iowagirl
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Daisy, I did Gem/Cis….the usual chemo for CC. I did ask about radiation, but my Mayo doctor simply said, “There’s nothing to radiate.” I have wondered about that…..but went along with it. It seemed to make sense at the time. Julie
Daisy, Yes, I did do adjuvant chemo….6 rounds from late April until the end of August last year. My Mayo oncologist said it was up to me and wasn’t pushy about it…but when pressed….he said if I were one of his family, he’d encourage me to do the chemo after surgery. My Mayo surgeon wasn’t quite so layed back about it…..she told me flat out that I WAS doing the chemo….that they don’t do this surgery without me doing the chemo. Didn’t really matter what she said at that point…because I’d already made up my mind to do the chemo anyway.
Julie
Thank you dear friends, for your encouragement and rejoycing with me. It’s sometimes hard to share good news…or feel right about sharing good news …with so many others not having prayers answered. But, I am constantly looking for good news from others…..something to raise my hopes. Sometimes we all need confirmation that that miracles do happen…and if they happen for others….they can happen for us too.
No new baby news yet…..but THAT will be the next thing I share as “good news”. The new little guy will be the center of our attention M-F from 8-5 p.m. as we have agreed to baby sit him full time. We’re trying to make plans for the future….and move on.
Love you all,
Julie T.When I had my surgery last year (Feb 2014), my oncologist mentioned that the surgeon had said she was going to do my resection laprascopically, and he was surprised that it would even be possible. We went into the surgery knowing that the surgeon might convert to an open surgery, but she did the whole thing laproscopically. The left lobe was removed with the 5 cm tumor inside, no tranfusion, 7 hours, and home in three days. I understand now just how still more unusual doing this intrahepatically really is
Hi….my experience was that the side effects like nausea and tiredness didn’t really get worse each time…..that is, more severe, but they lasted longer. Instead of the nausea being maybe a couple days….eventually, by 4-5 rounds of the chemo, it was every day, including the third week, which was the resting week between infusions. The blood labs can go down and up, bouncing around during the whole time, but in general, the effects on the blood labs are also cumulative as well. For some people, the out of range labs hit fairly soon into the chemo, but for others, it isn’t a big problem until 3- 5 rounds and for some, it’s never really much of a problem at all. It just depends on how your body responds. Mine we’re significantly out of spec by round 3, but still okay to do chemo. By the end of round 5, the numbers all were entirely out of whack…with hemoglobin at 7 (and requiring transfusions) and platelets very, very low as were WBC and RBC, etc. I took one extra week’s rest between round 5 and 6 and that brought some of the numbers up enough to do round 6 and “I” felt better mentally about it…even though there were good enough at the usual week to do chemo. Even so, the oncologist did the round 6 at 75% solution….and it still knocked all the numbers into the tank again. At that point, thank goodness, I was done with the whole chemo thing anyway…..but I’m sure I would have had to have sat out more weeks if I’d gone on longer….no choices.
Congratulations to the grandma…..and the whole family. There’s nothing like a little one to take your mind off of things. Our 2nd grandbaby (a boy) is due April 3….just a couple weeks…..so I know how you’re feeling. Wonderful, isn’t it?
))Julie
My deepest sympathies in the loss of your mother and brother. I know how heavy your heart is, but I also hear in your words, your deep love for your mother. She must have been a wonderful woman to have raised a very special family who cared for her the way you all did.
Julie T.
Bob,
IMO, this is certainly an appropriate forum for this case. Often, it is difficult or impossible to definitively diagnose CC (cholangiocarcinoma) even from a biopsy and blood tests. All my blood tests were totally normal, even though the CT showed a 5 cm tumor inside my left liver lobe (intrahepatic). Since liver cancer, itself, or mets from elsewhere are far more common than CC, they went looking for some other primary cancer site, but nothing showed up. The biopsy only showed that it was an adenocarcinoma, but no cells gathered indicated origin. The Pet scan was totally clear except for the tumor in the liver. It was not declared to absolutely be CC until the pathology came back after surgery (left lobe was removed as it was in an operable position).
I’m not familiar with Abraxane, though others here probably will be. Typically, CC patients will get Gemcitabine and Cisplatin as chemo to try to beat back the tumors.
Where is your mom being treated? Have you considered getting a second opinion elsewhere?
