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Need help! Feeling down! Capecitabine? Taxol? Or clinical trial taxol plus azd5363 (beech study)?

16 REPLIES 16
Louis
Member

Re: Need help! Feeling down! Capecitabine? Taxol? Or clinical trial taxol plus azd5363 (beech study)

Dear KATE2010.
I am now facing similar decisions to you faced last year? Please read my posts and let me know how you are doing.
Thinking about you.
Debra. xx
Bevlaar
Member

Re: Need help! Feeling down! Capecitabine? Taxol? Or clinical trial taxol plus azd5363 (beech study)

Desi...I'm having reflexology and reiki as part of my treatment and found it excellent as a way of relaxation. I have it every 3 weeks and look forward to going to a "nice" appointment instead of scans, bloods tests,  results etc,!

bev xxxxxx

Desi-2
Member

Re: Need help! Feeling down! Capecitabine? Taxol? Or clinical trial taxol plus azd5363 (beech study)

Kate I don't know anyone that has had success with alternative treatments or dietary changes and I desperately wanted to find something as prior to this diagnosis I was very anti drugs of any kind even a paracetamol. I have just been referred for some complimentary therapy through my local hospice and I'm hoping this may help replace the anti depressants. I'm thinking of trying either reflexology or acupuncture. I'll let you know if it helps. Xx
carolsav
Member

Re: Need help! Feeling down! Capecitabine? Taxol? Or clinical trial taxol plus azd5363 (beech study)

Hi kate. I am also new here after a 10 year gap from my oruginal bc. I am only on letrozole and denosumab injections plus pain relief but 10 yrs ago i was offered a clinical chemo trial. I didnt know wot to do but was advised to ask onc wot he wud say if their daughter or wife was in this position. My onc immediately said advice wud be to do trial which i did. Its so hard to make these decisions when your head is all over the place. Good luck with everything.
Carol x
stresshead
Member

Re: Need help! Feeling down! Capecitabine? Taxol? Or clinical trial taxol plus azd5363 (beech study)

Kate, i'm also relatively new to this forum but know exactly what you're going through. I don't know if I can be of much help other than to let you know you are not alone. I was first diagnosed with lobular BC grade 3 in 2011..i had 'the works'....fec chemo, bi lateral mastectomy, diep reconstruction,axillary clearance, radiotherapy and then arimidex and aromasin. After all that ,got skin mets diagnosed in July 2014 after being told for 5 months it was a sebaceous cyst. Now on toxotere and capecitebine. Due for 4th cycle this week. After chemo I am 'out of it ' for a week..feel really poorly. Lost my hair for a second time. Cape side sffects aren't too bad at moment apart from nausea and doahorea. Worst things are fatigue and no energy. Have been told I can have 6 cycles of tax/cape ten another 4 of cape. After that all seems a bit of a mystery other than if it has worked, start on letrozole and be closely monitored. having read posts on here thought I may be on cape for the foreseeable but apparently not. Its all very scary isn't it? I have had a second opinion and the general concencus is 'cross each bridge when you come to it'. easy to say but not so easy to live by!! Good luck with whichever road you decide to take. Best wishes.
mrsblue
Member

Re: Need help! Feeling down! Capecitabine? Taxol? Or clinical trial taxol plus azd5363 (beech study)

"what comes after capecitabine"?  Well... for me, cape was my chemo wonder-drug  (I also had letrozole as my first treatment after bc/bone mets dx, worked for almost 3 years).  Sadly Taxol (paclitaxel) didn't work for me. 

Cape kept me stable for 2 years, then I asked oncs if I could have a break because of hand/foot SEs. I had eribulin last year (IV chemo, 7 cycles, I was one of the unlucky ones who lost my hair)  then other hormonals and now I'm back on cape again, significant improvement in liver function blood results (I have liver mets too) so the cape is working again!

bertie1
Member

Re: Need help! Feeling down! Capecitabine? Taxol? Or clinical trial taxol plus azd5363 (beech study)

