hello Jane, actually is Myocet which is like pegylated doxorubicin, while Eribulin is a synthetic compound that works a little bit like the taxanes, inhibiting microtubuli formation in the cells. I have known a few women in the hospital who were on Eribulin for more than one year with no progression, so I was quite happy when I was offered the same drug, but again, they were not triple negative. Still my doctors told me it was quite a succesfull drug, there we go!
the reason why in my hospital there are many clinical trials is because the big boss is big star in oncology known worldwide, who does a lot of basic research as well as clinical research. I am glad to try new drugs, but I would be much happier if something worked, what a silly thing to say.
for some reasons, I cannot believe it’s me who is in this situation, my mother died of cancer 6 months before I was diagnosed, and I was 37, so for me everything is still a big blur.
don’t give up Jane (again, what a silly thing to say!, but I mean it!) and let’s keep in touch, let’s see if you are lucky to find something that works for us.
Yes I looked them both up and then posted about them the wrong way round.
Have never heard of erubilin being used in UK but taxol wasn’t working for me so this probably wouldn’t.
I feel quite reticent about posting about my nearly there decision probably not to pursue further treatment if/when vinorilbine fails for me. I think there is a culture that ‘fighting’ involves trying drug after drug after drug, even when the returns get more and more minimal.
I don’t see the position I may be in as ‘giing up’…I see it as one possible rational response to the reality of the place my cancer and me are at.
I would not refuse treatments which had a reasonable chance of working for a resonable amount of time…nor am I the kind of person who’'s going to be off pursuing mistletoe, essiac and the like…but sometimes I think for ourselves saying ‘that’s it’ for treatment (given the state of medical knowledge right now) is the right route to take. But its not giving up. We each make different choices, on the basis of the lives we have lived. I’m a lot older than you, nearly 60, and I think that makes a difference. This is one crap disease.
Lets scream for more attention for the triple negatives who will follow us.
Jane, I just wanted to tell you that Eribulin and Taxol are as different as taxol and Taxotere, that is to say that about 20% of cancers resistant to taxol or taxotere are sensitive to Eribulin. About Myocet, the advantage compared to doxy alone is that, being incapsulated in liposomes, can be used at much higher doses, so dipending on the dose of doxy you used before, it can work. for me it didn’t but this does not mean anything. By the way, I am using mistletoe in the last two weeks :).
I agree, this is such a crap disease!
So sorry to read your post about recurrence so soon -,especially after original clear lymph nodes. I always remember your post which said " I feel I may be someone who will not do well out of this" - but hells bells you don’t expect it again so quickly. I don’t really have anything wonderful or clever to say to you, except that I really feel for you and I’m sure you will get your head around this once you know the treatment etc. Thinking of you…
Thought what you’ve said doesn’t change my basic position. Not sure erubilin available in UK and have deffo decided against pegylated whatsit…who knows may chnge my mind but just feel for me right now I’ve done all the chemo options i want to…am going to see how vinorilibine goes…when I got second opinion at Marsden I was recommended taxol (cause taxotere may have worked well for me after primary 2.5 years NED…but may just have been the surgery and rads!) and return to vinorilbine…and then talk about Parp inhibitor Phase 1 trial. I will go for that talk!
Thank you for your reply - thought I was invisible there for a mo!! God I dont even remember posting that title - must be going mad!! But it is true, I have tried to fight this with all I have, and will continue to do so, but sometimes these gut feelings just prove to be true - what can I say. I wish it was not but it is.
Had bone scan today and big long talk with bc nurse. Am just so scared for future. Have ct scan tomorrow.
Looks like surgery is on 20th Dec (its a sat). Not bothered that its just before xmas cos I just want this out. I am also going to have preventative mast on other side at same time - which I was going to have when I had recon done but obviously that is now delayed well into next year.
Thanking you again for your kindness.
Speak to you later
Love
S
xxx
You’re not going mad - it wasn’t a title you posted, just something you wrote in one of the other threads, but somehow it just stuck with me. Will be thinking of you for your scan tomorrow.
I meant were they able to operate on the tumour in your chest wall? I have extensive tumours in my neck and chest wall and have always been told inoperable (which I accept) because there are so many areas and they are wrapped round muscle, as well as being in nodes. (my biology s not good…just know can feel lots of lumps, bumps and swollen areas.) I think surgery is possible on a single site.
I dont have op till 20th (hopefully), but yes, they are operating to remove it - unless ct scan shows up that it attached to more than they think. Have ct tomorrow so results next week sometime.
Thank you. Its something I felt deep down since I was dx but did not voice it until a few months ago. That does not mean that I was going about all doom and gloom about it, cos I have sooooooooooooooooo made plans for things next year - it was just a feeling I had, but it was not going to stop me making plans. Just need to get over this next ‘wee’ hurdle!!! and start again
Well yesterday I had my second carboplatin, this time through my port, all nice and easy However, have been dealt a serious blow in that my CT scans have shown that the disease has progressed already, despite having been clear 6 weeks back and 1 chemo administered. I now have signs in my nodes on both sides of my collar bone, and the one that leads to them from the primary site and removed axillary lymph nodes. This is what is pressing on my throat. I am devastated.
