficult.  We have ups and downs, good days and bad days, don't be too hard on yourself.  Your 3 year-old will not remember this time, and your DH is probably like most, uncertain of what to do for you.  Men like to "fix" things - they often are at a loss when they can't.  You are about to start something new in the process of becoming healthy - switching from one chemo protocal to another - it is the unknown for you, of course you are nervous!  Take it one day at a time, enjoy the yoga on Wednesday, and try not to worry!

Ruffalo, I am right there with you. Seems like Sundays after my Thur treatments are the worst for me. I can't move much and my house is trashed and my eight year old is telling me what a bad mother I am b/c I won't take him to Subway...and I look in the mirror and just burst into tears...You are NOT alone! We will all get through this thing!

I was diagnosed mid Dec 2010 and mentally was doing great until about 2-3 weeks ago.  Too many SE from Taxotere - I never knew what new SE each day could bring.  Now I'm on AC and I've been dizzy and weak and this AM after brushing my teeth I spit up a few mouthfuls of blood.  I think I feel down mentally because I'm down physically.  I don't want to go to work.  I have one more AC treatment to go and I keep telling myself that I'll start feeling better after that.

Oh my gracious!  I just noticed that my siggy with my BC stats says that I have mets.  I don't.

Sheesh...

So who are my chemo buddies this week? 

Fuzzy - are you doing ok?

Charlottesmama - how are you doing?

Chemo twins - you guys all hanging in there ok?

The weater here is supposed to be nice tomorrow so I'm planning to walk outside.  Today it was too windy.  My wig may have ended up in Utah!  The good news?  I've lost about 12lbs since my last round of TCH on 3/17.    And the woman who comes to the chemo room to paint our nails during infusion will be there this time.  I only see her every other infusion because she comes in every other week.

Ruffolo and others experiencing sadness at this point in your chemo:

Girls, when I did AC Chemo #3, I cried for DAYS.  I felt like I was out of my mind, my logic went out the window, my old back injury got much worse, and I just wanted to stop treatment and go to surgery.  Of course, that's my MO, to quit, plus chemo just crashes through all normacly like a Stealth B2 bomber.  Doc gave me a week off to get over myself.  I realized after a few good nights' sleep and some nice long naps, plus checking with husband about my confused thinking, noting where I left out lots of proper decision-making info, and finally understanding how serious my cancer was, I got back in line for my treatments, will follow doc's orders from here out with few exceptions. 

I am living proof that after two weeks off and then another week given by my doc, that third week away from chemo, I finally "came to," and I believe it's true chemo is cumulative, that is, takes longer and longer to get over it, and I also believe we do not sleep or rest very well at all thru chemo, which conspires to make a mess of us.  In addition, whatever you are prone to worry about, quit it, like me worrying that I need surgery NOW and looking endlessly for proofs thereof, or like Ruffolo misunderstands husband becoming worn by side effects (like static on a TV)... he ain't gonna throw the TV out the window, and like Jenn's child freaking out and insulting good Mom makes Mom burst into tears when YOU REALLY ARE SICK EXHAUSTED. 

It's the chemo, ladies, and of course the basic concern about not only suffering from the cure, but also the cancer itself visiting upon us for no good reason, we are big cats stuck in a zoo cage, pacing the cement floor, back and forth, trapped with no sure rescue in sight.  But as I said, I am living proof that once we're done and off all chemo for a few weeks, we will be much more content, accepting, and willing to continue.  Early on I got so scared of the looks of death, I could not have it as part of my thinking, so I asked the Good Shepherd to take that thing away from me, and away it went.  Putting it on a shelf, same thing.  Dealing with it later, setting it aside, whatever works to banish it from your mind, do that and it will leave you alone.  You can deal with it some other time.  And anything else that is driving you up a wall, quit it too, find something else to do.

By the by, when my feet were hurting, I got pain meds from doc as I said, but also sitting on side of tub and running coolish water over my feet made it stop, too.  Felt sooooo good.  I see doc day after tomorrow, and begin again with chemo.  I will remember this extra week off and KNOW that it's the chemo, it's the chemo, it's the gosh-dang chemo, but when it brings an IDC 85 percent chance of living all the way up to 97 percent, or when it brings aspects of IBC 40 percent up to 60 percent, hey, sign me up. GG

Well..... I haven't posted in a while but I do read all your posts almost daily.

pejkug3 - I am your chemo buddy this week,  I have TCH #3 on thursday.  Good Luck to you!

sukie10 - Congrats on your progress - that is wonderful!

About Ups and Downs - Like everyone else, I do have my meltdowns although I have to say they are not very often.  I just keep on living and the time is flying by.  I personally think taking Ativan an hour before bed is working wonders.  I have had chronic sleep deprivation for the past 10 years and now I am sleeping like a baby most nights.  Plus I think it does help with moods and coping.