Hi Kate so sorry to hear of your recent diagnosis don't know how much help I can be but I'll try my best .I was diagnosed with primary 15 years ago had mastectomy no other treatment as cancer was grade 1 and told not likely to recur.Then 3 years ago had recurrence in lymph nodes so had axillary clearance followed by Fec ,chemo ,radiation then put on letrozole as it was oestrogen positive.Was fine till March this year when some chest nodes were enlarged so was put on clinical trial of exemestanehormone therapy and saracatinib the trial drug but didn't know whether I was on the trial drug or the placebo.Not long after starting this trial had back pain and a scan showed progression to spine and ribs,however continued with trial and onc added in denosumab for bones.Then on 12 week scan on the trial they found mets to my liver so I was taken off and put on Capecitibine chemo tablets and have just finished my second cycle so don't know how it's responding yet.Just to say before I was put on the trial the onc explained to me that she would know at the 12week scan if it was working and if not then her next step would be chemo,and when you are on atrial you are scanned more frequently to see if it's working and in my case it didn't but if you look on the other side if I hadn't been on the trial then these mets might not have been picked up until my next scan which was being done yearly.Hope this information is of some help to you.
Love
Kaye xx
Stillhere
Member

Re: Need help! Feeling down! Capecitabine? Taxol? Or clinical trial taxol plus azd5363 (beech study)

Hi Kate, welcome to the group and I hope you find lots of support here. Re your chemo options, I'm no expert but you should be given more information before being asked to make a decision, especially the clinical trial. If you put azd5363 into google, CRUK has details of the trial which might help. You can ask for a second opinion at somewhere like the Marsden as well. What does your Onc recommend? I think that if a trial is in phase 1 it is quite new, but ask about how tried and tested it is and what result they have had so far. Hope this helps a little xx
nicky08
Community Champion

Re: Need help! Feeling down! Capecitabine? Taxol? Or clinical trial taxol plus azd5363 (beech study)

Hi Kate
My primary BC in 2003 and subsequent local recurrence in 2008, which is when bone mets were also found, was hormone positive, HER negative. Hormone treatment did work well for me although I don't know whether tamoxifen did that much, it could have been the zoladex I was on after my primary. In 2013 I was diagnosed with liver lesions as well as having further progression in the bones. I requested a liver biopsy as I know that receptor status can change and I'm glad I did as I am now HER+ which would have meant that had I switched to another hormone treatment it wouldn't have been effective. I started on Capecitabine (before the liver biopsy) and this kept things stable, or shrinking in fact, until earlier this year when a small new liver lesion showed up on one of my routine CT scans. I have now moved onto Taxotere, Herceptin and Perjeta and feel is is the right move for me as with any luck it will deal with the liver mets as they are all quite tiny, and then have follow on treatment with the HER+ drugs as well as adding a different aromatise inhibitor. Going the chemo route is not what we want but it can really deal with things either slowly, as in Capecitabine, or more aggressively as in Taxotere (as I'm finding out!) I found the 18 months I was on Capecitabine very doable once I got over initial dosage tweaks and my body get used to it and it bought me a huge amount of time to sort out some heart problems I had had since FEC in 2008, which is why I didn't go onto the IV chemo last year.
Good luck and do ask anymore questions.
Nicky x

belinda
Member

Re: Need help! Feeling down! Capecitabine? Taxol? Or clinical trial taxol plus azd5363 (beech study)

Hi again Kate, I haven't heard of the Beech study. After Cap I had Doxorubicin. After Dox I was then put back onto Arimidex as 5 years or so had passed since it had stopped working for me and it actually kicked in and worked well for a year. I think it has probably stopped working now or is waning, I find out next week.
X
kate2010
Member

Re: Need help! Feeling down! Capecitabine? Taxol? Or clinical trial taxol plus azd5363 (beech study)

Thanks Tracey, your words are lots of help in deed, I thank you for replying, you are right it's just life taking a slightly different path, I have coped with so much so far, I get knocked down an always seem to get back up again. I worry because I got mets just 12 months after the original chemo whilst on tamoxifen. Letrozole did work apparently but only really for 12 - 15 months and then faslodex not at all. I thought I would be put on more hormone drugs but they have just sent me down chemo route. I know what you say about no sleep, it's the worst thing ever. Do you do any alternative / diet methods, people keep going on about cannabis oils, diet etc? In fact does anyone you know? Cape sounds abit more doable but then on the other hand should I be doing trial as you would expect this to be an improved drug or maybe not??? Decisions decisions!!! Xxxxxx
kate2010
Member

Re: Need help! Feeling down! Capecitabine? Taxol? Or clinical trial taxol plus azd5363 (beech study)

Thanks belinda, gives me great insight, are you on hormone therapy now? What came after cape? Xxx looks like I gonna be a regular on here now :-). Have you heard of anyone who has took part in the beech study? Apparently I won't be offered this trial again if I go with cape or taxol, and even if I go with the trial I have only a 50% chance of getting the drug (can't just get my head round the sense of that but hey ho) xxx
Desi-2
Member

