Gallbladder Cancer - 2011

westie66

maudsie said:

Monarch's question
Hello -- I have Stage II GBC -- and after resection and chemo and radiation and all that -- I initially also got back results that sound like your Mom's -- they didn't actually say "recurrance" but they DID say something like "possible recurrance" vs. residual inflammation (not exact quotes) -- I was of course worried but my oncologist assured me that this was almost CERTAINLY just inflammation that was being picked up on the scan, due to all the radiation and surgery in that exact area. And....turns out....he was correct: after total healing, that cloudy area is GONE. That is not to say that the area doesn't bear close monitoring, of course it does.
In your mother's case, since the questionable area is right along the liver margin that was cut away, I would want to know more about the area that WAS cut away during the resection: was cancer found there, at all, on the liver? If so, were the margins negative? (that is, no cancer cells found on the part of the tissue where the incision was made). This would be important information.

No Radiation
Hi Monarch: Don't know except that because the liver covers the gallbladder (which I no longer have) and part of the liver was removed, radiation wasn't an option. Maybe we don't have the equipment here to go in from another direction as someone else reported somewhere on this discussion board. But now I want to know if zapping the 6 nodules I have on the peritoneum (cancerous, at least one was that was cut out) is a possibility rather than surgery.
So, sorry, can't answer your question but I will ask again the next time I see the oncologist (in 2 wks - just had chemo yesterday).
Cheryl

Monarch

maudsie said:

Monarch's question
Hello -- I have Stage II GBC -- and after resection and chemo and radiation and all that -- I initially also got back results that sound like your Mom's -- they didn't actually say "recurrance" but they DID say something like "possible recurrance" vs. residual inflammation (not exact quotes) -- I was of course worried but my oncologist assured me that this was almost CERTAINLY just inflammation that was being picked up on the scan, due to all the radiation and surgery in that exact area. And....turns out....he was correct: after total healing, that cloudy area is GONE. That is not to say that the area doesn't bear close monitoring, of course it does.
In your mother's case, since the questionable area is right along the liver margin that was cut away, I would want to know more about the area that WAS cut away during the resection: was cancer found there, at all, on the liver? If so, were the margins negative? (that is, no cancer cells found on the part of the tissue where the incision was made). This would be important information.

Thanks for your reply,
Thanks for your reply, maudsie!

I'm glad to hear your experience with this. My mom is scheduled to have a fine need biopsy on Tuesday. I have mixed feelings about that. I'm glad we'll know definitively, but I don't want to cause any other problems. Her oncologist is very agressive and doesn't sit on anything.

Mom's cancer did not breach the gallbladder. The tumor was classified as a T2 - but the radiation oncologist actually terms it Stage 1. Oncologist stands by Stage 2. At any rate, the PET scans all came back clear. There was a "questionable" lymph node along the vena cava on the CT scan but nothing else. The surgeon is a master of his craft. He was able to get the lymph node and surrounding area. As a precaution, the did the liver resection (using ablation to seal the liver...which I believe is actually what the radiologist is commenting about in his report), took several lymph nodes (I believe it was 18 or 19), and all of the portal areas used in the initial gallbladder surgery. ALL pathology reports came back clear. All tissues and margins were negative. Even the lymph node and surrounding tissue from near the vena cava. There was no cancer found anywhere outside the gallbladder.

Chemo and radiation were done as "an insurance policy".

Again, thank you so very, very much. I wish you continued health.

Monarch

Jean160

Monarch said:

Thanks for your reply,
Thanks for your reply, maudsie!

I'm glad to hear your experience with this. My mom is scheduled to have a fine need biopsy on Tuesday. I have mixed feelings about that. I'm glad we'll know definitively, but I don't want to cause any other problems. Her oncologist is very agressive and doesn't sit on anything.

Mom's cancer did not breach the gallbladder. The tumor was classified as a T2 - but the radiation oncologist actually terms it Stage 1. Oncologist stands by Stage 2. At any rate, the PET scans all came back clear. There was a "questionable" lymph node along the vena cava on the CT scan but nothing else. The surgeon is a master of his craft. He was able to get the lymph node and surrounding area. As a precaution, the did the liver resection (using ablation to seal the liver...which I believe is actually what the radiologist is commenting about in his report), took several lymph nodes (I believe it was 18 or 19), and all of the portal areas used in the initial gallbladder surgery. ALL pathology reports came back clear. All tissues and margins were negative. Even the lymph node and surrounding tissue from near the vena cava. There was no cancer found anywhere outside the gallbladder.

Chemo and radiation were done as "an insurance policy".

Again, thank you so very, very much. I wish you continued health.

Monarch

gallbladder cancer
Hello to everyone who has been posting on this site. I started reading the posts in June of this year and it has given me great encouragement, as I was shocked to find out I had gallbladder cancer in March 2011. Gallbladder cancer is so rare, and the more I read the articles (so many based on old statistics), the more discouraged I got. Reading these posts helps me to know there are survivors out there!

