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peritoneal carcinomatosis - please help

pascale
Posts: 17
Joined: Jun 2009

Hello all,
Advance apologies for the long-winded message.
I've been reading messages posted on the board for the past few months and they've been a great comfort to me in very dark times. My mother (who is 71) was diagnosed with mCRC in October 2007. She had a few hepatic mets (the largest was probably around 3cm) as well as peritoneal deposits and 4/10 lymph nodes involved. Although we didn't know it at the time, she also had one or two lung mets. She underwent a right hemicolectomy and wore a colostomy bag for a few months, at which time the hemicolectomy was reversed. She has gone through several sessions of chemo: six months of Folfiri/Avastin; four months of Xeloda (Avastin was discontinued halfway through the Xeloda because she developed a clot in her jugular vein); and, starting last October, Folfox4. Her most recent PET-CT showed continued activity in her liver and lung mets but, according to her oncologist, no new mets. I started her on a course of supplements prescribed by a naturopath in Atlanta GA (lots of fish oil, Vitamin D, antioxidants like CoQ10...)
Then, ten days ago, she was hospitalized after a failed colonoscopy and failed barium enema. There was an obstruction in her intestines (she had been in pain for months, but this pain usually went away after a course of antibiotics and disinfectants, and her oncologist was not concerned since she was on chemo and CT scans didn't show anything new). Surgeons opened her up, drained a large quantity of ascites out, and closed her up again, diagnosing peritoneal carcinomatosis and frozen abdomen. Strangely, she was still passing stool, and has continued to do so. She was put on a liquid diet for a few days but is still in a bit of pain. She is also suffering terribly from the drains placed in her side to drain the fluid (serum etc.) from her abdomen. The oncologist says she has to recover from surgery and at that time he plans to start her on Vectibix.
Ever since she was diagnosed, I have been communicating with surgical oncologists and radiologists in the US and Germany (we live in Egypt). Last summer we traveled to France and Switzerland because I had hoped someone would operate on her liver and lung mets. Unanimously, doctors have praised her oncologist's strategy and talked about an "advanced case" and an "unfortunate disease." At this point, I am starting to wonder how much longer my mother has left. I am four months pregnant and would have loved her to see her grandchild, but I don't know if this is going to happen and it's killing me. I feel so bad that she is suffering when I am not even able to tell her convincingly that she is going to get over this particular bad patch. I am also very frightened of the coming period. From what I have read, and I'm sorry to bring this up, dying of CRC is excruciating. I don't want her to be in pain and I need advice. Anything you can tell me would be appreciated.

AnneS
Posts: 27
Joined: Apr 2009

Dear Pascale.

I am a veterinary surgeon who is caring for my mother, who has advanced colon cancer. Sure, I can pop some stats on the table for your mum (as well as for my mum, 69), but you know what: I REFUSE to do so. Every patient is an individual, not a statistics. Also, noone on this Earth can provide you with a 'sell by date'. My mum has been 'on the way out' (according to 'helpful' stats and prophetic doctors) more times than I care to remember (last time was yesterday in fact, and it kills me every time, very hard to keep the faith and hope - not aided by Drs disagreing, depending on whether they see her on a 'good' day or a 'bad' day). But she keeps coming back up again and defying those odds.

It is, however, very important that your mum has adequate pain management. There is no need for her to suffer!! Is she in pain presently? On pain medication?

Hugs

Anne

pascale
Posts: 17
Joined: Jun 2009

Dear Anne,
It is so very hard to go through this, but things like your reply make it more bearable. My mum is on pain medication but not a proper system, if such a thing exists. Since she is currently in hospital the doctors have said she can have pain medication on demand, so she is being given Bethadine, Liometacin, and / or Perfalgan (sorry, these are the brand names used here, so I don't know if any of these are familiar to you. Basically Bethadine is the strongest, a morphine derivative if I understand correctly). Today she received an ampoule of Bethadine (diluted) directly in her port-cath and slept for six hours. She is still very drowsy but in pain. She woke up at one point and had some soup but vomited immediately, which might be due to the obstruction but could also be because of the pain meds. I am very very worried. As you say it's terribly hard to waver between thinking this is the end, having hope that it's not, and being terrified that things will get worse. I'm trying to take it one day at a time but even that is difficult.
Best wishes to you and your mum.
Pascale

