mizzey100

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

Thanks 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

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

Thanks so much for your kind words Kris, I am fine at the moment just clinging on to hope. Already a weight has been lifted just by talking to you all and knowing that I can share and gain so much from you all. Gavin she was diagnosed and underwent a liver resection at the Churchill Hospital in Oxford and then referred to Dr Warner at Stoke Mandeville. I have been in email contact with Helen at the AMMF who has been so helpful and has asked me to get back to them after the next ONC meeting in February if we do decide to go for a second opinion. She has been assigned an Ian Rennie nurse which is equivalent to Macmillan support i think. She saw her today and the nurse is also going to get support for her 15 year old daughter. I don;t know why but I am feeling hopeful that the chemo is working although she has now finished cycle 3 and the fatigue is definitely getting worse. Will update when we know more but just wanted to say how grateful I am in finding you all. Thank you

Thank you Duke,Lainy and Kris – I really appreciate getting you responding so quickly. My sis is seeing a hospice nurse today and I am really hoping that she can get some support from her. She is trying to sort things out in case the prognosis is realised. She is such a gentle soul and we as a family are trying so hard to get her to think beyond the time she has been given and to find it within herself to stay positive and hopeful. We are hoping and praying that February news is good and that the GEM/CIS is working. Every night I pray for a miracle and welcome your advice regarding searching previous posts. I do this daily and is what has given me hope that every case is different I don’t want Time to be our enemy but its very hard to plan lots at the moment as she is struggling with fatigue and stomach pain. Her operation went well but her wound keeps opening and she is experiencing a lot of pain still so we are just hoping that she can start to fill a bit better soon. It would be great to hear from other ICC patients so we know what we are up against. But as you say Lainy we are getting great care from the hospital already. I have been informed of SIRT which I will ask the Oncologist about in Feb. Unfortunately the cancer is appearing on the left lobe (the piece they did not remove) and I have asked about Resection to which they have said they wont be able to do. We are just really in limbo until February when we find out if the treatment is working to contain the cancer cells that are already there. Thanks again for this amazing community – I am gently persuading my sister to get involved in finding out more about her diagnosis but we do laugh, as I am the one who needs all the facts and she thinks ignorance is bliss She has a great network of support through friends and family and your support helps me to keep on gently pushing her to fight and find ways to beat this disease.