My mom tried Gem/Cis for about 8 weeks last year. It was HARSH. Although I'm sure I could never capture exactly how she felt on it, it seemed like she felt like she had the flu just about every day. There is no way she could have worked throughout the process. The key is REST.

She did experience a low white blood cell count several times to the point where she had to add a couple of off weeks to the regimen. It does have a tremendous affect on the GI system and it took awhile for her not to experience pain upon eating.

However, her results made the whole experience worth it. Her CA-19 marker was back to normal (after being about 1100 before) and her lymph nodes came back clean on the scan. So far, so good. I don't want to jinx her but I feel that cisplatin can work for those who are able to withstand it.

She had a major check-up at the halfway point to see if the chemo was effective. I recommend making sure that your family member gets one too so that they won't continue with a regimen that makes them feel worse without the added benefit of making them "better".

Be positive because it CAN help some!

I wanted to second what Ron wrote. My mom was received Gemcitabine/Cisplatin for about 6 weeks and experienced continuous pain in her side and rib area during treatment and for months after. We were told that there is always a possibility that the shots they give you to boost your bone marrow can create bone spurts; thus, pain appears suddenly.

When that logic didn't apply to her pain any longer, we felt convinced it was mets to her bones. Lo and behold, a bone scan showed some small fractures in her ribs (she has osteoporosis) that were NOT caused by mets. And she also experienced back pain that eventually subsided.

I hope some of this can ease your mind until you know for sure.

Abigail

3

(6 replies, posted in Chemotherapy)

My mom was on Xeloda, Gemcitabine and Cisplatin (though not at the same time!) and experienced this with each regimen.

It helped to wear thickly padded socks or slippers when she walked. Her feet looked swollen and red, as well, which were side effects of the treatment for her. Basically, we had to wait it out, as it got better a few days after her chemo was administered. If it becomes unbearable and does not improve, you could always discuss reducing the dosage to make it more tolerable.

I know this is not great advice...I hope she feels better soon!

Abigail

She is doing much better. It has taken her about a month to feel more back to normal since her last chemo treatment. She actually is on vacation in Montreal for an entire month which is a tiny victory for her (she's an avid traveler). She's close to your mother in law's age; will be turning 61 in January.

She was on Xeloda for six weeks earlier this summer and took a six week break. She began a 7 week cycle of Gemcitabine/Cisplatin, which ended in late September. That is an incredibly taxing regimen but her scan showed marked improvement...no visible cancer in her lymph nodes, with an 8 mm. "fuzzy area" on her lungs. She is having a follow-up scan to check on that at the end of this month, as it could just be inflammation.

Basically, chemo was the right choice for her, as her tumors significantly shrunk. It's definitely not an easy choice to make but it has worked thus far. Just wanted you to know we were given a VERY bleak outlook and (knock on wood) she has come a long way since then. Always have hope!

Abigail

My mom was diagnosed with Stage IV primary gallbladder cancer in March and we met with Dr. Abou Alfa at Sloan Kettering in July for a second opinion. He sees so many patients with these rare GI cancers, so that's a huge reassurance...my mom lives in Tuscaloosa, Alabama and as you can imagine they have never seen a case like hers. He is a very straightforward doctor and as her second opinion, could only make a suggestion towards what kind of chemo treatment she should continue on. Her doctor in Alabama used Dr. Abou Alfa's suggested course and her most recent CT scan showed lots of improvement.

You mentioned that the primary may be pancreatic. We also went to Dr. Daniel Laheru at Johns Hopkins in Baltimore, who sees many pancreatic patients. He was very encouraging and a little more approachable than Abou-Alfa. He has also made himself available to us many times since my mom's visit, as we've called on him with various questions since then. In addition, her insurance actually covered most of this visit but did not cover Sloan-Kettering.

I know this is not much help but we have heard the term "palliative care" many times. Obviously, like you, we are looking to lengthen my mom's life, not just make it more comfortable. The treatments have not been easy to get through but it has helped her accomplish the milestones that the doctors were so unsure of at the beginning.

Best of luck,
Abigail

My mom saw Dr. Abou Alfa back in July. Many consider him to be at the forefront of this field. However, my mom's second opinion had more to do with her chemo treatments and nothing to do with surgical oncology.

Here is his link: http://www.mskcc.org/prg/prg/bios/631.cfm

Good luck! And if they give you a long wait time to see him (or any oncologist really) definitely go the email route and drop him a line. It worked in getting my mom seen a little faster.

Abigail

7

(4 replies, posted in Chemotherapy)

Thanks so much. She's already starting to feel better. Jeff, you wrote in an earlier post that it's just as important to anticipate all the side effects of these treatments...so right about that. The doctors never really seem to warn you about everything so this forum has been a Godsend to compare notes with those who really go through it.

