My Dad 66yr old with bowel cancer stage 4 with liver mets

Judy,

Sorry, I had no intention of upsetting you. Clearly you are well informed.

Patrick

Judy

I have bowel cancer.  Over the last 3 years I've had 3 different lots of chemo, Oxaliplatin with 5fu, Capecitabine, and Irinotecan. I've had 2 liver resections. Upper lobe of left lung removed, and para aortic glands removed. I had been in remission for almost a year, then last month brought the shocking news that the cancer had returned. This time in my liver and in both lungs. Whilst the tumours are operable it would not be the best course of action for me. I entirely agreed it would not be the best  course of action as I am still in pain from surgery last year. Further chemo was discussed, and I asked about Avastin and the drugs fund. Although the medics new about the drugs fund, they'd not had the go ahead to start applying. I dicided to hold off on chemo. My prognosis was not good. Then came the news that an Interim Drugs Fund was to be made available as of 1st October.

My oncologist applied to the fund last Friday, and yesterday I was given the fantastic news that the application was successful and I can have Avastin which I believe will extend my life expectancy. I'm adding this to the forum to let you know that if your oncologist believes there is drug out there which has not been authorised by NICE, there is still a chance you can have it.

I don't do politics, but feel I should say that in his election manifesto, David Cameron promised £200 million for this fund and has made an interim amount of £50million available as of 1st October 2010. Whilst this is a start, and without it I would have had little or no hope, it will not last long when divided up amongst all of the different regions. So let's hope that the rest of the fund is made available in April 2011 as promised, and if any of you think this drug can help you then 'SPEAK TO YOUR ONCOLOGIST'.

I did an interview on the One Show yesterday which will be screened on 26th October to hopefully further raise awareness of the 'fund' and of Bowel Cancer, which is seldom seen or heard on national TV.I hope that lot's more people will be applying to this Fund and will be given hope like I have. I start treatment next month and will let you all know how it goes. Again no hair for Christmas, but at least my friends know I'll appreciate a wooly hat........................Heather x

Hi Judy,

This is my first venture on the site. I am 59 yrs old, diagnosed bowel cancer in April 2008, had surgery and then 6 months of 5FU. April this year my cancer has spread into lymph and am now on palliative chemotherapy Oxyplatin and capecitbane, fortnightly infusions for 6 treatment and then followed by CT scan, tumours are shrinking, so carried on with next 6 sessions, of which I have 3 left. After this my oncologist has said there will be no more they can do. Yet you have had 3 courses of treatment.... how did you manage to get Avastin, did you ask your Oncologist about it or your GP??

I have also developed clots on my Lung, for which I have to inject Fragmin every day for my period of Chemo and 3 months after, my GP and oncologist say that this seems to be a side effect now of chemo, does anyone else have this??

It has been informative reading all your postings, the main problem is the side effects, I had a bad time after me 3rd session and had to delay for 3 weeks and my capacibane was reduced, since then i've coped quite well.

Hope you are all doing ok

Hi Heather thanks so much for that. Bob's oncologist is aware of the drugs fund, in fact I think there is £7000000 avaiable for London. She has been applying and on Friday we will find out how it has gone, she will be quoting Vince Cable too. She managed in the end to get cetuximab for Bob before it was NICE approved from Richmond PCT and has had some success getting Avastin. However she was already making the application 2 week ago so on Friday we may have some news when we see her. Bob will be having it with oxaliplatin and 5FU. Are you having a combination of irinotican and oxaliplatin? 

Bob feels very well in himself at the moment and would have had no idea there was anything amiss so hopefully he starts from a strong point. He is incredibly positive and feels this is a chronic condition and when he's not on chemo he wants to travel and do as much as possible during the breaks, The oncologist is very keen on the Avastin and said she has had some good results from it. Like you bob could have had operations but needs a blanket chemo to pick up any stray seeds. Then they will assess. 

Hope all goes well for you, we are battening down the hatches here!

Judy

Sueanne sorry I didn't see your post. Bob has had 3 lots of chemo and 2 liver resections. If your tumours have shrunk is it worth having another opinion as to other treatments or ways to manage your cancer? Surely one lot of chemo isn't all they will offer you if it's effective and shrinking the tumours well? Keep asking questions, there is panutab available as well which may be of use to you. Not sure if you have to have the kras gene test, but do mention it.

