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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

LucyDoodle
Posts: 22
Joined: Jan 2012

Hi Lily,
Thanks for the reply under the old thread.
Having already had a surgeon attempt a resection but stop and conclude that surgery is not an option I wonder if there are other surgeons out there who will consider this assuming I am able to find a more aggressive treatment to shrink the tumor. In your experience do you think it is a case of being persistent with the same surgeon or continuing to try and find alternatives? Our Doctors definately seem to be palliative care mode!!!
Debbie

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

Hi Deb,

I have to ask you the question of what type of surgeon was he? The survivors that I know of all had their surgery done by Hepatobiliary surgeons all across the US. They have had experience with Gallbladder patients and know what to do to help us.

I was very persistent with my surgeon and even though he told me NO twice for whatever reason the third time I saw him I received a YES. I think they sometimes need to know that you are a fighter and are willing to go the distance. I was told that I was very lucky as my surgeon was actually the pioneer for this type of surgery.

If you aren't happy with the answers that you are receiving then start looking for doctors who will help you. They are out there you just need to find them. Stay strong! I will look for their names and try and post them tomorrow.

Take Care
Lily

LucyDoodle
Posts: 22
Joined: Jan 2012

Hi Lily,

I had a lot of faith in our surgeon even if I didn't like what he found and he was certainly in the right field.

What ever happens in the future the tumors need to start shrinking if that is at all possible. The encouragement and support we have had in the last few days from this group has helped us focus on this.

Take care
Debbie

evelynchan2004
Posts: 6
Joined: Jul 2012

My mom has been sick for a couple of months now. Rapid weight lost, appetite loss, and on & off severe stomach and back pain. She had already seen her Dr. and a GI specialist which then scheduled an appointment for her in two weeks for a colonoscopy and endoscopy. Within a couple of days, we had to take her to LAC-USC county hospital's emergency room. The doctors noticed her heart rate was irregular, incredible high and focused on this other than her pain. She was admitted that night for observation and was diagnosed having as A-Fib ( affibrillation) and acid reflux.

Her appointment with her GI went well. He stated The images for her colonoscopy showed no abnormalities, just a little inflamed; no cancer. Because the results didn't explain her symptoms he referred her to a cardiologist (for the A- Fib) and a endocrinologist because of her results of her blood works.

When she went to the endocrinologist, he said her thyroid was normal. But her liver test was high. And her cardiologist mentioned she did not have an A-Fib, but has occasional arrhythmia. Since both specialists were unable to diagnosis her GI doctor made an appointment to get a CT Scan within 2 weeks.

She didn't even reach one week where on July 4 we had to take her to the ER at Huntington Memorial Pasadena. They did an ultrasound in her abdominal area and concluded that her Gall Bladder had to be removed. They admitted her and did another ultrasound. Early that morning a surgeon entered the room and announced they found masses (tumors) in her liver and suggested that they be removed. My mother did another ultrasound and CT to locate the tumors.

The surgeon came in the next morning that they detected the masses in several areas in her body and was not able to operate. They wanted a biopsy to determine if it is cancer. They confirmed that she had gallbladder cancer. It had spread throughout her lymph nodes in her back and neck and stomach outer lining. Surgery was not an option.

The first oncologist had given her 3 months without chemo and 6 months with chemo. This Thursday is going to be her first chemo treatment (Gemzar & Cisiplatin). We got a 2nd option and choose him to treat our mother since he was more experienced, and compassionate. We felt he expressed more concerned and effort in treating our mother.
Although because it was stage 4 and that Gallbladder is such a rare cancer, the outcome of it all remained the same. But will try to make ordeal less painstaking.

My mom is a beautiful 57 year old woman who was very strong and maintained her health. She always took good care of herself. In her lifetime she has never gotten seriously ill. For this to be called cancer it was a shocker all to us.

If anyone out there has been diagnosed with this same cancer, please respond with your experiences & thoughts. My family wants to be aware of what we may encounter. Any suggestions, tips or any kind of help will be very much appreciated. You can also e-mail me @ evelynchan2004@yahoo.com or my sister @ casia2468@aol.com. Thank you

dawnfoiles
Posts: 1
Joined: Dec 2012

My husband Steve was diagnosed on Labor Day of this year. We were all in shcck since he is so healthy and YOUNG 48 years old. Who is your doctor and how did you find success? The Gemzar and Cisplatin did damage on his hearing so they changed chemo...then THAT didn't work and the tumors got bigger. Now he is on Oxaliplatin and Xeloda. We are running out of options...any advice?