I had a laproscopic cholecystectomy after having an abnormal ultrasound and CT scan. (I thought I had gallstones, but the scans showed “thickened gallbladder wall”, and “could not rule out carcinoma”). After seeing a surgeon, he reassured me that it was highly unlikely given how rare this was. However after my surgery, he called to say the path report showed a “well differentiated adenocarcinoma- a T2), with isolated tumor cells in a nearby lymph node. The tumor had not grown through the gallbladder wall. This seemed to originate from a polyp! I couldn’t believe it. He thought there were signs that it was early disease, but sent me to the local university hospital for a second surgery. The specialists pretty much told me that it is usually found late except for maybe 10% of cases, and they were not as encouraging. I had the second surgery that included a liver resection and removal of 10 lymph nodes. All tissue from the second surgery came back negative for cancer cells. My second surgeon still recommended adjunctive chemotherapy, but did not recommend radiation for me. I have just completed 6 cycles of chemo; cisplatum/gemcitabine. Of course I hated chemo, but was hoping for “no cell left behind”, and got through it. I am just now starting to get my energy back and feeling good.

I will have a follow up CT scan at the end of October, along with blood work to include CEAs and CA 19-9 (the tumor marker blood work has always been within normal limits, although they were not drawn prior to my first surgery. So...... I am hoping for good results, and trying to stay positive. I was 56 when this was diagnosed.

Did any of your doctors say what kind of tumor cells were growing (i.e fast growing or slow growing?). Has anyone been told of any gallbladder specific “target therapy” such as seems to be getting studied with other cancers? Even though I have talked to several surgery and oncology specialists (with experience in GI cancers), all seem to have very little personal experience in gallbladder cancers. My family has been very supportive and caring. Friends have been great too, but they don’t always know what to say. Some give me food supplements. For myself, I believe in exercise and healthy eating, but I don’t think I need excessive supplements.

Keeping positive and working on getting my life back. ...........
Jean

maudsie

Jean160 said:

gallbladder cancer
Hello to everyone who has been posting on this site. I started reading the posts in June of this year and it has given me great encouragement, as I was shocked to find out I had gallbladder cancer in March 2011. Gallbladder cancer is so rare, and the more I read the articles (so many based on old statistics), the more discouraged I got. Reading these posts helps me to know there are survivors out there!

I had a laproscopic cholecystectomy after having an abnormal ultrasound and CT scan. (I thought I had gallstones, but the scans showed “thickened gallbladder wall”, and “could not rule out carcinoma”). After seeing a surgeon, he reassured me that it was highly unlikely given how rare this was. However after my surgery, he called to say the path report showed a “well differentiated adenocarcinoma- a T2), with isolated tumor cells in a nearby lymph node. The tumor had not grown through the gallbladder wall. This seemed to originate from a polyp! I couldn’t believe it. He thought there were signs that it was early disease, but sent me to the local university hospital for a second surgery. The specialists pretty much told me that it is usually found late except for maybe 10% of cases, and they were not as encouraging. I had the second surgery that included a liver resection and removal of 10 lymph nodes. All tissue from the second surgery came back negative for cancer cells. My second surgeon still recommended adjunctive chemotherapy, but did not recommend radiation for me. I have just completed 6 cycles of chemo; cisplatum/gemcitabine. Of course I hated chemo, but was hoping for “no cell left behind”, and got through it. I am just now starting to get my energy back and feeling good.

I will have a follow up CT scan at the end of October, along with blood work to include CEAs and CA 19-9 (the tumor marker blood work has always been within normal limits, although they were not drawn prior to my first surgery. So...... I am hoping for good results, and trying to stay positive. I was 56 when this was diagnosed.

Did any of your doctors say what kind of tumor cells were growing (i.e fast growing or slow growing?). Has anyone been told of any gallbladder specific “target therapy” such as seems to be getting studied with other cancers? Even though I have talked to several surgery and oncology specialists (with experience in GI cancers), all seem to have very little personal experience in gallbladder cancers. My family has been very supportive and caring. Friends have been great too, but they don’t always know what to say. Some give me food supplements. For myself, I believe in exercise and healthy eating, but I don’t think I need excessive supplements.

Keeping positive and working on getting my life back. ...........
Jean

Hello Jean
Hi, I'm Maudsie, one of the semi-"regulars" here on csn. You do seem to be in the small group of people (hopefully I am included) who caught GBC fairly early. You have undergone all the right stuff, including precautionary measures. Now your job is to sit tight, try not to worry (ha ha) and get your periodic scans and blood tests. To your questions, I have not heard doctors mention "fast" versus "slow" cancer cells with GBC. All GBC is quite aggressive once outside the GB. However, usually early cancers have "well-differentiated" cells which is a positive sign, versus "moderately differentiated" or "poorly differentiated". The other cellular sign in the cell type, is it "adeno-sarcoma" which the vast majority are, or is it "papillary" which is rare but is actually less aggressive I think.
Targeted therapy is a BIG topic among oncologists, and strides have been made in some of the more widely-held cancers, like breast. I don't know what has begun in gene/targeted therapy for GBC. Yuck, probably not much, it's to rare so the money goes where the most people will benefit, I fear. It WILL happen for GBC, and even with conventional methods that we here on this forum are all too familiar with, the statistics are better and better all the time.
Your scan is coming up, and I am sure "scanxiety" is setting in. Try to relax! You have come a long way!
Maudsie

westie66

maudsie said:

