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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
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Hi, It's been a while since my last post.
Since last August I started gem/cis. I had few side effects and I thought it's working well, but my ca19-9 was not going down but up(doubled). CT showed no changes so onc decieded to keep going with same chemo. Mean time I was having lots pain on my right side that they couldn't figure out why I'm having so much pain. They gave me more pain med and watching. Checked tumor marker again a month later. Well it's up again. So I decided to get second opinion with Dr. Fung from Cleveland clinic. They want to do a biopsy on my abdominal area shows some activities on pet/ct. and possible radiation treatment if I'm understanding right. So I cancel chemo for this Friday since I'm schedule for biopsy Monday and email to my local onc with my plan.
I got a call from my local onc with lastest update on ct I took last sunday. Yea I was at er due to major pain on my lower abdonimal, but they couldn't help me much. They say cancer is causing it.
Anyway, my onc said my cancer is spreading to new areas abdonimal wall and rectum areas and not recomm. biopsy or local area treatments. He thinks new chemo would be my only choice. So he is trying to talk me out of going to cleveland clinic. I'm not sure what to do now. I email to Dr.Fung and waiting for his response since he didn't get to see the new ct yet, but my onc email him with new findings. I am so lost, sad and upset! I'm going to pain clinic tomorrow to get a nerve block for my pain. I hope it does.
I don't know what to do!!!! Help All I want to do is cry. With holiday coming up I can't enjoy with my kids I feel so bad for them too. I'm so tired of ups and downs.
Tiffany, you are a one tough cookie!!!
Happy Thanksgiving, you deserved it
What a great news!!! I'm so happy for you Kris :-)
I was going to be on the FOLFIRNOX clinical trials at U of C but after genetic testing that I would not be able to tolerate it, so I'm on gem/cis.
Few weeks ago I was there for my chemo, I met a lady(also cc pt) who was on that clinical tirals FOLFIRINOX for 6 months had a great responds and she doesn't even take pain meds anymore. But because it's so hard on your body and I think the duration of trial is only for 6 months, so she's on gem/cis now.
Hope your husband gets great results with little side effects.
Thanks for sharing Percy.
If it's not approved by FDA for cancer treatment, I wonder if insurance is going to cover it....
Thank you Lisa.
I'll give you a call. Hope you are doing well.
Thank you Lainy, Mark and Pam.
I went to my old hospital(UIC) where I had resection to pick last pet/ct copy for 2nd opinion. While I was there I called my surgeon and told them what was going on. I had no appt but wanted to see me right then. Good thing I had my last ct-(since started chemo) with me thinking that I might get to see him. They all looked at my ct and said he doesn't see lymph nodes involvement??? but its around portal vein so it's very difficult to do surgery. He is going to send my ct to his colleague in different state does nanoknife. SO I hope to hear some good news soon.
Just wondering if anyone had a surgery with recurrence involve with lymph nodes?
I had resection a year ago but sadly it came back around resected liver with few lymph nodes involved. My onc said surgery is not an option but I'm wondering if other surgeons feels the same. I'm thinking about getting a second opinion. Any thoughts?
Thanks for sharing great news with us Susie. I'm so happy for you:)
I'm on gem/cis like your husband.
This is what my experince with chemo.
I get steroid with chemo on friday. Usually I get body ache that evening.
Con't taking steroid (pills) sat and sunday so those 2 days I feel great, but monday and tuesday come I have no energy so I do sleep or lay around a lot. By wed. I feel better and thursday back to almost normal again. That's what I've been experincing for last 3 cycles. As far as eating goes, I have no problems and sometimes I wake up middle of night hungry so I have mid night snack so I could go back to sleep(I can't sleep when I'm hungry).
I hope that gives you some idea.
Wish your husband best of luck with chemo
Welcome to amazing support group. I was diagonosed about 1 year ago. I had resection with neg. margins with no node involved so they decided to do nothing at that point. But sadly it came back about 3 month ago with a new tumor where they resected and few nodes involved. My only option is chemo for now. I've been on gem/cis and it helped a little. Thankfully I had a very little side effects with chemo. I try to get blood work every month and scan every 3 months. Sometimes, I ask for sooner if I don't feel right. Like last scan was a after 3 cycles of chemo even they wanted to wait. I'm not a kind of patient wait for them to tell me what to do. I do my homework and ask lots of questions and demand things if I don't feel right.