Bearss
Posts: 3
Joined: Jun 2013

I was diagnosed Oct of 2012, I was 47, now 48, was very healthly and in shape man at 215#, now 170. I too was started with Cis and Gem, ringing in my ears now. I stopped the chemo in Jan 2013 after 5 cycles. At the same time the chemo started i started the Hallelujah Acres diet, juicing spiniach and carrots daily, i have also used the Dr Schulze incurables program for the month of Feb, after my 5th cycle, i had awesome results up to now. By March the CT scan couldn't pick up the tumors in the liver and omentum, lymph nodes and pelvic area anymore (they were at a cellular level) Now in June 2013, they have grown back to 25% in my liver and omentum only. I have stayed on the Hallelujah diet and juicing with now adding supplements For my adrenal and thyriod glands. The oncologist wants me back on chemo and/or will monitor me with my alternative programs. How is your husband doing at this time, i hope well. Bearss

Bearss
Posts: 3
Joined: Jun 2013

I was diagnosed Oct of 2012, I was 47, now 48, was very healthly and in shape man at 215#, now 170. I too was started with Cis and Gem, ringing in my ears now. I stopped the chemo in Jan 2013 after 5 cycles. At the same time the chemo started i started the Hallelujah Acres diet, juicing spiniach and carrots daily, i have also used the Dr Schulze incurables program for the month of Feb, after my 5th cycle, i had awesome results up to now. By March the CT scan couldn't pick up the tumors in the liver and omentum, lymph nodes and pelvic area anymore (they were at a cellular level) Now in June 2013, they have grown back to 25% in my liver and omentum only. I have stayed on the Hallelujah diet and juicing with now adding supplements For my adrenal and thyriod glands. The oncologist wants me back on chemo and/or will monitor me with my alternative programs. How is your husband doing at this time, i hope well. Bearss

Monarch
Posts: 36
Joined: Oct 2011

Excellent idea! Thanks for starting the new thread, Lily.

Charmi

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

Hi Charmi,

Thanks for visiting the new thread!
Take Care
Lily

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

Hi: You will likely start with a regime of cisplatin + gemcitibine 2 wks on, 1 wk off. I had 12 treatments of this for gallbladder cancer stage IV but my tumour, gallbladder, and part of my liver were removed during surgery in 2010. Because the cancer had spread to the peritoneum (6 nodules), my chemo regime was changed to oxaliplatin + irenotecan + 5FU pump (42 hrs). This is a much tougher regime with more side effects but I completed 12 treatments with few problems after I learned what to do about the side effects. I have recently had several CT scans and am awaiting a PET scan to see if surgery is an option. The problem with gallbladder cancer is that it spreads, and often to the peritoneum. Tumours on the peritoneum don't react well to IV type chemo because it is not well connected to the blood system. So the usual treatment in the US is peritoneal stripping plus heated chemo directly into the abdominal cavity. In Canada, there is only one place that does this. Anyways, you want to keep on top of your surgery and treatment options.
Good luck and keep us posted.
Cheryl

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

Thanks to all for their wishes on my recent results. Cheryl, yes, I want to know EVERYTHING about the oxaliplatin and 5 FU. I am having my mediport installed on Wed and go Wed afternoon for my 1st treatment. A little more chemo is small potatoes considering what we have all been through already.

Say hi to your mother Charmi. Me and my wife were thrilled to hear her great results. She is proof that this illness in not a death sentence. You have to stay positive at all times and continue to fight.

I'll post to this new thread from now on and pray that we won't need one for 2013 for any of us.

Rocky

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

Hi: Keep in mind the cisplatin/gemcitibine is the standard treatment for gallbladder cancer and my FOLFOXFIRI treatment was a follow-up for the peritoneum cancer nodules I have that seeded from the gallbladder tumour before it was removed. So it is likely they will start you on the regular cisplatin/gemcitibine chemo (I can't remember what stage you are and what had already been done as it is on the other "page"! sorry!). I had few side effects from that treatment just some constipation although I did end up in the hospital after the first treatment because it was too strong and it irritated my colon. The oncologist reduced the cisplatin and no more troubles after that. We get so many pills to treat nausea that that wasn't an issue. I had 12 treatments and felt good enough during them to drive myself to treatment. Because the MRIs showed peritoneum nodules (which had been tested during surgery and were malignant - why didn't they cut them out????), the oncologist tried something different - the oxaliplatin + irenotecan + 5FU pump (I have a PICC line for the pump) - and that did work in terms of stabilization and shrinkage. But it does have some nasty side effects like neuropathy (tingling in fingers and toes), cold intolerance (in terms of breathing and drinking), fatigue, diarrhea, sweating, first bite pain. For me, the oncologist reduced the amount of oxaliplatin and I took supplements to help with the neuropathy and cold intolerance - Vit B6, calcium/magnesium, L-Glutamine Fermented powder, alpha lipoid acid pills - and I had no problems with those two side effects after that. The diarrhea was a problem but nothing worked so I just let it go (so to speak). Ditto with the fatigue.
Let us know how you make out!
Cheryl

