Starting chemo August 2017 - would love some moral support!

TYE89

Hello August Ladies!

Dbl MX was July 10 & I will start chemo on Aug. 21. This board is a blessing! An invaluable source of knowledge & advice that most Dr don't tell us!

I will have TCHP (continue Herceptin through rest of year). I am planning to ice my nails, wear dark polish, eat ice to help prevent mouth sores, take the claritin for bone pain, L-glutamin & B6 for neuropathy, drink tons of water leading up to & after infusion, and praying my body handles it well.

Is there anyone else starting/started TCHP in Aug?

Willow22

Counts were good today, and blood cultures came back negative, so no more Neupogan or IV antibiotics needed this week. Feeling great other than a little fatigue, so my fever blip looks resolved 😃. I did get a little yeast infection - "perleche" on the skin at the corners of my mouth. they are treating the skin as well as my mouth, even tho it doesn't look infected. It'll be interesting to see if my irritated throat clears up the same time my skin does. I've been eating Greek yogurt pretty much daily for the protein, but this was a good reminder to keep it up for the probiotics. I'm also going to soak my hands and feet in Epsom salts followed by vinegar and water 1:3 ratio to hopefully prevent nail infections. The vinegar ratio is what is recommended to sanitize my CPAP equipment, so I figure it will be effective as long as it feels ok on my skin.

Really interesting following the TE conversation... I haven't seen a PS yet, and figure I'll deal with one aspect of treatment at a time since I won't be done with rad till mid December. I have to admit, at my age (55) and after nursing 3 kids, getting a covered "boob job" with perky, slightly larger than my natural small breast size has been one of the positives of this BC experience, and I'm really looking forward to that!

Kritti, your PS sounds hilarious!

Willow22

Welcome Tye89! You sound prepared - the only things I would add are:

- icing your palms and soles of feet to prevent neuropathy

- doing baking soda and salt water rinses after any food or drink (1 tsp salt + 1 tsp baking soda + 1 cup water). Mix it daily in a container you can seal, shake before pouring into a separate cup, swish in mouth then spit out. I was diagnosed with thrush after antibiotics, and after checking if i had mouth sores, theychecked to make sure i was doing this.

I think it's handy to have these items for neutropenic precautions:

Small disposable cups for the bathroom, new one daily or more often as needed.

Sanitizing wipes for door knobs, light switxhes, faucets, toilet handles, etc - weekly + as needed

Disposable food prep gloves for handling raw meat, wiping down surfaces, etc

Basic bowel care meds for constipation or diarrhea - whatever your MO recommends, since it seems like the majority of us are posting issues with one of these, and as Paulette just posted, she had 2 diff issues following her 1st 2 rounds 😞

rdeesides

Can someone explain icing hands and feet a little bit more? I'm a visual learner and can't envision how this is done. My infusion center doesn't have a freezer so I will have to bring in a cooler and supplies. Do you only do the ice for the Taxol part of the infusion or the whole infusion? And if your hands are covered in ice, what do you do while getting the infusion? You can't read or use your phone, right? This sounds like it is going to suck. And I'm really disappointed that the infusion center doesn't help with this. It seems kind of important!

-

Willow22

rdeesides, i only ice during my taxotere, which is an hour. The ice machine at my infusion center is currently broken (has been since my 1st session on 7/28). I think normally, they would give me bags of ice with a towel wrap for hands and feet, so I wouldnt need to bring anything, but safest to chexk with your MOs office just to be certain.

If i werent capping, i would listen to music or a pod cast, but instead we watched tv and chatted.

Willow22

I made sure to use the restroom before starting the taxotere so I didn't have a long gap, but I think its fine to pull a hand out to quickly flip a page.

Willow22

rdeesides, i only ice during my taxotere, which is an hour. The ice machine at my infusion center is currently broken (has been since my 1st session on 7/28). I think normally, they would give me bags of ice with a towel wrap for hands and feet, so I wouldnt need to bring anything, but safest to chexk with your MOs office just to be certain.

If i werent capping, i would listen to music or a pod cast, but instead we watched tv and chatted.

