Gallbladder Cancer - 2011

Lily50

westie66 said:

Peritoneal Carcinoma
HI Maudsie: I saw my oncologist today who was basically flummoxed that the chemo hadn't worked to eliminate or slow down the nodules on the peritonium. He is scheduling another MRI (I had one in December ) to compare results from the CT scan (I will light up for sure!). I asked why no more chemo if in fact the nodules have multiplied even during chemo (my idea is to zap them again and again) but he said that there is nothing to be gained by doing that as the nodules appear to be resistant to the chemo (I was on GemCis for 6 cycles but at 75% dose). No "let's go the extra mile" from him! I noted on another discussion board that taxol and cisplatin were used for peritoneum carcinoma but by that time I was so discouraged my mind was numb. The only other thing I found out when I asked about lymph nodes (mine were never tested as I came into the system as an emergency patient after a horrid surgery that removed the gallbladder, tumour, and part of the liver laparoscopically), was that once you have soft tissue nodules it is assumed that cancer is in the lymph nodes. Yikes. In other words, he may have been telling me go home and wait to die!

However, that is not an option. But can't do much until the MRI. There is only one doctor in Canada who does the intra-peritoneum thing and he is in Calgary, Alberta, a long way from here. And he may only do it for colon cancer. I'll find out though as I'm from Calgary. Unfortunatley our medical systems don't go well between provinces let alone another country.

Not a great day!

Cheryl

Peritoneal Carcinoma
Hi Cheryl,

Sorry it is a bad day for you but remember we all can get thru the bad days when we talk about them. Tomorrow will be better!

Find an oncologist who will go that extra mile for you! Even if he is in Calgary then go for it if you can. You are stronger now if you have to travel since the chemo treatment is completed. You used to keep your students in line now get your doctor's in line!

Glad to hear that it isn't an option for you. Get the next MRI, do some more research and then go from there.

Yes, there can be options we just have to find them for ourselves.

Take Care
Lily

Lily50

JayRay said:

I Love Your Dog
Cheryl, Thanks for replying to my post. I am brand new to discussion boards and to using a computer. That's why my husband got me one. I have been sick the past week. I saw my oncologist yesterday. Driving for over 4 hours in a car when you feel lousy makes for a long day. The dr. thinks I might have strep throat although I don't know where I might have got it - my blood count shows I have an infection. Also the dr. said I have thrush so I am on meds for both. I feel my body is overwhelmed from the chemo and I don't know how to stay well. I try to eat well but it is hard when you don't feel good.
Well, I hope things are going better for you. I had to tell you that I love your Westie. I had a Westie for 15 years. He was the best dog. After he died, it took me over two years before I was ready to get another dog. Now I have a 5 yr. old golden retriever that loves to cuddle and I rescued a mixed breed terrier that is 3. He plays nonstop. I miss being able to go on walks with my buddies, but I still spend alot of time just loving them.
I like making pet scarfs so I can raise money for the local shelters. My dream is that one day Delaware will become a no kill state. Oh, I also have our queen cat who rules the house. Yes, I love animals. They have brought me joy all my life and they are good
medicine when I am feeling down. All my best to you, JayRay

Dogs and animals in general
Hi JayRay,

I had to comment about you having a golden retriever. My faithful dog DreamStarz was a red golden retriever and she was by my side every step of the way through my treatment. A very gentle and loving dog. She knew when I wasn't feeling well and would cuddle with me. She was always careful when jumping on me, she was light as a feather. I do believe that animals are very special creatures that God created for us to share our lives with.

I had her for a short 5 years and after my treatment was completed I was able to recognize that she wasn't feeling well. I'm sorry to say that she had cancer and we had to put her down. My daughter said she took my cancer from me. Don't know how true that is but you never know. I also at that time had a german shepard who was really my husband's dog who stepped right in and took her place with me. She is now my dog.

I also have a little terrier, pom mix who has only 3 legs. He is a spitfire and we love him very much.

Walking is very good exercise for you right now, even if it only to the end of the street. Take the little one for a small walk if you can, it will make you feel better.