Hello Jean
Hi, I'm Maudsie, one of the semi-"regulars" here on csn. You do seem to be in the small group of people (hopefully I am included) who caught GBC fairly early. You have undergone all the right stuff, including precautionary measures. Now your job is to sit tight, try not to worry (ha ha) and get your periodic scans and blood tests. To your questions, I have not heard doctors mention "fast" versus "slow" cancer cells with GBC. All GBC is quite aggressive once outside the GB. However, usually early cancers have "well-differentiated" cells which is a positive sign, versus "moderately differentiated" or "poorly differentiated". The other cellular sign in the cell type, is it "adeno-sarcoma" which the vast majority are, or is it "papillary" which is rare but is actually less aggressive I think.
Targeted therapy is a BIG topic among oncologists, and strides have been made in some of the more widely-held cancers, like breast. I don't know what has begun in gene/targeted therapy for GBC. Yuck, probably not much, it's to rare so the money goes where the most people will benefit, I fear. It WILL happen for GBC, and even with conventional methods that we here on this forum are all too familiar with, the statistics are better and better all the time.
Your scan is coming up, and I am sure "scanxiety" is setting in. Try to relax! You have come a long way!
Maudsie

Gallbladder Cancer
Hi Jean: I am another survivor so far and I have Stage IV gallbladder cancer. My tumour did penetrate the gallbladder wall and into the liver. I had surgery A pril 2010 to remove the gallbladder, its tumour, and part of the liver. Unfortunately the gallbladder tumour had "seeded" to the peritoneum. After 12 treatments of cisplatin/gemcitibine, I am now just finishing 12 treatments of oxaliplatin-irenotecan-5FU which may be stabilizing and even shrinking some of the 6 nodules I have on the peritoneum. What Maudsie says I believe to be correct - once outside the gallbladder, its tumour is more aggressive and that's where the oncologist and GI surgeons start to despair. There has been very little research done on gallbladder cancer (and even peritoneum cancer)because there are so few of us. I can't see why targetted chemo and/or radiation wouldn't work but ... . Anyways, I believe yours was caught in time and you're in good shape! Keep up a positive attitude.
Cheryl

Jean160

westie66 said:

Gallbladder Cancer
Hi Jean: I am another survivor so far and I have Stage IV gallbladder cancer. My tumour did penetrate the gallbladder wall and into the liver. I had surgery A pril 2010 to remove the gallbladder, its tumour, and part of the liver. Unfortunately the gallbladder tumour had "seeded" to the peritoneum. After 12 treatments of cisplatin/gemcitibine, I am now just finishing 12 treatments of oxaliplatin-irenotecan-5FU which may be stabilizing and even shrinking some of the 6 nodules I have on the peritoneum. What Maudsie says I believe to be correct - once outside the gallbladder, its tumour is more aggressive and that's where the oncologist and GI surgeons start to despair. There has been very little research done on gallbladder cancer (and even peritoneum cancer)because there are so few of us. I can't see why targetted chemo and/or radiation wouldn't work but ... . Anyways, I believe yours was caught in time and you're in good shape! Keep up a positive attitude.
Cheryl

gallbladder cancer
Thank you Cheryl and Maudsie, for your encouragement. It helps to hear other's stories. When I was doing chemo, I never met anyone else with gallbladder cancer. One thing I realized, though, was that I met many people with stage 4 cancers that were told their statistics were bad for survival; but there they were, sometimes many years later doing just fine. Even if they were still in need of chemo, they were getting along well.

I have worked as a nurse for many years, but it still was hard to experience some of these treatments myself, maybe because I knew some of the nasty side effects. Other than my white blood count that kept going down (had to give myself neupogen shots), and of course significant nausea (great antinausea medicines these days even if they cause so much constipation), overall I did ok with the chemo. The main side effect I have now is tingling in my fingers and toes, which is very annoying. I don't know if that will go away; at least I am hoping that it improves.

I did get the results of my CT scan: no signs of cancer. Yeah! Of course I will be followed very closely because scans can not necessarily pick up small cells. They will repeat it in 3 months. By the way Maudsie, I love the term "scaniety". My blood work has returned to normal also. Of the different opinions and specialists that I saw, some did recommend radiation therapy as well. But my surgeon (the second, bigger surgery), did not. I highly respected his opinion as he seemed the most informed. If the tissue samples had showed remaining cancer, he would have recommended it. However, radiation therapy has its issues also, and has not proven to be necessarily curative. I guess we are back to the fact that there is less research in gallbladder specific cancer area, and each case has to be looked at individually.

I will put all of you on this forum on my prayer list. We are not statistics, but individuals with our own treatment; much of it getting better as specialist have more experience! Take care!

westie66

Jean160 said:

gallbladder cancer
Thank you Cheryl and Maudsie, for your encouragement. It helps to hear other's stories. When I was doing chemo, I never met anyone else with gallbladder cancer. One thing I realized, though, was that I met many people with stage 4 cancers that were told their statistics were bad for survival; but there they were, sometimes many years later doing just fine. Even if they were still in need of chemo, they were getting along well.

