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Gallbladder Cancer - 2012 (Any Stage)

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi everybody!

I'm starting a new discussion thread after having some frustrations posting today.
When the threads get too large we seem to have problems. Double posting, no posting, disconnect, etc. I don't know if you have experienced this or not, but it just drives me crazy.

Of course I will still check the other threads but if we all could move forward to this thread, it might be easier for us.

For those of you who don't know me I'm Lily and I am a six year survivor of Gallbladder Cancer Stage 4. I was given a very short time frame at time of diagnosis but everyone was wrong! You can read my story under my profile.
I have had the last laugh, continue to laugh and I'm doing well.

Post your story and let others know you have survived the battle, are in the midst of the battle, or are continuing on with your battle which may have changed from original diagnosis.

This is a terrible disease but you can beat it. Talk to us and we will try to help you.

Take Care
Lily

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Debbie,

Good to hear from you and thanks for updating us. The port is just a good thing.
L-Glutamine worked wonders for me. I highly recommend it. I took 1500 mg of L-Glutamin twice daily every day and still do. I found capsules at GNC(180) for $19.99
I didn't have molecular profiling done.
To post a new thread:
Under Rare & Other Cancers
Right before the Topic caption there is a small blue button
. Post new discussion topic
Select that and post.
I know how you feel about looking at those rolling eyes, my 23 yr old did it to me this morning about a question regarding my cell phone.

Take Care
Lily

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

What a great idea!
Sometimes the best ideas are the simple ones.
I tried it and not only is it easier, but you can check for spelling mistakes!
Thanks for sharing!

Lily

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Duplicate

Cynth89
Posts: 15
Joined: Jan 2012

Hello,

Yesterday Mum had her appointment with the specialist and he gave us some very bad news. He said it had spread to her liver,stomach and ovaries and is stage IV. I asked about if chemo can shrink it enough what about surgery at a later date and he said that wasn't possible because it has spread to distant parts of the body like the ovaries. He said that they would have to remove so many organs because the cancer has ''shed and just attached itself everywhere''.

We have an appointment with the oncologist for chemo on wednesday and an appointment with the oncologist for radiation on friday. They are looking to do radiation on her belly button and chemo on the gallbladder but they said they weren't going to target the ovaries.
If anyone has any information on different types of chemo and radiation and can give me an input into whethe you think they should also be doing something with the ovaries please let me know. They gave me a very short time frame for her yesterday and I can't imagine her not here.

Thanks,
Cynthia

Cynth89
Posts: 15
Joined: Jan 2012

Hello,

Yesterday Mum had her appointment with the specialist and he gave us some very bad news. He said it had spread to her liver,stomach and ovaries and is stage IV. I asked about if chemo can shrink it enough what about surgery at a later date and he said that wasn't possible because it has spread to distant parts of the body like the ovaries. He said that they would have to remove so many organs because the cancer has ''shed and just attached itself everywhere''.

We have an appointment with the oncologist for chemo on wednesday and an appointment with the oncologist for radiation on friday. They are looking to do radiation on her belly button and chemo on the gallbladder but they said they weren't going to target the ovaries.
If anyone has any information on different types of chemo and radiation and can give me an input into whethe you think they should also be doing something with the ovaries please let me know. They gave me a very short time frame for her yesterday and I can't imagine her not here.

Thanks,
Cynthia

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Cynthia,

Okay so yesterday was a rough day, I so sorry but those types of days are a given when you are fighting this terrible disease. You can't let what one specialist tells you determine the course of action that you need to do. There are other specialists out there who might have a different opinion. You need to break down things into more manageable pieces. I was in stage IV and it had spread to my liver and stomach too but not my ovaries. Maybe with chemo and radiation you will have enough success for surgery later. You have to have Hope & Faith and don't let any doctor take that away from you.

My original timeframe that I was given was 2 weeks, 2 months and at the longest 2 years. They aren't always right!

I'm praying for you and your Mum.
Take Care
Lily

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

Hi: I agree with Lily - she has mentored me for awhile. I was told the same thing yesterday in fact. I started out with Stage IV gallbladder cancer which spread to the liver so they cut out the gallbladder, the tumour, and part of the liver. Then it spread to the peritoneum and they gave me chemo (oxaliplatin + irenotecan + 5FU pump) for that, and then the latest scan said there is a small tumour on the liver. So when I said, but surely that can just be cut out right? they said, well, no, when it spreads then surgery would not be done. Huh? I said. I'm not about to give up because of a no. Unfortunately here in Canada we just can't go from one doctor to another and we don't have much private medical stuff. But, I'll not accept that! Nor should your mom.
Cheryl

Monarch
Posts: 36
Joined: Oct 2011

Hi Cheryl,

I'm glad you've got the fighting attitude! I hate to hear that something showed up on the scan. Your spirit has gotten you to where you are today and I know that you'll take that second breath and charge into this fight.