Re: Need help! Feeling down! Capecitabine? Taxol? Or clinical trial taxol plus azd5363 (beech study)

Hi Kate so your you find yourself in this situation I'm not sure how much help I can be as I'm triple negative so hormone therapy is not an option for me but it's a huge plus for you that you are. There are many ladies that are still here many years on with hormone therapy. It's only natural to feel the way you do and although this may sound very cliche you will cope life just takes on a different kind of normal. There are many treatments out there and my oncologist has told me after recent spread it's not the number of mets you have but how you respond to treatment that counts. Took me a while to get my head round this. I'm only just started on chemo so don't have a huge amount of experience but from what I've read of others the cape tablet form you mention is kind as regards side effects. I wasn't given an option it was IV Fec as in their opinion it is wise to hit it hard whilst you are relatively strong to cope with it and leave kinder options for another time. Not everyone wants to do this tho and if you have an option it is a personal preference. If your not sleeping also don't be afraid to ask for help from your GP I found when my sleep was poor I couldn't make a decision about anything at all. I needed a strong GP to take charge.
Wishing you all the best with whatever you decide to do.
Tracy xxx
belinda
Member

Re: Need help! Feeling down! Capecitabine? Taxol? Or clinical trial taxol plus azd5363 (beech study)

Hi Kate, my Onc didn't even think Faslodex was worth trying on me, Aromasin never worked at all but I was lucky to get a good response from Arimidex. My first chemo was Capecitabine, like you I was given some choices. I chose Cap as a friend had nine years with it, liver and bone mets. I managed 4 and a half years and it's not so harsh, for some of us, as the IV chemo's. Not really important I know but you keep your hair too.
Good Luck, whichever path you choose I hope you get some good results. X
kate2010
Member

Re: Need help! Feeling down! Capecitabine? Taxol? Or clinical trial taxol plus azd5363 (beech study)

Thanks Sam, I will give them a call. I know it's a good thing but I feel absolutely fine, the docs just keep telling me different :-(. I will give them a call. I am new to this forum. I have browsed it in the past and do get inspired by it all but thought I now needed people in my situation to help me along. I find oncologists very matter of fact and just feel like another number most of the time. I struggle to make decisions on simple things in life like what what colour of new sofa or tv to buy so god help me with this one :-(. My family and friends are great just missing you ladies I think xxxxx
Sam_BCC
Member

Re: Need help! Feeling down! Capecitabine? Taxol? Or clinical trial taxol plus azd5363 (beech study)

Hi Kate2010

 

It sounds like you're having a pretty tough time at the moment.  I'm sure some of the other users will be a long soon to offer your their experiences and knowledge.  In the meantime you might find it helpful to talk things through with a member of staff on the BCC helpline.  Here you share your thoughts and concerns with someone who will offer you a listening ear as well as emotional support and practial information.  The number to call is 0808 800 6000 and lines are open today 10 to 2pm and weekdays 9 to 5pm.

 

Best wishes Sam, BCC Facilitator    

kate2010
Member

Need help! Feeling down! Capecitabine? Taxol? Or clinical trial taxol plus azd5363 (beech study)?

Hi I am 36 years old living in Manchester. I live with my partner of 7yrs and 4 year old daughter. I was diagnosed in 0ctober 2010 with a 4.5cm, hormone receptor positive, and spread to lymph nodes. Had mastectomy, 6 rounds of chemo and 15 radiotherapy sessions. In July 2012 started getting a really bad back following riding horses, November 2012, diagnosed with lesions on sternum and l5. Had radiotherapy then put on hormone treatment and bisphosphonate (zoladex and letrozole), February 2013 was told there were also small lesions on liver. I have 3 monthly scans and all was ok until June 2014 when told that I had progression in liver. Changed letrozole to faslodex but 3 months on oncologist telling me that the lesion in liver has grown from 1cm to 2.5cm with other smaller areas and potential small nodules on lungs which are likely to be the disease. No biopsy yet on liver, just the bones. September 2014 now been given 3 treatment options (chemo) - capecitabine or taxol or a clinical trial which is taxol and azd5363. My head is up my bum as I need advice and feel like it's the end for me 😞 My family need me xxxxx. The worst thing is I feel ok bar the pain, oncologists just keep giving me bad news 😞