Animals are so comforting no matter what they are. I think we almost need them sometimes more than they need us.

Take Care
Lily

klnh0126

My mom
I wrote a long entry explaining my mom and her diagnosis of gallbladder cancer only to find it didn't save or post. I can't write it again because time doesn't allow but I still want to find out if anyone with gallbladder cancer has had any problems with their ureters or kidneys? Long story short my mom has gallbladder cancer stage IV diagnosed in Oct of 09. She was not a surgical candidate and began aggressive chemo in Dec of 09. She did quite well and I firmly believe that is what kept this terrible disease in check. Last August she developed a urinary tract infection and then discovered her ureters were blocked but they couldn't find a reason for the blockage. Stents were needed to keep her kidneys functioning which became severely infection and had to be removed. Nephrostomy tubes were put in which run directly from her kidney through her back and lead to bags for the urine. It solves the kidney function problem but gives her frequent infections which keeps her off chemo. She has had chemo only 2 times since Sept. The medical team from Cleveland Clinic and University Hospitals of Cleveland feel chemo at this time is too risky but to me not doing chemo is a death sentence. Has anyone had a similar situation?

Thanks,
Karen

maudsie

westie66 said:

Peritoneal Carcinoma
HI Maudsie: I saw my oncologist today who was basically flummoxed that the chemo hadn't worked to eliminate or slow down the nodules on the peritonium. He is scheduling another MRI (I had one in December ) to compare results from the CT scan (I will light up for sure!). I asked why no more chemo if in fact the nodules have multiplied even during chemo (my idea is to zap them again and again) but he said that there is nothing to be gained by doing that as the nodules appear to be resistant to the chemo (I was on GemCis for 6 cycles but at 75% dose). No "let's go the extra mile" from him! I noted on another discussion board that taxol and cisplatin were used for peritoneum carcinoma but by that time I was so discouraged my mind was numb. The only other thing I found out when I asked about lymph nodes (mine were never tested as I came into the system as an emergency patient after a horrid surgery that removed the gallbladder, tumour, and part of the liver laparoscopically), was that once you have soft tissue nodules it is assumed that cancer is in the lymph nodes. Yikes. In other words, he may have been telling me go home and wait to die!

However, that is not an option. But can't do much until the MRI. There is only one doctor in Canada who does the intra-peritoneum thing and he is in Calgary, Alberta, a long way from here. And he may only do it for colon cancer. I'll find out though as I'm from Calgary. Unfortunatley our medical systems don't go well between provinces let alone another country.

Not a great day!

Cheryl

Cheryl
Hi Cheryl, I hope the days following your last post were better. First, when is your MRI scheduled? Come back after the results and we go from there! There are other chemo cocktails used for GB besides Gem/Cis. I have heard that after a while a cancer can to start to resist what has previously worked. So then you switch to something else. Xeloda. Tarceva. Shoot, I can't remember them all right now. I'd make you a list but I'd have to end this note to go back and find the others. It would have been nice if your doc had immediately suggested some other therapies. They are out there and they have worked. So when you see that guy next, you come armed with information on other therapies that you have found with some research. Challenge him. You are a fighter of the highest order, I have great faith. Looking forward to hearing from you next!
Maudsie

Lily50

klnh0126 said:

My mom
I wrote a long entry explaining my mom and her diagnosis of gallbladder cancer only to find it didn't save or post. I can't write it again because time doesn't allow but I still want to find out if anyone with gallbladder cancer has had any problems with their ureters or kidneys? Long story short my mom has gallbladder cancer stage IV diagnosed in Oct of 09. She was not a surgical candidate and began aggressive chemo in Dec of 09. She did quite well and I firmly believe that is what kept this terrible disease in check. Last August she developed a urinary tract infection and then discovered her ureters were blocked but they couldn't find a reason for the blockage. Stents were needed to keep her kidneys functioning which became severely infection and had to be removed. Nephrostomy tubes were put in which run directly from her kidney through her back and lead to bags for the urine. It solves the kidney function problem but gives her frequent infections which keeps her off chemo. She has had chemo only 2 times since Sept. The medical team from Cleveland Clinic and University Hospitals of Cleveland feel chemo at this time is too risky but to me not doing chemo is a death sentence. Has anyone had a similar situation?

