Hi guys, it's a long time since I posted but I'm still keeping an eye on further developments in cancer research, which won't bring mom back but can benefit so many other people. I found this article in the Economist quite promising. Since pancreatic cancer is somewhat related to CC, maybe it will work for this tumor in the future too.

http://www.economist.com/news/science-a … make-right

Text:

PANCREATIC cancer is a dreadful disease. Even in rich countries, only about 4% of those diagnosed with it are still alive after five years. In America it is the third-most-common cause of cancer deaths among women, after lung and breast cancer; among men it is fourth, after lung, prostate and colorectal cancer. Dispiritingly, there has been little progress in treating it for more than a quarter of a century.

The reason pancreatic cancer is so deadly is that it metastasises quickly. This spreading of secondary tumours around the body damages other organs and has proved impossible to stop. But a group of researchers led by Claudia Gravekamp of the Albert Einstein College of Medicine, in New York, have an intriguing idea for changing that. As they describe in a paper in the Proceedings of the National Academy of Sciences, they plan to do it by infecting people with radioactive bacteria.

Dr Gravekamp came up with the idea following her discovery that weakened bacteria (specifically, a modified form of Listeria monocytogenes) she was using for other purposes in tumour-afflicted mice, and which were cleared from most of the animal’s body by its immune system over the course of a few days, remained in the tumours. This was thanks to the ability cancer cells evolve to suppress the immune system’s activities within their purview. Without that talent, cancers themselves would find they were under fatal assault from the immune system.

Dr Gravekamp and her colleagues therefore thought that their bacteria might be used to deliver anti-cancer agents specifically to tumours. At first, they considered using drugs. But on the advice of Ekaterina Dadachova, a radiologist and one of the paper’s authors, they eventually plumped for attaching a radioactive isotope of rhenium to their bugs.

Radioactive rhenium is commonly used in conventional radiotherapy. Dr Gravekamp’s hope was that, because the bugs stick around in the cancer, they would provide a novel way to solve radiotherapy’s biggest problem: ensuring that the tumour itself is zapped hard while minimising the amount of radiation hitting surrounding healthy tissue.

And that, more or less, is what happened. The bacteria tolerated their radioactive payloads with little complaint. In mice with pancreatic cancer, a course of several treatments with them killed off around 90% of metastasised tumours and made a notable dent in the original tumour as well. Admittedly, the technique’s aim was not perfect. The animals’ livers and kidneys, in particular, received high doses of radiation—higher, in fact, than those endured by the tumours. Dr Dadachova thinks this is because, as the immune system killed the Listeria, the radioactive remains of the bacteria were shipped to the liver to be broken down and recycled, while anything unusable was collected by the kidneys for excretion.

Fortunately this may not matter, for the high doses of radiation the liver and kidneys received did not seem to do them much damage. The tumours, by contrast, were fatally afflicted. That disparity is probably because of the way in which radiation kills. Its main effect is to break DNA molecules. Enough of these breaks overwhelm a cell’s ability to repair its DNA, causing it to die. The faster a cell is dividing, the more susceptible it is to this sort of damage—and a cancer is nothing more than a mass of cells that are dividing rapidly and uncontrollably.

As far as the researchers could divine, their proposed treatment causes few side-effects. In clinical trials in other contexts, people experimentally infected with a non-radioactive form of the weakened Listeria reported only mild and transient flu-like symptoms. Dr Dadachova’s mice, which got the full-strength, glow-in-the-dark version of the bacteria, seemed similarly unbothered.

Of course, effectiveness in mice is not the same as effectiveness in people. One quibble is that the number of mice given each variant of the treatment was small (just five), though the researchers argue that the strength of the effect they observed is enough to overcome worries about such sample sizes.

Dr Gravekamp and her colleagues are now trying to improve their treatment in mice, and are seeking sponsors for a trial in people. If that works, then three negatives (an infectious bacterium, a radioactive isotope and a nasty cancer) will have come together to produce a positive outcome—a piece of medical algebra that defies conventional mathematics.

