Topic: Pain??

Hi Everyone,

My mom (45 years old) was diagnosed with Intrahepatic CC - she is not able to undergo surgery because of her tumor which is 6x9cm, spots on the liver, as well as lymph node involvement. They have put her on Gemcitibane/Cisplatin and this is her 3rd cycle (she is due for a CT scan on the 15th of March).

My question is whether or not pain on/near the location of the liver is common while on chemotherapy? My mom has been fine for the most part with a little discomfort on that part of her body but yesterday after consuming a cheese biscuit she said that she developed more pain in that area. This apparently happened a few days ago after she consumed coffee. I am very worried for her and am hoping this is not a result of the tumor growing, does anyone have any information on this?

Also, god forbid the chemotherapy is not working to stabilize/decrease the size of the tumour does anyone have any recommendations/success with other chemotherapies with the same type of tumour location?

Any advice will help. I am the only one in the family that is aware of the extent of her illness and I like to prepare myself for good as well as bad news in advance so that I can focus on my mom's response - the more information the better.

Thank-you!

Re: Pain??

Dear Milenzz, welcome to our extraordinary family but sorry you had to find us. I cannot help with chemo questions as my husband never had it BUT I would call the ONC and advise about the pain. We really try to keep our loved ones as pain free as we can. You are so right about being informed and that is why we tell our Caregivers to read as much as they can as knowledge is our most powerful tool for fighting CC. We are also big believers in 2nd and 3rd opinions as new eyes see things differently and also for validation. May I ask why you are shouldering this yourself? The family really needs to work as a team for best results, non of us are supermen/superwomen and it is an immense responsibility for one person to shoulder. Please keep us updated as you have arrived at the best place to be and we truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Pain??

Milan, I understand. I promise you that you are going to receive lots of feedback. Daytime is a little slow with people working but never fear, our family LOVEs to help! You are here now, you are NOT alone, this is the most compassionate community you will find anywhere! Hang in, be strong.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Pain??

Hi Milenzz,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your mum. But I am glad that you've joined in with us here as you've come to the best place for support and help, and I know that you'll get loads of both from all of us here.

Like Lainy, I can't help you with any personal experience regarding pain from chemo as my dad never had chemo at all. But there are so many members here who they or their loved ones have or are having chemo and I am sure that they will be along soon to share their experiences with you about this. As far as general pain went, my dad was able to control that with first off all paracetamol and then later on with codeine based pain meds.

You say that your mum is tolerating the pain just now as it is not extreme and that is fair enough. But I do agree with Lainy that pain is something that should be investigated and perhaps you could discuss this with your mums Onc when he/she gets back from holiday. And should the pain get worse then perhaps your mum could see her local doctor instead of the nurse if need be.

Here is a link regarding pain that may be of use to you -

http://www.macmillan.org.uk/Cancerinfor … /Pain.aspx

Keep coming back here Milenzz as we are all here for you. We can so relate to what you are going through right now and you do not have to go through this on your own. Ask as many questions as you have and we'll do our best to help in answering them for you. Please keep us updated on how things go for your mum and know that we care.

My best wishes to you and your mum,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Pain??

Hi,
Lying down will help. Most  pain are dull and not sharp pain except in the end stage of the disease. I am a patient for 45 month.(ICCA), occasionally I had dull pain after 8 hours' work;but when I am home, I just lying down in bed and the pain will go away.
Pain is not common for intrahepatic CCA (ICCA). even in the size you mention.
Of course if it press against one of the nerve around  an organ(,ie; the bone) then it is a different story.
there are a lot of other treatments for ICCa,depending on location RFA,TACE, nanoknife IBRT and radioembolization are related to radiational treatment; a lot of other systemic chemotherapy and targeted agents can also be used for this disease.; and of course liver resection after neoadjuvant chemotherapy .
The hope is alive and the dream of being cure will come true someday.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Pain??