Thanks,
Karen

Karen's Mom
Hi Karen,

Welcome to our group of fighters. What a great daughter you are to come to this board and ask for information regarding this disease. I too was diagnosed as Stage 4 inoperable in 2005. After aggressive chemothearpy I had what is called an Extended (radical) cholecystectomy surgery in 2006 even though originally I was told no surgery, then more chemothearpy in 2007. It is such an aggressive cancer that it does need to be treated aggressively. With this type of cancer many people have different situations that arise from not only the cancer but the chemo, as both create havoc within the body. Many people have had to have stents for differnt reasons and then were able to resume chemo when their bodies were able to handle it again. I wouldn't say that not receiving chemo at this time is a death sentence, it just may be more of a risk for her to receive it at this time. Many have had to take a break from it and then will carry on. You have to believe in your mom and the doctor's that are treating her, if not get second, third even fourth opinions. Patients have to be their own advocates for their healthcare or have someone that they trust to help them down this long road. A positive mindset is a must when facing this terrible disease. We are here for you and your mom.


P.S. I knew your Userid sounded familiar and I went back to check the original discussion thread for Gallbladder Stage 4 regarding your mom. I'm sorry to say that I missed your post that was directed to me, I apologize. I'm glad you came back to talk. That thread became unmanageable and things were getting overlooked, again I'm sorry. Let's start fresh.
Take Care

Lily

westie66

maudsie said:

Cheryl
Hi Cheryl, I hope the days following your last post were better. First, when is your MRI scheduled? Come back after the results and we go from there! There are other chemo cocktails used for GB besides Gem/Cis. I have heard that after a while a cancer can to start to resist what has previously worked. So then you switch to something else. Xeloda. Tarceva. Shoot, I can't remember them all right now. I'd make you a list but I'd have to end this note to go back and find the others. It would have been nice if your doc had immediately suggested some other therapies. They are out there and they have worked. So when you see that guy next, you come armed with information on other therapies that you have found with some research. Challenge him. You are a fighter of the highest order, I have great faith. Looking forward to hearing from you next!
Maudsie

Peritoneal Carcinoma/Gallbladder
Hi Maudsie: My MRI is tomorrow (Sunday) and I meet with the oncologist the following week to discuss results. In the meantime, I'm researching what other treatments there are/have been for this so I have something more to say at our meeting! I haven't heard from anyone that their gallbladder cancer was followed by peritoneal carcinoma but I'm pretty sure it is fairly common given the abdomen's "geography". Most of the information is on lymph nodes but now how to treat them. There is a specialist in Calgary who does the intra flush, but whether I'm eligible is a question given my age and the size of one/some of the nodules (1 cm). I'll keep you posted. Thanks!
Cheryl

4Marias

We Love Her Dearly
Hi Lily,

You are truly a blessing. Your positive attitude is a gift and I thank you for sharing it. My sister who lives in Canada was diagnosed with 2 primary cancer the gall bladder and bile duct in May 2010. Since then she has been operated on (removal of the gall bladder & bile duct). Some time in Nov she underwent chemo but stopped as it debilitated her. She started to hallucinate which made her want to stop it. She did not feel it was getting her better. It kept her in bed all day. Since then she has been seen by a kind palliative doctor who keeps track of her medicines and condition. It has helped her a lot in reducing the pain. In December she had some bloating in the stomach area and legs but thank God has been manageable. Her most recent condition has been her turning yellow and recently eating only once a day. She has been in bed recently likely due to her increasing back pain and pain medicines. Is there anything you can suggest for her to take in terms of diet or what she can do to relieve her or make her feel better? Some have mention soursop.

