Topic: An introduction and a thank you

Hi, after four weeks of exhaustive tests with many twists and turns my partner of 20 years was diagnosed with intrahepatic CC just over 2 weeks ago. He has a 12 x 12cm tumour in his liver, 5 cm lymph node involvement around the portal vein and lymph node tumours in his chest with the likelihood of other sites being involved. Apparantly it is very aggressive and poorly differentiated and inoperable and he is on a gemcis regimen of 3 weeks on 1 week off in the hope that he will receive a little more time.

Although I think we're coping ok, we're still so shocked at the speed of this disease. Three months ago he played in a soccer tournament and his only sympton was a bad cough. Now he struggles to walk up stairs and is very weak. Thankfully he is coping with the chemo well, except for a very sore throat so if you have any suggestions for that they would be very welcome.

Thank you so much for this site. I searched and searched for information and was having very little luck until I stumbled onto here and it's really helpful and reassuring to know that we're not alone. I'm not much of a poster but did want to let you know that you're helping people around the world.

Thanks and regards
Elsie, Sydney Australia

Re: An introduction and a thank you

Dear Elsie, welcome to our wonderful family where you will find the most courageous and caring people in the world. I am sorry to hear about your partner and yes it is monster, this CC. The only thing I can recommend for the sore throat (don't know if you can get it there) is Chloraseptic. Its a spray and works quite well and you can use it as often as you want. Gem/Cis seems to be our cocktail of choice around here. I understand not everyone likes to keep posting but please check in now and then and let us know how things are going, we 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: An introduction and a thank you

Elsie, all our love and support to you and your companion.  My "supposed" tumor in my liver is"VERY" undefined, so much so that they have not officially diagnosed me as CC.  However, I know and my surgeon very much supposed that CC is the devil with me.  The tumor is small so that the scans cannot really show anything definite, but it has gone to my lymph nodes. My only saving grace is that the biopsy of the lymph nodes showed slow growers. I pray that you will find the best help in the treatment of your partner and stay with us here. The emotional help here is second to none.

Byron

-Byron

"Pull down your hat, strap on your spurs, and tighten the cinch. Let's ride this mustang."

Re: An introduction and a thank you

Hello Elsie.....I would like to follow Lainy and Bryon in welcoming you to the club no one wants to belong to.  The sudden onset of symptoms is not uncommon as this cancer is known to move along silently. (It is believed that my husband may have had this cancer for up to two years prior to detection.) . Also, I wanted to mention that popsicles became a staple in our household for sore throat pain.  A possible side effect of chemotherapy called cotton mouth also can cause soreness however; in this case sucking on hard, sour candies provides relief.  Try to stay hopeful and realistic and remember that our members will support you, cheer you, console you and are with you all the way.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: An introduction and a thank you

I've never posted on a forum before, but I'm glad I took the plunge! I'm humbled by your responses and am surprised by how moved I feel. Thank you.

I couldn't find Chloraseptic but bought Difflam throat spray which contains Benzydamine Hydrochloride which has helped a little and some ice blocks (popsicles) which Jim is very happy with, so I think they may become a staple in our house too. Again, thank you.
Elsie

Re: An introduction and a thank you

Elsie....good to hear that it is working for Jim, but you want to make sure to report everything to the phyisician also.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: An introduction and a thank you

Hi Elsie,

Welcome to the site. Sorry that you had to find us all and I'm so sorry to hear about your partner also. But I am glad that you have joined us all here as you will get a ton of support and help from everyone. I can so understand the shock that you are feeling right now, that is normal. I felt the same when my dad was diagnosed. He was well, looked well and was active. Then the jaundice appeared, he had all the tests and over 3 weeks later he was diagnosed with inoperable CC. He was told that his CC was inoperable due to the location of his tumour and it being too close to the portal vein as well.

I know you say that you are not much of a poster, but please feel free to come here as little or as much as you want. We will always all be here for you and can relate so much to how you are feeling and what you are going through. And if you have any questions at all then just ask and we will do what we can to help in answering them.

