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Anyone starting chemo August 2016?

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Comments

  • Scarysadday
    Scarysadday Member Posts: 27

    hi all, just confirmed I will be starting aug 8, I have decided on AC+T, PICC line out in on Friday....I am getting the pre chemo blues...feel like everything will change once chemo starts....no turning back...I really really hope I'd made the right decision...will definitely lean on this group for support.

    Good luck to all of us....hugz

  • WenchLori
    WenchLori Member Posts: 1,027

    nyc1980, thank you for the encouragement! I can't tolerate water of any kind so I'll be bringing fruit juice and tea with me on Friday. When did you start taking your antinausa meds? I think I finally have them worked out on a reliable schedule. If not, I'm sure I'll know right away :-)

    Karey59, I was told to bring snacks and something to drink while I'm there. I'm bringing some bland things just to be on the safe side. Crackers, nuts, original Pringles, pretzels that kind of thing. I asked about sneaking in a margarita or two for the road and they said ABSOLUTELY NOT!! They told me I'd have blood work done first thing, and to have my ride take me to breakfast as they wait for the test results which take about 45 minutes. Once I get back they'll contact the hospital across the road from the Oncology suite and they'll mix my wonderful cancer blasting cocktail and have it delivered right to "my door". Aweee, I'm so special! lol

    Let's help keep each other's heads up and march forward with a "Smiling but Oh Crap" look on our faces. I'm terrified but smiling! I think it's a smile??

  • darab
    darab Member Posts: 894

    Does anyone know of someone who did this without a port or picc line?

  • darab
    darab Member Posts: 894

    Scarysaddy, we will start of the same day, Monday. I see you're getting a Picc line in on Friday. I have a call in to the onco nurse to talk about that option again. My MO said if my veins are good, he'd prefer not to use a port or pic, but last time I had a blood draw, it took two tries and the bruises lasted for 2 weeks. Since we have to have blood draws right before, I'm thinking maybe a pick line is the way to go. I'm going out to get stuff for my bag, and finding my stomach, demeanor, stress level is finally showing a bit. WenchLori, glad your port went smoothly. I laughed at the picture of them all walking in rubbing hands!

    Hang on everyone, I think we're in for a wild ride! Dara

  • karey59
    karey59 Member Posts: 49

    lori wench. Thanks for the advice. I think i will just bring some extra snacks and drinks . nurse told me they have sandwiches there. I will be there about 6 hours. Yikes. Im still weak from hysterectomy 2 weeks ago. Somebody was asking about free wigs i got a real nice one at the cancer society Just call local office they had a wig room there. Go in and try on. Praying for every one and trying to stay strong!!

  • Hopefloatsinyyc
    Hopefloatsinyyc Member Posts: 97

    Karey you are so lucky you found a nice wig at your local wig bank! Mine had a terrible selection- nothing close to a style I wear or would consider wearing! I ended up buying a full wig (natural hair) that looks just like my hair now... Which I will use for work and events... And then one of those halos you wear with scarves, and one that is attached to a ball cap for quick use.

  • fireheart438
    fireheart438 Member Posts: 85

    I just joined this site and this is my first post. I am to start my chemo August 12 providing the surgeon and plastic surgeon clear me at my visit tomorrow. My original lumpectomy diagnosis was right breast DCIS. We did a relumpectomy to get cleaner margins, and I was to begin radiation. But the surgeon still wasn't happy that she got everything with the relump. So I said enough was enough and I'd go for a bilateral mastectomy. I'm oh so glad I did because it was that July 13 mastectomy that led to the discovery of a 1 cm area that was Stage 1. Had I not gone the "drastic" route, perhaps this would have gone undetected and untreated. Feeling overwhelmed at being HER2+, but preparing as best as I can. Already cut my hair short and bought a few hats in anticipation of the hair loss. I figure if this is going to happen I may as well rock a new style and make the best of it. So glad to have found this site and looking forward to connecting with people here.

  • MaddieH
    MaddieH Member Posts: 3

    Dear Loriwench,


    I already had cancer. Totally 'cured' or as 'cured' as you can get. I had stage IIA, so I had a lumpectomy, chemo, and radiation. Can I give you a suggestion? Make notes of questions to ask during the class. Ask about whatever you need to on your own. I'm sure you have lots of questions. Also ask about resources that exist in your health care system. Eg., mine offered a free wig. Yours may be different.


