May 24, 2019 at 8:02 am #98667
Hi all, I am back, with not so good news.
Following scans of my husband showed he has metastasis. He has now 2 small nodules in his lung (one is less than 2 cm, the other is less than 1cm, close to each other), lots of enlarged lymphnodes, apparently he has a small metastasis on his pelvis on right side. Those metastasis were a surprise to us, since he has no symptoms related with the organ or that area.
But he is having a lot of pain on the hip (opposite side where the metastasis is), and that pain is increasing its levels considerably. Now the cause of that pain me and my husband understood different things: one understood it is a very enlarged lymphnode that has signs of cancer and it is near the backbone, and it is pressuring a nerve. The other understood that the backbone has signs of cancer, the nearest lymphnode is enlarged because of that and it is pressuring the nerve. Some days are slightly “less worse” than others in terms of pain, and that is not helping him to sleep at all.
Whoever understood it correctly, that wouldn’t change the treatment I guess. So, next week he will go through radiotherapy for the bones, and on following week he will go through chemo again. I really hope that the radiotherapy can help him be more mobile. It is heartbreaking seeing him in a lot of pain.
In other hand, apart from the small tumours in his lung and the condition of his bones and enlarged lymphnodes, all the rest of the organ and the other lung look good, his liver is fine, and no abnormalities in other organs were detected. So I am praying that this time the treatment will work and get rid of all cancer…
So… again, I am avoiding on reading stories of other people about this cancer because I know most of them are sad, I believe we were lucky enough last year being able to get the primary tumour removed, and I also know that each body is different and can react differently. Since the beggining the case of my husband seemed a bit atypical for what I read, and apart from the pain, when he is pain free and relaxed, looking at him you really can’t tell he has such a serious disease. He looks healthy, has no anemia, no weight loss and no loss of apetite as well (he actually gained some weight). So I am just focusing on his case now, since each of us are unique.
If you are reading this and you are new to the forum, I can tell you one thing: Don’t trust on the levels of Ca 19-9. If they are below the limit, it doesn’t mean you are cancer free!March 2, 2019 at 8:15 am #98246bglassModerator
Thank you for your update. It is great to hear how well your husband is doing, and how positively his doctors are viewing his progress. Your husband must be feeling relieved.
In no way am I meaning to dampen this welcome good news, but I do want to comment on surveillance after treatment. It is important to keep a sharp eye out for any signs of recurrence. This includes having periodic chest-abdomen-pelvis scans (typically, from what patients report on this board, four per year during the first two years) and bloodwork, as well as alerting his doctors if anything seems amiss.
I hope you will stay in touch. It is always nice to hear good news stories.
Regards, MaryFebruary 28, 2019 at 6:14 pm #98233herculesModerator
Hello Jules, mine is not a sad story, I have remained cancer free for 13 years with no recurrence , it is possible. Every case is different so keep the faith and keep doing what you are doing. Congratulations on your recent news and scan ! Remain positive and it is awesome that his cancer markers are trending down , do things he loves and laughter is great medicine so try to have some fun as often as possible, eat healthy and keep his weight up, he can win against this cancerFebruary 28, 2019 at 3:21 am #98230
Hi all, came here to add a new chapter of our story. I confess I still don’t want to check the rest of the forum because I don’t want to read sad stories, but I want to bring some light to people who, just like us, is still fighting against cholangiocarcinoma.
Well, my husband is great! After my last post, the results of the tomography were clear. Nothing that the oncologist said we should worry about at that moment and that 38.5 Ca 19-9 wasn’t really something to worry about (just like Mary said above, he would worry if it had doubled or something). At the end of November he siad: “If cancer wasn’t a disease with chance to come back, I woudl say you are cured.”
Since then we didn’t have a new scan yet, but last month he had his blood collected for Ca 19-9 and it was the lowest that it ever had been since we found out the disease. It is 26! Yay!
His chemo ended at the end of October, and since then he didn’t have any medication at all. So I guess it is good news!November 7, 2018 at 9:45 am #97739bglassModerator
Welcome to our community and thank you for sharing your husband’s story.
What is striking to me is how frequently cholangiocarcinoma is symptomless and discovered accidentally when doctors investigate other complaints. Your husband is beyond lucky that his cancer was found in time to have surgery. The capecitabine (xeloda) he has taken after surgery was found in a British study called BILCAP to have positive results in prolonging survival for patients post resection.
It is essential to have close surveillance after surgery because this cancer can recur, and can do so without symptoms just like the original cancer. Doctors have different approaches to follow-up but they should take patient views into account. After my surgery, I had scans every three months for two years, plus monthly CA19-9 tests and quarterly metabolic panels and CBCs. If you have the CA19-9 monthly, it is easier to see if a movement is a blip or a trend. In my own case, I had both chemo and radiation after surgery. My CA19-9 drifted slowly upward during treatment, then drifted downward after. I am now -gratefully- three years past surgery. I still have my CA19-9 checked every two months plus now two scans each year, because with this cancer, there is always risk it will come back.
My doctors did not seem to worry about small movements in the CA19-9. One said he only worried when there was a “doubling or tripling.” Hopefully, in your husband’s case this is just a blip. Fingers crossed.
Please check out all the resources for patients and caregivers on the Cholangiocarcinoma Foundation website, and keep us posted on your husband’s progress.
Regards, MaryNovember 7, 2018 at 5:16 am #97738
Hi everyone, call me Jules. I am new to this forum.
In March this year my husband started to feel sick. We thought it was his diverticulitis again but ended up that the ultrasound found nothing in the intestines and found a tennis ball sized tumour on the left lobe of his liver. Back then all his blood tests were normal (or relatively normal), except by the levels of ferritine (it was above 3500) and Ca 19-9 (592). Liver enzymes were just a little bit above the normal level, what surprised the doctor. No hepatitis of any kind, no cirrhosis, no auto imune disease, no hemochromatosis. My husband doesn’t drink or smoke.
As the tumour was too big even if it was benign and as my husband was in a relatively good condition, the doctor decided to do the resection of the left lobe of his liver + gallbladder + 1 local lymphnode and do the biopsy of the tumour after the operation. The operation happened in the second half of April and the biopsy confirmed it was malignant and the lymph node had metastasis (pT2pN1).
He went through 8 cycles of chemotherapy (Xeloda), that ended last week. His Ca 19-9 levels were 52 in May and 31 in June. Today he went through tomography scan (we don’t know the results yet) and the blood tests from yesterday were all normal, except by Ca 19-9 (it should be lower than 37 and his level was 38.5).
Apart from the cancer, he has benign cysts on liver.
Now I don’t really know what to think about it. My husband has a good appearance at the moment. Xeloda doesn’t cause hair loss, so looking at him he really doesn’t look like he is fighting against a cancer, he isn’t pale or have jaundice at all, he even gained weight during his treatment. He is still having some side effects of the chemo. But I was expecting the Ca 19-9 would be a lot lower… especially because in June (2 months after the resection) it was lower than now. I know that 31 to 38.5 is not a big difference and it is only 1.5 above the limit but still… I read somewhere that benign liver cysts can raise the levels of Ca 19-9, so I really hope that’s the reason why it is not lower. But he said he now is feeling like the same he was in March…
Anyone has /had a similar story and had a happy end? I love my husband like crazy, we are married for only 2.5years and we have a 1.5 years baby. I try to stay positive as much as I can, but it breaks my heart seeing him down sometimes or seeing our baby wanting to be more with his dad and can’t because my husband is feeling unwell…
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