Confused!

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My oncologist is allowing me to choose which chemo I want. I had a mugga scan and my infraction was at 56% this scared me away from AC. He then showed me TCH I was fine with this until I read it cause permanent hair loss. I was just wondering if I could get some advice. I start chemo in 12 days :/ I was stage two Er pr pos hers2 pos clear nodes...please help I'm so scared!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2013

    angie - 56% is a perfectly normal ejection fraction result.  Ask your doc to tell you what percentage of Adriamycin patients he has that have had heart damage, and then ask what percentage of Taxotere patients he has seen have permanent hair loss.  This may give you better info with which to make a decision, instead of a nebulous worry with no specific numbers.  While I would not want to be in either of those groups, prior to receiving TCH I did ask my MO how often had he seen permanent hair loss - he said once in 15 years.  I have read that the stat is up to 6% but I don't know what constitutes "hair loss" and that is an important distinction.  Hormonal therapy also causes "hair loss" which is expressed as thinning, but does not affect all who take it.  FWIW, my MO will prescribe Adriamycin to his breast cancer patients, but not if they will be receiving Herceptin.  He uses TCH in those cases, and this is also the recommendation of Dr. Dennis Slamon, the doc who brought Herceptin to the market.  The rationale is that with both drugs being cardio-toxic, and Adriamycin's damage being potentially permanent, TCH is the more pragmatic regimen.

  • angie231775
    angie231775 Member Posts: 13
    edited November 2013


    I was worried about the AC and hercepatin causing heart damage. It is why I asked him about the tch. He did tell me he monitors his patients on AC after every treatment. The hairloss is a low percent but I don't want to be in that percent and regret my decision :/ I need to talk to him some more I guess. My nurse said in all her years she has never seen permanant hairloss so I guess that's good ....

  • belleeast
    belleeast Member Posts: 653
    edited November 2013


    I had 4 A/C and 2 taxol,2 taxotere because I had a reaction to my 2nd taxol. Although,I now think I had the reaction because they infused it too quickly in 11/2 hrs. Anyway, I am one of the 6 per cent in that I went from having thick hair to thin-you can see my scalp! I can tell you it sucks but you may not have that reaction. I sometimes wonder if the infusion rate caused that,too! It will be 2 yrs this Jan since my last chemo,I started taking pre-natal vitamins,I hope it helps!

  • bdavis
    bdavis Member Posts: 6,201
    edited November 2013


    I was also concerned about heart damage and also hair loss... At the first mention of chemo, I expressed to my MO about my concern for heart damage, he suggested TC (didn't need H), which he thought was the best course for me anyway. After reading, I was very concerned about hair loss. The 6% is not 6% never getting hair back, but insufficient growth. Some say 3%, others say 6%. My MO said he has had 2 patients have insufficient growth, but they aren't bald. So I considered Taxol, which he was fine with. Taxol has a high rate of neuropathy. So I asked myself in a worst case scenario, would I rather be bald or crippled for life. I chose bald. So I went with Taxotere. For you it might be: would you rather be bald or have heart damage? Neither are likily, but which could you live with better. I am guessing being bald.


    In the end, all my hair came back, full and thick.

  • angie231775
    angie231775 Member Posts: 13
    edited November 2013


    Thank you so much! I agree bald is better than heart damage or crippled! This cancer has my mind a mess! I feel like I'm going to regret every decision I make. I feel like it's always something to worry about my skin came close to dying after my masectomy/implants, blood clots in my arm from my port and now worrying about chemo!. I'm not very good at handling health issues. You are right I need to go with taxotere!

  • angie231775
    angie231775 Member Posts: 13
    edited November 2013


    belleeast,


    I've have been researching what I can do if something like this happens to me and I found Virtuesse hair replacement system. It's hair bonded to your head and looks 100% natural. Not sure of the coat tho. From your picture it looks like you have a cute bob! I can't blow it up to see it up close but looks cute. Do they have any clue why this hairloss or thinning happens?

  • jc254
    jc254 Member Posts: 439
    edited November 2013

    Angie, just want to make sure you're aware of using cold caps as an option to prevent hair loss during chemo. It's not foolproof and can be pricey, but most women who receive TC chemotherapy have very good results. I finished 4 rounds of TC in June 2013 with a full head of hair. If interested, search for the "cold cap users past and present" thread to find out more about it.

  • bdavis
    bdavis Member Posts: 6,201
    edited November 2013


    And Angie... remember, these are worst case scenarios. If you read about someone who has insufficient growth, like belleeast above, you are reading it because they have a concern and are here. Those without issues aren't posting. I received a call from a woman who had insufficient growth on Taxotere, and my heart went out to her. She had tried everything. I sometimes think after reading about those with issues, many times these women are on their second course of drugs, and Taxotere was used after another chemo treatment. I think the body and hair follicles can only take so much.