You are right. Do NOT accept the doc's word. There are so many people here - including you - who have taught a thing of two to the docs. Time for yours to learn another lesson.

Sending you positive thoughts and lots of prayers.

Charmi

Monarch
Posts: 36
Joined: Oct 2011

Cynthia,

You and your Mum has just gone through round one. I know it feels like you've been knocked down - but the fight doesn't end in round one.

Have you read Lily's full story? If not, look up tenacity in the dictionary because I'm sure they've posted her story there! Find her full story, print it off, and make sure your Mum reads it.

I know you feel like you've been punched in the gut, too. Take a deep breath. It's hard. Make a plan - and push. If you're offered an appt in a week, ask them to work you in the next day.

I can't tell you how many times I forged through the day - and cried myself to sleep at night. There is a time for tears - make sure you use it! The gal I see for accupuncture told me that tears are good. Let them flow. Tears are water - water is the shui in feng shui. Use the energy of those tears to regain your strength and move forward stronger.

My family's thoughts and prayers are with you. Keep us posted.

Prayers and positive thoughts for everyone here.

Charmi

LucyDoodle
Posts: 22
Joined: Jan 2012

Cynthia,
I am sorry you had bad news but like every one else says take a deep breath and start working on a plan.
Steve was told he had anything from 3 months to 8 months to a year and that surgery wasn't possible! Well here we are 8 months later and he ran 8 miles with me today and felt great.
We have good days and less good days, knowing he may need to change his chemo regime in the near future is scary because he has felt so well on his current regime. Like Charmi says there are some days that you have no idea how you get through but you do (I have also found the shower is a very good place to have a cry!).
I understand that all of this seems so scary and maybe even hopeless but take heart from all the wonderful people on this board and their stories which show so much determination and courage. It has helped me so much.
If chemotherapy is going to be a large part of Mums treatment it might be worth asking her oncologist about molecular profiling. Whilst they will undoubtedly start Mum on the standard treatments it is thought to be useful if and when they need to change regimes. Steve had it done and it has given our oncologist at Johns Hopkins some useful information.
I am thinking of you and your Mum.
Debbie

LucyDoodle
Posts: 22
Joined: Jan 2012

Hi Lily and Cheryl

Thanks for the information on L Glutamine and B6. Steve has started taking it so hopefully it will help. He is also going to try the B6 as his oncologist mentioned that as well.

Thank you both for helping me work out how to do a new post so that now I don't have to ask a teenager :)

Cheryl, I am sorry your scan wasn't as good as you hoped but from your posts I know the fight goes on! Sending positive thoughts your way.

Debbie

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Debbie,

You are welcome!
I’m so impressed that Steve ran 8 miles. Good for him! I’m glad that this chemo regime isn’t beating him up too much.
The secret is now out; crying in the shower was something I did for quite awhile. It can be very therapeutic. It is such a release of many emotions that I always felt better afterwards and felt like I could keep going.

Take Care
Lily

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

Hi all: If there is one thing I've now learned about having cancer - don't trust all of the scan results. I just went through about 15 scan reports (Cts and MRIs) and put the data on a spreadsheet. One spreadsheet is for the peritoneum cancer and the other spreadsheet is for the unidentified mass (or masses I should say) on the liver. Well, that was an eye opener! I noted so many inconsistencies and omissions. One radiologist even got the dates wrong in his/her comparison of one scan against past scans! The correct scan date was in 2010 but he/she used 2011 and that showed an increase in a mass when in fact there was a decrease! I presented one spreadsheet to my oncologist and he agreed with my analysis (as surprised he was at being presented with a spreadsheet!). Today I presented the liver scan information to my GP (who doesn't request the scans but should get copies - although she didn't!). We were horrified when we started going through them! The problem is - one needs a business manager, one person who oversees all of the others on your team and makes sure that all of the meaningful results are known to those that need to know! I have a science background so I can go through lots of numbers but even I didn't do that and it's my life. So, don't want to scare you all out there, but be very conscientious about going through your results completely (and there are likely lots of results to go through) and then make sure your doctors have done the same.
I'll keep you posted on my test results on Thursday. I think that is what keeps me going - anger at the system!!!!! I think a lot of it is because gallbladder and peritoneum cancers are so rare - you'd think that would be exciting to a doctor!
Cheryl

Cynth89
Posts: 15
Joined: Jan 2012

Hello All,
Thanks so much for all of your support! We are going have a chemo appt tomorrow morning with the chemo oncologist about different types of treatments so I was wondering if anyone could give me any information of chemo treatment that thehy had and what the side effects were.

i asked about if chemo shrinks the cancer enough surely surgery can be an option later on down the track but he said it's not because it has spread to the ovaries,if it had of stayed within the ballbladder,liver and stomach surgery may have been an option but because it has spread to distant parts of the body they can't operate.