I made sure ro use the restroom before they started the taxotere so i didnt have a long gap, but i think its fine to pull a hand out to quickly turn a page.

Clearpath

Hi Kritti - it's been a few weeks since my last pump. I have also had two fills since surgery. I'll see what they say on Monday. A visit to the PS requires me to go into Manhattan which is a bit of a trip so I will probably get a fill once I am there unless they advise otherwise. However I like going to the city (used to commute in for wor until I was diagnosed). I need to be fully expanded before rads. Your PS sounds like a riot!

ang006

Glad to continue to hear from everyone - we are one strong group of ladies!

This is Day 7 for me after AC#1 and I feel pretty good. I haven't lost any hair yet although just felt more than usual come out in the shower. I have had pretty consistent stomach discomfort - a combination of heartburn/constipation/gas, but keep trying to add fiber to my diet. Days 2 and 3 were steroid induced energy (and appetite), but I crashed on Day 4 and slept most of the day. I don't like the way the Zyprexa (which I take for 4 nights after each treatment) makes me feel but I didn't have any nausea so I guess that is the tradeoff. It makes me very foggy.

I keep walking every day and drink a lot of water. I think that has helped me a lot. I am interested to see how I tolerate the next treatment, but am inspired by each of you.

TYE89, welcome! It sounds like you have a lot of really good information and are going into this with a strong focus.

Leatherette

Hi,

I had my first THC on July 25. I wanted to answer Kritti's question about wine......I was told one glass a week. My sense of taste was haywire the first week, I tried a sip of wine a few times, and it tasted like paint thinner. Now that I can taste things again, I have very painful sores in my mouth, so wine is a no-go. So I just quit cold turkey, and may just give it up entirely until I'm done with chemo and my mouth works again. I may have been liking my wine a little too much post-diagnosis-prechemo, so maybe it's for the better.

I thought the Taxotere was the problem, but if Kritti is on it too and wants wine, maybe it's the carboplatin or herceptin?

sunnyjay

Clearpath, my PS wanted me to come in weekly to get filled at 50cc at a time. I'm usually tight the day of and a day or two after, but then I'm fine. During my first 2 expansions my Hubby drove me so I took a pain killer hydrocodone (left over from my surgery) and it helped with the soreness. The next time I drove myself and took ES Tylenol prior. It took a while to kick in but helped somewhat.

She wanted me to get filled as much as possible before chemo started. So I had 5 expansions so far all at 50cc and 1 at 40cc (the 3rd time since I told her I was in pain after the first 2). I'm supposed to go to 500. She wants to overfill since I'm doing radiation and said their may be shrinkage. She doesn't like it to be a painful experience for me so she is willing to go less or skip a week if I wanted. But I'm able to tolerate the higher cc as long as I take Tylenol. I just can't carry my purse or sleep on that side.

I haven't had a fill in 3 weeks since my PS has been on vacation (how dare she!). I have the next one in a week and a half, so we'll see how that goes.

Kritti

Leatherette- thanks! My mind says I want wine, but now that I really think about the taste, I'm pretty sure it would make me gag. Gah. My taste buds have been royally fucked since day 2, I really hope they go back to normal eventually. I was definitely drinking too much post dx/pre chemo.

PSA - today I picked up lemon Oreos and they taste heavenly! So far those and York Peppermint Patties are the only things that taste GOOD. Everything else is either palatable or disgusting.

Clearpath - you know, it might simply be because you've got something to compare it to that your expander feels so foreign. Mine feel weird and totally wrong, but they're both that way, so I'very kind of forgotten.

Willow22

totally with you guys on whining about no wine. We have a deck with a wonderful view and new fire table, just made for curling up with a glass of wine and chatting ☹️ With my counts and fever, wine is out, so I've been putting my Powerade in a champagne flute to make it a little special.

