Geraldine check with Dr first but for me after ovaries were removed my hot flushes were really bad I found red clover and sage worked. With the summer we have had I think I would welcome a hot flush or two, I seem to always be bloody freezing! Love Debsxxx
I asked about the Lanzaporole at the hospital earlier this week - and was told it was a good idea to keep taking it, and that there were no downsides, it would just help with keeping my digestion good. Don't think it is mandatory, just a good idea.
As for the hot flushes - I would definitely say that is due to Zoladex. I am not on Zoladex at the moment (although have been previously and fear I may be again soon) and I don't have hot flushes, although they were an unwelcome part of life whilst on Zoladex - I suffered badly with that side affect.
Just bumping this up as it has been quiet for a month or so. How is everyone getting on? My avastin side effects appear to be down to bleeding gums which isn't bad!
Good idea I have bleeding gums, lost a few fillings but I think as I am on pamindronate for bones I will just have to get used to gummy bear look! Take care.
Hi Ladies, I am also on Taxol & Avastin, as part of the Roche clinical trial. It is interesting to read that you feel you are getting maintenance therapy. This has not been mentioned to me. I started at the end of May with Taxol every week and Avastin on alternate weeks. After 11 weeks straght (ie 11 Taxol and 6 Avastin) I had a break of 2 weeks for a trip and a PET-CT scan. The scan showed significant improvement. Yay! Feeling so much better after the break I said to my onc. that I could not continue like this without planned breaks, so she agreed that I could have 5 weeks on (ie 5 Tax and 3 Av) and then a break of 1 week. She thinks that I will be doing this for at least a year!! I have not heard of anyone else here doing both for a year. Thoughts, please!
As to side effects, they are much more manageable than the chemo that I had before (TAC). No nose bleeds, just a bit of blood when I blow my nose. No hot flashes. Just taste changes, which has helped me to lose the 20 pounds that I needed to lose! There is considerable numbness and pins and needles in my toes and fingers, which is a big problem as I make things to sell. I had my ovaries irradiated when I received rads to my lower back to help with the pain, and I still had a mini period during my 2 week break!
Did have some indigestion. But Rennies were enough to deal with that. It seems to have passed, and is always better if I keep away from eating carbs.
My hair seems to be growing back as well! I definitely have new eyelashes.
I am not on a trial. My avastin is through my health insurance. My onc clearly believes that for the right patients avastin could be akin to herceptin but is also clear that it is unproven. He has described at as maintenance ie my tumours have responded well to the chemo/avastin combination and he is maintaining them through avastin and hormone treatment.
Interesting that you had your ovaries zapped - I am on zoladex and femara to stop them working - I have said I would be happy to knock them out permanently if there's a benefit. I assume your are hormone +?
Hi I am about to start Taxol and avastin, we are noy sure if my insurance company(BUPA ) will pay for maintenance Avastin, wondering which insurers you are with Gerry Kathryn
I am with axa/ppp who are meant to be the meanest! They have agrred to pay for a year - aftter that i hope to get through the nhs if its still working.
I was on Zoladex for 2.5 yrs and argued with my onc. about coming off it. I guess she was wrong on that one.
I think that they decided to zap my ovaries as they were in the area anyway trying to give me pain relief to my sacrum. My first response when they told me that this is what they were going to do was " won't that give me ovarian cancer?!!!" They said not to worry about that! I already have cancer, and maybe wont be around long enough to develop that one - although they didn't say that.
When I had my recent mini period, the onc. gynae said depending on my blood hormone levels he would prefer to remove the ovaries surgically than put me back on zoladex. Fortunately the levels were low enough for me not to need to do anything for the time being.
Been to the Onc this morning. My wife ( 11 sessions taxotere, 18 months Xeloda & just finished 9 FEC ) is being given weekly Avastin, any other ladies on this and any more idea´s of side effects on this regime ?
Hi Terry, I was on tax and avastin from Feb to May. 3 weeks on one off taxol for me was very tough so having chemo break for as long as possible. I have avastin every 3rd week with pamidronate. Avastin has been easy for me just started with the conjestion in nose a bit of a fast heart beat a little raise in blood pressure but that is all. Reading it back sounds worst than it is! I think you are in Spain maybe there they give it weekly here it is usually every other week with Taxol. Hope it works well for your wife, I am so grateful that I got it, it is gining me lots of extra time.
Avastin has given me blood pressure problems but that is under control through every day meds. I have gums that bleed when Ibrush my teeth more than before - but OK - just using mouthwash to prevent bacteria etc. Apart from that my side effects are hormone related. Avastin is OK!
Good luck to you and your wife - hope avastin does its job.
I am on maintenance Avastin and don't have any real worries with it. A bit of heartburn, so I take lanzaprozole (when I remember) and my nose seems to still run a bit - not sure whether that's because I still haven't grown any nasal hair or whether it is the Avastin. My blood pressure is up a bit, but still within normal range. My heartbeat is sometimes a bit fast, but again nothing that is of concern. All in all, Avastin doesn't seem to have any really bad side effects for me.
This is so great to read everyone's comments. It really helps. It is kind of cool that we are the pioneers for Avastin - although of course, I really wish that none of us had to have anything to do with this.
I get the runny nose thing too , and a kind of hoarseness with my voice. It kind of runs out of strength - shame as I cannot shout at everyone so much , or maybe that is a good thing! I have a hard time walking and my legs feel rather wobbly, but I can drive just fine. I used to be very fit, so it feels strange to feel my heart race when I walk slowly up a hill.
Sorry debsincornwall, your post did not appear with whether you were her2 + or - ?
Penny - hope you will pick this up! Your post is great - I have a hoarse voice which as you say seams to peter out! And I get breathless walking up hill. I hadn't equated these side effects to avastin but I will now.
Yes, I puff and pant walking up hills. Thank goodness it is relatively flat round here! Also can identify with the voice thing. NOt only has mine not got the strength it used to have, it is also much lower. Recently I joined a gospel choir and was surprised to find that instead of being a soprano (which I always used to be) I am now a bass. Could be the menopause, though.