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August 2015 Chemo Group



  • KateB79
    KateB79 Member Posts: 555

    Queen Celeste, I'm feeling pretty good right now. I'm in a sort of steroid-induced high/fog (the sleepiness wore off), but functioning. Tomorrow is the first infusion (SIX HOURS in the chair!), but I'm ready to get this started--and finished. Thanks for asking! :)

  • SoCalGrl
    SoCalGrl Member Posts: 59

    Hi all!

    Looks like I'm joining you. I thought I would skip chemo until my Oncotype came back at 22 - the dreaded gray area. I'm 40 years old so my Oncologist wants to be aggressive, so TC x4 it is.

    My first infusion is on August 19th. I am going to try the fasting some recommend based on Dr. Longo's studies, and I also just ordered my penguin cold caps to see if that helps at all.

    I hate that we're all here, but am thankful for ladies to share the journey with.

    - Sandy

  • Lovestrees
    Lovestrees Member Posts: 4

    Hi, ladies, I am starting August 19, just one week away. Not really sure what else to say, or exactly what to expect, but glad to have some new friends for the journey.

  • buzz328
    buzz328 Member Posts: 17

    Has anyone ordered any hats or scarves from the American Cancer Society's TLC site? If so, I was wondering how long it took to get your order?

  • superius
    superius Member Posts: 310

    I did. I ordered the sleep caps, the hat/wig covers (both are 2/$12). & 2 hats - a page boy hat & a hat kinda like fisherman hat.

    So far I used the sleep cap, including daytime (to catch my thinning hair) -- don't like it. elastic too tight. last night, I used a pillow case as a hat, tie the extra part with a hair tie & it's more comfortable (& it stayed put!) I haven' try the hat/wig cover. But the page boy hat is too tight & kept riding up -- suppose to have full coverage (it says average size), & my stuff animal ended up wearing it & being too cute! I also use the express shipping & paid $14. I think i got it in 3 business days. disappointed with my purchase. :(

    I ended up getting another fisherman hat from regular clothing store -- the rim is big enough to hide the hairline & it's cotton. & couple straw (paper) hats for church. I also ordered some cute skull caps/ surgical cap from Sparkling Earth (someone mentioned it on this site), some of them on sale as low as $3!

    I am not doing any wig -- I figured out this is not long term thing (will be done with TC by end of Sept) & I should be wearing hat anyway (fair skin, thin fine hair).

  • buzz328
    buzz328 Member Posts: 17

    Thanks, Superius! I'll check out the Sparkling Earth site. I've already ordered a wig from a shop, but I definitely need something for around the house. I also found a lot of youtube videos showing how to tie scarves, so I'll hold off on ordering from TLC for a while.

  • mama-bear
    mama-bear Member Posts: 26

    Hi Eeveryone,

    I start chemo Thursday the 20th. I am terrified of being sick, but dealing with it. I only have to do 4 rounds and then 12 weeks of taxol. Did any one know if hair grows back during taxol? The dr said that was a possibility. Just wondering!

  • Suzanne50
    Suzanne50 Member Posts: 221

    Hi Sandy - I just did my first round of TC with penguin caps. When you go, you will need moleskin for your forehead. You can get it in any drug store. They also put panty liners over the tops of your ears to prevent frostbite. No one mentioned it to me so when I got there I didn't have these items. Luckily they had some extra lying around but thought you might want to go prepared. And bring warm blankets! It is cold but you head does get used to it. So far my hair remains but it is till too early to know if it will work.

  • cah21
    cah21 Member Posts: 9

    i have been referring to this forum since I got diagnosed on June 2, but this is my first post. I just got my chemo start date today, it is August 20. I am getting 4 rounds of AC, every twoweeks, then 12 weekly of Taxol, followed by 12 weeks of radiation, and horome therapy for 10 years. I had my chemo class today, wow! It is a lot to take in! I have a port and they flushed it and took blood for the first time. From the way it sounds, I am glad they put my port in during my mastectomy.

    I am also scared of getting sick! I have a phobia of vomiting, so I am scared to death. I think that scares me more than cancer itself. Stupid right?? I am getting anti nausea meds so hopefully that will help.