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

I had the Gemcitabine/Cisplatin last spring and summer followed by the radiation in the fall. They are trying the oxaliplatin 5FU to get rid of the small hot spots I have left. I was made aware of all the side affects you mentioned. They called today and my port will now go in on Wed afternoon and then I go back for my 1st round of chemo on Friday.

Thanks,

Rocky

maudsie
Posts: 54
Joined: May 2010

Greetings to Lily, Debbie, Cheryl, Rocky, Charmi, and everyone else here! And a special shout-out to Lily -- YAY Lily...great to see you back here, and terrific idea to post a new thread for 2012! You did that last year, too, and here we are a year later, still posting, still surviving.
I am going on 4 years since my diagnosis, and doing great. I did loose a few dear people last year, but I rejoice in the continued success of many others. This board is full of wonderful people who are a great resource, I'm happy (well, you know what I mean) to be on this road with you all.

love around, Maudsie

Monarch
Posts: 36
Joined: Oct 2011

Hey gang,

Question for you. I have seen that some of you are having MRI's. When do they change over from CT to MRI? I would assume there would be huge advantages to and MRI (like the idea of avoiding the extra radiation).

Mom has had 2 post-treatment CT scans. She has not had another PET scan (the one pre-resection showed no hot spots but I know she will still have to have one at some point in the fairly near future). They have not even mentioned MRI's at this point but I would love for her to switch over to those.

Any insight you can give me into the scan decisions/reasons would be GREATLY appreciated!

Best to everyone!

Charmi

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

Hi Charmi: I had mostly MRIs because my first scan for some reason was an MRI and that then was my base. MRIs don't use radiation and that is a good thing (PET scans use a lot of radiation - isn't it injected right into you?). But oncologists disagree about which scan type - CT or MRI - provides the best information on tumours. My little cancerous nodules on the peritoneum were for some reason more detectable using a CT scan although the nodules were also visible on MRIs once the radiologists knew they were there. I just had two CT scans after 12 treatments of oxaliplatin + irenotecan + 5FU so maybe my oncologist is more in favour of CTs now. For sure they are easier and quicker! But there is the radiation issue. There is also the cost issue. Many doctors won't recommend MRIs for simply financial reasons. Here in Ontario PET scans are rarely done but I'm in line for one soon. They are expensive and most hospitals don't have the machine.
Awhile back I googled the internet for a comparison of the two, CT vs MRI, and found quite a lot of good information. In the end though I think it depends on what the oncologist is comfortable with and what the base is - the two scan types provide slightly different information.
Cheryl

northa914
Posts: 89
Joined: Mar 2011

I recently broached the subject of PET scans with my surgical oncologist, asking why he used CT scans vs PET scans for my case. He said that PET scans are not reliable for certain types of cancer (mine is cholangiocarcinoma). He also has found the PET less reliable in general than the CT and MRI. I didn't ask why he used the CT as opposed to the MRI for me. He also tends to use the PET as little as possible due to the irradiated "stuff" that is used for it. He looks at all scans and tissue samples himself, and doesn't just rely on the radiologists' and pathologists' reports. Apparently some oncologists - particularly ones that are newer to the field - rely solely on reports and don't look at scans, slides, etc. During my second opinion, the oncologist admitted that he really didn't know how to interpret my scan and relied solely on the radiologist's report (and this was at a renowned facility in Southern California). Pretty scary when you read about people who were misdiagnosed as not having cancer only to find out they really did and it's now too late. And then there are people who are diagnosed as having cancer that are administered a chemo regime only to find out that they never had it. Good reasons for us to advocate for ourselves!

haugy
Posts: 9
Joined: Sep 2010

In my case all i have had is ct scans. i asked my surgical oncologist and my chemo oncologist and they both responded saying that they felt a ct scan showed better definition for this type of tumour /cancer . i have also inquired about the amount of radiation from the ct scans and have been told they feel the benefits outweigh the risks.

