Well, friends, I am off the Avastin trial. My ct scan this week showed that I have progression - two new lymph nodes with cancer. The doctor described them as “small” - but 1.4cm and .8cm sound big to me. If I swallowed a marble that size then I would know about it.
Feeling very fed up. Had hoped to get longer out of the Avastin. I only finished taxotere/avastin in June, so it’ been five months since finishing chemo and nine months since starting.
Have come home from the hospital with a supply of Femara in the hope that I may now be truly post menopausal and therefore that it might work better than the tamoxifen, arimidex and aromasin. May be moving onto capecitabine, but will have a meeting with the Phase 1 trials team at the Marsden to see if there is anything else on offer.
Oh Deirdre - that’s not good news is it! I had a scan on Tuesday with results next Tuesday - I am about four weeks behind you so I always look out at your reults with interest. Xeloda seams to work well for many people so hopefully you’ll get this thing under control again.
Dierdre - just to let you know you are not alone. I was taken off the avastin trial at the marsden last month - now on femara too (with zoladex) Xeloda was also mentioned, although I started to lose the plot at that point, and just on hormonals and zometa for now.
All I would say is I too was absolutely gutted, but now having digested it a bit better, I had amazing results with avastin with taxotere, it just wasn’t good enough to hold it alone, and as my cancer is so hormone sensitive, I figure I needed the hormonal treatment, which I couldn’t have in conjunction with the trial. Am trying to be as positive as I can that it will work.
If you find out of any other trials I would be interested in hearing about them - I wasn’t offered to meet with any trial team, but then I’m not too good at communicating with the medical team, think I was probably in tears or something. I’m not very good at any of this generally but thats another story.
All the very best. Feel free to PM me if you want to compare notes at all.
Trying to get my courage up to call the Marsden this week to get the results of my hormone status. Keeping fingers crossed that I really am post menopausal. Funny, isn’t it, what you wish for?
It sounds to me that you are definitely pre menopausal - otherwise they wouldn’t still be giving you the zoladex shots. My periods returned after I stopped the zoladex - I cannot believe that my body can in any way believe that it would be a suitable candidate for pregnancy. The thing that gets me is the feeling that all my feminine bits are being taken away bit by bit. After my chemo I now even have a funny sort of side burn thing going on - I wouldn’t be surprised if I grew a beard.
SO… if you see a bearded woman with hair like a toilet brush out walking in the park with two daft dogs (a collie and a lab) then you’ll know it’s me!
Well, it seems that I am most probably post menopausal - my results show that my hormone levels are quite low, although my doctor did say that they weren’t as low as they might be and I could be mid cycle instead!
We have decided it is definitely worth giving the hormonals a try. It would be great if they were able to keep things stable without having to go onto chemo again.
I am seeing the trials team at the Marsden on Wednesday - will let you know what they have on offer.
Hi everybody - saw the trials team at the Marsden today. They have a very interesting trial of a new type of hormonal drug - completely different to tamoxifen and the aromatase inhibitors. They think I may be eligible for it and they are very excited. It’s been very successful in prostate cancer and they think its action will be very similar with breast cancer. I have to have lots of scans, tests etc before being accepted, but think I will go for it - I really don’t want to go back onto chemo. I am going back next week to give them my decision and to start the process. I have to wait four weeks before starting so that there is no trace of Femara (which I have been on for precisely ten days and must now stop) in my body.
Dear Deirdre,
I wish you lots of luck , and hope that this new trial will go well for you.
For the time being I am still on the Avastin/Taxol trial, and will have my 2 nd PET-CT scan at the end of this month. I began at the end of May, and my onc. has just reduced the Taxol to once every 4 weeks from 3 times every 4 weeks. The Avastin remains the same at every other week. I am hoping that the Taxol reduction will help me feel a lot better, as I am really beginning to suffer a lot from its side effects.
Most particularly my leg has been giving me a lot of pain and I can only hobble around. I do not know what it is - muscular, new tumour pain, thrombosis or what? It is bad enough that it interferes with my sleep.
Keep us posted on what the new hormonal drug is, I am sure that everyone here will be very interested.
Best wishes,
Penny
Good luck with you second scan, Penny. I confess that I didn’t really think the Avastin was giving me any horrible side effects, but since coming off it I feel a lot better. I noticed that I used to bruise more easily and definitely felt fatigued. Now I am on nothing at all, waiting to start the trial and my recent oncologist’s letter to my doctor described me as being “in excellent health”. Ha ha! Apart from the obvious of course.
I do, though, have a bit of muscular pain too in my left calf muscle. It has been there a couple of weeks and feels as if I have just been exercising too much, which of course I haven’t been! It’s hard not to worry about it, though. Has anybody else experienced this?
Going for screening next Monday and Wednesday. If all is OK I start the trial the following Tuesday (16th).
Deirdre - keep an eye on your calf - if it becomes even slightly red and tender it could be a blood clot - I know I’m a doom and gloom merchant but you need to keep an eye on it. Hope all goes well for your screening etc next week and you can start your trial on the 16th.
All the best Kate
Hi Kate, yes, I had worried about that. So I am keeping an eye on it. Problem is I can’t see it too well, so I have to ask husband to keep checking it out and it gives him an excuse to laugh at my newly hairy legs!
You may already know this but if you are concerned at all you can call NHS direct for advice from a health professional at any time (24 hours) on 0845 4647.