June 2011 A/C & T Groupies Unite!

I had AC#4 today. WoooHooo! MO said no nausea on Taxol. We'll see! Bobbi Jo, I'd keep their number close by. I think I posted in addition to Emend, Aloxi, ans decadron, at home I took decadron, zofran, compazine, ans Ativan. I was still pretty queesy, but it is doable. Hope you dont have ANY SE!!! I remember aome posting that they were thowing up during the Taxol infusion. I'm hoping no nausea for me! She did say the Chemo continues to have a culmulative sleepy effect and nerve/joint paint. Going to go get l-glutamine and b12 complex vits that the MO recommended. Healing prayers, healing prayers...

Well I just had my mid-cycle WBC & it's 500!  Also my Hgb is down to 8.  I started on Levaquin again & we're holding off on transfusion until Monday when I'll have CBC again.  Avoiding crowds, raw veggies & fruits and eating anywhere I don't know the cook--no restaurants.  Also eating lots of red meats, organ meats, baked potatos, canned asparagus.  Hope Monday will bring better news.

On Day 17 my hair broke off at about 1" so hubby buzzed it short.  It doesn't seems to be falling out & is actually growing a little--that probably won't last! 

Michelle, hope we both get our 4th & final next week & move on to the Taxol.  I'm anxious to hear of the rest of your  Taxol experiences.  We haven't discussed much about SEs of Taxol at the Center, I wanted to get through the A/C first.  I'm having 12 Taxol (weekly), how about the rest of you?

Love, luck, laughter, peace, prayers, & little SEs to all,

Suzanne

I am starting a/c dose dense next week but decided I would ask my question here since you ladies are a few steps ahead of me. When does the chemo induced menopause take place. Did you just stop getting your periods? Are you getting the menopause systems now? How long after chemo did you stop getting your periods?

Hi everyone! Sounds like it's been a big wap of info these days - thanks to the T girls for sharing their experiences.  I don't have much to add from the AC perspective, other than one additional annoying thing - my nose drips all the time!

Chava, chemopause has been a trip.  I stopped the pill right before starting chemo and that was my last period (it was more like breakthrough bleeding since I stopped mid-cycle -- so much fun to have had my first chemo experience while bleeding - NOT).  Since then, no periods.  My hormones must be a bit wacky because I have no real sex drive and occasional emotional days... hard to tell how much of that is the whole BC experience vs. hormones vs. SEs.  I'm 9 weeks post my first chemo tx and thought I was doing pretty well with hot flashes, but just in the past week they've been more intense and more random.  It's not necessaraily related to the recent hot weather we've been having but I'm sure that's not helping matters.

Don't know if that is helpful to you or not. Other than not getting my period it's all been a bit random and/or difficult to differentiate from the other stuff.  I don't miss not having my period though LOL!

On a semi-related note, I got a voicemail from my GYN the other day who said she received a letter saying that I would be starting chemo soon and that I should strongly consider calling her with information about freezing my eggs.  Duh, too late!  I almost hope she's confusing me with someone else - I saw her the week before starting chemo to get an annual (they can't do pap smears once you're on chemo, apparently) and to talk about non-hormonal birth control options.  Makes you wonder doesn't it?

Sorry to ramble... so tired!  I haven't gotten a nap in probably 2 weeks and it's definitely catching up with me.  

Wishing you all the best,

Kat

Kat, Medicine has become so impersonal and boiler-plate. So many mistakes are made because the doctor doesn't pick up the damn phone or personally write the letter. I was so upset yesterday after spending over 8 hours at the hospital getting chemo. It's a conveyer belt there, and all about getting in as many patients as possible. I was so upset they took me out of the waiting room to talk to me, then I got my sister mad because "getting upset is not healthy." I'm so tired of people telling me how I should feel, and that I look good, and that I haven't lost any weight... They scheduled 125 patients for chemo for Thursday. I see my SO on Tuesday and can't wait to talk to her about switching. My MO and SO differ in diagnosis and staging. From my experience in the past, the cancer center seems to always be conservative, and I am starting to feel that the calcifications I had should have been biopsied.  Can't change the past, but I can sure advocate for what I believe, and change the future. Sorry to rant.