My prayers goes to all, Ann

Lily50

4Marias said:

We Love Her Dearly
Hi Lily,

You are truly a blessing. Your positive attitude is a gift and I thank you for sharing it. My sister who lives in Canada was diagnosed with 2 primary cancer the gall bladder and bile duct in May 2010. Since then she has been operated on (removal of the gall bladder & bile duct). Some time in Nov she underwent chemo but stopped as it debilitated her. She started to hallucinate which made her want to stop it. She did not feel it was getting her better. It kept her in bed all day. Since then she has been seen by a kind palliative doctor who keeps track of her medicines and condition. It has helped her a lot in reducing the pain. In December she had some bloating in the stomach area and legs but thank God has been manageable. Her most recent condition has been her turning yellow and recently eating only once a day. She has been in bed recently likely due to her increasing back pain and pain medicines. Is there anything you can suggest for her to take in terms of diet or what she can do to relieve her or make her feel better? Some have mention soursop.

My prayers goes to all, Ann

Ann's Sister
Hi Ann,

Welcome to our discussion thread. You will find that everyone who posts to these boards has a positive attitude about this disease, whether they are patients or caregivers that have completed treatment, are in the midst of treatment, or newly diagnosed. We are there for each other to support the fight against this terrible disease. Where does your sister live in Canada? There are a few Canadians that post on these boards (Cheryl,Jan, Murray, etc.). Having surgery in the beginning is a good thing. I'm sorry to hear that she has stopped the chemo treatment. I have never heard of anyone having hallucinations from chemo. That is a new one for me. Is she heavily medicated since she is in so much pain? If she is comfortable with the palliative doctor than that is a choice that she had made. No one should live their lives in such pain. Jaundice is pretty common with this type of cancer. Some have had to have stents put in their bile ducts due to a blockage, but since you stated they removed the bile duct I'm not sure if this is something that could be done for her. This can extend life and improve the quality of life. Does she have anyone with her at this time that can help support her in this journey? It is important to keep moving as that will help. I'm sure that she is depressed. Who wouldn't be? Mediation, yoga, eating healthy (fruits,vegtables, lean protein) helps. A lot of people say smoothies are the way to go and I agree with them. When you don't feel like eating drinking a smoothie is quite good or at least drinking Ensure or Boost because they have vitamins and minerals that the body needs. When you are undergoing chemo sour things seem to taste better, but since she isn't receiving chemo I don't know if that would apply.
Let us know how she is doing and we will try to help.
Take Care
Lily

westie66

4Marias said:

We Love Her Dearly
Hi Lily,

You are truly a blessing. Your positive attitude is a gift and I thank you for sharing it. My sister who lives in Canada was diagnosed with 2 primary cancer the gall bladder and bile duct in May 2010. Since then she has been operated on (removal of the gall bladder & bile duct). Some time in Nov she underwent chemo but stopped as it debilitated her. She started to hallucinate which made her want to stop it. She did not feel it was getting her better. It kept her in bed all day. Since then she has been seen by a kind palliative doctor who keeps track of her medicines and condition. It has helped her a lot in reducing the pain. In December she had some bloating in the stomach area and legs but thank God has been manageable. Her most recent condition has been her turning yellow and recently eating only once a day. She has been in bed recently likely due to her increasing back pain and pain medicines. Is there anything you can suggest for her to take in terms of diet or what she can do to relieve her or make her feel better? Some have mention soursop.

My prayers goes to all, Ann

Your Sister in Canada
Hi Ann: I am one of the "Canadians" on the website. I, too, was diagnosed with gallbladder cancer (Stage IV) in early 2010. I had surgery to remove the gallbladder, its tumour, and part of my liver. After 4 months last summer waiting for the open incision to heal, I started chemotherapy (from Sept 2010 to January 2011) in London, ON. I had cisplatin and gemititibine for two weeks, then one week "off". I never really had any problems with it, very little nausea, just occasional fatigue. Since the chemo regime ended, I feel very well although there is a possibility that I have some cancerous nodules on the peritoneum and omentum - I am seeing the oncologist tomorrow. What regime was your sister on and where did she get it? It may be that she could have had a reduced chemo "load" like I did (75%) or changed the chemicals. Did the surgeon remove the tumour in the gallbladder? Were other cancerous tissues observed? It seems odd to me that she had all these symptoms but removal of the bile duct can cause some of them. Jan, also from Canada, has a husband who has had bile duct problems since he was diagnosed with gallbladder cancer. Perhaps she can pass on some suggestions.

