Anyone on this concoction- am about to start this although not sure yet whether I’m having it weekly or 3 wkly I am sure they will sort it out at the 1st appt. Just wondered if someone knows about it to give me some tips and let me know how it is going for them.
Hi Wisdens
I’m just over half way through my course of Avastin and Taxol. Having it weekly for 3 weeks and then a week off, and a total of 6 cycles (ie 18 sessions altogether) - I think it’s usually given in this way rather than 3 weekly. In fact Avastin is given every other week so on week 1 I have both Avastin and Taxol. week 2 is just Taxol, and then week 3 is both again.
Cancerbacup do quite a good leaflet on both Avastin and on Taxol- though it lists loads of side effects. I had very few initially - in fact I felt really good for the first cycle of 3 - but gradually I’ve got more and more. BUT they have all been manageable. Good news is that I’ve had hardly any nausea and no sickness at all. In fact I now just have one dose of steroids iv and then take domperidone when I need to (usually just the first 3 days). I have had some major indigestion but am taking lansoprazole daily to combat that, which works really well.
Tiredness is getting to be more and more of an issue but I am still managing to work about 12 hours a week with my preschool children (I’m a speech and language therapist). Some afternoons I’m just whacked and I sleep but other days I’m fine until quite late into the evening. And by the end of my week off each month I’m actually feeling reasonably energetic.
I’ve also had a problem with my nose bleeding - not excessively but enough and frequent enough to be a nuisance. But then I’ve always had problems with my sinuses.
My latest problem is with my nails detaching themselves from the nail beds. Not very pleasant but I gather quite a common side effect. Evidently usually most of them manage to “hold on” until a new nail is growing underneath but one of my big toe nails is definitely about to give up.
Finally I have had a low white blood count each cycle by the third treatment, so I now have a neulasta injection after the 3rd treatment. And that can cause flu like aches and pains - but the onc gave me an anti inflammatory that helped with those so again its not been an issue since the first one.
Sorry if it sounds a long list (and I haven’t mentioned the hair loss but that’s to be expected isn’t it?) but really they are all manageable and I haven’t found it too bad at all. Most of the side effects I think come from the taxol - I certainly don’t feel any different week 2 (when it’s just taxol) to the other weeks.
The other thing to say though is that it is a lengthy treatment. Because of the chances of an allergic reaction, they gave me the avastin and taxol very slowly for the first few sessions. They also give me antihistamines iv to minimise the chances of an allergic reaction (which make me very sleepy for a few hours). So the first sessions really did take all day - we were at the hospital by 9.30 and rarely home before 6pm. Now it’s getting much quicker as they’ve decided I’m not going to have an allergic reaction so are giving the drugs at a faster rate.
Not many people are on this combination (I was my onc’s first patient on avastin) so do let me know how you get on. Kay x
Hi
Can you tell me how you were able to have avastin? I am trying to gain access to it but i am under the impression its not licencesed yet over here, correct me if i am wrong?
where are you being treated?
Thanks
jakki
xxx
Hi Jakki
My understanding is that avastin was licensed earlier this year for use with breast cancer (it’s been used for bowel cancer for some time) but hasn’t yet been approved by NICE. I also think it has also been rejected by NICE for use in bowel cancer as being not cost effective, which doesn’t sound too hopeful. Luckily my hubby has private medical insurance through work - the insurance company have agreed to pay for 6 months of avastin for me and are then reviewing it.
I’m being treated in Guildford.
Best wishes Kay
Thanks Kay really helpful… I have only just had my vinoralbine stopped as it wasn’t working so have neuropathy side effects still going on but otherwise was well so lets just hope as you say the hairloss is par for the course just as mine has started growing anyway need a wig to keep me warm for the winter. They did mention the allergic reaction as I have had one before so they are going to take it easy. I was pleased to see that you are working as I also am working through all of this but they are great moral boosters in our merry team of workersand keep me smiling and let me have my ups and downs.
I must go to the library and collect some good reading for all the waiting around… my onc was checking all the details so I don’t think there are many on this combination but I’ll get the fact sheet off the internet however they usually give you one at the hospital… it will be a different hosp from the one before as I think we have to be on a bit more supervision with this combination.
Jakki not sure about the accessibility, Just to say that I am quite far down the line and have had several chemo some worked for a while others didn’t so maybe I’m running out… keep your fingers crossed…but no doubt someone else does as this sit is a mine of information as Kay says it has been used for a while for other secondary cancers.
Thanks Kay and wisdens…
Wisdens… can i ask which hospital you are able to have Avastin at? I havent explained me much, but im also quite far down the line in terms of treatment… i.e had e-cmf, Tamoxifen, taxotere, zoladex, arimidex, Herceptin, Xeloda, tykerb… diesase all progresssed with these…
I really want to try and get Avastin but not sure my PCT will fund it so i may have to pay privately for it…
Any help would be appreicated, good luck with your treatment…
Thanks
jakki
xx
Hi jakki
You could look for a trial - I think there are some going on at Mount Vernon in middlesex, Royal Marsden, and Addenbrookes in Cambridge.
There was a thread I contributed to a month or so ago, started by someone else seeking Avastin treatment - don’t know whether you’ve seen it. If not, it might be worth searching the forum for it in case it gave any other info I’ve since forgotten.
Good luck. Kay