TRIPLE POSITIVE GROUP

SpecialK · June 2015

To add to what lago said regarding ginger - a lot of people like the Gin-Gin hard candies. I did not use them but a friend who was TN and had AC-T swore by them for nausea and helping with dry mouth. Here is a link:

http://www.amazon.com/The-Ginger-People-Gins-Candy/dp/B000EM8308

lago · June 2015

Also Chimes Ginger Chews. You can find them at Cost Plus world market as well as amazon.

Cheesequake · June 2015

Three cheers for ginger chews - I have been eating them since long before I had BC, I LOVE them! The Ginger People have a version available for sale at Trader Joe's that's my favorite - usually can find them right on the checkout aisle. I once bought a bulk box of 800 of the candies directly from the Ginger People, they're slightly different (harder, a bit smaller, different wrappers) than the TJs version. Cool thing is they're only 20 calories each and they taste awesome (to me at least!) I hope they do actually work for nausea - that along with medical cannabis and I should be set

Suladog · June 2015

During my weekly Taxol/herceptin I used to bring a little tupperware thing of raw ginger slices to suck on, I learned that from my last chemo 25 yrs ago. It works great.

flaviarose · June 2015

I had a hard time with nausea and vomiting during chemo. Zofran gave me a headache, so did compazine. Phenergan worked somewhat. What worked best was cannabis.

Jerseygirl927 · June 2015

to neutralize the tongue, I would use the baking soda, salt, warm water rinse and just let it sit in my mouth for about 30-45 seconds. That would get that horrible taste and help the mouth sore the best. Just keep it in the mouth for as long as you can. Water with orange slice worked nicely for me to get more fluids in....

Tomboy · June 2015

Warm salt water or baking soda worked well for me too.

kdcjjc · June 2015

My doctor didn't palpate any lump a month before a routine mammogram showed a false area of concern which brought me in for the ultrasound. Thank God for the ultrasound angel that found the real 1.1 cm tumor that lead to diagnosis.

oconnor2450 · June 2015

Special K, Iago, thank you for your bone drug replies:) A new twist, a visit yesterday with my MO here in Maine has prompted the suggestion of a 6 week break from AI and then switching to Tamox. I fractured my wrist in Jan, oh and I can't think my way out of a paper bag. My head feels like it's wrapped in cotton wool most of the time and if I have 1 glass of wine, it feels like Ive had 3...

Iago, I want to see Dr C when I get to Chicago, prob not until the Fall. Not sure I want to switch, even though these SE's are annoying ( and so hoooooot) it's the devil you know. Since the 1st 3 months were really tough, not sure I want o come clean only to have to go through it again... confusing:/

Anyone switch from AI to Tamox? SE's for better or worse:)?

Thanks,

Bridget in Maine

lago · June 2015

Bridget Dr. C hates Tamoxifen. When I was ready to quit Anastrozole she recommended Exemestane. She said if I wouldn't do Exemestane then Tamoxafen was better than nothing. Are you getting treated for Osteoporosis. I am. I'll call you tonight after work when I Get home (after 8pm your time. I'm about to leave now.

Ohiotripleplus · June 2015

Thanks all for your hints!

Zofran does give me headaches and onc said excedrin was ok. Nausea was gone for a few days and I got some work time in. Then this morning nausea was back along with all day diarrhea and some dry heaves. Been taking lomotil but there's a limit on number of times per day and I'm almost there. Have eaten a half of a banana and a piece of toast . I also have IBS which I figure chemo is aggrevating.

Pbrain · June 2015

Anyone with balance issues since chemo? I'm finished taxol in February of 2013. I'm doing ok with the neuropathy, which was pretty bad in my feet for awhile. I take a mondo-sized B vitamin every night and pee bright yellow in the morning (unused riboflavin), but I think it has helped immensely.

Where I'm struggling is I sometimes feel like the floor is slipping out from under me. I wear flats, no heels or wedges. Anyone else get this?

lago · June 2015

Pbrain Didn't you see the picture of my chin when I fell this past April power walking to work on facebook? I was wearing running shoes. Needed 3 stitches. I still wear heels and sometimes feel I am more balanced in them. The have to be a thick heel and not platform, about 2"-2.5" is best. My nueropathy is mostly in my left heel although sometimes a bit more. Feet get sore all the time now.

debiann · June 2015

My neuropathy was in the front of my feet, the toes and ball of the foot area. I wore flip flops to work yesterday. Haven't worn them since chemo. I had so much trouble walking all day. It was like my feet forgot how to hold the flip flops on plus it itched like crazy between the toes. We have cameras throughout the building. I'm sure I gave someone a good laugh.

