iowagirl

Welcome and congratulations on being able to have surgery to remove your CC cancer. I had surgery for intrahepatic CC and then 6 rounds of gem/cis. It isn’t an “easy” thing to do, but nothing about this is easy, is it? I too, am interested in whether you had any lymph node involvement or clean margins. Even though we have different types of CC, we still are very interested. Again…welcome and hope to hear from you again soon.

Julie T.

Pat…you are absolutely right about the port and cleanliness when accessing the port. Before I left Mayo at my checkup, I talked with them about getting the port inserted. The RN on my team made sure….several times….that I knew that WHOEVER accesses the port….should use the cleansing antiseptic for at least a minute solid over the area. When I went to get the first chemo, I had to convince them to do it longer….as the chemo nurse was only going to do it for about 30 seconds. Then, I went into the hospital immediately after the first infusion….for blood clots, and they wanted to use the chemo port because of problems with my arm vein access, and again, I had to convince the nurse to do longer than 30 second. In fact, she had only done 17 seconds (yes, I timed her) when she said she was done…she was so SURE she’d done at least a minute. I told her that I’d let her know when the minute was up. GAH! My chemo nurses at the 2nd cancer center (I left the first one) , always did it at least a minute or more. It DOES make a difference.

I’d do the chemo again for the peace of mind.

Porter, Thanks for posting your response. I’m being impatient….I know. Yesterday, I had my first labs in about 30 days and I was disappointed to find that they weren’t where I expected and wanted them to be. Nothing was in a dangerous area, but a couple key tests were still below normal and the kidney function test had even gone further from normal. My oncologist reminded me that I’d gone through 4 month of pretty hard chemo and it is likely to take at “least” that long, if not more, to regain what I lost. So, I need to back pedal my expectations a bit. I had forgotten that you had told me that it was taking you a while also to regain your footings.

The question is…would I do the chemo (Gem/Cis) again, even knowing what I know now about it and the answer is definitely yes. I agree entirely with Porter, in that it has afforded me some peace of mind, knowing that I’ve done what I could, within the bounds of what was offered to me. In the case of my doctors, my Mayo oncologist gently said that if it were his family member, he’d push to do the chemo. My Mayo surgeon, on the other hand, not so gently said, “We don’t do this surgery without you doing the chemo.” In her mind, even with 2.2 cm clean margins, no lymph node involvement, and no vascular involvement and a T-2b staging, there was just too much risk of cancer cells floating in my system…..CC is aggressive and needs to be attacked as aggressively as possible.

I’ve found that a lot of people I know here where I live..my friends and relatives…., don’t seem to understand the cancer cells moving around in your body. They ask , “Well, didn’t they get it all when they did surgery?….why would you do chemo when they got it all? Of course, we know that it isn’t always the case…it can’t be seen during surgery, That’s why breast cancer now has a better cure rate…because they do adjuvant chemo now. Before that, more women had their cancer return. It isn’t 100% though. For us…the CC patients, the studies haven’t been done to indicate whether our adjuvant chemo does any good at all, and it’s an awful choice to make…to subject yourself to the side effects of chemo or wonder if the cancer will return either way you choose. Even in the best case scenario, it, chemo, takes a toll. I have to say though at this point in time, other than the blood counts that I’m impatiently waiting to get better, the majority of the side effects have either gone away, or lessened enough that they just don’t really bother. I am having to deal with the aftermath of a blood clot causing post blood clot syndrome….that is…swelling in the leg, which probably won’t go away. That was probably caused by the surgery to put in the chemo port….and wasn’t recognized by the old oncologist when I saw him about symptoms. (long story….see some of my old posts).

On August 1, I saw my Mayo oncologist and he commented on my excellent performance status on chemo. REALLY? I felt so crappy, that’s the last thing I’d expected to ever hear. But, in the grand scheme of things, I guess I hadn’t had the issues with neuropathy or hearing and the blood labs kept popping back enough to continue the chemo. In the end….I had a sense of relief that the chemo was over and a sense of relief that I was starting to recover and feel better. So, yes, I’d do the chemo again and as crappy as it was, I would go through it again if I had to. There is so little peace of mind with this cancer…..I want to grab whatever I can.

