Breast Cancer Now Forum

Nurse_BCN · ‎07-11-2022

Hello Angela Thanks for posting. It’s understandable that you want to know more about the percentage benefit from taking an aromatase inhibitor in your situation, so you can weigh this up against the side effects, such as hair thinning that you’re experiencing. As you can see from Milly 15’s post that you responded too, many women who experience hair thinning find it devastating, especially as you say, you need to take it for a further 6.5 years. As @Kay0987 says, it’s worth talking to your treatment team about your hair thinning to see if they can suggest anything that may help. You may also find the organisation Cancer Hair Care of help, they are a specialised organisation that offer support and advice for people who experience hair loss from cancer treatment. And as K0987 also says, some women find using a different brand, or a different aromatase inhibitor drug can suit someone better and sometimes reduce some of the side effects they experience. You may find it helpful to see what other people have tried by also posting in the hormone therapy section of the Forum. Your treatment team are the best people to talk to you about what your individual percentage benefit from endocrine treatment is. They may use a tool called Predict, to help explain your individual benefit at 5 and 10 years. You can ask how the percentage benefit is likely to differ if you were to change back to tamoxifen. It might also help to talk to your breast care nurse about this. Do call our Helpline if you would like to talk this through or have any further questions. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK -prefix 18001). If you would like a nurse to call you do complete this form. Ticking the box agreeing to a call back. Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open. We are closed on Saturday the 19th of November for staff training. Best wishes Teresa Breast Care Nurse Please read the Ask Our Nurses disclaimer Full details on how we collect and use your data can be found in our Privacy Policy This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread.

Nurse_BCN · ‎07-11-2022

Hello Milly15 Thanks for posting Hair loss can be one of the most distressing side effects of cancer treatment and it looks as though you and @angelblue are experiencing similar problems with hormone therapy. Hair loss as a result of hormone therapy often goes under reported. This can be particularly distressing as treatment is usually recommend for five, sometimes 10 years. When hormone therapy finishes, hair will usually start growing back. This may take some time and for some may not fully return to the same thickness. Some women prefer to use gentler shampoos, conditioners, and hair products to minimise the risk of hair breaking. You may find it helpful to see what other women have tried by also posting the hormone section of the Forum. We have a range of other services that can help support someone who is going through treatment. Each person will find their own way of dealing with hair loss, but it can be helpful to talk to others who have been through the same experience. There are number of organisations, such as Cancer Hair Care, My new hair and Look Good Feel Better who offer specific support to women experiencing hair loss from cancer treatment. Your breast care nurse or treatment team may also be able to signpost you to local hair loss services in your area. In some areas, a hair loss service is provided by the hospital. You explain you are not sure if you would want a wig but if so couldn’t afford one. Some people are entitled to a free wig on the NHS. You can read more here. Do call our Helpline if you would like to talk this through or have any further questions. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK -prefix 18001). If you would like a nurse to call you do complete this form. Ticking the box agreeing to a call back. Our opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open. We are closed on Saturday the 19th of November for staff training. Best wishes Jane Breast Care Nurse Please read the Ask Our Nurses disclaimer Full details on how we collect and use your data can be found in our Privacy Policy This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread.

angelblue · ‎05-11-2022

Hi there thanks for getting back to me. Yes I’ve been looking at things like this and I’ll give them a try. I’m also looking at a treatment called PRP… it’s a ‘vampire’ facelift for your hair!!!! It’s supposed to stimulate new growth. I have a consultation this week. It does seem to have good results and there’s a current study taking place in Australia on how well prp works on women taking letrazole. So I’ll see how I get on 🤞🤞

Kali · ‎17-03-2021

Hi, Did you find out who the holistic therapist was and what the ointment was that restores normal sensations to her fingers. I am at the desperate point of feeling I may have to stop the targeted therapies because of the worsening neuropathy and any possible ways to manage and reduce the neuropathy and prevent deterioration I am willing to try. Thanks Kali

marryblackburn · ‎11-01-2021

Hi Dikat, Here is my favourite Shampoo for Color Treated Hair that you can try. I am using it for a long time.

