March 24, 2017 at 4:42 pm #93697positivityParticipant
I’m glad to hear that you are making changes to her nutrition and complementary care. Beta glucans are supposed to shrink tumors and prevent spreading. I don’t know the exact dosage or effect, but if the body doesn’t react in a negative way it’s worth a try. I have my mom take one a day, afraid to increase the dosage, and it’s good for now. Vitamin C is perfect to keep her immunity up, this is crucial to whether you are undergoing chemo or not. Keep going!!!March 24, 2017 at 6:07 am #93696
joviony…..crossing my fingers that the gem/cis is doing what’s needed. Your wife is strong and young and I have my highest hopes for shrinkage.
Lemon is good, many people such on lemon drops throughout the day and therefore have less problems with the metallic test caused by chemo.
Good luck and please keep us posted,
MarionMarch 24, 2017 at 1:08 am #93695
The transvaginal ultrasound came clean, so I guess its pretty sure were dealing with intrahepatic cc.
she started round 4 last monday, so the plan is at least two more rounds of gen/cis until the next scans and to determine next course of action. She’s eating lots of fruits, vegetables, soups, tea, lots of vitamin c, milk thistle, beta glucans, elderberry, soursop, and she;s hooked with Lemonheads, helps with the metallic taste in her mouth caused by GenzarMarch 17, 2017 at 3:54 pm #93694positivityParticipant
Keep providing emotional support and ask questions if you are uncertain about anything. It’s important to work well with your medical team. The good news is that it’s stable, but ask how long do you have to use the gem/cis treatment before determining it is not effective. You already said it is not decreasing the tumor size. Keep us posted on other treatments.
Has she made changes to lifestyle? Examples being in nutrition, exercise, supplements, activities, etc…March 17, 2017 at 1:54 am #93693
the oncologist said that if gem/cis doesnt work then we change treatment. which one we havent had that discussion yet.March 16, 2017 at 5:03 am #93692
joviony….good news re: stable disease. Do you know the next step of action if and when she becomes resistant to current chemo?
MarionMarch 15, 2017 at 11:58 pm #93691
After three rounds of chemo, (Gemzar/Cisplatin) ct showed that the tumors did not shrink, but neither did they grow, they remained stable. Not the news I wanted to hear but definitely stable is better than progression. But the radiologist that saw the CT told us that the tumors dont look as typical cholangiocarcinoma tumors.
The patology report said that the two most possible primary sites are pancreobilliary or to a less extent, mullerian system. The PET scan showed no activity “glow” in that area but we wanted to be 100% free of doubt so the onc ordered a transvaginal ultrasound. In the meantime, at least three more round of chemo till the next scans. Typical side effects (nausea, specially with the cisplatin, hair loss, some weakness) but generally she;s feeling well. The liver enzymes are in normal range except the ALP that is high but the onc says that its caused by the chemo.December 20, 2016 at 2:36 am #93690
joviony…..glad to hear the biopsy is behind you. The testing of her tissue is extremely important and carries over to the treatment options.
MarionDecember 20, 2016 at 1:34 am #93689lainyParticipant
Dear Joviony, this is good news. Very often a surgeon will say that they cannot truly see what is going on ‘inside’ until they see it first hand. My husband had a Whipple Surgery and they cut the head of the Pancreas to make sure nothing had penetrated, so this is good news for your wife. I know it all seems so slow to get to where one needs to be but it is a situation where things need to be ruled out and the more the better. Looking for more good news to read about your dear wife.December 20, 2016 at 1:25 am #93688
Thanks for the kind words I appreciate it.
They did a biopsy, something about inmunohistochemical stains, and a Inmunophenotype profile to look for a exact site of origin, that says most likely pancreobiliary system. But the CT scan showed no masses in the pancreas.December 19, 2016 at 4:00 am #93687lainyParticipant
Dear Joviony, welcome to our remarkable family and the best place to be for CC support! I am so sorry to hear about your wife but it sounds like she is in good care and on the right track. Now the boxing gloves come out and also let the positive attitudes prevail as they are so important in this fight. Please keep us updated on your wife’s progress as we truly care!December 18, 2016 at 12:04 pm #93686middlesister1Moderator
It’s so sad to hear of another young mother diagnosed with CC. However, I’m glad that your wife took the initiative and got started on a treatment plan rather than wait.
I wish for the chemo to have great success and that she tolerates it well.
Let us know how she does and keep in touch,
CatherineDecember 18, 2016 at 5:44 am #93685
joviony…..welcome to our site and thank you for sharing your story. I strongly believe that nothing beats the surgeon’s eyes. At one point we can expect radiology to get close to what the surgeon sees, but for the time being you have had the best evaluation possible.
I assume a biopsy was performed. Do you know whether it was tested for molecular alterations?
Its ‘s wonderful to hear that you have a strong support system, have a positive attitude and ready to take on this cancer.
Know that we are with you, all the way.
Tons of good wishes and please stay with us,
MarionDecember 17, 2016 at 6:26 pm #12843
Hi there, just wanted to share our story. Last October my wife went to our primary physician with pain in her right side, and a little fever, the Dr suspected gallblader issue but ordered a sonogram. The next day the pain subsided but the sonogram showed a couple of masses in the liver, so he ordered a CT to check it out. The CT showed a 6cm mass with multiple smaller ones and suspected metastatic decease, and a biopsy is recomended. We got worried, and the earliest appointment with the radiologist was a month away, so my wife took the liberty to text a very renowned liver specialist, the only one who does liver transplants in the islands. Gratefully he texted back, and told her to visit his office the next week, so we did, and after looking the scans he recomended a laparascopic surgery just to make sure what we’re dealing with, and to take it out if necessary. On Oct 28 he did the procedure, but later came the bad news: it was cancer, and cannot be operated. Our world fell apart, had a million thougts in our head. Soon Nov 18, we met the oncologist who ordered a Pet scan, just to see if there’s cancer anywhere else. Thankfully the other organs are clean and told us it was intrahepatic CC. She will start Gem/Cys next week. She’s 39, mother of two young children, and were positive, have a lot of people rooting for her, and ready to fight. Now she has a mild disconfort in her right side but nothing else. (no jaundice, no itching, all bloodwork came normal, including the tumor markers)
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