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Secondary Peritoneum Carcinoma from Gallbladder Cancer - Need Information

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

HI all: I have recently been diagnosed with peritoneum cancer that resulted after seeding from a gallbladder tumour (removed with surgery April 2010). My latest MRI (March 2011) shows 6 nodules on the upper right quadrant of the peritoneum and on the omentum. One nodule was excised April 2010 and was cancerous. I have had 6 cycles of chemotherapy (Cisplatin/Gemcitibine) September 2010 to January 2011 but this did not affect the nodules (although seemed to work for the post-op gallbladder cancer as no other organs are involved according to the MRI). From reading posts on the ovarian cancer and primary peritoneal cancer discussion boards, debulking surgery, intra-peritoneal chemotherapy (with heat), and regular chemotherapy using taxol and carboplatin (a milder form of cisplatin) are being used to treat peritoneum cancer. In Canada, where I am, only one surgeon does the debulking surgery and IP chemo in the entire country (in Calgary). You have to be interviewed to see if you would be a good candidate for the procedures. I haven't yet had my interview.

I have several questions:
(1) I am not clear on why peritoneum nodules cannot be removed surgically (the debulking surgery seems to involve removing the peritoenum, omentum, etc.). I read on one post that peritoneum nodules are a collection of cancer cells and not tumours but on an MRI they sure look like a tumour! Has anyone any information on this?
(2) I don't get a "feel" for how difficult the debulking surgery is. Can someone let me know? I'm not afraid of post-surgery pain but would like to know!
(3) I don't see posts from people with peritoneum cancer following gallbladder cancer although there is likely little difference once the peritoneum is affected. Is this true?

Thanks! Sorry this is so long but this is scary being in a place where so little is known about either peritoneum cancer or gallbladder cancer - it is very rare in Canada. And the gastro-intestinal and gynological oncologists don't seem to talk to each other. The gastro-intestinal oncologists view peritoneal cancer as terminal. I am not buying that!

Cheryl

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

Cheryl

Sorry to have to meet this way. I am from the ovarian cancer discussion board and you might want to check in there as ovarian cancer spreads to the peritoneum, too...sounds like you already know that. There are a few women posting on that discussion board who have primary peritoneal cancer (PPC). Maybe you have already been there.

I was diagnosed in August 2010 with stage 3c ovarian cancer that spread to the peritoneum. My MRI last month showed the cancer tumors were gone and the blood test (CA-125) was very low, too. There are cases where the PPC is treated like a chronic condition (like diabetes) may or may not be incurable but certainly treatable with chemo and long breaks in between treatments. The new approach is disease management with different combinations of chemo.

You might look into a clinical trial with ascorbic acid & conventional chemo that is happening in Canada--I can't remember where.

I think the de-bulking surgery is different for everyone but I don't think it is much worse than a regular hysterectomy. I had an intestinal infection after the de-bulking surgery that I acquired while in the hospital and had a LOT of intestinal pain post-operatively. So I cannot say how my recovery would have been without the infection.

You might do just as well with different chemotherapy and no surgery.

Best wishes to you.

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: Thank you so much for replying - I thought no one was ever going to do so! Yes, I have checked the Ovarian Cancer and PPC discussion boards and didn't get exactly the information I needed there but got a lot! The oh-so-interesting thing is that the gastro-intestinal oncologists and the ovarian oncologists seem to think about the cancerous peritoneal nodules in completely different ways - terminal vs chronic. I can't seem to convince them that the effects of much the same. I even talked to a technician when I had a scan on Tuesday who was at the Cancer Centre here and had lots of women with peritoneum cancerous nodules but from the ovarian stream - they were anywhere from 5 to 10 years "out" and still going. I can't get an appt with a gynocologist/oncologist until September however! It is interesting that very few gallbladder cancer folks report peritoneum involvement but from what I understand it is almost always there.

I'd be interested in finding out about the different chemo treatments used elsewhere. Here it was cisplatin and gemcitibine and I have a feeling there are other more useful ones I should try next. I'm still awaiting an interview with the debulking surgeon in Calgary, Canada (the only one who does it here in Canada).

I've already had an intestinal infection that was interpreted as iczchemic (spelling?) colitis - got it right after my first chemo treatment.

Cheryl

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

My omentum and affected areas of my peritoneum were removed, as were my ovaries, uterus, and parts of my colon and ileum. I had IP chemo, not heated. Since my primary was a GI-based tumor, I was treated IP with FUDR (a form of 5FU), and systemically with Folfox (5FU, Leucovorin, and Oxaliplatin). I've been fine since completing treatment 3 years ago.

