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Tiffany`s Twenty Terrific Tips for TC

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Comments

  • moderators
    moderators Posts: 7,657
    edited January 2020

    Dear morrigan_2575,

    Welcome to the BCO community. We are sorry for your cancer and your treatment and so glad that you reached out to join here. We wish you the very best with your treatment and hope that you will keep us updated on how things for for you or share any tips that you find helpful. Here is a link to a topic on Cold Caps. Let us know how we can be of help as you navigate your way around the boards.

    The Mods

  • margo53
    margo53 Member Posts: 131
    edited February 2020

    Has anyone here had lung irritation/damage from TC? I have had 3 out of 4, and have had a cough since 2 Nd treatment that I just cannot shake..... not coughing anything up, it's just a tickle in my throat like.....mentioned it to MO and all he did was ask if I was coughing anything up..... a few days later, he sent me a Zpac which didn't help much at all.... anyone had anything similar

  • greenfairy68
    greenfairy68 Member Posts: 2
    edited March 2020

    Has anyone experienced scalp sores? Im trying to avoid any steroidal topical ointment. Its also itchy and Im trying not to scratch but going crazy and would appreciate any hints to stop the itch.

    Thanks so much!

  • Craftylife61
    Craftylife61 Member Posts: 34
    edited March 2020

    Has anyone had issues with bumps popping up on your inner eyelids?

    Yesterday I found one in each eye. I called the eye doctor and was able to email a picture. I wasnt going in since I had chemo 2 last week. Her assistant called back and told me to use the baby shampoo eye wash and warm compresses. Those have helped.

    Im wondering if my eyelids are heavier because of chemo and its causing irritation from my contacts? As it is my eyes have been wonky since my last treatment. Theyre jumpy. Makes it hard to read for long periods of time.

    I guess I will have a better idea when I put my contacts back in and see if it happens again.

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited March 2020

    greenfairy68 - scalp sores. I have had them, on/off for years, and now thankfuly off again. I do not think they were related to cancer or cancer drugs, since I experienced them years before and diagnosis. I forget what the dermatologist called them, but she said that sometimes hat wearing seems to aggravate/bring them on. She did not recommend any treatment. But they were very irritating and hard not to scratch at Also with cold in the winter and hot summer suns, I was usually wearing hats. You might ask your DR for a referral to a dermatologist if you dont have one, and maybe they will have something to help and/or be familiar with the cancer regime you are on,.

  • greenfairy68
    greenfairy68 Member Posts: 2
    edited April 2020

    Thanks BlueGirlRed but Ive never had them before the chemo. I wear a hat when its sunny but it hasnt been sunny for a while since we are in "winter." I went to my dermatologist today and she has an eye on it and well see what is causing it, if not the chemo.

  • IsMe
    IsMe Member Posts: 17
    edited June 2020

    I am just over one week from my first TC chemo. Burping is the most SE I experienced. Try to drink goner water as well as lemon grass water. But still a lot of air.

  • renbird
    renbird Member Posts: 53
    edited September 2020

    Hi OnTarget-

    May I ask... did you manage swapping out your caps alone, due to Covid? Or were you able to get help? Thank you! -Renbird

  • marie914
    marie914 Member Posts: 152
    edited October 2020

    Not sure if this is the right forum to ask this question so just let me know if it isnt the right place.

    I most likely will need chemo. I had a high risk from my Mammprint. I didnt have it in my lymph nodes when they did the left mastectomy though. I am having a PET scan next week. My tumor marker in my blood was 44 which 38 was the high end of normal.

    Anyhow they want to give me taxotere and cytoxan. I heard that taxotere can result in permanent hair loss - not temporary but permanent and there are lawsuits out there. Any one know anything more about this? I am thinking of having them switch the taxotere to Taxol or something. I am 60 but cant seem to get over perhaps losing my hair permanently. Temporary hair loss - sure. My oncologist also has cold caps at their clinic - $400 a treatment. I thought she said 1 hour before and 1 hour after but maybe I heard that wrong. I havent had my education session yet.

    Thank you!