I am hopefull that with chemo and possibly radiation to the stomach it can shrink the cancer and keep it from spreading.

Cheryl it is the same here in Australia, Mum is a public patient and we can't just go to different doctors and she doesn't have the money to go privately.I also aggree that you can't trust them. The cancer showed up in scans Mum had in March 2011 and it was never picked up until December 2011:(

Thank you all and will keep you's posted

Cynthia

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

HI Cynthia: Much the same words I heard - once it spreads to other parts of the body ...! Then when you read posts on this website, you realize that many cancer patients do get more surgery for those distant bits. I guess some surgeons/oncologists are more aggressive than others. One woman on the colon cancer board has only had surgery (once a year) - no chemo and another one has had 18 surgeries no chemo. I'm missing something here and wonder if it is the difference between public and private plans. I know here in Canada they will send you to the States if a treatment isn't available here and you can get insurance for the Mayo Clinic but I wouldn't be eligible as I already have cancer. That would be difficult in Australia given your closest neighbours are Papua New Guinea and New Zealand and they are far off.
It will be interesting what kind of chemo they use given the variety of organs. For ovarian cancer they usually use carboplatin and taxol but for gallbladder cancer they use cisplatin and gemcitibine and for stomach cancer - don't know maybe 5Fu pump.
I guess in the end I'd still rather have socialized medicine - I also have a private plan from my university whereby even dental work is covered until I die. So, there are upsides and downsides.
Please keep in touch on your mom.
Cheryl

Meg2003
Posts: 13
Joined: Jan 2012

Hello Lily,

My dad is a colon cancer survivor (for over 20 yrs now) and was having digestive issues so he was scheduled to have his gallbladder removed yesterday. Once the surgeon got in there he found spots on my dad's liver and abdominal wall so they changes their plans and did a biopsy.

Today we learned that it is in fact gallbladder cancer and it spread to his liver and rib cage and they say it's inoperable. He has not yet seen the oncologist, but will be doing so this week (we hope).

I was on a colon cancer discussion forum and someone there referred me to you. Can you give me some guidance as to what my parents should be asking the oncologist? Does anyone know what cancer centers specialize in this? We are located in the midwest and actually just moved here from the CA and are unaware of hich Cancer Centers are the best.

For a little background info; he had a liver panel done in November and all his levels were normal and a PET and CT Scan done a year ago which were clear.

My dad is only 62 and we need to give him some hope so he'll fight. He has grandkids (6-infant) who need him around as to my mom and I.

Thank you!

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

HI LIly and Meg: It was me, Lily, who recommended she talk to you on this discussion thread. I recommend an aggressive chemo treatment like you had, LIly, and perhaps check out the Mayo Clinic (is Minnesota in the mid-west? I'm a CAnadian so am hopeless!). A friend of mine with gallbladder cancer went there from CAnada and had wonderful aggressive treatment. But his cancer had not spread to the liver or rib cage. Mine may have spread to the liver, it certainly has spread to the peritoneum.
Cheryl

Meg2003
Posts: 13
Joined: Jan 2012

I think we've decided to go with Cancer Treatment Centers of America in Tulsa, I have not found anyone who had a single bad thing to say about it (everyone raves about it). He would receive most of his treatments there and they offer complimentary services that include a nutritionist, counselers (for patient and family, homeopathic meds to help deal with the side effects of the chemo.

Right now we're just trying to get him out of the hospital because the longer he's in there, the more depressed he gets. We're hoping to submit the forms tomorrow so they can get him in next week. As of right now, we don't even know what stage he is or if it has spread to his lymph nodes.

Thanks for the info.

parthgovil
Posts: 5
Joined: Jul 2011

Dear Cheryl,

Please try few things,
1. First thing in morning ( without cleansing ur mouth) drink about 1-1.5 ltrs of lukewarm water
2. Try taking in about 2-3 tsps of turmeric along with milk / pineapple juice during the day pref one tsp after each meal
3. Do pranayama ( yogic breathing - kapalbhati and anuloma vilom) start with 20-30 mins per day try taking to 4 hrs per day. This leads to improved oxygenation of the body at the cellular level. Cancer cells can't survive inan oxygenated environment.