    I am going to see about a wig tomorrow. I don't know if I will wear it or not but at least I will have it if I decide to.

    I, too, have been handling this with a positive outlook and a sense of humor, but now that the date is set and things are happening, it makes it real! I have lots of support from my family and friends, especially my wonderful husband who has been going to every appointment with me. I know the support system is there for me no matter what which is comforting.

    I just have to keep saying in my head...I think I can, I think I can.... And I will! We all will!!

  • JenPam
    JenPam Member Posts: 163

    Nice to meet you cah21, Sandy, and Lovestrees! Sorry for the circumstance. Ugh.

    buzz328--I just ordered products from TLC and paid for express (two-day) shipping. I bought a couple of caps, plus some foam foobs and a camisole with built-in foobs. I'm no-recon and would prefer to wear nothing, but my surgeon said I should have pressure on my BMX site because I have a small seroma she'd like to see go away on its own.

    Allow yourself to feel all the Monday follow-up with my surgeon was more like a therapy session, and she reminded me to allow myself to be out of control. I'm type A and very much about control, and I told her I thought if I went down that rabbit hole I might never emerge, but she assured me I'm going to experience those emotions one way or the other and I might as well choose the time.

    Kate, I'll be thinking about you tomorrow and sending you healthy vibes!

  • SDCA76
    SDCA76 Member Posts: 27

    Just cheering for those of you already starting chemo this month. I appreciate your honest sharing about the experiences-good and bad. Counting down to my first session in 5 days.

  • Sloan15
    Sloan15 Member Posts: 845

    So, I got a wig today. It's actually pretty cute, but under the circumstances... A few of my friends said they own wigs and decided we should have a WIGWAM party. We're going to go out for lunch the day after my first chemo (8/17) all wearing our wigs so I can get used to wearing my wig in public before my hair falls out. It's a really thoughtful idea if any of you want to have wigwam. My son said, "Mom, you should have picked out a red one!" My husband was no help; he kept saying, "They all look good." Smart, kind, loving man. :)

    @Suzanne50 and @sparklypink... Keep me posted on your TC treatments. Many thanks.

    The cancer doc suggested a couple of life tips worth repeating: 1) Rarely eat meat, and if you do, make sure it's hormone free 2) Hormone free milk ONLY! (and he said for me to tell my kids to only buy that, too) 3) Organic food when you can, but ESPECIALLY soft skinned food such as spinach, peaches, or anything chemicals can leech into 4) Reduce sugar and white flour 5) EXERCISE! He said that studies show that people who exercise have a higher disease free survival rate. When you're done with chemo, your immune system has to kill cancer cells. You have to exercise to keep it healthy. 6) Drink lots of water 7) Reduce Stress (stress releases cortisol) and don't let this cancer diagnosis hijack you. Have a plan for each day you are on chemo. If you feel poorly, the plan for the day might be to make broth and walk to the mailbox. On days you feel better, make a plan to walk 5 laps in the park, go to the mall and buy some shoes, and go visit a friend--just make a plan and do something.

    Let's stay positive and try to exercise (and follow these tips) each day. Who's in?

  • ksusan
    ksusan Member Posts: 461

    Everyone's welcome to join us in our exercise and well-being during chemo and radiation thread:

    We celebrate trips to the mailbox as well as mountain biking!

  • Suzanne50
    Suzanne50 Member Posts: 221

    @sloan15 - that is a GREAT list of suggestions!! Thank you for sharing that. I copied it for future reference.

    I also ordered my wig - it should be in tomorrow. Brought husband along who was somewhat helpful. I had to remind him that he was there for a purpose....for feedback. I don't like "they all look good" line. Not helpful! But we ordered two and then will pick the one that looks best. They are just slightly different in color.

    As for exercise- I am a big believer in staying active. I got into the NYC Marathon in March before all this BC happened. Every single dr told me not to give up on that dream despite my surgeries and the chemo. So I have continued to train throughout the first chemo session. Last Sunday I ran 10 miles. Running makes me feel like my old self (before BC). Running this marathon has become more important to me than ever. It has become a symbol of me beating this disease and not letting anything stop me. Not even cancer.