2

(9 replies, posted in In Remembrance)

Well, that was it - at 5 am this Friday my mom passed away. I feel a strong need to give back to this forum, but since I'm nowhere near finding the cure for cancer (though I might try some biohacking in the future), I'll just describe the ordeal that my mother faced, so that perhaps some other patients and loved ones can in the future be prepared for what this disease might bring. Needless to say, every cancer story is a different one, so your mileage may (most likely will) vary:

September 2012: mom starts losing weight, thinks one of her diets has finally worked (she's been overweight for as long as I can remember, but not really obese)
November 2012: urine gets dark, she unfortunately ignores this symptom (maybe the billirrubin was already making her confused or perhaps she was starting to have mild dementia due to her age)
December 2012: jaundice shows up, GP orders ultrasound, which is inconclusive. Only after MRI and CT scans it's relatively clear that it's a cholangiocarcinoma, not operable according to two different doctors
01/02/2013: plastic stent inserted
01/09/2013: stent didn't work, decision to go for radiotherapy. Meanwhile mom gets weaker, sleeps a lot.
01/16/2013: ultrasound biopsy failed due to too much fluid. Mon starts suffering from incontinence.
02/01/2013: oncologist gives her one or two months, gastroenterologist suggests external drainage
02/03/2013: mom gets really week and refuses to eat at home, so I take her to the hospital
02/04/2013: mild pneumonia detected, treatment for infection started with antibiotics
02/05/2013: radiologist comes and starts preparation for external drainage
02/06/2013: she starts getting blood to be prepared for the drainage procedure, since she has severe anemia; severe loss of conscience, talks less and less
02/07/2013: stops eating food, taking only yogurt and shakes
02/08/2013: we cancel the drainage procedure since her conscience goes almost completely away. She starts being fed through a feeding tube
02/09/2013: last time she talks something other than "hi"
02/11/2013: oxygen added to help her breathe. Doctor suspects she's in pain and adds analgesics
02/12/2013: doctor adds morphine to her prescription. Blood pressure gets really low at night.
02/13/2013: starts having secretions pumped from her throat and lungs, her breathing sounds "bubbly". Urine needs to start getting drained too.
02/14/2013: doctor says she's in coma
02/15/2013: death due to acute respiratory failure

Though it might sound scary for someone who has never dealt with a cancer patient in the family, I'm afraid many will recognize some of these "steps" as being part of their history with their loved ones. I hope I don't bring too many bad memories, but putting this "on paper" is a way for me to cope with the terrible way in which the disease has progressed.

One last thing: as you may notice from the account of the facts above, CC has been for my mom a permanent downward spiral: there were no "ups and downs", it just kept getting worse and worse.

Still, I do wish sincerely that future patients do not go through this ordeal, though I'm afraid the technology is not there yet :-(

Hi all,

a short update: my mom is in a hospital since last Sunday. Her health has been deteriorating every day, so I expect it won't be long before she passes away. She should get the external drainage on Friday, but I'm not sure she'll make it until there. Tonight she would be receiving blood, since she's suffering from severe anemia. Perhaps this will give her a little boost, but it's hard being optimistic after seeing such a constant decline in her condition.

Anyway, I'm not expecting any advice - I was asked at the hospital to remind people around me to donate blood, so I'd like to take this opportunity to do so. That's the least I can do to honor her memory.

Once again thanks a lot for all the helpful information, and I hope I can contribute somehow to the cause in the future.

Best regards,
Marcos

Thanks a lot for the answers guys, always very good information !

In the end I decided to bring mom to the hospital, since she was so distant, with her eyes closed all the time, even while being awake, and refusing to take any solid food. First exams have diagnosed some kind of infection and declining kidney function.

I'm now really in doubt if and when she should get an IV infusion. I've just read an article which says that they're counterproductive for people in their last days, but I'm not sure if she has reached this stage yet. Anyway it's pretty scary to see things happening so fast - 20 days ago she was still walking, albeit slowly, and now she looks like a ghost.

Thank you so much for your support !

My mom has lost nearly 20 kg/50 pounds since this ordeal started. I've just bought this book "What to eat if you have cancer" (which was a great read BTW) and it tells a lot about the supplements that should be taken when someone is dealing with the disease. I had already bought a "general" multivitamin supplement, in which one capsule is supposed to give 100 % of the daily need for different vitamins. However, my mom is still much weaker than when she started taking it. I know that's normal considering the tumor's progression, but I wonder if I can do something about it. So my questions are:

- do you think the multivitamin capsules are less effective than other forms (like powder or shakes) ? Perhaps they're not absorbed as easily, I don't know... so far she's had no problem taking them, at least.
- since she has difficulty absorbing any nutrients, should I give her two capsules instead of one ? Or is there a risk of overusage that could, for instance, overstress her kidney or cause nausea ?
- has anyone tried concentrated digestive enzymes (the book mentions Metazyme and Similase) ? Are they any good ?

Though I do fear we're near the endgame (mom is sleeping really a lot today, but it's been raining non-stop so even I feel like taking a nap ;-) ), I don't want to give up hope just yet, specially considering that improving her food intake through supplements should not be too risky.