For whatever reason, my SEs after TCH#2 were a TINY FRACTION of what they were after the first treatment.  If only I knew why that was for certain, I'd share it with the world.  But the changes I had made were 1. accidentally taking my steroid and anti-nausea for an extra day each before I remembered to stop and 2. taking Claritin and  pepsid per recommendations from this board,  My bone pain was almost non-existant and I do get the neulasta shot.  The only pain meds I used were OTC Tylenol because I just didn't feel like I needed any of the stronger stuff.  I played tennis 4-5 times since my last chemo and even did a fairly grueling 2.5 mile hike up to some falls here in So Cal.  I don't have the energy I typically have but boy, I really can't complain and only hope #3 is as easy as #2.

I see BC as an opportunity to improve my relationship with God, my family and even myself.  I have been amazed at the show of support from my friends and inspired by others with BC.  I just decided to captain a team for the Avon Walk and picked a date/location that coincides with the completion of my treatment, so something else to focus on and be grateful for!!!! 

Keep the faith!!!!

Alison 

Taxotere Day 6 Cycle 1/3 ( FEC 3 rounds completed)

Just a few comments...Taxotere FOR ME ( don't want to scare anyone) has been brutal . Day 3,4,5 and (so far 6) have been a nightmare. Aside from feeling so totally miserable I wish someone would knock me over the head so I could sleep through it all the lower leg pains have been terrible. Tylenol # 3 allows me some relief for about 2 hours but haven't slept much in days. I may start stronger pain killers if it doesn't improve today. Toenails have hurt since Day 3.Headaches and extreme fatigue, (walking to the kitchen is almost more than I can manage as my legs are so weak).Well, that's my whine. Just wondering if anyone else is having a bad time on taxotere? I thought FEC was pretty bad...but this has been much worse

Yes Emily, Taxotere is brutal.  Here is the good news - once you figure out how to manage your SE I found subsequent tx to be easier,  Numbers 2 & 3 were better and when you get to those you will be done!  Don't hesitate to use stronger pain meds, it will help you.  Also days 3-5 should be your worst.  When I woke up on day 7 I was a new person.  Unfortunately for you this is your first Tax but not first chemo so some of what you are feeling is cumulative on top of your FEC.  I did not have as bad a headache on subsequent tx but also remember that some of your anti-nausea contributes to the headache. Fabulous - an SE of the stuff you are taking for SE's.  Do you have Ativan?  It will relieve nausea and help you sleep.  Hell, take it during the day!  Are you on a tapering steroid dose?  That may also be interfering with sleep. 

I had Tax#3 last Thurs. and have developed a rash all over.  I had to go to the onc yesterday because they wanted to see it.  They think it could be a reaction to either the antibiotic I was taking for the UTI courtesy of Tax#2 or I am allergic to the Tax itself.  I have to treat the rash with Zyrtec, Benadryl and topical steroid.  Before the next tx I have to start steroids before, during and after as many of the ladies already do.  My onc doesn't like to do that unless it is necessary.  If I get the rash again I have to switch to something else for the last two tx.  Oh well, it is always something, right?

Mwasi - Make sure to try and take your steroid with food if you can. You may also experience some sleeplessness and hyperactivity with the steroids.  What do your T and C stand for?  I am Taxotere and Carboplatin (and Herceptin).  Are you having tx every 3 weeks?  If that is your TC you will lose your hair right around the 2nd tx if you are every three weeks.  You will probably have either constipation or diarrhea, or both.  Some people try to pre-med the constipation by taking a laxative or stool softener before tx.  I would be careful with that because you don't yet know which thing you might experience and a laxative with diarrhea would not be fun. You may experience headaches and fatigue, but if you are medicated correctly you probably will not have too many problems with nausea.  You will most likely have taste changes and possibly loss of appetite.  It is important to try to manage all of these SE with the meds given to you by your onc, and over-the-counter items to manage the constipation/diarrhea, headache, etc. You may experience neuropathy, some folks take B6, L-Glutamine and L Acetyl Carnitine to ward it off but check with your onc before you do that.  Eat as much protein as you can, although sometimes you just have to eat what sounds good at the time!  You will most likely become increasingly fatigued, it is important to sleep as much as you can.  Use either a sleeping aid if your onc prescribes one or Ativan (anti-nausea) at night if you are given that.  If you are given injections of Neulasta, many of us have found taking a Claritin an hour before the injection and continuing for several days afterward is helpful with bone aching, but again check with your onc before you do this.  You may also experience some of that if your T is Taxotere.  The onc/chemo nurses will likely cover a lot of this with you as well.  Also, it is important to track your SE's and inform your onc of anything unusual.  There is an SE chart on The American Cancer Society's website that I use and it is helpful.

I know this sounds intimidating - everyone is different and experiences SE differently.  Many of us felt that the first tx was the worst and as you go on you will learn how you react and adjust accordingly.  You may also find that your anticipation of the first tx is worse than the actual thing.  Some good news is you only have to have 4 tx so some of the cumulative issues may not be as bad for you.  You can do this!  If you have specific questions ask and someone on these boards will answer you!