I don't know if this helps but I have done both Taxol (every three weeks) and a combination of Taxol and carboplatin (weekly). I found taxol very bearable compared to EC and also the combination of carboplatin and taxol was not too bad, although I had quite some strong side effects during the fourth cycle (diarrhea, low lymphocyte count, nausea, exhaustion, various infections). I am triple negative too and, by the way, I wanted to thank you for all your interesting and thoughtful messages.
Did a quick google and read Cancer Bacup..not my cup of tea anything with a sniff of the alternative..but thanks anyway. That clinic with the name of a peaceful bird is one of those expensive outfits which promisesa lot and may well help some people feel better for having cancer, but I prefer a good old moan!
I'm thinking of a second opinion because I want to be sure that now is the right time for more chemo for me, and also that its the best combo of drugs right now.
Will be in touch!
I was going to email you this information but think it might also be interesting to know if anyone has any knowledge on PDT (Photodynamic Therapy) and SDT (Sonodynamic Therapy) as an alternative to chemo. I found some interesting articles on googling this (presume I'm not allowed to post the link), but a London clinic (relating to a peaceful bird) has further details.
Hope you get some answers soon.
I would be interested in how you get on re the second opinion from the Marsden. I have been toying with this since September. I do have trust in m oncologist but find it worrying that my hormone positive tumour is apparantly resistant to the aromatise inhibitors that I have had so far. I am on my 2nd chemo i
in the space of a year and am alarmed at the possibility of the options that I seem to be through.
Wishing you well
Jane - Professor Ian Smith is the head honcho at the Marsden. I was a private patient of his for a while. Don't know that he has a special interest in triple negs, but he does have an interest in treating people conservatively whilst they are still feeling well and having a good quality of life.
Hi and thanks again Jenny
Well I am having a bit of a celebration along the lines of much better news than expected. Lovely radiologist who said she would always' tell' if asked. She couldn't see anything on my liver or lungs, but needed longer to compare this scan with last one to see how different it is in my chest wall., supraclav area. Will see the consultant next week.
I'm really not sure that carbo/gemzar is the right way forward now. Onc's thinking is to hit it hard now while still well and no further spread but what about later? I have e-mailed Marsden about a private referral for second opinion. Does anyone know anyone there who is partic. interested in triple negatives? Yes I think this combo has been used on er+ and pr+...but think the scanr trial evidence may show more response on er- and pr-
So I'm still not strictly speaking with secondaries..still on that strange 3c/stage 4 border which doesn't feel very safe. Strange ways that cancer behaves. (not to mention my oncologist who gets so touchy feely its as though I'm dead already...)
Hi Jane, I know they give this combo at my hospital on the NHS and I presume under the same circumstances as you mention. My onc said to a friend of mine on prescription of this mix (and you know who you are if you read this) that they were entering 'uncharted waters' I guess meaning that there are not such qualified trial results as for some other chemos. Anyway, I do know of several women on this regime who are doing well and obviously wish the same for you. Also, I am not sure they are either triple neg or her2+ (so hope it is another cocktail in my own pipeline as and when required).
Thanks Jenny. A celebration might be if no spread to my major organs. Downside is that onc is recommending gemzar and carboplatin anyway cause of growth regionally. I feel well right now and its very hard to contemplate more chemo wich will give me the dreaded 'fatigue'. I'm sure I probably will go for the chemo but my big fear is to destroy this well time and never be well again.
Got in panic about something Kate said about craboplatin being off license so checked with my insurance (have AXA PPP) Apparently if onc recommends it then since August they have been paying for it..funny how some news makes you feel excited. I know in my case I would get this combo on NHS in my area but wonder whether this is another postcode lottery drug. (Carboplatn and gemzar is particularly useful for triple negatives and for er-pr-her2+++ where herceptin has failed...I think.)
Would just like to wish you all the very best for your scan and I hope the results will be worthy of celebration.
Do take care,
I found out today that I'll be getting the gem on Day 1, Day 8, and Day 15..this sounds horrible to me. I get awful 'fatigue' on all the chemos I've ever had..at times bad enough to really feel its not worth doing it.
I'm in the really odd (but don't knock it..quite a nice place to be) position of having no symptoms of cancer..apart from a few lumps in my chest wall, and yet I'm rapidly running out of options to treat it. AC down done, taxoter done, vinorilbine done, xeloda done. But I understand they'll start recycling them next...
Don't like Xmas anyway and don't celebrate it much so having a scan gives me a good reason to ignore it even more! I am terrified what the scan will find-got it tomorrow. Last time the radiologist told me she couldn't see anything in major organs so tomorrow if she doesn't say anything I'll be feeling even more terrified. Will get official results when I see onc on 19th.
Really pleased you're getting a good response so quickly Kate.
