Need some advice having had all my lymph nodes removed but only main sentinal nodes were infected with cancer. So upset i still need chemo has anyone tried the cold cap does it work. struggling with lymphodema all ready help…
babs x
O I am very sorry to hear about your lymphodema and that you will need chemo.
I finished chemo back in september and although it had it’s moments, it is do-able. I didn’t have the option of the cold cap as my oncologist doesn’t believe in using them as some believe that the cold cap may stop some of the scalp cells being properly treated and that this could result in scalp metastases. I think if you put “cold cap” into the search engine you might find out more about this from older threads.
Hope I haven’t scared you. Losing your hair can be difficult but it is nice to experiment with wigs in styles and colours you might never have tried before and you can get some fairly reasonable priced ones on ebay.
Hope I have been a help to you and feel free to keep in touch.
Merry Christmas,
Teacup xx
Dear Leolady
Welcome to the forums, I can see that you have received some valuable replies to your concerns over the last day or so, in addition, I am posting with some more ideas of support and information for you which you may find helpful.
You may find our booklet called ‘Breast cancer and chemotherapy’ useful to read prior to your treatment starting, you can access this via the following link:
breastcancercare.org.uk/docs/chemotherapy_07_web_0.pdf
Breast Cancer Care have published a booklet called ‘Living with lymphoedema after breast cancer treatments’ which you may also find helpful, you can read it via the following link:
breastcancercare.org.uk/docs/bcc_lymph06_0.pdf
If you have further queries or concerns about treatments and side effects please do not hesitate to contact our confidential helpline on 0808 800 6000 where you are able to speak to one of our specialist nurses.
Breast Cancer Care can also offer you further support such as our Telephone support groups and Peer support.
The aim of the telephone support group is to give you the opportunity to talk privately and confidentially to other people around the UK with similar experiences. The groups are completely free (we pay for the phone calls) and as long as you have access to a phone and have a quiet private place from which to call, you can join us from anywhere in the UK.
For more information telephone (helpline) 0808 800 6000 or email: <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%74%65%6c%65%70%68%6f%6e%65%73%75%70%70%6f%72%74%67%72%6f%75%70%73%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%74%65%6c%65%70%68%6f%6e%65%73%75%70%70%6f%72%74%67%72%6f%75%70%73%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>
Peer Support puts you in touch with someone who has personal experience of breast cancer or benign breast conditions and has been trained to listen and offer emotional support. We do our best to match you with someone who has experienced the issues that are most important to you, you will find the link below.
breastcancercare.org.uk/content.php?page_id=4438
I hope this is of some help to you.
Best wishes
Lucy
Hi Babs
Sorry your finding you still need chemo - as the others have said it is dooable. I finished mine in November. I did try the cold cap - it was horrible and uncomfortable to wear, I wore it for my first chemo - but my hair started to fall out big time 14 days after that so didnt use it again.
You will get thro this - just make sure you take all your anti sickness meds and drink loads etc. If you search on here, you should find a thread called something like ‘top tips for chemo’ which will give you loads of tips. Also just listen to your body once you have it - take it as it comes, we all react different.
Wishing you all the best
Fiona
x
Hi Babs,
I tried the cold cap for the first two chemo treatments, but unfortunately it didn’t work for me… but I know others that only had thinning of the hair, having used the cold cap. I didn’t find it unbearable to endure and the one I had had to be work for two hours after the chemo drugs were administered. I know that adds a fair chunk to the time you’re at the hospital, but I thought it was worth a try. I didn’t get headaches with it on… yes, it was dashed cold, but I got on with reading a magazine or doing a crossword to take my mind off it. And the nurses gave me a lap-sized electric blanket to keep me cosier…
AliS
Hi Babs
It is horrible when you find out you have to have chemo, i also only had the one sentinel node affected but my onc gave me statistics that showed just how beneficial having chemo would be in preventing any recurrence. I figured it was worth it for the reassurance it would give. I’ve had two and though I would never describe it as my best way to spend time, it isn’t too horrendous either because the worst of the nausea and tiredness passes off and then you get to a stage where everyday you’re feeling more like your old self again. With the hair, I didn’t have the cold cap because I don’t like hospitals and I didn’t want to have to spend the extra 2 hours with the cap, plus it seemed as if it was hit and miss as to whether it worked or not. I shaved my head when the hair started falling out. being bald was preferable to having it come out in clumps everyday. And now I just try to forget about the fact i have no hair. I keep my hair permanently covered with a buff and i don’t spend too much time in the mirror…i just try to keep focusing on the future and how bright it will be once all this treatment is behind me. It is hard to keep upbeat, i have been really down for the past week or so but even the blues pass off too, just like the nausea. Wishing you lots of luck, carrie x
Hi Babs -
well. I guess I got lucky, because the cold cap did work for me. When I was introduced to the Oncology chemo suite, the nurse showed me the cold cap equipment - they had the newest kind, which is connected to a freezer unit unit beside the chemo chair - don’t get upset, it’s not like the electric chair! She told me that as I was having FEC, the cold cap treatment was viable but only worked in 10% of cases. I figured I had nothing to lose - except my hair! They gave me a voucher up to £130 to take to a hairdresser/wig shop in Plymouth, and I got a wig before I started chemo. The wig was fantastic, but I never really needed to wear it, only on a bad hair day. My hair did thin a lot on top but nobody really noticed, or were too tactful to say anything. The funny thing was that my hair stopped growing during the 4 months of chemo, and when it grew again it was very curly, just like Kylie Minogue’s. It was brilliant, - no more messing with a hairdryer or hot brushes - I just put my fingers through it and let it dry naturally. It is now back to it’s unruly self, with waves that I have to tease into shape.
You don’t mention which chemo you are having, and as mine was 5 yrs ago, you are probably not having FEC, but one of the taxols. Do ask if the cold cap is appropriate. It may work, as it did for me.
Take care,
Liz.