I read lots of post on this site and learned so much from their experiences helps me ask the right questions when I see my onc and knowing that I get so much support from everyone here.
Stay positive and let us know how we can help.
Got some good news!!! I went in yesterday to get a new CT and to see my onc. From last week's blood work- tumor marker being double since I started chemo- I expected the worse news like new tumors and got bigger etc.
Nope, actually it showed shrinkage on main tumor and stable. No new lesions!!! How about that!!! I was so happy to hear that. So they gonna keep me on gem/cis for now.
I just want to say "Thank you" to all for your support and encouragement. I don't know what I would do without you guys.:-)
Thanks to all.
I know what you are all saying but I couldn't help being disaaponited. My Ca19-9 was on up trend since after surgery. My lowest was 79 a month after surgery and was going up since then. Since this was my first chemo, I had a such high hope for the number to go down or any improvement and didn't happened. I know this isn't the end of the world, but.......I'm sure you all understand. Thank you all again for your support and I will try to stay positive.
I just finished 3 rounds of gem/cis. Since I haven't had tumor marker checked since I started chemo, I asked for one today to see if there's any changes.
Well, almost at the end of chemo they had blood test result. Bad news!!!
I don't think chemo did anything for me. My CA 19-9 was 340 when I started chemo, today it was 790. I'm so upset and sad. I'm getting CT next Friday and discuss what to do next. I knew something was up. I had hardly any side effects at all. It was way too good to be true. At this point I don't want standard treatment, any suggestion?
wow! popsicle was and is my fav evening snack, especially when I have dry mouth.
I'm on gem/cis also. The first day(fri) after chemo I have major body ache all night but feels much better the next day. I take Dexamethasone for 2 days after chemo and that gives me more energy I think. The 4th day I have no energy but bounce back on 5th and 6th day. I hope that gives you some idea.
wishing your husband minimum side effects with chemo and good results.
So sorry for your loss. Praying for you and your family.
I just finished 2 rounds of gem/cis with very mild side effects.
I get achy body on the night of chemo but nothing else so far. I, too worry about hair loss but it hasn't effected me yet. I'm on 2wks on 1 wk off schdule.
I have no problem with eating and maintaing my weight. My nurse told me that nausea seems to be the most common problem. Hope she tolerates well.
hope surgery went well. can't wait to hear good news and wishing you a speedy recovery
they said to check in 3 months if I'm doing well with this, but I'm going to ask to get ct in 2 months. If it's not doing anything in 2 months what's the point keeping it going. I'm in charge of my treatment now. No more wait and see.
I had to go in 2 hours before my chemo appt for lab work.
Once I'm in 1 hour of saline, 1 hour of gem,1 hour of cis, last 1hour of saline again. What a long day!! So I asked to get my blood work done 1 day early from hospital close to my home and have them fax the result to my onc.
They prefer to have it done at same hospital where I'm getting chemo, but it's just too much waiting around and I don't have much patience for that. I have much better things to do then sit and wait,
like doing load of laundry:-)
@Eli thanks for info on bed. I did asked for it on my first chemo. It was sweet. I slept like a baby whole day, but second chemo bed wasn't avail so I was stuck with recliner. :-( so noisy too much going on!!!
chemo #2. So far so good
For pain on my side they gave me hydromorphone but didn't work that well, so they chagned to morphine sulfa. I hope this would let me get some sleep.
I'm getting more hot flashes!!
My menopause journey started 2 years ago(44) had mild symptom but since I started chemo I'm getting more hot flashes yuk....Doc said its chemo
I'm so happy to hear that your moms chemo is working. Stay positive and looking forward to meet your mom one day. I need chemo buddy:-)
You are in my thoughts and prayers...
Posts found: 1 to 25 of 93