I had Epirubicin as part of my treatment four and a half years ago and had very few problems. I felt slightly light headed
and a bit spaced out at times for a few days after treatment but, apart from that, I was fine. CMF was not so easy for me but I have heard that a lot of people tolerate it well without too many side effects. I have no idea how these chemos compare to gemzar or carboplatin but hope whatever treatment you have goes well for you and has good results
I've started gem/carbo last thursday and after my first dose I can now swallow normally and the pain in my chest has gone so hoping it won't make me too anaemic as the course goes on. it has far exceeded my expectations on my first dose as far as response goes. The only thing is they won't give me the day 8 gem but you know how much chemo I've had and what my probs are.
From what I understood gem/carbo is not strictly licenced for secondary bc but hospitals do use it, this might be why you are not getting many replies.
They told me that cisplatin also causes renal damage so that is why they prfer to use carboplatin.
Hope the scans go alright - do you really want to be scanned before christmas!!!
Thanks Tina. I'm almost certainly starting this combo in the New Year (unless I decide to stick 2 fingers up to more chemo but I'm far too sensible/cowardly?? to do that).
I had AC rather than E-CMF and have heard bad things about epi so your post doesn't entirely cheer me.....but great you're getting a good response.
very best wishes
I have posted this for new user Tina,
Only just seen this, I don't visit the forums that often.
I am on gemzar/carboplatin and have had a good response so far. I am triple-negative with extensive mets. It is similar in side effects to epirubicin or CMF.
Jane I don't have any knowledge of gemcitabine but I was on cisplatin some years ago so this is really a word of warning. It has a particular side effect which is not always explained to patients. It can cause irreversible damage to hearing. Back when I was on it - this was the cheaper option and only if patients had problems were they switched to carboplatin. Early warning signals are tinitus! I yelled as soon as this started to develop and my hearing was checked. I had started to lose some of the frequencies in one ear and was switched very quickly to carboplatin. Do hope your anxieties about more activity in your chest are unfounded.
as there does not seem to have been response any from this forum why don't you try the US forum, breastcancer.org - with their much higher population that the UK, there must be someone there that has had this combination and can give you some advice.
Medhelp's Ask The Doctor breast site is answered by an experienced breast cancer nurse (and you don't have to pay for that forum, as I do for their gastro forum) from the Cleveland Clinic in Ohio. She doesn't answer at weekends, but I have found her to be very knowledgeable with some of my unusual problems.
Hope someone can come along to help. I never did find anyone who had bc and also Mondor's disease, although I researched and posted extensively.
No experience of these drugs myself but just wanted to say I'm sorry you've got the prospect of another scan and possibly more chemo on the horizon.
You're always such a great help and source of clear info for the rest of us - I really hope there's someone out there who can answer your question and reassure you.
Hi I'm bringing this back to the top cause I'd still like to find someone who has done either carboplatin alone or carboplatin plus gemcitibine(gemzar.) My scan in September showed disaese under control..much had dispapeared so I have continued on xeloda but I am pretty sure there is fresh 'activity' in my chest wall..and am anticipating being scanned again before Xmas.
Dread the thought of more chemo and really want to put it off as long as poss but it would be good if anyone has had these chemos to know how they went. (Cisplatin also suggested instead of carboplatin but I think the side effects are much worse so I'd opt for the carboplatin if it came to it.)
There must be someone who's had this combo???
I am halfway through vinoralbine on its own xeloda didn't work as several others haven't...... I am also interested in your treatment lets hope the scan results are good. Like you I am feeling well at the moment (steroids and pain killers all help)and dont want to comprimise that with heavy chemo but if it works... I am due an update of my treatment plan in about 2wks....... Let us know how you get on
Taxus is the yew tree. I had taxol on a weekly (trial) basis last summer. I found it quite hard going compared to my first chemo of EC. I found it tiring, my white blood counts would regularly drop and toward the end of the course, I picked up a very rare and dangerous infection as a result. I think low bloods are the thing to keep an eye on. I have to say, I think (personal opinion only) that the taxanes are the meanest of chemos but they can be very effective. In my case they kept me stable for a relatively short space of time. I know of others who have not suffered so badly on this chemo. As with all these treatments, there is no guessing how individuals will respond. What a b****y lottery! The platinum based chemos are supposedly extremely effective for triple negs.
Best of luck with your decision.
taxol and taxotere come from the same type of group ( I believe it is from a yew tree!!!)but taxotere and taxol are different drugs so you can be offered both types at different times.
Has anyone done this combination and if so how were the side effects?
I'm just coming to the end of vinorilbine plus xeloda for chest wall/supraclavicular recurrence. Being scanned soon but from clinical response looks like partial response only so it will soon be time to discuss next options.
I am wary of doing more heavy chemos while I'm still feeling well so not much keen on idea of anything other than contining xeloda for a while (one of the options).
Taxol is another possibility.Done taxotere and hated it...anyone done the second taxane?