By the way, soursop is a tropical fruit that you can get in some grocery stores that cater to people who like to eat exotic fruits and vegetables. You can get it in Toronto for sure. You might tell your sister to try pawpaw pills (pawpaw grows in eastern North america including Ontario - the twigs are used, not the fruit). It is supposed to have some cancer-fighting properties.

Cheryl

bjs

Side effects
Hello all,
i have not posted for a while because I could not figure out how to post to this site. I hope that this one works! I have gallbladder cancer that has spread to my bile duct but no where else. The location makes it inoperable, but I am hoping that may change down the road. The surgeon did remove my gallbladder back in March. I am undergoing daily radiation for six weeks and taking Xeloda. I have done well with the radiation. However, the Xeloda has caused repeated bouts of hand/foot syndrome that necessitates stopping my chemo for a day or two then resuming at a lower dose. My chemo is oral and I started taking 3,000 mgs. a day and am now on 1,500 and only five days a week. Has anyone else had hand/foot syndrome and how did you treat it? I take 500 mgs. of vitamin B6 three times a day as my oncologist recommended but that does not seem to help.
Any tips would be most appreciated!
Betty

westie66

bjs said:

Side effects
Hello all,
i have not posted for a while because I could not figure out how to post to this site. I hope that this one works! I have gallbladder cancer that has spread to my bile duct but no where else. The location makes it inoperable, but I am hoping that may change down the road. The surgeon did remove my gallbladder back in March. I am undergoing daily radiation for six weeks and taking Xeloda. I have done well with the radiation. However, the Xeloda has caused repeated bouts of hand/foot syndrome that necessitates stopping my chemo for a day or two then resuming at a lower dose. My chemo is oral and I started taking 3,000 mgs. a day and am now on 1,500 and only five days a week. Has anyone else had hand/foot syndrome and how did you treat it? I take 500 mgs. of vitamin B6 three times a day as my oncologist recommended but that does not seem to help.
Any tips would be most appreciated!
Betty

hand/foot syndrome
Hi: Are you talking about peripheral neuropathy when you say hand/foot syndrome? If you mean numbness and tingling in hands and feet, check out the colerectral discussion boards as this is a common side effect in chemo for colon cancer when taking oxiliplatin and 5FU. If so, several things have been suggested such as alpha linoleic acid, L-glutamine, calcium/magnesium (in Canada given during chemo), and after chemo is over SAMe. If not, ignore!
Cheryl

Lily50

bjs said:

Side effects
Hello all,
i have not posted for a while because I could not figure out how to post to this site. I hope that this one works! I have gallbladder cancer that has spread to my bile duct but no where else. The location makes it inoperable, but I am hoping that may change down the road. The surgeon did remove my gallbladder back in March. I am undergoing daily radiation for six weeks and taking Xeloda. I have done well with the radiation. However, the Xeloda has caused repeated bouts of hand/foot syndrome that necessitates stopping my chemo for a day or two then resuming at a lower dose. My chemo is oral and I started taking 3,000 mgs. a day and am now on 1,500 and only five days a week. Has anyone else had hand/foot syndrome and how did you treat it? I take 500 mgs. of vitamin B6 three times a day as my oncologist recommended but that does not seem to help.
Any tips would be most appreciated!
Betty