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

Hi Charmi,

I guess it just depends on what the doctor's want to use. I have had all three at some point in time. Started out with CT scans, surgeon didn't like them so had to have MRI scans, had surgery then got a PET scan. When the tech that was administrating the PET scan came in to give me the injection and he had full body armor and a metal box with tongs to remove it from the box I felt like I was in a science fiction movie. More chemo and CT scans every three months for 2 years, and then every 6 months, I’m hoping this year I will only have to have one (fingers crossed).

Yes, I do glow in the dark (my daughter scratched her cornea and when I took her to the doctor and they used a black light to look at her eye there I was there next to her glowing). We all had a good laugh about that.

Yes, I do set off those pesky sensor bars when I'm are walking out of a store, I have been stopped many a time to check my bags for stolen merchandise. In the beginning I would get angry, but now I just laugh about it and don't let it ruin my day.

So the bottom line is whatever the doctor's want is what your mom will have to do. I have had all my diagnostic testing done at the same facility and I have requested that the same doctor read my scans for consistency. I get in and out of there quite quickly; I don’t even have to wear the lovely fashion gowns. As long as I wear sweats, t-shirt and a sports bar I’m good to go. The standard joke at my facility is here comes Lily the frequent scanner (wish I would get frequent scanner miles to somewhere).

Take Care
Lily

Monarch
Posts: 36
Joined: Oct 2011

I appreciate everyone's input regarding scans.

We met with the radiation oncologist today. The schedule that was set today is a CT scan every 6 months for the next 2 years. We discussed all the various scans and he said his recommendation was the CT scan. So, that's what we're going with.

Like you, Lily, Mom has had all of her scans done at the same facility. I'm not sure if they've been read by the same doc - but the radiation oncologist always reads them too. Thank you for mentioning it, as I will request that the same doc in the radiation dept read the scans each time, too.

Mom jokes about glowing in the dark. I told her I was going to get a "glowing" button from choosehope. I'm warmed by the fact that you have such a positive attitude.

Again, thanks to all!

Charmi

Cynth89
Posts: 15
Joined: Jan 2012

Hi my name is Cynthia
My mum was diagnosed with gallbladder cancer about a month ago and it has spread to the stomach and ovaries. They say it is inoperable and are looking to do chemo on her ovaries and gallbladder and radiation on her stomach. Since reading all of your posts it has given me hope that maybe surgery can be done at a later date and that the outcome may not be so horrible. I am her only child and I love her so much so am willing to try anything that can help. She is already very small and only weighs about 42 kg and they haven't even started chemo yet so I am very worried about her losing more weight. I was wondering if anyone can tell me what chemo cocktails have worked for them and what haven't and the same for radiation. Also, as far as foods go what does she need to avoid now and what should she be eating?

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

Welcome Cynthia to our discussion board!

I'm Lily and I've been a survivor for 6 years with Stage IV GBC. I'm so sorry that this disease has entered your mum and your life. It is a terrible disease but don't believe in all of the outdated statistics. We need new statistics and for doctor's to realize that there are survivors. What Stage has she been diagnosed at? How old is she?
Inoperable doesn't mean Never just Not Now.

My chemo cocktail was Gemzar/Cisiplatin which even though it can be difficult, worked for me. I couldn't have radiation as my liver was compromised.
Treatments are very similar but depending upon the stage can determine what the course of treatment will be.

Your mum needs to eat even if she doesn't feel like it. I found that smaller meals throughout the day worked better for me.
No caffeine, processed foods or sugar. Fruits, vegetables, lean protein, chicken, tuna, turkey and smoothies worked well. Supplements can help but only if her oncologist is in agreement. Some supplements can interfere with the chemo.
Again we are glad you are here and we will try to help you with any questions, to the best of our abilities and experience.

Take Care
Lily

Cynth89
Posts: 15
Joined: Jan 2012

Hi Lily,
Thanks for getting back to me.Your story has been an inspiration to me as well as everyone else on this board. I am positive that we can beat this now after reading everyones story.
My mum is only 58 years old. They haven't told her what stage,only that it's spread from the gall bladder to the stomach and ovaries and it'/ not good and they can't do surgery.We have an appointment on Friday with the specialist.
Thanks so much,i'll run that past the specialist on friday and find out exactly what treatment they ae going to try.
Ok we'll start making sure we cut out the bad foods and only have the right stuff.
Thank you again
Cynthia

Monarch
Posts: 36
Joined: Oct 2011

I'm an only child too, Cynthia. When I found out about my Mom's diagnosis, my whole world stopped and sped up at the same time. I thought I was going to pass out.

I am sorry that you have been introduced to this disease. But, I'm glad you have found this board. The people here are wonderful.