Try these it certainly helps.

Regards

Parth

Monarch
Posts: 36
Joined: Oct 2011

Meg,

I hate that you've had to find us but I am so glad you did! This is a wonderful community where hope and knowledge is shared like nowhere else.

I was born and raised in the Chicago area. Mayo was always the go-to place for anything major.

From my research, there are 3 major cancer centers who have more experience with gallbladder cancer than other places - Sloan-Kettering in New York. MD Anderson in Houston. And, Dana-Farber in Boston. Some of the folks on this board go to Sloan-Kettering.

You dad is a fighter. He's proven that by being a 20-year survivor of colon cancer. All of you should take hope and strength from that!

There are a couple other GBC threads here on the "rare cancers" board. Both of them started by Lily. Page down until you find them. There is a lot of info in those. Print some of the posts off for your dad to read. He will see that there is always hope...and miracles do happen.

Best to you and your family. Please keep us updated...and ask any and all questions you have.

Charmi

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

Likely a good choice Meg. We don't have those here in Canada. But I have heard of at least two that Charmi mentions. I have to correct something from my friend from Canada who went to Mayo. He did in fact have liver cancer as well as gallbladder cancer. And they apparently got it all. Amazingly they still go over scans done in Canada with him. That's good service!
Good luck for your husband. I've alerted Lily by email that you are asking for information.
Cheryl

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

Likely a good choice Meg. We don't have those here in Canada. But I have heard of at least two that Charmi mentions. I have to correct something from my friend from Canada who went to Mayo. He did in fact have liver cancer as well as gallbladder cancer. And they apparently got it all. Amazingly they still go over scans done in Canada with him. That's good service!
Good luck for your husband. I've alerted Lily by email that you are asking for information.
Cheryl

Meg2003
Posts: 13
Joined: Jan 2012

We finally got my dad out of the hospital (which was a complete nightmare) and he has fluid in his gallbladder which we are assuming is from the cancer, does that sound right? If that is the case, then it looks like this is going pretty fast because as of Monday, there was no fluid.

We are doing everything we can to get him into the cancer center ASAP because he still hasn't even seen an oncologist. Since he was in the hospital, shouldn't they have sent an oncologist in the moment they knew it was cancer? I'm rather frustrated. The center we're going to in 4 hrs away and we most likely won't get in until the end of the week and feel like we're making no progress in fighting this thing.

Can you tell me what to expect for the first few months of treatment. it look like it's 5 days a week for the first 6 weeks and then is it less?

As of right now, my dad is extremely down and out. Anytime the nurses mentioned the words 'make you comfortable' he took that as he was going home to die. How do I encourage him to fight because as of right now I feel like he's giving up. He's worried about feeling even worse once treatment starts. We need him to fight (which is completely selfish) but we just can't give up on him.

Meg2003
Posts: 13
Joined: Jan 2012

We finally got my dad out of the hospital (which was a complete nightmare) and he has fluid in his gallbladder which we are assuming is from the cancer, does that sound right? If that is the case, then it looks like this is going pretty fast because as of Monday, there was no fluid.

We are doing everything we can to get him into the cancer center ASAP because he still hasn't even seen an oncologist. Since he was in the hospital, shouldn't they have sent an oncologist in the moment they knew it was cancer? I'm rather frustrated. The center we're going to in 4 hrs away and we most likely won't get in until the end of the week and feel like we're making no progress in fighting this thing.

Can you tell me what to expect for the first few months of treatment. it look like it's 5 days a week for the first 6 weeks and then is it less?

As of right now, my dad is extremely down and out. Anytime the nurses mentioned the words 'make you comfortable' he took that as he was going home to die. How do I encourage him to fight because as of right now I feel like he's giving up. He's worried about feeling even worse once treatment starts. We need him to fight (which is completely selfish) but we just can't give up on him.

Cynth89
Posts: 15
Joined: Jan 2012

Hi Meg

I'm sorry you have had to come to this board but I'm glad you have found it as the people on this board are such an inspiration!

I'm not sure about the fluid on the gallbladder as my Mum hasn't had that. You would think that when someone is diagnosed with cancer they would see an oncologist but my Mum had to wait over a month to see one which I think is terrible.

The treatment you talk about sounds like radiation treatment because that is every day for 6 - 8 weeks at a time.

