in terms of hair loss from chemo, I’ve completed 18 weeks of FEC-t, all of which causes hair loss. I used the cold cap. I can send you a photo of how much hair I kept. It’s thin but I’ve kept hair over most of my head. You put the cap on for about 30 minutes before chemo and keep it on until 30-60 minutes after the IV stops. It’s very painful for the first 10-15 minutes of the first session, but then your head gets used to it and each session is less painful. I’m glad that I did it. I’m now almost 4 weeks post my last session and I have baby hair growing in the places where I lost it, plus I still have enough hair to have not used scarves/hats at all. I have used a wig if I’m going out somewhere special, just so that I feel more glamorous.
Practical tips for chemo - BioXtra is a saliva replacement gel which helps with dry/sensitive mouths. Reflexology can help relieve symptoms of tender feet due to neuropathy, wearing dark nail varnish can help reduce brown staining on your nails from Taxotere (don’t know why!). Use lots of body butter, face moisturisers etc to help with the dryness.
If there’s a Maggie’s Centre close to you, they do Hair Loss and Look Good Feel Better beauty sessions which are really helpful.
in terms of ILC, there’s a lot to learn to help you make the right choices for your treatment. It behaves very differently from ductal breast cancer, in terms of diagnosis, treatment and possible recurrence or spread. There are excellent Facebook pages which give you practical advice and signpost to latest research.
In terms of health advice
Most importantly ILC is more strongly linked to drinking alcohol than ductal cancer, so keep it to a minimum. My consultant said - holidays and celebrations. I’ve found the following drinks which I now really like -
Nosecco, which as it suggests is like Prosecco
Brewdog’s Nanny State, a hoppy/passion fruit beer
Budweiser and Peroni both do really good 0.5% lagers
Seedlip and Ceder are ‘gin’ equivalents which are ok, and absolutely fine if you add good tonics.
As far as diets go, the best thing is to eat a Mediterranean diet - lots of fruit and vegetables, fish, including oily fish such as sardines, small amounts of meat, limit bacon, sausages, ham etc, you’ll find lots of information on the web. Just keep it simple and don’t look at fiddly diets. There is no evidence that they work. I’m a researcher so have studied many of them!
There is some evidence that limited starving periods is useful eg the 8:16 diet - eat for 8 hours in a day only. But this should only be done after your treatment, in case you lose weight anyway.
I have recently diagnosed with Invasive Lobular Carcinoma with HER2+, I will start EC+THP - surgery then radiotherapy.
I am having a portacath put in on Friday and I haven't even started to look at hair loss solutions yet.
Is anyone in London and the South East that has any good recommendations for wig salons please.
Also, any recommendations on diet and lifestyle books to help with not allowing the cancer to come back and help with the immune system whilst going through treatment. There is so much stuff on the internet, plus I am bombarded by friends who keep sending me tons of links to read about stuff I'm not sure I want to believe in - is just too much for me.