Hand/Foot Syndrome also known as PPE
Hi Betty,

This is a common side effect of Xeloda from what I have heard. Doesn't happen to everyone that is taking that form of chemo but it does happen to some. Everybody is different.
The good news is that you have the best excuse in the world not to do dishes or cook. Heat and friction are the enemy right now. Have you tried placing the palms or bottoms of your feet on an ice pack or a bag of frozen peas? Alternate on and off for 15-20 minutes at a time. That might give you some relief along with Tylenol.
No lotions during treatment but in between treatments try Lubriderm, Udder Cream or Bag Balm. Many people swear by it.
Do a search on PPE for other discussions boards to read.
Hope this helps a little.
Take Care
Lily

bjs

westie66 said:

hand/foot syndrome
Hi: Are you talking about peripheral neuropathy when you say hand/foot syndrome? If you mean numbness and tingling in hands and feet, check out the colerectral discussion boards as this is a common side effect in chemo for colon cancer when taking oxiliplatin and 5FU. If so, several things have been suggested such as alpha linoleic acid, L-glutamine, calcium/magnesium (in Canada given during chemo), and after chemo is over SAMe. If not, ignore!
Cheryl

Thanks
Hi Cheryl,
Thanks so much for replying to my post. I know that you are coping with a lot right now. What i have experienced is not peripheral neuropathy but an inflammation and swelling of the hands and feet. It is a common side effect of Xeloda and can lead to permanent problems. It has necessitiated my oncologist lowering my doses of chemo and temporarily stopping it several times. Most material that I reviewed recommends using lanolin but I am allergic to it.
Thanks again and i hope that you are doing well in your treatment.
Betty

bjs

Lily50 said:

Hand/Foot Syndrome also known as PPE
Hi Betty,

This is a common side effect of Xeloda from what I have heard. Doesn't happen to everyone that is taking that form of chemo but it does happen to some. Everybody is different.
The good news is that you have the best excuse in the world not to do dishes or cook. Heat and friction are the enemy right now. Have you tried placing the palms or bottoms of your feet on an ice pack or a bag of frozen peas? Alternate on and off for 15-20 minutes at a time. That might give you some relief along with Tylenol.
No lotions during treatment but in between treatments try Lubriderm, Udder Cream or Bag Balm. Many people swear by it.
Do a search on PPE for other discussions boards to read.
Hope this helps a little.
Take Care
Lily

Thanks
Hi Lily,
Thanks so much! I have seen recommendations of Udder Cream and Bag balm but both seem to contain lanolin and i am allergic to it. My oncologist has reduced my dose of Xeloda to one half of what I took at the beginning and this week I did not get the hand/foot syndrome at all until a brief flare up yesterday. I no longer take chemo on weekends just on radiation days. Fortunately, i only have one week of radiation and chemo left before my month long break. After that, i will not be on Xeloda but on a different chemo administered by port for six months or so. That one should not cause the hand/foot issues, i am told, but I am sure that there will be other side effects. However, i am optimistic that all of this will work and give me many good years.
I have tried the ice and it helps. Thanks!
Betty

westie66

bjs said:

Thanks
Hi Cheryl,
Thanks so much for replying to my post. I know that you are coping with a lot right now. What i have experienced is not peripheral neuropathy but an inflammation and swelling of the hands and feet. It is a common side effect of Xeloda and can lead to permanent problems. It has necessitiated my oncologist lowering my doses of chemo and temporarily stopping it several times. Most material that I reviewed recommends using lanolin but I am allergic to it.
Thanks again and i hope that you are doing well in your treatment.
Betty

PPE
Hi Betty: I hadn't heard of PPE - now I know! However, the sensitivity issue seems similar as they are both in hands and feet and can be permanent. Not looking forward to it! I start treatment tomorrow. Good luck with your treatments.
Cheryl

Lily50

bjs said:

Thanks
Hi Lily,
Thanks so much! I have seen recommendations of Udder Cream and Bag balm but both seem to contain lanolin and i am allergic to it. My oncologist has reduced my dose of Xeloda to one half of what I took at the beginning and this week I did not get the hand/foot syndrome at all until a brief flare up yesterday. I no longer take chemo on weekends just on radiation days. Fortunately, i only have one week of radiation and chemo left before my month long break. After that, i will not be on Xeloda but on a different chemo administered by port for six months or so. That one should not cause the hand/foot issues, i am told, but I am sure that there will be other side effects. However, i am optimistic that all of this will work and give me many good years.
I have tried the ice and it helps. Thanks!
Betty