Try and tackle one thing at a time with him as this will be so overwhelming for him and for all of you. I know when Mum looks at it all together she gets so overwhelmed so I try and brake it down to one thing at a time and that seems to be easier.

Keep in touch and take care.
Cynthia

aklitz
Posts: 9
Joined: Jan 2011

Hi Everyone,

My mom was diagnosed with stage IV gall bladder cancer last January. She is 61 years old and in otherwise good health.

This diagnosis was after she thought she had beat stage II gall bladder cancer in 2008. She had her gall bladder removed and a liver resection at that time. No chemo or radiation, no further scans even! She was then told to go live her life. We thought she was cured.

Then, with some symptoms we learned of the recurrence in Jan. of 2011. We were not given a lot of hope at that particular time. Her doctor said she's be surprised if she was still around in three years. Needless to say, this was a big blow. My mom had 16 weeks of chemotherapy 3 on one off with cisplatin / gemcitabine. She tolerated it well and to the doctor's surprise all signs of cancer disappeared. My mom also had radiation last fall as a further safeguard against the return of her cancer. She just had a scan a few days ago that show a suspicious lymph node in her abdomen / back area. We are very scared to face the next round of treatment, as I know that the cancer keeps fighting harder against the chemotherapy. Any encouragement for this next chapter would be so appreciated. We are not ready to give up at all!

Angi

aklitz
Posts: 9
Joined: Jan 2011

Hi Everyone,

My mom was diagnosed with stage IV gall bladder cancer last January. She is 61 years old and in otherwise good health.

This diagnosis was after she thought she had beat stage II gall bladder cancer in 2008. She had her gall bladder removed and a liver resection at that time. No chemo or radiation, no further scans even! She was then told to go live her life. We thought she was cured.

Then, with some symptoms we learned of the recurrence in Jan. of 2011. We were not given a lot of hope at that particular time. Her doctor said she's be surprised if she was still around in three years. Needless to say, this was a big blow. My mom had 16 weeks of chemotherapy 3 on one off with cisplatin / gemcitabine. She tolerated it well and to the doctor's surprise all signs of cancer disappeared. My mom also had radiation last fall as a further safeguard against the return of her cancer. She just had a scan a few days ago that show a suspicious lymph node in her abdomen / back area. We are very scared to face the next round of treatment, as I know that the cancer keeps fighting harder against the chemotherapy. Any encouragement for this next chapter would be so appreciated. We are not ready to give up at all!

Angi

aklitz
Posts: 9
Joined: Jan 2011

Hi Everyone,

My mom was diagnosed with stage IV gall bladder cancer last January. She is 61 years old and in otherwise good health.

This diagnosis was after she thought she had beat stage II gall bladder cancer in 2008. She had her gall bladder removed and a liver resection at that time. No chemo or radiation, no further scans even! She was then told to go live her life. We thought she was cured.

Then, with some symptoms we learned of the recurrence in Jan. of 2011. We were not given a lot of hope at that particular time. Her doctor said she's be surprised if she was still around in three years. Needless to say, this was a big blow. My mom had 16 weeks of chemotherapy 3 on one off with cisplatin / gemcitabine. She tolerated it well and to the doctor's surprise all signs of cancer disappeared. My mom also had radiation last fall as a further safeguard against the return of her cancer. She just had a scan a few days ago that show a suspicious lymph node in her abdomen / back area. We are very scared to face the next round of treatment, as I know that the cancer keeps fighting harder against the chemotherapy. Any encouragement for this next chapter would be so appreciated. We are not ready to give up at all!

Angi

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

Hi Angi: Most of us with gallbladder cancer were given a few months at best, that is how little is really know about the disease, but we're still here. Gallbladder cancer is a tough sneaky one to have as it seeds cancer cells to the abdominal area and there are few symptoms. I was diagnosed with gallbladder cancer in October 2009, had my gallbladder, its tumour, and part of the liver out in April 2010, and started chemo in September 2010 (cisplatin + gemcitibine) to get at the cancerous nodules on my peritoneum (quite common with gallbladder cancer). Like your mom's surgery, this was likely not an aggressive enough treatment (see Lily50's story), but this cancer is rare and so not all surgeons are aware of what should be done like examining all of the adjacent organs and cutting out suspicious things like lymph nodes. I did 12 treatments of cisplatin + gemcitibine and tolerated this regime very well, even drove myself to and from chemo. But it didn't get rid of the peritoneum nodules so I did 12 treatments of oxaliplatin + irenotecan + 5FU - a more aggressive treatment with lots of side effects. This treatment stabilized the peritoneum nodules. Not sure where we will go next - surgery perhaps or more chemo.