  • minustwo
    minustwo Member Posts: 12,989
    edited October 2020

    marie - sure there are incidents of permanent hair loss - and I bet you found them on Google. The majority of women do not suffer permanent hair loss. Maybe it doesnt come back in as thick as it was - but mine came back even thicker. But yes, its possible. As far as I know theres no way to tell who might or might not have permanent hair loss. When I had my chemo, cold caps were in their infancy - and anyway I didnt have that kind of money.

    I had TCHP - Taxotere, Carboplatin, Herceptin & Perjeta. 6 rounds 3 weeks apart. Both Taxotere & Carboplatin can cause hair loss. And yes, I lost my hair. I was 69. But as I said, mine came back even thicker than it was before. And it came back brown - the grey was gone.

    Icing feet, hands or head is recommended AT LEAST 30 minutes before and after, but an hour before & after doesnt sound unreasonable. Theres another thread of tips that Ill bump for you. And there are several threads specifically about cold capping if you check the search area.

  • margo53
    margo53 Member Posts: 131
    edited October 2020

    Hi Marie....

    I also read this about TC before my treatments.... my hair is coming back in very well. I did not cold cap.

    Please reach out if u have Other questions...

  • minustwo
    minustwo Member Posts: 12,989
    edited October 2020

    Marie: As mentioned, heres another really good thread about getting through chemo

    https://community.breastcancer.org/forum/69/topics...

    I will say I worried more about my eye brows than my hair. I knew I could get a wig but I did not want to lose my eye brows. That was my own personal horror. I used "Latisse" on my brows & lashes. I did lose a lot of brow hair, but they never totally went away.

  • marie914
    marie914 Member Posts: 152
    edited October 2020

    thank you Margo and minustw

  • deniseml
    deniseml Member Posts: 66
    edited October 2020

    Thanks for the news. Im currently receiving TCHP. 3 down, 3 to go before surgery. I have lost most of hair, not all yet. My bigger concern is losing eyelashes since not experienced with using false ones. currently having issues with blepharitis ( inflammation of eyelids) have not yet lost all eyelashes.

  • deniseml
    deniseml Member Posts: 66
    edited October 2020

    Greenfairy6,

    I started getting some after 2 treatments, along with the very sensitive scalp ! I shaved my head because of the sensitivity which did help. Also was able to use moisturizing cream on scalp with success and sores resolved and have not returned. I only moisturize at night so it didnt effect keeping wig in place.

  • July152020
    July152020 Member Posts: 16
    edited October 2020

    what cold mittens and socks you all have now? The one Tiffany recommended no longer available. Should I just bring ice packs? Is neuropathy only on the finger/toe tips?

  • minustwo
    minustwo Member Posts: 12,989
    edited October 2020

    I used frozen peas in zip lock bags. I had two sets so I could start 30 minutes before the 60 minutes Taxotere infusion and continue for 30 minutes after. The infusion center nurses kept the extra bags in their freezer & brought the cold set to me 1/2 way through the two hours.

    And no - neuropathy can encompass all of the feet & travel up your legs. Likewise with the hands. Certainly all the fingers & thumbs.

  • halildindar
    halildindar Member Posts: 3
    edited November 2020

    bump for newbies

  • Gizmo77
    Gizmo77 Member Posts: 1
    edited November 2020

    This is Nelly.

    Tiffany, how are you doing now. (11-30-20)? I hope you are well. I know you are well. You are such a brave young women. I am 66, never felt old, in two days I am suppose to start either TC (for which my dr said it is more harsh) without explaining is this harsh just because of hair, or people feel more sick. Thanks God you had a relatively good experience. My dr offered me CMF longer treatment for which she said it is less harsh and New Yorkers like it better because of "quality of life" whatever that means.

    So mu question for you, if you can please answer me, did you receive the Boost for drop of white blood cells? and if Yes, did it work. Did you get it 4 times every time you got treatment.

    Second question, how dr know if the chemo worked, after we had it?

    Thank you very much.

    Nelly

  • marie914
    marie914 Member Posts: 152
    edited November 2020

    Hello Nelly - I havent heard of CMF but I just finished my second of four cycles of TC. You will lose your hair but besides that it hasnt been too bad. Some stomach upsets and I did have bone pain after the first cycle from the Neulasta (that boosts the white blood cells). I did get it both times and I will get it the next two times too. I was told to take Claritin before and a few days after the infusions and the Neulasta and it seemed to help this cycle.

