iowagirl
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Porter, thank you for the info on your incisional hernia. I saw my GP today to have her give it a look. She did not think it was anything serious….in fact she said straight out that it was not something serious, though she really didn’t give me a great explanation either. She said that it definitely wasn’t anything having to do with the cancer. And, she said she’d seen a lot of hernias in the course of her long practice and it wasn’t a hernia. Sooooo????? What then? Today, the lump had gotten much smaller, but is definitely there still, so she didn’t feel it when it was at its worst Monday night. The Mayo surgeon said the CT I had at the end of Dec showed some thinning in the abdominal wall, so I’m “thinking” that maybe what my GP was getting at is that there is no actual hole yet in my abdominal wall, but the intestines (and contents) bulge against this thinned place occasionally more than other times causing this lump type thing. It receded when I had a BM…but not completely. Since it’s on the side where a hunk of the left liver lobe was removed, it seems that it’s logical that intestine has moved over to fill in some of the space and is bumping up against this particular place under the incision where the wall has thinned.
Okay….that’s my take on it. My “plan” is that if I get into a situation where there is really bad pain or a bigger lump appears…I’m headed to the ER here in town. But, otherwise, I will wait until my Mayo appt in mid April to see what they say about it then. I can also always call my Mayo surgeon. This may be just a change in anatomy following the surgery coupled with that thinned abdominal wall area under the incision and nothing more…..something I will have to just get used to. GRRR. But, in the great scheme of things….it’s minor. I was just so bummed the other night at the idea of yet another surgery. But, for now, it looks like that isn’t going to happen any time soon….and it’s not the big CC……so I will try to not sweat it.
Julie T.
Brigid,
Welcome to the group here. It’s really more of an extended family. Let us know more details if you feel you can. It’s always good to share stories so that other people can research and possible gain from your experiences. There’s usually someone on the boards, or lurking, who will respond to a post, but just a head’s up that things are usually slower on weekends.
Julie
Lorraine,
This may not be the case, but the reason for them not mentioning MRI scans may be that the MRI is very much more costly and time consuming to perform than a CT. That was a big concern for my doctors on my regular scans, but since my health insurance pays out on just about everything, so in the end, it wasn’t an issue for me here in the States. We have a high out of pocket/deductible policy, but after we’ve met that, there are few exclusions. I haven’t run into any yet. I was just thinking though, that the CT cost (a couple thousand dollars) compared to an MRI being maybe 3 times that may be the reason the MRI hasn’t previously been mentioned for Donnie. However, I can’t believe that a good doctor would withhold the information. It sounds like either your doctor either doesn’t have a good grasp about CC patients or he is pressured not to use the MRI for the cost. Just my guess….but something doesn’t sound right. So glad to hear that Prof Wigmore has given you some positive feedback. Maybe you can use that for some leverage. ????? Best wishes.
Julie T.Oh…BTW…..I had previously done Gem/Cis chemo which damaged my kidneys. My creatinine ranges between 1.1 and 1.4 on a scale where 1.0 is at the top end of normal. My GFR dropped down as low as 45 (with 60 being the bottom end of normal). It is 50 right now, but the doctors refer to it as kidney damage and probably permanent. They do not seemed to be concerned about the MRI contrast on my kidneys.
Julie T.
I can not do a CT scan with contrast because of a potential allergic reaction, so instead, my Mayo doctors came up with me having a CT WITHOUT contrast of my lungs and and MRI WITH contrast of my abdomen and pelvic area. I don’t know if that would work for Donnie or not, but the contrast medium used are different for the two types of scans. When I did the CT with contrast in the past, they really pushed a lot of water before and after the scan. Now that I only get the MRI contrast, they no longer push water (though it wouldn’t hurt of course).
Julie T.
Lisa, I did not have such an extended surgery as your husband and can not add anything regarding digestive issues, other than I found it difficult to eat any significant amount at a time. People kept pushing food at me and I gained instead of lost weight, which was not good in my case. As to the tears and sobbing, I can attest to the fact that it just goes along with the diagnosis, surgery, and healing process as well as long term living with this over our heads. That said, I can also tell you that it does get some better. After having a resection in Feb of 2014, I had a recurrence found in NOv of 2015, almost 20 months later. Every scan brings up the fears again and the tears eventually flow. However, I was surprised that with this recurrence, I shed tears for the first several hours after hearing the news and then after that, I seemed to do pretty well. I think my oncologist having already contacted a surgeon for a consult the same day before I even saw the oncologist and heard the news of the recurrence had a lot to do with me handling it so much better this time around. I didn’t have the time to wait out a lot of testing….just got the news, talked to the surgeon and set up the surgery date. It was before Thanksgiving and Christmas, and the time really did go so fast with all the shopping and cooking to be done before the surgery. Keeping busy may be another good way to get through this better…..something to keep your mind off of the CC and the “what ifs”.
Julie T.
