Hi Ladies
I am desperate as I have been told today I have an enlarged liver and the cancer is rapid. The chemo has obviously not worked. I am 7mnths from origanl dx grade 3 triple negative 26mm tumour and 2 lymph nodes involved.
I am in pieces as is my whole family as they have not recommended anymore chemo and to basically go home and enjoy perhaps the last 2 weeks I have. My onc said if I wanted to try chemo he will support me but of course it going back to the time and side effects to prolong my life by maybe a few months…!!!
I have a 6yr old and 20mnth old…I cannot stop crying, this is like a bad dream I will wake from.
The tumours on my liver have started to dye in the middle where they have eaten themselves up so he says…my tummy is so distended I look pregnant. This has only happended drastically in the last 2 weeks…my head and heart is everywhere. Do I get a second opinion or what this is all so new to me…pls can anyone help I am sorry just desperate…
Love P xxxxxx
O Paula, this is such awful awful news to get! You poor poor thing. I feel so shocked and saddened for you. Please please get a second opinion. If I remember correctly, I think you mentioned in a previous post that your onc was away on hols and left you to wait for ages for scan results, that isn’t right. This is all so sudden for you. I am thinking of you. I hope some ladies with more knowledge will be along to help you. Take care, xx
Hi Teacup…thanks dor your thoughts…I am seeing GP tomorrow, BCN and Macmillan nurse…this can’t be happening I am going to try and sleep just scared I might not wake up…!!!
xxxxxxxxxxxx
I hope you do get some sleep and I really hope your GP, BCN and Macmillan nurse will be able to give you some good advice. Sleep well, xx
hi…this is such awful news…i hope they can find a new regimen for you …I’m triple negative too…and currently on veno plus ifosfamide…an old drug…but my regimen is a bit different because I’m living in Malaysia…i to have several mets …to be exact in my liver, bones lymph nodes and lungs…i really don’t know what to say…i hope you find peace some way…try talking to the nurses and counsellor at least you can let out your frustration…i pray that you can find a way out …if in Malaysia usually in situation like this we find alternative medicines either Chinese, Malay or Indian medicines… the hospital I’m working in has Chinese medicine which my doctor is referring me to after i finish my chemo…i hope you can find something…
wishing you happiness and lots of love
izzati
Dear Paula – like others who have posted, I am both saddened and shocked to hear about both your situation and your onc’s very poor “bedside manner”, and I do hope that you’ll be able to get another opinion and some practical help regarding your abdominal problems. I don’t know where you live, but there are many specialist cancer hospitals around the UK, where you should be able to find an onc who specialises in breast cancer who can see you quickly, with support from your GP & Mac nurse. You might also get some value in speaking to the nurse available here at Breast Cancer Care. Finally, we are all so different in how we experience our BC, but there are many of us on these forums who have been told “there’s nothing more we can do . . . just enjoy the few weeks you have left” who are still with us years after hearing that very scary prognosis – hope you get better treatment very soon.
Marilyn x
Dear Paula
I am also very sorry to read about the situation you are in at the moment and as Marilyn has suggested, please do call our helpline nurses for some further advice and someone to talk things through with. The number is 0808 800 6000 and it’s open weekdays 9am-5pm and Sat 9am-2pm.
Take care
Lucy
Hello Paula, what a dreadful shock for you and your family. Yes do get a second urgent referral. As Marilyn has said I too know others who are still here despite being told there’s nothing that can be done. I’m sure you’ll get lots more replies and good advice here today…With Love, Belinda…x
Oh Paula, all I can say is I am so so sorry. Sending massive hugs. xxxx
Oh Paula
I have just read this and am so saddened to hear your news and absolutely devastated and shell shocked for you. I would definitely get a second opinion as soon as poss and if it were me would probably have to go for more treatment as like you, i have a 20 month old and 4 year old.
I think Marilyns post is so true and I hope u get some answers and a referral and that something can be done.
