More information on Intrahepatic Cholangiocarcinoma please
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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.
Oh, great, Melinda. I was not aware that this was ready for view. Wonderful, wonderful presentation touching everyone’s heart and soul.
Hugs,
MarionDear Mizzey,
After the regimen of Gem/Cis, I did Gem alone which resulted in growth and spread of tumors. I then did Taxotere for about 6 months which also held it stable, but once again the toxicity built up. My saving grace has been an immunotherapy trial……but my point is ….there is always HOPE. Here is the link to my story that I told at the Cholangiocarcinoma Foundation Conference this year. I apologize, I am not a public speaker by any means, but will happily embarrass myself to help bring hope to others.
https://www.youtube.com/watch?v=tkG_Xchqfjw
Keeping your sister in my prayers!
MelindaThanks Melinda. What options have you had since doing Gem/|Cis.? My sister is on 6 months and started back in October and is struggling more and more after each session.
I have passed on all of your helpful hints and tips and kind messages to my sister which is helping her to have more courage and ask more questions and not be afraid to ask. Her Oncologist is rather cold and does not offer to much information so this is why we are building up a list of questions for Thursday x
I am so grateful for this site and thank you for allowing me to connect with you all and most importantly the valuable advice that you are offering. So Grateful x
Thanks Melinda. What options have you had since doing Gem/|Cis.? My sister is on 6 months and started back in October and is struggling more and more after each session.
I have passed on all of your helpful hints and tips and kind messages to my sister which is helping her to have more courage and ask more questions and not be afraid to ask. Her Oncologist is rather cold and does not offer to much information so this is why we are building up a list of questions for Thursday x
I am so grateful for this site and thank you for allowing me to connect with you all and most importantly the valuable advice that you are offering. So Grateful x
Dear Mizzey,
I wanted to chime in on a few things….first, I think if the Gem/Cis is working and she is tolerating it without too much toxicity, I don’t know why they would not continue. I did Gem/Cis for about 6 months with no shrinkage but stable results. The toxicity became too much for me. We are all so different and handle these treatments in different ways.
I, too, gained 30 pounds after starting chemo. I have to say that some of the blame was my attitude in the beginning and feeling like there was no hope. I thought that a diet consisting only of Reses peanut butter cups was a great idea!! In hindsight…it was not! The steroids had me eating nonstop and then caused some serious steroid psychosis……looking back it was quite comical but at the time, it was horrible!
I will keep you and your sister in my prayers.
MelindaThanks Duke for sharing some great information which I will take forward with me on Thursday.
I don’t think she has a tumour at this stage. Although they are saying secondary it is lots of small spots that are showing up on the MRI and these appear to be shrinking. I am going to ask to see the MRI scan as the ONC so we can see for ourselves what is going on.
The Onc we are seeing is not a specialist in CC so we may be going down that route if they do not offer further chemo etc. Like you Duke, my sister is struggling with sleep and is awake all night. She feels she is wasting the days catching up on sleep, but on the other hand is not well enough to do anything else.
I think our biggest fear is if the chemo stops will the cancer grow and how quickly will this happen. I guess for me I want a plan in place to make sure that we are in control but I have to be careful. I am not my sister and her poor body and mind is struggling so much. I just want to keep her strong. fighting and forever searching to beat this instead of continually hearing from the doctors that there is no cure!!.
Thank you for sharing your experience and god bless you and keep you strong
My weight returned in about six months to what it was before I experienced my initial weight loss (34 pounds). I found that “grazing” (eating many small meals/snacks) worked best. Nutrition was a secondary concern. At 5’10” and 139 pounds I was a little gaunt.
I was diagnosed in July 2013 at stage IV with mets to the liver, lymph nodes, and lungs. What appears to be the “conventional” series of treatments is gem/cis (or gem/carboplatin), then gem alone, then FOLFOX6 or FOLFIRI (which are similar). Then you start getting into treatments that your onc may have experience with. Not all agree on what to do next. Much depends on what your insurance picks up – your onc can be a great help here – but some are more successful than others or may push harder to get these non-conventional treatments. You may hear “That’s not approved by the FDA for CCA.” True, but your onc can apply for a “hardship” (not sure if that’s the exact word) treatment approval. Keep your eyes open for clinical trials. They are not always “the last resort”. In fact, if you wait too long, you may be excluded. Has your sister had genome testing done? They can help point her in the right direction for a trial. Another thing to consider is that the trial may close before you apply. See the discussion on Keytruda.
