Cold cap advise please

[Ginger21]

Hi Sam

I was dx a year back with extensive bone and liver mets and lymph node involvement. Primary was 11 years ago so had 10 cancer free years on Arimidex. I was v ill when diagnosed with Stage 4 and could hardly walk because of mets to spine etc. (Went undiagnosed because GP took Xrays and bone mets didn't show so was being treated for arthritus). 

Have been on Eribulin for 6 months. It reduced some liver mets and gave me back my life. Found it very easy after first couple of cycles. Had no side effects but Onc thought best to give it a break as she was worried about possible toxicity. I was stable or improved on all scans. Now on Tamoxifen and hoping it will keep things stable for as long as possible.

Hope all goes well with Eribulin and further hope you are soon back on hormonals. Eribulin was great for me xxGinge

[Sarn123]

Hi ginger thank you for your reply, so after the nine cycles had your secondaries reduced? My I ask where your mets are? Did you get many SE effects, I've just finished my 2nd cycle and feel ok, bit tired but nothing major. I've had secondaries to lung , liver and bones for 4 years so had a number of treatments, but done well on mostly hormones for past two years. I had progression to my liver on last scan, hence the erbrilin.....sarn xx

[Ginger21]

Hi Sam

I was on Eribulin for 9 cycles and did not lose my hair. Lost a few strands at the start but then it levelled out. Found Eribulin very doable and was stable throughout. Was taken off re toxicity a few weeks back and am now on Tamoxifen. Hope this helps 

[Sarn123]

Hi bumpkin thank you,I haven't lost much body hair so I did think that was a good sign! Can I ask how long you was on ebrilin and how did it work for you, and did you  experience many side effects? Hope you are doing well now love sarn xxxx

[Bumpkin]

Dear Sarn

i don't have experience of the cold cap but I have had Eribulin.  I kept my hair, as many women do, so please keep positive.

best wishes

Bumpkin x

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@Sarn123 wrote:

hi I haven't posted for a while and have recently started ebrilin, and using the cold cap as have lost hair twice before and thought I'd give it a go! I had my 4 th treatment today and feel like the cap was not as tight as previous times, plus not as painful, up to now it's worked brilliantly with no hair loss. On previous times once removed there is still traces of ice and imprint of cap. But today just cold and wet. I now feel really anxious that they have used the wrong size cap and it won't work so I feel like I've wasted all the times before and feel really angry if this is the case!!!! Has anyone had this  experience and can give me some positive feed back please. I wear a small cap and I think maybe a medium one was used, the lovely nurse who has always done it before was off today and when I said it didn't feel the same I was just told I've got use to it! Any info would be most grateful, thanks sarn 123 xxxxxx

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[Sarn123]

hi I haven't posted for a while and have recently started ebrilin, and using the cold cap as have lost hair twice before and thought I'd give it a go! I had my 4 th treatment today and feel like the cap was not as tight as previous times, plus not as painful, up to now it's worked brilliantly with no hair loss. On previous times once removed there is still traces of ice and imprint of cap. But today just cold and wet. I now feel really anxious that they have used the wrong size cap and it won't work so I feel like I've wasted all the times before and feel really angry if this is the case!!!! Has anyone had this  experience and can give me some positive feed back please. I wear a small cap and I think maybe a medium one was used, the lovely nurse who has always done it before was off today and when I said it didn't feel the same I was just told I've got use to it! Any info would be most grateful, thanks sarn 123 xxxxxx