February 2011 chemo pals

SpecialK

jenn - I had a BMX last Nov.  I take it you are doing neo-adjuvent chemo?  My BMX (skin-sparing, nipple-sparing) was with immediate placement of TE but I eventually lost the left one (the prophy side) due to skin healing problems.  I am still without it probably until June.  On a side note, but related, I had my 2nd echo yesterday since I am half way through chemo and 1/3 of the way through Herceptin.  I have the echo on base at MacDill AFB here in Tampa.  It was conducted by two strapping young (and I mean young!) men in uniform.  Here I am with one expander on the right and completely flat with a bunch of scars on the left which is where most of the exam takes place.  This poor kid was trying to move the transducer around and he was tripping over the bones in my chest.  It was so awkward and I felt bad for both of us!

Paula66

Jenn I had both of my breast removed.  I dont know if and what tye of reconstruction you are having.  I choose to have TE put it.  I really didnt have to much of a problem with it.  I was uncomfortable for a week to almost 2 weeks.  I was able to have one drain tube  taken out after just a week, but the other one didnt come out until week 2. My main issue was the drain tubes.  That is a hassle.  I understand it has to be done.  But a hassle none the less.  Once I had them both gone, healing seemed to go faster.  Get extra pillows for your legs. Sleeping on your sides can be uncomfortable for awhile and if your not aback sleeper the pillows tucked under your knees help with that.  I do know that the first couple of times I got outa bed to go pee was an event I dont wanna repeat.  I wasnt told to lift myself by my tummy muscles and once I did it that way it got so much easier.  Pain wise it was a bit rough but just take your meds just like they tell you and its alot easier.  There is no point in trying to be a big girl and not use them. After a week I was down to iburophin so I was good to go, pain wise.  Do take it easy and no lifting for while.  Good Luck!  

charlottesmama

Hi ladies. I went back to work today, and I was SO happy to be there! Of course, I felt really out of shape and know I will be aching tomorrow. I'm a pastry cook and my work is VERY physical: on my feet all day, lots of walking, lifting, etc. It dawned on me that I should request a Physical Therapist to work with me after my surgery with the goal of getting back to work ASAP.

Here's a little ray of hope I can share with everyone: My hair is starting to grow back! I'm three weeks out from my last A/C, and I see 1/2 inch long fine wisps all over my head! And some of my shaved stubble is getting longer, if just incrementally. Yeah, I'm still mostly bald, but I'm so happy to see some activity up there!

thefuzzylemon

Michelle!!  WHOO HOOO!!!  Are you...fuzzy?? LOL 

christine47

I soo want to be fuzzy!

thefuzzylemon

LOL...I'm hoping to be Fuzzy by Christmas!!

SpecialK

Fuzzy you are already fuzzy!

thefuzzylemon

Special K - Did I tell you I'm getting a tatoo after all this business that looks a lot like my avatar?  I had to run it by the kids first and they finally agreed that I could get one...I like being Fuzzy

christine47

Fuzzlemom, you had to "run it by the kids first"?  too funny, how old are the kids?  I asked my 14 year old son if I could pick him up from school with out the wig someday.  His answer, "you will just make yourself look dumb". 

I hope we are all fuzzy before Christmas!!

thefuzzylemon

Howdy...I've wanted some pretty crazy tat's in the past...now I want one that will represent this journey and I think they totally get that...my baby girl is 16.5 and my older baby girl is 19 this month...it is really funny!!!  They are my best friends and I run everything by them!

That's funny about your boy!!  I've worried about being all "chrome doming" in front of the girls' friends...I'll have to ask them about that....I had that wig on for 5 minutes and hated it!

Yes...we need to all be Fuzzy by Christmas!!  I think I'm one of the last ones to finish Chemo...I think??

charlottesmama

Fuzzy for Christmas. I love it! 

I still don't know if I have to do Taxol post-surgery. If I do, my hair will restart from zero, so you all may be way ahead (no pun intended) of me by then.

I had a breakfast "date" with my daughter at school last week. One of her school buddies we've known for a few years told me my hat was cool. But wanted to know why I was wearing it. I told him I didn't have any hair and it kept my head warm. I took off my hat so he could see. "Oh. OK. Cool." Then a little girl  said, "You're a lady! Why don't you have hair?" So I told her, "I have cancer, and I have to take some really mean medicines to kill the cancer. Unfortunately, the medicines made my hair fall out." "Oh. OK. Cool." LOL!

thefuzzylemon

Well..that was WAY better than the coffee house kid!! LOL

Fingers are crossed that you don't have to do the Taxol!!

christine47

charlottesmama,

From what I understand many grow hair during Taxol, you never know maybe you will get a "headstart".  Keep us posted.