Kritti, I really like the tangy flavor of Outshine lemon popsicles.... very tart, not very sweet and refreshingly natural tasting. I just got boxes of raspberry and watermelon but haven't tried them yet. If lemon Oreos taste good to you, maybe this would too

teaspoons

Whoa Kritti - Lemon Oreos and Your Peppermint Patties sound awesome to me! I just added them to my grocery list

I have expanders on both sides as well. I have only had one fill since my surgery before my PS went on an extended vacation.They don't seem too concerned about the length of time between expansions, so I'm not going to worry about it too much either. I've got five months of chemo before rads, so plenty of time to do it nice and slow .

sweetp6217

Welcome to our August group TYE89, sorry to hear that you're in that TCHP boat. Me too.

Hello gals,

This is day 14 of my first TCHP cycle, 1st of 6 to be followed by H & P for the rest of a year (after possible lumpectomies in November). I thought that I was out of the woods with that dratted "D", but alas, one made it's appearance this morning. I can't find my lump anymore, which is good news, never could feel the lump(s) in my lymph nodes. Had bracycardia symptoms last couple of days, but hasn't continued; BP was fine. I have to get my hands on an oximeter.

Also on the bright side, my taste buds are almost at 100% and I narrowly escaped having to be treated for thrush. Thank you Biotene Dry Mouth Rinse! After working a longer shift though, the lower legs are a bit swollen; gotta get the feet up. One of my co-workers who had (as it turns out) the exact same thing as me, but 4 years ago doesn't know how I can work with this. She didn't have my bathroom SE but took off for her treatments; everyone is different. As for work, I can't pay the insurance if I'm not working and I just got a peek at the chemo charges; think of the cost of a house. Thankfully, there's a coupon for the H&P parts of treatment.

Tomorrow, I'll be meeting with a volunteer at the somewhat local ACS Boutique to try to pick out a wig perhaps. Good timing. Hair started dropping today. Hopefully, I might get a tip or two on how to cover up those adolescent looking cheeks, etc. (better than I have til' now). I managed to make that a tad worse by using my handy Vick's Steam inhaler to combat my ever drying sinuses. The steam seems to help the blemishes bloom. Yippee! May as well eat cake.

Anyway, sorry. Kritti, I hope your taste buds come back quicker than mine. I can recall that there were days that I just didn't want to eat 'cause of not being able to taste it. Lost 9 Lbs, but am gaining it back.

Hugs All!

sunnyjay

Funny you gals mentioned not being able to drink wine. The week after my biopsy, my girlfriend's Bach party was wine tasting in Sonoma & Napa! Of course I went crazy and bought several bottles... Haven't had a chance to open any of them but will most likely gift a couple of them to friends & family that have been helping us during these times. I did have a few sips of champagne at my sister's wedding last weekend during the toasts, and it just tasted like table champagne, so nothing terrible tasting.

But I think I'll hold out on the wine and maybe save it for the holidays... Hopefully this will be all over by then and will give me a reason to celebrate!

Kritti, thanks for the PSA on lemon Oreos. My DH loves Oreos but hates lemon. I love both so I think this will be a snack I can have all to myself! Ha!

Well, tomorrow is infusion #2 for me. I started taking Claritin yesterday, hoping it will ease the terrible bone pain I had the last time. Since I'll be on steroids, I scheduled all my errands for the next 2 days. LOL Praying that all goes well with SEs.

PauletteK

Woke up with heartburn that is something I totally didn't expert at all. It's day 7 for me so should be a good day and I am going to do blood test today also.

Talked about taste buds OMG the first few days after chemo nothing taste right not even water. It's so hard to put anything inside my mouth. Only think I can barely eat is salty food.

DonnaC123

Hi,

My name is Donna, I am 64 yrs old and start chemo Aug 16.

I had a local occurrence of invasive ductal,a bump directly on my lumpectomy scar, that for 6 months they told me was benign. I said, just remove it anyway and it turned out to be cancer. That sure was a lesson in listening to my gut feelings. The first occurrence, I did lumpectomy and rads and antihormone, No chemo.

So next week chemo begins and I sure could use moral support too. I have sought 3 opinions on chemo treatments and each MO came up with a different regimen! They all agreed I needed to do a right side mastectomy, which I did June 20. No recon.