Sending you all my love and a massive hug too
Love
Dawn
xxxxxxx
Paula,
I have followed the other thread to find you here and I am so desperately sorry for you to have to cope with this terible news. I am in tears thinking of you and the babies but have tried hard to give you something positive back and I am sorry if this is not what you want to hear but I would go to the ends of the earth for extra months and have tried to give you some options to explore. Could you ask about another trial. I know someone who has had 5 lots of chemo, no progress from any of them and started a new unlicensed drug 4 weeks ago that has just come in. Once you get to a certain point you can try unlicensed drugs, that you could not have before.
This second one is just a wild thought and financially may not be a possibility, but just wanted to give you another avenue.In the bibliography I have been reading, the author ran out of options and realised that America were 4 years ahead at least and we are just trialling things they are using and less restrictions there. Anyway she flew to New York for an appointment at Sloane Kettering (top cancer hospital in world more or less) and they said they could give her the newest drugs but only if she went and collected them. They got her 17Dmeg which at the time UK had not even started looking at. At the time she had to pay a 3000 deposit on arrival but it did not say what other costs. My cousin in law lives near there and is bullying me into going over to see them. The other thing is she then went to the Royal Marsden in Surrey who were the only place actually working on the same drug, so maybe worth asking for an urgent second opinion there. It bought her more time than a few months, but I know every case is different. There is also a top cancer hospital in Paris, which is nearer but I will have to look up the name if you want it.
Mostly I wanted to send you a big hug of support as I know everyone here will be sending you love and praying for you.
Lily x
Dear Paula,
I think you should definitely follow up some of the suggestions made here. There must be many more chemo options available for you, if you are willing to try them. The reasons given by your oncologist do not sound sufficient to stop chemo. As is often said, oncologists do not know how long any of us will live.
I hope that you manage to get something more positive to work with, very soon.
With very best wishes.
Jennyxx
Dear Paula
I am so shocked and sorry for you and your whole family. Words fail me. I can’t begin to imagine what you are going through, but am sending lots of love and hugs.
Sharon
In 2006 they said my wife had six months as 75% of her liver was affected, after Xeloda,Taxoter and now extended FEC treatment, it is not better but not a lot worse and she is still here, I would suggest getting some better opinion.
Hi Paula, hope you are feeling ok today. I’m glad to see you have got some good advice and hope from other users. I hope today goes well for you. Much love, x
Hi Paula
I am so sorry to hear this truly horrid news. Please dont I hope you dont think I am intruding has he mentioned avastin? It wont cure you but it could shrink and hold back the liver tumours. I wont bore you with all he details but if you can spare the time check out my threads re avastin. Very briefly my liver is stuffed with tumours and in Jan it was S…t or bust time after 6 taxol and 4 avastin I had 50% shrinkage. If I can help pm me.
Love Debsxxx
Hi Paula I am so sad to read your post as I was following your progress on the TACT 2 trial thread that you are on with me and you were doing so well. What on earth happened?
Please get a second opinion, from your posts I feel you are a person who enjoys life and from what others have said on here there isn’t any need to give up.
As has been seen numerous times cancer doesn’t always follow the expected path and who is to say that another type of chemo won’t help and you won’t be writing on this website for a long time to come. lots of love x
Hi Paula, I am sad and shocked at your news. I can’t believe your oncologist is giving up so soon on treatments. Please seek another opinion.There is many chemos to try and maybe one will work wonders. Sending you HUGS!! Funnyface
Hi Paula
Like everyone else I am just so very sorry to have read what you have posted. What a nightmare. Words fail.
I hope and pray that the suggestions others have come up with can help you.
Lots of love and hugs
FizBix xxx
Hi Paula
I was also told 22 months ago that I had 3 months to live because of the state of my liver and a lot of the chemos were out of the question because my liver wouldn’t be able to cope with them. I was started on Xeloda and have been on it constantly since that time - have you been on this chemo?
I also have been in that very scary and dark place and can relate totally to the feelings you’re experiencing. I wouldn’t go up to bed by myself as I needed my husband to be there with me all the time - hard to explain to people what it’s like.
Like everyone else has said above, I hope you can get a second opinion by another oncologist and that there is something else they can try.
Take care.
Pinkdove