Starting Chemo, November 2013 Group

its hand foot disease....sucks....my heels are split open...fingertips are like hot dogs in a microwave! its the tax...LOTS OF LOTION, Neosporin and get some white cotton socks...gloves...slather on and KEEP OUT OF WATER!!! for the pain...u can use the elma or lidocaine!!! I feel ya!!

I'm voting with Paulette on Taxotere (any taxane) being the culprit with hand/foot syndrome.  I'm halfway through Taxol and have the same thing, but only on my hands.  They are peeling SO BADLY.  Lotion improves the appearance, but it doesn't really make the actual peeling any better.  It's getting so I really shouldn't do any food prep, unless, of course, the family would like to eat pieces of my hands.  Shaved "parmesan" anyone?    (Oddly, I have no symptoms on my feet.  I don't know if it's made a difference, but I always have my feet coated in Aquafor and in wool socks, showers being the only exception.)  

@Audra -- I wasn't a health nut nor was a type A personality. I seriously think it's just colossal bad luck. A crap shoot. But yeah, probably some stress, as well.

I start taxotere on Thursday so y'all are really giving me something to look forward to, haha.  So keeping hands and feet well moisturized and protected does help? I can do that.

Mine really just started peeling and the red heel thing on taxotere #4...I don't have aquafor but I will slather on the lotion I have...I am keeping them elevated and airing them today, covering them at night while in sheets as I was afraid they would open when touching the sheets...my fingertips are peely and feel awful...

I want my port out and I'm ready to be done.  How about you all?

Thanks, Bec. I'll go ahead and get prepared with the Aquafor and gloves and such. Wouldn't you  know it: I'm one of those strange people who feels compelled to wash my hands eleventy thousand times per day. Guess I better get a hold on that urge for a while at least, since they already tend to get a bit chapped and icky feeling in the winter because of all that washing.

Audra: Omg yes I want my port out and to be done with all this!  Our "grass man" (the guy who mows our grass) showed up today unexpectedly, so I had to go out into the backyard and clean up all the dogs' chew toys and tennis balls and the rocks they'd dug up, and get our lawn chairs out of the way, etc. By the time I was done I was exhausted, breathless, and heart beating a million miles a minute (due to low hemoglobin/RBC.) A big change from a few months ago!  (How funny too, that the grass that was mowed today is currently being covered by a light dusting of snow!)

Funny though that I *have* finally gotten to the point I don't think about my port a whole lot. I guess I've gotten used to it. 

Question: After AC, I always experienced some soreness/swelling/tenderness not just around my port, but around my bmx scar areas and even on the back of my neck. Should I expect this with the taxotere/cytoxan combo also, or was that an adriamycin thing?

Ellen - it is good to hear from you.  I hope all is well at the new job.

Jab, I am glad the dog bite turned out to be not such a big deal for you.

Audra and Bec, those hand/foot SEs sound nasty!  I only had one taxol treatment so far, and i don't have any of those yet.  When does it happen, after the 2nd or 3rd? The tips of my fingers are dry and callous and I have been moisturizing them.  But that started with the AC.  I will get ready with moisturizers.

What is the difference between taxol and taxotere?  They sound like they have the same side effects. 

Phebe, can you drink with a straw?  That might help,with the sores.  You can make smoothies.  When my kids had their wisdom teeth out they felt better drinking shakes and smoothies with a straw.

I received the results of my BRAC genetic test today; no mutation identified for me.  I guess that is good and I know I didn't pass anything on to my girls, but I was searching for,a reason why this happened to me and I still don't have one.  Just plain old random bad luck that I have no control over.  I still,have a hard time accepting that being the control person I am.  I really need to learn how to lower my stress over things I can't control.

It is so cold here.  -5 tonight.  But no snow for us,  it is coastal.

I hope you all feel better,

thanks amazonwarrior for sharing the info. Now even i will be more careful about green tea, although i didnot have it much during chemo.

what about folic acid supplements, will it fuel the cancer cells too?

yes, smrlvr, we are on the same schedule. did u do dose dense acs too?

regarding the itching sensation due to taxol, i am using lots of oil for the skin..olive/ almond/ coconut. It works better than any lotion or cream. and one tablet allegra at night. all this is because of allergic reaction to taxol.

i see most of you are hormonal positive ..which is good. me battling the dreaded triple negative cancer..what bad luck!

I think I picked up my first bug from work. Spent most of the night in the bathroom being explosively sick. Not even going to try to blame it on chemo since the last one was 16 days ago.

Oh, I really don't like the sound of the taxotere SEs. I get dry, peeling hands and split fingers anyway in the winter, so it sounds like I may be in for a rough time. One more AC on Monday then on to taxotere for 4 rounds. Yuck.

For everyone looking for a reason we got so 'lucky', I truly believe it's just sheer, random bad luck. It really doesn't seem like there is anything that causes it (lacking a positive BRCA that is). We just drew the short straw, and we're probably much better off not even wondering why. I stopped trying to guess why when I realized it took mental energy and caused stress that I couldn't afford. I just got it, and now I need to only work on the treatment.

Smrlvr, congrats on the BRCA. That was really my one true fear, that I may have given this monster to one of my precious girls. To me, being negative means everything else is gravy.

Ellen, glad your job is going so well. Just hearing about those stairs makes me tired, although I do walk an awful lot at work.

About antioxidants, if we only get them from foods, not supplements, can we really consume enough to make a difference? How many cups of tea would you have to drink to interfere with chemo? I don't think I can stop with the tea. It's one of the few things that tastes right for a couple of days after the infusion. Does taxotere mess with your tastes like AC does?

Lisa, good luck with the taxotere tomorrow.