My best wishes to you and Jim,

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: An introduction and a thank you

Hello again. Jim has now had two cycles of chemo and is scheduled for a scan next week to see if it is having any effect. I am concerned about whether it is a good idea because I can see that his breathing is becoming more laboured and he is slowly getting weaker.  He is experiencing acute pain episodes more often and can no longer walk any distance. I hope that he is not disheartened if the news is not good.

On the bright side - he is hardly experiencing any side effects from the chemo. It was found that his sore throat was caused by thrush so was quite easily treated and I hope that information may help someone else. He does have some mouth ulcers but thankfully no nausea at all so is still enjoying food and a drink!

His sisters are visiting from the Uk and whilst bittersweet it is lovely to see them enjoy their time together. After a 6 week visit they will be going home in about 8 days and I am dreading the farewell although I'll be happy to have Jim back to myself (in between numerous visitors of course!).

I have been so busy lately that coming onto this site has only been occasional, but I am always encouraged by what I read.  It is a relief to write what I feel knowing that someone else understands.
Thank you. Elsie

Re: An introduction and a thank you

Good Morning Elsie from the other side of the World! I am glad to hear Jim is weathering the Chemo well and as to the results we can only second guess until the Scans. This is one of the worst times and we have now become to call it "Scanxiety". I think our Jim Wilde gave us that one! We are great around here for making up words! smile My only suggestion at this point is to talk to the Doctor about the pain. We don't like to hear that word and patient comfort is the first thing on our list. Sending best wishes and prayers for a good news scan.

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: An introduction and a thank you

Dear Elsie,

Your story is very similar to ours. This thing just comes out of the blue and turns your world upside down. I wish you and Jim all the best as you fight this disease. Like you, I searched and searched for information and support and I found my home in this site. Best wishes and bright days ahead.

-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: An introduction and a thank you

Elsie:  Welcome to the site that no one really wants to join.  My husband Tom is in a similiar situation.  He did go through a resection in June '08 and had a (almost) great 18 months then started w/jandice.  He has an inoperable tumor now and is on his third time with chemo.  This time they are giving him 5-FU and he is very tired and weak.  Walking is very hard for him and he has lost a ton of weight.

But on the flip side, in a few days it will be two years since his 'then' oncologist told him he'd have less than 6 months.  We are no longer with that oncologist because he didn't seem to be able to do anything other than to sit at his desk and stare at the computer. 

Tom now has a great team of doctors looking after him.  Although they have told us that they can't 'cure' him, they gave us options which is what we were looking for.  And they would not give him any indication of how long they felt he had left, that is up to God, not doctors.  For which I am grateful because that is what I needed to hear and what I thought all along!

Please come back to this site often, as you will gain a lot of knowledge and also get comfort from knowing that you are not alone with this evil cancer.  We have a lot of caretakers posting on the site, as well as CC patients.  We all learn from one another and we all get moral support as well.  Only the people that are dealing with this cancer really understand what we go through!!!

Your partner is going to have good and bad days, just like my Tom does.  One day he is bright and chipper and the next day he sleeps all day.  However, he has been on the 5-FU chemo for only two weeks and it really seems to be doing a number on him as it seems like he is sleeping more and more and is really tired all the time.  It could just be that the 5-FU is too strong for him as he only weighs in at 112 (He used to be 180) and he is 6ft tall.  (very thin now!)

Take it one day at a time, never accept 'no' for an answer, ask what else can be tried/done.  Make them think outside the box.  Make sure that the docs are familiar with CC.  Take notes and write down your questions or you will surely forget to ask them.  Do all the research you can on CC as the more informed you are, the better questions you can ask!  (I was so well informed that I had a Mayo Clinic doctor ask me if I were a doctor!)

Go with God and KEEP KICKIN' THAT cancer.