    I had four infusions of AC. No big problems. Only some nausea and the obvious hair loss. I didn't bother with a wig. I figure the way I look is other people's problem. I was then to have four infusions of paclitaxel They give you stuff for the nausea, but except for the anti-emetic they gave me with the infusions, I didn't take it. I don't experience much nausea. However, I started to get numbness and tingling in my hands and feet after the paclitaxel infusions. I told my Onc., but she just nodded and said nothing. Explained nothing. Offered to change my schedule, but didn't explain why You are getting a taxane. I now have CIPN - chemotherapy induced peripheral neuropathy. I am 73, so at least I don't have to work anymore. There is nothing they can do for CIPN. I got occupational therapy. I take neurontin (gabapentin) for it. I don't have pain with my neuropathy. Just loss of sensation and proprioception. But at my age, proprioception is important since if I fall, my bones are older than yours and could break easier.


    PLEASEPLEASEPLEASE, do prior research on all the drugs you will be getting. Use your google. And this goes for anyone out there who is newly diagnosed. My oncologist refused to order the Oncotype DX test for me, finally telling me to 'order it yourself'. I changed Oncs., but I couldn't change health systems in the middle of cancer. Also, research the aromatase inhibitors. Make SURE you read the side effects. I stopped taking mine. I had too much joint pain. And the estrogen produced by your adrenal glands and reduced by the AI has important functions in your body. It supports bone health (they have even more pills for that), joint health, and COGNITIVE FUNCTION.


    Don't let this happen to you. If you have cancer, you have to become your own oncologist.


    Wishing you the best. I have every confidence you will have a good outcome.
  • Hopefloatsinyyc
    Hopefloatsinyyc Member Posts: 97

    welcome fire heart! I'm glad we can all be here for one another. I was told the chemo class offered here isn't really about my personal treatment, but more about where to go that day, where to find things, what will happen at transfusion (generally speaking since there are many protocols), and more about feeling comfortable about the process and less about ones actual treatment plan. I agree that we all need to be advocates for our own health and treatment plan and to be active in decisions or at minimum understanding.

    Thanks to this site we are all so far ahead of the game. The support and knowledge found here is invaluable. Thank you sooo much to all of you - couldn't do it without you!

  • nye1980
    nye1980 Member Posts: 15

    WenchLori, I received Nassea and Emend via IV and I asked my MO for Zofran, but he was so sure the Emend would take care of it. He was wrong. That first night was spent heaving and throwing up and I went in to pick up my Zofran the next morning. I had that and one more medicine (whose name I forget now), three times a day, and I never had nausea again. I actually stopped taking my meds the same time I stopped my steroids (three times a day for three days after Chemo Day). This time around the MO is giving me Aloxi and Emend, but I have my other meds already so will take them immediately after infusion and as scheduled for the first few days.

    I've had way more trouble with constipation and diarrhea, to be honest. So this time I'm going to make sure I take Milk of Magnesia or Senokot immediately so I don't fall down the rabbit hole.

  • WenchLori
    WenchLori Member Posts: 1,027

    I've been given Ondansetron 3x a day and Prochlorperazine 4x a day. I'll take it even if I don't need it. I had a Nissan Fundoplication done in 2013 so I can no longer throw up. Many hours of dry heaving is not n option for me :-) I'm praying I won't need it tho!

  • Scarysadday
    Scarysadday Member Posts: 27

    DaraB, if you are doing TC 4 rounds u likely don't require a PICC or a port. My MO wants me to do the PICC thing because of AC (or FEC which was another option for me).as per my MO, AC and FEC are extremely toxic, just in case it's not 'aim' right, might burn my skin...etc.

    On a side note, is Iceing and chewing a piece on ice during infusion necessary for AC? My clinic say no and they will not provide anything during the AC part, but they will provide all the ice pecks and stuff for the taxol portion..any feedback would be appreciated. Thank you

  • Hopefloatsinyyc
    Hopefloatsinyyc Member Posts: 97

    taxanes are more apt to cause neuropathy, so icing is more common for protocols using them (taxol, abraxane or taxotere) but all chemo drugs have a risk of causing neuropathy... So I would ask nicely of the nurses when you arrive and I'm sure they will oblige. Mine doesn't actively offer it- since there are no proven trials showing benefit... But I believe it does help- and there are enough accounts here on these boards that it does! I have been told that I will need to ask for the ice and possibly have my chemo helper (or myself) get the ice and fill my bags (bring them yourself)! Some nurses will jump to help, and others will dismiss it as awives tail.