Make sure that your medical providers know that you are a team. Let them know you as a family. Thank them for being part of your team and let them know you are going to push forward with a positive attitude and good expectations. You Mum is not a statistic - she is a person.

Let me know if you have any caregiver questions. I've walked in your shoes for the last 10 months. I will be happy to help you in any way possible.

Tell your Mum she has a whole host of people cheering her on!

Charmi

Cynth89
Posts: 15
Joined: Jan 2012

Hi Monarch,
Thanks for replying to my post.
my world just stopped dead when I was told. I'm only 22 and my Mum is only 58.
I will,that's why I want to go with her on Friday so they know that I am there and so that I can ask questions because Mum doesn't ask much,it is so much for her to take in.

When she starts chemo and radiation treatment will she need someone at home with her at all times? I don't live with her and my mum and father are split up so she lives alone but I can and will move back in if need be. I also work full time but I can take time off.

How did you deal with it? I can't imagine seeing her weak and I know it's going to break my heart, how did you stay strong?

Thanks,
Cynthia

Cynth89
Posts: 15
Joined: Jan 2012

Hi Monarch,
Thanks for replying to my post.
my world just stopped dead when I was told. I'm only 22 and my Mum is only 58.
I will,that's why I want to go with her on Friday so they know that I am there and so that I can ask questions because Mum doesn't ask much,it is so much for her to take in.

When she starts chemo and radiation treatment will she need someone at home with her at all times? I don't live with her and my mum and father are split up so she lives alone but I can and will move back in if need be. I also work full time but I can take time off.

How did you deal with it? I can't imagine seeing her weak and I know it's going to break my heart, how did you stay strong?

Thanks,
Cynthia

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

Hi Cynthia: I too have gallbladder cancer (diagnosed Oct 2009). I have had 24 treatments now and am awaiting meeting with my oncologist to see what the next step is. I did not have radiation but surgery removed my gallbladder, its tumour, and part of my liver. I have 6 cancerous nodules on my peritoneum which is what we are trying to get rid of now. Anyways, you ask about how your mom may react to the chemo (I can't talk to radiation as I didn't have it). I am now 68 years old and like your mom live alone (with my sweet dog Charlotte). I have lots of friends who kind of looked after me during the worst times (like after the surgery and during some periods of the last chemotherapy treatment) but no one stayed with me all the time. I had a daily nurse for awhile when I was recovering from the surgery but not during the first chemo tre atment (cisplatin/gemcitibine). However, during the last 12 treatments I had a PICC line put in (for the oxaliplatin + irenotecan + 5FU pump) and a nurse comes once a week to flush the line, take off the pump, and give me a Neulasta injection (these treatments stopped Nov 4 but I still have the weekly nurse to flush the PICC line). I had no problems with the first treatments (cisplatin/gemcitibine) but the latest treatments (oxaliplatin + irenotecan + 5Fu) had a lot more side effects, like cold intolerance, neuropathy, sweating, fatigue, diarrhea. Nevertheless, I managed on my own as long as I knew friends were close by and available if/when I needed them.

However, it all depends on how your mom will react to the chemotherapy and the radiation and it may take a few treatments to find that out. I'm sure she would love your company as it a rough disease to have. I didn't have children but I know I would have loved to have them with me or at least close by if I had.

Keep us posted on how it goes. You sound like a wonderful daughter!

Cheryl

Cynth89
Posts: 15
Joined: Jan 2012

Hi Cheryl,
Thank you for replying to my post and answering my questions. Your story, like everyone elses on this board is an inspiration to me and gives me and gives me the hope and strength we need to fight this disease. I hope that they are able to get rid of the 6 cancerous nodules for you. She has one friend who lives close by but everyone else,including myself live about 40 minutes away. Once we know how she reacts to the treatment we can see if someone needs to be with her at all times and if so I will be. I can take as much time off work as I need and will be going with her to every meeting and appointment she has so that I can keep track of how everything is going. She also has a cancer nurse for when she needs one to come to the house. I love her so much and will do anything to make it easier for her and we will fight this with everything we have!

Take care,
Cynthia

parthgovil
Posts: 5
Joined: Jul 2011

Dear Cheryl,

When u say 24 treatments it means what ! In my fathers case he has got one round of chemo which was of 6 cycles.

Regards

Parth

Monarch
Posts: 36
Joined: Oct 2011

Cynthia,

Your Mum is lucky to have you on her side.

