I have just been accepted into the active arm of the trial, starting chemo next week. I’d love to hear the experiences of others in the trial. My SLNB was yesterday so I will only have 9 days between surgery and starting on Avastin. Has anyone else experienced such a short interval?
Hello Fiona, this is outside my expereince but I am BUMPing up your post so that someone who can answer might spot it! I am on Tamoxifen and started that 14 days after surgery, so maybe not so different?
I hope all goes really well for you with the trial.
Thanks so much for answering RevCat and bumping it up. I’ll give it one more go with this comment and then I guess I’ll have to go it alone on this issue anyway.
The science is really interesting - Avastin stops blood vessels forming, so the idea is that it stops the tumour and any secondaries growing by cutting off the food supply. That’s why I was nervous about starting so soon after surgery - it might stop the wound from healing properly. But 7 days on it doesn’t hurt even if I poke it, so I’ve stopped worrying.
I’ve been trying to get my head around some of the medical journal articles I can find on the web. The hope is that this drug could make a real difference for TNBC but the side effects can be pretty bad. I guess that they can’t be too appalling or I would have found some mention of it on the forum.
Hi Fiona
I have triple neg secondaries and have also been following Avastin in the news. My onc has been quite luke warm about giving it to me, but everything that I’ve read suggests that it holds promise for triple neg cancer. Hopefully, my next step will be to join the PARP inhibitor trial because I’m BRCA 1, but I haven’t given up on Avastin. There’s a lady on the triple neg thread who’s been doing well on just Avastin for about a year. I wish you well with the trial, please let us know how you get on.
Moondog x
Hi, yes, I’m on the trial. I had chemo first, then surgery, and am about to start rads.
I had FEC T with Avastin, the T part first with 3 Avastin and then final Avastin with the first FEC. (did that make sense?) I had really good results, with very significant reduction of a large tumour , so obviously I’m thrilled. SE as listed are pretty scary, I had a trial nurse who was very good at checking up on me. I did feel fairly cr*p but it could have been the same from just FEC T, awful fatigue, constipation, mouth and throat problems, sickness (only on the T ), weird taste, neutropenic…you know, the usual stuff. But it was all doable and given the result well worth it, plus they do some extra scans so you have that to spur you on too. Good luck with it xx
Thanks ladies, perfect timing. Chemo clinic tomorrow and first infusion on Thursday. Awesome result Ali - good luck with the rads
xxF
Hi - I was on trial 2 years ago. I had 3 Tax with Avastin 1 Fec with Avastin then a further 2 Fec. I ended up in hospital the week after my first treatment with neutropenia. They pumped me full of antibiotics and all was well, after that I had the neublasta? jab the day following treatment to pick things back up. During 2nd treatment I had a reaction to treatment so they had to stop and give me intravenous antihistamines. Was all bit odd as I couldn’t stop sneezing and my face was on fire! Nurses were terrific and very quick.
All was quiet for the following treatments, although if I remember rightly I had extra steroids and piriton before treatment. I had treatment on a Tuesday, the Wed & Thurs were okayish, Friday I was completely floored could do nothing but sleep. After that things picked up again, found the tiredness lasted longer with FEC.
Side effects not nice but definitely doable and like Ali H had good results with one tumour disappearing, one shrinking by a good deal and the other just not caring and staying put!! Originally had 3 nodes with cancer cells and this reduced to 1 after treatment.
Treatment finished just before New Year, had mx in Feb and then 20 rads in April.
Now everything is still good, prognosis was very good. They downgraded me from 3 to 2 so all in all definitely worth it.
Thank you! I think that your experience might have been common as I was told that they now automatically give all trial paricipants a white blood cell booster the next day - it is slow release and lasts a week. I have my appt in 2 hours.
How did you get on Fiona? Yes, I forgot to mention the White cell booster jabs, I had to do them at home for 7 days from day 4 I think (or the district nurse could have come in). Easy to do and not painful, injected into tummy (ie a roll of fat!). Watch out for the back ache when they start to work though, paracetamol will ease it xxx
2 tries to find a vein. Warned I might need a PICC line if they have trouble next time. Avastin was fine, but v slow - 90 mins for dose one. Docetaxel was terrible like acid into the vein. A little bit tender along the vein line today . Also, because they used the vein on the little finger side of the wrist and I have hyperflexible joints, I kept moving my hand without realising it and blocking the flow, so I’m going to ask them to put some micropore tape on the underside of my wrist to remind me what is the straight line.
Felt super energised on the steroids and thought I would make it to a birthday party, then had to go back to hospital for a booster - big jab, slow release but just the one. That took 3 hours there and back and I suddenly cratered. Got my first decent sleep last night though as the steroids are wearing off.
And just to answer the question I started this thread with. Healing has been fine. I took Vit C & Zn supplement before and after surgery and made sure I ate sufficient protein. I stopped the vit C the day I started the steroids as they don’t like you taking vit c supplements with chemo. Normally scars get most of their strength back 30 days after surgery, so I’m going to asume 6 weeks to be on the safe side before I start any serious stretching or massage rehab that could open up the wound. And I’m going to go back on the Vit C and Zn on days 10 to 20. Until I’ve finished the packet. Your body excretes the stuff it doesn’t use.
Hi Fiona
So glad it isn’t just me that kept blocking the flow! Your veins will probably stay a bit tender and mine had little hard lumps after a bit, but this was all fine. I also only had the one injection the day after, I went to docs to get this done, couldn’t imagine doing it myself, it also made me het out and do something the following day rather than just spend the day in the house.
Glad it all seems to be going well for you, hope your results are as good as everyone elses seems to be.
Whilst I remember, one more se I had was a constant runny nose (not sure if this was because I had no hair in my nose!) and about half through really watery eyes. There were times I could see people looking to see if I was crying, quite embarassing! I found the spray that you put on closed eyes really helpful & sunglasses as they also seemed to be sensitive to light.
x
I think I might welcome the runny eyes, I’m using hypromellose drops at the moment because min are so dry.
I may have been a bit overoptimistic about the wound healing. The scar got a bit hot and itchy, which I thought was it healing, then I ran a temp and so have been admitted to chemo ward for 2 days, on day 2 a little bit of the wound opened and some pus came out. They swabbed it to be sure and I will hear that result on Monday, but it’s likely that it was the source of the temperature and will be killed by the antibiotics they gave me.
I asked the doctor if this was the kind of wound healing problem that meant people had to come off the trial and she said absolutely not, I should not worry about that at all.