Suzanne, I a having 12 week taxols starting in 2 weeks. I am guessing you are going neoadjuvant?

Wishing minimal SE for everyone! Rose

Rose, actually my Taxol is adjuvant.  My modified radical was 5/26/11/  l had mets so I'm guessing the onc just wants to decrese my chances of more recurrence.  Also since I have an extremely rare & aggressive type of  breast cancer (Metaplastic) that no one is quite sure how to treat it.  My onc, practicing 5 years, has only seen 1 other pt. and my breast surgeon, practicing breast cancer surgery 38 years, has only seen 2 others before me.  It is mostly seen in women in their  20's - 30's, I'm 64.  Not too many of us who are out for more thatn 5 years but a few that are 7-8 years out of treatment.  It was only recognized as a type of breast cancer in 2002 so most of us are still guinea pigs.  The nearest study group is at M.D. Anderson and they have 20 people currently in trial and you need to live/relocate in Houston for at least a year for almost daily visits.  That just isn't feasible for me.  I'm in a closed online support group that includes only 148 members worldwide, so you can see that we're a very small group. 

Bobbie Jo, I started menopause at aged 35 & have contniued to pass through.  I had periods every 2-3 years but the last was at least 2 years ago. I've had hot flashes for "all those years" but they do seem to have increased since the start of chemo.  It's so wierd to all of a sudden have a wet head!! 

I went to an ACS "Look Good, Feel Better" session yesterday.  Had a blast with the local gal, I live in a very small town so our session was one-on- one; sessions are supposed to last 1 hour but we went for 2.5 hours & only stopped because I had an appointment for my blood work.  After 64 years I finally learned to apply make-up!  I've never worn it before but at least now I'll know how to apply those eyebrows when the time comes.  She even trimmed my wig so it looks more like my previous "do".  If you haven't gone through a session, when you feel better, it can really lift the spirits.  If we had only had a "frozen concoction"  could it have been more enjoyable.  She's young enough to be my granddaughter but it was fun.

Off to find more foods to increase both WBCs & Hgb!

Love, luck, laughter, peace, prayers, & little SEs to all.

Suzanne

I went to a Look Good, Feel Better session right before my first chemo session.  I agree, it was very nice.  Mine was a bigger group, about 8, but the licensed cosmetologist gave a great demo on applying makeup and the products you get are top shelf (Chanel, Lancome, Estee Lauder, etc).  I also was given a list of salons that had free wigs for cancer patients.  I took advantage of that offer and got a nice, new Gabor wig.  But I have to say that now that I've tried 3 different wigs (one I bought and another one that was given to me), the one I bought that was fitted by a wig expert is, by far, the most comfortable and properly fitting wig of all.  I could wear it for days, sleep in it, shower in it and never feel uncomfortable.  The caps on the others are just too big for my "apparently" small head.  If they don't fit right, they are not comfortable.  I've tried taping the others in position, but the inside is not made to stick to tape, so they move around just enough to get uncomfortable.  Too bad because one of them is a really fun blonde style with straighter hair that I could "wish for."  

Bottom line - seek out the LGFB program in your area.  It's worth a couple of hours and is fun.

Michelle

Suzanne, I have an extremely rare (<1% of all BC) form as well called micropapillary carcinoma. It is extremely aggressive and they felt they needed to know that the largest tumor in my axilla (3.3 cm) would shrink on chemo and have clear margins during surgery. I am so scared because it's still in my body, and I worry about distant mets. When they told me I wouldn't have surgery until after October, I freaked. Stats show poor prognosis with metastates and death in 2-5 years. Nice stats I try not to think about it!

Redplasticboots, welcome to our group. I'll have to tell you a story about red plastic boots.  

