tiah
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Mrucci, my mother has intrahepatic CC, and as in your husbands case she was seemed unresectable. She underwent chemotherapy with FOLFIRINOX which is quite an aggressive chemotherapy regime used commonly in pancreatic cancer. She did not receive any gem/cis. Scans showed shrinkage at 4 rounds/8 weeks of treatment, and we are due to find out further results today of a total of 8 rounds of treatment. If it shows more shrinkage they are aiming for surgery. She has had no radiation so far. I wish you and your husband all the best with his treatment,
Tiah.
Hey all,
Thought I would post an update. Hope you all had a great Christmas!
Mum has just finished her 8th round of FOLFIRINOX, however the last month has been a stressful route. We’ve had continuous issues with bladder infections, no hospitalizations but lots of pain and antibiotics. Apparently there is also candida present in her urine sample (not surprising with the amount of antibiotics she’s had) and the past few days more abdominal pain, which I’m putting down to constipation. She’s lost quite a lot of hair, however now that she’s finished 8 rounds hopefully it will start growing back.
On the 6th of January she’s due to have another CT – abdominal, chest etc to see further progress. Her lungs were clear last scan (4 rounds/8weeks prior) and the tumor had a 1cm shrinkage from a whopping 8cm tumor so we were very pleased with the progress. I will let you all know about the results of the scans and if the surgeon is happy to progress with surgery.
I’m very nervous about the surgery as I’ve read odds are not good and a large amount of the liver will be removed due to the tumor size. Also sadly, I have to move 2 hours away from her in a weeks time for work (which is a fantastic career opportunity and she told me she’d be devastated if I don’t go), but I am nervous about leaving her, but I will travel back every weekend to be with her. I’m hoping she can keep her spirits up because she’s struggling a lot recently.
Tiah
Scott, my mother is on a different chemotherapy treatment to you but she’s also had some intense nosebleeds! And she has experienced funny smells and tastes! All part of it I think!
Hi Sandie, I’m glad to hear that your Mum is on the mend with her stomach issues. It sounds like you’ve left the oncologist appointment more confused than when you came in, which isn’t good but at least you can have a chance to regroup your thoughts.
The surgeon will be able to clarify the real plan as far as being a candidate for surgery based on the location of the tumor, any metastasis and nodules in the lungs etc. If her lungs are actually clear then her chance of a surgery is much more likely, but the surgeon will need to assess if they are confident in removing the complete tumor(s).
There is a chance that the cancer could also shrink enough to have surgery in the future, although I am not sure what this is like on Gem/cis chemo.
Here’s hoping we get some good news at the surgeon appointment,
Tiah.
Rosalie, please do not give up hope, especially if the tumor is localized! Surgery can still be possible with neoadjuvant chemotherapy or radiotherapy (ie. Shrinking the tumor first). My mum was told that they could not perform surgery and she’s currently receiving chemotherapy to shrink her tumor which is working! So please, don’t give up. Much love for you and your family, Tiah.
Thanks so much for all your well wishes everyone! We have some great news! There is shrinkage!!! The tumor is starting to distance itself from the main artery in the liver and it’s starting to break down! Also no metastasis/spreading. We had many happy tears just now. The ONC and surgeon have agreed on 4 more rounds (so it’ll be 8 in total) then surgery! Woohoo! Today is round 5 of chemo.
Thanks for your well wishes everyone! Very appreciated
Thanks girls! After I took a look at her back and found out more about her symptoms of the back pain and in my knowledge as a pharmacist it appears to be flank pain (pain originating from the kidneys). Some reading of her drugs and I’ve noticed Oxaliplatin can be associated with this (maybe cisplatin too?). If this is the case, it’s chemotherapy related rather than cancer which I reassured her and she felt a bit better, but we’ll discuss the pain with her onc on Monday
Thanks Lainy. It seems she’s starting to worry herself sick, she says she has an absolutely horrible feeling that she is going to get bad news, she has been having some light back pain and she says she just doesn’t feel “right”. Not sure if this is a psychological thing or if there really is something wrong, but I’m trying to reassure her not to worry and that there could be some good news on Monday.
Yesterday mum had her first scan (8 weeks) since starting chemo. We are awaiting the results on Monday when we see her ONC before having her next round of chemo.