    I do suggest some preventive measures you can take to abate other SE. I put frozen peas on all my nails during Taxotere infusion to prevent nail loss and damage. I also used Brian Joseph lash and brow gel, for the whole duration of chemo plus 2 months. Never completely lost my lashes. Do some research and you can avoid other issues. And to let you know, I had 6tx of Taxotere, and my hair started to grow back between the 3rd and 4th tx while on vacation in St John. I was wearing a bandana most of the time, getting sun and swimming in the ocean. Who knows, maybe my hair follicles liked it!

  • angie231775
    angie231775 Member Posts: 13
    edited November 2013


    Thank you guys so much!! Cancer has made me an extreme basket case! Bdavis I could really use your help on what I need to get thru chemo! I have no idea what I'm doing or what I'm going to need to do. Maybe it's the unknown that's really freaking me out!! I'll make a list and get whatever you think I'll need! How often did you put frozen peas on your nails?

  • angie231775
    angie231775 Member Posts: 13
    edited November 2013


    I have looked into cold caps but from what I read it's very expensive! I lost my job when I was diagnosed with cancer. So I can't afford much :/

  • mfm48
    mfm48 Member Posts: 110
    edited November 2013


    Angie - I just saw this post. For what its worth, have to echo jc254's post. I finished 4 rounds of TC 14 days ago. I have a full head of hair from using the cold caps. The chemo side effects are becoming a distant memory. I cannot believe I've gotten through it all this quickly. I iced my hands and feet during the 60 minutes of Taxotere, and followed the cold caps protocol. I also sucked on popsicles. I haven't had any neuropathy or nail bed changes, or mouth sores. I can't' say chemo is a breeze. But it is manageable. It helps to have time to rest and a good support system. Now, without the added issue of hair loss, I am almost back to my normal self. If you are thinking about it, go to the Cold Caps thread. There is a lot of information there.


    . If you have any questions about the cold caps or the TC chemo, feel free to PM me. Best of luck to you!! You can do it!!






    \

  • Moderators
    Moderators Member Posts: 25,912
    edited November 2013


    angie, as well as the great advice you've received here, the Chemotherapy - Before, During and After forum includes a thread called Important Links for Newbies About Chemotherapy, with info from the main Breastcancer.org site, as well as from the discussion boards.


    • The Mods

  • Kicks
    Kicks Member Posts: 4,131
    edited November 2013

    'Icing' extremeties (hand/feet) may be an option for some but not all.   Taxol caused my temperature to drop drastically.  I had to have one of the glassed in cubicles with it's own thermostat.  I still after 4 yrs have never gotten back to 'normal'.  There is NO one answer for all!  What worked for you workedmfor you and may for some others but is not the answer lfor all.

  • belleeast
    belleeast Member Posts: 653
    edited November 2013


    Angie,thanks for the info,I still have hopes:)) my hair will thicken! My picture is from before BC. It is only recently that my scalp started sweating! I really believe it was the quick infusion that messed my body/hair up. It was only after the chemo that I read that taxol/taxotere takes 3 to 4 hrs to infuse. I count myself lucky I have no heart problems or neuropathy. Just the hair issue.

  • angie231775
    angie231775 Member Posts: 13
    edited November 2013


    Thank you all sooo much! Only the ones who have been thru it know how scary this all is!! I really wanted to do cold caps but seems like an awful lot of money :/

  • bdavis
    bdavis Member Posts: 6,201
    edited November 2013


    Hi Angie... About cold caps, I was considering them, and could afford to do it, but but MO recommended against it. He said that the way it works is that it makes it so the chemo can't cross the blood brain barrier, thus not affecting the hair follicles. But scalp mets is one place you can get a recurrance. And after all, I was doing chemo to avoid that. So I understood his stance and moved on from the cold cap idea.


    As Kicks said, not all things work for everyone, but no harm no fowl in trying. So here is what I did:


    1) Painted my nails with Sally Hansen nail strengthener to keep the nails strong


    2) Put bags of frozen peas on hand and toe nails during Taxotere infusion (about an hour). I would start about 5 minutes before and continue 5 minutes after


    3) Used Brian Joseph brow and lash gel two times a day everyday through chemo and for two months post chemo (order online for $50 a tube - I bought 3 tubes in all)


    4) I drank a tremendous amount of water during infusion - I would bring a small cooler with water/iced tea and my peas. I probably drank 4-5 waters during chemo. Had to pee a lot though. Thankfully I had a port which made it easier to move around.