Non-Lanolin Lotions
Hi Betty,

Just wanted to share this with you, it might help. My daughter is also allergic to lanolin and has had eczema since she was a baby. We have found that Cetaphil Moisturizing Lotion worked well for her. It might be worth a try. It is a little more expensive but it was the only lotion we could find that didn't have lanolin in it. Sometimes the reduction needs to be done, because your body didn't like it.
Do you know yet what your new chemo cocktail will be? Have you already had your port inserted? You have to stay optimistic, because it will help you to beat this beast.
Also I have to tell you I love Seattle. I lived and worked in Renton for 3 years in the late 80's. It was so beautiful there.
Let's us know how it is going and stay strong!

Take Care
Lily

maudsie

bjs said:

Thanks
Hi Lily,
Thanks so much! I have seen recommendations of Udder Cream and Bag balm but both seem to contain lanolin and i am allergic to it. My oncologist has reduced my dose of Xeloda to one half of what I took at the beginning and this week I did not get the hand/foot syndrome at all until a brief flare up yesterday. I no longer take chemo on weekends just on radiation days. Fortunately, i only have one week of radiation and chemo left before my month long break. After that, i will not be on Xeloda but on a different chemo administered by port for six months or so. That one should not cause the hand/foot issues, i am told, but I am sure that there will be other side effects. However, i am optimistic that all of this will work and give me many good years.
I have tried the ice and it helps. Thanks!
Betty

Hi Betty
Hi, I'm Maudsie, and I have been a L&D nurse and mother/baby/postpartum nurse for years. I retired in 2006 at age 60.....and then less than 2 years later I was diagnosed with GBC. I had my gallbladder taken out and then subsequent surgery to remove some lymph and two wedges of liver. The spread to liver was contained in that small wedge and no other spread was detected .....now, almost three years since diagnosis, so far so good! like you, I started with Xeloda and radiation (both 5 days a week, mon-Fri) and, like you will, I then had chemo through a port. In my case I just received Gemzar (Gemcetibine). I see that now most people are getting a combo of Gemzar with cisplatin or oxcilliplatin. I am betting that you will receive something like this, and really, it's not too bad (remembering of course we are all different). An example of all being different: my oncologist warned me about the possibility of hand/foot syndrome with the Xeloda, but as it turned out, it was not a problem for me. However, if you are looking for a topical cream without lanolin: we had a cream for our new breast-feeding mothers who had sore nipples. We wanted to avoid lanolin-based products (bag balm, etc.) because of possible wool allergies (baby allergies especially). We used, and recommended, a product called "Lasinoh" which is available over the counter in most drug stores, I believe. Seems, however, that you are almost through with the xeloda (YAY!) so maybe this information will not be necessary for you. I thought still I'd mention it for others, not sure if it would help with the problem, maybe just alleviate it a bit.
Good luck to you, and keep in touch here!
Maudsie

klnh0126

Lily50 said:

Hand/Foot Syndrome also known as PPE
Hi Betty,

This is a common side effect of Xeloda from what I have heard. Doesn't happen to everyone that is taking that form of chemo but it does happen to some. Everybody is different.
The good news is that you have the best excuse in the world not to do dishes or cook. Heat and friction are the enemy right now. Have you tried placing the palms or bottoms of your feet on an ice pack or a bag of frozen peas? Alternate on and off for 15-20 minutes at a time. That might give you some relief along with Tylenol.
No lotions during treatment but in between treatments try Lubriderm, Udder Cream or Bag Balm. Many people swear by it.
Do a search on PPE for other discussions boards to read.
Hope this helps a little.
Take Care
Lily

Xeloda
Hi Lily

My mom just started Xeloda about 10 days ago. I was wondering why you said no lotion during treatment but only in between? I've been applying Udder cream about 4 times a day in hopes of avoiding the hand/foot syndrome. Am I doing this wrong? Just today she feels the bottom of her feet are getting tingly. Also, even with my mom's insurance the Xeloda is costing her a $525 copay. This is a definite hardship along with the other meds and copays for the million appointments and procedures she has. I'v been exploring the options of copay financial assistance and have found out something rather incredible. There is help out there for many but not if your cancer is gallbladder cancer. The many organizations actually exclude certain cancers. I was shocked. Does anyone know of financial help for gallbladder cancer patients?