I have worked as a nurse for many years, but it still was hard to experience some of these treatments myself, maybe because I knew some of the nasty side effects. Other than my white blood count that kept going down (had to give myself neupogen shots), and of course significant nausea (great antinausea medicines these days even if they cause so much constipation), overall I did ok with the chemo. The main side effect I have now is tingling in my fingers and toes, which is very annoying. I don't know if that will go away; at least I am hoping that it improves.

I did get the results of my CT scan: no signs of cancer. Yeah! Of course I will be followed very closely because scans can not necessarily pick up small cells. They will repeat it in 3 months. By the way Maudsie, I love the term "scaniety". My blood work has returned to normal also. Of the different opinions and specialists that I saw, some did recommend radiation therapy as well. But my surgeon (the second, bigger surgery), did not. I highly respected his opinion as he seemed the most informed. If the tissue samples had showed remaining cancer, he would have recommended it. However, radiation therapy has its issues also, and has not proven to be necessarily curative. I guess we are back to the fact that there is less research in gallbladder specific cancer area, and each case has to be looked at individually.

I will put all of you on this forum on my prayer list. We are not statistics, but individuals with our own treatment; much of it getting better as specialist have more experience! Take care!

Gallbladder Cancer
Hi Jean: Well, that is very very very good news indeed! I think the stats need to change. I did hear another good news story this morning when I was doing chemo. The oncology nurse told me there was another patient at the cancer centre who had gallbladder cancer; she had the surgery, had the chemo, and now is cancer free and fine after at least 4 years. She had the same chemo regime I had. I love good news stories - keep them coming!
Cheryl

Monarch

What to do...
Hi everyone,

First an update...Mom had her biopsy and everything came back clear. As we had suspected, the radiologist was looking at the ablated area of the liver. Better to know than to question though. We got the results we were hoping and praying for.

Mom's tumor was classified as T2,N0,M0. The oncologist staged her at Stage 2. The radiological oncologist stages her at Stage 1. She had a liver resection and several lymph nodes removed. All pathology reports came back clear. She had "insurance" continuous infusion 5FU and radiation.

The oncologist is now asking her to consider a round of Gemzar/Oxaliplatin. I asked about Cisplatin and he said that Oxa was better tolerated. From what I've read though, it seems like Oxa has a lot more side effects - and it says you can't go out in the cold, touch anything cold, eat/drink anything below room temp, etc if you take it. Given that winter is on its way, avoiding the cold will be a significant challenge.

Mom is still trying to decide what to do. No matter what, she won't have any more chemo until January as she needs to recover from the last 7 non-stop months.

If you've had Gem/Cis or Gem/Oxa, what side effects have you experienced? What made things better? What made things worse?

We are confused about how to proceed. The 5FU caused afib and a blood clot. So we're not sure that futher chemo at this time is the thing to do anyway. Of course we'd like to prevent anything that may occur down the road. But I'm wondering if Mom wouldn't be better off waiting and taking the additional chemo if it becomes necessary at a later date. Just not sure what to do... Any thoughts would be appreciated.

Best to all of you!

Thanks,

Monarch

Katie15576

Gallbladder Cancer - UK
Dear all,
My name's Katie and I live in the U.K. My father David, is 69. He was diagnosed with Gallbladder cancer in September. His sister had bowel cancer in the summer and my dad had loose stools for 6 or so weeks so my mum said he should get checked out. He had an investigation with a camera all around his bowel and they found an inflamed area in his transverse colon. After a number of different scans, they confirmed the primary cancer was Gallbladder and that it had spread to his liver and transverse colon. He saw a surgeon in the U.K. through our National Health Service. He is known to take on cases other surgeons won't. He said before my dad walked into his consultation room that he was going to say no to surgery based on his scan that morning. However, on meeting my father he said he would do it as he has no symptoms and is a very physically fit 69 year old. He said he had only preformed this radical surgery once and after recovering from the op for 6 months, the patients cancer came back and sadly he passed away 6 months later. After this information, we all took a weeks break in Cornwall to think about the options, chemo or radical surgery. My father decided to go for the best statistic for survival. The following week my father met with the chemo doctor and he read my father the letter that the surgeon wrote him and
he thought there was a 10% chance of not making it through the op and a 10% chance of success at this stage IV. It was decided that my father will begin chemo a week Tuesday. He will have one day a week for a cycle of I'm not sure how long. I'm so pleased he's having the same chemo cocktail as Lily and some other you other survivors of this rare cancer (Gemzar and Cisplatin). I should have mentioned my dad has squamous gallbladder cancer which is supposed to be really aggresive. So he has rare cancer within a rare cancer...We all have to be positive...it's the only way. We are praying that his tumors reduce to make the operation easier for all.

There is no support mechanism or network like this wonderful one in the U.K. I adore my father and want to give him as much positivity and hope as I can and I feel being in tough with brave people wherever they are in the world that are going through the same ordeal will really help.