The chemo regimens recommendations were:

AC/T, AC/F, T/C. Then, my main MO wants me to try the Dignicap, so he sent me to the only local hospital that offers it, so that MO had to see me and HE recommended AC/CMF !!! So that is a fourth kind. The reason for the varying recommendations is that I have neuropathy already from an old Lyme Disease infection that did nerve damage so two of the docs think I should never do a taxane,as it will make the neuropathy worse.

Anyway, this last doc with AC/CMF said I would do LESS Adriamycin(since I am worried about heart issues) but adding an additional chemo agent that he thinks would better my chance of knocking out rogue cancer cells. So, the docs are discussing it and I am researching it.

QUESTION....HAS ANYONE DONE AC/CMF ?

So, I am doing Dignicap, really on the recommendation of my MO but, they tell me only about 22% of people on Adriamycin keep their hair. So, if it falls out, I will just stop the Dignicap. This chemo ctr also offers the cold mittens and booties. If anyone has done dignicap and adria, would love to hear from you.

QUESTION....I WAS TOLD CHEWING ICE CHIPS OR POPSICLES DURING TREATMENT HELPS WITH MOUTH SORES, HAS ANYONE TRIED THAT?

Paulette, I had heartburn during radiation and the dietician had me drink KEFIR and it worked very well for me. It is a yogurt like drink but with way more probiotics in it. If you are lactose intolerant,it also comes lactose free. I make smoothies with it daily. It is very good for the digestive tract.

A tip on nausea that was suggested by the homeopathic doc that works with my MO. Use those sets of bracelets you wear for motion sickness. You can get them at the pharmacy and they are sometimes stretchy terrycloth. She said they work great for nausea.

Best to everyone,

Thanks, Donna

dinahmagic

Hi everyone,

I'm new here. Started chemo late July. I'm on day 14 of AC-T for invasive stage 2. Double mastectomy after chemo. I thought losing my hair would be nothing but now that it's coming out in my hands I'm overwhelmed with sadness. I know it's silly in the scheme of things. One day at a time. Feeling quite good overall. One more week till infusion #2.

Clearpath

Hi - welcome to our new members.

Feeling ok today (day 8 after first AC infusion) except woke up with back pain (moderate) Suspect the Neulasta. Took Tylenol Extra Strength and Claritin, hope they work. Haven't been too productive today as a result

I also like the Outshine popsicles - I bought the fruit and tea assorted version and they are excellent.

rdeesides

Question for you experts. I anticipate starting chemo next Thursday. I have an appointment for a wig fitting next Saturday. Have I lost my mind? I won't need to do anything else on Sat except go to the wig place, but do you think I'm overzealous?

Thanks,

Rebekah

sunnyjay

Rebekah, that's day 3 and you'll probably be still taking the steroids so you should be fine. What regimen are you taking? I'm on Cytoxan & Taxotere, and other than nausea I didn't have any other major side effects on Day 3. After my first infusion I took a morning walk and stayed home for most of the day, expecting some side effects. I took an afternoon nap and was fine. Had a little nausea and took Compazine and it went away. If that's all you have that day you should be fine. Hope this helps!

rdeesides

Thank you Sunnyjay!

If I am going to try to work through chemo, do you think I should back chemo up to Wednesday? So that Sat/Sun can be recovery days?

I THINK I am starting off with weekly Taxol and then doing AC. That is backwards from a lot of people and I am not sure why. I am also going to beg dr for Carboplatin but so far she hasnt offered it.

starfisher

Hi all,

I've been a lurker on these boards for a while, but wanted to finally pop in to reply to Rdeesides. I started weekly Taxol in July and will be following it with AC: 12 rounds of Taxol, then 4 of AC every other week. Should be finished late November. It's just the way some centers do it! I think for many people, Taxol is better tolerated (of course, for some it's the opposite), so maybe they do it so you aren't recovering from AC while continuing on to Taxol, but that's just a theory.

