iowagirl

Wow Judy, You’ve had a long haul starting with the Hepatitis C and then actually moving on to both liver cancer and bile duct cancer. The trifecta!!!…and not in a good way, huh?

As you probably already know, you’re in a good place at Mayo to be considered for liver transplant. There are several other places in the country who also do it and have excellent results.

I am a little confused…you said you had a resection in 2007 with no cancer?…..but the two tumors began in Nov of 2013. If there were no tumors in 2007, why did they do a resection? Did that have something to do with the Hep C.?

What have you been having for treatment other than the TACE?…..chemo at all? Do you know the type of your bile duct cancer?…..extrahepatic aka distal?

BTW…the weekends are usually pretty quiet on the discussion boards, …people usually post more and reply more during the week. )) So, please do check back for responses to your posts.

Julie T.

Marilyn,

Thank you, thank you for the great explantion…..simplistic or not…..that’s what I needed. I didn’t realize some of the “studies” I’d seen were just academic studies…but that explains everything. Now to be patient. But, I’m an impatient, patient. It’s kind of “after the fact” for me, having already done the adjuvant chemo, but I’d still like to know. ))))

Julie T.

Marilyn, Thanks for going over the study info. I didn’t know if it was like a trial for a drug…..once they discover a drug has fantastic response, (don’t know how often this actually happens) the drug is offered to all parties involved (and similarly, when a drug isn’t working as expected…or even having opposite results (as I believe some drugs in heart studies….and estrogen?….is that the one??)…..they pull the drug before the projected end). I thought maybe that if the saw a pretty dramatic result, it seems ethically, they should need to inform the public and medical community. When I saw 8 years on there…..I was pretty discouraged. That is 8 more years of people not knowing based on any research whether to do adjuvant chemo or not.

That said….I “thought” there HAD been some studies….showing that adjuvant chemo does have some good effect….in particular where there are positive margins and positve lymph nodes, but not where everything “looks” good. Am I imagining that? I thought for sure I had read that in some of the study posts that you or Gavin had posted on the foundation website. If that was the case….why is Germany doing this big study? Is it just for the much larger size of the study…and thus a better chance of being statistically more accurate?

Julie T.

Matt,

1. I was also foggy and sleepy for almost every infusion of Gem/Cis….sometimes more than others….but always on day one, when I received both Gem and Cis. That wasn’t the case so much for day 8 of just the Gem. The foggy /sleepiness would start within hours of getting home…and go on for a day and a half to two+ days and then it was back to normal again.

2. I was given the antiemetics via IV before being given the chemo. (They do it in separate bags…not at the same time). I sometimes used Atavan to relieve queasiness, if it occurred in the daytime. When it did occur in the daytime, it was generally about 3-4 days after I got the chemo infusion. I didn’t dry heave daily until after about round 4 or 5. Before that…..I didn’t have even queasiness even the several days after chemo ….until as I said…about 4 days later. Then, the first round, I was queasy for a couple days. Everybody is going to react differently to the chemo agents though.

3. Glad to hear that your first infusion was uneventful. I think you’ll find that the Gem alone infusion is easier on you.

4. I’m so sorry to hear that you had such an ordeal getting the port implanted. It sounds somewhat similar to mine, though even much worse when it was put in. I was awake during it all (were you?) so I was totally aware that the surgeon was having trouble getting the port to lay right in my chest.

5. I didn’t hear any complaining in what you wrote. Your remarks and questions are valid and reasonable.

Moose…..I discovered that I became less and less tolerant of pain as I went along with treatment, I let the people doing the procedures know if it was really hurting me. Before, I had a very high tolerance for pain.. But, I think that this is something that just keeps assualting us…over and over….until it wears down our resistance. I’m sure that you (and I) could handle some pretty high pain once in a while (note, that you already exhibited that before you were diagnosed), but it’s a far different thing when it becomes chronic. And yes, it didn’t take long to realize that 1. my caregiver was already dealing with plenty and didn’t need to hear about the pain I had 2. friends and family often just don’t want to hear the truth either….and from them, you hear, “You’re so strong…..you can do it.” Uh nope….not THAT strong….not without some complaining…at least a whimper. Brave has nothing to do with this……there are things that are done to us that HURT….either physically or emotionally. It’s okay to tell us what’s “hurting” you…..and truthfully, we’re all scared here now and then…and we “get it” .

Fantastic news about the insurance clause with your job and getting a percentage of your pay. That will allow you to take it a little easier and not try to push it if you don’t feel like it some days. So happy that happened for you.

Julie T.

Mizzey,

I had intrahepatic CC and had a resection a year ago. The staging numbers you mentioned
T2b NO L1 V1 R2
are how they identify the cancer….how far it has developed.

T2b in intrahepatic CC refers to the tumor stage. It can either mean two or more tumors, or one tumor that has invaded further.

NO means no lymph nodes were found to be malignant
V1 means that there was some microscopic venous invasion
L1 means that there was some lymphatic vessel invasion
R2 means that there was macroscopic residual tumor (this was as much as I could understand about this using other cancer staging, as I couldn’t find it in the staging of CC . Anyone else comment on this?)

Yes, I gained 25-30 pounds while doing chemo (using steroids in the IV). I wish I had not listened to those who kept pushing food at me…..telling me I had to eat more to keep up my strength. It seems to be just assumed that you will lose weight on chemo and that just isn’t always the case. Since it doesn’t take much for me to put on weight…..eating that extra put on the pounds and now I’m working to try to get them back off……but it isn’t so easy as you all know.

Others will probably chime in about continuing Gem/Cis, but I know that many conitnue it as long as it is effective and the side effects (such as blood counts, etc) aren’t too bad.

Best wishes,
Julie T.

Serena, one more thing……don’t feel bad about not asking the questions when you are there at chemo. There’s a LOT of stuff to “take in” and I don’t think they expect you to remember it all the first time….or for some time after that for that matter. And….I think our senses are working overtime, just trying to “get through” the whole experience. As I said before….don’t hesitate to call the oncology office to ask your questions inbetween time. They’d rather you had the answers than sit and worry about it. You aren’t bothering them.

Serena, All of my drugs, Emend, the dextramethasons, , etc, etc, were in IVs that I received on the day of chemo. I did not take anything else except for the occasional Atavan. Not sure about the cisplaatin dose…..I never inquired as to how much I was getting. The amount was pre-determined based on my weight each day of chemo.