Never give up! Are they sure that the lymph node is cancerous (how can they tell? Usually only PET scans can tell that)? If it is, can they cut out that lymph node through laparoscopic surgery (and have a look around at the same time)? Can it be zapped with radiation? (I can't have radiation apparently as I have a "compromised liver", whatever that means!

Sorry that you mom has this awful disease.

Cheryl

aklitz
Posts: 9
Joined: Jan 2011

Hi Cheryl,

My mom had a biopsy on the area of the lymph node in her messentary / peritoneum (sp?) last Thursday; we will get results tomorrow afternoon. I will post more at that time. She hasn't tried the second round of chemo, we are thinking that may be next. We are all pretty nervous about the many side effects, but she is tough and ready to fight. They are saying they cannot operate as the lymph node is wrapped in blood vessels.

It sounds to me like the two of you have quite a lot in common and I hope to be corresponding with you for a long time into the future about these issues.

I'll say a prayer for you and all cancer victims. I appreciate your reply to my post. I have no idea why my information posted so many times, will have to work on that, as well.
Take care,
Angi

aklitz
Posts: 9
Joined: Jan 2011

Hi Cheryl,

My mom had a biopsy on the area of the lymph node in her messentary / peritoneum (sp?) last Thursday; we will get results tomorrow afternoon. I will post more at that time. She hasn't tried the second round of chemo, we are thinking that may be next. We are all pretty nervous about the many side effects, but she is tough and ready to fight. They are saying they cannot operate as the lymph node is wrapped in blood vessels.

It sounds to me like the two of you have quite a lot in common and I hope to be corresponding with you for a long time into the future about these issues.

I'll say a prayer for you and all cancer victims. I appreciate your reply to my post. I have no idea why my information posted so many times, will have to work on that, as well.
Take care,
Angi

aklitz
Posts: 9
Joined: Jan 2011

Hi Cheryl,

My mom had a biopsy on the area of the lymph node in her messentary / peritoneum (sp?) last Thursday; we will get results tomorrow afternoon. I will post more at that time. She hasn't tried the second round of chemo, we are thinking that may be next. We are all pretty nervous about the many side effects, but she is tough and ready to fight. They are saying they cannot operate as the lymph node is wrapped in blood vessels.

It sounds to me like the two of you have quite a lot in common and I hope to be corresponding with you for a long time into the future about these issues.

I'll say a prayer for you and all cancer victims. I appreciate your reply to my post. I have no idea why my information posted so many times, will have to work on that, as well.
Take care,
Angi

Cynth89
Posts: 15
Joined: Jan 2012

Hi All,

We have spoken to the chemo oncologist and the radiation oncologist and they have decided to start Mum on chemo and no radiation to begin with. They said this will help to show us if the chemo is working.

Her chemo cocktail is Carboplatin and Gemcitabine. She has both of these on the first Friday and then only gemcitabine on the second friday and the third friday she has off. She then starts her cycle over again for the next three weeks. They said if she responds well to the chemo they will do this for 6 cycles and then she will have scans to see how she is going. She is having a PICC line put in to have the chemo through so they don't have to find a vein every time as she is already really hard to find veins on.

I asked about molecular profiling and the oncologist didn't seem to think that would help at all but they aren't very interested in doing a lot of things in the public health system in Australia unfortunately.

Thank you all for your support and encouragement and I hope everyone is doing well,keep me updated on your stories:)

Cynthia

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

Hi Meg: I had the same problem. I had my gallbladder and its tumour plus part of my liver cut out but didn't see the surgeon until one month later when he told me I had cancer (apparently they didn't tell me right away as I was in intensive care for 10 days and I needed my spirits high!). And then I didn't see an oncologist until several weeks later - I couldn't start on chemo because the incision from the surgery hadn't yet healed; that took 4 months. I think in my case it wasn't a regular diagnosis of cancer as they didn't know I had cancer until they took my gallbladder out (happens a lot with gallbladder patients as you usually go in for gallstones as there are no cancer symptoms).

I haven't heard of fluid in the gallbladder; however, mine was full of a jelly like substance and lots of gallstones plus the tumour which had already grown out of the gallbladder and across to the liver.

I couldn't have radiation as that would compromise the liver apparently. Don't know why.

My first chemo treatment was 12 treatments of cisplatin + gemcitibine administered together once a week for two weeks, and then the 3rd week off. I, too, have a PICC because trying to find a vein after chemo treatments was a nightmare. My second round of treatments was 12 treatments of oxaliplatin + irenotecan + 5FU pump.

