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Tiffany`s Twenty Terrific Tips for TC

13

Comments

  • Wildcolonialgirl
    Wildcolonialgirl Member Posts: 119
    edited October 2018

    Hi ladies,

    2018summersuck, I did 4 rounds TC and didnt try the caps, lost all my hair within 3 weeks after the first round. I did have a little anxiety about the possible permanent hair loss with taxotere, but my hair came back just fine, although it took a while (12 weeks PFC to feel comfortable without a wig). I can also share that many of the ladies in my March 2018 chemo group also had TC, and all had their hair regrow. A good friend is on chemo now for ovarian, and she is 2 rounds in using the penguin cap, shedding but still has her hair. Hope it works for you, keep the faith!

    Pebbles, all cancer treatment is so personal. But so much we find online focuses on complications and difficulties. Not as many folks without as many issues write as much (and thats kind of understandable). No one really experiences all possible SEs, and remember that even if just one person in a clinical trial reported a side effect, that side effect then has to be listed. It doesnt mean everyone experiences it. If you are on TC, take something like Neulasta for your WBC (and something like Claritin for a full week to counter the Neulasta joint pain), stay super hydrated particularly before, during and after chemo, try to walk a bit every day, and have good anti nausea meds, the TC is doable. It certainly isnt fun, and we all get some different side effects (rashes, nail issues, digestive problems). You wont feel great, you will have bad days, particularly days 3 to 5 it seems, and will need a lot of rest. But it passes. My experience was that by day 10 I felt pretty good each time.

    My decision to have chemo was not easy, but i didnt want to leave that stone unturned. I had 2 tumors, as well as a positive sentinel node, and that was what prompted my surgeon, when she called me, to say words that hit home - the "chemo is about survival." She didnt sugar coat it.

    Yes, January to June with surgery and chemo kind of sucked. But there were some good days as well, sneak-away family overnights, and honestly many days where being a little slow helped me to reflect and smell the roses a bit more. I used some of that downtime to evaluate priorities. I pampered myself, went thru astounding amounts of body lotion, and used to massage my scalp every day with different oils. When i started to feel better, I knew i had gotten through the worst of it. Then came 32 sessions of radiation with its own challenges, and again i sought lots of advice, and researched and developed my own almost obsessive skin care routine. My medical oncologist jokes that i am the queen of skin care.

    The hardest thing I found about having chemo was the fear and uncertainty leading up to it. Its terrifying. Once I started it, and got through round 1, it got easier. If you asked me if i would do it again, yes, I would. I also know chemo isnt a guarantee the cancer wont return. But we really dont get any guarantees in life, and I found it easier for me, personally, to move forward without leaving a big "what if" on the table.

    I wish you the very best in your search for the right answers for you. And if you ever want to talk realtime, send me a message.

    Hugs to everyone!!


  • pebblesv
    pebblesv Member Posts: 486
    edited October 2018

    wildcolonialgirl - thank you SOooo much for all this detail and reassurance. It makes me feel a bit better and the pending possibility of chemo, like maybe I could do it and be OK. Im glad it was so well managed by you, it seems because you also stayed so well informed and pro-active in counteracting side effects. Honestly Im going to read your post over and over again and maybe PM you once I know more next week

  • Wildcolonialgirl
    Wildcolonialgirl Member Posts: 119
    edited October 2018

    Pebbles, so glad this was helpful, and always here if you need me.  Sending you a big hug as you wait for more updates next week!


  • tshire
    tshire Member Posts: 54
    edited October 2018

    Hi Pebbles! I just wanted to pop in and let you know that the initial diagnosis and waiting for test results period is the hardest part. Once you have the knowledge and strategy for attacking the cancer, you will feel much better. The idea of undergoing chemo was so scary to me. I really didnt want to do it! But I'm glad I did because it was nowhere near as terrible as I'd thought. The best way I can describe the worst days is as a hangover. I had zero of the horrific effects that you hear horror stories about, I never even needed Neulasta. And I kept my hair, so no one even knew I was going through chemo! 

    So hang in there! Try not to focus on the scary stories and remember that lots of people go through chemo and are just fine!

