1

(11 replies, posted in Suggestions)

Thanks for the responses.  I think we all have the same difficulty in that this could be a full time job and I already have one of those.

I have asked for clarifying information regarding a couple of posts and people did respond with helpful info, but this isn't generally practical.  My suggestion is that the registration be modified to include some basic non-intrusive details such as type of disease and treatment course.  This info could then be appended (automatically) to any posts and allow readers to focus on the relevant posts rather than trying to guess relevance or go through searches of prior posts.  Obviously the content of this would need to be carefully thought out.

The key issue is treatment possibilities with the pluses and minuses of each. This is extremely important given that the Oncology providers have very little to work with and no one seems to know what conclusions are coming from trials. I guaranty you that my Oncologist has no idea, as he has openly expressed his limited options, and that I am about out of them.  I see this same thing throughout this forum.

I think this would be of value to researchers as well since I am not aware of any central clearing house regarding efficacy from health care providers. It seems the entire "system" (term used loosely) is running open loop and I think this is detrimental to our common goals. There was a great article in a recent Scientific American where this very problem was discussed.  I am left with the feeling that there is a certain amount of tail chasing going on. I realize that this forum has nothing to do with the system other than being a place to vent about it.

2

(11 replies, posted in Suggestions)

I (and I suspect a lot of others) come to this forum looking for solutions. The large majority of the posts however, give no background regarding treatment, disease background, etc.  As a result it is impossible to derive much from this.
Most of the posts go something like "I just got back from the doctor and I am stable" or "My NIH trial is really going well". Needless to say this doesn't help a desperate person searching for answers.

I'm not sure what can be done to improve this but maybe the moderators could draw out some pertinent information so we can benefit from these successes.  Identify which trial, what form of disease, the therapy that worked, and so forth. I am personally one year into chemo (8 cycles of Gem+Cis; 6 weeks of holiday; 10 or 11 Gem + carb) and that is starting to not work.  I am looking around at trials but would like to get into one that offers some expectation of success. Without some sort of experience confirmation this is not possible as the results are not posted until after the trial is complete.

Marijuana and extracts thereof are extremely effective regarding these symptoms. It is possible to get this in the places that allow medicinal marijuana. You have to experiment with the dose as too much will knock her out and too little iis obvious. This is good for nausea and sleep poblems in addition to creating the munchies.

Marijuana is extremely effective regarding nausea. My sister got some cookies made from some sort of extract from a chemo patient in California. I keep them in the freezer and eat about 1/4 of one the evening after infusion. This also helps with lack of sleep due to the steroid they give me.

5

(2 replies, posted in Chemotherapy)

My experience has been 8 cycles of Gem + Cisplatin until the side effects became severe. This is primarily neuropathy.  At that point the treatment had been very effective but I was told that was the end for that combo. Each cycle was 2 + 1 off which seems to be the standard thing.

There was a 6 week holiday followed by Gem + Carboplatin ever two weeks. The cancer is now increasing at a fairly slow rate, but obviously not going to be succesful in the end. I am currently looking for alternatives primarily through clinical trials.

After one year I am still working and get to play an occasional round of golf. The psychological effects are sometimes difficult but after the initial shock of diagnosis, not overwhelming. I still hold hope for a magic bullet but the glacial pace of research doesnt holdmuch hope.

Yes I agree.  I didn't mean to pontificate as I'm certainly no expert in this field.  Cancer patients, including myself, are looking for others that point the way for them.  Nothing would make me happier than to see a case like mine that points the way to the future.  I'm still waiting.

Thanks for the encouragement and yes the strong positive result from chemo was a big boost.

One thing I have learned from all this, and my doctor says something like this every time I see him, the disease is not one thing and comparisons are for the most part meaningless.  Dr. Javle mentions this in his presentaion on this site, that this is one of the big frustrations in the research for cures.  How do you extract meaning from a trial when there are multiple diseases in the study?

My version of the disease did not originate in the Liver although the Liver is involved. This apparently affects how and where it moves and I suppose the efficacy of the chemo.  I think the point of this is to keep after it and if one approach doesn't work, go another way.  I recently had a surgical consult at Johns Hopkins and he predicably told me I was not a candidate for that.  Then I recently read an article about a lady who got a surgeon at Stanford to operate multiple times and this has apparently prolonged her life.

I am also extremely sure that keeping active is a big part of this.  It would be very easy to collapse on the couch due to chemo affects, but maintaining physical activity seems to enhance the immune response and I see a common theme with this regarding the so-called miracle survivors.  They are all physically active.

Cathy,  Your status is similar to mine.  Finished 8 cycles of gem/cis with extremely good results but there is no next protocol.  I have decided as you have to continue with chemo.  I don't want to let C get the upper hand so have decided to keep pressing.

How are you doing with side effects of Cisplatin?  I have some fairly bad neuropathy so decided to go with Carboplatin for now.  I have no idea how this will turn out but start back tomorrow morning after a 6 week holiday.

I was diagnosed with Stage 4, Metastised Bile Duct/Gall Bladder carcinoma on 8/28/12, just after my 65th birthday.  I am a otherwise a very healthy and active person.  The cancer had spread along the peritoneum causing problems with my colon, stomach, lungs, etc.  The colon problem is what led to the cancer discovery by my GI doctor.  Exactly where the cancer has spread is undetermined but as the doc who did the biopsy (needle in the liver) said "you have quite a mess in there".  The CT's showed a lot of ascites all around the Peritoneum.

I have been through 8 cycles (cycle = 2 weeks and one off) of gemzar-cisplatin which was complete at the end of February.  I am just finishing a 6 week holiday and start back with chemo tomorrow with Carboplatin replacing Cisplatin.  The Cisplatin side effects necessitate the change.  Neuropathy in the feet, legs, and fingers are the main problems.  These started to show in the 7th cycle and my feet are pretty numb at this point.  I am still walking to work and have generally been able to stay active although I had to stop some things that were too taxing.  I think staying in motion is a good thing and people who know me have a difficult time believing I have cancer and am in chemotherapy.

My progress with chemo has been "amazing" in the words of my oncologist, Dr. Mohamed Bazzi of Antietam Oncology in Hagerstown, MD.  I am also seeing Dr. David Cosgrove at Johns Hopkins for second opinions, who has supported the therapy plan developed by Dr. Bazzi.  The CA 19-9 marker has gone from 6709 to normal (less than 37) over the course.  The CT scans also show a lot of reduction to the point I can now see the Gall Bladder where initially that was just a big blob.

Dr. Bazzi arranged through one of the pharmaceutical companies for a DNA analysis but that was disappointing.  The main problem being that there are very few approved gene specific therapies.  It would be extremely lucky to hit one of those such as Her2, but not in my case.

The main issue right now is what to do next.  I have decided to keep up with chemo as long as it is effective and I can stand it.  Dr. Bazzi says that eventually the chemo will no longer do the job and we will have to find another therapy.  My hope is that something becomes available between now and then.