Love and positive thoughts to you all,
Katie

Joan4444

Katie15576 said:

Gallbladder Cancer - UK
Dear all,
My name's Katie and I live in the U.K. My father David, is 69. He was diagnosed with Gallbladder cancer in September. His sister had bowel cancer in the summer and my dad had loose stools for 6 or so weeks so my mum said he should get checked out. He had an investigation with a camera all around his bowel and they found an inflamed area in his transverse colon. After a number of different scans, they confirmed the primary cancer was Gallbladder and that it had spread to his liver and transverse colon. He saw a surgeon in the U.K. through our National Health Service. He is known to take on cases other surgeons won't. He said before my dad walked into his consultation room that he was going to say no to surgery based on his scan that morning. However, on meeting my father he said he would do it as he has no symptoms and is a very physically fit 69 year old. He said he had only preformed this radical surgery once and after recovering from the op for 6 months, the patients cancer came back and sadly he passed away 6 months later. After this information, we all took a weeks break in Cornwall to think about the options, chemo or radical surgery. My father decided to go for the best statistic for survival. The following week my father met with the chemo doctor and he read my father the letter that the surgeon wrote him and
he thought there was a 10% chance of not making it through the op and a 10% chance of success at this stage IV. It was decided that my father will begin chemo a week Tuesday. He will have one day a week for a cycle of I'm not sure how long. I'm so pleased he's having the same chemo cocktail as Lily and some other you other survivors of this rare cancer (Gemzar and Cisplatin). I should have mentioned my dad has squamous gallbladder cancer which is supposed to be really aggresive. So he has rare cancer within a rare cancer...We all have to be positive...it's the only way. We are praying that his tumors reduce to make the operation easier for all.

There is no support mechanism or network like this wonderful one in the U.K. I adore my father and want to give him as much positivity and hope as I can and I feel being in tough with brave people wherever they are in the world that are going through the same ordeal will really help.

Love and positive thoughts to you all,
Katie

New member
I just found this discussion board tonight and have been reading it for more than an hour. As many other newbies have said, this is a tremendous resource. I haven't yet encountered any other people who have gallbladder cancer, and the statistics in medical journal articles and elsewhere are terrifying. It's wonderful to find a place where survivors gather.

I was diagnosed on August 1, 2011, following a laparoscopic gallbladder removal. The cancer had spread to the liver in the form of three tumors, all within a couple of inches of where the gallbladder had been. Although it was fairly limited in scope, it was classified as Stage IV because at least one of the tumors was almost certainly not the result of direct extension. I had surgery at Memorial Sloan-Kettering in New York on August 26 to remove the entire right lobe and part of the left lobe of the liver. The surgeon found nothing in the lymph nodes and got clear margins, but I am having GEMOX chemo because of the likelihood that the cancer has metastasized or has seeded elsewhere. I was thinking of joining a clinical trial at Penn,but a post-op CT scan on October 13 showed no evidence of cancer, so I wasn't eligible. (I have never been so happy to flunk out of anything!!) The treatments are every other week; I've had two of them and am scheduled for the third on Friday. The first one produced almost no side effects, but the second one knocked me sideways for a few days.

Several people have mentioned fatigue and peripheral neuropathy, but has anyone else who's on GEMOX experienced difficulty swallowing, headache, or earache? I'd be interested to know what you did about it and what the oncologists said. My own oncologist told me that the side effects would be cumulative, so I was glad to see that some people on this thread found that they leveled out or even got easier to deal with over time.

Although this isn't the way I'd been planning to spend this autumn, I'm very grateful that the cancer was caught while it was still operable and that I'm able to get good care. Even the chemo, with all its unpleasantness, is well worth it. And special thanks to the people who are responsible for maintaining this discussion board -- I'm delighted to have found it.

Monarch

Joan4444 said:

New member
I just found this discussion board tonight and have been reading it for more than an hour. As many other newbies have said, this is a tremendous resource. I haven't yet encountered any other people who have gallbladder cancer, and the statistics in medical journal articles and elsewhere are terrifying. It's wonderful to find a place where survivors gather.

I was diagnosed on August 1, 2011, following a laparoscopic gallbladder removal. The cancer had spread to the liver in the form of three tumors, all within a couple of inches of where the gallbladder had been. Although it was fairly limited in scope, it was classified as Stage IV because at least one of the tumors was almost certainly not the result of direct extension. I had surgery at Memorial Sloan-Kettering in New York on August 26 to remove the entire right lobe and part of the left lobe of the liver. The surgeon found nothing in the lymph nodes and got clear margins, but I am having GEMOX chemo because of the likelihood that the cancer has metastasized or has seeded elsewhere. I was thinking of joining a clinical trial at Penn,but a post-op CT scan on October 13 showed no evidence of cancer, so I wasn't eligible. (I have never been so happy to flunk out of anything!!) The treatments are every other week; I've had two of them and am scheduled for the third on Friday. The first one produced almost no side effects, but the second one knocked me sideways for a few days.

Several people have mentioned fatigue and peripheral neuropathy, but has anyone else who's on GEMOX experienced difficulty swallowing, headache, or earache? I'd be interested to know what you did about it and what the oncologists said. My own oncologist told me that the side effects would be cumulative, so I was glad to see that some people on this thread found that they leveled out or even got easier to deal with over time.