  • pebblesv
    pebblesv Member Posts: 486
    edited October 2018

    @tshire -that is SOooo good to know and really great to have another positive example too. And its your forums topic that informed me about Penguin Cold Caps so thank you for that! If I have to go through chemo, I will definitely try the cold caps. It at least gives a CHANCE of keeping my hair.

    Will keep everyone posted as soon as I know more. Still nervous about chemo, but helps to know it wasnt so bad for a lot of people. And believe me, I will utilize every tip I can to try and counteract side effects!

    Pebbles

  • MiCyn
    MiCyn Member Posts: 29
    edited October 2018

    Hi ladies.. I can so relate to all your fears about chemo, especially since you are still in the process of getting your treatment plan together. I just finished my last round (Oct 2) of TC. I had read the horror stories beforehand & was absoluley terrified. It def wasnt fun, couldnt wait to be done, BUT it was doable. To me, the 1st round was my worst one. I had just about every SE you can have. I told my MO there was no way I can make it through. He convinced me, we will get SEs under control, now that we know what they are. He was right. Round 2&3 were way easier. I was prepared for this last one to take little longer to bounce back, as MO kept saying, fatigue is cumulative. Other then not having as much energy as I normally do, Im doing OK. Would I do it all over again...absolutely! I agree with what others have said.. those who have easy time with it dont post as much. Im getting ready for radiation to start soon. Im actually more concerned about long term issues from rads, then chemo. Again, this comes from all the horror stories I read about. I feel for you all. You are at the most difficult time right now. Once you get your plan in place & things get moving forward, you will be in a better place mentally. It does get easier! 🤗Cyn

  • 2018summersuck
    2018summersuck Member Posts: 21
    edited October 2018

    Hi Pebbles V,

    I cant tell you how sick I made myself the week before my chemo. My reaction to chemo was worse than the actual breast cancer diagnosis. I am 44 and I have a close relative in my family that is a breast radiologist. He knew my onco score would be one that would most likely require chemo and because of my age it just made it even more likely. Every side effect from the hair to all the more serious physical ones scared me, but I didnt feel like I would have done all I could to stop this pain in the ass disease unless I did chemo. I just finished 2 of 4 rounds and I am doing OK. Everyone is different and every day there is a little something, but I keep thinking that in 6 months or less I will feel better about all of this. I dont want to push you either way because it is a very personal decision, but if you are at all concerned just talk to other doctors and patients. Dont give in until you feel satisfied with your final decision. I am also doing the penguin caps and there are stressful at times, but it just helps me manage through one more symptom. Hang in there and best of luck!

  • pebblesv
    pebblesv Member Posts: 486
    edited October 2018

    @2018summers and @micyn - good to know Im not alone on all my anxiety about chemo and that you are making it through / have made it through OK.

    I just got my oncotype DX score today and it's 21. It shows a risk of recurrence with tamoxifen alone vs. tamoxifen plus chemo and the percentages are exactly the same with or without chemo. I'm waiting to hear what the oncologist thinks but now I think I have to make a call... and soon..

  • mjl432
    mjl432 Member Posts: 8
    edited October 2018

    Hi All,

    Thank you for all of the above info. Its been helpful. Just had my second round of TC last Friday so almost a week out. First round and this one my worst side effect seems to be headaches...anyone else have this? My MO said Advil was fine to take but headaches are freaking me out and then I get convinced that my heart is doing weird things. Of course this anxiety doesnt help, and I am trying not to take too much Ativan, just at night for sleeping, but going to try to stop doing that and just take Melatonin. Halfway(ish) and so ready to be done!

    Thank you,

    M

  • annie60
    annie60 Member Posts: 295
    edited October 2018

    I have been reading about taking Claritin during chemo. What is it suppose to do?

  • Wildcolonialgirl
    Wildcolonialgirl Member Posts: 119
    edited October 2018

    Hi Annie, if you are getting Neulasta after each round of chemo (which they give you to help keep up your blood cell count and reduce chance of infection), the Neulasta can cause joint pain (it was described to me as growing pains, you generate so many white blood cells all at once).  I also had very bad back spasms after the first round of TC.  I went from 3 Claritins that first time to a week of it for the next rounds, and it really helped.  I am not sure why, but my MO and my nurse team recommended it, and I know from this site that it has helped a lot of folks who are on Neulasta.  Not everyone seems to have the same result, but were all different. 