Prayers are coming your partner's way from Wisconsin.
Hugs,
Margaret

Re: An introduction and a thank you

Well, we had what we consider a win yesterday when we received the results of Jim's 2 month scan! The oncologist told us he considers the cancer to be in the stable category. The masses in his liver and on his pancreas have only increased marginally, and the ones in his chest have stayed the same size. He does have one new small spot on the tip of his liver, but considering how quickly they were growing prior to him starting on gemcis we think it's fabulous news and it has given us both a huge boost and the impetus to fight on. So he is scheduled for another 2 cycles of chemo and will then have another scan.

Could someone with more knowledge of gemcis than me check my understanding: Am I right in saying, when used in cases like Jim's where the cancer has already spread, gemcis is not a cure but may slow the tumors growth in the hope of providing more time and delaying the inevitable? Does it ever shrink the tumors? Is that unrealistic? The onc was really quite happy with the results and neither Jim nor I wanted to dilute the only positive news we have had since July by asking hard questions yesterday, but now we are wondering....

Pamela - I have read your story and my heart goes out to you and your daughter. I've never experienced anything like this before and it sure takes courage some days. Your courage and love shines through your posts.

Margaret - Hugs from Wisconsin to Sydney! Wow thank you. In fact I do feel the support from this communtiy and everyone whenever I'm on the board. And it is a relief to be able to tap into it.  Have you and Tom been fighting CC for over 3 and a half years? I admire the strength both of you must have and send you hugs back and all my best wishes for Tom.  In a way I am thankful that we were warned Jim could only have a few weeks because it sure made us clean up and organise our life. It also made us determined to live life in four week blocks - to enjoy every month as if it's our last and to see everyone we love more often. I think that worked for us but I know I am thinking further ahead after yesterday because last night I started planning Christmas.

My special thanks to Lainy. I really appreciate your positive and practical advice - not just to me but to all who post. You are brilliant.

Thanks again,
Elsie

13 (edited by marions Sat, 05 Nov 2011 02:01:25)

Re: An introduction and a thank you

Elsie....congratulations; only two cycles of treatment and yet you are already seeing a positive response. Good news indeed. 
The Gem/Cis study is the largest study of the disease of Cholangiocarcinoma and it clearly demonstrated survival advantages without major toxicity issues.  Responses to the treatment vary however; we have seen significant shrinkage of tumors for some of our members.  And, that is what I wish for Jim with the upcoming chemo cycle. 
Although, there is no cure for metastasized Cholangiocarcinoma, the numerous treatment options available have significantly impacted disease progression.   In some instances this cancer has quite successfully been managed similar to that of a chronic disease.  As you see, the glass is still half full.
Like you I believe in making long term plans and your thoughts of enjoying Christmas with Jim is one way of not allowing cancer to stop you from living.
I wish for continued success, good days for both of you and a fantastic scan result coming your way.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: An introduction and a thank you

Dearest Elsie, YIPPEE! We love to hear STABLE. I especially love waking up to this kind of news. Your attitudes are great and planning for Christmas will definitely keep you busy in such a good way. Yikes, I am just getting ready for Thanksgiving! Say, here is a tip for white meat eaters! Don't buy a whole turkey, too much waste and too heavy! I got 2 turkey breasts last year and they were so good I did the same this year. Maybe I will have my Granddaughter make a couple of paper turkey heads and put them on the breasts? It's all OK the kids know they have a cwazy Grandma!
At any rate, this is about you not me, sorry I always digress.
Anyway, if the ONCs are so happy who are we to take that away from them. BUT, I know you will get some responses on this Board about your big question.
Thanks for the great news and sending you a ton of hugs and best wishes.

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: An introduction and a thank you

Hi,
"Am I right in saying, when used in cases like Jim's where the cancer has already spread, gemcis is not a cure but may slow the tumors growth in the hope of providing more time and delaying the inevitable? Does it ever shrink the tumors? Is that unrealistic? The onc was really quite happy with the results and neither Jim nor I wanted to dilute the only positive news we have had since July by asking hard questions yesterday, but now we are wondering....".