My thoughts and prayers to all,
Karen

Lily50

klnh0126 said:

Xeloda
Hi Lily

My mom just started Xeloda about 10 days ago. I was wondering why you said no lotion during treatment but only in between? I've been applying Udder cream about 4 times a day in hopes of avoiding the hand/foot syndrome. Am I doing this wrong? Just today she feels the bottom of her feet are getting tingly. Also, even with my mom's insurance the Xeloda is costing her a $525 copay. This is a definite hardship along with the other meds and copays for the million appointments and procedures she has. I'v been exploring the options of copay financial assistance and have found out something rather incredible. There is help out there for many but not if your cancer is gallbladder cancer. The many organizations actually exclude certain cancers. I was shocked. Does anyone know of financial help for gallbladder cancer patients?

My thoughts and prayers to all,
Karen

Karen's Mom
Hi Karen,

You are not doing anything wrong, you are just trying to give your mom the best care possible. It is important to keep her skin moisturized with lotions so it doesn't dry out and crack. I was told that with the diagnosis of Hand and Foot Syndrome that the actual process of applying the lotin would cause friction and therefore not to do it during treatment.
It is possible that the tingly feeling that she has in bottom of her feet could be neuropathy. I had and still have it in my hands and feet. I take a supplement that my oncologist recomended. It is called L-Glutamine. I take 500mg twice a day and it really helped. I was able to take it all through treatment. Check with her oncologist and see if she can take it.
Yes, I know all too well that treatment is so very expensive. I am still paying off medical bills and will for quite a while. Gallbladder Cancer doesn't get the attention it needs to. So many times things aren't paid for even by the insurance companies because statistically this is not a disease with a high rate of success. Have you checked with your local ACS office? They might be able to guide you to resources that may be available. Also has your mother started paperwork for Social Security? Gallbladder Cancer has been added to the Compassionate Allowance Listing for expediated disability claims. Just an idea.

Let us know how she is doing.
Take Care
Lily

westie66

Lily50 said:

Karen's Mom
Hi Karen,

You are not doing anything wrong, you are just trying to give your mom the best care possible. It is important to keep her skin moisturized with lotions so it doesn't dry out and crack. I was told that with the diagnosis of Hand and Foot Syndrome that the actual process of applying the lotin would cause friction and therefore not to do it during treatment.
It is possible that the tingly feeling that she has in bottom of her feet could be neuropathy. I had and still have it in my hands and feet. I take a supplement that my oncologist recomended. It is called L-Glutamine. I take 500mg twice a day and it really helped. I was able to take it all through treatment. Check with her oncologist and see if she can take it.
Yes, I know all too well that treatment is so very expensive. I am still paying off medical bills and will for quite a while. Gallbladder Cancer doesn't get the attention it needs to. So many times things aren't paid for even by the insurance companies because statistically this is not a disease with a high rate of success. Have you checked with your local ACS office? They might be able to guide you to resources that may be available. Also has your mother started paperwork for Social Security? Gallbladder Cancer has been added to the Compassionate Allowance Listing for expediated disability claims. Just an idea.

Let us know how she is doing.
Take Care
Lily

Karen's Mom and CoPay
Hi: I found the same thing here in Ontario. There isn't a specific chemo regime for gallbladder cancer so you have to "use" treatments from other cancers like colon cancer. Because of that oxaliplatin which I am taking isn't covered by the government or by my private plan but would be if I had colon cancer. There are so few of us and no research and the research is way outdated. I don't know how to change that. I'm borrowing up to $30,000 from my retirement funds - hopefully it will be worth it! Surely there must be help somewhere (but I didn't find any).
Cheryl