Biggest problem for me was low platelet counts which prevented many treatments.
If the tumor continues to shrink, will she be eligible for a second resection?
Biggest problem I had with steroids was that it kept me up all night.
Hang in there – we are all pulling for you and your sister.
Duke
In addition to Julie’s great explanation you might want to take a look at our home page: Staging
http://cholangiocarcinoma.org/the-disease/staging/
Hugs,
MarionThanks Julie, did you have negative margins after your resection? I will tell my sis about weight gain as she is so upset like you mentioned she thought chemo would lead to weight loss; Although I have to say I have put of loads too as we keep treating ourselves to cake!! Thank you also for defining the stages for me I will ask again when we see the Onc this Thursday. Best Wishes Michelle x
Mizzey,
I had intrahepatic CC and had a resection a year ago. The staging numbers you mentioned
T2b NO L1 V1 R2
are how they identify the cancer….how far it has developed.T2b in intrahepatic CC refers to the tumor stage. It can either mean two or more tumors, or one tumor that has invaded further.
NO means no lymph nodes were found to be malignant
V1 means that there was some microscopic venous invasion
L1 means that there was some lymphatic vessel invasion
R2 means that there was macroscopic residual tumor (this was as much as I could understand about this using other cancer staging, as I couldn’t find it in the staging of CC . Anyone else comment on this?)Yes, I gained 25-30 pounds while doing chemo (using steroids in the IV). I wish I had not listened to those who kept pushing food at me…..telling me I had to eat more to keep up my strength. It seems to be just assumed that you will lose weight on chemo and that just isn’t always the case. Since it doesn’t take much for me to put on weight…..eating that extra put on the pounds and now I’m working to try to get them back off……but it isn’t so easy as you all know.
Others will probably chime in about continuing Gem/Cis, but I know that many conitnue it as long as it is effective and the side effects (such as blood counts, etc) aren’t too bad.
Best wishes,
Julie T.HI There
Just to let you know my sister had her MRI results and great news, the GEM/CIS is shrinking the spots in the liver. It was so nice to leave on a positive note for once after hearing the sad news just before Christmas that they were no longer looking at a curative approach.We have another oncology meeting this Thursday to see how she is tolerating the chemo as her neutrophils have been too low on a couple of occasions to go ahead with the chemo. We are coming to the end of the proposed cycles of chemo and was wondering if anyone else is or has been in a similar position to her. I guess we need to know what are the next options. Can she continue on with GEM/Cis or what else is there. Her main aim is time now as she is a single mum with a 15 year old child and desperate to see her graduate and mature into an Adult…
I would be so grateful If anyone could advise me on what tips to ask the Drs when we see them on Thursday. My plan is to ask to see the scan and explain exactly where the metasteses are. After her resection she was staged at T2b NO L1 V1 R2. Not sure what all that means but was thinking of asking if this is still the same. Can anyone help with this. I know that cancer is still retained in the liver with no lymph node involvement so taking that as really good news and should buy her more time..
I want to go prepared for THursday as usually when we get the results it is so hard to think of the questions until after the meeting which is then of course too late. I also need to be careful as don’t want to dampen the good news in terms of how the chemo is working so far as my sisters spirits are very low as she feels so poorly. Also has anyone with ICC gained weight as a result of the steroids she is having for chemo ? Would love to hear from you and any advice gratefully received xx
Mizzey,
Not sure really but I am sure that your sister will be in good hands with either. It could be the case that the hospital that your sister was treated at has very close links with Rennie and perhaps they recommend the services of a Rennie nurse to patients they treat rather than that of a Macmillan nurse. Just thinking out loud here with this, but I wouldn’t be concerned with this if I was you.
How is your sister doing today?
Hugs,
Gavin
Thanks Gavin do you know why my sister would have been assigned a Rennie nurse instead of Macmillan?
Hi Mizzey,
Many thanks for that. I am real glad to hear that you have been in touch with Helen, she is a gem and will be of great help to you. She also has many many contacts in the UK and will be able to give you excellent advice re further treatment etc in the UK.
Glad to hear that your sister also now has the services of a Rennie nurse and I am sure she will be in good hands with them. They are hospice at home nurses, different from Mac nurses but she will be in good hands with them I hope.
My fingers are crossed for your sister with her chemo and loads of positive wishes are heading down your way from up here. Please keep us updated on everything and remember that we are all here for you.
Hugs,
Gavin
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