SusanHG123 · June 2015

What is this thing you call balance?

Yep. Have actually taken the tumble a couple of times. I quit wearing heels during chemo-neuropathy got too bad. I wear comfy shoes AKA wide and ugly.

I think some of mine is hypotension due to the on-going cardiac drugs from the herceptin induced heart failure. But not all-I am unbalanced. In so many ways.

And, there was pink crap on a food label in a grocery store this week. I guess Pinktober is like Christmas and Halloween--showing up 4-5 months early.

Jerseygirl927 · June 2015

fingers on right hand are numb, bottoms of feet feel like the are not connected, when barefoot, feels like walking on rocks. Balance issue not to bad. Off main chemo, hope arimadex will not make it worse

lago · June 2015

I find the neuropathy can become more noticeable with weather changes (especially rain), humidity and sometimes extreme cold.

debiann · June 2015

Definitely the cold affects neuropathy. I learned that lesson the other day. I wore sandles, but it turned out to be a cooler day. I went grocery shopping.They had the ac blasting in the store and it was freezing. My feet went so numb I couldn't feel them! Had to cut my trip short

Stephmoen · June 2015

ok ladies I am 2 chemo treatments away from being done 2 more tchp to go!! I'm trying to get everything lined up for what's next. I plan on getting a double mastectomy no radiation due to no lymph nodes involved I will have another pet scan and a SNB done at time of mastectomy to be absolutely sure.. My question Is which hormone therapy works best for triple positive I am leaning towards arimidex I heard it works 17% better and I want my chances to be as low as possible to have a reoccurance I read her2 doesn't respond well to hormone therapy? I am only 30 so no menapause yet so I will have to take out my ovaries or do Lupron does anyone have any suggestions???

Tomboy · June 2015

Lets just say I hate that you are only 30 and having to deal with this crap.

lago · June 2015

Stephmoen I have not read that one AI is better than the other but it is more effective than Tamoxifen.

SpecialK · June 2015

steph - the AI drug used in the SOFT trial I believe was Aromasin (exemestane). Here is an article:

http://www.ascopost.com/ViewNews.aspx?nid=20664

For info purposes - my onc favors Femara due to its slight statistical edge in recurrence prevention, but often with AI drugs you have to try them out to see how you do on them - people have different experiences with all three and often have to experiment with which offers them the least side effects, and it can be beneficial to try different manufacturers of the same drug, to find the right fit. Glad you are nearing the end of chemo!

Stephmoen · June 2015

thank you for the info I think I meant aromasin I haven't done much research on this yet because I wanted to get through chemo first.. So I read for taking aromasin instead of tamoxifen reduces reoccurance rate by 34%! That's a big percent to me I am upset about the side effects reduced sex drive and vaginal dryness will not make the hubby very happy but I have 2 young children I absolutely will do anything to stay here for as long as possible. Does anyone know much about Lupron shots and ovary removal neither sound fun but the thought of getting shots injected to my ovaries freaks me out

ElaineTherese · June 2015

Hi Steph!

I'm getting Zoladex shots rather than Lupron to suppress ovulation. My MO put me on Zoladex because she said it would be easier to get my insurance to pay for it (unlike Lupron). Alas, Zoladex is a monthly shot (whereas Lupron can be given less frequently, I believe). Since I live so close to my MO's, I don't mind it that much. I haven't really noticed any side effects such as vaginal dryness. I do get some hot flashes, but I was getting those from chemopause anyway. Aromasin has been OK, too. It did make me moody, but then MO prescribed Celexa and that cleared up. Good luck!

Suladog · June 2015

Steph,

Both my MOs in LA and SF recommended arimidex as they felt it had fewer side effects. So far I've found that to be true. I was just a bit older than you the first time this happened 25 yrs ago, and chemo put me into instant menopause. I was Triple negative then do no hormones. Then. My mo did an estrogen test on me before starting Arimidex and yes there was. Nothing coming from my ovaries but Estrogen. Is also made in all sorts of places stored as as estrone and released as estriadol aka estrogen. ( the bad stuff)

Most of that happens in belly fat, but I don't seem to be doing that either she said since I'vd been functioning on such low hormones for the last 25 yrs I probably wouldn't notice much change on arimidex, which so far has proved to be correct fingers crossed it stays the san

