Breast Cancer Now Forum

I had all 18 Herceptin injections but there have been trials that say 9 or even 3 of them are as good as the entire 18. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(19)30650-6/fulltext   So perhaps that will help you decide. Good luck with whatever you do. ... View more

I had all Docetaxel and Carboplatin with Herceptin because I take statins and blood pressure medication so they would not give me FEC.   The Docetaxel is not bad in terms of feeling sick but it really makes you feel tired and full of aches. It is the sort of tiredness that is not relived by staying in bed either. Days 3 to about 7 are when you will feel your worst.  Before that the steroids are holding the side effects in check and after that your blood starts to recover and while you don't feel wonderful you certainly know you have turned a corner. Anyway it will soon be all in the past - mine was 4 years ago, if the Herceptin gives you a running nose or aches take Claritin hay fever tablets.   You will be ok xxx  ... View more

If you get aches and pains take claritin hay fever pills and they are greatly reduced. ... View more

If the Herceptin is giving you aches take claritin hay fever tablets and if it lowers your heart ejection fraction take Pycnogenol & CoQ10. I copied this from a post I made a while ago when someone asked about the heart:   The supplements you want are pycnogenol and CoQ 10. http://www.doctorshealthpress.com/heart-health-articles/the-heart-strengthening-tag-team   The combined one they mention is hard to get but you can get them separately from Amazon. I get the Ubiquinol 100mg because that is supposed to be absorbed better.   My first echo scan was 55% and my second was 60% I took the supplements a week after the first one because they said if mine dropped to 50% they would not give me Herceptin. They already stopped my chemo because my blood counts got too low!   ... View more

I could only have docetaxel (with carbo) due to issue with my heart and they stopped me after 4 (I should have had 6) so I know what you are going through. You will feel better but it will take a long time. My water retention took two years to finally leave. It is very early on in your recovery so rest a lot and have nourishing food. When you feel up to it start going for walks. ... View more

You mean the COLD cap! I kept lots of hair and basically it is like a highlighter cap that you used to have for streaks at the hairdressers. They put it on and plug you into a socket and you head stays cold for a few hours.   It is a bit spiteful but if you take painkillers 30 mins before it is not too dreadful. Oh and have a look into fasting before chemo I did that had had far few side effects. There is a thread on here about it, lots of us have done it. No tummy issues, no thrush, no mouth ulcers etc. You do still feel tired and you do still get a bad taste something like metal in your mouth. ... View more

I used the cold cap with great success but  I still had a few areas of thinning. Don't fuss with it because the roots are delicate and so respect that. When your treatment is over the thin spots fill in rapidly. ... View more

I belong to a Facebook group and someone put op this link: https://www.canceractive.com/article/low-dose-naltrexone-ldn-as-a-cancer-treatment   ... View more

Mia, Thank you for the response.  I take it as given that your team have a relevant type and level of education one would expect of  Public Relations or Charity professional employees therefore I am surprised  that your team have failed to harness the huge amount of freely available expertise available on this forum.   Although not quite as spectacular as the Susan Boyle PR disaster: https://www.telegraph.co.uk/women/womens-life/9698831/Twitter-hashtag-PR-disaster-Susanalbumparty-Id-love-to-go-says-Katy-Brand.html   Nevertheless the team have caused upset and grief and ought to have known better. I have been a "flack catcher" myself in a previous capacity  and I learned rather quickly to avail myself of bone fide resources such as this forum could provide.  Free, gratis and for nothing.   We will get a couple more placatary responses but you will get the gift of experience of how not to do something. ... View more

I had mine drained twice 40 mil both times. ... View more

I had Paget's disease and lost my nipple, I was offered reconstruction but turned it down. I simply don't want to be pulled about anymore BUT I had surgery, chemo, radiation and Herceptin.   I had a tattoo but it did not last and I have a stick on nipple that attaches with eyelash type glue but I never wear it! ... View more

Vanessa, If you get diarrhea and/or sickness you might want to try fasting for 48 hours before your treatment. Lots of us fasted for chemo to lessen the side effects and this is why: https://www.youtube.com/watch?v=LGafhm1cuSI&t=158s   Have a look at the two mice at about 38 seconds in. There is a long thread about it on here (do a search if you are interested). The ideal fast is 48 hours before, the day of and then eat the day after your treatment. If you cannot manage then the fast before is the most important.   Also make sure your vitamin D levels are adequate.   ... View more

Yes I feel the same! There is also a book which I have read https://www.amazon.co.uk/Her-2-Making-Herceptin-Revolutionary-Treatment/dp/0812991842/ref=sr_1_1?crid=XQSIO4P6DUHC&keywords=her2+the+making+of+herceptin&qid=1573386135&sprefix=Herceptin%2Caps%2C170&sr=8-1   If you read the comments/reviews at the bottom of the page you really do begin to count your blessings. ... View more

Hello,   The choice is yours but you might want to know what you can do to help yourself with chemo. I had all docetaxel and carboplatin due to heart issues. Well I needed Herceptin and than can damage your heart so I could not have the usual FEC because that can damage your heart as well.   I had 4 out of the proposed 6 rounds because my blood counts went too low to continue. I had minimal side effects because I fasted for 48 hours before, the day of and I started eating again on the morning after my chemo. I followed to research by Valter Longo, have a look at this and compare the mice at about 38 to 60 seconds in: https://www.youtube.com/watch?v=LGafhm1cuSI   A few of us have fasted and there is a thread on here with lots of info on it. I also used a cold cap and kept lots of hair.   Good luck with whatever you decide. ... View more

I just want to add my opinion on the dreadful choice of words.   If you don't have any ideas in your office for suitable words/language/terminology a sensible idea might have been to ask on here.   Whomever is in charge is likely well paid and I expect very "market" savvy but they have not one jot of common sense or compassion.   Incidentally, I don't like the new name of Breast Cancer Now but it does not offend or upset me. ... View more

This is such sad news - very sorry to hear that we have lost a lovely person. ... View more

The Paxman is much easier because all you do is put the cap on and it get plugged into an electrical socket. The Penguin cap - well caps you need a few of them mean you have to have an ice chest and change the cap about every 30 minutes as the ice melts.   Paxman has only recently become available in the USA because the insurance companies refused to fund it (they said it was cosmetic and as such unnecessary) Even now some refuse but some allow it - if yours refuses is cost about $500 per session and most people get 6 sessions. ... View more

About the side effects - take Claritin hay fever tablets. They help with the runny nose and the aches and pains , I gave a link about them somewhere near the beginning.   Also watch a film called Living Proof it is all about how they brought Herceptin to the market. https://www.imdb.com/title/tt1229367/   this is the real doctor behind it all: https://www.youtube.com/watch?v=vsa7oTsYaEE   ... View more

About the side effects of Herceptin, I think what the doctors mean is that the side effects when compared to chemo are minuscule. They are when you think that a few aches or a runny nose with Herceptin is NOT life threatening. Strong chemo can leave you with permanent damage to your nerves and blood or bone marrow which is why they are always looking at your blood to see if you can have it.   Even if the Herceptin impacts your heart (which is why you have echos) it sorts itself out if they stop giving it to you. So basically the side effects are "statistically insignificant" that does not mean that they do not exist. It is a term used by scientifically minded people to evaluate figures.    ... View more