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Thanks so much for the response. So by systemically do you mean regular IV chemo? I'll have to check if we get those chemos here - in Ontario I've heard we only have access to 6 different ones (includes cisplatin and gemcitibine and taxol) unfortunately. Where did you have the surgery done? There is only one place here in Canada that does it, in Calgary, so if I'm refused there ...
What cancer marker tests do you get? I have only had CA125 and I had to ask for that.
I'm so glad you haven't had any recurrences. Appendix cancer is very rare too. I know of one case in Saskatchewan and he had the debulking surgery in Calgary and is OK now too.
Cheryl

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

If you are on cisplatin, that's a platinum-based chemo which is pretty much the "standard of care" for the epitheial-type cancers.

Cisplatin has more side effects than carboplatin--they both have the problems with nausea/vomiting, neuropathy and bone marrow depression (low white count and anemia) but it tends to be less severe with carboplatin (except for the bone marrow effects). I am not very familiar with the gemcitibine chemo.

Good luck in your search for a gyn/onc surgeon who will work with you.

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: Thanks! All very good information I can use with my oncologist. Gemcitibine is called Gemzar in the States I think. I didn't have too many side effects from Cisplatin - only once did I have nausea (took several anti-nausea pills though) - except for low white blood cell counts for which I received Neulasta injections (4 in total).
Many women on the Ovarian Cancer discussion board, who have peritoneum nodules, have a chemo cocktail of taxol and carboplatin. I can't remember - were you ever on it and have you heard of anyone with gallbladder or appendix cancers being successful with it?
Thanks!
Cheryl

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

Yes, systemic is IV chemo, as opposed to the IP (IntraPeritoneal) chemo, which is localized - just in the peritoneal cavity. In the states, for GI cancers, the most common IV drugs are mixes including 5FU. Folfox (the mixture that I had) has 5FU, Leucovorin, and Oxaliplatin, another platinum drug.

My surgery was at Memorial Sloan Kettering Cancer Center in NYC.

They don't do the CA125, because this isn't ovarian or uterine cancer. They sort of follow my CEA (colo-rectal cancer marker) but not consistently, because it may not be a marker for my cancer. However, that is the only cancer marker that is tracked for me.

A;oce

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi abrub: I saw my oncologist today and he is recommending me for the exact combo you describe above - 5FU, Leucovorin, oxaliplatin plus one other one I forget its name. The 5FU would be administered via a PICC line and pouch that I take home - it lasts 46 hrs. The rest of the chemo is one day every 2 weeks. Unfortunately although the rest are covered one way or another, I will have to pay for the oxaliplatin ($2500/cycle plus "chair" costs of $100/hr) - it is not covered in Ontario unless you have colon cancer and my university plan doesn't cover it either (although I'm appealing that).

My question is this: the brochures they gave me and the warnings given to me by the oncology nurse today are quite frightening re the oxaliplatin. I'm not afraid of nausea or diarrhea or fatigue. The scary part was the feeling of suffocating if one comes in contact with cold. Suggestions were made to wear gloves and a face mask when opening the fridge, etc., i.e. keep warm! Tough when you live in CAnada! Did you experience this? Is there another chemical like oxaliplatin? Was yours administered in this way or in the regular IV way?

My 2nd question is a comment about the tumour markers. My oncologist said the exact same thing - there are no real markers for peritoneum cancer that originates not from the ovaries! But I had them done anyways (CA125 and CA19-9). I didn't get a CEA I don't think. You're the first person on this discussion board to say that ( but numbers that are within the normal range are so comforting!).

Thanks!

Cheryl

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

Cheryl, while the oxaliplatin is a notoriously nasty drug, it is very doable. Yes, I received in my bi-weekly day at the clinic, via IV. While there are other platinum based chemo drugs, oxaliplatin is its own devil.

My chemo was delivered via a chest port. I'd spend 6 hours at the clinic (we did an extra slow drip of the oxaliplatin, hoping to minimize side effects.) I'd get leucovorin, Avastin, and a 5FU bolus, before being sent home for the 46 hours on the pump.

Re. dealing with the cold: wear gloves to get things from the fridge. If the air is chilly, wear a scarf over your nose and mouth. Avoid eating or drinking cold foods/beverages. I never had the feeling of suffocation (and I was treated during the winter) but I've been told that while frightening, it passes quickly. I've also heard that drinking something cold can feel like drinking broken glass. Make sure anything you drink is room temp or slightly warm. (Don't go for hot, either.)

I used plastic flatware or wooden chopsticks for eating - metal was cold and painful to hold. I also couldn't lift cold china plates. My husband warmed up the car for me whenever we went anywhere.

