Hi all,
just been looking thru all the forums. Still very mixed up after getting the news that the 3rd lot of chemo wasn’t working.
I got diagnosed with BC in June 2007,stage IV. As a mother with 2 small kids that was a devastating blow. Had full mastectomy and in July they started me on FEC. 6 doses later the scan showed that the liver lesions had shrunk and the ones in my lungs had disappeared. 3 months later the liver ones were growing again. I was then put on Taxotere. The side effects were dreadful and still lingering now! I was supposed to have 6 doses, but scan after 3rd one showed it not to be working. The next one was Xeloda in tablet form. My onc said if that worked I could be on for years. Sadly my last scan shows that it isn’t working. She is now putting me on Navelbine. Also said that it would be the last one and that I should arrange things for my kids. I am a single mum, my kids are 4 and 3. That was the last thing I wanted to hear. Is anybody on Navelbine after having had so many different other chemos? And what are the side effects? Should I really give up hope or should I insist they try something else if this doesn’t work? I am quite desperate now.Don’t want to leave my kids.
Hi Maroke
I’m really sorry to hear that your tumours haven’t been responding to Xeloda. You’ve have had such a horrid year and it must have been so hard to get through all that treatment being single and with young children. I know first hand that it is such a shocker to be dx at Stage IV (liver & lungs for me in March). It is so harsh and hard to get your head around.
Unfortunately, I have no experience of Navelbine as have only just finished first line of chemo but am sure that others will come on soon to lend support and share their experiences of it. To hear your onc say that she didn’t have any further chemo options for you must have been terrifying and I really don’t think there are any suitable words for that. I sincerely hope you get a good result with this chemo which could well work where others haven’t. There are many women on this site who can testify to that! Personally I think it’s worth seeking a second opinion now about other treatment options or trials which you could turn to in the future. Where are you being treated now?
Massive cyber hugs!
xxx
Hi Ripley,
I’m Belgian and am being treated at the UZ in Gent. The thing is that I feel well and I don’t understand why this has to be the last chemo. Surely there must be others they can try! I don’t want to stop trying. My kids need me. This b…ything must respond to something surely. Sorry, I do get angry at times.
Thanks for your reply and support, it means a lot to me
xxx
Hi Maroke
I am sorry to read you are having such a tough time, if you think it would help to talk through your fears and concerns please contact the BCC helpline. Here you can talk in confidence with one of our trained members of staff who will offer you a listening ear as well as advice and support. The number is free phone 0808 800 6000 and the line is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm
I hope you find this helps.
Kind regards
Sam
BCC Facilitator
I’m so sorry to hear your news. You’ve been so unlucky with the speed of your spread. I thought mine was quick enough. I am now on my last option but may push for navelbeberine again as it worked so well for me the first time. Since april 05, the longest I’ve had off chemo is 6 months and since sept 06 been 6 -8 weks off chemo before starting next so know how frightening it is. I was told Sept 06 maay only live 3 months but the vineralbine/naveralbine really shrunk my secondaaries.
Navelberine is the same as vineralbine so there is a fact sheet about this on this site which might help. Vineralbine worked really well for me and gave me a chemo free period. The main problems I had with it was it can be painful when it goes into the vein and that pain can last for a few days. They do vineralbine in tablet form but not all hospitals will give it that way. I had a lot of cramps in my legs and chest when on that treatment plus I had diarhoea but apparently 80% get constipated. I got tired by about the 5th cycle but before then had been fine. Nails were a bit flakey - but all chemo seems to do that in some way of other.
In regards to options, I’ve had gemcetabine/carboplatin together but some hospitals do gem/cisplatin so that should be an option. I didn’t tolerate taxotere - I had 4 out of 6 and still got peripheral neuropathy. I’ve now started weekly taxol and am fine on it so that should be an option. Some oncs will give a slightly different form of the E in Fec on a weekly basis.
As for your future, none of us can say. I’ve outlived my expiry dates several times now but I think you should make sure your affairs are in order so incase anything does happen quickly it is all in place for your children. I don’t want to die and leave my young 3 behind but I’m on my last option now and am quite ill. I’ve had more chemos than you as have had the gem/carbo and now weekly taxol. Don’t give up hope but at the same time I think you need to be aware that your life will be limited and you need to make sure your children/family are prepared. Sorry - that sounds so blunt. I just couldn’t write it any better.
I think you should ask for a second opinion from a big centre of excellence - don’t know where you live but the marsden will give second opinions.