Judy

Heather, will be watching the one show on the 26th then. so sorry for you that it came back how cruel after a year of remission..but hopefully youve beaten it before and avastin will keep those nasties in check.

sarah x

Hello everyone, it is I,

Well, what a terrible time my poor boy has been through, I am not in the business of frightening people so I will not go into detail.  He was so very ill I was really worried this may be "it".  He has now had surgery (no tumour removal) and is feeling so much better, I have to say I am truly amazed at how he has coped with everything that has gone on (if anyone wants to know pm me) and how well he is at the moment.  Still in hospital but being looked after well.

Sorry, but I havn't  really been keeping up with things lately but Judy I hope things go well with Bob and the Avastin, you go for it, I know Nev  and I would, havn't got much to lose really have we!  Hope his root canal work is going ok, I truly don't envy him , I found it absolute agony!

Jules hope everything is ok with your Dad and his chemo.

Jash, 

how is Al doing, has the sickness been controlled and has he re-started chemo?

Hello to Heather and Sarah.

I will look out for the One Show and I will keep my fingers crossed for the Avastin.

Take care all

Love Ann xx

Hi Ann,

I requested to add you as a friend so you/me can use pm, would be interested on hearing a bit more details on what was the caue of Nev latest scare. My Mum got multiple liver, lung and abdominal mets, over 2 weeks ago started being vomiting, feeling very full, bloated and not opening bowels for 10 days plus. She had an xray on Thurs, results show no blockage or tumour pressing on tract so thought we had little reprieve and Mum perked up ( more with relief I think)  but 24 hours later she started vomiting and feeling very nauseous again. Her weight was low after a year on chemo so now with 2.5 weeks of barely eating anything other than clear soup etc I'm frantic with worry her weight is dropping so fast.

I do have Harris Hospice involved and they giving support and advice however they are taking the lets see what happens approach as not a lot can be done at this stage but would be grateful if you could let me know if there are any similarities with Nevs case and if there is, whats been done about it.

I very heartfelt THANK YOU to everyone for all their kind words and support after my recent posts, sorry I've not got back to you all individually but not had time to log on been so busy looking after Mum, my 4 year old and myself with a 6 month bump on board!

Big hugs to you all

Louise xxx

Louise xx

I also have just joined to get more information.  My husband was diagnosed with small bowel cancer in August of last year and had surgery to remove the tumor.  After 6 months of chemotherapy with 5FU and Omniplatin, the petscan showed two more tumors and had spread to the liver.  No surgery could be done at this point and they just talked about pallative care.  This was in Florida.

My son contacted Duke University Cancer Center in North Carolina and got us set up with doctors there.  They are cautiously optimistic.  After the first 6 sessions of chemo (5FU & Iteacan) the markers went down by about 1/2 and the tumors are shrinking.  We will have our 3rd session of Avastin tomorrow.  At first we could not have the Avastin because our insurance company denied it because it is used to treat colon cancer and is not protocol for small bowel cancer.  There was also a program based on income that we were signing up for that would have provided Avastin for free from the drug company.  Fortunately, our insurance company reconsidered.   He is having a bad 2 weeks with severe stomach pain that may be due to the chemo so they had doubled our pain meds.  Avastin also has side effects of bowel perforation, but they don't think that is happening.

I'm hoping you can find another doctor with a different attitude, but your health system is different from ours.  Good luck to you both.

Hi Chager,

Welcome to our boat.  Well, your husband appears to be having the same drugs as offered  here on our National Health Service, except Avastin, we have to fight for that one and an awful lot of people lose.  The body that controls which drugs are available have recently allowed us to have Cetuximab (don't think its called that in America)  and my husband is having that.  He has advanced bowel with extensive liver mets and treatment is palliative unless his liver tumours shrink enough to allow surgery.  He has recently had a set back and is in hospital having had a colostomy.  At his last C.T. Scan all tumours had shrunk, we justt have to hope for more shrinkage to make surgery possible.  If necessary I will be one of those fighting for Avastin.  I hope your husbands abdo.pains have been sorted.

Take care

Ann