Hi I’m a new member having recently been diagnosed with grade 3 triple negative breast cancer. I’ve just had 2nd cycle of Docataxel together with Avastin (trial drug) and wondered if anyone else was on this trial. I had a terrible time after my first cycle ending up being hospitalised with neutropaenia. My dose was reduced by 10% this time round and my oncologist has added G-CSF injections which are helping. My side effects are much less than they were but I still find it very frustrating to be so fatigued.
I would love to hear from anyone else interested in this trial?
Sharon x
I’m also on the Avastin trial and am almost at the end now, with just one FEC to go - yipee! I too had to be hospitalised after the first Tax (as we call it) due to neutropenia as I had an infection before starting chemo. Had to take injections too for the first two then had a lower dose and no injections for the 3rd Tax. It is pretty hellish the first one, I think your body gets such a shock, I was totally out of it for the first two weeks. But, the second one was not so bad and by the third, I was starting to worry about finishing and moving to FEC! The worst for me was the throat and mouth ulcers (used Difflam mouthwash even in middle of night!) but these cleared when I moved onto FEC. I had crusty blood in nose (put vaseline in), pains along bones and joints, weak and wobbly ankles and wrists, awful taste in mouth, skin started to get dry (lashed on moisturiser), as did eyes (got conditioning drops). Also got a bit down and tearful sometimes, feeling that I’d lost the life I knew (put on hold soon to be resumed!). Very tired and lethargic but I went out for walks every day and this cleared the fuzziness in head and made me feel more energetic. I didn’t lose my hair but it did thin a bit. Friends said I looked really good and the steroids gave me a round face and got rid of my wrinkles! Mainly, my tumor shrank from 4 cm to 3.5 cm and the node lumps disappeared altogether. It has not shrunk any more but we are hoping the tumour is mainly dead tissue. It has certainly been stopped it in its tracks. I almost wish I had another dose to blast the tumour down a bit more. Now I am into my 2nd FEC and this is much easier to handle, only sick the evening of chemo, less steroids (4 per day over 3 days) anti sickness tablets for first 2 -3 days and no injections. All has gone well and I was up and out and about on 2nd day of 2nd FEC. More like back to normal but quite tired sometimes. Tend to forget and overdo it a bit. Yes, and my hair has almost all gone, looking like Scrooge these days! Eyebrows and lashes still in place. My team were saying maybe starting with Tax is better than FEC because it is the hardest to bear, but, it will do its job and attack that tumour. Bear with it, I found by day 12 I came round again and was able to go out and do things/see people. Where do you live? I’m in London. There’s a whole lot of great info about Tax on these pages and a thread dedicated to it called something like ‘Need positive posts about Tax’. You will see you are not alone in your suffering. Bella x
Hi bella
I certainly don’t feel as pathetic as I was feeling now I’ve read your post. Today is a great day for me. I woke up feeling less fuzzy headed today and with more energy than I’ve had for a long time. Even went on an outing to do some retail therapy which felt great.
My mouth ulcers have been less this time but they do get me down and im using Difflam and Oraldene mouth washes. I’ve also got biodene gel which is helpful at night as I’m a mouth breather when I sleep (particularly as I too have got a crusty bloody nose most of the time). The gel keeps yr mouth moist.
The worst thing to bear is definitely the joint pains for me, and my teeth feel like they are falling out along with my finger and toe nails! I had my last GCSF injection yesterday for this course but apparently I’m going to have these after every cycle. My last TAX Is on 5th december and then I move onto FEC. It’s nice to know that the side effects of FEC will be different and all being well far more manageable. My hair has completely gone but I too still have eyelashes and brows although they are getting thinner. I was glad to loose my moustache though LOL!!
I live in Staffordshire and am very happy with the chemo team. However, it’s just so nice to be in touch with somebody who is on the same regime and experiencing the same side effects. I have felt pathetic on occasion and wondered if I should be more assertive with myself and be making myself do things even when I haven’t felt like it.
I like your idea of going out for a walk every day and will resolve to do this, especially as my little doggie loves walkies and doesn’t care how many times he goes out! I’m impressed that your tumour has shrunk - quite a big size still, if you don’t mind me saying. Mine is only 2.3cms. However it has shrunk clinically, just waiting to see how it looks on ultrasound after chemo.
Do you get indigestion/acid reflux at all? It’s not there all the time but when I get it, it lasts for ages despite gaviscon.I’ve also been getting a lot of pain over where my tumour is. Are you due to have surgery once your chemo is finished? Or are they planning radiotherapy first?
Thanks so much for replying. Youve made me feel ‘normal’ ish. Not that my friends would say I’m ever normal! I wish you all the very best with your treatment and recovery xxxx
Thanks again
Luv Sharon x
Glad to be of reassurance, these threads also did the same for me, just knowing that someone else had a bloody crusty nose etc make me less panicky.
Yes, I forgot my gums hurt and teeth felt like they’d drop out, had mad twitches in my left eye, yes and pain in breast where tumour is (I think it was shrinking). It is a large lump indeed, just wish I had gone to Dr sooner, when I felt the little bean sized lump. Thought it was a cyst and would go away, never expected to get Breast Cancer. Hope your lump shrinks away to nothing. As for me, I’ll have an op in January, it will be Mx and not lumpectomy I think. It’s just too big. I don’t mind though, as long as it is taken out. After op I’ll have radiotherapy. Just can’t wait to finish chemo. Went for a meal at Carluccio’s tonight and couldn’t have the vongole or seafood linguini, or glass of wine. I’ll wait till 3 weeks after last chemo before going for those!
