Avastin funding

I wont feel guilty about the odd latte and muffin then!! and i do want to put on a bit of weight as after diagnosis in Dec i was so stressed i lost a good 10-12lb - was paranoid that it was the secondaries eating away at me but think it was just stress! Maybe there is a lot in the saying “a little of what you fancy” being good for you.

Well i suppose if the hormone treatment was doing its job sucessfully you wouldn’t be going for the trial drug so it makes sense. Again i hope it goes well - will be watching for your posts

Thanks

Maria x

Dierdre

You have made me laugh , post my primary I lost about 40 lbs went running three times a week, drastically reduced fat and alchohol consumption and WHAM look where that got me by 2007, massive liver involvement and a few bone mets thrown in, clearly I was nourishing the cancer as well! Being serious I suppose I feel I tried, being sad I think why did I bother!

As for Avastin Maria - I am on it, jury is still out, i think it is helping, but if I had to pay for it myself I wouldn’t and couldn’t as the costs are extraordinary…

Cathy x

Hi Maria

I’m on Avastin and am doing okay so far without too many side effects. I had liver tumours last year of which presently are now in remission through a procedure called chemoembolization and then laser to remove them completely. I am however having problems with my bone mets at the moment which is causing a considerable amount of pain in my right hip.

I agree with what you say Maria in that anything is worth a go. Drugs work differently for everyone and not one drug works the same in other people. I’ve had a test called chemosensitivity which determines which chemo best works against your cancer. This means that you are not wasting your time on a chemo that won’t touch your cancer. When I was diagnosed with secondaries I was put on Taxotere. I only managed 4 cycles due to the bad side effects including being admitted to hospital for a week with septicemia. When I had another scan it was found that the cancer had grown whilst on Taxotere and then 3 months later I had the chemosensitity test which showed that Taxotere would do nothing to fight against my cancer.

We can’t give up hope and we shouldn’t discourage people from trying drugs which may not show promise in clinical trials. Each to their own but as I said before drugs work differently for different people. What about anti-biotics which work for some but not others, surely cancer drugs must be the same. I’ve met a gentleman who was recommended herceptin through the chemosensitivity test for his prostrate cancer. Herceptin has not been passed for use in prostrate cancer but it has worked for him and he is still in remission.

Good luck in whatever you choose to do.

Spike
xx

Cathy - definitley going to get a nice slice of cake with a coffee today - although think eating more fruit and veg is doing me good anyway - don’t want to be nourishing any growth. Won’t be able to pay for Avastin if i need it but have come up with some fund raising ideas which i will need to put into action and then if i don’t need it before it becomes available on the NHS i can donate the funds to breast cancer unit at my hospital.

Spike i totally agree with different cancers sensitive to different chemo - don’t know why chemosensitivity isn’t done at time of biopsy - wouldn’t that make sense? therefore treatment would be way more specific - if you have an infection and need antibiotics in hospital they send off blood cultures and see what bacteria is growing and can therefore give you antibiotics to target that bacteria. I did have a good response to tax (for primary) but not to FEC - and although side effects of tax not pleasant for me FEC was even worse. Did they offer you an alternative chemo after testing - could they tell if Avastin would have a good effect from the chemosensitivity test?

Maria

Hi Maria

Xeloda was shown to be a good chemo for which I have been taking on and off for a couple of years. Navelbine was also another drug and gemcitabine which unfortunately is not funded by my PCT. Tyverb also showed promise on the chemosensitivity test but again this is not funded but I have managed to get Avastin. As I said so far so good.

Best wishes.

Spike
xx

Dear Maria,
Hi! I live in Israel and until October 2007 enjoyed almost 6 years of good health after my BC diagnosis in August 2001 at age 35. Had a lumpectomy, Taxotere with AC, rads, Zoladex and Tamoxifen, back then.

When I was finally diagnosed in April 2008, after 6 months of terrible back pain, mets in lots of bones and a couple of lymph nodes in my abdomen, I had 12 rads to the lower back and to knock out my ovaries as I am ER+. Then I was signed up for the Roche trial and started at the end of May getting Taxol every week and Avastin every other week. I have had 2 scans since then with encouraging results - the last one showing little or no uptake of the radioactive dye. I feel much better and have been able to reduce my painkiller (Tramadex) to almost nothing - i.e 15 drops a day instead of 80!
My onc. did not give me any other choice of treatment as she felt that this was the best that was available for me.

The Taxol has been difficult to endure, but after the first 11 weeks, I started having breaks. I had 11 weeks straight, then a 1 week break, then 5 weeks and a 1 week break, 2 lots of 3 weeks with 1 week breaks, and now I still have Avastin every other week and the Taxol just once every 4 weeks. I also have Zometa every 4 weeks. This is way more manageable, and I have much more energy. I can walk again and feel my quality of life has really improved.

Perhaps you can look into getting on the Roche trial?
I wish you all the best on this horrible, difficult path.
Penny

hi penny - i’m er+ve too - have asked for oopherectomy and was told to hold fire and give myself a chance so having zoladex.

you must have been absolutely gutted to get mets after getting over the 5yr progression free period - i have it in my head that if it doesn’t progress soon and i do enough - drug wise - to put a cap on it now that it will prevent further progression so i hope the avastin gives you the longevity i’m expecting.

thanks for your post. will have a look at trials but don’t think i can get onto any here and as i don’t need it just yet as onc wants to see how i go on femara therefore he won’t be referring me to take part in a trial.

did you have any children before your diagnosis? i don’t know why they are reluctant to take my ovaries - as they have been quite frank about me never having children - i suppose there could be a miracle break thro into stunting BC from advancing - who knows?.. live in hope

take care

Maria x