    MJ, each progressive round can really make you more anemic and deplete your potassium levels.  I know myself and some others on these sites found that they got some shortness of breath, etc.   Its important to keep your potassium up and get enough iron.  Your system will rebuild after youre done.  And Congrats on being halfway through!!!


  • BC2chick71
    BC2chick71 Member Posts: 7
    edited December 2018

    this is exactly what Ive been looking for! I start chemo TC this month. I go dec 10th for the "education class" they have offered me the cold caps but I didnt want to mess with it. I mY regret that later. This list is a Godsend though!!

    I had DMX with immediate diep flap (reconstruction) in 2016, then Oct 24th lumpectomy to remove tumor st same site, same breast. Re re-tested my oncotype dx score & it jumped fro. 14 to 27 so MO wants 12 wks of TC. Then rads for 6 wks. Tamoxifen didnt respond for me.

    Im getting nervous about side effects.

    Tshire were you able to work during chemo? I know many people do.


  • BC2chick71
    BC2chick71 Member Posts: 7
    edited December 2018

    thank you for this post, it is encouraging! I posted my story (short form LOL) at end of thread.

    Again thank you and I think we are all rock stars!

    Much love!

  • viewfinder
    viewfinder Member Posts: 199
    edited January 2019

    Is it possible to faint after a chemotherapy treatment(s)? Just wondering if this something a caregiver should be aware.

  • Wildcolonialgirl
    Wildcolonialgirl Member Posts: 119
    edited January 2019

    Hi Viewfinder, although it is not likely, chemo can really take a huge toll and make one feel faint, especially in what are the "bad days" after an infusion.  So it is possible.  That said, you learn what your bad days are and should really plan accordingly.  Your med onco can also give guidance as its generally in the same range for most folks.  Everyone tolerates chemo differently, but there is some consistency to the patterns.  

  • annie60
    annie60 Member Posts: 295
    edited January 2019

    I fainted after the first round of A/C. I was given nausea meds that kept me knocked out and did not hydrate the way I should have. Hard to drink when your asleep.

  • annie60
    annie60 Member Posts: 295
    edited January 2019

    I found the bags to use for nausea invaluable. These bags kept me from making a mess everywhere and kept me from killing myself getting to a bathroom.

  • Biggdan
    Biggdan Member Posts: 2
    edited January 2019

    Hello, my wife had her second round of TC on NYE and began having severe hives about day 10 that itched considerably. After intensive doses of Benadryl which only somewhat helped (couldnt keep ahead of it) MO rxed hydroxyzine and steroids. After two days of this therapy the itching is finally getting better.

    The thing is, with SE being cumulative, shes fearful if after round 3 it will be worse. We are thinking of asking MO to reduce Taxotere dose but I cant figure out for the life of me, after much search, what the "normal" dose is and if she is getting a normal dose, high dose, or lower dose. She is getting 140 mg/7 mL (or 20 mg/mL). Most literature references 75 mg/m2 and I dont know if that is higher or lower than the dose she is getting. Any help figuring this out would be appreciated.

  • robinredbreast
    robinredbreast Member Posts: 49
    edited March 2019

    Ive read the Twenty Terrific Tips, done some shopping, selected my wig (and caps/hats), scoured the blogs on this site, and Im still very nervous about starting chemo. 

    I live 4 hours away from my treatment facility. Having just completed 20 rounds of radiation (went ahead and started radiation as my Oncotype results were delayed by 3 weeks), I spent the whole month away from home, ended up with a cold (or sinus infection) my last few days, fatigue set in and I was getting weary... I was so homesick by the end. 

    Now that Im home (just returned home 4 days ago), Im still sick and tired, but happy. Theres no place like home.

    While my TC chemo treatment is ordered and planned to begin the first part of April, Im seriously considering switching my MO to someone closer to home. I think I will get through it better not having to travel the distance after each infusion. Not to mention managing side effects.