Rose,  I understand the not wanting to wait part.  My metaplastic is also <1% of all bc's.  My Ki-67 is 100% & besides the nodes being +, they found it in the soft tissue in the axilla.  Since then my bone scan & PET both show a lesion in the sternum that I'll worry about after the chemo.   Right now I just want to get through 1 more A/C & 12 Taxol!

Welcome Redplasticboots, we're sorry you have to join our group but we're also glad to be here for each other. 

Love, luck, laughter, peace, prayers, & littles SEs to all.

Suzanne

BobbieJo, so sorry to have panicked you. I should amend what I saiad before - you CAN get a pap during chemo but I was told it's better to get it out of the way because the chemo can make the cells look abnormal and then you have a questionable test. ???but maybe that's not true.  I dunno!  So sorry you are having nausea - that sucks!! - does ginger ale or any other ginger stuff help?  I found if I never got too hungry or too full, all was manageable, but I had decardon and reglan to cover me for 3-4 days after.  Rice cakes or dry toast with ginger ale seemed to work for me when things were at their worst.  And cold stuff like ice cream or popsicles!  You will get through this!!!

Michelle, you are right and besides LOL there's not much need for birth control these days because I'm not very, um, active anyway. Not easy to feel sexy lately   Basically, just before starting chemo I talked with my MO and GYN about what I should do being on the pill and all.... even with this tumor being ER- there was some concern about my longer term risk... and I had been on the pill for 17 years... so I decided on a diaphragm and got fitted during my annual.  I may not need it these days but it will be my method of choice from here on out.

Rose, no worry about needing to rant. 125 feels like a crazy number!  And I can relate to what you're saying about still having the tumor in there during neoadjuvant.  Probably the most difficult part of the decision in my opinion - it's like, how soon can I get this thing out?  I have to try to trust that the chemo is doing it's thing.  I haven't been exercising much either and I miss it terribly!

Everyone else in our little family.... hope you are all well tonight.  Big hugs!!  Best, Kat

Well, Day 13 after my first AC treatment and I am blessed to feel and look as healthy as always. NO fatigue, nausea, mouth sores, constipation, or "hair problems" (Cold Caps).  I haven't taken any antinausea or pain pills since Day 3. I will have my second AC treatment next Tuesday, what should I expect? Do the SE increase or are different with every treatment?

Starches for me, too BobbiJo! I am day 5, I've been down since 2 days before this treatment with fatigue, but the nausea is letting up today. My brother-in-law made me mashed potatoes, and that was lunch for me today. I'm shaky! I'm hoping to get into the pool to get some muscles moving today. This is the place to whine! (((Hugs)))

Michelle-Thank you!

Bobbie Jo -I hope you are feeling better. Try The Magic Mineral Broth which can provide a tremendous nutritional boost and some of the receipts from The Cancer Fighting Kitchen by Rebecca Kats where she explain how FASS^TM (stands for Fat, Acid, Salty, Sweet) works. According to her, together, these are the flavor carriers that get us tasty nutrient-rich food by unlocking the taste of whole foods, herbs and spices. When blended properly, they form a beautiful four-part harmony with our taste buds serving as the pitch key. It worked for me, so I didn't have to stop eating the veggies and fruit that I love.

Also, I highly recommend to try to keep a daily journal or a food/medication log to keep track of  them. I was really surprise that I couldn't remember almost any detail of my first AC experience 15 days later. Until my doc asked me how often I feel nausea, fatigue, constipation, etc. and which medications make me feel better and which worse, I realized that my memory is gone. I remember that first week, but the specific times or frequency of some of the symptoms I just can't remember. If you ask me what activity I was doing when I felt nausea or at what point it got worse , I get really confused trying to remember if was day 2 or 3, in the morning, after or before eating, etc. Somehow the days mix together, so my doc advise me to keep a log because you can control better the symptoms if you know if you feel better after you take a nap, walk and if you snack every 2 hrs. or not. Good luck!