Be sure to keep your hands and feet well moisturized. Interstingly, the oncs recommend bag balm and udderly smooth (cow udder formulations). Use them, or you'll have issues with skin splitting. Also rinse your mouth regularly (4+ times/day) with a salt-and baking soda mix (equal parts salt; baking soda - about 1 tsp/small cup of luke warm water.) You don't want mouth sores. Do this throughout the time you are on chemo, not just during your chemo days.

My tumor was of appendiceal origin, so they are loosely tracking my CEA (a colon-cancer marker.) For some people, it is indicative, for others, not. My dr at Memorial Sloan Kettering tracks only the CEA; my local onc at home does not track any cancer markers. However, as they are giving you chemo for colo-rectal cancer, you might want to ask re the CEA markers. This chemo combination is standard for stage 4 colo-rectal cancers.

Be sure to let your onc or chemo nurses know EVERYTHING that is going on - foot pain, nausea, diarrhea or constipation (chemo constipated me, so I had to be careful to take Senna. Most people get diarrhea.)

It's very scary. Ideally, you'll have minimal side effects. I had severe side effects, and couldn't complete. (I was also told that in my particular case, they would never know if the chemo had an effect, so I chose to quit, feeling that the known problems were not worth the questionable benefits.) I know many people, however, who were able to complete chemo. You can get lots of info regarding this chemo mix on the Colon Cancer Discussion board.

Sending hugs,
Alice

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: Thanks again. No, it wasn't Avastin unless it is called something different in Canada - I'll have to dig up the paperwork to find out (it started with an "i" - that's all I remember!). Thanks for all your information on Oxaliplatin - it won't be fun especially when I have to pay a lot for it! I hope it won't affect my colon (not having colon cancer) as the cisplatin did - I ended up in the hospital for 10 days with a bleeding colon (colitis) so they reduced my dose to 75%. I'll check the colon cancer discussion board. And thanks for letting me know what to do about getting mouth sores and splitting skin! I didn't get either with the cis/gem chemo thankfully so I will do the preventative thing. And I know just where to get bag balm (many women use it as a face cream - like Shania Twain!
Cheryl

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I have only just checked into these boards and have noticed your post. I have PPC and live in the UK. Sorry the cancer from your gall bladder escaped and went into the peritoneum. Here in the Uk they generally do not operate on peritoneum cancer because of the "seeding" and the difficulty of getting all of the tiny cancer cells. The best way to treat peritoneal cancer is by chemo that can circulate all over the peritoneum and "zap the little buggers"

The tumour marker (CA125)for peritoneal cancer is the same as ovarian cancer. The peritoneum is made up of exactly the same tissue as the ovaries so that is why they use the same tumour marker.

My oncologist did refer to my cancer as terminal but I think about it in a different way. I was diagnosed Nov 09 and after my seconf line treatment has just finished I am very well and feel good. I have now learnt to think of my cancer as chronic that can be managed with chemo.

The chemo I was both times is Carboplatin/taxol. In the UK it is classed as the 'gold standard' and it has certainly worked for me as it brought my numbers right down and the fluid build up I had around my lungs disappeared.

I am currently on a chemo break and intend to live my live to the fullest. Take care Tina xx

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Tina: I have been following your story and that of others on the primary peritoneum discussion board (and on the ovarian and colon cancer boards as well). Good for you for viewing this disease as chronic and not terminal. That's my view but I'm having trouble convincing my oncologist and gastro surgeon! The different schools of thought drive me crazy! It is interesting that you had carboplatin and taxol and that the peritoneum tissue is similar to ovarian tissue. I am trying to find out if nodules on the peritoneum that originated from the gallbladder tumour are the same histologically as those of primary peritoneum cancer. I can't seem to find an answer to that. One person on the discussion board suggests that different chemo regimes be followed rather than the same one all the time to "confuse" the cancer cells. Sounds good to me. My oncologist is going to try me on oxiciplatin (if I can afford the $20,000 bill! not free here but cisplatin is)with FOLFOX (5FU plus another chemical). There are some nasty side effects with the oxiciplatin I'm told. This is the standard for colon cancer which I don't have (yet). I'm going to tell him once again about the taxol (which is free here). Did you have involvement of the lymph nodes at all?
It is also interesting that in the UK surgery is not viewed as an option re the seeding effect - my view is to get the nodules cut out and wait for them to grow back again as they surely will from microscopic seeds that I suspect are everywhere, and not get the peritoneum surgery (I'm not eligible anyways). I don't know anyone here in Canada that has had this done. Even the debulking surgery talked about on the ovarian board is only done in one place and I didn't qualify.
I'd appreciate your comments on this. (and anyone else's). I see the oncologist on May 2 to go over the next stage of treatment.
Also did the chemo regime remove the nodules?
Thanks, Tina, and take care.
Cheryl

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

My appendix cancer adenocarcinoma burst and seeding throughout my peritoneum. Therefore, I was given FUDR (a metabolic variant of 5FU that can be used intraperitoneally) to kill the cells. I was told unequivocally that mine was not an ovarian variety, even tho the tumor was found encompassing my ovary. It was of appendiceal origin, and treated as such.

