Looking for tips from anyone who's taking Docetaxel and Carboplatin and Herceptin

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Hi,

I've had a mastectomy and reconstruction and now about to start 6 cycles of Docetaxel and Carboplatin and 12 months of Herceptin. I've read quite a bit generally about the treatment but wonder if anyone managed to keep any of their hair/eyebrows etc. I don't start until 18th of August and was thinking of getting eyebrows microbladed and wig in advance. I've not yet gone through menopause and understand this will likely push me into menopause and I've read that sometimes the hair loss is permanentl. This is a real worry for me and wonder if anyone has any positive tips relating to hair loss/regrowth or how to deal with the side effects in general with this specific cocktail. I'm hoping to mostly be able WFH and appreciate I may need some time off. Anyone else manage to work? Sorry for all the questions, I'm just worried about all the horrid things I've read so far.  Also, should I buy cooling gloves and slippers? I love to walk and jog and don't want too much numbness in my feet if I can do anything to help. Thanks in advance xx

  • Hi Moomin48

    Am sorry to hear that you have had surgery for breast cancer and are now about to start chemotherapy.

    I had chemotherapy last year for Womb cancer. I did not have Herceptin. I had paclitaxel (which is another taxane, like Docetaxel) and carboplatin. 

    I used the cooling cap throughout and kept enough hair on my head that I did not need to use a wig or scarves. (I did have them both on standby though) It is a personal choice whether to use scalp cooling but I am glad I did. I would have lost all my hair otherwise. With the cooling cap there is still some shedding and after chemo finished my hair had thinned all over but I had no bald patches. 

    Shedding started about 2 weeks after my first cycle of chemo. I lost all body hair before my second cycle of chemo so I know that without the scalp cooling I would have lost the hair on my head as well. Eye brows and eye lashes both went early on. Then came back and then I lost them again a couple of weeks after chemo finished.

    I chose to scalp cool because I didn't want to look ill and one of the things I worried about most was losing my hair. I also believe that it protected my hair follicles and I found my hair was actually starting to grow back during my chemo treatment. It certainly came back quickly and thicker than I had expected. It does not work for everyone but most people that I saw on my chemo days were having some success with it. I was also concerned about permanent hair loss because on some regimes there is a small possibility. My consultant said it was rare but still a small chance so they have to warn you.

    Preparing for hair loss by getting a wig in advance is a good idea. There was a lady who came to my hospital with a hairdresser once a week and she preferred to see people while they still had hair to get an idea about what their hair normally looked like. I was given an NHS voucher for the wig. 

    Getting your eyebrows done before chemo is up to you. My hair is fair so I could just use an eyebrow pencil. I didn't do anything about my eye lashes as when your hair comes out it can make them feel irritated. 

    I would suggest you talk to your CNS/oncologist about cooling gloves and slippers. It is not something that I came across on my chemo days but since finishing chemo I did hear about them. I am not sure how effective they are on the routine you have. I have got some neuropathy from my chemo and the important thing is to report any symptoms of it straight away (numbness/tingling/pain) then they can look at your doses and if necessary adjust them to prevent any progression. This is what they did for me. 

    Considering working from home is a good idea but until you have the treatments you are not sure of how they will affect you. I was told not to work  during chemotherapy and looking back this was the right decision for me. The side effects were too severe for me but this does vary from person to person and regime to regime. I would advise going with the flow and just keep an open mind. I found that with each cycle the side effects accumulated and by my last cycle I was very weak and fatigued and was unable to do a lot. They normally give you a diary to keep a record of any symptoms and this is a good idea to fill in as there may be a similar pattern in each cycle with side effects. A lot of the side effects can be helped with medication. To give you an idea I was on a 3 weekly cycle. The first two weeks were tough and then I started to pick up a bit by the 3rd week. In the 3rd week I was able to go for a short walk and potter around in the garden. I could walk to the local shops 5 minutes from me. However due to the infection risk by the last cycle I was advised to stay home more and avoid mixing too much.