Julie T.

Pat…I am one of “those” who you inspire. I have finished my surgery (Feb 2014) and adjuvant chemo (Aug 2014). Now, life begins again. There will always be CC hanging over our heads, but what I’ve discovered is that there is a whole lot of life to experience and I’m not waiting to see if the CC comes back or not. It’s time to move on….pull myself out of the blue funk and get on with things. Here to hoping that when you’re celebrating your 14th year CC free…..I will be raising my glass to celebrate 5 years of CC free.

Julie T.

Much as we might like to encourage anything that seems to sound “good”, if constipation is an issue, be careful with too much ice cream…or milk products. They can be very constipating. I was lucky not to have any constipation problems during chemo , but I did stay away from milk products most of the tine. I can’t drink milk when I’m healthy….because it causes constipation for me. The couple times I did allow myself ice cream, I could tell the next day in the bathroom that it wasn’t a good thing for me to eat. After that, I pretty much stuck with protein/red meat….and veggies…and occasionally fruit.

I would also suggest trying some frozen applesauce…slightly thawed…or frozen peaches in juice, also slightly thawed. A favorite of mine is frozen fruit covered with a clear pop….(I used diet because I’m diabetic and try to limit the sugar…but if you’re trying to add calories…the regular wouldn’t matter). I often use frozen , red, sweet cherries covered with the pop in a glass…and then I eat it with a spoon. It’s pretty yummy. Anyway, the frozen fruit, slightly defrosted or in pop….could help with being appetizing….and also with constipation issues.

Julie T.

Melinda,

l finished chemo (6 rounds of Gem/Cis) on August 27th, this year. I can say that as of about a week ago, a fog of sorts lifted as did this general feeling of malaise. I still struggle with not being able to use a word I want…..just can’t think of it…though it seems to be there right in my grasp. English was my major, and I always had good command of the English language, but I have no control over this. Sometimes, I find myself forgetting what I was saying…the whole subject, but that may be improving some. Last weekend, I sang the National Anthem at an event (was a last minute thing) and as I should have sung, “And the rockets red glare,” I realized I couldn’t think of that R word….and quickly inserted, “ramparts,” instead. I’m sure many of those there noticed the word switch…and thought I just didn’t know the lyrics….but it was chemo brain. Through the rest of the song, I worried whether I’d forget another word…or a whole phrase, but made it through without another hitch. So, as to how long chemo brain lasts……?????….well, I’ve been told that sometimes it goes away and sometimes it doesn’t. I figure that if it keeps the CC from coming back (not a given either), then I can live just fine with forgetting words now and then. As to the fogginess….that seemed to go away once I started getting far enough away from the last chemo. As of today, I feel downright perky….almost a month out from the last infusion. To me…chemo brain is the forgetting of words….but that fogginess, is different. I related it more to a general feeling of well-being or not. As of last week….I can say that when that feeling of malaise lifted…..so did a lot of my sadness and feelings of depression. It’s not that I’m super happy …..who could be with CC on your medical charts….but I feel relatively normal and not so prone to being depressed and tearful. This is my experience. I’m sure that others have had different ones with this chemo,.

Hi….I don’t have any info to add to this discussion, but have been following your posts. I think the most important thing here…is that your dad “wants” to fight yet. I get that….there’s always that small chance that this procedure might work…and your dad wants to grab onto that and give it all he’s got. It’s a “Hail Mary,” and sometimes those Hail Mary plays work. I know there are some on the boards whose loved ones have said, “Enough,” and chose to live the time left as good as they could, but others have chosen to fight on……and some of the latter have defied the odds. As long as there is life, there is hope. But, the choice is very individual. Bless you for supporting your dad in his decision. We’ll all be here cheering him and your family on…and praying for the best possible results.

Big hugs,
Julie t.