If the seeding is from an ovarian or uterine cancer, then the appropriate chemo would be used. Gallbladder makes me think GI tract, and therefore 5FU/Oxali (which is what I had for my systemic cancer.)

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi abrub: That's what I was told too but it is still a mystery to me why primary peritoneal carcinoma would be treated the same as ovarian cancer (I think Tina said because the tissues are similar) but that seeding from other gastro-intestinal organs would be treated like other tumours in the GI tract even though the nodules are "sitting" on the peritoneum. I'll go with what my oncologist recommends I guess as he is tops in his field here in Canada.
Was the 5FU/Oxali successful for you?
Re the price of oxali...in Canada. Every province has different "lists" of covered drugs. Most are covered but not oxal... in several provinces. I'm not sure why - perhaps because it is rather a new drug here. I think if you have colon cancer it is covered. I'm going to ask my oncologist if there is a replacement drug that is covered that will work as well. The cisplatin didn't work for the nodules but seemed to for the other organs.
Cheryl

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

but the systemic chemo (5FU/Oxali) was of questionable value for me. Many drs don't use any systemic chemo for the cancer I had because the feeling is that there is minimal blood supply, and systemic chemo is thus of questionable if any value. I was told up front the we would NEVER know if the 5FU/Oxali has any benefit for me. If my cancer never comes back, that won't be definitively attributed to the chemo; if it does come back, we won't know if the chemo delayed or affected its return. It was just done as "insurance" but as such, it was easier for me to discontinue it when the side effects became too troublesome. In my case, the IP (intraperitoneal) chemo of FUDR was much more important - bathing the areas from which they removed cancer in a form of 5FU that was more than 300 times more potent than what they could give systemically.

Thus I can't answer if the 5FU/Oxali worked for me. I think my surgery and IP is what has me doing so well now.

Alice

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Alice: I wish I could have had the surgery and the intraperitoneal chemo as I believe that is the best route, but I can't for whatever reason (only done by one doctor in all of Canada and I was refused). So, I'm going with the FOLFOX (has more letters but I can't remember them!), even if I have to pay for it, as the next best thing (until I can persuade them to cut out the nodules). I'm getting the PICC line put in on Monday (not looking forward to that! nor the side effects of the oxaliplatin).
Now to watch the election results (we are having national elections here today and it could be a tight race).
Thanks!
Cheryl

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Regarding surgery ........ it is viewed in my case that surgery will not offer any positive outcome for me as the cells are tiny and they could not possibly get them all. On the negative side may even cause the "seeded" cancer cells to spread rapidly once they begin any surgery.

I agree with the idea that using the same chemo over and over again ............ the cancer will eventually become resistent to it but the cocktail of carbo/taxol works for me so I will keep on with it until it stops working and then try a different one.

I am lucky as my cancer has not spread to any lymph nodes. The CT report just stated that there was no spread to any major organs, bones or lymph nodes.

I am amazed at how expensive the oxiciplatin is!!!!!!!!!!!! I suppose we are lucky in the UK as all of our treatment ............. chemo, CT scans, anti-sick meds, pre-chemo meds, hospital stays etc are all free and any other prescription meds I need are also free (if you have cancer all prescription meds are free)

Good luck with your oncologist on May 2nd. Take care Tina xx

katchris
Posts: 2
Joined: Jun 2011

I, also have gallbladder cancer that has come back in my peritoneum. I am doing chemo, oxaliplatin & gemzar. I'm miserable alot of the time. I had surgery in Nov. 2009. Did gemzar & cisplatin, also 5FU in a pump for 5 wks. while doing radiation. I went 9 months before it came back. Been told it will always come back. LOVELY!! Would like to hear back on how you are doing. I'm 56 & still working. Thanks. Kathy

lourdes726's picture
lourdes726
Posts: 12
Joined: Apr 2010

Hi Kathy,
I was reading your post and I was wondering what stage you were orginally diagnosed with in 2009. Did they find spread after the surgery? I am sorry to hear that you are suffering from this awful disease. I too was diagmosed with GB cancer last April. I had a T2 tumor and had a liver resection and then radiation and chemo. My lymph nodes were clear and I had clear margins. It has been a very hard year to say the least. I am 49 and I also still work. It is hard, but it keeps my mind off this disease.