Although this isn't the way I'd been planning to spend this autumn, I'm very grateful that the cancer was caught while it was still operable and that I'm able to get good care. Even the chemo, with all its unpleasantness, is well worth it. And special thanks to the people who are responsible for maintaining this discussion board -- I'm delighted to have found it.

Joan,
First and foremost, I
Joan,

First and foremost, I wish you the best in your treatment and your fight against this disease.

It has been recommended that my mom undergo a chemo course with Gem/Ox. She will either have that or Gem/Cis beginning in January. (She has already completed a round of continuous infusion 5FU and radiation.) I've been reading about Ox and it seems there are some harsh side effects from it. I will be interested to read what you experience as you progress through your course of treatment.

I have a question, I have read on several sites that if you are on Ox, you must avoid the cold for 5 days after treatment. It says that you should wear gloves if you are reaching into the fridge or freezer, not to eat or drink anything colder than room temp, and to always wear a hat/scarf/gloves, etc when out and about. Are you doing this?

If you have any advice/suggestions for my mom based on your experiece so far, I'd love to hear them.

Thank you. And again, my family's thoughts and prayers are with you.

Monarch

lirok

Monarch said:

Joan,
First and foremost, I
Joan,

First and foremost, I wish you the best in your treatment and your fight against this disease.

It has been recommended that my mom undergo a chemo course with Gem/Ox. She will either have that or Gem/Cis beginning in January. (She has already completed a round of continuous infusion 5FU and radiation.) I've been reading about Ox and it seems there are some harsh side effects from it. I will be interested to read what you experience as you progress through your course of treatment.

I have a question, I have read on several sites that if you are on Ox, you must avoid the cold for 5 days after treatment. It says that you should wear gloves if you are reaching into the fridge or freezer, not to eat or drink anything colder than room temp, and to always wear a hat/scarf/gloves, etc when out and about. Are you doing this?

If you have any advice/suggestions for my mom based on your experiece so far, I'd love to hear them.

Thank you. And again, my family's thoughts and prayers are with you.

Monarch

Baseline Scan Today
Well, after 6 weeks of rest I traveled back to Sloan Kettering this morning for my CT scan. This is my post radiation baseline scan to see how well the 28 treatments did. I suffered a severe case of "scanxiety" all week long and now I don't see my oncologist for 11 days so I will be on pins and needles. I am slowly getting my strength back along with my wits. I feel less and less like I am in a fog. Everything I was told about the radiation side effects was right on the money including the recuperative period. It takes alot of time and patience.

Anyway the best to all of you and good health to us all!!!!!!!!!!!

Rocky

Monarch

lirok said:

Baseline Scan Today
Well, after 6 weeks of rest I traveled back to Sloan Kettering this morning for my CT scan. This is my post radiation baseline scan to see how well the 28 treatments did. I suffered a severe case of "scanxiety" all week long and now I don't see my oncologist for 11 days so I will be on pins and needles. I am slowly getting my strength back along with my wits. I feel less and less like I am in a fog. Everything I was told about the radiation side effects was right on the money including the recuperative period. It takes alot of time and patience.

Anyway the best to all of you and good health to us all!!!!!!!!!!!

Rocky

Hi, Rocky! I've been
Hi, Rocky! I've been thinking about you and am glad to hear that your scan is complete. I'm counting on you getting excellent results when you see the oncologist. Like you've said, you and my mom are going to beat this monster. Remember that!

I've thought about you a lot recently. I've been doing some new research on the internet trying to get Mom all the info I can about the next chemo protocol she is going to have starting in January (the doc insists it will be further insurance...so we are going to invent in it!). I've been really - I mean REALLY - impressed with all I've read about Sloan Kettering. You are in excellent, excellent hands.

Hang in there and know my family's thoughts and prayers are with you. Let us know when you get the good news in 11 days!

Monarch

lirok

Monarch said:

Hi, Rocky! I've been
Hi, Rocky! I've been thinking about you and am glad to hear that your scan is complete. I'm counting on you getting excellent results when you see the oncologist. Like you've said, you and my mom are going to beat this monster. Remember that!

I've thought about you a lot recently. I've been doing some new research on the internet trying to get Mom all the info I can about the next chemo protocol she is going to have starting in January (the doc insists it will be further insurance...so we are going to invent in it!). I've been really - I mean REALLY - impressed with all I've read about Sloan Kettering. You are in excellent, excellent hands.

Hang in there and know my family's thoughts and prayers are with you. Let us know when you get the good news in 11 days!

Monarch

Thanks Monarch
I truly appreciate your thoughts and prayers. I send them right back your mom's way. You're right, the both of us are going to send this "thing" packing. Its funny but although I don't normally like seeing a doctor, whenever I walk through the doors of Sloan I somehow feel safe. I know that the chemo treatment your mom will be undertaking in January will only help. Thats the feeling I had when my oncologist wanted to continue chemo during radiation. Her reasoning was that it was working so why stop ?