    I am not sure how they know the chemo worked or not unless you have a tumor that they are shrinking. Then they can take tests to see if it shrunk. I had already had a mastectomy before they told me I needed chemo since my scores from Mammaprint (some people have had Oncotype) were on the high risk end. So I am not sure how they will tell if it worked on me or not.

    Good luck to you.

  • minustwo
    minustwo Member Posts: 12,989
    edited December 2020

    Gizmo - Tiffany hasnt been on BCO since 2018. I would suggest you find the current chemo threads and post there - such as chemo starting Nov 2020, or even the month before. Its useful to follow along with a group thats all in the same place. Good luck

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900
    edited December 2020

    Gizmo77 - is Cold Capping an option? Some facilities might even have FDA device so you do not have to DYI. Check the cold capping thread. I even changed clinics: 1) I did not feel very comfortable with the oncologist 2) My request for DYI cold capping caused quite a stir and the board of directors met to discuss my request and decided no. At the other clinic. they had no experience with it they would not be able to help me, but both the oncologist and surgeon were very interested. My success was marginal, but both the oncologist and surgeon were very impressed with the results. If you look on the thread for cold capping, some people have excellent results.

  • marie914
    marie914 Member Posts: 152
    edited December 2020

    Yes BlueGirlRed - my closest clinic didnt offer the DigniCap but a clinic about 15 minutes farther did and it was the same system just different locations. They do most of the work for me. I dont think I would have done it if I had to do the work. :) My oncologist who serves both locations told me about the DigniCap befoe I could ask about cold capping. All the medical people I talk to here are interested to see how it works. I have lost quite a bit of hair but I can still wear a ponytail and comb it differently. I lost most on the top of my forehead so I usually choose to wear a ball cap when I am out. Around the house I just let it go.

  • CDub
    CDub Member Posts: 7
    edited March 2021

    Dear Tiffany,

    I really appreciate this list. I am 52 and a T1b tumor removed from my left breast that was only 6mm but because it was triple negative and Im BRCA+, doctors are recommending 4 rounds of TC chemo. I plan to do cold capping and will look into the link for financial help since insurance wont cover it. Whats the link to your cold capping tips?

    I do have one question: Im pretty athletic, a swimmer (~1-2 miles twice a week) and a cyclist (30-80 miles/week). Do you think I will feel good enough between cycles to swim and bike? You said except for the "bad days", you did your normal exercise....did you actually feel good enough to do "normal" exercise or were you still fatigued enough that you had to cut down some? How "normal" are the normal days?

    Thanks so much again for your help!


  • minustwo
    minustwo Member Posts: 12,989
    edited March 2021

    CDub - Tiffany hasnt been on BCO since 2019 0 but Im sure youll get other answers. You should for sure exercise, Its extremely helpful. But you may have to cut back a bit. I found my balance was kind of wonky towards the end of the infusions so youll have to see about the bike. I had chemo on Thursdays.. Felt great Fridays thanks to the steroids. Slept most of Saturday & came back to life on Sunday to start the week again. I had two sets of different chemo drugs - started when I was 69. It isnt fun,but you can so this.

    I suggest you join a current chemo group - like Chemo February 21 or Spring 21. It really helps to bounce things off people going through the same problems. Also I went back & read the entire thread for the group before.

  • minustwo
    minustwo Member Posts: 12,989
    edited March 2021
  • sarah_78
    sarah_78 Member Posts: 119
    edited September 2021

    What a gem, thanks so much to Tiffany for putting this together, it is definitely the most complete list i have seen to date.

    While I was going through Chemo for Hodgkins, i did some of these, drinking water was so essential as well as exercising and mouth wash.

    1 thing Id like to add is that, if you have some mild reflux, it might get worse during chemo. My mouth and throat irritation and wounds went away when I started taking reflux medication daily.

    Ill now go search for icing gloves and socks as well as head wear. Anyone in Germany who can recommend me a brand, which is available here?