iowagirl
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Everyone, thank you for your love and encouragement. I’m still in the process of absorbing the latest scan results and dealing with them emotionally. Tomorrow, Monday, I begin doing what i must to get a handle on what happens next. I already know I have several things to clear up with Mayo and then beyond that…..I still need to do a lot of reading and research to look into second opinions and other options. At least I can say the word, “options” . Two years ago, when this all started with the one intrahepatic tumor, the options were far less.
I will check back in with news as this saga progresses….but in the meantime….I am still grammy to two sweet little boys who need me….and I need them even more right now. There are priorities…..and #1 priority is to be around as long as possible for my kids and grandkids and husband..
Love you all….Julie
Marion….. I’m just getting in the loop here…..hope your birthday was special in some way. Actually, you being here IS special. Thank you for all you do and I wish you many more birthdays to come. Love, Julie
Lainy, Yes, I do know how you feel about this….and I appreciate your frienjdship and support more than you could know. You ae more than a friend….you are family . Yes, if you were here, we’d be trying the new pickles out of the jar. Hey…maybe pickles are the “cure”. LOL Y up…..I can still laugh….just with tears in my eyes. …..for now anyway. When I figure out what we’re going to do about this…and have a plan in action, I will feel “some” better. It still sucks!
Love, Julie
Newjersey,
Gem/Cis or Gem/ Ox are the two chemos that are generally used as a first line therapy. But, there are many others. I onl y have experience with The GEm/Cis ( Gemcitibine and Cisplatin), so I can’t speak to the other chemo drugs used.
Julie T.
This is the kind of news that we all wait for…holding our breath some d ays…..but hope to hear more along these lines.
Anne and Marion…… I read something about this recently as well. I can’t rememb er the details though. When I saw the article, it got my attention, because we believe that a bacterial infection of H. Pylori that got into my liver bile duc t was responsible for my intrahepatic bile duct cancer. The inflammation that the bacterial infection causes and inflammation and damages the epithelial lining the of the bile duc t and eventually can cause a cancer to sstart. There is ample reason to suspect H. Pylori and other bacteria for some, though not all, of the cases of bile duct cancer. Research IS despearately needed.
Thanks for posting that, Anne.
Lorraine,
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.
Dear Brigitte,
I agree that talking with a counselor would be an excellent idea. I sought out a counsellor when I was doing chemo, to help me deal with all the emotional aspects of having the cancer. She was a counselor who specialized in oncology patients and she was very helpful. We actually didn’t always talk about what I “thought” was bothering me….but I was able to work through some things that I thought I had a handle on and didn’t.
Best wishes….Julie
Dennis,
I agree with Marion,….an assessment for another surgery by a qualified surgeon would be my first start. I have had a recurrence of intrahepatic CC and had a 2nd surgery. If I remember right, your CC was not intrahepatic, but it’s worth checking into the possibility of a resection along with adjuvant chemo.. At the same time, they could do that in order to get a sample of the new tumors that have popped up because sometimes there is a mutation from the original tumor mutations, if I understand this right……how Mayo explained it to me. Marion?…..is that correct? The original tumor may have different mutations than these new ones.
I haven’t had the need to try something like Keytruda, but if it applies to your tumor testing, It might be work it…… some people on here have had excellent results with it so far.
Am thinking about you and hoping you find a new direction to chart your course and get the better of the CC monster again.
Julie T.
Faisel, My deepest sympathy goes to you in the loss of your father. I know you will miss him deeply and you fought the terrible monster, CC, alongside him.
Julie T
Tony, I am very sorry to hear that nothing more medically can be done for Karen except ease any pain for her. I’m also sorry that you and the rest of her family must go through this, but know that you being there with her is the best thing you could be doing for her.
My thoughts and prayers are with you all.
Julie T.
