November 22, 2016 at 5:48 am #93266marionsModerator
CarlaandJeff…….wonderful news and thanks so much for sharing with our community. Most likely new genetic alterations will be discovered, hence I would consider a periodic interaction with Jeff’s healthcare team. Everything sounds great, wishing for continued success. Enjoy life.
MarionNovember 22, 2016 at 2:59 am #93268lainyMember
Ah, thank you Carla, I understand a little better now but that brings me to one more question, Sorry trying to help. Have you thought about or have you had a 2nd opinion?November 22, 2016 at 12:33 am #93269carla4jeff49Participant
Thanks for your response and I appreciate and understand your concern. It was recommended that Jeff be scanned every 3 months for a year after radiation, then taper to 6 months if all was well. He decided last December to push it out 6 months, and again in May when the results were good. It is possible he will choose to be scanned in 6 months (May), or sooner if he feels the need.
Each case is different, but from what we understand, the chemo for CC is not effective for him, and he can not receive any more radiation on his liver until a minimum of two years has passed, which will be the end of April 2017. He did have genetic testing done and did not qualify for any other type of treatment available. There really isn’t much they can do right now treatment wise, and since he feels ok, he prefers to limit his radiation exposure and right now is comfortable with that. He may change his mind.November 21, 2016 at 10:50 pm #93270lainyMember
Dear Carla, your post is another good news story. CONGRATULATIONS! The only part I don’t understand is the protocol after surgery or just scans is to continue with scans for quite a while at least every 6 months then tapering off to a year. Not doing a scan and or biopsy but letting this tumor sit there and not knowing what it is doing does not sit right with me. Others please correct me if I am wrong but we know how CC acts and let a piece of it sit not knowing if it is dead or not and not scanning would make me feel very insecure. Naturopathic treatment is not going to keep it at bay. It may make the patient feel better but CC may resist. I had to say this and give you my honest feeling. I do take correction well so lay it on me! I really hope for the best for you but I worry too.November 21, 2016 at 8:09 pm #12779carla4jeff49Participant
It’s been two years since my husband Jeff was diagnosed with inoperable Intrahepatic CC. We just got his scan results and are so thankful to report they are good.
His tumor still measures about the same as it did six months ago, 3.4 cm (originally at 8cm), and there are no signs of anything new. The doctor said it appears the tumor is dead, but without a biopsy he can’t be certain; but is content to “let the sleeping dog lie.” Jeff continues in surveillance mode for six months, but the doc said they will check his labs first and if they are all fine and he has no symptoms he can skip the scans.
This is what was done for Jeff: He had 3 months of Cisplatin/Gem chemo, which appeared to be ineffective. He then had 3 weeks of Photon radiation at MD Anderson in Houston. The tumor began shrinking after this and has been stable for the past year.
In addition to that treatment, we made his diet more alkaline, and he takes curcummin (turmeric)
milk thistle, graviola (soursop), and cannabis oil called Charlotte’s Web ( THC less than 3% so no side effects) everyday. He feels better than he did before his diagnosis and attributes it to the dietary changes. Of all the supplements we think Charlotte’s Web is key.
Everyone’s journey is unique and what works for us may not work for someone else, but I wanted to share since our results have been good.
Anyone who reads this looking for answers I hope you find them, along with peace and comfort. The first few weeks were the hardest. We had never heard of CC and were stunned and afraid. Once we got referred to MD Anderson, got a treatment plan, and decided to turn it over to God, it became easier. We do not know what lies ahead, so we strive to enjoy each day and give thanks.
Wishing everyone peace and rest.
- You must be logged in to reply to this topic.