Starting Chemo May 2008

Rock - When I get my treatment here in Alberta - they always put a warm pad on your hand and arm.  Wasn't really sure why.  I apparently had a rolling or spasiming vein.  I never new my veins were so active!  WIth all that sasming and rolling you'd think it would be good for a lost pound or 2!

Kristy - I didn't get roids - amazingly as the chemo or I also think the anti-nausea drugs they give us make my bowel movements like giving birth to a cement elephant!  Lost 7 lbs in one day!  I have a sore on the front side it was like a boil - I called the onc nurse as I had been slathering it with polysporin - she said I should let it dry out - But it's been a week - and I kind of walk like I have been riding a horse for a week!  Then she sugeested I see my family doctor.  Yeah I 'm a little tired of the non-help I've been getting as I have never gone through this before - I really don't know whats important - what is irrelevant - to me everything is relevant going through this!

Sue

Red Deer Ab 

Before I go on to the other page, I wanna say that I will never hear "America" the same way again.  Eddie, I needed that.  ("Oh THERE are days when ALL things suck, our meltdowns can be rooooooough...") 

Are we a bunch of wonderful cornballs or what?  And Revkat, thank you for noticing that our May group is "special." (And yes, possibly "special" in that "Little Johny is ...'special,' isn't he?" way!)

 But please... tell me.... finishing? What is that like? (By any chance did you have Taxol? Will I ever be able to put my feet on the floor again without shooting pain? Is it true what they say about water retention/weight gain?)

SuePeet -- a spasming vein -- is that as exciting as it sounds?  That combined with a boil, and a 7 lb BM, -- why, sister, I believe you have hit the Trifecta of Chemo Side Effects!  (I AM sympathetic. That's not very helpful, I realize, but I am sympathetic.)

Rock, I thank you from the bottom of my.....um, I thank you.  Sorry you were not Independent yesterday.  Any chance you were independently wealthy?  An independent thinker?

Hope your feet allow you movement today.

Love,

Sue 

P.S. Here I am (was?) with hair...) 

Randie - owie owie owie! My goodness, I don't know how you keep your sense of humor through this!  I hope you are getting some much deserved relief.

Rock - so sorry to see you continue to have foot trouble!  I wish I could come up with some miracle cure and make all the booboo's go away (Yeah, I'm a mom...can't help it).

I'm waving my magic "mom wand" and hoping to obliterate all the SE's today.  Ever one of you deserves a day free of ....well...CRAP!

All this talk of Crocs....I went out and got myself a pair yesterday.  Got a pair of MaryJanes and boy they are comfy.  I may have to have a second pair on hand.

Everyone take it easy today.  Going to go Google Chillows.  These hot flashes are driving me nuts at night.

~Adrienne

Linda -- THANK YOU. I am on Neulasta. I have only skimmed it (will read more carefully later) but oddly, have already found it reassuring to have it recognized as something "intensely painful." Because it is. I keep trying to pretend it isn't but it is.  More than the pain, though, is the fact that I live alone (happily) and am without someone to "fetch" (not just groceries, but ointment, glass of water, another ice pack, new box of Kleenex). Last night, I told myself that it was okay if I had to crawl. That while it wasn't very dignified, it was okay.  (Even sitting with my feet down is really painful.  The good news is that the joint pain is completely overshadowed by the feet pain. AND I do have a lot of good reusable icepacks on hand, oddly enough. And bandaids, lotions, antibiotics.)

If I had known it was going to be like this, I would have re-organized my apartment (e.g., put rugs down everywhere, reorganized my nightstand and the area around my couch, stocked up on food, bought a chair for the bathtub, bought a cooler to keep by the bed with my icepacks, stocked up on cheapo footy-socks) and otherwise made arrangements.  Right now, I ice my feet and then I use the 20 minutes or so of relief to do what I need to do. On Monday, if it is still bad, I'll look into Access-A-Ride and maybe a home health aide or housekeeper in case I'm still laid up a week from now. It's all about planning.  (People who live with this all the time -- can you imagine? I'm stil damned lucky.)

Hopefully, I'll get on top of this, but in the meantime, well, it's been interesting!!!  Again, thank you for sending the link.  And Adrienne, Sue, everyone, I feel like such a baby but I appreciate your comfort a LOT.  

Re: Hot flashes.  I prob said this before, but I used to have night sweats most nights of the week. Post-acupuncture? MAYBE three.  I am not normally crunchy granola girl, but you might wanna give it a shot.

Sue -- so what you're saying is, you were a gorgeous long-legged woman even before you started wearing a fedora, no?  I am independent-MINDED. 

Roc,

Here is a link Otter had posted about HFS.

http://www.chemocare.com/managing/handfoot_syndrome.asp

If you were jumping rope I can understand why you got it so bad. Are you taking Vitamin B6? Don't remember what oncology website I read it on but remember seeing most Dr's. Recommend 100-150 mg. I have been taking 100mg.