JeanH

Hi ladies,
Taxol has been way better than the EC. I sleep through about half the infusion due to the Benedryl an d then need another nap when I get home. I am getting some back pain doctor thinks that is nuelasta. Aleve helps that. I had before chemo and have had surgery in past so can deal with it. Annoying especially when it goes to tailbone. Hips hurt for a few days after nuelasta too. I do not take claritan with taxol- may try again tomorrow. Last cycle was worried since I have benadryl, served and decatron in IV as premeds did not want to add another allergy med and aleve was helping.

I developed a rash early on in treatment and thought it was a moisturizer or soap but it spread up my arms and when had my last Taxol the ONC sent me to a MSK dermatologist that specializes in reactions to Chemo. I saw him Wednesday and he gave me a rx for another antihistamine that does not make you sleepy and a hydro-cortisone creme. It usually gets better after taxol but last cycle it did get bad again. Apparently both the c and the taxol can cause. Taxol is typically back of hands and arms and I have on the top of back as well. Switched to eucycim cream moisturizer per derm which helps I always use All Free which was another suggestion as our skin gets so dry during treatment is becomes even more sensitive than usual. I go back to him before rads for another cream to help prevent burning during rads. He is a little concerned as large breasts and fair skin put me at a higher risk of getting a sunburn like reaction but he has good results with using the cream preventatively.

I also have been trying to improve my eating habits saw a nutritionist and read the pick ribbon diet, have the other book mentioned, can't remember name at the moment but have only read parts of it, also watch a TED lecture on the subject which was interesting about how some foods discourage cancer from growing. Good news is most of the information does not conflict. The best advice the nutritionist gave me was to phase in the changes, for example replace the white pasta and bread with whole grain, added extra servings of vegetables etc. The other tip was if the is some refined carb you love, risotto mmmm, make sure you eat with protein to lower the glycemic counts. I have lost about 12 pounds and hope to continue the trend. Will be harder now that taxol does not kill appetite but so far holding. Weight fluctuates about 2- 4 lbs due to water/constpation but range is lowering.

I got the weirdest feeling in my toes I felt they had paper around them, I had to take off socks and massage them, it lasted a few days then went away. ONC confirmed today it was nueropathy and will go away when treatment is over. I also get muscle strain in my right eye. That was a new one for him but it did correlate to treatment.

I went to Chicago this weekend to see my son in a fencing tournament it was fun but Sunday was 86 degrees. My wig was so hot, I ended up taking it off for the flight home so it was not pretty when I unpacked so had to send it it for wash and style. Scarves to work and now have my hair again. I am pretty comfortable with the scarf through DH prefers the wig I think.

Mama of two sorry I missed you at Phelps, will you do rads there too? I think we both get Chemo on the same Thursdays

Fuzzy good luck returning to work, hope the travel schedule is able to be reduced. I am getting to the point I can only post on weekends and I miss all of you.

Hugs to all,

Jean

JeanH

Yikes! Need to spell check that last entry on a real computer.iPad made some interesting substitutions too.. Will do as soon as I can sorry, I hope you can understand.



Jean



4/4 EC done, 2/4 TAXOL next treatment 4/28 then rads and tamoxifen.

JeanH

My eylashes are going - stopped mascara and went to eyeliner - too spiky and obvious with mascara without they are blond and invisible.

Have to admit getting dressed for work is much faster with the wig/scarf deal and I was already pretty low maintenance with hair.

Jean

safari94

Hello February Gals!

So hard to believe it is already mid April! Well, I haven't been on much as I was just wanting to get it over with!! Well. . I am DONE! Finished TC x 4 last Thurs just in time to ring in my 38th birthday!! I had my post-chemo with the Onc today and planning out my 33 rounds of rads!! Sounds like a cake walk compared to the chemo! My fingers are crossed!