AnneS
Posts: 27
Joined: Apr 2009

Dear Pascale,

I very much understand your fear. I never used to think of myself as a fearful person, I have traveled the World, often alone and in remote/unsettled regions, climbed mountains, skydived, worked as a hostess in Japan, you name it... but I feel undiluted, primal fear when it comes to my mother and her disease. The not knowing, the waiting, her discomfort. Full blown anxiety attacks. The emotional roller coaster. I have lost my car in a parking lot, more parking tickets than I care to recall etc etc. A headless chicken. I too try the 'one day at the time' approach but some days are easier than others (not many though).

But getting back to pain:

Just a little bit about pain management, as it was taught to me in vet school. It is always easier to manage pain pre-emptively, in other words before it occurs. Once you have a full blown pain episode, it requires a lot more to bring it under control. This requires a full pain management assessment, which in my experience and where I am (Belgium), is not done. When does the pain occur, what type of pain is it etc.

Is your mum in pain continously? If so, a slow release morphine solution (i.e. like a fentanyl patch) would probably be more adequate (I do not know what Bethadine is, tried googling it, but only came up with an Antiseptic solution... and that cannot be right, lol. Do you know what the active ingredient is??).
Perfalgan is basically a strong paracetamol, but I find it really useful in combination with opioids. I am not sure I understand why they are also giving a non steroidal anti-inflammatory (Liomethacin) ...this is not a drug that is commonly reached for when there are problems with the gastrointestinal tract, as it can cause bleeding (but I don't know your mum's case!!!).

My mum is on a Fentanyl patch, and she typically gets Perfalgan + Buscopan (anti-spasmodics) around four times daily, around an hour ahead of 'problem times'. For breakthrough pain I will again use a combo of Perfalgan, Buscopan or a subcut injection of morphine (depending on how she rates her pain for me on a scale of 1 to 10). I always have motilium ready for nausea (sublingual tablets). But people are different in what they need and how well they tolerate certain medications (i.e. kidney, liver functions are important too). My mum tolerates opioid medication pretty badly, and gets confused, disoriented very quickly if she is not dosed absolutely right (it is invariably a disaster when she is hospitalised, they keep giving her more and more opiods and she is still in pain, go figure.

Pascale, maybe it would be an idea to sit down the doctor and tell him/her all your concerns. Ask about pain management control. Ask about the obstruction (i.e. maybe she needs to go on to total parenteral nutrition to help her recovery). Ask about the vomiting. Write down your questions before your meeting (I find that if I don't I forget half of them). Write down the responses too.

Big hug to you and your family!!! And to your mum of course!!

Anne

Anne

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I know how hard it is not to worry about you mom, I know my 4 kids worry about me! I was diagnosed in Jan of this year at Stage 4 Colon Cancer with a tumor to the liver...My docrtor REFUSES to give me any kind of prognosis because she said there's too many people she though would never make it to even a liver surgery, and they have! she said she has seen wayyy to many miracles, and how medicine is not how it used to be, the technology and advancements they have now are amazing..I'm not sure how or what the drugs were that your mom is on, but it sure seems they could give her some more and keep her out of it...why can't they make her more comfortable? My husbands grandfather died of this disease because he QUIT, and was going to a local, rural hospital because he didn't want to take the long trips to the better cancer centers, but he was put on comfort care and passed away with no pain and while sleeping.

I think if a doctor told me I only had a certain amount of time to live like that, I'd go for more opinions (or did she? I'm sorry if I forgot...I do have chemo brain)....But I on Folfiri with the Avastin, have to 12 treatments, and just finished my 6th, and on my last treatment, my doctor told me the chemo had killed most of my cancer already, so she can hang in there and take the most aggressive treatments, I do get queasay, have never vomited, and do take really good anti-nausea drugs (Emend, Zofran, Compazine, and Dexsmethssone...and *ahem* a good old fashioned herbal remedy named maryjane....

But I hope you mom gets better, I was hospitalized twice, one with an infection because of an absessed wisdom tooth, and one because of a perforated colon (sigmond area) which the ER had to do emergency surgery on, or I could of been gone..the bowels were going into my belly, and I had the chief surgeon performing a midnight surgery on me, using 11 pints of sea water to even clean most of the cancer in my intestines, and bowels..it was a success, I have a temporary colostomy that I can get reversed, but probably won't because I'm scared of the surgery again, but so far, my doctor is amazed at how well I am doing, she's very good and a specialist in the colon area.