Anyhow, again, best wishes to you and mom and know that 2012 will be a better year. Keep the positive vibes going. It really, really helps without a doubt.

Rocky

westie66

lirok said:

Thanks Monarch
I truly appreciate your thoughts and prayers. I send them right back your mom's way. You're right, the both of us are going to send this "thing" packing. Its funny but although I don't normally like seeing a doctor, whenever I walk through the doors of Sloan I somehow feel safe. I know that the chemo treatment your mom will be undertaking in January will only help. Thats the feeling I had when my oncologist wanted to continue chemo during radiation. Her reasoning was that it was working so why stop ?

Anyhow, again, best wishes to you and mom and know that 2012 will be a better year. Keep the positive vibes going. It really, really helps without a doubt.

Rocky

Oxaliplatin
Hi Rocky and Monarch: I've reported this several times but here goes again. I am on folfoxfiri as my chemo regime (oxaliplatin + irenotecan + 5FU pump) administered every 2 weeks. During and after my first treatment, I really reacted to the oxaliplatin - face felt like it was going to fall off, constricted throat, extreme cold intolerance, so my oncologist reduced the amount and infusion rate of the oxi during treatment. As well, I started taking these supplements from information I received on this website: L-Glutamine Fermented, 5 grams/day in juice; alpha lipoic acid capsules 3x/day; vitamin B6 1/day; calcium/magnesium 1/day. Since I have, I can eat ice cream right after treatment and don't need the gloves and scarf etc. But that is me. I see others on this website have tried this and it worked for them too but it may not work for you. I have heard that 1 or 2 cancer centres administer the L-Glutamine during chemo. Here you can request calcium/magnesium during infusion. Worth a try as I don't think anything here is harmful. As winter is coming here, I sure don't want the cold intolerance!
Cheryl

lirok

westie66 said:

Oxaliplatin
Hi Rocky and Monarch: I've reported this several times but here goes again. I am on folfoxfiri as my chemo regime (oxaliplatin + irenotecan + 5FU pump) administered every 2 weeks. During and after my first treatment, I really reacted to the oxaliplatin - face felt like it was going to fall off, constricted throat, extreme cold intolerance, so my oncologist reduced the amount and infusion rate of the oxi during treatment. As well, I started taking these supplements from information I received on this website: L-Glutamine Fermented, 5 grams/day in juice; alpha lipoic acid capsules 3x/day; vitamin B6 1/day; calcium/magnesium 1/day. Since I have, I can eat ice cream right after treatment and don't need the gloves and scarf etc. But that is me. I see others on this website have tried this and it worked for them too but it may not work for you. I have heard that 1 or 2 cancer centres administer the L-Glutamine during chemo. Here you can request calcium/magnesium during infusion. Worth a try as I don't think anything here is harmful. As winter is coming here, I sure don't want the cold intolerance!
Cheryl

Question about Fatigue and Pain
During the last few weeks I am experiencing some new things that have me concerned. I am tired ALL of the time. I could get 14 hours of sleep and wake up feeling exhausted. I am getting severe joint pain, have some problems walking and feel like I am in a fog. I am becoming forgetful. I have also had some several low grade fevers develop when I do even the slightest bit of activity. I went back to Sloan Kettering 2 weeks ago with a fever and they ran all tests which came back negative but they put me on a strong antibiotic which worked. I am finding it more and more difficult to just function through a normal day. My wife noticed it a week ago and I figured it would go away after my radiation ended (about 6 weeks ago) but it is getting worse and worse. Has anyone heard of or experienced this ? Going through treatments wasn't as bad as this.

haugy

lirok said:

Question about Fatigue and Pain
During the last few weeks I am experiencing some new things that have me concerned. I am tired ALL of the time. I could get 14 hours of sleep and wake up feeling exhausted. I am getting severe joint pain, have some problems walking and feel like I am in a fog. I am becoming forgetful. I have also had some several low grade fevers develop when I do even the slightest bit of activity. I went back to Sloan Kettering 2 weeks ago with a fever and they ran all tests which came back negative but they put me on a strong antibiotic which worked. I am finding it more and more difficult to just function through a normal day. My wife noticed it a week ago and I figured it would go away after my radiation ended (about 6 weeks ago) but it is getting worse and worse. Has anyone heard of or experienced this ? Going through treatments wasn't as bad as this.

fatigue
Hi Rocky,
I am 17 months from surgery for stage 3 b gall bladder cancer and had 6 cycles of gemcitabine/ cisplatin chemo and i did not have any radiation.
I did have a slight thyroid condition before my cancer diagnosis, but 6 months after i finished the chemo treatments i became very fatigued and it was found that my thyroid went totally out of whack, it is now back in check with a much stronger dose of synthroid.at this stage of recuperation i dont have pain but my energy / stamina is quite low .

Monarch

lirok said:

Question about Fatigue and Pain
During the last few weeks I am experiencing some new things that have me concerned. I am tired ALL of the time. I could get 14 hours of sleep and wake up feeling exhausted. I am getting severe joint pain, have some problems walking and feel like I am in a fog. I am becoming forgetful. I have also had some several low grade fevers develop when I do even the slightest bit of activity. I went back to Sloan Kettering 2 weeks ago with a fever and they ran all tests which came back negative but they put me on a strong antibiotic which worked. I am finding it more and more difficult to just function through a normal day. My wife noticed it a week ago and I figured it would go away after my radiation ended (about 6 weeks ago) but it is getting worse and worse. Has anyone heard of or experienced this ? Going through treatments wasn't as bad as this.

