I first posted on ‘younger women’, but have been advised to post here for better understanding and info.
I was diagnosed bc nov06, all the usual treatment till secondary liver and lung diagnosis dec07.
I think what Im asking for are your successful experiences with which drugs/treatments for these kind of secondaries. Im currently on gem/taxol and Ive insisted staying on Zoladex implants while Im undergoing treatment of any kind.
Im due to have another bone scan next week, and I think my onc will be arranging a ‘look see’ scan of my secondaries very soon, so I dont know yet if gem/taxol is working. Has anyone had similar treatment? If so what were the results?
This may have been covered in a past thread, but I havent found it yet from the ones Ive so far read, and there are so many eh!!
Hi Gem,
Sorry to hear about your diagnosis. I’m another of the girls with liver secondaries. I have just started zoladex and had epi & 5fu before, I have no experience of gem/taxol but sorry to hear its knocked you about a bit. When I was having chemo I had a scan about 6 weeks in and am due to have another one in two weeks to see how I’m going. I hope someone will be able you with the info you need.
Take care
Allie
Hi Gem,
I have liver secondaries and had Taxol and Herceptin (Apart from 1st few weeks on FEC). My tumour has shrunk steadily from 3.5 to 1.5cm, over 8 months of treatment. For some months I had weekly smaller doses as my blood count just couldn’t recover between treatments, even with neutrophil injections. Otherwise it was every 3 weeks.
I don’t know anything about gem/taxol.
Good luck with the bone scan
Jacquie x
Hi All,
I think I’m in the right place - but who can tell. Frequent visitor to numerous forum sites but never joined as I’ve usually found information from reading the various entries. Anyway, I’m now indesperate need of some advice please.
My Sister phoned me earlier this evening to let me know how her check-up had gone at the hospital today - she was first diagnosed with breast cancer in 1999 and had a lumpectomy performed on her left breast. The cancer had spread to her lymph nodes. She had a long haul of chemo followed by radiotherapy and spent 5 years on Tamoxifen. In 2006 she found a tumour under her right armpit which was too large to operate on. This was given some very hefty chemo to shrink it but by which time had spread to her right breast and lymph nodes. She had both breast and numerous lymph nodes removed in October 2006, again followed by some really vicious chemo. This was that strong and making her that ill that her consultant decided to halt the treatment as it would have probably killed my Sister. She has very severe lymphodoema in her right arm and a lesser case in her left arm. She has been unable to receive any treatment for the right arm arm as yet due to infection. She has been going to the doctors for the last 3 weeks with a pain in her ribs - the doctor thought she may have cracked a rib due to bad coughing and sneezing fits. Well anyway, to get back to my comments at the start of my message - on her visit to the hospital today she has again been diagnosed with cancer. She has had a scan and they have found a tumour behind her ribs roughly the size of an egg. The consultant has told her that it is in-operable and they are going to try to shrink/stunt growth with chemo given through tablets. This is the only way they can administer chemo due to the fact that her veins are shot from all the past chemo she has had. They have taken her off the Arimidex that she has been taking for the last 12 months. Whilst we always knew that the cancer would eventually come back, we never expected it to be so soon - especially with all the chemo she has endured. We even got as far as her consultant telling her on her last visit to him in Dec 06 that all the cancer had finally gone.
The thing is that now we don’t know what to expect. We’ve (my Sister and I) gotten by in the past by doing research, asking questions, etc. etc. and supporting each other every step of the way. We are extremely close and have fought the cancer together (my only regret is that I couldn’t have taken away some of her pain) and have always been positive despite our immediate family falling to pieces at the news. I just don’t know where we go from here.
She is waiting to go for a full body scan to determine if the cancer has spread elsewhere. Meanwhile I need some help please. Can anyone give any info or advice as to what to expect, what other treatments may be worthwhile, anything that we can get our teeth into to fight this thing. They have put any treatment for her lymphodoema on hold as they say it is not necessary!!! Does that mean she hasn’t got long to live or that the problem is now un-treatable due to the new cancer??? Her consultant has said that the long term forecast is not good - what the hell does that mean??? I currently have a close friend who is entering the latter stages of pancreatic cancer and she was told she had between 3-6 months to live at the end of October 07. Is this what they mean??
Any help or advice would be greatly appreciated and please accept my apologies for going on for so long.
Many thanks in anticipation to all you brave, wonderful people out there.
Hi
I’ve never had the tax/gem combo. I had taxotere singly and it made me really ill and i thought i would never have chemo again as it wouldn’;tbe worth being that ill.
I had it after surgery due to highnode involvement (I had FEC pre surgery as lump huge) so it was done as a precaution to prevent spread so can’t comment on how it worked.