You have come to the right place for comfort and hope, I was very scared when I came here, but I will not wait and think about death everyday, hell, I could be in a car accident tomorrow for all I know, this illness may not be the death of me. But maybe you would benefit in some help, with talking to someone, and really you should always just live everyday like it will be your last, life's too short for everyone, and I do take anti-depressants and anti-anxiety meds which maybe would help you as well focus on the better thoughts. I enjoy life while I can, enjoy your mom, you never know she may be here another 30 years, you will meet people who have had it for years and years, and they're still with us, this isn't a death sentence, just a stupid disease that you must believe will not break you or your mom...keep a positive attitude and sense of humor :)

Hopefully your mom will ask for better meds, and feeling better!

Hugsss!
Donna

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

I'm so sorry to read about your mom's struggle with this disease. I lost my dad to a recurrance and mets of his colon cancer. He was dx'd with stage 3, two large tumors, and significant lymph involvement. One year of weekly chemo kept the disease at bay, but another year later, it was back in colon, liver and lungs. His attempt at chemo then was brief and unsuccessful.
After he stopped that chemo, he was referred to and managed by a team of palliative care professionals through a hospice program. I don't know if such care is readily available where you live, but it was key for my dad. Their expertise is comfort management; my dad was able to have liquid medicines put under his tongue, or compounded into a lotion that was applied to his wrists. He was comfortable and lucid until the night he passed away, despite not being able to eat anything but small bites of fruit. The pain management is crucial; if your mother is not comfortable, something needs to be different in her care. We were "lucky" to have such support and care during my dad's decline.
I'm sorry that you have to go through this at all, let alone at a time when you are looking forward to the birth of your own child.
Wishing you and your mom comfort and strength,
Judy

pascale
Posts: 17
Joined: Jun 2009

It makes such a difference to communicate with others who have personal experience of this disease. My mum's doctor is wonderful, but very slippery when it comes to discussing things like pain management. In a way, I'm grateful, because he insists on remaining optimistic and taking things one day at a time; but when it's late at night and I can't sleep and am panicking about helping her effectively, he's not of much comfort. So far, because my mum has been in pain from this most recent (exploratory) operation, no one has prescribed a regular pain management regimen. She gets pain medication on demand, and we are still working out what is best for her.

Anne, thank you so much for your advice about preventing pain before it occurs rather than controlling it when it's already happening! This has already proved invaluable, and my mum was actually able to sleep last night because we asked the nurse for her meds before she was actually in agony from the drain.

Shayenne, thank you for your words of encouragement. MJ is one of the weapons I'm keeping in the arsenal for later, although I'm worried that what we get here is not as pure as the varieties dispensed for medicinal use in Cali.

Judy, thank you for sharing your dad's story. That was of great comfort to me, and I plan to start talking to pain management specialists now, rather than looking for them when the need becomes urgent (hopefully a long time from now). I just needed to know that it's possible for people who have this type of cancer to pass comfortably. Thank you again.

I'm so glad I found this forum, and finally mustered the nerve to register rather than just reading about members' experiences. I wish you all courage and joy in your treatment, care-giving, and everyday lives. This is very hard, but talking to others in similar situations is a lifesaver.

Pascale

pascale
Posts: 17
Joined: Jun 2009

that the oncologist doesn't want to give her Fentanyl for the time being because he's worried it will block things up even more. Anne, does your mum have a problem with that? Does she have to take laxatives / stool softeners? And is she on TPN?

AnneS
Posts: 27
Joined: Apr 2009

Dear Pascale,

So glad that your mum could sleep last night!

Opioids and their derivatives commonly cause constipation, and people are routinely prescribed laxatives to prevent this side effect. My mum has not once been constipated (in fact she has diarrea), so it doesn't apply to everyone. Did you find out what the active ingredient is in Bethadine?

Also, ask him what kind of blockage he is talking about? Is there a tumor present? How does it block the intestines (inside or outside?). Is it from adhesions from a previous surgery?

