Just stated Paclitaxel - anybody else on this?

I’ve dipped in and out of this forum over the years and read with interest, the uplifting stories. These stories give people living with secondary breast cancer real hope! I’ve never actually posted, but I’ve just started on Paclitaxel, so here goes!

Diagnosed initially in July 2013 with weak ER+  breast cancer in right breast. Grade 3. Sentinel lymph nodes clear!! Lumpectomy, chemo, radiotherapy and tamoxifen. Went on my merry way until…

Oct 2017 -recurrence in right arm pit. Full lymph node clearance and 6 x Docetaxel chemo. ER+ confirmed. Letrozole. CT scans clear. Went on my merry way again.

January 2019 - I found a small lump near my right clavicle. Biopsied lymph node and confirmed that it hadn’t gone away! Still ER+. Evidence in further lymph nodes. CT scan clear. Did not start chemo straight away, as Consultant felt that Fulvestrant and Abemaciclib was the best course of action initially. CT scan in August 2019 showed 2 small nodules in lung, but they weren’t concerned. 
Further CT scan in February 2020 showed  enlarged lymph node on aortic arch, no increase in nodules in lungs. 
So was plodding along until delayed CT scan in August 2020 showed some more enlarged lymph nodes in my abdomen, nodules still knocking about in my lungs and and a 2cm lesion in my liver. I knew something was wrong as I had a further enlarged lymph node near my left clavicle. Since that date in August, I have felt sick to the core! They’ve said they’ve going to hit them all now with Paclitaxel, but I am worrying that they’ve left it to late! I am a positive person who reads your stories with interest (especially Nicky08), but this has well and truely knocked the stuffing out of me. We have a 9 year old Daughter and I need to be around for a while for her.

I am waiting to enrol on the PBCP at Addenbrooke’s Hospital, Cambridge, for anyone who wants to have a look. It’s a joint Cancer Research study looking at Genome Sequencing. I have asked my Consultant  to refer me to them, as they have said if I have a sample which they can biopsy, then I can enrol. You never know, it might throw something up! I emailed them direct, as I’ve googled all kinds during the nights when I can’t sleep! 
I had my first weekly Paclitaxel yesterday and so far so good, I don’t feel rotten! The steroids are keeping me awake though and have been since 3am! I am scheduled to have 24 weekly sessions, which seems a lot, but put into context, I suppose it would be 8 x 3 weekly cycles, if it was done that way! 
I would be interested to see if anybody has had/ is on Paclitaxel and how they found it? It’s early days for me and I am expecting some side effects. I’ve also come onto this forum, as I know we’re all in the same boat and support is essential! I have plenty of support at home and beyond, but can’t share my deepest thoughts with loved ones, for fear of upsetting them xxx

Hi helenahen

Sorry to have you join us on the secondary part of the forum - and thanks for the mention in your post, I’m glad I’ve been of help! There is a current thread on the Treatments and Medical Issues part (in the secondaries section) called Paclitaxel Buddies which you may want to join in on. You can always copy and paste your post from here if you are tech savvy! Saves you typing it all again. 
If you are able I would get a biopsy done and take part in the research. Although the drugs may not be available yet there could be something in the future, or that is already in the trial stage, that could be used further along the line. Starting on chemo (paclitaxel) at this stage is quite appropriate as several other treatments haven’t got rid of the nugget little lymph nodules, chemo will hopefully knock them right back and you can then be on a hormone treatment to keep them that way. Or that’s what’s worked with me in the past.

Good luck with the treatment and taking the steroids, they are such a pain regarding not sleeping but obviously help a lot with the side effects from the chemo. A necessary evil.

Nicky x 

Hi Helen, 

I’ve just finished Paxlitaxel so can’t be much help.

Please PM me if you need and I can talk you through possible side effects/what happened to me?

All best, 

Angel Eyes x