After my 1^st treatment I got it in my big toes only (thank GOD you can walk without applying pressure on the toes) and my finger tips. Got worse in hands, so bad that I couldn't open a bottle of water, hold a pen etc. I had originally described as being bright red, feeling like the beginning of a blister even though you couldn't see a blister; it must have been because skin did peel right before next treatment.

I had read of a study done in France.

http://www.cancer.gov/clinicaltrials/results/frozen-glove0805 and

http://professional.cancerconsultants.com/oncology_supportive_care_news.aspx?id=34612

What I do:

Applied Udderly Smooth Udder Cream a few times a day, really thick at bed time then covered with soaks.

Once finding out about Udderly Smooth Hand and Foot Cream made for HFS, I started using that. Couldn't find locally not available yet so ordered directly from Redex.

Already mentioned above, B6 100mg.

During 2^nd infusion I covered my feet in ice pack and played with ice pack with my hands.

This time no HFS symptoms. Neuropathy instead. A few times at base line of the balls of my feet they burned. Felt like they were on fire. I then rubbed on cream, and elevated. Never lasted more then 15 minutes. No problems with hands this time.

Hope you find some relief.

Enjoy the day, Karin

Rock,

After thought. I haven't heard you complain about your hands.  Have you considered walking around like this?

Are those crocs on her feet?

Enjoy the day, Karin

OMG, I am alternating between laughing and cringing while reading this thread.  I'm glad we all know each other--if anybody new dropped in (besides Sueper13 of course), they'd be scared away in a heartbeat.

Linda, good find!  I'm referring to the article about the possibility of Neulasta causing HFS.  I had read a bunch of papers on HFS, and mostly they said it was associated with capacitabine or the type of doxorubicin (Adriamycin) that's bound to liposomes.  The article you cited said this:  "It is notable that patients receiving pegylated chemotherapy such as liposomal doxorubicin are also at higher risk for developing HFS."

So, there is a chance that our foot problems are caused by Neulasta and not by our chemo.  Hmmm.... what a dilemma!  I guess that argues in favor of Neupogen, which doesn't have the PEG so it wouldn't cause the problem.  One more case of "not enough data" to know for sure.

Rock, it sounds like you have it (HFS) much worse than I did.  I was soooo lucky that my feet were only sore on the sides of my heels and instep, and not on the walking surfaces.  Also, I never got sore spots on my hands, except for a small patch on one palm that, again, was right along the edge of my palm and not on the palm itself.  That one didn't appear until after Taxotere/Cytoxan (and Neulasta) #4.  I've been wearing my fake Crocs (Airwalks) a lot, but I'm now back to my deck shoes, which are even more comfortable.  I can wear those sockless, too, like Don Johnson in Miami Vice (the series).

It sounds like Karin has the HFS figured out...so now she has neuropathy!  The big toe on my left foot is almost back to normal.  It got tingly after tx #4 (I think), and felt numb.  It was weird--I could touch it, and it seemed normal; but most of the time it felt like it was "asleep".  Now I don't notice it so much.  My feet are still peeling, but the tissue underneath looks healthy so I'm not worried anymore about that.

Randie, this is TMI, so I really don't want to know ... but I'm trying to imagine using mouthwash "down there."  No, I'm not trying to imagine it.  I can't even imagine being that sore there.  Is it like thrush?  I had thrush "down there" once, when I was on an antibiotic for 3 wks, but it didn't hurt so much as it itched.  And, OMG, it looked terrible.  (Don't ask.)

People have no idea what this is like.  I thought being bald and vomiting a lot were the only two things I'd have to experience with chemo.  Boy, was I wrong!

The "bald" part was correct, and has been more of a struggle than I imagined.  I never came close to vomiting with Taxotere & Cytoxan (whew!).  But, I had not expected the sore fingernails (with nifty white lines for each chemo tx--how special!), the "burned" and peeling feet, the swollen tongue, the complete loss of taste, the scalp bumps/pustules (love that word "pustules"--it says it all!), the bone pain, the numb toe(s) ... and now, the puffy hands and feet.

There is one benefit to all this, believe it or not.   I started on Arimidex about 10 days ago.  It is too early for "real" Arimidex SE's, I think; but I've been reading the Hormonal Therapy board.  People who've been on Arimidex for just a day or two are already complaining about bone and joint pain, and dizziness, and tingling in their fingers, and puffy ankles.  Heck, I can blame all those things on chemo, and keep believing that I am SE-free on Arimidex! 

Sue, welcome!  I wandered over here once or twice and found the crowd friendly, so I split my time between here, the April '08 thread, and the Taxotere/Cytoxan group.  I have to admit that I really like this May '08 group, and you will, too.  (Most of 'em you know already, I think.)

Gotta go.  I forgot to eat lunch.

otter

Women,

I NEVER wander off this group. YOU are all enough for me in the best way. Why wander when I wandered on to the best to start?

I am sending those of you going through mega SE a lot of healing thoughts and hugs and love and even prayers (which says a lot as I'm not much of a praying person). I am hoping, Rock, that you promise yourself to get some people over to help set you up so you are MOST comfortable. While I recognize and salute you for living independently, I know, too, that you have friends who are really wanting to help. True independence, my dear friend, is asking for support when you need it. Get it, girl.