Your are right in saying that  Gem/cis is not a cure but may slow the progress of tumor growth.The response rate of Gem/cis in one large study(pt. pop.=204) is 26.1% and median progression-free survival  is about 8 months. in  three other small studies ,the response rate is 37%(30pt.);28%(40 pt) and 35% (29pt.).
and yes, chemo therapy can shrink the tumor(called partial response) and even make it disappeared(call complete response) or no change in tumor size(called stable) and prolong the lives of CCA patients like Jim and me.
But  Gem/cis is not the only chemo for biliary CCA; there are many other options including different chemo agents,radiation like RFA,chemoembro or radioembro and the molecularly-targeted therapy agents. So there are still a lot of fire powers left to deal with CCA if one treatment is not working well to satisfaction.
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: An introduction and a thank you

Hi Elsie,

My husband was on gem/cis/avastin in hopes of keeping his cancer stable to give him more time.  He was diagnosed over three years ago with intrahepatic CC.  He just started on Xeloda this week as his oncologist was concerned with the effects the gem/cis was having on his kidney.  So far, he hasn't had any side effects other than the normal fatique.  John is  a fighter and he makes himself do as much as he can on a daily basis.  I hope your Jim has much success with the gem/cis, but like Percy said, there are other options out there.  Good luck and God bless,  PeggyP

Re: An introduction and a thank you

Elsie:  Yes, Tom was diagnosed with CC in March '08.  In June '08 he had a resection (they took 70% of his liver). In Nov '09 he presented with Jaundice and his then oncologist told him to go home and get his affairs in order - I suggested chemo/radiation and he said it would not do any good.

We did not listen to that and sought 2nd, 3rd, and 4th opinoins.  He has been to Marshfield and to Mayo clinic.  But is doing treatment here in Green Bay.  He had 28 radiation treatments and oral and IV chemo.  We just celebrated the 2 years anniversary from the time the doc gave him 6 months.

He just recently (3 weeks ago) started back on chemo 5-FU and it's really taking a toll on him.  Have I mentioned that I HATE chemo and what it does to my husband?  The 2nd day after chemo is usually the toughest on him which happens to be today (Sunday as he has chemo on Friday)  So today was a really rough day for him.  He's trying to stay positive, cause we have a brand new grandbaby on the way (April 2nd, 2012) and our 12th Wedding Anniversary (Feb. 11, 2012) and we JUST found out that Tom's first born grand daughter is expecting sometime in July 2012.  We are all hoping that he will still be here to be able to meet his very first great grandchild!

He does have one very special grandson.  My daughter Brianne had a premature baby on July 3, 2009 and she named him Thomas (after his Papa) and he is Tom's lil sidekick!  He was only 2 lbs 9 ozs at birth and has come a long way!  He is all boy and is such a lovable little guy.  He love Ama (me) and papa and loves to sit by papa and eat snacks with him.

We have learned to take the good with the bad.  To enjoy the good days and tolerate the bad days.  Luckily we have good health insurance and our deductible and out of pocket are just about met, so until  the end of June 2013 all Tom's medical w/be covered at 100%.  He can go on Medicare Feb. 1st as he will be 65 in Feb (on our anniversary) then we'll start him on Medicare Part B (supplement plan) and PCP plan (drug Plan) when my work policy ends in 2013.  I will take him off my work insurance which will be cheaper for me and between medicare part a and a supplemental plan for part b 100% of his medical costs will be covered after that!  And if that does not work out then I will put him back on my medical the following year.  (see, I'm being optimistic that he will still be here!  Positive thoughts!

Hugs,
Margaret

Re: An introduction and a thank you

Thank you all for the information, it's very helpful. We're moving house tomorrow so it has been a very stressful week and Jim is not coping very well with all the activity. I just don't understand how this cancer works. One day he is quite well and the next he is struggling to get a breath and we need to up his pain medication but it still doesn't totally work. Yesterday was the worse day he has had and he had to ask to lean on me to walk from the lounge to the bedroom. He's watching me pack up and move things and it's breaking him that he can't help. Sorry, I'm feeling down this morning and I just needed to tell someone. I'm hoping that next week when we're in the new house that is single level (yay!) he will feel better.

