Neuro Endocrine PC; Meths: Liver and Lungs

krot · New User Joined: 23 Sep 2009 Posts: 7

Hello everyone out here.

As I could just find one topic on NET wich offerd no answers, I decided to start this one
A very good friend of ours was diagnosed with PC about 2 1/2 years ago.
Symptomes: Acute jauntice due to blockage of the ductus. A stent was placed and her situation improved radically.
Initial diagnosis was reviewed to so called Neuro Endocrine Tumor (NET).
At the time of the diagnosis it had already spread to her Liver and Lungs.

According to the doctors the the "advantage" of the NET to the AdenoPC was better possibiilty's for treatment and slower growth of the tumors.

The past two years she had 4 Lutetium 177 treatments to wich she responded quit well and life was more or less without any physical problems. Untill last june tumors were even in regression!

So far so good! Untill a few weeks ago. She started to look yellowish again. Blood research revealed nothing wrong with te stent. On top of the change in color, she lost her appetite / vommiting and rapidly lost energie. She now can hardly climb a single fligt of stairs!

Last monday she got the results of the latest MRI-scan. It confirmed all worries. The tumors in her liver had "explosively" grown, and were pressing against her stomach (causing her appetite problems) The verdict: "no further treatment possible" was dropped on her.

Unbeleivable as it may sound there's another complication to this stuatation. Her husband had just returned from hospital after surgicall treatent and chemo for Lung cancer (removed 1 lung but was pronounced "clean" ) on the very same day she was diagnosed with PC. You can imagine how a festive ment home comming turned out.
He now is in the final stage off the illness, heavy doses of morphine and other painkillers. Apart of their only almost mature son no relatives or close friends, so a lot of the caretaking will be on us. No problem! We will deliver no questions about that!

BUT.....some questions. Allthough I know all stories differ, it would be nice to have some lay out of the near future.

Allthough the source was NET PC the Liver seems to be the biggest problem at the moment. As NET tumors are suposedly slow(er) growing, does that go for the meths aswell? Do de progress in the same way or is that dependant on the organ/tissue type?

The progressive and extreme fattigue and yellow color point out disfunction of the liver. she even starts to complain of concentration problems but I'm not sure that is physical or emotional/psychological due to recent stressful developments.
Is there an average timetable of "problems" occuring after progressive liver disfunction, and what are these problems. Roaming the web I understood that at some stage loss off coherent state of mind can/will occur due to poisoning by the bodytoxinne's
Over here, Voluntary Euthanasia is a good possability, but only under strict conditions. A sound state of mind at the moment a patient decides / demands a "last will on euthanasia declaration'" , is the first!.

She allready stated before that she would choose euthanasia over a painfull and inhumane ending of her life. Getting such a declaration from her doctor an the support / endorcement of the request by an independent physician takes some time. (second condition)

What other options are available then our support etc. to extend the quality of life as long as possible and treat the effects/problems in the short period that rests.
Diet? Food suplements? Homeopathics?

MoniqueFBD · New User Joined: 08 Oct 2009 Posts: 1

My sister was diagnosed with a neuroendocrine tumor of the pancreas with metastases to the liver last March. She had a stent implanted. She was prescribed Xeloda and Temodar, and her scan after three months of that showed a 20% reduction. Then two weeks ago she had sudden pain and jaundice. Her stent was blocked (apparently it can happen every six months). A new stent was put inside the old one. The scans done for that showed her tumors growing again. Now the doctor is talking about a liver transplant, which terrifies her.

But this is what I wanted to tell you: her doctor has now prescribed Avastin, a heavy-duty intravenous chemo drug. She just had her port put in yesterday. We are scared and upset at this sudden, unexpected change in the situation (she is only 39 needs to have a long life ahead of her). At the same time, though I am cautiously hopeful that this Avastin might actually make a difference, since it appears to be a relatively new thing, and all I have found about it refers mostly to colon and lung cancer. There is a Dana Farber clinical trial about it, but it is not taking new participants. I guess maybe the results have been good and that is why Avastin was prescribed to my sister.

Also look up Kanzius device, Dr. Curley. I have pinned my hopes on this, but it will not be going to human trials until 2010 or 2011.

When my mother was diagnosed with and dying of lung cancer last February and March (this is the absolute worst year of our lives) I did a lot of research on (DCA). It is in clinical trials in Canada. The only doctor I had found that would prescribe it was Dr. Khan from Medicor Cancer Centres in Toronto. I don't know whether he is still doing it, but I had asked him about my sister in the beginning, and he said he thought it might be effective for neuroendocrine tumors, but they had not tested it for that. This is a last resort idea for us. See also thedcasite.com

I actually had very high hopes for LU177 and Y90 (she hasn't tried either yet), but your post scared me a bit.

Just today my sister is touring the Hippocrates Center in West Palm Beach. The treat many ailments, as far as I understand, through diet and non-invasive therapies--a lot of raw food and wheatgrass. I hope she decides to try it and gets wonderful results. I will keep you posted. Also, if I can think of anything else I've researched, I will let you know. Please do the same if you find something that works. I need all the help I can get to keep my only sister with me and healthy for a very long time.

Best,
Monique

krot · New User Joined: 23 Sep 2009 Posts: 7

@Monique

What was it I wrote that scared you about the LU177? I'm very aware the situation of our friend is frigtning. Frightning as hell!
But although LU177 could not save her, I'm quit possitive about this treatment. More important maybe, our friend still is!.

Thing is, at the time she was diagnosed with PC-NET, the tumors were already widely spread.
I was present at the time the doctors told her that her disease was incurable (right from the start!) and the only treatment would be paliative. LU177 was a possibility in theory but the doctors emphasized that she should question herself seriously if she would undergo the treatment because as they said:"you must keep in mind that you're already very very seriously ill"
As a last resort she went for the treatment and has had a reasonably good two years. Two years in witch the tumors stopt growing.

I know your not looking for "only" two years. But the succes of LU177 is very dependant (as most treatments for cancer) on the stage in witch the diagnosis is made. The sooner the better.
In another string on this forum I wrote more on the LU177 and included some links on the subject.
Hopefully the information there can be of help to you.

http://cancerforums.net/viewtopic.php?t=14249

I wish you and your sister al the best.

@ the forum in general

It is with mixed feelings that I write this update.

On one hand it is with sadness, on the other hand the relieve that his suffering has ended. Last week the husband I spoke of in my earlier posting has died.

Our friend was already to weak and had to be transported by ambulance and was only able to attend part of the ceremony held in his honour.
She has today officialy asked here GP to start proceedings on her "final request".

A decision, how difficult to deal with and how awfully we'll mis her, we can understand and respect. Certainly taking in account the horrid "example" that was given to her this week.

So this week has been a horrific emotional roller coaster ride. The only good thing that has come out of it, is that where I spoke of an almost mature son earlier on, he has proved himself, us and most importantly his parents to be a man to be proud of!

krot · New User Joined: 23 Sep 2009 Posts: 7

The nightmare has ended. Yesterday our friend died peacefully.

I sure hope there is truth in "time will heal all wounds".

Since there is no reason to continue posting here, and by G.. I hope there'll never be one again, I'm signing off, wishing you all good luck.

Greetz Krot

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