    So ladies - like Sloan said, get out there and exercise every day. Even if its a 10 minute walk around the block. You will feel better! When I start running I don't always feel like this is what I want to be doing but once I get going, it feels good. And when I am done I feel great. It is all a mental game.

  • Suzanne50
    Suzanne50 Member Posts: 221

    @cah21 - I am with you on getting sick. It is awful but the meds really work. The advice given to me was to stay on top of it. If you feel sick, take the zofran. Also- I think drinking lots of water helps as well. I was on Emend for 3 days and I didn't feel nauseous hardly at all. After that, I had some times were I just felt off and had no appetite but never anything really awful. So you really should be ok. My experience wasn't as bad as I pictured. I hope the same goes for you!!!

  • KateB79
    KateB79 Member Posts: 555

    @cah21, welcome. Sorry you have to be here, but welcome nevertheless.

    Today's the day! I thought of my surgery in July in a zen way: I was taming the first tiger. Today is the second tiger. (Imagine the tattoo I can get when this is all said and done!) I'm nervous, but ready to get this show on the road. . . And, over the next few days, I'll know what to expect, which means everything to me. I'll keep you posted. I know TCHP isn't a walk in the park (frankly, none of it is), but I'm hopeful that it won't be too bad.

    Here's to good drugs, staying hydrated, and exercising as much as we can. I've also started taking American ginseng (with my MO's okay) to stave off fatigue. It tastes like a$$, but if it works, it's worth it. :)


  • KateB79
    KateB79 Member Posts: 555

    Sandy and lovestrees, welcome to you too! I second the idea of making new friends along the way. It's good to have people who are battling this at the same time. We're in this together. :)

    sloan15, I'm in. :)

  • sparklypink
    sparklypink Member Posts: 17

    Thanks All for the ideas to solve the bad taste in mouth thing. I tried the Biotene - tasted great but didn't last long. Peppermint works well I think and I'll try xylitol gum (where can you find it?).

    I'm 9 days out from the first TC round and feel pretty much back to normal...for those who started just after me - there's light at the end of the tunnel!

    Go get this, ladies...we can do it! (Yes, I'm in the positive zone right now - but as we all know, we have our low - sometimes many - moments and it's OK!) So glad we can express both positive and less happy moments here!

  • Birdysmom
    Birdysmom Member Posts: 39

    thanks for starting this thread Kate! It is positively inspiring and less scary to be part of this community. I can never find the right words to say stuff, but you ladies rock!

    Received first chemo Aug. 6. It's been 1week now. I wonder if there's a correlation between side effects and tumor sizes and body size. I'm very small/short and the main tumor is pretty big- attached to skin of my boob. Right now I'm feeling "toxic," I guess all those dead cancer cells are circulating around. Drink lots of fluids! The night right after the chemo, I woke up at midnight with nerve pain around the tumor. Felt like it was being chewed on! The pain dulled the next morning & tolerable ever since. Nurse said it was the meds working- eating that sucker out of there.

    So far effects can be lived with, even at work. Feels like having the flu: achy, tired, slightly drippy nose. The constipation settled out around day 5. Have itchy, but tolerable rash around breast & lymph areas where cancers are. Scalp sore, but hair hasn't departed yet. And I drool easily, maybe 'cause inside of mouth feels like it got sunburned!

    I was afraid to get back into excersise, but reading other posts here put my mind at ease!

    I feel grumpy more than usual, but probably because loving, well meaning family treats me as if I'm going to detonate or keel over or maybe an alien might pop out of my belly...geeze!

  • Italychick
    Italychick Member Posts: 527

    sparklypink, dropping in from the March chemo group. I buy Xylitol gum from Epic Dental online, my health insurance company recommended it, and it is super minty, and stays soft, unlike some xylitol based gums. They even have a fruit flavored one that tastes like the old juicy fruit gum.

    Ladies, you have all got this! I am 2 and 1/2 months out from last chemo infusion, and feeling better everyday. Best of luck to everyone!

  • VickiRides
    VickiRides Member Posts: 163

    mama-bear and cah21 -- we're on the same schedule. I also start 4 rounds of AC followed by 12 weekly of Taxol on Aug 20. At this point I am trying to stay positive and am hoping that the side effects won't be too bad. My doctor also said that hair could start growing back during Taxol. We'll see. I'm getting my hair cut into a pixie next Tuesday to get prepared.