Okay, here's what I did. I approached the whole thing as a project from the outset. I bought a binder, clear sleeves for paper (lots of them), a spiral notebook, and a planner.
I broke the binder into several sections - blood test results, oncologist documents, radation oncologist documents, a section for each of the individual doctors, and a section for hospital info (scheduled stays and emergency room visits). Every piece of paperwork has gone into the binder. It has come in very handy as we take it to every appt. The docs have referred to it, I've been able to answer questions, show test results, etc on the spot. (Note that all our docs willingly gave us copies of their notes from each visit. I keep those in the binder as well.)

In the notebook, I took notes at every appt. I also noted any questions we had going into the appt so that we wouldn't get caught up in the emotions and forget to get answers to things we wanted to know. I recorded Mom's blood pressure, weight, pulse, etc for every appt. When Mom was in the hospital for her liver resection, I kept detailed notes of drugs, when they were given, names of the nurses on duty, etc. Again, this information has been referred to many times.

The planner was Mom's responsibility. I bought one in her favorite color - and then "decorated" it before giving it to her. I wrote things on every page (We love you! You are a fighter! etc) - and on the bottom of EVERY page, I wrote Hope...Faith...Love. I put stickers of flowers throughout the calendar pages. And, I gave Mom a new pen. I asked her to keep up with it every day. Write down how she felt, what her temperature was, what her bp was, what made her feel better, what made her feel worse, what she ate, what she drank. It was a project in and of itself. It has been a valuable resource of info - and it also gave Mom something to do. She had visual proof that she'd not had enough to drink or that she felt better on the days she had an egg or two for breakfast, etc.

I bought a pretty bag to carry all books with us to appts.

That as the project portion of our journey. (btw - we still keep all the books up to date)

I'm going to post this so I don't lose it. And then I will address your other questions.

Love,

Charmi

Cynth89
Posts: 15
Joined: Jan 2012

Hi Charmi,

What a wonderful idea!! That is such a great way to keep track of everything and is great to see how she is doing and if there is improvement or if she takes a step backwards you can see very quickly. I will make sure i get a binder and notebook. I already have written some questions down that I want to ask the specialist on friday so I don't forget anything.

love,
Cynthia

Monarch
Posts: 36
Joined: Oct 2011

Okay, Cynthia, on to the next part of your post.

My mom has a liver resection and was in the hospital for 10 days. Shortly thereafter, she had her port installed and then started chemo (continuous infusion 5FU) and radiation. I took 5 weeks off work starting with the day before her liver resection. I went back to work with intermittent leave after the first week of her chemo/radiation. The intermittent leave allows me to be gone from work when Mom needs me and to go to all the doc appts.

My dad took a full 12-week leave and then went on intermittent leave.

We never let Mom go to an appt without one (or both!) of us there. Mom has been very brave throughout. But, I know she was comforted by having us there to hold her hand and dry her tears. (Unfortunately, sometimes there is pain...being stuck with needles for tests, etc.) This also allowed her to always be dropped off at the door rather than having to walk across the parking lots.

Mom did not get sick with her chemo. (No throwing up, etc) She was nauseous quite regularly. She tired easily. Mom could not shower without help as her chemo pump was always attached. So, she required assistance. Could she have gotten by on her own? Probably. But I felt better knowing that there was someone with her.

You will see how your Mum reacts to the chemo and radiation. Take her lead. Don't be surprised if she tells you "no, it's alright...I can manage" because she doesn't want to be a bother. But I can bet she will be comforted if you are close at hand. The key is to also give her some space - let her have some alone time while you're in another room or running errands, etc - so that she feels control over something.

One of Mom's biggest hurdles was that she felt she had no control over anything. Someone was always telling her what to do, where to go, when to be there, etc. So, around the house, we made sure she made decisions and felt empowered. (I don't live with my parents but am only about 10 minutes away. However, I was at their house a lot of the time.)

When you find out what the chemo/radiation protocol is, the folks on this board will be able to give you a bit more insight into what your Mum might experience.

Again, posting before I lose this. I'll address your last question in the next post.

Charmi

(I just lost my post about dealing with the news and the future. I'll put another version of it together in the morning. Darn computer!)

Cynth89
Posts: 15
Joined: Jan 2012

Hi Charmi,

Yes I have already made sure I can take time off work when Mum has an appointment or has chemo or radiation treatment and she has other friends who also work only part time who can also take her. She wont ever have to go by herself.

I am going to make meals that we can put in the freezer so that Mum doesnt have to cook,she can just re heat the meals when she wants onel.

Yes I understand I still need to give her space and not smother her,my Mum is a very independent person and she would hate to feel helpless and feel like a bother to everyone.

Once I find out what chemo/radiation treatment she is having I'll post it and see what people say about it. That is my biggest concern at the minute as she can't afford to lose anymore weight as she is already so thin.

