August 26, 2008 at 11:07 pm #15883jeffgMember
Handyman, Sorry to hear about your wife. It is harsh treatment. In fact some patience with colon cancer actually stay in the hospital for 3 days while doing the treatment. Other treatments for me might include trying Tarceva, but that is an if/maybe. I’m currently doing holistic IP-6 with inostal, Milk thistle, Mushroom extracts, vitimin D and Potassium, and alot of 130% dark grape juice. I’m am also doing EFT (Emotional Freedom Tapping), along with visulization, and white sounds ,like the ocean. I’m trying to realign and increase my body’s energy and build my immune system before I try anything else.
I hope your wife has some success with this treatment.
Bless You Both,
Jeff G.August 26, 2008 at 9:18 pm #15884handymanMember
Re my wife’s regimen of 5 FU, Irrenotecan & Leucovori, she experienced many of the same increased symptons you did. That is increase abdominal pain, water retention & swelling of the abdomen and legs, loss of appetite, extreme fatigue.
After her first session, her immune system was so flattened she picked up an infection and had to be hospitalized on antibiotics for 4 days. Since that time, her platelet count has been too low to continue the full program. They have resumed the 5 FU part of the chemo. She will try again next week for session two of the full chemo cocktail. Later in Sept, she will be scanned to see if this is doing any good.
In the interim, we don’t know if the tumors in her liver and lungs have slowed their growth or not. This is a tough program, one used mainly for colon cancer. We still hope it will work. It is her only chance, we think. It may just lengthen her life and is not expected to be a cure. She wishes to take this action.
Have you found any other clinical trials that might apply to your & her type of cancer?
HandymanJuly 24, 2008 at 3:53 pm #15882jeffgMember
Handyman… I noticed the chemo regimen that has been recommended for your Wife. It is the regimen I just finished trying. In fact I stopped further cycles that were ordered as it accumunlatively each cycle increased my pain of tumor areas and the classic chemo side effects worsened each time. It really played havoc with my digestive trac. It also caused severe dryness of mouth and my lips started to crack. It increased fluid retention of lungsas well. I requested Ct Scan and will dicuss results with Dr. today. Just a reminder they don’t need cycle after cycle to determine if it will help. I personally think two, three cycles at the most is plenty enough to tell. I personally feel this regimen was an agtagonist that did no good but cause me more pain. Now Saying all this, we know different chemos work differently for each individual and I wish your wife the best. I just felt I needed to share my experience. Make sure you have plenty of anti nausea meds ready and on standy by. I managed to keep from vomiting with them.
Jeff G.July 24, 2008 at 5:29 am #15881tiapattyMember
I agree that the trials seem very restrictive. The surgeon who operated on my Mom said she would not qualify for any trials because she has heart problems and has a pacemaker/defibrillator.
I already posted somewhere else on the board that I wish my Mom had tried photodynamic therapy (PDT) instead of chemo/radiation, the side effects are minimal in comparison and maybe she wouldn’t be so weak from it. In the Medical Updates section, there is an article, here is the outside link:
The article is dated April 15, 2008 and makes it sound like this treatment is not yet available here in the U.S. but I called the Cancer Treatment Centers of America and they offer it in Tulsa and I believe the Mayo Clinic and others on this board might be able to suggest other places that offer it. Also, type PDT into the search box for more posts on it.
PattyJuly 23, 2008 at 3:16 pm #15880handymanMember
My wife has bilary duct cancer, has had liver resection, Mar 07, 3 bouts of chemo, Gemzar + Zeloda, plus radiation and did well for about 6 months til a recurrence this Jan, 08.
We follow clinicaltrials.gov and have visited two sites of these trials in person, Barnes in St Louis and M D Anderson in TX. It seems they want patients whose liver functions are more close to normal and also people who have not had more that one regimen of chemo. In some cases, they require people who have not even tried chemo yet.
Am I missing something in these clinical trial parameters? Have you found any clinical trials for people who have been through several chemo regimens?
Currenlty, my wife has started a new chemo regimen, recommended by M D Anderson of 5 FU, Irinotecan and Leucovorin. This is mostly a colon cancer regimen but they are hoping this may stop or slow her tumor growth. The disease has metastisized from her liver to her lungs and she has been told there is not much more they can do.
I don’t feel we should accept that.
Thank you for any info you can provide.
HandymanJuly 3, 2008 at 1:45 am #15879bbfransonParticipant
I have been on this clinical trial since May of 2007. On Memorial day (May 26, 2008) I received a liver transplant. That was almost 6 weeks ago. I am feeling great!
The cancer treatment is quite aggressive and it really has been a rough year. I completely trust the doctors and feel that I received first rate care.
If you have any questions, I will try to answer them.
ScottJune 6, 2007 at 3:15 pm #506saraMember
If you visit this site (clinincaltrials.gov), you can see some of the cholangiocarcinoma trials currently available around the country.
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