Mum dying - urgent...colorectal liver mets after resect

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Mali

Mum dying - urgent...colorectal liver mets after resect

Postby Mali » Sat Mar 04, 2006 5:25 pm

My only true friend (apart from my little boy) in the world is about to die. My dear Mum (69) and a young 69 at that, has just been told after an ultrasound that there are 5 shadows on the remainder of her liver.

History - 10 years ago diagnosed with breast cancer. No chemo or radio, no mastectomy. Instead irregular treatments of tamoxifen and arimidex.

3 years ago, diagnosed with intestinal cancer. Had 30 cms of intestine cut out. We were given no indication that this can lead to liver cancer. No chemo or radio therapy was offered after the op. (I think the consultant decided it wasn't necessary.)

Last June (2005) 13 cm cluster of tumours found in liver. October 2005 had liver resection. Left with less than a quarter of liver. The one remaining drainage duct in liver stopped functioning and as a result my mum has had a 'pig tail' catheter attached through the centre of her abdomen to her liver with an external drainage bag for bile fluids. As a result she also had a stent fitted into the intestine to encourage drainage but still needs the bag.

2 other complications are that she is developing worse and worse symptoms of irritable leg syndrom or motor neurone disease where especially at night her limbs seize up. This however, in comparison to the cancer would almost be on the periphery of our concerns. She has just started taking diazepam to control the muscle spasm and last night she managed to sleep.

last complication - MRSA (hospital superbug) present in her catheter, but not in blood stream.

Questions:

Less than a 1/4 liver left with 5 mets in it. Why not treat them with drugs, try to shrink the tumours. If successful, why not consider transplant. Surely chemo, if successful would eventually allow a cancer free body to be considered for liver transplant.

Doctors told her she is not viable for chemo. (I think they think she is too weak.)

My argument is if her prognosis is death sooner rather than later then isn't there a programme of chemo we can try.

At best it would rid her of cancer, at worst, it would prolong her life.

She's just come in - she wants a look at the other posts.

Please reply urgently.

Dot
Posts: 44
Joined: Mon Dec 26, 2005 5:32 pm
Location: maine

Postby Dot » Sat Mar 04, 2006 9:46 pm

Dear Mali;

I don't know what area of the country you live, but if you are not already at a large teaching hospital with a cancer center go on line to find the nearest one to you. Or go on line to the National Institute of Health to search clinical trials. Also try the American Cancer web site. Try to see if there are any clinical trials being offered that your Mom could get into. The Dana Fabar Cancer hospital is in Boston, a 4 hour drive for us, but we went there for a second opinion and also to see if my husband would qualify for a clinical trial. We were told that since he already was on chemo, then he could not get on a clinical trial. Since your Mom is not on chemo, maybe she would be a canidate for a clinical trial. Also, I recently talked to the oncologist about a vaccine and they told me that there are some clinical trials using vaccines to kill cancer, but they thought it was only being used in late stage renal cancer when there was no other treatment option available to the patient.

Hope this helps. Both your Mom and you are in my thoughts and prayers.

Goofydad
Posts: 15
Joined: Sun Mar 05, 2006 1:32 am
Location: Upstate NY

your mum

Postby Goofydad » Sun Mar 05, 2006 1:45 am

Mali,

Most of the chemo drugs are cleared from the body by the liver, which converts the active agent to an inactive after it's done working. She may not have enough viable liver left to support chemo, and a small dose may be too much for her, but not enough to kill the disease and the treatment would be worse than the disease.

Get to a specialty hospital; in the States Johns Hopkins, Sloan-Kettering, or Dana Farber. There are better minds than mine with better answers. Good luck. I wish the best for both of you
Pressure - It can turn a lump of coal into a flawless diamond, or an average person into a perfect basket-case.

Mali
Posts: 80
Joined: Sat Mar 04, 2006 5:41 pm
Location: United Kingdom

Mum

Postby Mali » Sun Mar 05, 2006 6:44 am

Goofy Dad and Dot

Thanks so much for your swift responses. We are in Birmingham in England. Dot, Mum is already at a teaching hospital with a cancer centre over here.

But we cannot take the first and only prognosis. Hence, we are researching across the world. Have answers from Switzerland and now the States. I've heard Sloan Kettering mentioned numerous times and they take international patients.

I shall contact them right away and Dot and Goofy Dad, I will also contact Dana Faber regarding trials.

Thanks so much to both of you for your very practical suggestions. I will get on to them immediately and thanks for your good wishes.

All the best
Mali

guest

mum

Postby guest » Sun Mar 05, 2006 8:01 am

You might also contact Johns Hopkins in Baltimore,my son has been seeing oncologist there.Our neighbor who has another form of cancer is receiving treatment there right now, when Penn State-Hershey had nothing else to offer him.Anything is worth trying-as we all know there are miracles happening everyday.My prayers are with your family. Thelma

Dot
Posts: 44
Joined: Mon Dec 26, 2005 5:32 pm
Location: maine

Mali - CHECK THIS OUT!!!

Postby Dot » Sun Mar 05, 2006 3:41 pm

Hi Mali;

Since you are in England, check this out. There is a company there that is doing trials on the cancer vaccine called TroVax. From all I have read, this is a vaccine that 91% of patients have tolerated very well; it helps your own immune system by recognizing a certain protien on the cancer cells as foreign and thereby kill the cancer cell.

I was hoping to get my husband involved in this trial, but no luck so far in this country. Here they are only using this on Renal Cell Carcinoma and Pancreatic Cancer. But they did the clinical trials on colon cancer in the UK.

Web site is: http://www.oxfordbiomedica.co.uk

Good luck and keep us posted!

Mali
Posts: 80
Joined: Sat Mar 04, 2006 5:41 pm
Location: United Kingdom

Mum and recurrant liver mets

Postby Mali » Mon Mar 06, 2006 4:33 pm

Hi Dot and everyone who has responded.

I want to thank you all for your kind wishes and responses. You will never know how much you have all eased the pain. Just a kind word from strangers over the net can mean so much. (I wish I had similar responses from friends and extended family here - no such luck.)

Anyhow, Dot,
I've contacted the OxfordMedica group but I haven't received a response. As we no longer have the luxury of time, I shall chase them up tomorrow from work.

Re. Sloan Kettering in New York, they have an affiliate hospital in Switzerland too. It is Genolier in Geneva, and since they are closer to us geographically, we've contacted them to.

On Friday we go to see Mum's usual consultant. I shall present him with all the research we've done, hoping to inspire a positive view.

All the very best to you, Mali.

Been There

Answer to Mum

Postby Been There » Thu Mar 09, 2006 11:19 pm

My mom passed from Colon Cancer in 2003-it also affected her liver. Here is what I can tell you-they can't do a transplant because other areas have been afected however the liver re builds and I would push ANY treatment available. My mom was my best friend and a fighter she was given 6 months and lasted 19. Don't ever give up keep asking questions until you get the right answer or until you mum decides she is tired and done which is what mine did and I will say passed VERY peacefully at home on her terms not the doctors. Hope this helps

Mali
Posts: 80
Joined: Sat Mar 04, 2006 5:41 pm
Location: United Kingdom

Mum

Postby Mali » Fri Mar 10, 2006 5:33 am

I've just spent ages typing an update and response and have just accidentally deleted it. I've got to do other work now so i'm going to type a new update later.

To the last guest who wrote, I'm so sorry to hear about your Mum. I hope and pray she found some comfort through being at home at the end and on her own terms and hope you did too. Thank you for your advice.

I shall write an update later.


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