How is your Mum doing now?

Thats fine,I look forward to hearing from you again.
cynthia

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

Hi Cynthia & Charmi

What wonderful daughters you both are! Your mothers would be very proud of you both.

My daughter too is an only child and was only seventeen when I was diagnosed, she is now 23. But she helped me tremendously, just as the two of you will.

I’m so glad that the two of you have come to this board and are able to share your experience from the side of the caregiver. You have to become an advocate for your moms so that you can help them on this journey.

I too have a binder, planner and a notebook. I found that if you don’t document everything that happens you certainly won’t remember everything. It was easier to jot down the questions before going to the appointments since they can be quite stressful.
Information is power and when you have a quick ready reference with you as a tool it can be invaluable.

Cynthia, as far as staying with your mom, it is a great idea. But remember that you have to see how things go in the beginning and how much help she will need. No mom wants to be a burden to her child and if she was independent before this happened she will still want to try and be in control. I was a control freak my entire life and it was really hard for me to give up that control to anybody. But knowing that my husband and daughter were there to love and support me, made a huge difference.

My daughter and I tried to have some special time together in between chemo treatments.
We used to go out to lunch and see a movie regularly before I was diagnosed, so we just changed it up a bit and ordered take-out and watched movies on Netflix. We tried to laugh as often as we could. You both have special things that you did with your moms so try to continue to do them even if it is a little different than what you used to do.

Let us know how it is going.
Take Care
Lily

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

Gotta agree here. You two are fantastic. It will go a long way to the success of your mothers treatments. I am lucky to have the most wonderful wife in all the world. She is there for me with everything. She has done things for me that I would never imagine anyone doing. I admire what you both are doing.

As for me, I sit here tonight with my NEW port installed. I had my first treatment today and currently am connected to the 48 hour pump. Right now I feel terrific. No problems whatsoever. The incision for the port hurts a bit but thats it. We go back to Sloane on Friday to have them show us how to disconnect and flush so that we can do it at home and avoid the extra trip to the hospital.

Best wishes to all of you and GOOD HEALTH to all of us.

Rocky

Cynth89
Posts: 15
Joined: Jan 2012

Hi Rocky.
Thank you. My mum is such an amazing person and I love her so much.I would do anthing and everything to help her out and get her better. I am so glad I have found this board and all of the wonderful people here:) Everyone is such an inspiration. Your wife sounds like an amazing person.

Thats terriffic that you are feeling great,I hope that continues:)

All the best.
Cynthia

Monarch
Posts: 36
Joined: Oct 2011

I've been thinking about you. Meant to stop in before your port install and wish you the best. Glad things went well. I'm trusting they will continue to do so!

I always tease that my mom is going to make a nurse out of me yet! Looks like your wonderful wife is on the same track! LOL And you know what? I promise that your wife and I are happy to do whatever it takes. We're all in this for the love!

Looking forward to hearing more good progress reports as you get further into this chemo protocol!

Best wishes...ALWAYS!

Charmi

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

You are a very lucky man to have such love for your wife.
I'm a very lucky woman to have such love from my husband. There were many times when I thought I might not make it but he helped me through. I'm sure you feel the same way.

Glad that the first treatment went well and almost everyone states that the port incision hurts at first but that will soon go away. I never had a port for some warped reason in my own mind (sense of permanency). What a mistake that was for me, I took it directly into my veins and they soon became trash. Towards the end we were going to start in between my toes like addicts do. Thank goodness it never got that far. I would recommend a port to anyone facing chemo.

Take Care
Lily

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

Lily, you are 100% correct about my wife. I have told her endless times that I would not be here today if it weren't for her. She wanted me to mention to everyone here on this board how inspiring all of these stories are. She has read through many of the posts and it has given her some additional hope and strength. Normally you tell people to avoid the internet in cases like this so that you don't work yourself into a frenzy of worry but we both cannot tell you how much help this particular forum has been for us. Its about knowing you are not alone and that there IS hope.

I had my port installed Wed and went through my first treatment of oxaliplatin and the 5FU. The port incision is still quite tender. I have experienced alot of nausea (have not gotten sick) and I have slept since Friday as I am extremely tired. This is now my off week and I don't go back until next Tuesday. Having the port with the pump was so easy. They showed my wife how to disconnect so that I won't have to make an additional trip after it is finished.

Well, glad to hear from everyone and keep your head up. Positive thinking is the key along with strong support which is in GREAT supply right here. From both me and my wife, we thank all of you for helping us.

