Hi everyone,
Haven’t been on the site for ages,though used it a lot with my initial BC.I have bone secondaries and have just finished 6x Paclitaxel combined with Avastin and Zometa.Scans show the tumors are “stable”.
My onc wants me to continue on avastin indefinitely,though ins co will not pay.Anyone else in the same boat, or anyone had avastin and has it worked??
Please reply, love Rosiebear x
Hi Rosiebear,
I was diagnosed with secondaries in my lungs and lymphatic system last Feb. I had 8 weeks of paclitaxol with Avastin from last March to May.The next scan in May showed amazing results - the 4 very active lymph nodes around my upper clavicle had completely disappeared and one of the tiny nodules in my lungs had shrunk and the other one was stable. I then had 6 further weeks of the same regime - the next scan showed the nodules in my lungs as stable although not showing as active at all and my onc. said he couldn’t be definite they were mets. Anyway he then wanted me to stay on maintenance Avastin only but like you my insurance company (BUPA) refused to let me be on Avastin without the chemo due to not enough evidence to show that it is effective on its own (only because it’s so new and the data is not available yet). Anyway after much soul searching and discussion with my oncologist I agreed to go back on the taxol in combination with Avastin (my onc. reduced my taxol dose by 50% as a compromise as I really didn’t want to go back on chemo if I didn’t really need to)and did 8 more lots of Taxol/avastin till mid November. My latest scan at the end of November was completely clear - nothing showing at all - so my onc. said the nodules in my lungs must have been mets but they’re not there now (well then!). My oncologist agreed to me staying off chemo and Avastin for the time-being as I’d got into such a state after 9 months of the regime (my husband left after the first 8 weeks of it and pulled a divorce on me!!)and my next scan is on 27th Feb. I’m also on Arimidex and Zoladex injections. I’ll never know how much was the Taxol and how much the Avastin and it’s all quite contraversial with Avastin but for me something has worked to amazing effect so far so I’m incredibly grateful. My onc. seemed to suggest I might be able to go on Avastin again in combo with 2 other different chemos so we’ll see but it was definitely worth persevering those last few months as each scan was progressively better.
Anyway, hope that gives you some hope. I felt terrible when BUPA refused to fund Avastin alone and I was left in limbo on nothing for a month while it was sorted out!
Take care and keep in touch with how you get on xx
Thanks Anne,
I am seeing my onc on Monday so will show him your post and see what he has to say.
Love Rosiebear.x
Hi Rosiebear
I am on Taxol and Avastin, due to have Taxol number 14 tomorrow, BUPA have agreed to pay for continuing Avastin for about another 12 months or further progression. I don’t know what my oncologist said to persuade them, well I can guess as the outlook was quite bleak. I will have a scan when I finish the Taxol but my tumour markers have been coming down steadily. Anne, what other chemos was he suggesting that Avastin could be used with?
Best Wishes Kathryn
Hi Rosiebear,
I am on tax and avastin and I have been since last Feb my situation is a little different. I wanted to co pay and then the government ruled out co payment. Long story… I was lucky the media picked up my story, I went to Westminster. In the end due to my condition worsening my trust gave in and I have been on it ever since. Still fighting for it to be given to those who need it.
I don’t understand these companies avastin is, as I understand a long term drug, as long as it is working they should keep you on it. I was able to have a chemo break in May last year went back on tax in Nov. I know it can be given with capecitabine which is a kinder tablet form chemo, so maybe you could go on a very low dose?
Good luck hope you are able to sort this out.
Love Debsxxx
Hi debs, good for you for keeping up the fight for avastin. I dont have private insurance so if I ever need it my only hope will be to try and fund it myself. If you ever need any support let me know…Fay :o)
Hi again all,
In answer to your question KatieP my onc. said Avastin can now be given in combination with capecitabine (xeloda) as Debs mentioned and also taxotere which is similar to taxol.
Have BUPA agreed to you being solely on Avastin KatieP? They wouldn’t let me last July without having it with taxol which I continued on at a much lower dose and my onc. thought they wouldn’t have changed their minds but it might be worth asking again if they’ve ok’d you for it.
Take care all,
Anne
Hi
Yes Bupa will agree another 12 months Avastin on it’s own. My chemo nurse said that they had refused it for another of her patients but have now changed their minds. She has also said that I could have up to 12 months on Taxol , it does seem to be working so I am not sure whether to press ahead or ask for a chemo break and go back on it if the markers start going up again
Love Kathryn
That’s really interesting Kathryn. You sound to have had similar treatment as me. I was on taxol/avastin from March till November last year.I asked for a chemo break at the end of Nov when my latest scan was completely clear as 9 months was hardgoing but my onc did initially want me to complete the 12 months on taxol/avastin.Easier said than done!! I got excited when you said BUPA had changed their minds regarding Avastin but have rung them this morning and a lady from the clinical department very firmly told me they haven’t changed their stance and won’t fund it on its own without the chemo.Have they actually pre-authorised it for you on its own? My onc. just expected that they would fund a further 12 months on Avastin on its own but they refused just 2 days before my treatment was due!Of course I have no idea how much was the taxol and how much the Avastin produced my excellent results but I could stomach the thought of being on Avastin for a year without the chemo. I’m just hoping my scan next week is still clear and I don’t have to consider more chemo options as I’m just beginning to feel more like myself again 3 months off chemo!!
It’s interesting to hear other people’s treatment plans and experiences.
Take care,
Anne