Thanks again,
Abigail

8

(4 replies, posted in Chemotherapy)

Hi everyone,

My mom just finished an 8 week regimen of Gemzar and Cisplatin. Wow--talk about a rough two months. Now we're trying to deal with the residual side effects. I know that chemo kills the cells that line your stomach first...and now she is having a hard time eating anything. I have to skip the formalities and come out with it...anything she eats causes diarrhea. The doctor prescribed Carafate and suggested that she avoid fruits and vegetables and eat "junk food". Something about how since junk food goes straight through the digestive system it spends less time irritating the stomach. Has anyone tried other medications to alleviate some of these post-chemo troubles? Unfortunately, the docs here offer few alternatives...

Thanks,
Abigail

9

(11 replies, posted in General Discussion)

My mom just wrapped up an almost 8 week cycle of Gemzar and Cisplatin. She did two weeks on just Gemzar, once a week and the third week she had two days of Gemzar and Cisplatin. Had the 4th week off. I have to say cisplatin is extremely harsh. She actually decided to get off of it two weeks early due to its side effects. Cisplatin causes extreme nausea but she actually never threw up from it. I can't say I'd recommend this regimen to everyone...but she had her tumor marker checked on Monday and it drastically changed--it's back to normal for the first time. She also has lymph node involvement and will be getting a CT scan next week. The first week of that combo created extreme constipation from the anti-nausea drugs given in her IV. Just be prepared for that. But in hindisight, these new test results have given us some hope. I'm not completely relying on the tumor marker results but it gave me my first real sense of joy in a while. It's almost made the past two months worth it.

Is your daughter supposed to be induced on the 11th or is that her due date? My gut feeling (and it's just the one I have at the moment) is that maybe you should be there if she is definitely supposed to have her baby while you are there. I think that the major effects of chemo won't hit him until several weeks into October. If you can trust someone to help your husband, I think he will be okay. He will definitely need you further down the road and you may not be as ready to leave him at that point. If you decide to go, reassure him that you will be there for those moments when he's not feeling well.  The trip might provide you with an extra boost of happiness that you deserve! At the same time, I do agree with the sentiment that your husband may need you more. I just worry that you won't be as able to leave a month into this treatment.

I'm hoping for all the best for your family. I read a NY Times article that said that cisplatin has literally melted tumors.  If nothing else, let that be an encouragement during these hard times.

Abigail

I work at a Family Medicine clinic and have been around my mom plenty of times when her white blood cell count was low. Unless you have a fever or symptoms of something else, I think it's safe to be around her.

I tell you...the weeks where my mom has had to skip treatment from a low white blood cell count were actually a treat. That sounds so odd but it gave her an excuse to take it easy at home and not work her schedule around chemo. In the meantime, are they giving her something to boost her bone marrow?

Abigail

My mom is also on Cisplatin and Gemcitabine. After almost two months of this combination, we're very close to throwing in the towel with this particular regimen. I think those stomach pains you described are very indicative of what cisplatin can do to one's digestive system. They say the first cells to be killed off during chemo are the ones that line your stomach and that can wreak havoc. My mom's lost so much weight and even eating something like a banana can make her stomach hurt. Her oncologist's suggestion is to eat less fruit. Sounds crazy but I suppose it can aggravate stomach problems somehow.

And as far as the lack of optimism goes...I think cisplatin definitely induces depression, no matter how strong-willed someone can be. The break will absolutely do him some good, even if it's for a short time. My mom is taking a two-week break and we could not be more relieved for this short "recess".

I read in a NY Times article that cisplatin has been known to literally melt away tumors. Okay, so maybe that was based off of testicular tumors but so what...it was an encouraging phrase that I remind myself of when I wonder if cisplatin was the right decision...

All the best,
Abigail

I don't think any insurance company can deny you coverage or charge excessive premiums for family history. There may be some law that supports this but I'm not sure. I was told this because my mom was later diagnosed with another primary cancer (breast) and we conducted genetic testing for that. They told me that whatever the result, it won't affect my future coverage.

And another thing for you to think about...the fact that you are very aware of this condition makes it less likely that it will be caught at a later stage, I suppose. I have to tell myself that I even though 50% of my DNA comes from my mom, the other half is from my dad, giving me a shot on never having to worry about this kind of diagnosis...

Abigail

13

(4 replies, posted in Introductions!)

I know exactly how you feel. Just know that it somehow gets easier. My mom, age 61, was diagnosed with gallbladder cancer that spread to her lymph nodes after what we thought would be a simple surgical procedure. It's hard to wrap your head around a sudden cancer diagnosis and at an advanced stage, at that. My mom went to the doctor on a regular basis and always did the cancer preventive tests...we were angry at first but so many people are diagnosed at this stage because it's usually asymptomatic or is presented as a "digestion" problem.

One thing that helped me since her March diagnosis is making the decision to get some "power" back. This disease can make you feel so incredibly helpless. I got some books on nutrition to help boost her immune system, bought some supplements from the local health food place, joined this forum, etc. She did start radiation and chemo, although that decision did not come easy.