I've never had molecular profiling and don't know what that is. My oncologist doesn't believe in blood tests for CA19, CA125, CEA even though I would love to have a number to talk about!

I had MRI scans every 3 months.

Cheryl

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

Hi Cynthia: I've answered you down here as a reply is hard to find if you reply anywhere except at the bottom of the discussion thread. I think your discussion has appeared three times because you hit the "post comment" button 3 times. Usually in frustration as nothing happens when you hit it the first time! or the second time! Very slow sometimes.

I hope your mom's results were better than mine. I now have a tumour (small 2cm) on my liver that actually was detected as a possible tumour in January 2010 before I even had the surgery that removed my gallbladder, its tumour, and part of the liver. I'm frustrated that the surgeon didn't look at it during the surgery because afterwards it was identified as a benign hemangioma until January 2012 when it was interpreted as a possible tumour. I had nuclear tests which confirmed that it is in fact a tumour. Don't know where we go from here because once a tumour has spread it is usually game over for further treatment like surgery to cut things out. At least here in Canada. I think gallbladder cancer has this terrible reputation of not being treatable, which is wrong of course, that no one wants to touch you!

Anyways, let me know what happens.

Cheryl

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

Whoops - the message was supposed to be for Angi! Sorry Cynthia. but of interest to you too. Chemo brain!
Cheryl

LucyDoodle
Posts: 22
Joined: Jan 2012

Hi Cheryl
Sorry to read your post about the tumor in your liver. Have you spoken to the surgeon who did your original surgery? After all you have shown him you are one very determined lady!
Sending a hug your way.
Debbie

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

Hi Debbie: My oncologist apparently is checking for a liver surgeon to cut the little thing out (my original surgeon was a colorectal-gallbladder surgeon) - he is not positive because with mets to the peritoneum they may think all is lost! But the peritoneum surgeons won't do the surgery with mets to the liver! Chicken and egg thing. So I haven't heard anything yet. Then it has to be presented to the Ontario Cancer Board who can turn everything down. Even though I have gone at least 3 years (certainly over the 2-3 months they gave me originally!). That's one problem with a public medical system - cost cutting. Although everyone gets treated, no matter how poor you are, or if you're in jail, whatever, sometimes the treatment can't go far enough especially if there is a risk of no success.
Thanks for your thoughts Debbie.
Cheryl

Meg2003
Posts: 13
Joined: Jan 2012

We finally got him into Cancer Treatment Centers of America, and we love it! He's stage 4 and they are scheduling surgery. There were no battles with the doctor, they just said,"Let's do it."

The procedure is called Hipec, I guess it's new and only 4 doctors in the country know how to do this. They will be removing his gallbladder, as much of the liver as possible, and any other tumors they see and then feed chemo directly to the area while he is open. Has anyone had this done?

We are very hopeful and supposedly they have had great results with this procedure. I'll keep you posted!

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

Hi: It is a fairly common procedure for peritoneal cancer either primary peritoneal cancer or as mets from ovarian cancer and appendix caner but patients with these cancers are few and far between. With those cancers, it is usually done following peritoneal stripping or debulking. I'll be very interested in the results because it hasn't been done as far as I know very often with gallbladder cancer. I am in line for it in Calgary, one of the few places it is done in Canada. A friend of mine had gallbladder cancer that had spread to the liver. His doctors in Saskatchewan told him to go home and prepare for the worst - he was only 38 at the time with two young children. He chose to go to the Mayo Clinic in Minnesota on his own money and they did all that you describe except for the HIPEC. He was up and around in no time and was home in about a week. He appears cancer free now and happy he made that choice. It is the surgery I should have had!
Could you let me know where his treatment centre is and who are the surgeons doing the surgery? Good luck with the surgery. He'll be fine.
Cheryl

lirok's picture
lirok
Posts: 49
Joined: Jun 2011

The link below is a story in today's NY Post about my son Chris and newly elevated Cardinal Timothy Dolan in NYC.

http://www.nypost.com/p/news/local/manhattan/answered_prayers_1v9yTzsFIQrscpOQruavrM

Rocky

Monarch
Posts: 36
Joined: Oct 2011

Thank you so very much for sharing the story about your sweet son, Chris! It moved me to tears. May I post a link to the story on my blog? (If you prefer not, I completely understand!)

I know you are proud...and you definitley have cause to be!