I just wanted to post some positive aspects for any still in treatment... First of all, it seems like a lot of you are doing Taxotere now.  I had 4 rounds and no real terrible SE's.  I experienced some exhaustion for a couple of days and some bad acid reflux which apparently was from the Taxotere.  My fingernails have held on but I iced them during the tx (put ice and water in a baggie).  My brows thinned but never lost them completely and lashes didn't thin even.  And the HAIR..... lost most of it by wk 3 but started growing back by WK 5!!  I have a pretty full head of peach fuzz that is growing pretty good (even through last 2 tx)!!  Never experienced neuropathy or mouth sores! Well, I just wanted to tell some of you who already did Adriamycin that I think those SEs seem to be much worse than the Taxotere.  I know it is different for everyone but I just hope to give some a glimmer of hope that the worst is already passed!

I want to thank you all for always being there - whether you knew it or not! This thread has gotten me through the most difficult time of my life and I will forever be grateful!  Know that I am thinking of you all and praying for you daily!

Hugs from West Palm,

Mary

SpecialK

Mary - So happy you are done!  Yay for you!  Hopefully your rads will go smoothly and I am so glad that you made it through the chemo part without too many problems.

SpecialK

Jean - there is a website called www.damnyouautocorrect.com that has iphone autocorrect funnies on it.  You will wet your pants laughing.  Here is the disclaimer - if you are offended by language or inappropriate material DON'T check this site.  My warped sense of humor made it funny to me!  Your rash thing sounds a lot like what happened to Emily...interesting.  I had a rash but it was everywhere and coincided with an antibiotic and tx.  I asked yesterday at my weekly blood draw if I really now had to take steroids for 4 days every tx and they said yes it is better to be safe if I am allergic to the Taxotere.  Bummer.

This week I am apparently retaining water in my eyelids, what is up with that?  Hands, ankles and eyelids - it is not pretty folks.

Melanie_Ann

Omg that has happened to me! -water in the eyelids, hands, and feet. Some days I wake up and my eyelids are soooo swollen. It's strange.

I was to be fuzzy too! My 6 yr old nephew, 10 mo. old niece and I are in a competition to see who has the most hair by Christmas. Right now the 6 yr old is winning. My brother, not hearing our conversation, told him he was getting his hair shaved off for the summer. (his hair is really thick) He screamed. NOOOOO. My brother was like...what is wrong with a haircut. He said: I'm in a competition and I'm winning!!!! 

So I explained to my brother what we were doing. He told him that even with his head shaved he would still be way ahead of me. It was so funny. My 10 mo old niece just got thrown in the mix. Of course she has no idea but at the moment she has slightly more hair than me. Poor girl. It's sad when the brother in the family gets the nicer, thicker, curly hair. 

mamaoftwo

Mary- Congrats on being done with chemo!  Must be such a great feeling.  I am savoring your excitement and can't wait to share in it come June 2.

Special K- sorry to hear about the water retaining, especially the eyelids.  I can't even imagine water-retaining eyelids.  Of all side effects, that one I never thought about.  Bummer about the steroids.  I am going to ask the same thing when I go to Taxol on Tuesday.  I cut my own dose in half for EC, since the steroids were for anti-nausea and I found I could handle half a dose, but will ask about Taxol.

JeanH- sorry to miss you at Phelps.  I was there today meeting an ENT specialist about my throat issues.  When are you next there? I will be there Monday afternoon for a throat biopsy and Tuesday April 19 for chemo. Returning May 5 and 19 for chemo. Are you there on any of those dates? If so, I'll come say hello and meet you.

Hope everyone has a great weekend of healing and non-cancer related thoughts.

Laura

EmilyInOntario

I am so happy for those of you who are done chemo! I am counting the days.

I too asked if I HAD to take 3 days of steroids when starting taxotere and the oncologist said I ABSOLUTELY could NOT reduce the steroids because of the danger of a reaction. That scared me enought to do what I was told..*L*

The rash on my hands has faded so I am hoping it is clearing up...

sewingnut

I was told the 3 day steroid treatment was for the water retention caused by the taxotere. I welcomed it, also helped with the little aches and pains. Although the only side effect I have gotten from it was peeing alot and a mildly red face.

SpecialK

I forgot about the flushed face - I get that all the next day from the steroid in my drip.  Damn, now I am going to be red for 4 days!!!  The steroids are for general inflammation too and allergic reaction.  After my BMX I had a horrendous (and I am NOT kidding!!) allergic reaction to Levaquin, an antibiotic they routinely gave me after the surgery.  They gave it IV and as soon as they hung that bag I got dry heaves.  They blamed that on coming out of anesthetic, but that had been 12 hours previous.  The rash was so bad I had to go on a tapering 7-day dose of Prednisone after I came home.  They  hate to give steroids that close to surgery because they can inhibit healing but I was on the brink of re-hospitalization for this reaction.

mamaoftwo

Levaquin is the worst!  I have no allergies, but when I took Levaquin over a year ago (pre-cancer) for a respiratory infection, it made me so nauseous and dizzy that I refused to take it after the first day.  It's a nasty drug.