  • darab
    darab Member Posts: 894

    Thanks scarysadday. It's reassuring to hear about the TC. I've agreed to try the IV the first time so I guess I'll go with that. WenchLori, I've been prescribed the same anti-nausea meds as you. My husband picked them up this evening. I found the stress finally caught up to me tonight and had a mini meltdown. It's helpful hearing from some of you who have had 1+ session already. I happened to see some "accessories" like gel mitts and slippers for icing, but they seem pretty pricey- $95 for the mitts. I like someone's suggestion to use oven mitts with baggies of ice. Probably work just as well.

    Welcome fireheart! But we all wish none of us had to be here! Take care all...

  • WenchLori
    WenchLori Member Posts: 1,027

    I've got my baggies, over mutts and slippers packed. I was told I could do whatever I wanted during treatment. They have the ice and will provide extra heated blankets if I need them for the rest of my body. I will be bringing my ownfavorite "blankie" with me too :-)

  • Erdie
    Erdie Member Posts: 10

    Hi,

    I started TC chemo on July 20. Think I'm doing pretty well so far. Going for my second infusion on Wednesday, August 10. Also doing cold caps and so far (day 16) haven't lost much hair (fingers crossed).

    I cannot figure out why I can't put in any of my diagnosis etc info on my profile. Any ideas?

    I'm stage IA. I had a lumpectomy in May. Still have DCIS in 3/6 margins. After my chemo I'm going to have mastectomy and reconstruction.

    I haven't read the whole thread but I'll give you guys a few tips if you haven't started yet. In addition to cold caps I sent my hair to chemo diva and I'm very happy with my halo wig. I'm hoping I won't really need it but they are awesome definitely do it if you have 7 inches to spare. I was able to keep a bob and give them about 8 or 9 inches. My wig is actually longer than my hair. It took less than a week to get my wig. http://www.chemodiva.com/

    For my nails I've been using Jason's tea tree nail saver ( I also iced my hands and feet during taxotere).

    I had a rash on my chest starting on day 6 or so. wicked itchy for about 4 or 5 days. I started taking Claritin and I made myself a spritz of witch hazel and aloe vera. I used this ratio:

    http://pinsandprocrastination.com/all-natural-aloe... (didn't bother with special ordered the stuff from cvs had exact same ingredients)

    But what really cleared it up was put a baking soda paste on for a few minutes twice a day (just regular baking soda and water applied with wash cloth).

    I've been using therabreath mouthwash and tooth paste and xylimelts at night for drymouth.

    -E


  • Erdie
    Erdie Member Posts: 10

    sensitiveheart and DaraB I'll be doing my second round on Aug 10. We seem to have similar dx and I think you are also doing 4 rounds of TC. I had it in my left hand. It was a bit sore for about a week but feels fine now. The nurse said it's better to start lower because sometimes the vein gets temporarily damaged and you can always go up but not down.

  • darab
    darab Member Posts: 894

    Thanks, Erdie. Your experience is what I'm hearing from others so I feel a bit better. I also read that it's better to start low since they can move up, but not down with the veins. I'll think good thoughts for the 10th! Is this week better with energy and SEs? I heard the first two weeks can be a bit challenging. Did you rent the cold caps or buy them? I have a wig that I bought right after dx so I'm prepared, but wishing hair wasn't one of my SE. Thanks for the tip on the rash. I hadn't heard of that SE.

  • kechla
    kechla Member Posts: 181

    Erdie, How was doing the cold caps? Was it torture? I'm considering it b/c I want to avoid any permanent hair loss with taxotere. Also, how did you ice your hands and feet?

    Also, if you go into your profile settings, you need to change all of your settings to public (for each diagnosis and treatment.) It is on a different page than where you enter them.

    Good luck with your next treatment! I think I will be starting end of August or beginning of September. Finishing up rads on 8/17...

  • Hopefloatsinyyc
    Hopefloatsinyyc Member Posts: 97

    Kechla, I gave some tips on icing (from my chemo nurse friend) early in this thread.... It seems relatively easy. Was also told that her suggested method was colder (and a lot cheaper) than some of the girl options out there and do a better job. As for hair preservation there is also a great thread about cold capping you should check out. Lots of tips about the process there!


  • Erdie
    Erdie Member Posts: 10

    My oncologist actually told me about the Cold Caps and gave me 5 elastogels (I bought one extra on amazon). I kind of drove my self crazy trying to figure out how to do it right (cause you only have one shot). I recommend going with UK sites for guidance, they've been doing this for a long time. I still have a few days to go to know if it really worked though.

    It really wasn't that bad at all. I mean cold definitely but not unbearable. I think worrying about the cold caps helped keep my mind off the chemo.