I have a question for you, are you still experiencing leg pain? My mom's knees are just giving her fits. She's had a really hard time getting around the last couple days. I ended up taking today off to go stay with her as she needed help getting up and down. I'm hoping you've found some relief from your joint pain and that you'll share what worked for you.

Again, thank you for sharing the story about Chris!

Charmi

lirok's picture
lirok
Posts: 49
Joined: Jun 2011

You can absolutely use the story in your blog. As for my pain, yes it is still causing me problems. I have issues with all joints, especially my hips and legs. I also now have balance issues when walking. I am close to using a cane. They tell they see nothing but talking to the nurses during chemo it is definitely a by product the treatment.

Continued best wishes to mom.

Rocky

lirok's picture
lirok
Posts: 49
Joined: Jun 2011

My surgery involved removal of the gallbladder and 40% of my liver including the bile ducts. They had to cut part of my large intestine and create new bile ducts sewn into the liver to move the bile from the liver to my intestinal tract (due to the gall bladder removal). The liver will regenerate itself in about 8-12 weeks depending on how much they take. My surgery was successful.

Just stay positive and pray. Everything will be fine.

Regards and good health to all,

Rocky

LucyDoodle
Posts: 22
Joined: Jan 2012

Rocky,
Thanks for sharing the story about your son:)
Debbie

lirok's picture
lirok
Posts: 49
Joined: Jun 2011

Haven't seen any posts from anyone. Hope all are doing well with their respective treatments. I have now had 3 (#4 tomorrow) treatments of the Folfox and it has really taken its toll. It takes about 4 days after the treatment and I hit bottom. Neuropathy is constant in my hands and feet. My sensitivity to anything cold is also troubling. Nausea is a constant companion though the meds given help to get through it. My old pal constipation has also paid a visit. I have a reduced appetite and have dropped 20 pounds so far. Hopefully this will all result in a positive result from my next scan in a couple of months. My port has finally healed and it makes everything so much easier though I am still running some low grade fevers that made my doc put me back on antibiotics for a few weeks.

No complaints though. There are those worse off with far greater obstacles than mine. I hope you are all doing well and look forward to hearing from you.

All the best,

Rocky

LucyDoodle
Posts: 22
Joined: Jan 2012

You must be so pleased to find a surgeon who is prepared to do surgery. Please let us know how Dad does ( I assume they are planning to do surgery soon).
Debbie

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

hi Rocky: I have just finished 12 treatments of FOLFOXIRI (oxaliplatin + irenotecan + 5FU). Previous to that I had 12 treatments of cisplatin + gemcitibine. The FOLFOXIRI treatments are rough, indeed, but after the first treatment I started taking the following: 5-10 grams of L-Glutonate powder in glass of juice every day, alpha lipoic acid tablets 3 times a day, calcium-magnesium tablet once a day, and Vit b6 once a day. That seemed to get rid of the neuropathy, the cold intolerance, first bite syndrome, and the aches. I still take these supplements because the neuropathy can last a long time after your last chemo. I could drink ice cold drinks right after chemo! We get a lot of meds for nausea so I was OK there but diarrhea was terrible (the irenotecan and 5FU) - just went with it as it only lasted 3-5 days after 5FU pump came off. The fatigue was a factor too but just went to bed or walked my little dog.
Keep us posted on how you do.
Cheryl

KICKSTART
Posts: 1
Joined: Nov 2012

Hello Meg,
I just found this site and this is my first post. My 31 year old son was diagnosed with 80% gall bladder cancer 10% cholongio and 10% unknown. He has extensive tumors in his liver and I have had three surgeons say absolutely no to surgery. He has gone through two rounds of cesplatin and GEMZAR. We are also at the CTCA in Goodyear, AZ. My son arrived in a wheel chair 6/1/2012 and is walking driving enjoying his life now. Except for the fatigue you wouldn't know he was ill.

What Oncologist is your family seeing and which CTCA are you at? I'm asking because we do not feel our Onc is "out of the box" thinking enough. We do love CTCA though.

I hope everything turns out great for your family.
Lori

rayofhope24
Posts: 1
Joined: Mar 2012

Hi I'm here for my best friend who's father has been recently diagnosed with gall bladder cancer stage 4. We reside in India and I'm a health professional myself. I request everyone to provide me with the best knowledge about the surgeons and hospitals specialised for the same in the U.S. so that we can provide for the best care for my friend's father. She's broken and I really want to help her somehow. At the time of diagnosis, expecting 7-8 months, maximum.
Thanks in advance.

Dr. Parijat.

Amazed by the strength you all beam through your brave stories. Hats off!

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