I think you should ask about gem/carbo/cis and weekly taxol/epirubicin. Some people can also get avastin so worth chasing that as well.
Really feel for you and hope I haven’t distressed you more but vineralbine worked really well for me and gave me a really good 5 months plus the gem/carbo worked well and again gave me a good 6 months. I know this sounds so short but I’m telling you what has happend to me and not what might happen to you.
My other thought is do you have contact with a macmillan nurse or hospice nurse. I’ve been under the care of the hospice since sept 06 and they have been so helpful espically with the children.
Sorry - feel I’ve written an unsupportive post and really wanted to support you. Hope the naveralbine works and you don’t have too many side effects. Definately get a second opinion if your onc is not prepared to treat you further. That happend to me in Dec - he refusd to treat me but I persuaded him to try the gem/carbbo and am still here and fighting my corner.
Lots of love and I do apoligise if I have upset you by mentioning the practicalities.
Kate
Hi Kate,
thank you. I know my life is limited, I just don’t want to give up trying. I am worried about this new chemo. Worried about my kids. I don’t want to be told this is the last one they are going to try. As long as I live there is hope and the longer I can stay with my kids the better. I just want to keep trying even though we all know the eventual outcome. I’m not getting help from nurses at the moment, have 2 wonderful sisters who do a lot for me. Kate you didn’tupset me and I am grateful that you took the time to talk to me. One problem with this disease is that nobody understands, unless you go thru it yourself. I find myself getting really angry at times. So thank you
maroke - i found vineralbine the easiest chemo to have and nothing like FEC or taxotere. I went away for quite afew weekend breaks whilst on vineralbine including going to Prague so hope you feel ok on it.
I feel as i said before if they r not prepared to give you anything more after vineralbine you must ask for a second opinion. Gem/carbo or gem/cisplatin or even weekly taxol are possibililites. Don’t be cheated out of extra time here with your kids.
There have been discussions here on site how talking about dying is taboo. it’ makes hard reading but is interesting.
I can’t get angry about the fact I won’t live for long - just very sad and desolate I’m glad your sisters are supportive. My sister is supportive but she lives 120 miles away and my mum lives 140 miles away. We try and see each other when we can but it would be so lovely if they lived just down the road.
I’ve met quite afew women here or from anothr forum either at informal meets or at BCC events. That has really helped me to meet other women in the same boat and such a relief to be able to talk about how I really feel and finding out how they cope. I did the younger women’s weekend and the living with secondary bc day.
If you live near any of these events I would recomend going as you won’t feel so alone then.
I’m with you when you say as long as I’m alive there is hope and the longer ican be here for the kids the better. The kids have really kept me going especially since May when it spread to my liver.
keep pushing for treatment and get a second opinion - I’ve found you have to look after number one when dealing with your oncologist. you deserve the best treatment and sometimes you have to be very pushy to get it so go for it. You’ve got nothing to lose.
good luck and let me know how you get on
Love Kate
I agree that a second opinion would be a good thing. Oncologists can vary a lot in their approaches. The usual advice is to seek an opinion from the Royal Marsden if possible.
Kate,
thank you so much! I live in Belgium but I couldn’t find a forum on BC I liked. I am so glad I found this one. Thank you for the options I should ask for, if you don’t know you tend to accept everything the doc says. I have been reading amazing stories here, learnt about amazing women and I find strength here. Whenever I am down I come to the forums and get hope from it. Not talking about death would be no help. It’s hiding from the truth but it doesn’t mean we have to go without a fight. I only get angry because I won’t see my kids grow up. But I try to make the most of the time we have left. I read about this clinic in Frankfurt who remove liver lesions with laser, I phoned them and they are sending all the info i need.They asked me how big the lesions were and I couldn’t tell them as my onc has never told me. The nurse in Frankfurt said if the lesions were not bigger than 5 cm they could remove them. The bone lesions and lung lesions were not a real problem. So I have another option, depending on how much it is going to cost,because it would have to be done private. Please keep in touch
love Maroke
My first thought when you said you were in Belgium was to find out about the German clinic!!!
At least as you say, you can go in now with more info. Really hope your liver ones are under 5cm for you.
Have everything crossed for you - so you’d better find out soon!!!
Love Kate
Hi all,
slowly coming out of "down"period. I hope more people will react. Did anybody have other chemos which didn’t work? Did they put you on Vineralbine after to try that? Were there any positive reults?
Kate, I’ve read your blog, I can’t tell you how much I admire you. I can only hope to be as strong as you
love Maroke