Rocky

Monarch
Posts: 36
Joined: Oct 2011

Hi Rocky,

I've been thinking about you and hoping that you are doing well. Your port incision should be on its way to healing.

Mom had her port removed today. The surgery went well. We are in the Lovanox bridge period. Her INR was perfect (meaning what they wanted it to be for the surgery - not where it needs to be at the therapuetic level) so the bleeding was minimal.

Keeping you and your wife in our thoughts and prayers.

Charmi

Cynth89
Posts: 15
Joined: Jan 2012

Hi Lily,

It is wonderful that you have got through this disease and that you have been able to see your daughter grow up.
This board has been such an inspiration to me.

Yes Mum is a very independent person so we will see how she reacts to treatment but I am going to go ther and cook up meals for her so that she doesn't have to worry about anything like that.

I will definately mix things up and still do things with her so that she still feels like she is able to do things,even if it is just getting something to eat and watching a movie at home:)

Thanks again for all your information and helping me out,you are a wonderful person!

Cynthia

Monarch
Posts: 36
Joined: Oct 2011

Cynthia,

Just wanted to wish your family well today. Let us know what you find out.

Charmi

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

Hi Cynthia,

Yes it is wonderful. I was in the midst of treatment when she graduated from High School which was quite emotional. This December she graduated from the University and that was really emotional as I never knew if I would still be here to see it. Now the goal is to see her get married. Grandkids can wait awhile. It is always good to have goals!

That is really great that you are going to cook for her. You are making sure that she won't have to deal with it. Just make sure that you do smaller portions for her, otherwise she might feel that she is being wasteful. If she wants more than it is already in another container for her. My husband lost weight right along with me as he really can't cook. He tried but he could really only cook a couple of things. The one thing he was good at (spaghetti) became a staple. After I got better and was cooking again I don't think we had spaghetti for about a year. LOL

You are very welcome and we are all here to help each other on this journey.

Take Care
Lily

Cynth89
Posts: 15
Joined: Jan 2012

HI Lily,

That's wonderful that you have been here to see her graduate from university as well and it sounds like you will be here to see her get married and eventually have children. Yes I believe that having goals is a good way to stay positive and to have something to aim for.

Yes I'll do smaller portions and that way she doesn't have to worry about cooking. Did you lose a lot of weight during chemo? I'm concerned about that because my Mum only weighs 44kg and she hasn't started treatment yet so she can't afford to lose much weight.

Ha ha that's funny about the spaghetti, I'm not the best cook either but I have bought some cook books so I'll give it a go and hopefully will be able to cook a few things( fingers crossed).

Take care,
Cynthia

aklitz
Posts: 9
Joined: Jan 2011

Hi Lily,
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'd 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 Lily,
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'd 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

northa914
Posts: 89
Joined: Mar 2011

Just wanted to let you know I've had the same trouble with posts, and I figured out a solution. I write what I want to say in a Word document, then cut and paste it in the comment section of my reply. That way if it ends up not posting, I still have a copy of it and can cut and paste until it finally works. Hope this helps! :)

LucyDoodle
Posts: 22
Joined: Jan 2012

Hi All
It's good to hear all the positive news being posted.
Steve also had a port put in this week as it was getting difficult to get the IV access.
He has had a bit of numbness in his toes and little fingers this week, I will remind him to ask the Oncologist about L Glutamine when he sees her as it sounds like that might help.
Maudsie thanks for all the information you posted about your chemo, it helps to know what others have experienced.
Just out of interest has any one had molecular profiling done?
Ok last question, can someone tell me how to do a new post.......I only seemed to have worked out how to reply!! My 16 year old will roll his eyes if I ask him :)
Debbie

LucyDoodle
Posts: 22
Joined: Jan 2012

Hi Maudsie and Lily,
I just wondered what dose of L Glutamine you took (and anyone else who has used it).
Steve's Oncologist was ok with him trying it but didn't mention a dose, the posts I have read on other boards seem to suggest 5g up to 10g from one to three times a day. Also do you take it continuously or just when you are on chemo weeks?
So many questions....sorry.
Debbie

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

HI: I took L Glutamine Fermented powder throughout my chemo treatment with oxaliplatin + irenotecan + 5Fu pump. I took 5 grams/day mixed in juice but I'm sure you can take up to 10 grams/day and several times a day. I also took vit B6 (1 tablet/day), alpha lipoic acid (1 pill 3 times/day), and calcium/magnesium (1 pill/day). I wasn't cold intolerant at all and don't have neuropathy. I still take all of these.

To post a new discussion thread, look for the little box that says that in the upper left hand corner and type in a new subject.

Cheryl

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