The ravioli was gorgeous, again I couldn’t enjoy food at all on Tax. I ate though, to get the nutients in - loads of veg and spices/herbs/garlic, one atlantic mackerel a week, lamb, beef and chicken but tried to do organic as much as possible. I too had terrible indigestion and acid. Went through a bottle of gaviscon then my GP wrote a prescription for Pepti something, which is much stronger and nails it! Don’t need it so much now on FEC.
My nails have been ok but this week I developed an ominous looking bubble under a couple of nails so I think they’re starting to lift from the bed. Realised I had my hands in water too much washing veg and copious hand washing after everything so now I wear my rubber gloves for absolutely anything wet (including going to the loo!). Hope I can hang on to them for a month more.
Good luck too with your last tax and fecs. It will be over before you know it - can’t believe I’ve got here already!
M1yu - interesting to hear avastin is used as a treatment and not just as a trial drug. It stops tumours from developing their own blood supply I believe. I am hoping this will help prevent mets developing elsewhere later on.
Hope you and everyone on the forum has a peaceful positive weekend.
Love Bella x
BTW Sharon, meant to mention in my huge message, my boyfriend is looking after our two dogs (the youngest pup is a 6 month old Staffy and too energetic for me, the other a 2 yr old Staffy) I’d meet them in a park and it certainly helped me recover. Just being with them made me so much happier and stronger, even though I often just sat on a bench watching them. I also think being amongst the trees getting fresh air was very beneficial!
Hi both, I’m actually having a really good few days and I’ve still got a week to go before my next cycle, so am hoping to make the most of this week! Bella you made me laugh about the eye twitch - my left eye is twitching too but I had put it down to perhaps being a bit tired!
I’ve been to the hospital today and had a half hour aromatherapy session which was lovely, especially having my bald head massaged, I didn’t want to leave! It made a change going to the hospital for something positive.
I hadn’t realised that you could opt to have Avastin without fitting the criteria for the trial. Clearly having private medical insurance is helpful. Having read Bella’s post, are the side effects the same?
Hope your nails settle down Bella. Mine are troubling me as they feel so tender but you are right what you say about having your hands in water all the time! I do try and wear rubber gloves where I can. My toe nails and the ends of my toes are the same so wearing particular shoes are a no no which I realised on Friday when I got glammed up for a Christmas ball only to change my whole outfit because my shoes were just too uncomfortable. Lol
You have to laugh don’t you!
I totally get what you say about your staffies, just having my dog around is so therapeutic even though we haven’t been able to go on long walks together. However, he’s been banned from sitting with me on the furniture and having cuddles on my bed, for obvious reasons.bless him.
Do you have a date for your mastectomy? I see it as another phase in your treatment and journey to recovery, although its yet another hurdle to jump. I wish you well xxx
Have a great week both xx
Sharon
Hi,
this is my first post, and I’m pretty anxious. At the end of October I was diagnosed with lobular breast cancer which had metastasised into my lymph node/s. The primary didn’t show up on mammograms, nor on ultrasound. I had found a lump in my armpit.
It was when the lump was biopsied by the radiologist during the ultrasound that the bc was diagnosed, ER pos.
An MRI scan showed the primary to be around 2.5 - 2.8mm across.
I’m due to have chemo, (3xFEC and 3xDoxy … though maybe not in that order) starting on Thursday 8th Dec, followed by surgery. That will be a complete lymph node clearance and either lump or mastectomy, depending on possible shrinkage.
I’ve been offered to go on a trial for Avastin as I’m HER negative.
When this was offered I was really pleased, but have since looked it up on the internet and read the posts on here … and I’m wondering.
What do you think? I’d be grateful for any of your thoughts. I could still withdraw from the trial.
Mostly I think ‘Yeah, bring it on - let’s deal with this’ but … at this time of the morning it doesn’t seem so clear.
Thank you, thank you in advance for your views, and warm hugs to all of you,
fx
Hi… may I add a comment about docetaxol and dose reduction. I don’t know much about Avastin, but…
… I did take part in a clinical trial “THYME”, for women with secondary bc, for which I had Taxol (paclitaxel) plus the drug they were testing (or placebo?). The dose level of Taxol that I was given was 10% above what my hospital would have given me as standard treatment… I had severe side effects. I wasn’t told about the increased dose until I had signed up for the trial.
That said, I am in favour of clinical trials generally. I have done well on treatments that are now standard - letrozole and subsequently capecitabine - because somebody was willing to take part in clinical trials for these drugs.
Hi,
When I was invited to join the Avastin trial my Oncy said it didn’t seem worth it, but I read up on it and changed my mind about three times before settling to go through with it in the end!
I am ER/PR + and have just finished chemo same as your plan. My surgery will take place early Jan and will depend on the results of the scans (just had them) so not sure if it will be lumpectomy or mastectomy as yet.
I decided to go for it in case it turns out to be a wonder drug, having read about it inhibiting the tumor’s blood supply process, maybe, I thought, it would prevent any stray cells from growing into tumours as mine had matestised to my lymph nodes. The chemo shrunk my lymph tumours and the biggie shrunk by at least .5 cm (mine was 4 cm now down to around 3 - 3.5 cm). I noticed after I finished the Bez drug used (sorry can’t remember it’s name now) two chemo sessions ago - I had 3 tax with 3 bez then 1 fec 1 bez then 2 fec on their own so 4 bez in total - I was a lot less whacked by the chemo and the fec on its own was quite a breeze. Hopefully it has helped kill it off! I’ll be discussing it with my team in two week’s time.
Hi Coxy, I hope you are doing ok with the tax, sorry I haven’t been in touch, been busy getting thru the last chemo session last Friday. Getting back to the surface again!
Love and hugs to you all. xxxx Bella