Suladog · June 2015

Steph,

Both my MOs in LA and SF recommended arimidex as they felt it had fewer side effects. So far I've found that to be true. I was just a bit older than you the first time this happened 25 yrs ago, and chemo put me into instant menopause. I was Triple negative then do no hormones. Then. My mo did an estrogen test on me before starting Arimidex and yes there was. Nothing coming from my ovaries but Estrogen. Is also made in all sorts of places stored as as estrone and released as estriadol aka estrogen. ( the bad stuff)

Most of that happens in belly fat, but I don't seem to be doing that either she said since I'vd been functioning on such low hormones for the last 25 yrs I probably wouldn't notice much change on arimidex, which so far has proved to be correct fingers crossed it stays the same

Suladog · June 2015

Ok have no idea why all that came out underlined!

Mommato3 · June 2015

Steph, I get Zoladex shots every 28 days. I decided that there was no way I could do them for another 7-10 years so I'm getting my ovaries and tubes removed Sept/Oct. I'm older than you so it makes my decision a little easier. Just make sure you do lots of research. I'm currently on Anastrozole (generic Arimidex). My side effects so far have been a little stiffness and occasional hot flashes. I do experience a little vaginal dryness but that is probably a combination of OS and Anastrozole. AstroGlide has been good for that (thanks Lago!).

Creativevintage · June 2015

I just had my first TCHP infusion on June 3rd and today is the first day I actually feel like myself again! I wish my MO or the nurses would have explained that I was receiving loading doses of some of the agents that would cause wicked side effects and that they would be reducing the dose going forward. I started with diarrhea on day three and by day 6 I was running a fever and was dehydrated. I went to the ER on day 7 with a temp of 101 and was found to have a white count of 1 and I was severely dehydrated and my potassium was low. I was admitted for three days and had IV Levaquin and Vancomycin. Turns out I developed shingles which did not help! I was on IV hydration for the diarrhea the entire time I was hospitalized and the diarrhea only relented yesterday. I can only eat toast, rice, applesauce and tea.

I guess I got the worst part over with first, since the next doses of the Herceptin and Perjeta will be lower. I don't know if they lower the Taxotere or Carboplatin though. My white count is back to normal and my platelets are 144, which I guess is high enough to have my next infusion on wednesday. I have had some really bad days, especially since a month ago I was perfectly healthy and my cancer was found on routine mammogram. Everyone keeps telling me that TCHP is cutting edge and that my doctors at Mayo are the best of the best, but they are not that great on communiction. They gave me a whole folder of handouts on the drugs and breast cancer in general and did warn me that the side effects hit on day 3-5, but I was not at all prepared for what happened.

Please tell me that this gets easier....I am trying to be brave and keep a good outlook, but I am also a bit overwhelmed.

rosesrx · June 2015

Welcome creativevintage and sorry you now belong to the club. I hope you find time to peruse the boards and mark your favoirites.

Hydrate, hydrate, hydrate seems to have kept the side effects to a minimum. To keep the electrolyes in balance I do something like Figi water or Powerade zero as one of my liters of 3 daily. I ended up in the ER on day 6 with palpitations, tachycardia and high blood sugar along with sodium being low. But a liter of saline normalized things. I am now limiting the caffeine and sugar due to the steroids. The H infusion was slowed down some due to pounding heart. The TC will continue at the same dose and it may be reduced based on blood work and is also weight based. The H was a loading dose as you found out and should be lowered for the remainder of the doses given with TC but to finish out the year will be increased. The P someone else will have to fill in.

So sorry the commuication is lacking but your infusion nurses are a wealth of information, but at the start it is hard to know what questions to ask let alone sift through all the papers. May I suggest you type in search starting chemo and what to expect or what topic you have the desire to know more about. And continue like you have and ask questions here the folks are a wealth of knowledge and experience. My issues were with constipation. For diarrhea your MO should have suggested Immodium (loperamide) adding a probiotic will help replace the good bacteria in the gut that was wiped ou by the chemo and antibiotic.… sounds like you my have had c-diff.

On your profile under the targeted therapy you can add the Herceptin and Perjeta.

I am doing TC every 3 weeks x 6 and H every week for 18 wks then every 3 wks at the higher dose for the remainder of the 52 weeks. Try to stay away from Dr. Google. BCO is a font of knowledge. Visiting some of the chemo boards that start a month or two prior can give you an idea of what is to come in regards to s/e. There are june, may, april/may 2015 boards which can be found under active topics or search.

It does get better… .

TRIPLE POSITIVE GROUP

Comments

Categories