wallsm1
Forum Replies Created
-
Posts
-
Shari,
Thanks so much for updating us. I often think of you and have wondered how you have been doing. Sorry to hear you are having a harder time with this chemo. I am not very familiar with that chemo combo. But I’m sure others will chime in. Keep us posted.
Take care,
Susie
I think you are the first member, at least that I can remember, who has received intra-abdominal chemo. I know it is used for other GI cancers, like colon.
Welcome to the site!
Susie
Some pain medication, such as morphine, can cause urinary retention. Maybe she needs a different med.
I used to make ginger tea and take it with me to chemo.
I did not have many side effects with gem/cis except it lowering my WBC and H/H.Take care
I am curious about the 10 weeks of insulin potentiated therapy with high dose vitamins, was that done at UCSD or by a Dr of natural medicine?
I have read other’s posts saying that biopsies can spread the cancer, but that is just what I’ve read.
Sorry to hear what your mom has been going through.
take care,
Susie
Lisa,
I had to ask Dr Vaccaro what my prognosis was. She didn’t just come right out and say it.
And a port placement is very, very standard. I had one. It is much more convenient than getting IV’s and blood draws every week.
Did she mention me or Lisa?
When I first met her, I asked if she had other CC patients and how they were doing. She of course couldn’t go into much details d/t patient privacy but I got some info.
Then I ran into her other CC patient in the infusion room and got her full story.
Take care,Susie
Hi. Welcome to the site and sorry you had to find us. We are about the same age. I was diagnosed at 31 with intrahepatic CC. I was fortunate to be able to have a resection. I am 33 now.
You will get a lot of support from this board. Please keep us updated on your treatment.
Take care!
Susie
I like Dr Vaccaro. My complaints about OHSU are it’s hard to get appointments and there doesn’t seem to be a ton of communication between specialists. This unfortunately seems to be common, though.
I would recommend another opinion. This cancer is just too rare not to seek another opinion.
I got 3 regarding my post resection aka adjuvant therapy, UPMC, Mayo and OHSU.
You have a right to be frustrated.
Has anyone mentioned liver transplant? It is not commonly done for IH CC, but it seems to be happening more frequently.So, long story.
I went to the ER with abdominal pain and a 5cm liver tumor was found.
Ct scan and MRI were inconclusive, biopsy recommended.
At this point I called University of Pittsburgh Medical Center, because ironically, I used to work there as a nurse with liver tumor/liver transplant patients.
I got scheduled for surgery at UPMC. They didn’t think it was cancer at the time, but I was told it should be removed either way.
Meanwhile, I was also sending my records to OHSU, because I live here now. So, I got my resection in Pittsburgh, they knew it was cancer as soon as I was opened. I recovered there for 6wks and then headed back to Oregon where I met Dr Vaccaro, my oncolosist, for the first time. I had 3 cycles of Gem/Cis. Then 6wks of chemo radiation, Martin Fuss was my radiation oncologist at OHSU, he has since left. Then 3 more cycles of Gem/Cis. I have been done with treatment for about 1 1/2 yrs and get periodic ct scans to monitor for recurrence.Porter,
Hi, my name is Susie. I am 33. I was diagnosed a little over 2 yrs ago with intrahepatic CC. I had a resection. I get treated at OHSU also. I live in Hillsboro.
I don’t have kids. I was trying to get pregnant when I got diagnosed.
Let me know if you want to talk or get together.
Don’t private message me on this forum, for some reason, I don’t appear to get all the messages. Take care and just let me know if you want any more details on my story.Take care,
Susie