I am so thankful for those of you who are researching and sharing with the rest of us. I am a neulasta girl and we think I am getting my headaches from them...any research on that? I understand the white blood cells are created in the largest of bones (spine, thigh area and, perhaps, the back of the head where all of these headaches begin?). They are, so far, easy to handle with tylenol though many of you said do NSAIDS as well or switch them out so not to bother my liver too much. I have only take six extra strength in one day a couple of times so I am not too worried. The taxol thing is scaring the living daylights out of me as I hear you speak of the se's but my onc said most of his patients do better on taxol than taxotere. Perhaps some of your oncs would consider switching you taxotere women over? They drug is very similar. Worth an asking I think. I love you all and send you healing thoughts.

Last night, my dh and I (did I mention both our kids are at camp or visiting friends? No socks, no  sweatshirt....ahhh) walked to see two fabulous fireworks extravanganzas...one over Ellioot Bay on Puget Sound and one just past the Space Needle on Lake Union. At times, they were both running and it was hard to decide which to train my eyes on. The walk out and back was about three miles and the evening was mild and the best, best part is that we heard soooooo many languages being spoken. It made my evening to hear Chinese, Spanish, Russian, Danish, Hmong, some kind of Somali or Sudanese language that was hard to recognize, Filipino and more. It was truly an American experience. Loved it. Will check in with you soon Otter, I am glad you remembered lunch. Retain our weight...I may be retaining a bit too well. Super13, nice to meet you. RanD, I am so sorry for your bottom issues. I had them when I was on our Lake Roosevelt trip....there is a song from Avenue Q called, "I'm not wearing any underwear." You might want to check into it. I hope you feel better soon. Ciao

Randie, Rock and Everyone else,

Look what I found.

By the expression on his face, can you tell where he just put that fudgesicle? I see a strange kind of relief.

Enjoy the day, Karin

To ALL

Starting Chemo May 2008,

Not what we wanted oh isn't this great.

Chemo never was part of our plans,

But things changed after our tests and scans.

What do we do and where do we go?

We all found each other while feeling low.

I thank you my friend for being here,

You understand and are truly my peer.

Together we're strong and will get through,

So to each of you, I must say Thank You.

This also applies to our many supporters like Otter etc that frequent our thread.

I had to edit to appoligize to Otter. You ARE part of this group, you just started in April.

Enjoy the day, Karin

Day 4 of treatment #3 for me and I slept all day.  Now that I am awake, what a treat reading the last couple of days posts.  You all crack me up!  Love that fudgesicle picture!

You guys are the greatest.  Where else could I talk about the wonderfulness of chemo????

still gimping around...but would go for a walk with you Rock in an instant...

sitting here with just a towel on, everyone is at the softball game, so I can commando away....

The sores seem to be migrating all over the place, but, TMI alert, it doesn;t itch, just hurts, even a strong stream of water from the shower has me ylping.  The mouthwash works okay, the lidocaine doesn;t kick in fast enough for me, so there's a lot of ow owow ow ow oh sh"" coming from the bathroom these days.  The only way to apply it is with my fingers, if I use even diaper wipes, it tears the skin and youchie!  I amnot sure about vinegar, maybe I will try that tomorrow, Will use an ice pack tonight after I A&D for the night.

How about good news for a change.  I have thought and rethought  and I could actually do some fun summer things, mayb hit the beach at my brother's for a couple of days.  So, instead of thinking that now I won;t be done til 9/11, I will think of it as a summer break from the chemo gods...The other plus is that my surgery will be closer to the end of Oct., so I can celebrate my birthday at home. 

My other good news?  The chemo is working, one tumor complety disappeared 2 days ago, and the mass feels about 1.2 the size it was.  WOOO HOOO...

As far the zucchini, when I had excess, I ended up using i to make pickle relish and it was the best ever, and reaaly colorful.  My kids loved it.  They also started asking what was in their dinners since I shredded the stuff and put it in everything I could.Their fav was a chocolate zuke bread/cake and they still ask for it today.

Here's hoping that we can all stick the fudgsicle where it will do the most good!!!

randie

Guys,

I HAVE PEACHES!! Two trees, and they are getting ripe!  We are going to pick them later.  They are the tiny, white-fleshed freestone ones, I think they are called Georgia Belles.  DELICIOUS. If you are just wanting a piece of fruit, it takes two.  If you are making cobbler, which I will be later, it takes a lot of peeling and cutting.  If your are freezing them, ditto.  This year I will be using what I can manage energy wise and giving the rest away.  Wish I could share with you guys!!

Rock the bald has iced the feet

Now her mobility is sweet

Off to the farmer's market she'll tread

To get her some zucchini bread

Burma Shave

RanD~ did they tell you to possibly soak in hot water to help? It will soften up the skin in that area some. I sure hope you get to feeling better soon. My heart goes out to you.