Just going through all the testing is enough to fatigue a person. I remember that part well. Please give your mom hugs from me. You are doing all the right things….asking the questions and seeking more information.
I’m sure others will be along soon to greet you also and probably have more thoughts on your mom’s presentation.
Julie t.
Dear Mizzey,
I just noticed that you asked me a question about surgical margins. Yes, I had negative margins (no sign of microscopic cancer cells between the tumor and the surgical cutting line on the left lobe ….most of the lobe was removed). That surgical margin was also 2.2 cm, which is large by surgical standards, which I believe my surgeon did to be on the aggressive side against the cancer.
A little more info:
1. I had 6 Hilar lymph nodes removed and all were negative…no cancer cells.
2. 2.2 clean /negative surgical margin
3. No neural invasion
4. No venous invasion
5. No mets
6. Stage T2bThe problem is, that you can have clean surgical margins, but microscopic cells can already have been shed by the tumor before surgery and have already moved to other places in your body (other side of the liver perhaps) where they grow bigger until they can finally be seen by a CT scan , MRI or Pet scan. And…unfortunately, only the passage of time will tell if that is the case, or not. So, far, I’ve been fortunate that nothing has shown up, i.e. recurrence, but it’s a long while until I can be called “cured”, if ever. I think the word, cure, is something not really within my grasp right now. Instead, I am NED (No Evidence of Disease)…..and in a holding pattern.
I had to chuckle about eating cake, as that is what I used to do as a job…I ran a cake shop. The last thing I want to eat is cake.
Julie T.
Thanks Marion, this sounds very good and glad to hear that they are proceeding to human trials. Awesome!
Julie T.Marion, Thank you for filling in my gaps with hard info on CTs, MRIs and PET scans. It is very true, that the person reading the scans and their abilities make all the difference in the reliability of the scan results. I might add to that…..that the computer monitor used to view the results also makes a big difference. My Onc said that with his screen in the exam room, he could see the CT results fairly well, but the MRI results were harder to read, even though it was a well-done test and had “good slices”. That was purely due to the quality of the monitor image. He said that the radiologist who actually read the results and do the reports have a different monitor. That said…he always re-reads the scans himself to double check the results…looking for anything that might have been missed.
Daisy,
I have been getting CT scans with contrast this first year following surgery, except for one time when my onc forgot to give me a steroid to take in advance (I had a potential allergic reaction previously, so the steroid was to hopefully keep me from having a full blown reaction). That time, they did a MRI with contrast instead. However, in Nov, I had another possible reaction…chest tightening pretty badly….so last Friday, when I went for the CT with contrast (having taken the two steroid pills), the radiologist did not want to do the CT with contrast even WITH the steroids as he was concerned about a bigger reaction. After consulting back and forth, the radiologist and oncologist decided to do a CT without contrast of my chest to view my lungs and then do an MRI with contrast of my pelvis and abdomen.
According to what I understood….the MRI with contrast is a better picture, assuming that the person being scanned lies perfectly still, holds their breath well for timed periods and breathes fairly normally. It is a longer test by far than a CT scan and for those who get anxiety in a very enclosed space, it can be difficult to get through. That said, when I was in the MRI scanner this time, I was in feet first with my head out of the tube, or within a small distance of the opening of the tube, so it was nice to be only a part of the way into the tube and not so closed in. Note, if you ever need to do an MRI….just close your eyes before going into the tube and keep them closed and it will reduce your anxiety levels.
The oncologist also indicated that the CT with contrast was an easier to read image for most, but the MR with contrastI was a better image if done well. I didn’t really understand just why they didn’t do the chest part of my scans also in the MRI instead of doing a separate CT without contrast, but that is what is now planned for all subsequent followups scans.
My scans are limited to the three areas, pelvic, abdomen and chest because those are the areas where the CC is most like to show up if it returns. In reality, the major area for me would be in and around the liver since my tumor was still in the liver and hadn’t spread when it was removed. But, since CC can do the unexpected, my oncologist is more comfortable seeing the lungs as well.
As for all of the above, it comes down a lot to the discretion of the oncologist ….what they prefer. I would love to dump the CT entirely because of the increase of radiation exposure that comes along with the CT and not with an MRI.
MRIs are generally more costly than CTs.