Coumadin?
Hey Rocky,

My mom has been really tired and has had increasing knee pain recently. I know that coumadin and lovenox both cause fatigue. And, I've come across info that they also cause joint pain.

I know you were taking lovenox. Not sure if you're still taking it and/or coumadin, but maybe that's part of the cause of your recent issues.

Mom is going to call the doc tomorrow. I'll let you know what they tell her about this.

I hope you get to feeling better. I'm sorry that you're having a rough go of it.

Charmi

Monarch

westie66 said:

Oxaliplatin
Hi Rocky and Monarch: I've reported this several times but here goes again. I am on folfoxfiri as my chemo regime (oxaliplatin + irenotecan + 5FU pump) administered every 2 weeks. During and after my first treatment, I really reacted to the oxaliplatin - face felt like it was going to fall off, constricted throat, extreme cold intolerance, so my oncologist reduced the amount and infusion rate of the oxi during treatment. As well, I started taking these supplements from information I received on this website: L-Glutamine Fermented, 5 grams/day in juice; alpha lipoic acid capsules 3x/day; vitamin B6 1/day; calcium/magnesium 1/day. Since I have, I can eat ice cream right after treatment and don't need the gloves and scarf etc. But that is me. I see others on this website have tried this and it worked for them too but it may not work for you. I have heard that 1 or 2 cancer centres administer the L-Glutamine during chemo. Here you can request calcium/magnesium during infusion. Worth a try as I don't think anything here is harmful. As winter is coming here, I sure don't want the cold intolerance!
Cheryl

Thanks for the info,
Thanks for the info, Cheryl.

We keep going back and forth between cis and oxa. I think we are leaning toward the oxa again as the reports of it's wonderful results are ever increasing. Still, the side effects of either choice worry Mom.

If only you knew what the "right" answer was at every turn...

Best wishes,

Charmi

Oneshot

lirok said:

Question about Fatigue and Pain
During the last few weeks I am experiencing some new things that have me concerned. I am tired ALL of the time. I could get 14 hours of sleep and wake up feeling exhausted. I am getting severe joint pain, have some problems walking and feel like I am in a fog. I am becoming forgetful. I have also had some several low grade fevers develop when I do even the slightest bit of activity. I went back to Sloan Kettering 2 weeks ago with a fever and they ran all tests which came back negative but they put me on a strong antibiotic which worked. I am finding it more and more difficult to just function through a normal day. My wife noticed it a week ago and I figured it would go away after my radiation ended (about 6 weeks ago) but it is getting worse and worse. Has anyone heard of or experienced this ? Going through treatments wasn't as bad as this.

Fatigue and pain issues
Hello Rocky,

I read your post and I think one of the other people gave you a good place to start . When they mentioned having your thyroid checked out. I had surgery in Sept. of 2008 for pancreatic cancer. I had radiation and chemo before the surgery and chemo after the surgery. I still have bouts with severe joint and muscle pain(not as much now days) as well as periodic severe pain that can accompany pancreatic cancer survivors. I always described it as being hit by a train and being drug down the tracks for a mile or so. Never any energy and always in a fog. Not to mention the pain everywhere! So yes I'm all to familiar with what you are asking. Like you, I also thought that, the treatment and surgery wasn't as bad as I would feel every waking moment afterwords.

There are a lot of factors and I'll try to keep it short as possible for now.
Like another post to you mentioned. Get your thyroid checked out. They can really take a hard hit from the rads and chemo in some cases. I finally had mine checked out after a couple of years of dealing with the low energy and constant "in a fog feeling."
Once my amount of thyroid medicine (Levothyroxine) was figured out. I got my energy level back up. Not exactly where I think it should be in my mind but, a far site better than where it had been and I'm in no way complaining!

As for the pain in the joints and muscles. NOTE: CHECK WITH YOUR DOCTORS ABOUT TAKING THIS! I heard both good and bad things about this med. but, it worked for me. I took Celebrex 200 mg. I no longer take it as of two months ago. I just said, " I think I can deal with it. I guess for lack of a better term I just got used to the joint and muscle pain. Exercise, as much as you possibly can but don't over do it!!! Build up you exercises slowly. In my case I was bed ridden for almost a year. So I had a long way to go to get my muscles anywhere close to what they used to be. I was told for every day in bed with no muscle usage. It would take seven days to make up for that one day in bed as far as muscles are concerned. Plus age and a few other things in my case.
Also when I get up in the mornings a good warm to hot as you can stand it shower helps ease the muscle and joint pain.

But , remember. We all find different things that work for each one of us. What works for me might not always work for someone else. So make sure and double check with your own doctor(s) to make sure it will be OK for your individual condition.

Like I said, I was trying to keep it short.

Take Care and GOD BLESS!

Oneshot