Hi milenzz,

You must be very young having a Mom that is only 45. Bless you for caring so much for her. My daughter, Lauren has CC. She is only 26. She had liver pain while on chemo. She always said her liver hurt a lot after having chemo. We figured it was the chemo doing it's thing! Your Mom should have pain meds. Nobody should ever have to suffer with pain. Lauren has morphine, fast acting morphine, and hydrocodone. Some people don't like to take medications, but they do help. She takes a long acting morphine every 12 hours and fast acting for breakthrough pain. She doesn't feel the hydrocodone does much for her so she doesn't take it much. Lauren has a lot of back pain as well and that is mainly why she takes the morphine. I think her liver gets sore when she is sitting up a lot. Her liver is really big. It feels better when she lays down, but how practical is that when you want to be an active member of society! Don't give up hope because Lauren was unresectable for 17 months, but recently has been put on the schedule for a 2 part resection. Her first surgery is March 26th!! If all goes well, she will have the big kahuna surgery 6weeks later. Please tell your Mom to ask for pain meds. I can't believe they haven't been offered to her. Well, take care and I wish your Mom all the best.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Pain??

Thanks everyone for all your love and support,

I am only 22, so it has been quite hard on me. With regards to the pain medication, my mom is not a big fan of taking strong perscription medications as she feels they will continue to "poison her liver" at the same time, her pain is not exruciating. At our cancer treatment centre she is asked to rate her pain from 0-10, 0 being no pain and my mom often chooses 2-3. The oncologist always asks but my mom says its not necessary as it is not agonizing.

My mom explains the pain as dull, in the beginning of her journey she had absolutley no pain (December 11th). The first time she was admitted to the hospital the doctors would press down on her liver and my mom felt absolutley nothing. It wasn't until they placed a metal stent, and then performed a liver biopsy that she felt pain. For the longest time the doctors couldn't establish whether or not the pain was stemming from the liver biopsy as she had internal bleeding (that was apparently resolving itself) or if it was the cancer.

Pamela, I am so glad to hear that your daughter is having the opportunity to have a surgery especially because she is so young and deserves to enjoy the rest of her life! I told my mom about your daughter's story and she was so inspired and motivated - so it's nice to hear great news smile Did your daughter have a billiary stent?

Re: Pain??

Dear Milan, you are doing great! We are all here for you, you are NOT alone. What a wonderful son you are. Beside being informational we do try to inspire HOPE here so I am so happy you are sharing us with Mom.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Pain??

Sorry Lainy, my real name is Milena - I'm a female lol!

Thanks for all your support smile

Re: Pain??

Oh, beautiful name. I actually grew up with a guy named Milan so I just assumed! Never assume, but I never listen to myself! Now we know all about you, too!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Pain??

Haha Lainy! You crack me up. This reminds me of a funny story my husband told me last night. He is a manager for a large car repair facility and had a work order for a person named Kimberly. There was a guy sitting there and my husband said, Well, I guess this must be your wife's car since I don't think your name is Kimberly. He was shocked and embarrassed when the guy said, My name is Kimberly. How would you like to have to go through high school with the name Kimberly when you are a boy? I told my husband never assume a name is male or female. Their are guys named Ashley, Lindsay, Shannon, Robin, Chris, Pat, etc. I had a friend in high school that had a brother named Kimberly Gene. Wow! So don't feel bad, Lainy. Some people use their user name as their name and I really can't tell if they are male or female. It makes it tough sometimes.

Milena- Beautiful name and I'm glad we got that straightened out! My daughter has not had any biliary stents. I hope she never has to. I know they are very helpful, but also seem to cause people a lot of problems. I think that is mostly with the plastic stents since they seem to clog quickly and need changing. Lauren had a lot of pain after her liver biopsies. She has had two. The pain did go away though. I don't really know if she is in pain most of the time because she is very stoic and never complains. Try and convince your Mom to take pain meds if she is in pain. They help so much. Lauren is asked about her pain at appointments too and usually says she is at a 0 because she has no pain with her meds. I hope your Mom's doctor can figure out what is causing the pain. Take care and I am hoping for the best with your Mom's scans.

Love and hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Pain??

LOL, Pam. You crack me up too. I think if we ever got together it would be a rip roarin time. Well, as much as I can rip and roar anymore!!!!!!! Love Ya!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.