I just finished Taxol #5. For the first three, I had a steroid with my premeds and ended up with side effects of heartburn and fatigue 3 and 4 days after treatment. My MO gradually stepped down the strength of the steroid with each treatment, and I didn't have the steroid with #4. The week from #4 to #5, I had zero side effects. I mean, nothing. Felt totally normal and healthy. And so far so good for #5. So I think the side effects were only from the steroid and the crash. Moving forward, I won't have the steroid for the rest of Taxol. I hope you have an easy time with Taxol first!!

rdeesides

OMG Starfisher that is awesome! I have heard Taxol is easier to tolerate. Good to note on the steroids. I am going to ask about that. Are you icing? Im glad someone else is doing Taxol first too, makes me feel less like my MO is not doing it right! Haha. I actually trust my MO but havent had a chance to ask her why she wants to do it that way.

Where are you in Cali?

R

PauletteK

Hi to all the new comers, Donna thanks for the tips I will give it a try, I was a bit surprised for me with heartburn this morning, first time. Good luck to find the right treatment we are here to support each other.

Starfisher- nice to know we can have taxol without steroid, from what I known steroid could help us on the energy level but gave us different SEs.

Redee - I lost most of my hair after my second chemo will be shaving it off tomorrow. I know it would be hard for me to say goodbye to all my hair, but I'm really tired of looking at myself with the little hair left. 😥

rdeesides

Paulette,

I am very attached to my hair and my boobs! And I am going to lose both of them! I decided that I can at least take charge of the hair thing. Gonna have the wig lady shave my hair into a buzz cut to match my husband. Lol. Not just yet though... will wait until I get to the 2nd chemo since that seems to be when it starts to fall out. I also thought about dying it a crazy color just for fun since it's all going to fall out anyway. Dont know if I will do that or not though. Maybe I will get a crazy wig to go with my normal one. I am thinking a purple one and my 9 year old wants one to match. Haha.

Do you have a wig or some caps ready to go?

R

BlueGirlRedState

Sorry you are going through this. I finished 4 rounds TC at the end of October 2016, and bilateral surgery end of Nov 2016. End of March I started aromotase inhibitor - anastrozole. Check out Stephanie's Terrific Tips for getting through Chemo. I learned about cold-capping on her list (check out cold capping forum) for reducing hair loss. I drank lots of water/herbal tea/very diluted fruit juices. Maybe not 13 cups/day like she did, more like 10. Used a salt-water/baking soda mouth rinse to prevent mouth sores ( I did not get any, rinsed 4-5 times/day), and exercised every day - even on days when I felt awful and could hardly get off the couch, I would at least take a short walk. I exercised regularly before the cancer, so it was easy to continue. She also had tips for preventing/reducing neuropathy, boredom during treatment etc. Good luck to you.

BlueGirlRedState

Willow, I am sorry you are going through this. I finished 4 rounds TC at the end of October 2016, and bilateral surgery end of Nov 2016. End of March I started aromotase inhibitor - anastrozole. Check out Stephanie's Terrific Tips for getting through Chemo. I learned about cold-capping on her list (check out cold capping forum) for reducing hair loss. I drank lots of water/herbal tea/very diluted fruit juices. Maybe not 13 cups/day like she did, more like 10. Used a salt-water/baking soda mouth rinse to prevent mouth sores ( I did not get any, rinsed 4-5 times/day), and exercised every day - even on days when I felt awful and could hardly get off the couch, I would at least take a short walk. I exercised regularly before the cancer, so it was easy to continue. She also had tips for preventing/reducing neuropathy, boredom during treatment etc. Good luck to you.

starfisher

From what I've read here, every center and every MO is a little bit different in their approach! And, of course, every person's body and lifestyle is different, so there's really a broad spectrum of experiences.

I'm cold-capping but not icing my hands and feet. I keep nail strengthener polish on my fingernails and toenails. My MO suggested Glutamine and L-Carnitine to help prevent neuropathy, so I take those (and other supplements) on the 4 days a week that aren't the day before, day of, or day after my treatment. I also do acupuncture and massage, and get a good amount of exercise (walking every day; light running 1-2 days a week, light strength training 1-2 days a week), so I think all of that helps. Also do baking soda + salt mouth rinse twice a day.

I still have 11 treatments to go, though, so we'll see how things continue...