Lourdes

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Kathi and Lourdes: How grateful I am to see some other folks who have received the "gift" of peritoneum cancerous nodules after gallbladder cancer! I was beginning to wonder if I was the only one out there. My story in brief is this: I had gallbladder surgery laproscopically April 15, 2010. It was day surgery. The surgeon removed the gallbladder, its tumour, which had protruded into the liver, and part of the liver (keep in mind - day surgery!). The next day I was back, taken immediately to intensive care and had more surgery (apparently I had an infection and loss of blood - almost died). The surgeon noted the nodules on the peritoneum and omentum but did not cut them out because other patients he has seen usually had many microscopic ones that could not be seen and most of the patients died! So, after waiting 5 months for the infection to be eliminated (and withi an incisional hernia to boot) I started chemo in October 2010 - cisplatin/gemcitibine - which continued until February. No other tumours showed up but the peritoneum nodules were still there. My CA125 number is well below normal thankfully as is my C19 (haven't had CEA done). So the oncologist is trying out a treatment used in metasticized colon cancer to the peritoneum - oxaliplatin (which I have to pay for $$$$)/irenotecan/leucovin/5FU (pump) and I'm on my 4th treatment. Lots of side effects but so far controllable. I have an MRi next week to see if anything is happening.
I was recommended for the peritoneal removal surgery plus HIPEC but was turned down - only 2 surgeons do it in canada and they are in calgary (I'm in Ontario).

I am now retired thankfully but doing well. That's my story! I'm so excited to find you two out there!

So, we have a new discussion board - Peritoneum Cancer - for you to check out. Just started.

Cheryl

lourdes726's picture
lourdes726
Posts: 12
Joined: Apr 2010

Hi Cheryl,
I do not have any spread of GB cancer and at this time I am cancer free. I am hoping for the best. I wanted to post as there are so few people with this disease. I would like to see more GB survivors post there stories. I do visit this forum often, although I don't usually post. I think it is wonderful that you are willing to share your story with others. Best of luck to you.

Lourdes

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Lourdes: Thanks for replying! There are several places on the Rare and other cancers devoted to Gallbladder cancer only. You might want to take a peek at those too.
Cheryl

maudsie
Posts: 54
Joined: May 2010

Hi, Maudsie here. I haven't been here for a while, and am just now reading, Cheryl, of the peritoneal involvement with your GBC. Is that a fairly new finding? I would think that since the cancer is of gallbladder origin, that the CA 19-9 test would be the most appropriate. Although we know how unreliable these markers are except for spotting a general trend. I think your new chemo regimen is very promising. I would love the idea of the intraperitoneal treatment for you, which brings the chemo directly face to face with the nodules in question....but that treatment is hard to find and hard to get, I believe. I am very interested, too, in what Alice had to say, and Kathy and Tina, too.
Well, just dropped by to say HI to you all, and Lourdes, too! I am doing fine, my three-year anniversary since diagnosis is on Friday (July 1) and I have a CT scan later in July....of course I am nervous about it, but MUCH less so, the farther out I get!!!

love and luck to all,

Maudsie

katchris
Posts: 2
Joined: Jun 2011

Hi again. My GB cancer was stage 2. It was in a lymph node, and I guess in my blood system to carry it to my peritoneum. The oxalplatin wasn't working as my ca19-9 was going up 100 points every 2 weeks. I'm back on gemzar & cisplatin, what I did before. Hope it works. My DR. said there is nothing else I can do. Can't believe that!! I'm not ready to give up the ship. I'm checking out other options & any input would be greatly appreciated. Hope all out there are doing well. Kathy

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Kathy: Gemzar (Gemcitibine in Canada) and Cisplatin didn't work for me, at least for the nodules on the peritoneum. I am on oxaliplatin/irenotecan/5FU/leucovin now (finished 6th treatment). This regime is used for colon cancer and has shown some success getting rid or slowing down the peritoneum spread with that cancer. My CA19-9 number is right in normal range. The peritoneum nodules haven't increased in number or size on this regime but they haven't shrunk much either. I've had them for at least 2 years. I think the intra-peritoneum chemo offers the best hope as the chemo gets in direct contact with the nodules. But as has been said, the treatment is hard to find (especially in Canada!). Peritoneal stripping is a very invasive surgery that seems to work well for the ovarian folks but hasn't had big success for gallbladder cancer folks. My gallbladder cancer was stage IV. I'm not a "nothing more can be done" believer either! Let me know what you find out!
Cheryl

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