    I only iced my hands and feet during taxotere. I had to buy 100lbs of dry ice to keep my caps cold (no fridge at my hospital but some have them. One type was just FDA approved.) I just put some ice in 4 ziploc quart sized bags of ice in my cooler so they were ready when I needed them and ace bandaged them to my feet and kind just stuck myfingers in the plastic not directly in the ice.

  • Erdie
    Erdie Member Posts: 10

    As far as how I feel/felt. I felt ok the first day (I was on decadron the day before day of and day after). The day 3,4,5 were my worst--just felt uncomfortable all the time (sitting, standing, laying down) and tired. Thankfully I slept alot. Morning of 3rd day I gave myself neulasta shot. Afternoon of 5th day I started feeling better. By day 9 I was feeling great but self quarantined because I was at my nadir (lowest blood counts). right now I don't really feel like I'm on chemo accept for the fact that my taste is a bit off and some dry mouth. Went for a 10 mile bike ride yesterday no problem.

  • Kenzielulu
    Kenzielulu Member Posts: 9

    Hi carey59, nye1980, and everyone else! Bella vista, hope all went well with tests today! Got PET back, no mets to other organs. Big relief! Start ac Monday...hoping for smooth infuseHappy

  • Hopefloatsinyyc
    Hopefloatsinyyc Member Posts: 97

    good luck tomorrow Kenzie

  • sensitivehrt
    sensitivehrt Member Posts: 310

    Good luck ladies starting chemo tomorrow. Sending well wishes your way.

  • djm71
    djm71 Member Posts: 16

    Had my port put in yesterday. Everything went smoothly. I was back home in 5 hours. I'm sore, but nothing unbearable. I have the most awful taste in my mouth though that I can't get rid of. It wasn't there before they put me under. I've brushed my teeth 3 times and tried a strong mint. Can't get rid of it. Back to my MO Monday for all my test and scan results and a start date for my chemo. I've definitely hit a "low." I feel like I've handled things "ok" to this point. A few meltdowns for sure, but for the most part I've tried to put on a good front anyway. Some hats I ordered came in 2 days ago for when I lose my hair and I guess that, combined with the fear of my upcoming first chemo, has really just put me in a different "place." Can't find my smile right now. Hopefully it's just the fear of the unknown of how I will respond to the chemo and after I do it the first time maybe then I'll snap out of it. I hope that doesn't sound whiny. All of you ladies sound so strong! You all have been such an encouragement to be just by reading your posts and tips and experiences. I'm so thankful for this site!

    Good luck to everyone who has their first treatments coming up! We can do this together!

    To everyone who has already started, you are my hero! Keep up the good work!

    Have a great day everyone

  • Scarysadday
    Scarysadday Member Posts: 27

    I feel the same djm. Havin my pre chemo blues. PICC to be put in today...and I am terrify. Start day Monday, I already got a wig...I feel like I am counting down to something really scary and good bye to my 'normal' self real soon....night sweat, weight gain, neuropathy, soreness, fatigue, baldness me will arrive soon....I can believe the day has come......with this bc deal...we have no choice but to face it....

    Good luck and hugz to everyone....

  • Kenzielulu
    Kenzielulu Member Posts: 9

    djm71 and scarysadday, I know just how you feel. To make myself feel a little better, I'm buying a shirt that says "my oncologist does my hair" and I will wear it on my second infusion, by then I will have shaved my head. Hugs to al

  • darab
    darab Member Posts: 894

    scarrysadday, djm, and Kenzie, Again, I think we're all normal. I've been positive all along, but chemo just makes it so real. Scarry, I start Monday, and last night had a dream I was wearing the wig and it started coming off, so I pulled it and underneath was thick beautiful hair. I looked into cold caps yesterday and spoke to an onco nurse at my MO. I think I've decided to forego the caps. It just sounds so involved and so many hours, plus so expensive. I understand completely why women try them, and my husband said if I really wanted to we'd buy them (there isn't enough time now to rent). But it looks like we need 5+ gel caps plus order the dry ice, etc. I know I'll lose my hair, but I think the hardest part is that it's a constant reminder of what we are going through. I know it will be OK, it will just suck big time for a while! At least we can share and help each other. Dara

  • WenchLori
    WenchLori Member Posts: 1,027

    Chemo infusion #1 almost done! Everything has gone very smooth. The pickle juice is the bomb!! I sipped as they flushed and no metallic taste. I have about 20 mins left then I'm homeward bound!

    Good luck to all ladies starting chemo soon. Sending smooth sailing prayers for everyone!

    The "Red Devil" is already going thru the other end!Very pretty pink pee lol