March 30, 2009 at 11:18 pm #27789
Thank you all for your kind words and warm welcome. If we have to go through these trials and tribulations I’m grateful we have each other for support.March 29, 2009 at 5:07 am #27788roma35Member
Jamie, great story!! We cant get enough of stories like yours. You have a great attitude, and as we all know on this site, that Can at times make all the difference. I imagine everyone was happy to have you at your daughters graduation!
Keep good news coming.
BarbaraMarch 29, 2009 at 4:55 am #27787tiapattyMember
Welcome and thanks for posting your experiences, it is clear that they are already proving helpful to others. You sure came out swinging against cc, keep up the fight!
PattyMarch 29, 2009 at 1:32 am #27786lisaParticipant
Thanks for the great info, Jamie. I’m going to have to start trying some of those supplements you mentioned.March 29, 2009 at 12:34 am #27785darlaParticipant
As I said before, great attitude & I love the story about the “oops”!
DarlaMarch 29, 2009 at 12:29 am #27784Walk wrote:Jamie, good for you! What types of supplements did you take?
When I first found out I had a tumor in my liver and abnormal liver functions the first thing I took was milk thistle. Kind of a funny story. I had a cat that was diagnosed with liver cancer a couple of years before. The vet thought she might have a couple of weeks to live but wanted to start her on milk thistle to help her liver. He’s a strong believer in homeopathy and Eastern medicine. Well, she ended up with us for almost a year. So when I found out I had a problem with my liver my husband called the vet and the vet found out the dosage for me. Husband picked up a bottle from him and I started taking it (from the vet)! Hey, I was willing to try anything. I now get milk thistle seeds from my chiropracter/accupuncturist. I chew 20 seeds a day. She feels that chewing the raw seeds is much better than the capsule form. I started getting accupuncture after my diagnosis to help with the pain and nausea. My son is a nutritionist and works for a nutrition/supplement company. He made me start on a product called Genesis. Biblically based ingredients and scientifically based. It has resveratrol/ellagic acid and other stuff I don’t remember. He had me drinking about 8 oz a day to start. I now take 4 oz day. Normal dose is 1-2oz day. The chiro started me on Essiac tea with Echinacea and Cleavers. Cleavers helps the lymph system. Echinacea helps the immune system. After I started chemo she started me on some products for GI system to help with the side effects of chemo. Also a vitamin d supplement and digestive enzymes and an omega supplement I get from my son. After my liver functions improved I started on a quarter dose of a multivitamin. Now I’m up to a full dose. She didnt want to stress the liver. I also took additional echinacea drops when my counts dropped. She gave me HV Chelate when I was on chemo and additional immune boosters. Something called Thymex and Immuplex. My white count and platelet counts are still a little low so I still take these. I also drank Kefir to help GI system especially when on chemo and take probiotics. I’m trying to think if there was anything else. I can’t think of any but if I do I’ll post it. One thing you need to know is I was not a health nut or into nutrition when I got sick. I had worked as a Registered Nurse before so was much more in tune with typical Western medicine. I had worked with Oncology patients. I had NEVER even considered accupuncture or even chiropractic care for myself, although I have a horse that has had both from our above mentioned vet Also, I had lost 20 lbs before and right after diagnosis. I gained it all back over the next 7 months, while I was on chemo. I would have been happy with only 10 pounds but I’ve decided to not complain about such things as an extra 10 lbs or the big “frown” scar on my abdomen. I just tell people I was a Magician’s assistant and he had an “oops” when he tried to cut me in half. My surgeon really liked that story Anyway, hope this answers your question. Let me know if there’s anything else I can do.March 29, 2009 at 12:27 am #27783darlaParticipant
Thanks for sharing your experience with this cancer with all of us. I agree with what everyone else has said. It is always good to hear something postive. I am sure that your great attitude has helped you along the way. As I am sure you know from all the reading on the site, there is no rhyme or reason to how this cancer affects everyone differently. You have proven that there is hope and everyone dealing with this awful type of cancer needs hope.
Good luck to you and I will be hoping for more clean scans for you in the future. Keep that great attitude.