    Sloan15 - Thank you for the list of life tips. That is going on my wall as a reminder!

  • ksusan
    ksusan Member Posts: 461

    To add another perspective, I had no nausea on TC. I got anti-nausea drips (Emend and Aloxi) during and took one Odansetron the morning after. Each of us responds differently, so I think it's best to prepare and watch for SEs without automatically expecting to get them. Both nausea and pain are best caught early. Good hydration is surprisingly helpful for everything. Good luck!

  • superius
    superius Member Posts: 310

    Day 18 for me after first round of TC. getting picc line Sunday (day 0) because my vein are small & deep, they don't want to risk anything. The "shedding-in-process" in annoying (but almost done). Waiting for the cute skull caps I orders to come in.

    Make sure if you drink lots of water, drink Gatorade & such, & that you also EAT!!! I learned it the hard way. My friend in Radiology told her patients Ensure with ice-cream if you can't eat! Dr's order -- Eat Ice-Cream!

    KateB79: how are taking the American ginseng? If you have them sliced, you can boil tea with it. it will have bit of bitter taste. The property of American ginseng is actually cooling your body (like when you eat too much BBQ or fried stuff & you get acnes). My mom would make a tonic with American ginseng, carrots & jojoba date (good for improving blood) or goji berries - those will give a sweet taste

  • KateB79
    KateB79 Member Posts: 555

    My first update from the chemo chair!

    Superius, I got a tonic from Dragon Herbs. It's good stuff. Tastes terrible, but I'm hopeful that it'll help, especially if I crash after the steroids are done.

    Birdysmom, my pleasure. And I agree completely about this being so, so, so much easier with the support of this group.

    Happy weekend, a day in advance. Anyone have exciting plans?

  • knitnpurl
    knitnpurl Member Posts: 44

    Hi all. I'm brand new to this forum. I'll be starting chemo on Monday, August 17. I was diagnosed with triple negative IDC in June. I'm 39, married, and have two boys (7 and 4).

    Met with my surgeon in July where we formulated the different treatment paths I might be taking. I chose a surgeon at Moffitt even thought they are some distance from me, since I trust them more and I have family in town. They also did a second ultrasound mammogram to check on a second spot and my lymph nodes. They did see one enlarged lymph node. This led to getting an MRI and lymph node biopsy. The MRI showed that I had the original biopsied mass in my left breast at over 3 cm (the original mammogram had it at 1.4 cm), a secondary mass at 9 mm, and 3 enlarged lymph nodes. The lymph node biopsy came back positive. My surgeon told me that I would now be having chemo first as the cancer had reached the lymph nodes. She also scheduled a bone and CT scan to check for further growth. Fortunately both of those came back clean.

    In between all this I also had genetic testing and I'm negative for BRCA 1/2. We did the bigger panel, including all the genes they know of that also have a moderate risk, and I'm negative for those too.

    Since I don't live in Tampa, I will be getting chemo here locally and had to find a medical oncologist. Easier said than done. The first place I called, which is one of the larger medical facilities in town and I've dealt with them on other health issues, still hasn't called me back to scheduled a new patient appointment. When I mentioned the problems I was having with them, my nurse at Moffitt, she suggested another practice. I was able to schedule an appointment with them within a day. I met my doctor yesterday and felt really comfortable with him and the staff.

    I'll be doing 4 cycles of AC followed by 4 cycles of Taxol, all on 2 week intervals. Of course, i'm terrified of starting chemo but I'm more tired of waiting and tests and ready to attack this thing.
    eta - added a few sentences.

  • mama-bear
    mama-bear Member Posts: 26

    getting my port put in tomorrow. Kind of nervous about that. Also had a TE fill today. So I am sure this weekend will be uneventful! Going to go pre-chemo shopping to stock up on a few items! Yay chemo!!!! Kill those cancer cells!!!!

  • Sloan15
    Sloan15 Member Posts: 845

    @knitnpurl, I'm with you: I'm finally at peace with my decision to have chemo because all the test results are FINALLY back. I was stressing out by having so many unanswered questions and waiting for test results. I'm starting chemo on 8/17, too.