It is great that he is positive! But tell him how much you worry and that you need him to be more specific and answer your questions (ask him why your mother cannot have laxatives if he is worried re constipation - and if he is worried about this, why is he not worried about 'Bethadine'). And I think someone already mentioned this: get a second opinion if you can. I know this is easier said than done when she is lying in hospital (been there, made an appointment to see someone and went with my mother's medical files). I learned throughout this process to trust my gut and fire/hire as I see fit. I am not in a popularity contest, but here to make sure my mother gets the best care.

TPN: my mother is starting this tomorrow (she has already been on in a couple of times in hospital, but now are doing it at home as she is struggling to get enough calories in a day); all the admin had to be sorted out regarding this, due to the high risk of sepsis associated with administering TPN. Notably, the nurses we have at home (i.e. come once daily, now will be increased to twice daily) are not trained in TPN administration and therefore have to be replaced, at least until they can do a course.

Hugs

Anne

pascale
Posts: 17
Joined: Jun 2009

Dear Anne,

It sounds like your mother is in very good hands... It sounds wrong to say she is lucky but she could be in the same situation and not have a daughter like you to take care of her.

Bethedine is a morphine derivative. For some reason -- perhaps because they are alternating painkillers and the doses are quite low -- the oncologist is not worried it will cause constipation. I also asked him about the Liomethacin causing bleeding and he said the doses were too low and she was taking it too sporadically for there to be a risk. You're absolutely right that if Bethedine is ok, Fentanyl should be as well, and I haven't yet been able to resolve the contradiction. I know that he didn't want to prescribe laxatives because she already had spasmodic pain, and when I asked him about stool softeners he said they were unnecessary for now. My mother is also on a semi-solid diet and her biggest problem right now is pain from the abdominal surgery and the drains in her side.

Do I sound confused yet? :)

The obstruction: there too, a bit of a mystery. Apparently she suffers from "frozen abdomen," which means the intestines are amalgamated, but there are no masses as such. This is caused by peritoneal carcinomatosis, and therefore should be dealt with through chemo / gene therapy. The surgeons were afraid to start cutting her up because they said it was not even possible to disengage enough for a colostomy. However, the blockage does not seem to be particularly active since she is passing stool quite normally.

I don't mind getting a second opinion (and a third, fourth, etc), and in fact I've spent the past year and nine months getting opinions from doctors abroad. All of them have agreed with the general outlines of the local oncologist's strategy. I totally agree with you that the priority is to get our mothers the best care possible. I used to be very timid and worried about upsetting people, and now I can be borderline rude and obnoxious! However, even a very assertive attitude does not always bring results.

What I want to do now is get in touch with a proper pain management specialist so that we have a plan for later. I will ask about Fentanyl and other options. Thank you for letting me vent, and giving me such good, encouraging advice. I feel more courageous now.

Hugs to you and your mum.

Pascale

AnneS
Posts: 27
Joined: Apr 2009

Dear Pascale,

I totally hear you re 'even when being obnoxious/rude' no results... lol. I also used to be worried about upsetting people!

Make no mistake: I am NOT impressed with the pain management protocols that I have seen in two (top of the range) hospitals here. Basically consists of a barrell of morphine and heaps of benzodiazepines (latter to keep patients nice and quiet). And Perfusalgan. It seems to be totally irrelevant whether a patient has serious side effects (i.e. confusion, significant somnolence etc) as is my mother's case. Nor that the more morphine she gets, the more pain she is in (could this be opiod induced hyperanalgesia??). Is the fact that she is elderly, anemic, hypothyroid etc taken into account. What about hydration status? I know that I bring a coherent, happy, clear, autonomous mother in, and a week later leave the hospital with a little old, bedridden confused lady (these are the times the Drs stand around shaking their heads, only to see her the next week considerably better...). So yeah.... not good. I too have been wanting to find a pain specialist. But this seems to be standard protocol here... which to me is totally unsatisfactory as it provides a very reduced quality of life for my mum.

Gawd, everything you tell me sounds so familiar. The lack of info, contradictory info.

I thought of taking mum to the US (many people on this board seem to report fantastic treatments and support), but this would also take her out of her own home. We'd have to rent a flat or stay in hotels, which isn't ideal either.

Maybe someone on the board knows of a good pain specialist.

Hugs back to you Pascale.

Anne

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