July 29, 2017 at 7:34 pm #93278
Thank you, Nykason.
I am thankful to hear you are doing well with your treatments and dietary changes. I hope your tumors continue to shrink. May the Lord continue to bless you on this journey.
CarlaJune 9, 2017 at 1:16 am #93277nykasonParticipant
That’s great news,Carla. I was diagnosed with inoperable IHCC this past August. I have also changed my diet for the better and I feel really well majority of the time. I also exercise more. All of my scans have shown that the tumors have been shrinking. I’ve been on gem/cis since I started chemo in Sept. I also pray multiple tones a day. I’ll pray that your husband continues to do well.May 25, 2017 at 5:06 pm #93276positivityParticipant
Thank you Carla!May 25, 2017 at 5:56 am #93275debnorcalModerator
That is fantastic news. I’m so very happy for your family!
DebbieMay 25, 2017 at 12:56 am #93274
Thank you, positivity,
I agree it is not easy to make drastic dietary changes. It’s expensive and takes time to prepare home made meals. We started small with just a few things and went from there as it seemed to be helpful. We have three teens, and they are slowly getting on board, too.
Best wishes for your mother as you go forward with this journey!
CarlaMay 23, 2017 at 5:11 pm #93273positivityParticipant
Thanks so much for sharing! I love success stories, and every month living with CC is a success. I helped my mom change her diet which I found incredibly important whether getting treatment or not. It was not an easy process to make lifestyle changes, and it’s something we work with on a weekly basis. This is the new life as I look at it.
Continued Success!May 23, 2017 at 2:22 pm #93272
My husband Jeff is 2 1/2 years out since his diagnosis of non-resectable ICC. He had chemo locally , then radiation at MDA in Houston.
His recent scans show his tumor still appears necrotic and nothing new shows up. He still has no symptoms and appears healthy and functions normally. We are so thankful for this and each and every day we are given.
I realize this is not the case for so many others, and for that I grieve, and pray that advances will continue be made for this and all cancers.
I don’t know if this is helpful, but I do believe the dietary changes we made after his treatments were completed have helped tremendously. He feels better now than before he had cancer, and while it is not a cure, perhaps it helps his body keep things stable and in check. We do our best to eat foods that are organic and minimally processed. He also takes hemp oil and Curcummin for inflammation. He keeps busy, but always aims to get enough sleep. Most importantly, we strive to trust God in this journey.
Wishing you all the best,
CarlaFebruary 2, 2017 at 8:59 pm #93271
Sorry so long in posting reply, I’m just seeing this.
Let me clarify. I used the term CBD oil, thinking it is the same as hemp oil. I recently realized they are different. Jeff takes hemp oil. Hemp oil, as far as we know, is legal in all states.
It has no thc so there are no side effects. We order ours from CW Botanicals, because a friend of mine is the step-sister of the owners of the company and I trust it’s a high quality product.
Jeff began dietary changes and supplements after completing chemo and radiation, because we weren’t sure how the two would mix. We have no proof it is a cure, but he feels good and has no symptoms, so we will continue what we are doing as long as it seems to be helpful.
CarlaNovember 30, 2016 at 4:11 pm #93261lainyMember
Dear Ben, you made me so happy today when you wrote the word “stable”, love that word. I am hoping more and more members here continue to have good words to write. I so agree with you about the magic bullets. Wishing you and your wife an excellent Holiday Season.November 30, 2016 at 4:03 pm #93260grsharpMember
Carla, my wife was diagnosed one year ago and was first treated with gem/cis. She then had radiation with 5FU and is currently taking Keytruda now for past 3 months. Her hilar tumor (tumor in/on right and left liver duct at junction with main liver duct) is stable and she feels well.
Since there is no know cure nor no know cause, she too is taking many of the same products your husband is using, including high Ph water. Since medical cannabis is illegal in Tn I’m not sure how to get access to it.
Since medial science has yet to identify the correct bullet to shoot at CC, I just wanted to second the idea of shooting all the bullets in the magazine in hopes that one or some combination will be effective.
We are grateful to see another Christmas.
BenNovember 23, 2016 at 1:52 pm #93262
Thank you! The situations do sound very similar. Your mother’s results are very encouraging. I hope all continues to go well with the scans in January.
Enjoy your holidays,
CarlaNovember 23, 2016 at 1:46 am #93263middlesister1Moderator
I am so happy to hear your report. I think we’re in the same place. My mother also has some dead/necrotic tumor, but the ONC no longer reports the size (it was originally 4×6 cm) since CT and PET show no viable tumor. After the first Y-90 treatment, it did shrink, but the CT and PET still showed viable tumor. We then went for a second Y-90 and although there is still a mass, it appears dead- the CT shows no uptake at PET showed no evidence of disease. It has been 2 years since last treatment. My understanding is that it will take a long time for the dead tumor to dissolve in the body. If it comes back (I used to say when- but now have hope it may not), we will look for a second opinion since there have been many advances However, as our ONC and IR tells us, there is nothing to treat at this time, and nothing to biopsy for genetic testing, so we are not going for second opinion until there would be something for them to evaluate.
We’re at 6 month scans now, with next coming up in Jan.
CatherineNovember 22, 2016 at 3:38 pm #93264
Same to you and everyone else!November 22, 2016 at 3:35 pm #93265lainyMember
Thanks, again, Carla for clarifying and you and Jeff have a wonderful and delicious Thanksgiving. SO much to be thankful for!November 22, 2016 at 3:26 pm #93267
We did not ask for a 2nd opinion. Initially, when Jeff was diagnosed locally they did try to find a surgeon willing to operate, but were not able. They do not treat hardly any cases of CC , but have some type of affiliation with MD Anderson so they referred us to them. Our doctor at MDA hoped Jeff would be considered for a liver transplant ( and tried a second time to get him accepted after the first rejection) but he was not. They did genetic testing in hopes for a trial but again nothing was a match.
He then had Chemo in hopes that the tumor might shrink enough that surgery could be done, but the tumor did not change. We then were sent to the radiology dept for radiation. From what we understood, once the tumor was exposed to the radiation it would change it so that surgery for that particular mass would never be an option, and have not heard anything different so far.
The radiation was very effective and the tumor is less than half what it was, and appears to be necrotic 18 months out. At this point we do not feel the need to ask for a second opinion, but do appreciate that option.
Jeff’s chemo was done locally as prescribed by MDA; his radiation was done on site in Houston. His follow-up scans are now being done locally with results sent to MDA. If we went to MDA for scans they would be done every 3 months until the one year mark of his radiation completion, then I think it was 4 months, then 6 months. Because we did them locally he chose to schedule them for 6 months this past year, and then not sure for his next 6 month check-up. It may shed some light to mention that Jeff has worked in health care for 25 years, works at the local hospital where he received his chemo, and therefore knows the physicians and nurses doing his follow up care.
I appreciate your questions and follow-up to make sure we understand what our options are and that we are informed. Choosing to lengthen time between scans does not follow protocol, but Jeff is comfortable with it at this point, although nothing is set in stone.
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