    Has anyone traveled a distance after their chemo? What was your experience? Has anyone ever switched MO providers this close to starting chemo? Im not even sure anyone can get me in as a new patient in a reasonable time period. 

    All thoughts and advice are welcome.

  • mountainmia
    mountainmia Member Posts: 857
    edited May 2019

    If you havent seen this list of TC tips, take a look. Thanks, Tiffany!

  • jjpope1
    jjpope1 Member Posts: 188
    edited July 2019

    what did you ever find out about gel nails? I get my nails done and wondering can I still do it.

  • kaaadams
    kaaadams Member Posts: 33
    edited October 2019

    Love these tips Tiffany! Thanks so much! Unfortunately, the ice mitts and socks link doesnt work anymore. I am very interested in what are the best cold gloves and socks to prevent peripheral neuropathy with my upcoming (possibly 10/22/19) first of 4 Taxol/Cytoxan chemo treatments? Anybody out there have had good results? My one doc says they sell cooling head caps for $2200 of the entire 3 month use, but do not provide hand and feet cold treatment.

    Thanks in advance for any help here!

  • Vicki3
    Vicki3 Member Posts: 3
    edited October 2019

    thank you for this! I am scheduled to begin TC on 10-17 and have been researching everything that might be helpful. I was planning on getting a weighted blanket and looking at which blouses to buy for easy port access. Any suggestions on dressing for chemo

  • moderators
    moderators Posts: 7,657
    edited October 2019

    Dear Vicki3,

    Welcome to the BCO Community. Wear re sorry for what brought you here but glad that you reached out to our members for support and information. Let us know if you dont get any responses in a timely way so we can help you to navigate around and find the information that you need. Best wishes as you start TC. Keep us posted.

    The Mods

  • margo53
    margo53 Member Posts: 131
    edited November 2019

    can you post this link

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited November 2019

    Still sending you hugs for posting this Tiffany. It was very helpful when I was going through chemo in 2016. I have told many people to check out your tips. I also bring up cold capping, and many people still have not heard about it. Your post is where I first heard about it. Why is it that DRs fail to mention things they know about that might help, just because it is not available at their clinic? The clinic I went to let me do cold capping (used CHemo Cold Caps), the original clinic I was at, would not let me do this. It is hard to know wht to ask, and self advocacy gets tiring. Now I am going through round 3 of BC, and oncologist feels that each episode is "new" rather than recurrence. But when pressed, admists there is no way of knowing. So I review your list, stay active, hydrated. Ibrance is causing hair thinining. I will have to look at more fun things to do.

    2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.

    2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018

    10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?

    7/19/2019 - swelling in R-arm, opposite side from where lymph nodes removed. Noticed 6/18/2019. Could have been swelling earlier but wearing long sleeves. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. Started seeing lymphatic therapist 7/2/2019.

    8/2019 CT, Breast/chest , neck/thyroid ultra sound

    9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)

    9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery.

    10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.

  • havefaithtoday
    havefaithtoday Member Posts: 88
    edited December 2019

    Thank you all for your tips. I just found out I have to have chemo and the support and positive encouragement is so comforting right now. Thank you

  • moderators
    moderators Posts: 7,657
    edited December 2019

    Welcome, havefaithtoday! Were so glad youve already found this community to be a helpful place, and were all here for you for support and encouragement!

    The Mods

  • OnTarget
    OnTarget Member Posts: 124
    edited December 2019

    Good luck Havefaithtoday!

    There is great advice in this thread.

    I found 4 rounds of TC not as bad as I expected. I did penguin cold caps and kept 80% of my hair. 2 months out the patchy areas are growing in great.

    It is very doable! My SEs werent horrible, just annoying.

  • morrigan2575
    morrigan2575 Member Posts: 798
    edited January 2020

    Im about to start TC/HP next Wednesday (2/5/20) and i want to thank you for this list of tips and products to obtain. Putting in Amazon orders like crazy right now. Im doing the Dignicap since my place offers it, ive seen 3 MO before settling on the first one (all had same plan, just a matter of who i liked best). They say i should have good results with the Cold Caps so im hoping 50% or less hair loss.