Love & Hugs,
DarlaMarch 28, 2009 at 9:21 pm #27782Lisa wrote:Hi Jamie,
What happened to the metastasis to your lymph nodes? Was chemo able to cure or were they surgically removed? BTW – congrats on clean scans! that is what we hope and wish for.
Thank you. Each scan has been a time of great relief and thankfulness. The lymph nodes didnt show any activity on the Pet scan I had before surgery. I don’t think that my surgeon would have agreed to do the surgery if they were still “lighting up” on the Pet scan. I do not know for sure what helped them, if it was the chemo, alternative stuff I did/do, the power of prayer and divine intervention, or all of the above. Having them surgically removed was never offered as an option to me. Maybe because they were in my chest, around the heart and a couple in the neck they couldn’t be removed? Or maybe because the first surgeon just felt I was a hopeless case. Based on what the Doctors have always said I do worry that it’s still floating around in my lymph system but I just continue doing what I’ve been doing to try and beat this monster. I keep tellling myself that it can be beat and I will prove them wrong!
JamieMarch 28, 2009 at 9:02 pm #27781walkMember
Jamie, good for you! What types of supplements did you take?
thanksMarch 28, 2009 at 7:47 pm #27780lainyParticipant
Dear Jamie, welcome to the best little club in the world that no one wishes to join. WOW! That is some story and what a great attitude you have. I am just in awe at what you have been through and the fact you have had clean scans. You are a ray of hope for everyone. Wishing you good luck on the next scan and please keep us posted.March 28, 2009 at 6:59 pm #27779lisaParticipant
What happened to the metastasis to your lymph nodes? Was chemo able to cure or were they surgically removed? BTW – congrats on clean scans! that is what we hope and wish for.March 28, 2009 at 6:54 pm #27778marionsModerator
Jamie….Welcome and thank you for lifting the spirits of anyone reading your posts. I wish for your continued success and can’t thank you enough for sharing with us. I am so glad that you have found us.
MarionMarch 28, 2009 at 6:35 pm #2164
I’m so glad I found this site. I’ve been reading it for a couple of months but decided it was time to post and introduce myself. The support you give each other is amazing. I was finally diagnosed in Oct 07 with stage 4 intrahepatic cc. They told me it was cancer after they biopsied the tumor but couldnt figure out what kind it was for over 3 weeks. I had a tumor that was almost 15cm in my liver and metastasis to an area on my colon and multiple lymph nodes in chest and neck. They did an open and close suregery after they diagnosed cc. Surgeon said there was spread (seeding) to the abdominal wall and colon. Surgeon was real caring and came into the recovery room told me it was real bad, my family was devastated and left. Real compassion! That was the only time I saw her that day. Was told I may or may not make it to see my daughter graduate from high school in May. Chance of 5 year survival was zip based on Stage and inoperable. I chose to politely disagree that there had to be a first. I also told them that they may be my Doctors but that God was my healer. I think they did an eye roll. I had already begun taking some supplements when I first found out about the tumor. Have gotten into a few “discussions” about them with a Diatition and Drs at the hospital since then. I was sent to an oncologist a couple of weeks after attempted surgery and started on chemo (Gemcitabine and Xeloda). Changed oncologists after a couple of months (needed one that wasnt so negative). Over the next 7 months the tumor shrunk! A real miracle!! I was referred to a different surgeon that was willing to consider surgery again. In June 08 I had 65% of liver resected, gall bladder removed, tumor on colon wasnt attached and he was able to “lift it out” and they found another tumor that was near the duodenum that also was lifted out. Sent home on day 6. Had a few “bumps” in the road with recovery. I wanted additional chemo after surgery but only got a couple of doses because blood counts got too low. Just wasnt able to tolerate it so didn’t get anymore. (Dr hadnt recommended it anyway based on statistics) Good news is I’ve had clean scans since the surgery. Next one is in May. I always get a little nervous before them. I try and remind myself that I can do what I can and the rest is up to God. I sure wish I had found you earlier. Would have been nice to have had the support and information during the initial shock of diagnosis and treatments. But I’m glad to be part of your wonderful group now. Hope I can add something to it. Sorry this post is so long. Trying to fit 18months into one post
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