Totally awesome, Matt. Great news! Wish I was going to the conference in Salt Lake, but I’m still recovering from the surgery and we have the little grandson we’re babysitting, so I have to lend a hand there from time to time, if only to wash baby bottles and sit beside the little guy to keep him out of trouble.
. If I got to Salt Lake, I’d have to stay another week just to do genealogy research too. Just thinking of all the fun makes me smile. Have a good time and make a difference for all of us who can’t be there.Julie T.
Ashley, Congratulations to you and Tom on his getting into the trial. You are a wonderful caretaker and wife. I love that you have taken it upon yourself to be the researcher so that he can have some downtime after his job and enjoy life. Don’t forget about yourself though. I know that you just want him around longer and would do anything to achieve that though……I get that. But the love you have for Tom is very apparent and you’d do anything to protect him and keep life as normal as possible for him. I look forward to hearing good results posts. Now that you’re on the trial, it probably feels different. That’s because you’re doing “something” and have a “direction” to go with treatment. Again…congratulations and best wishes.
Julie T.
Donna, Welcome to the group and boards. I am an intrahepatic CC cancer patient/survivor, having just had my second resection in Dec 2015. You have been through quite a bit from an early age. It’s just remarkable that you seem so matter of fact about all of this. But, I admire that, because you seem to be able to step back from yourself and look at some of this logically. The only problem is that none of us have a crystal ball to figure out the best course.
You may want to look at getting another opinion as to ideas for how to go forward right now. This is especially since you say that your doctor isn’t all that familiar with CC. He may have done well for you for quite a while, but this may be the time to bring in some big guns and get other viewpoints. We encourage second , third and even more opinions .
If you go ahead with the trial, I wish you the best possible luck and pray that it is your answer right now.
Julie T.
Pat…..thank you for your post on the anniversary of your liver resection. First, it gives hope for others here. Second, it is a beautiful reflection on life in general, with or without CC. I loved the analogy of being like an actor in a play and not knowing how the play ends. That really is the story of every life.
Julie
Matt…..Good to see your post. There’s the good news all the way through kind of neutral news to “What the heck” news in that post.
First…..CA19-9 continuing to go down….GREAT NEWS
Second…No evidence of disease…..GREAT NEWS
Third…..recurrence “might” still be there…..Still not bad….speculation that it is there at all
Fourth….High Liver Labs….possible auto-immune response to the Keytruda.
Question: Has that been a known response for others taking Keytruda in the past? It sounds logical. The Prednisone certainly sounds like a logical attempt to dampen that response. Hope that works and you can continue on once you get past this small hump.Hope the labs look better next week and that you don’t have to make the trip out to Mayo…and things can forge ahead with more Keytruda and continue to kill those beasties.
Julie T.
Marion and Cathy….thank you for your posts in response to my problems with post op pain and the mixed reading of CT scans, etc. It was my GP who wanted me to hand carry my CT scan to the surgeon at Mayo, so I definitely give her credit for that. As of right now, the huge pain I had in December has stayed gone. I still have a small area under that incision which occasionally gives me a “tug” that doesn’t feel great, but I can’t even say it hurts. It’s just a very mild tug of momentary discomfort which I suspect is from the part of the muscle that was cut during surgery…..still healing.
Julie T.
Marion,
I did not know about the 50-Gene panel test, but if it was an option, I am thinking it may have been because I told them I wanted it sent to Foundation One and that they did not feel it was warranted to do at this time. I will ask about it next time I go to Mayo in several months and see if I can glean any info. Thanks for the head’s up.
The new tumor is still at Mayo of course, preserved in a paraffin base, which is acceptable to Foundation One and probably to Mayo also, so I can still have it run if I want to do that.
Foundation One is still more extensive than the 50 gene panel test though, right?
We had talked prior to surgery about possibly putting the tissue into a study they were doing in which it would be analyzed for mutation in house ,but that fell through, the day of surgery. It would have been a pretty neat study to be part of…..my only part being donating the tissue. I will share what little else I know privately about this if you are interested.
Julie
Debra,
Yes…that’s an excellent choice of words…”guarded optimism”. Thank you. Words sometimes escape me…one of the issues with chemo, I’ve had. I think that Mayo would agree with that choice of words also. THEY want to follow me very closely, so we’re all good with that. The one other thing I also failed to mention, is that Mayo never sugar coats anything, so for them to even be this positive, gives me reason to try to think the prognosis really is possible. That said…..they are “practicing medicine”, right? LOL. I won’t be terribly surprised if another tumor pops up…..it’s that guarded optimism. But I “want” to believe that they are right.
In the grand scheme of things, I may have 30 years (mother’s side has super longevity) or I could get run over by a bus tomorrow. I’m going to try to find something in each and every day to enjoy in the meantime. Right now, we have two very sweet little grandsons to keep us occupied and put smiles on our faces.
And…how many more days until spring?