I guess I liked to think that I would get through this recurrance just like I got through the primary and would be ‘cured’ especially when it was identified as a local reccurance, sadly my team say that is now not the case and all we can hope for is control. I don’t want to die, but then who of us does.
This seems scarily aggreessive to me, to have come on so quick and I am also doubting the single therapy of carbo, they say if we dont get some control from the dose just given then they will add gemcitobine. I guess it’s all just wait and see now.
Hi Jane and all the others,
I just wanted to say that, even if I know this is the most unconfortable and difficult thing to do, if any of you want to explore the possibility to have some of the experimental treatments I mentioned (I know in the UK there are excellent doctors and excellent treatments, I lived there for nearly 6 years, but sometimes somebody might need a totally different view about things and a bit of fresh air), I can ask my doctors, organise an appointment and you can stay at our house without any problem.
I am saying this because sometimes I check experimental treatments in hospitals in other country, and I wish I could go there and get as much information as possible, but I don’t know how to do it.
so just in case I can be of any help to anybody, please use me!
Thanks for the offer…its very generous but no travelling abroad for treatment does not fit my philosophy of how I am going to manage the last part of my life.
Really sorry to hear about your spread…I know how scary it is and I also know how hard it its to get information about regional recurrences. All the literature talks about the possibility of ‘cure’ whereas in fact some regional recurrences are not curable…this was a shock to me when I was first rediagnosed and I still think there so little information about our kind of recurrence. I can imagine how scary the pressure on your throat must feel. My neck tumours, as I’ve mentioned before have damaged both my vocal chords and therefore my voice, and also my left eye, now droopy (but not too noticeable as I wear glasses…of how we clutch at small things as compensation) I’m terrified of tumours growing round my throat and choking me…
There are differnet schools of thought about single agent or double agent chemotherapy…doing it singly stretches out the options longer, and combining chemos may give slightly better repsonse but not aways.
I have six cycles of carboplatin with gemcitibine, but found the gem very hard on my bloods and ended up cutting some of the doses. (The gemcitibine part was given on Day 1 and Day 8 but after 2 Day 8s, I just had it day 1.)
My cancer remained stable while I was on this combo but grew rapidly as soon as I came off it. Hope you have a better response.
It is all so scary and unpredictable and all we can do is wait and see and hope…
Hi Jane, thank you as always for your reply and support. Yes the pressure part on my throat is horrible, on the other hand when (if) it eases at least I will know the carb is making a difference. I can totally understand your fears with the neck tumours, it’s so scary to think what our own bodies can do to us, I do hope it doesn’t happen for you. I was going to ask my onc team why these nodes cannot be removed? Maybe there is a reason but surely if they are ‘infected’ with cancer cells taking them out of the system will remove those cells at the same time. I guess I don’t know enough about lymph spread and can’t find much info on it yet.
Must try harder!!
I don’t think deep down I ever thought I was going to be ‘cured’ from this reccurance, but I hoped at least for many more years without it coming back. The for such a quick spread to occur, post a clear scan and a chemo, it makes me very frightened that I wont even have a couple of years left to me now. My wonderful partner and I have talked and discussed what the future holds for me, we know the inevitible is there now, but not when it will come. In the meantime I will continue trying to keep it at bay with all that is available to me and pray that this drug works so so well for me that it can stop it in it’s tracks and give me some more time.
Funny, I have already moved my mindset from cure to simply more time, our minds cope in strange ways don’t they.
Thinking of you Jane as you make your own way through this, I hope for something for all of us triple negs, sadly will be too late for many. You mentioned about making a big noise, raising the profile, how can we go about that do you think. Write to the research companies, the TV, what… I would be more than happy to kick up a stink for all of our sakes.
I’ve heard that a paper will be presented at the San Antonio cancer conference on Friday about a Phase 1 trial of PARP inhibitors for triple negative breast cancer.
Thanks Jane, I was reading on a site the other day about a trial that began about a year ago with PARP inhibitors by BiPar Sciences at Phase 2 as well. Maybe something will be mentioned about this also at the symposium, I think I signed up to a newsletter somewhen, if I get anything I will share.
I thought I had posted on this thread alreadyt.Jane pointed out it is for people with secondaries I am sorry to intrude and have deleted post as far as possible.Love Vx
However, have been dealt a serious blow in that my CT scans have shown that the disease has progressed already, despite having been clear 6 weeks back and 1 chemo administered. I now have signs in my nodes on both sides of my collar bone, and the one that leads to them from the primary site and removed axillary lymph nodes. This is what is pressing on my throat. I am devastated.