However, I did have vineralbine for my lung secondaries which did a brilliant job and also shrunk my liver one and the one in my opposite armpit.
My cancer is extremely aggressive so have since only managed about 2 months before moving onto next chemo. Capecetabine worked for 6 months and now on gem/carbo which again has helped shrink everything.
As you are hormone positive, you have those options as well as chemo.
BC is so much more individual than other cancers as we all can have so many variations ie hormone pos or not, her2+++ or not or any variation and what works for one may not work for someone else even if they have the same ‘type’ so although it is good to know what is available, the success rate in individuals vary so much, you just have to listen to the oncologist and discuss with your knowledge what is your best option next.
Sorry - that appears very negative - it is just there is not a clear cut answer to your question.
I hope the scans show improvement and hope the rest of the course goes ok for you.
kate
Welcome to the BCC forums where I am sure you will receive lots of support and information from your fellow users. I am sorry to read that you are so worried about your sister at the moment, whilst you await responses it may help you to call our helpline for a confidential chat to one of our specialist nurses which may help you with some of the concerns and queries you have.
The number to call is 0808 800 6000 Mon-Fri 9am-5opm and Sat 9am-2pm.
Hi Lozzi
So very sorry to hear of your sister’s current condition. I don’t know where you live, but if it was me, I would ask for a referral to a specialist cancer hospital, i.e. the Royal Marsden in London and Surrey, or Christie’s in Manchester. They only deal with cancer (all forms) and may have someone who can help, or at the very least, give a second opinion as to her current treatment. Nor sure how you would do this, but in the past when I have wanted to change my gastro, my GP has done the referral and there was no fuss.
Moderator
We seem to have 2 threads happening here at once. One is the Gem/Tax from Gem and the other from Lozzi.
Is it just me but it would be easier if you separate these threads?
Kate
Lozzi
I am so sorry to hear your news about your sister. It’s lovely for her that she has you and presumably you live near by. I’m close to my sister and i find it so hard that she is 120 miles from me.
Anyway, back to your sister. i think until you get the results of the second scan you will not know the true extent of spread or if it has not gone beyond where you already know and then timescales can be discussed further but they are often not accurate as we all respond differently to treatments.
I do not understand why they will not treat her lymphoedema. Where I live they carry on treating it even in the hospice . If she has severe lymphoedema it can become infected easily especially on chemo. I know because this has happened to me twice now and I’ve got moderate lymphoedema.
I also have extensive lung and bony secondaries and it is also in my lymph system in my other armpit and a little one in my liver so I know what it is like living with secondaries and how scary it is.
I do not know what chemos your sister has had but i would hope there are more options for her. I don’t know anything about hormonal bc being non-hormonal but I understand they can change them around and often get good results.
I would have thought she could have had intravenous chemo via a line or a port which are put in the upper chest area.I’m sure there is info on this site about those options.
i have taken the oral tablets and they worked for 6 months. I now have a long line (Hickman line) and am having chemo through that as my veins are shattered.
I was told in Oct 06 i would only live 3 -6 months but I’m still here so you can never tell but know I am running out of options now.
i would ask for a second opinion or as suggested be referred to a Centre of Excellence like the royal marsden. Thye often run trials of drugs that you would never have access to otherwise.
Hope you get good news from the scan and that the tablets control things and shrink the tumour.
I hope you’re not offended by my comment to the moderator but I think more people will help you if you have a separate thread…
Wishing you all the best
Kate
Many thanks for your reply. I’ve printed it out and I’m going to see my Sister this weekend so I’m taking it with me. Thankfully we only live about 40 minutes away from each other so I can easily get to her. I’m sorry to hear that you are so far away from your Sister - I don’t think we could have gotten through this last few years if we had been that far apart.
Thanks so much for all the information - it is greatly appreciated especially after all that you’re going through yourself. I know we have to wait for the scan, which should be happening within the next 2 weeks, but the waiting is the hardest part as you will know. I just try and gather information about everything so that we can discuss all the various options and problems that may be thrown our way. My Sister doesn’t use a computer (although I do keep trying to persuade her to get one as she is practically housebound and it would keep her in touch with the outside world) so I do the research part and take it to her.
I can’t remember the names of all the various chemo’s she’s had but I do know the last time she was in hospital with pneumonia they tried to put a line into her chest and failed after several attempts.
Will let you know how we get on but in the meantime I wish you all the luck in the world with your battle and if you ever need a shoulder, please don’t hesitate to make contact.
Many thanks for your advice re a second opinion. When we have had the scan and seen what the results are this is something that I am going to discuss with my Sister.