I must say I am incredibly nervous about it. I’m glad he has decided to do a scan earlier than we initially thought, as we aren’t wasting anymore time on a treatment that may not be working. As for her current state of disease, to this date she still has not had any symptoms related to the disease (other than some skin itching, which was present early in her diagnosis, but the last few weeks there has been none). Considering how large her tumor is, I’m very shocked we haven’t seen any issues with the bile duct and still no jaundice, however we are very very grateful. She has maintained her weight also (up/down 1-2kg – nothing drastic).
As for her chemo, the day she receives it is the worst. The Irinotecan drug she receives causes painful leg cramping, which even occurred after her ONC gave her a 1 hour magnesium infusion prior to receiving the chemo. The leg cramping disappears after 24 hours. The lethargy its the worst she is experiencing, and she also has thinning out of her hair, which is all to be expected.
It’s still very hard to think she even has cancer, because she still lives life as per normal, except for the chemo. I’m absolutely dreading walking in on Monday to be told that the chemo has not done anything and the disease has progressed. We will not give up but I am petrified of seeing her go down this route.
Hi Sandie,
My name is Tiah and I’m also from Australia and much in the same position as yourself, as in August my mother was diagnosed with cholangiocarcinoma. I’m very sorry to hear about your mothers diagnosis. The good thing about public hospitals are that they possess some of the best specialists you will find, however sometimes a good specialist doesn’t mean there is always an easy treatment option.
The most important thing when visiting her doctor, is to go prepared with questions, perhaps writing down a list. I have often found I am left thoughtless when I go to an appointment to see my mothers ONC, but then about 2 days later I’m packed with so many questions I would like to ask. You will feel much better yourself when you go to the appointment, as you yourself can feel involved in helping your mum make the best decision for her, rather than trying to guess what is really going on with her treatment.
Another thing you could consider is clinical trials. While palliative chemo is probably going to be the first line, you may find that there will be a progression free period of the disease, in which time you might be able to investigate if there are any trials for new medicines available in Queensland. I’m not sure where you are based in Queensland, but I know the trials would likely be in the major cities: Brisbane, Gold Coast, possibly Cairns/Townsville. However, I am based in Adelaide so I don’t know much about the hospitals up there.
I think she has made the right choice to give the chemo a go and see how she tolerates it. Chemo can be very scary and daunting to start with, but it can become part of a usual routine and cancer centres are very good at managing side effects as much as they can.
So I discussed this with my mothers oncologist today prior to her chemotherapy. He said there was very little evidence regarding Metformin in any type of adenocarinoma, and he had personally done a study with some other oncologists years ago and nothing positive had come out of it. He then suggested that if there is something worth taking as an addition to the chemotherapy, low dose Aspirin (100mg daily) would have some benefit due to the COX-2 inhibition. We will likely give this a try.
Thanks everyone, I am a pharmacist so I do have a great understanding of this drug, how it works (in diabetes, not CC) and the risks and side effects associated with it. I just wanted to see if any CC patients here had taken it and what oncologists had thought about the study.
The study above seems to be about met forming in CC rather than preventing it.
As for non-diabetic CC patients, I wonder if it will have any role. Metformin is used by non-diabetics in certain circumstances but I guess it may be something we may never kno
Hi Jessica. What an amazing and strong person you are. My mother was also recently diagnosed with CC and at 22 years of age, some days I struggle to cope. At the moment my mother is requiring emotional support more than anything, and is fortunate to not have too many issues with her chemotherapy, but at this stage she is also inoperable.
Having also lost your father to the horrible disease that is cancer, it is amazing you still remain so positive and are there for your mum. Best of luck and hopefully they can find out what is going on in the ED and get her back home to where she is comfortable, and possibly find her next treatment option.
That’s great to hear that you seem to be responding well, and of course it’s understandable that you would feel over it. Looking forward to hearing the results of your CT.
Hello fellow Aussie. My mum was diagnosed with intrahepatic CC and is currently in a position to yours – inoperable due to location and hence on neoadjuvant chemotherapy with the intention of surgery once the tumor has shrunk. May I ask which chemotherapy regime you are on? And how you have been with it so far? Good to hear the tumor markers are decreasing!
