Very nervous about TC

tanyam
tanyam Member Posts: 10
edited August 2016 in Chemotherapy - Before, During, and After

Hi All, now that I have researched up on TC, I am very apprehensive about this course of chemo based on the fact that hair loss may be permanent. Is there anyone that approached their onc about their specific chemo drugs and requested to change them?

· Share on FacebookShare on Twitter

Comments

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited August 2016

    No, I really didn't worry about it. My chemo experience wasn't pleasant, but it wasn't unbearable. I did lose most of my hair, but it came back in. The hair on my legs and under my arms is very light now--I only have to shave about once a month now, so that's a big improvement. But my head hair is thick and curly, a big difference from my thin straight hair previously. The only issue that I have had is some peripheral neuropathy, probably caused by the Taxotere. I saw a neurologist who says he believes it will eventually improve, but he can't guarantee that it will go away. It's not awful and if it doesn't worsen, I can live with it.

    I think every chemo has its own issues. Talk with your doctor about your concerns and see if he/she feels strongly about TC or if he things another drug cocktail would be just as good.

    · Share on FacebookShare on Twitter
  • Hopefloatsinyyc
    Hopefloatsinyyc Member Posts: 211
    edited August 2016

    i did. I had a well received, open dialogue with my MO about my regime options. He appreciated the fact I was educated in my approach, and wasn't refusing treatments, but wanted to have a good understanding of why a protocol would be selected, and be assured that he understood and respected my areas of concern. After a 4 hour first appointment (including time with the nurse clinician and pharmacist) we came up with a plan where I could be 100% on board, and my MO did not feel efficacy was deminished. I am not using any steroids in my plan, and eliminated taxanes as well. Because of my concerns about AC's impact on ones veins and heart, I am being monitored by an cardiologist to spot any changes immediately, and had a power port implanted.

    I am thankful for this site as it prepared me with knowledge and confidence to have a really great conversation with my medical team. My MO actually thanked me at the end for the great dialog and now I am confidently moving forward!

    · Share on FacebookShare on Twitter
  • mydogspot
    mydogspot Member Posts: 25
    edited August 2016

    I will be starting T/C on Friday and I tried to talk my oncologist into taxol instead. She insisted on taxotere so I am trying to be resigned to maybe permanent hair loss. Last week I was horrified by the thought but now I just want to get it over with. They also don't want me to use cold caps or ice my hands or feet because they think it defeats the purpose so I will probably be losing fingernails and toenails. Cancer is not a battle it's an endurance marathon. Three months and this will be over.

    · Share on FacebookShare on Twitter
  • ladyboss1997
    ladyboss1997 Member Posts: 202
    edited August 2016

    You GOT this!

    That was the exact same chemo cocktail I did starting 7/11/11. Here are some good things to do:

    take the nausea pill reguarly for the first 24-48 hours after chemo. Don't wait to get nauseous. The first 24 hours worked for me. I never got sick.

    drink 10 - 8 oz glasses of water each day for at least 7 days after chemo. I started doing it every day, and still do

    if prone to constipation, drink one glass of metamucil or similar fiber drink each day for 7 days after chemo

    for 72 hours after chemo - rest. Let your body do what it needs to do. Sleep when you want to sleep. Be awake when you want to be awake.

    take short walks every day or do some type of light exercise daily

    eat/drink high protein foods. My favorite go-to was muscle milk, scrambled eggs, and peanut butter sandwiches

    the tast buds going wacky was the worst side effect for me. The only thing that tasted good was sweets, and you have to be careful with those. I kept a bag of low calorie mints with me at all times. And I drank flavored water because regular water was yuk.

    keep Benadryl and itch cream on hand in case you get hives. I only got them once.

    use Nail Tek daily on finger and toe nails

    Take Biotin and a probiotic daily

    get a night cap for your bald head, if you tend to get cold easy.

    Get a nice wig before you lose your hair. It will make you feel prepared. I bought my wig to match my hair color and style almost exactly. No one whould have known I had lost my hair if I did not tell them.

    I cut my hair very short before I began chemo, then shaved it when it started coming out in droves. You can expect to lose your hair 10-14 days after the first chemo. It might help to have your favorite hardresser on standby to do the shaving. Throw your hair a goodbye party.

    When I finished chemo I began using Ovation Hair Advanced Cell Treatment on my head. My hair has come back prettier and thicker than ever. I still use it now.

    hook up with a group on this board who is going through chemo at the same time, with the same chemo cocktail. You will learn from each other as you go throught he process.


    · Share on FacebookShare on Twitter
  • octogirl
    octogirl Member Posts: 2,804
    edited August 2016

    for mydogspot: I don't think most TC patients lose their nails, though a few do and others have problems short of losing them, so I wouldn't assume you will lose them if you don't ice. OTOH, if you really want to cold cap and your doc says it defeats the purpose, it might be worth getting a second opinion. My MO wasn't enthusiastic about cold capping because he didn't think it worked all that well, but I went with him anyway because the closest MO who did support cold capping was quite a drive away (I live in a rural area) and otherwise he's been a good choice for me. To be honest, I tend to be a minimalist about taking care of myself and I did worry I'd find the icing and cold capping to be too much trouble in any case.....

    for tanyam, I agree that discussing your concerns is a good idea. Your MO may suggest alternatives, but at the least they should hear and address your concerns.

