new member
Discussion Board › Forums › Introductions! › new member
- This topic has 5 replies, 5 voices, and was last updated 8 years, 3 months ago by lorrainedavis.
-
AuthorPosts
-
July 24, 2016 at 5:03 pm #92740lorrainedavisSpectator
folks, thank you all for your warm welcome and your helpful replies, I start gem/cis chemo on August 5th, lots to read about to get me ready for that!
thanks
Lorraine
July 14, 2016 at 11:17 pm #92739iowagirlMemberLorraine,
I am a 29 mo survivor of intrahepatic CC . I had a 5 cm tumor (stage T2b) that was removed during a resection with no mets to lymph nodes or elsewhere, no venus or nerve invasion either…along with a clean 2.2 cm margin. Last November, they found a 2 cm tumor had grown along the resection line and did another resection in Dec 2016 to remove that with a wedge resection. The surgeon and onc felt that the tumor was formed from a cell that escaped during the first surgery, I did 6 cycles of Gem/Cis following the first resection, just in case there were any wandering cells like this. The chemo obviously didn’t kill this one off, but who knows, maybe there were others that it did kill. The doctors seem to think it was a lone wolf cell though that just happened to escape as they were removing the section of liver with the tumor in it. We’ll never know. The chemo left some damage to my kidneys, caused neuropathy in my feet, and really nailed my hemoglobin so I had to have a couple transfusions as well as caused a blood clot that went to my lungs. But, on the offshoot chance that it did kill off some rouge cells, then it was worth it. After this second resection in Dec 2016, the opted not to require/offer chemo again….partly due to the damage to my kidneys (which is not terrible…but they don’t want it to get worse) and partly because this second tumor did grow., leaving a question as to whether it was worth the risk of damaging the kidneys further for something that may not have worked the first time. Some people have way more trouble with chemo than I did…..and yet there are others who just sail through and live a pretty normal life. I would make the same decision again to do the chemo after the first resection, even knowing what I do now.
I did some google research about the signet ring cells and found that it is a pretty rare type of cancer and is rarely found early, so you are very lucky that they found it when they did. Yes, it is aggressive, but that is probably the reason they are pushing for the chemo so strongly.. It’s rarity is probably why you won’t find much of any data on it regarding CC. Most of what I found was in regard to colon cancer. Signet Ring Cell is a sub catagory of Adenocarcinomas, the latter being the most common type of cancer in general….and the type of cancer that Is CC. Unless someone comes forward as having signet ring cells on here, perhaps the best way to find out more is by looking at the location it seems more readily found ….though even then in small numbers…like the colon. Just a thought. Oh….and one more tidbit….is that apparently signet ring cell cancer tends to strike younger people….40s where the more common adenocarcinoma in the 60s on average.
I also want to welcome you here and hope that you will let us know how you are doing and what you find out. This is a wonderful community of people ….most trying to plod their way through something they didn’t ask for and of which they wish they’d never heard. But, it is what it is…..we all go forward and do the best with can….and you will find the people on these boards to be very helpful and compassionate.
Julie T.
July 14, 2016 at 8:06 pm #92738debnorcalModeratorLorraine,
I would like to join in welcoming you to our site and congratulate you on your successful surgery. I hope you are having an easy recovery.
Debbie
July 14, 2016 at 8:57 am #92736middlesister1ModeratorLorraine,
Welcome! When I see someone so young inflicted with this disease, it’s even more maddening than the usual. However, wonderful news that they caught it early and you were able to have a successful surgery.If you do opt to go with the chemo, please make sure to read through some other’s experiences and suggestions here. My mother was 73 when she had 3 cycles of GEM/CIS. During the first one the side effects were very hard on her (she was also recovering from aborted resection). However, with adjustments of fluids and meds, the next two were very tolerable for her. She was not like some I’ve read of here who still go for a run or to work during chemo, but still said it really the second two cycles were SO much better.
Best wishes.
CatherineJuly 13, 2016 at 11:49 pm #92737marionsModeratorLorraine….welcome to our site. Congratulations on the successful surgery. How are you feeling? How is your recovery coming along?
Yours is the first posting referring to focal signet cells. I hope and wish someone will be able to share his/her experience on this subject.
Adjuvant therapy is a much discussed subject on this site, we are awaiting data release of a clinical research study comparing surgery and capecitabine with surgery alone for cancer of the bile duct or gallbladder; however the majority of physicians recommend adjuvant chemotherapy. It may consist of gemcitabine/ cisplatin or gemcitabine/oxaliplatin, but other agents are used as well.I am glad you found us, dear Lorraine, I look forward to others chiming in as well.
Please stay in touch, we care and we are in this together.Hugs,
MarionJuly 13, 2016 at 9:55 pm #12613lorrainedavisSpectatorHi folks
I was recently diagnosed with bile duct cancer, I had a liver resection 4 weeks ago and it seemed to go well. I had no sign of cancer in my lymph nodes and margins but I did have some focal signet ring cells in my tumor (supposed to be more aggressive) and some invasion into my nerves. The tumor was just over 2 cm so we caught it early. I was wondering has anyone come across the signet ring cells in their tumor? Also I am being advised to do 4-6 months chemo next, any thoughts on what drugs? or anything else I should be looking into right now? heard of targeted therapies and other things, not sure if they apply to me.
Thanks! It helps a lot to read all the posts in this community!
Lorraine
(aged 44, mom of 2 small kids, otherwise super healthy, no idea why I got this!) -
AuthorPosts
- The forum ‘Introductions!’ is closed to new topics and replies.