    Re the menopause- I believe that some chemotherapies can cause this, either during treatment or permanently. It is not something that affected me from the chemo as I had already had a total hysterectomy. Your CNS would be a good person to ask about this perhaps. 

    I hope this helps a bit. Chemo is not easy but I found it doable with plenty of support. I also learnt to listen to my body and rested as much as I could and was careful not to overdo it. They will give you a 24 hour phone number that you are able to call if needed for any support and worries. I did this several times. They will monitor you regularly during the treatment with phone appointments and blood tests etc so I am sure you will be well looked after. I found that the thought of chemo and the worrying about it before hand was worse than my actual experience. I had some lovely nurses looking after me and the chemo ward was a calm and friendly place.

    Good Luck with your treatment and if there is anything else that we can do to support you please just ask.

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thank you, Jane that's so kind of you to reply and that's all really helpful. I'm going to give the cold cap a good go as nothing to lose by not trying it. 

    I think your advice about taking easy and seeing how it goes is sensible. My oncologist said she thought it unlikely I'd be able to work fully and that the first week or so after the chemo is the worst. Mine is also once every three weeks. Making a note of symptoms etc is a good idea and I'll be sure to do this. For me, looking ill makes me feel worse and so if I can do little things to feel more normal then it's worth it for me! Thanks again for replying. Hugs, Lynda.

  • Hi Lynda

    With the cooling cap it does make the chemo day a bit longer but in practice that is not as long as expected. In my experience the cap needs to go on 30 mins before the chemo infusion starts but in reality that was the time when I was having the pre meds etc so I would have been there anyway. I had to have bloods taken first thing and they used to put the cap on and set it up while waiting for the results. At the end of the day it does depend on the regime but I had to keep it on for 90 minutes. During this time I was with the nurses and they were talking through side effects etc, explaining medication and would make me a cuppa and it was good to just sit and rest and chat with them. 

    I was told it was a good idea to take paracetamol about an hour before and I did this. You need to tell them on the day so they are aware. When the cap first goes on it can feel uncomfortable and the paracetamol takes the edge of it. Its the tightness and cold but I found after around 15-20 mins you sort of go nicely numb and do not seem to notice it. I did a bit of deep breathing and chatted with the nurses to distract myself. I certainly did not find it unbearable and if you find it is too much you can ask them to stop and the machine can be turned off immediately. 

    Hair care is important during scalp cooling and they will likely give you a copy of the Paxman booklet. But its a case of being gentle and still expect some shedding. Shedding does not mean it is not working and for me it helped to focus on what I kept rather than what I lost. With each cycle my hair got a bit thinner but I lost most in the first cycle. If you do lose a bit more then they can use a theatre cap to help protect your scalp from the coldness. 

    There is a thread on here that you might want to look at. I will post a link. I put some more details on it a while back that may help. I would do it again if needed and I found it helped me through my treatments.

    (+) Hair Loss and Hair Loss treatments - Macmillan Online Community

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi. In terms of work my oncologist actually encouraged me to work on condition it was work from home to lower infection risk etc. And my work have been super supportive. I managed to work a maximum of 60 percent of my hours while having chemo but work very much put me in charge to show them what's possible and when I felt rough I called in sick 

  • Hi, thanks for responding, that's useful to know. Having a rubbish week as work not keen on my working through if I might need time off each month. Think they'd rather me be off and unpaid! Also, I triedBlush to get info/wig referral and possibly pop in to see my local cancer unit. Got told quite ubruptly they are too busy and it'll all just get sorted when I turn up for my first treatment. Feeling a bit poo Blushabout it all. Luckily all you lovely ladies are kind enough to answer questions! I'm pleased you have had a supportive experience with work Blush

  • Why not speak to Macmillan as they may have a wig service in your area or Maggie's? I'm fortunate I get six months minimum full pay for sickness and I have great managers. 

  • That's a good idea. I might give them a call just to chat things over. That's really good on the work front. I had 4 weeks to cover surgery and have insurance that will kick in at 13 weeks off, so will probably just take the hit for a bit until then. They have been very nice but it's a small firm. Thanks for the good advice.