And even though my mom's doctor gave her a very bad prognosis, we travelled to NYC four months post-op and we walked miles and miles during the heatwave! When her diagnosis was so fresh, I could not have imagined that she would be able to do that. So you never know...your mom's strength in the coming months will surprise you.

The pain I felt was because I kept on worrying about the long-term and I could not get her prognosis out of my mind.  I really suggest taking things "one day at a time".  You WILL have good days and so will she. Having found this forum will definitely help you. The people here are supportive and inspiring and I wish I had found it earlier on.

Sorry for the long message but sometimes hearing from someone who can sympathize rather than just empathize helps.

Thinking of y'all,
Abigail

Hi all,

We recently bought 1 bottle of AHCC (30 capsules for around $50) at a local health food store. I'm thinking that we're going to need to take the online route for larger quantities...can anyone recommend an online vendor that they've used in the past? I know they're easy to find thorugh a search engine but I wanted to make sure it's a vendor that other people can possibly vouch for.

Here's to hoping the AHCC helps....

Thanks,
Abigail

Hi everyone,

My mom has encountered so many problems with her new round of chemo and so I'm turning to you guys for some advice. She had a first round of Xeloda for six weeks, Monday-Friday, and tolerated it very well. Her oncologist's nurse said she could discontinue Xeloda since her radiation therapy ended. Three weeks ago she started gemcitabine (once a week for three weeks, one off) and cisplatin once every 3 weeks.
She had the port put in on Monday and came in for gemcitabine and cisplatin today. Much to our surprise, her blood tests showed that her blood cell counts were too low to get her treatment. Instead, she will receive some shots tomorrow and the day after to boost her cell count. We're bummed (to say the least) but at the same time we're wondering if she should go back on Xeloda, which did reduce her CA-19 marker significantly. Before she started this new chemo, her doctor did say she could have stayed on Xeloda.

Have any of you heard of skipping a treatment for this reason? Did any of you take any alternative immune boosters during chemo? That's something else we've considered  but there's just so much out there that claims to "work". And finally, her hair has just been falling out in clumps...although we're not worried about the whole vanity aspect, I was wondering whether after just two treatments if that was a little early to be losing so much hair?

Sorry for all the questions...just so much to think about.

Abigail

Thank you so much Laura. My mom really believes in the influence of good nutrition on cancer.

I had a question about a couple of things on the nutrition list...did the doctor say or do you know why eggs or green tea would be things not to consume? Those are things my mom eats/drinks pretty frequently.

I completely understand wanting to take matters into your own hands, especially when doctors say there's not much else they can do. I'm glad that your dad is responding well and hope he continues to do so.

Have you guys thought about Iscador, the mistletoe extract? I've read some good things but it's not approved here so...
Noscapine is another easily accessible drug in Europe that has been suggested with very little side effects.

Abigail

17

(5 replies, posted in Introductions!)

Hi Joe!

I saw that you were in Australia...I was born in Canberra and from there moved to Louisiana and now Alabama. It was a big jump and my parents, who have more clear memories from our life there, have an incredible fondness for anything Australian. So naturally I have already taken a liking to you!

My mom was diagnosed in March '07 at Stage IV, as it spread to her lymph nodes. And here she is, over four months later and her quality of life is great after one completed round of chemo and radiation. She started  chemo again this week. We don't know what to expect but are hopeful. She has already hit milestones that the doctors were unsure of. So there's always hope...

I'm the same age as one of your daughers...just turned 26 in June. So I'm sure I can relate to how she feels. The unknown is so scary and it's hard to see your parent go through this. If any of you want, you can contact me via email at any time.

Good luck to you and my family will be thinking of you.

Abigail

Gallbladder cancer can make you feel so alone...so what a relief to have found this website. My mom, age 60, was diagnosed after gallbladder removal in March '07. She was asymptomatic, as are many other patients, but it was classified as Stage IV. The only known area it's gone to are her lymph nodes in her stomach...but as one lovely nurse in the hospital said "It's going to go everywhere. There's nothing you can do." I'm 26 yrs. old and felt like our family was cursed. But I've read many of your stories and now I'm starting to feel lucky...many people don't live long past diagnosis. So it's been 4 months and six weeks post-Xeloda and radiation, her CA-19 marker continued to decrease. We're in a dilemma right now...would love some advice from anyone...she began infusion therapy this week...she's taking Gemzar once a week for three weeks, one week off and cisplatin once every three weeks. We've read HORRIBLE things about cisplatin. She's really healthy (as healthy as one can be with this disease) and I'm afraid this will start a downward spiral for her. We're debating on whether she should already stop the cisplatin before the severe side effects kick in. Should we quit while we're ahead? Her quality of life is great so far but who knows. Or maybe she could try a different "platin" drug like oxyplatin? Thoughts? Thanks in advance!

Abigail