SpecialK

mamaoftwo - they wanted to give me Levaquin for the UTI after tx#2 and I was not having it!!!  I would have breezed through the BMX except for that reaction.  Truly awful!

alison0415

For those of you who wanted to learn more about accupuncture, there is information on this breastcancer.org website.  There is a link to look for professionals and it does say not to have needles inserted in an arm where lymph nodes were removed.  My accupuncturist did research breast cancer which made me feel better.  Anyway, if you're interested, check it out:

http://www.breastcancer.org/treatment/comp_med/types/acupuncture.jsp

Alison

dogeyed

Mama of Two, I did not realize you had a throat problem, hope the biopsy turns up negative.  I'm sure you know, but all rounds of AC have dried out my mouth and throat and made sore places, and only thing that relieved it was gargling with salt and baking soda, and I also use Arm & Hammer peroxide toothpaste.  My throat was relieved, too, by drinking lots of water.  If you haven't done some of that stuff, give it the old college try.

Special K, I have heard a numer of people talk about their eyes, and I have had a problem with my eyes since around AC#2 of 4.  I figured it was because I cry a lot, I'm rather emotional.  But I've decided it's been so constant that perhaps this is a bonafide side effect of chemos.  It's like a glue that in the morning makes my eyelashes stick together and makes the eye skin sensitive.  I put in regular plain drops, and I use a very damp tissue to dab them and smooth them loose of goo.  Then I put a little lotion around them.  But I sometimes keep feelig like an eyelash or two is jammed into my eyeball.  My eyeballs in general feel watery, like stinging from whatever.

All, I start Taxol on Wednesday, then every week after it'll be on my regular Thursdays.  I'm ready for my feet to hurt, as they hurt several times in AC... I actually tought they had accidentally given me some Taxol by mistake, knowing side effects.  So, I can do that.  But what worries me is the insomnia thing others report.  I am afraid of the dark and am never comfortable if I wake up early.  I haven't had trouble GOING to sleep, just staying asleep on chemo.  It terrifies me, this thing with the sleep.  I'm sure my doc would give me a sleeping pill, but he says they might trigger my nightmares, which I get with chemo.

Oh, one more thing, the "rash" some of you speak of from chemo.  I was told to wear lotion with SPF 30 or something (don't know numbers).  Well, like an idiot I didn't get any at the store, and one day husband and I had car trouble on way back from cancer clinic, and we had to be out in in the sun for more than normal.  When I was told I would burn from not wearing that lotion, I thought the doc meant red skin.  NOOO, it was like a real burn, only zeroed down into varying sizes of pinholes, as though someone had directed it with a magnifying glass.  I remedied it by putting ordinary hydrocortisone creme over-the-counter from drugstore, and of course lotion, and now it just looks like a bunch of freckles.  IS THAT WHAT YOU ALL'S rash looks like?  I am afraid to get a rash, what does it mean?  Thank again, all, for giving me a home to confess all my trials. GG

thefuzzylemon

Good morning ladies!!  Yesterday was my first round of Taxol!!  And...14 hours later I am up, eating, having coffee, playing with the puppy...thinking about going shopping!!  OMG!  I am schedued to work on Monday and I THINK I CAN DO IT!!!  I know I might be getting excited a little early (days 2, 3, 4 may show significant joint and bone pain) but...after that damn AC crap...who cares??  *L* 

My docs and the team told me I wouldn't need to ice my nails (I told them I didn't mind any discoloration, just didn't want them to fall off).  I also was not sent home with any medication...no more Neulesta or Emmend or steroids...I couldn't be happier...

Thank you...all of you for the details on your treatments.  It has helped me get through all of this!!!  And will continue to help me get through the next 11!!  Then onto 6 weeks of radiation...then what happens??  When do we get to start thinking about reconstruction and tatoos and vacations?? *L*

Paula66

LOL Fuzzy on the tattoos.  My sis lost both her brest to cancer 10 yrs ago.  Well I lost mine 4 months ago.  She wants us to get the fingers of rock for nipples, lol.  Im still deceided on that one.