Thanks a lot for your help,
Marcos

Dear Pam,

thanks a lot for your kind words ! I've read your story in your posts and, being a parent myself, I get terrified with the idea of being in your position. I can only congratulate you both on your strength and willingness to help, and wish that a breakthrough comes in time for your daughter to get rid of this nightmare.

All the best,
Marcos

Marion,

you're right, she has always snored. But this doesn't really sound like snoring when I come to think of it - it sound more like she's having a disturbed sleep or even something like a trance state. Sometimes it sounds like she's talking in her sleep, but most often it hear like a deep sigh.

I wonder if such changed sleep patterns "come with the package" in CC. I don't remember if my father had it (he died of lung cancer), but then again every tumor is different, as it seems.

Hi all,

maybe I'm hijacking this thread, but I noticed my mother has somewhat the same problem. Right now she's sleeping, and her breathing alternates between a silent, "normal" pace (when I watch her I see that her breathing is regular) and what I would call a "dreamy" state, in which she seems to be snoring or somehow catching for breath - sometimes it even sounds like singing. Do you think it could be this so-called "death rattle" ?

As I mentioned in my introduction, her oncologist has given me today a pretty bad prognosis, so I'm trying to identifiy the signs that he may be right or not.

Dear Marion,

first of all thank you so much for your kind words of encouragement and your really helpful advice. Surely we're not physicians, but I'm really impressed with the amount of useful information I've been reading on this forum. It also kinda takes doctors out of their pedestals for me - by no means I want to dishonor the medical profession, but sometimes I feel they lack creativity, always following a sort of rehearsed script. Maybe I watched too much "House" anyway :-)

Now to your points: my suspicion (which in the end was confirmed by the doctors) is that the tumor has grown around the "branches" of the biliary tree inside the liver, so the stent has not had much of an effect. He did suggest an external drainage, so I called the oncologist again and he will forward my mother to a radiologist so that he checks if such a procedure is feasible. He even said that, in case it's successful, she might be eligible for radiotherapy again. So there's a (dim) glimmer of hope here.

I asked him about the paracentesis, and he said that it would make sense if she has a lot of fluid and/or abdominal pain. I've just noticed that her tummy is huge, and she did mention some discomfort in the area, so I do think it may be a good idea. However, I'll go after the external drainage first.

Once again thank you so much for you input !

Hi all,

somehow my first registration try didn't get through (I guess my home ISP is in the spammers list). I had given it up but since this website is such an amazing resource for patients and relatives of CC, I've tried again from work and this time it worked.

Unfortunately, meanwhile things went pretty much downhill with my mother. She's 76 and has been diagnosed last December with likely cholangiocarcinona. So I'll give a little recap on her story:

- started losing weight in September - thought it was good news (she's been always overweight)
- jaundice and dark urine started in the beginning of December
- first oncologist appointment before Christmas, he asked for CTs and a cholangio-MRI
- results checked on 27th, doctor says mostly likely CC (could be a diffuse hepatocarcinoma as well, but less likely). It's not resectable and suggests a stent
- stent inserted on January 2nd

The current situation is that the stent has clearly not worked, since her condition has deteriorated and there was no relief in the jaundice. Right now she's very frail, suffers from incontinence and is somewhat disorientated, but at least she feels no pain. An ultrasound-guided biopsy was not possible since she's got too much ascitic fluid in her liver,  and due to that I could not get an ok from the health insurance for radiotherapy.

I've been to her doctor today and he told me that she has only one or two months left, since her liver will soon stop working and she'll get into a coma. He said her only hope for (a slightly extended) survival is if her gastroenterologyst tries to replace the stent to see if the ducts are somehow unblocked. She's not fit enough for chemo (that's my assessment though, not his) and, with total billirubin of 17.2, apparently she can't take gemcitabin anyway. Her CA 19-9 is also at nearly 2000, I know this should not be considered alone but it looks pretty ugly to me anyway. The doc also says she should eat as much as she can, which is not much at the moment.

I have a few questions, perhaps I should post in the relevant subforuns, but since they're somehow "beginner" ones, I'll ask them here, since it's easier to answer them knowing the background I've just written above:

- based on the description of her condition, is the doctor's prognosis reasonable? is the progression until the end also supposed to be like this ?
- I know that hoping for a cure would be nothing short of a miracle, so are there any tips that you suggest to give her the best quality of life in the few months that she has left ? I asked the doc about vitamin B12 injections and he said they'd have no effects, so is there anything else I can do ? I'd really love if she could at least regain some strength, she feels so bored because she can't walk or leave the house.
- any nutrition tips or advice ?

Thanks a lot for your support and please add my mother to your prayers, she'll be very happy about it. Please bear with my writing mistakes, as English is not my first language.