Shi · ‎22-09-2020

Buddyfan and jencat, don’t know what’s happened to oct17 chemo thread it’s not bringing most recent up anymore 🙄 just want to send ❤️ And let you know I’m thinking of you and hope all going well 😘💕💕✨✨Shi xx

Aneeebel · ‎26-09-2019

Hi Ladies Hope you're all well! After 11+1/2 very traumatic months "off sick"..., i went back to work on Monday on a phased return... Who knew you could be so tired from doing a couple of hours work!!! 💤💤💤💤💤💤💤💤 To anyone who can juggle work, chemo, surgery and rads and all that goes with it... You are my heroes!!!! 💪🏻🎀💗 I must be getting soft in my old age!!! 🌸

angelblue · ‎04-03-2019

Hi both Thanks for your replies. It went ahead and all ok other than usual heavy fatigue. I'm having 10 filgrastim injections this time so hopefully that should help. Gaby you were really brave injecting yourself. I intially had district nurse but now a friend is doing it for me! Hope you are both doing well xx

angelblue · ‎26-02-2019

Hi gemsy. I've sent you a pm xx

angelblue · ‎20-02-2019

Hi Trixie Sorry for late reply. I've not been on the forum for a little while. Been down in the dumps and fretting about things. But starting to feel better now. I didn't go ahead with the cold cap. My hair lasted until just before chemo 3. Its been shaved for almost 3 weeks now but I have a fair covering slowly growing through. I'm guessing this may still go with remaining 3 chemos. Chemo-wise I'm on 6 x FEC. Other than slight nausea at the beginning, constipation for first few days (made better by Laxidol) and fatigue I'm doing ok. My neutrophils keep being too low though and keep having chemo postponed by a week. Started Filgrastrim injections after chemo 2. They did raise neutrophils slightly but not enough to stop chemo being postponed. Side effects wise I seem to have done ok with those as well. Had some back ache and palpitations with first lot. What chemo are you on and hows it going? xx

Julie S · ‎19-02-2019

Thanks for the useful advice. I've got an appointment today to choose mine. Looking forward to it, strangely.

angelblue · ‎26-01-2019

Hi. I was in a very similar situation timewise. I had surgery (mastectomy and tissue expander) and at my follow up appointment 3 weeks later the plan was just radiotherapy followed by tamoxifen (they said I was low risk of recurrence and had no node involvement but I was concerned as I had 4 tumours even though the largest was only 10mm). Then there was an additional 2 week wait when oncology somehow didn't realise I'd had my follow up appointment with the surgeon - they only knew once I phoned them to find out about delay! When I saw oncologist I actually insisted on the oncotype test which added another 4 week wait whilst sample was sent off to Onccotype labs in USA. Then when I went back for results I was completely shocked as Oncotype had changed my risk of recurrence from low to high (my score was 31). So at that point chemo was recommended. By the time chemo started I was at 11 weeks post surgery. I really panicked as I read a lot of information and ideally chemo should start as soon as possible after surgery. But it is still proven to be effective within 12 weeks. I do understand how you feel. When starting chemo I felt that I was going to go through this horrible treatment but the effect of it wouldn't be as good as if I'd started sooner. But I've had lots of reasurrances that within 12 weeks is fine and as some women have infections following their surgery they do start later than that. I've had 2 chemos so far. My second was delayed by a week due to low blood count. I then had 5 x filgrastim injections to boost blood count but my third chemo is now postponed (should have been this monday) due to still having low white blood count!! Again this got me fretting but it does happen alot that chemo gets delayed by a week. The good thing is that Oncotype is one of the most advanced tests for recurrence and there is a chance that it'll come back low and you won't need chemo xxx

Jill1998 · ‎26-12-2018

That's good to hear .Good luck with the rest of your chemo .

reddi · ‎10-12-2018

Apologies, everyone -- I just realized I posted much the same earlier in this very thread!

angelblue · ‎10-11-2018

Thanks Ann I agree it is the fear of the unknown which makes it worse. Regarding the different brands it seems that some women do ok and some do terribly whatever brand they're on. Then there are others who's side effects improve/change/worsen on different brands. Its an addition stress when you're already coming to terms with so much! And I do agree that understandably, as you say, more women post when they are having problems so you do get a more negative view by reading past posts. I think I've been trawling the tamoxifen posts just to see if there's one brand that stands out as having less side effects (especially hair thinning). Wockhardt and Teva generally seem better, although some women have terrible experiences on those. Then Relonchem tends to have more bad reactions, but then some women do better on that...what a mindfield it is! I think I might take back my Relonchem and see if I can change it for Wockhardt or Teva for my first experience of taking tamoxifen and then go from there. I really hope that in a years time I'll be back on here reasurring other women who are worried abut starting tamoxifen! Thanks again Ann, I hope you are doing well xx

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