    @KateB79, I forgot to thank you for putting together this thread. It's comforting -- definitely less scary!-- when we we take this journey as a group.

    I'm going to visit my dad this weekend. We're going to do some hiking. He needs to see me "healthy" going into this chemo. He was shocked when I told him that the doctor said the nausea and vomiting can be controlled. He remembers the "old days" when my mom couldn't get out of bed/bathroom for a week. He's scared, too.

    Did anyone try fizzy water (carbonated) when they felt tired and nauseated? Did it work? I just remember getting it as a kid from my Italian mom and grandmother when I didn't feel well. I guess it would be like people wanting ginger ale or 7-up, but not sweetness. I'm just wondering if anyone has success with that.

  • Tam-iam
    Tam-iam Member Posts: 55

    I see our list keeps growing. Welcome to the new ladies! I'm sorry you have to be here, but so glad we have each other. And thanks to all the pros from older threads for popping in with encouragement and advice. It is so appreciated!

    Mamabear - I had my port put in today and it went very well. I may have dozed off the few times dying the procedure, but mostly I was awake. They gave me enough happy stuff to keep me relaxed and comfortable. A few hours afterward, I needed some ibuprofen and that has lasted me the rest of the day. I'll take some more shortly when I go to bed. I have found that placing ice packs once in a while over the area is helping reduce soreness and just feels nice. I know everyone's experience is different, but for me, this was so very much easier than the lumpectomy. Good luck tomorrow!!!

  • SoCalGrl
    SoCalGrl Member Posts: 59

    Thank you ladies for the warm welcome. :)

    - Thank you for the tips! How are you doing overall? Was it tolerable?

    Anyone here icing their hands or feet during treatment?

  • JenPam
    JenPam Member Posts: 163

    Welcome to the group, knitnpurl!

    I buy my peppermit xylitol gum (and everything else) on good old A*mazon Prime.

    I met with my oncologist yesterday and we changed my treatment plan. I'll be his very first patient receiving Perjeta adjuvantly! Apparently only a few insurance companies cover it on an adjuvant basis, and I'm lucky that Kaiser is one of the few (and I'm also lucky to be working with the chief of oncology, who approved the new plan). So instead of weekly Taxol and Herceptin for 12 weeks after my AC treatments, I'll be having Taxotere & Herceptin & Perjeta every 3 weeks for 4 treatments. The move to Taxotere was done according to protocol for clinical trials of adjuvant Perjeta. One downside is that I'll need another four weeks of daily Neupogen injections (in case you're keeping count, that will be a total of 56 injections...but who's counting?). But if this revised plan can reduce the rate of recurrence--and who knows??--then I'm game.

    I agree with staying on top of the nausea and pain. I proudly told my oncologist that I hadn't used pain meds in days--not even Tylenol or Advil--and he said, "You don't get hero points for not taking medication." Good point! I tend to be very medicine-averse, but that's sort of ludicrous in the current setting, right?

    mama-bear--good luck with the port placement! Mine's a week out, and I hardly notice it. Of course, I avoid looking at or touching it, so there's that... ;)

    Tam-iam--glad your port placement is over & it went well!

    Sloan--I have carbonated water to supplement the dreaded regular water. I enjoy it, though I can't down it as quickly as I can when it's non-carbonated. I like having the fizzy water with meals and snacks. You can squeeze some lemon in it or get the naturally-flavored ones. My husband found me some carbonated water with raspberry and lime, and it's tasty.

    SoCalGrl--I received the okay from my MO yesterday to try cryotherapy during my taxane (Taxotere) treatments. He likened it to going to church (i.e., faith-based approach), but I'm relying on past and current clinical trials that indicate a reduction in neuropathy. In any event, it's a non-invasive approach, so even if the effect is purely psychological, I believe it's worth a try. Were you planning on using the Elasto-Gel mitts & slippers or something else? I'm still unsure what method I'll use.

    This weekend promises to be relatively slow. I feel well enough to go out, but I'm at the nadir of my meds & should avoid crowds. So much for my plans to have a nice restaurant meal and go to a show.