Bec, I've worn cotton gloves to bed in the winter, but it seems that a lot of the lotion/cream gets rubbed off while trying to get them on, so now I use a pair of smaller socks. It's easy and it does help some, at least with my winter heat cracked skin, so it may help with the taxol hand thing too. I've got this tube of waxy stuff called Surgeon's Skin Secret (from amazon) that I coat my hands with, and the heat inside the socks melts it and lets it soak in a bit. Feels great in the morning. 

wallymama - taxotere completely zapped my taste buds and appetite but it looks like not everyone has that problem as severely.  Makes eating and pooping a challenge.  Hope you don't!

I have abit of fever. Going to a clinic to see a doctor. I'm supposed to ask for Ensure and the nurses will ntroduce me to it. I got sore throat so they said that will help me to get nutrients. I wish all my symptoms will go away. It's been day 8 since I got this infusion. Taxotere and Herceptin. I'm taking all kinds of medication and I'm sick of it. I can't eat right. I'm just venting and I will scream today as I go out. To let out my frustration lol

Wallymama- Hope you are feeling better and can get rehydrated...that is horrid to get sick on top of everything else!

Kindajojo-  What an awesome idea..!  I knew about icing during infusion and my MO said no to that, but now that I have these red hot feet that hurt I hadn't thought of icing them at home!  I will try it asap!  I have them elevated on a pillow and in lotion with my husbands larger socks on...

I forget who asked but the taxotere does ruin taste! Maybe day 10-14 or so it gets almost to normal-

I also had a rash from 1st infusion of taxotere, on my hands and hips...it was weird and like a rugburn almost, took the whole 3 weeks for it to go away.  The peeling of fingertips started after the 3rd infusion, and the foot burning and hot redness was just from this 4th infusion...I have a friend that had a severe allergic reaction the first 2 treatments of it and they stopped drip and gave Benadryl and something else then started it again, but the 2 one they changed from the taxotere...that is rare but they watch you closely the first couple of infusions...so I feel fortunate NOT to have had that reaction at least.

Inks- go get em today!  Hope you have no problems at all!

Jab- the taxotere gave me nausea the first 3 or 4 days, but was controlled well with Phenergan every 6 hours, I set my alarm in the night as if I did not would wake up nauseous....I ate little tiny meals 5-6 x /day and had trouble drinking enough so did popsicles, soup, to make my fluid number...I am on day 6 now and just have heartburn which started after infusion #3...

My cousins wife is taking Taxol which is similar to Taxotere and I think not as harsh, as she says it just makes her tired that day and then she is fine all week...She is working and doing normal activities...so it seems to be easier to tolerate.

Lisa- Wishing you well today and hoping you breeze through the taxotere!

Bluegrass- Hoping you are feeling better today !

Quirky- How are you doing?  Except for my beet red hot feet I'm pretty OK...so glad to be done...

I don't know why some of us get Taxol and some get Taxotere.  From our profiles, it seems like maybe there's a small pattern of Cytoxen-Taxotere and AC-Taxol?

I've had no stomach/poop issues with Taxol at all.  My taste buds seem muted for a few days, but nothing like with AC.  I feel wiped out from it starting about day 3, and that lasts about 3 days w/o Neulasta and 6 days with.  I did Neulasta after Taxol #1 and my WBC count doubled, so I didn't need it for #2.  Yesterday's labs (before #3 today) were so borderline that my NP said if I don't do Neulasta this time, I'll probably end up so bad off in terms of my WBCs that I'd have to delay my last treatment.  Needless to say, I ordered the shot and it will be delivered today!  My eyebrows and lashes have thinned more since I started Taxol, but they're not entirely gone.  Hair on my legs is starting to grow back -- I can feel it when I rub my calves together, but it will be ages before I need to shave.  I think the hair on my head might be growing ever so slightly too, but that may just be wishful thinking.  

The worst SE I've had so far, and this didn't start until after Taxol #2, is the pain in my thumbs and first two fingers.  It feels like I hammered each of them.  Any pressure hurts -- gripping things like a pencil, typing a text on my slide-out phone's keyboard, peeling a sticker off an apple, etc.  If it never gets better (a possibility), I could live with it like this, but not a lot worse than this.  We decided at my pre-chemo appt. yesterday to stick with my dose-dense schedule and dosage and hope for the best.  We also decided to stick with the premeds even though I did fine the first two treatments.  I'm bummed that it makes things take so much longer, but the steroid might help with Neulasta SEs.  

Smrlvr, I could have written the paragraph you wrote about BRCA.  I know the most important thing is that we didn't pass it on to our kids.  And even though I feel like I accept what's going on, I still have latent control issues and wish there was some logic to why it happened. 

JAB, I have lesions on my spleen that seemed to worry no one ("multiple hypodensities within the spleen, likely cycts, hemangioma, or noncalcified granulomas").  

Phebe, yay for you for being able to take the ice and cold packs!  I'm too much of a wimp for that.  

Wallymama and Ellen, I love reading your posts about being back at work. They're like getting post cards from a far-off wonderful place!   

Virginia, how are you doing?

Good vibes to everyone today for feeling better and getting through this! 

I also have the hemangioma on the liver. They are apparently quite common.

ok all that had lesions or hemangiomas-

mine were listed as hypoechoic areas....they did not say what they were....did all of yours say hemangiomas or cyst or any say hypoechoic??

hi all ...hoping to get to computer to feel like I belong and can say more than one run on paragraph! stay ahead of the hand foot stuff! I have major splits in my fingers and heels...keep em moisturizer and put someone else on cleaning and food prep. some foods make it worse touching them like ..potatoes ...some veggies...use disposable gloves and you can lather hands w lotion to do double duty! avoid water...esp hot...also cold...dont touch cold stuff , ice , etc w/o protection .