    5) I used Biotene mouthwash twice daily to avoid mouth sores


    6) I took Claritin daily to help with pain due to Neulasta shot


    7) I took heartburn meds to abate heartburn


    8) I took a B complex vitamin which is supposed to help with neuropathy


    I know everyone is different, and these may not all help you. But they certainly can't hurt you. My MO gave me Zofran for nausea and I never took it - never felt nauseous. I was on the steroids he prescribed the day before, day of and day after chemo... so I felt great those days. It was the third day, the day after the Neulasta shot that I was achey and felt flu-like. But it passed and I was good til the next infusion. For me, the first round was the toughest in the the achey feeling lasted about 3 days. But as I understand it, the first time you take Neulasta your bone marrow expands, thus pushing the inside of your bones out... its not comfy. But once they have expanded you have less pain.


    I worked full time during chemo and took two days off per infusion (chemo day and sick day).... I traveled to St John for 10 days in the middle and felt great. I do think being positive helps a lot. And if one remedy doesn't work, try something else.


    If I think of anything else I will let you know. I did start a thread on here called Taxotere Toolbox. I will look for it.

  • angie231775
    angie231775 Member Posts: 13
    edited November 2013


    Bdavis, thank you so much! I got on the Brian Joseph website last night and ordered! I am on blood thinners I wonder if Claritin is something I can take. I'll have to ask. I agree with you 100% positive attitude is everything! I will definantly be packing a chemo cooler! Thanks sooo much for your help! If you have any other ideas let me know lol!

  • angie231775
    angie231775 Member Posts: 13
    edited November 2013


    I have another question for those that have had a double mastectomy. I can not straighten out my right or raise it above my head at all. I'm not sure if this is from the node removal or the port in my arm but every time I see my plastic surgeon nurse she said it's normal. I don't feel like it's normal. If I try and stretch it feels like a cord is going to snap in my forearm and underarm. I do have a blood clot but would that cause this?

  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2013

    angie - Claritin should not be contraindicated if you are on blood thinners - it is only an antihistamine, but check with your oncologist.  It helps control the swelling that takes place in the bone marrow as it is prompted to produce new white blood cells.  It sounds like you cold benefit from some physical therapy.  You should find a lymphedema certified physical therapist to help you with range of motion and the probably cording under your arm.  It is important to use a LE certified PT so they do not do more harm than good - they fully understand how this type of surgery has impacted lymphatic flow.

  • angie231775
    angie231775 Member Posts: 13
    edited November 2013


    I am going to have to ask them! It's such a pain in the butt having no right arm. It's still pretty swollen and hard. I wanted to feel semi normal before I started chemo...no such luck

  • bdavis
    bdavis Member Posts: 6,201
    edited November 2013


    Angie, I agree with Specialk about PT... I do suspect that the port in your arm is causing the problem. More recently many radiologists have placed the port in the chest not the arm due to ROM. Perhaps a little PT now, and then wait til the port comes out to work even harder at ROM.

  • angie231775
    angie231775 Member Posts: 13
    edited November 2013


    The port is defiantly stopping me from straightening it out. The under arm I think is from something else. But something has to be done for sure.

  • Kicks
    Kicks Member Posts: 4,131
    edited December 2013

    A PT is not who I would suggest to see first - they are not trained in dealing with LE (lymphedema).   CERTIFIED LYMPHEDEMA THERAPIST are trained in lymphedema ('lymphatic flow').  Having had nodes removed, a CLET is the one to go to first - even IF  you have no LE everyone who has had nodes removed should get a baseline to use in the future if LE does develope.  The earlier LE is detected the better chance you have of keeping it under better control and not doing anything to aggravate it.  Only some PTs are CLETs, many claim they 'know all about LE' but have NO education in it so be careful who you see.  OTs (Occupational Therapists) can also be CLETs and for some are a better option than a PT.   My CLET has his Masters in OT and I have never seen a PT for anything related to my UMX as ROM was never a problem even the day after surgery  - we're all different. 

    Not all Drs, PAs, NPs or RNs who deal with BC survivors unfortunately are not well versed in the issues that we, who actually 'live it' daily, experience.  I was/am blessed to have Drs, RNs and my PA (of 17 yrs) who are very knowledgeable, there for me - many, unfortunately,  don't.

    Prayers and thoughts.

    added:  Forgot to add - You might go to the 'Lymphedema' section here for more info.

  • bdavis
    bdavis Member Posts: 6,201
    edited December 2013


    I should add that at my PT, I see the certified lymphatic massage therapist. They are few and far between.

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