    Losing one's hair is no small thing. For me, it was the worst part of chemo. My hair is back now (a lot curlier, and in my case, somewhat thinner), but it was still tough. The hardest part was the waiting AFTER chemo for it to grow back: that seemed to take forever!! I do regret not buying a wig. I thought I would hate wearing one, and maybe I would have. However, not wearing one (I used hats and scarves) meant that all my co-workers figured out what was going on, and I would have preferred to keep it more private from some of them.

    The best advice I ever got during chemo was actually from my MO, who told me he wanted me to live as normal a life as possible including exercising. I walked a lot and was in better shape than I am right now, and it helped a lot. Also, there are threads on this board about exercise during chemo, which helped me, and threads for those going through chemo. I recommend joining one or both for support, it does help!

    Sending hugs.

    Octogirl

    · Share on FacebookShare on Twitter
  • tanyam
    tanyam Member Posts: 10
    edited August 2016

    MY MOM WAS DIAGNOSED WITH PSEUDOMYXOMA PERITONEI IN 2014. ITS A VERY RARE CANCER OF THE APPENDIX AND THE ONLY TREATMENT AVAILABLE WAS A BIG SURGERY TO REMOVE ORGANS AND HIPEC. SHE JUST RECENTLY PASSED AWAY IN APRIL. SHORTLY AFTER I FOUND A LUMP AND HERE I AM WITH BREAST CANCER AT AGE 40. LAST YEAR MY BROTHER WAS DIAGNOSED WITH ORAL CANCER. SO THE LAST TWO YEARS HAVE BEEN SUPER HARD AND I AM A SINGLE PARENT. THE TIME WHEN I WOULD NEED MY MOM WOULD BE NOW AND I DONT HAVE HER AND STILL DEALING WITH THE GRIEF OF LOSING HER OVER 3 MONTHS AGO.

    I AM SO THANKFUL TO COME ACROSS THIS WEBSITE, IT HAS HELPED WITH A LOT OF THINGS I DIDNT KNOW, OR THINGS I NEEDED TO ASK.

    I AM ARMED WITH A LOT OF QUESTIONS FOR MY DR TOMORROW AND HOPING SHE CAN OFFER ANOTHER CHEMO REGIMEN.

    THANK YOU ALL FOR YOUR INPUT.

    · Share on FacebookShare on Twitter
  • VLH
    VLH Member Posts: 1,258
    edited August 2016

    Tanyam, if you're comfortable sharing, what kind of cancer do you have? Either Taxotere or Taxol, both taxane drugs, are typically included for many kinds of cancer. Since I'm diabetic & have severe Fibromyalgia with fine motor skill issues, I'm dreading Taxol. The alternative for triple negative is TC so either treatment plan involves a taxane.

    · Share on FacebookShare on Twitter
  • CrawfordsMommy
    CrawfordsMommy Member Posts: 68
    edited August 2016

    Hm. I'm on day 34 of TC, and while my hair is patchy, I haven't lost it all. In fact, the patches that I do have are still growing. I keep having to shave them back or my head looks mangy. It's strange!

    Most people who take TC don't permanently lose their hair. A small percentage do. I was aware of this and still chose this regimen for my treatment. Sure, I'm taking a chance with my hair, but whatever happens in the future, I'll deal with it.

    I love my wigs... I have 3. One provided by insurance, one donated, and a cheap purple one that I mail-ordered from a costume supply store because I'm a big dork and I wanted a silly purple big-hair wig because I have a silly sense of humor. I just might wear the silly purple wig to chemo sometime! Remember, Dolly Parton always wears wigs...

    My oncologist does not allow cold capping or icing. Fortunately, my nails are hanging in there so far, and I don't feel any neuropathy yet. I'm taking hella supplements to try and prevent it, too.

    I have two more treatments to go, so I guess I'll just have to see what happens!

    Nausea varies from person to person. Sadly, I've had it pretty bad in that respect. And the Taxotere's been especially rough on my blood counts. I'm sleeping a lot and feel very weak in spite of careful physical therapy to try and maintain some fitness. It could be because I'm not eating a lot from the nausea. Right now I'm more worried about my bone marrow than I am about my hair.

    · Share on FacebookShare on Twitter
  • Denise-G
    Denise-G Member Posts: 1,777
    edited August 2016

    Tanyam - I am so sorry for all you have been through and all you are facing. I'm sure your Onc will recommend genetic testing based on family history. As someone who has a long family history of cancer, not breast, I found out I have a genetic mutation called Chek 2.

    Sending my best - you can get through this!

    · Share on FacebookShare on Twitter
  • Seashells9701
    Seashells9701 Member Posts: 1
    edited August 2016

    thank you for your posts.

    I may be changing chemo drugs due to possible metastisis. I was taking adriamyocin and cytoxene (spelling). I have had 2 rounds of these drugs. I have a PET scan coming up to see if the spot on the center of my chest is cancerous. If it is then the new cocktail will be gemzar and taxol with neupogen for 2 rounds. Has anyone had any or all of these drugs before? How did you respond?

    To be honest, I am really scared after having read all of the side effects.


    · Share on FacebookShare on Twitter

Categories