Like you Margaret, he has a very special grandson and I know that he hopes to be around for the arrival of more grandchildren. Thank you for sharing your story. My heart goes out to everyone who is fighting this horrid disease. I had never realised how hard it is for people because it's not just watching your loved one being ill, it is dealing with all the different medical people, it's trying to cope with all the paperwork and bills and still tring to deal with normal life.

I'm sure things will be better tomorrow. Thanks for listening.
Elsie

Re: An introduction and a thank you

Elsie, who wouldn't be stressed with what you have going on, give Elsie a break as tomorrow will be better. Just a suggestion about helping Jim along and that would be to rent him a walker for his rough days. What a difference it makes and he will be more balanced. It is just there to use if he needs it. May I ask what kind of pain meds he is on and how much his doses are? Remember we are all here for you and if you need to vent, complain or discuss this is the place
as we all have broad shoulders. I hope that after you are settled you will just be able to concentrate on Jim and get some rest here and there. If I was there I would be helping you!

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: An introduction and a thank you

Thanks for being here Lainy. Jim's pain medication is slow release oxycontin 20mg twice a day, plus oxycodone hydrochloride (endone) 5mg for breakthrough pain. Also dexmethsone 4mg 1/2 a tab once a day, Zoton (iansoprazole) 30mg once a day but he can take another if needed, and Karvea (irbesartan) 300mg once a day for blood pressure. Also Flixotide inhaler twice a day and ventolin inhaler to help with his breathing.

Usually the endone works but yesterday it didn't seem to and he needed to take 3 over the course of the day (he can have up to 4 a day I believe). The house we're living in is on the side of a hill and has external and internal steps which really knock him about. The new house will be much easier for him. Frankly, I have no chance of him accepting a walker yet! But I will suggest it. I truely hope it is the stress of the last week that has caused this. As well as the move his sisters went home to England last Monday after a 6 week stay and it was emotional as it is more than likely they'll never see each other again. Money and distance probably wont allow it. This last weeks just been a shocker and we've been surprised because of his good scan results.
thanks again

Re: An introduction and a thank you

Hello All,

I'm Jill  and newly  diagnosed with CC 8 weeks ago.
I live in Qld Australia. I also like Elsie searched the net to find help with this C.  No help from any Drs, in OZ.     Thank god for American sites like this!!

The  left handside of my liver is none exsistent all dried up, the right handside had a blocked bile duct and CC around it & in it. I have a metal stent in and am doing well with it.   Dr said go home and get Palliative care and can't tell me how long I have?? Could be 1 yr some people 5 yrs. Also offered me Palliative  Chemo, Dr said that it really doesn't help with CC.
Not sure about this???? 

I am doing the natural thing, lots of pills & potions from my naturopath no carbs, no dairy and no fats.  I have no more pain in the liver,  lost 13 kilos (which I needed to do) .   The POSITIVE thing in all this is I have gone down 4 sizes in clothes  & its great shopping for clothes.   All my friends say I look healthy and well, so something must be working?  My Dr said my bilirubin which was 485 would not come below 100 as my liver was so bad last reading was 33 and it should be normal this next blood test. I would think its because of the healthy lifestyle I have embarked on.

I am looking forward to reading the posts and learning about CC from you all.

Cheers for now Jill

22 (edited by Lainy Sun, 13 Nov 2011 07:06:48)

Re: An introduction and a thank you

Dear Jill, welcome to our wonderful family of courageous and caring people from all over the world....just like you! I suspect your Doctor is pretty sure of things from what you say. With that said, we do not believe in time frames and you are already proving that! We have had others on our Board who have been told the same thing and some are already 2 and 3 years beyond their predictions. It also seems to be true that only surgery gets rid of the CC. I would say that for you, you are doing all the right things. Our Margaret calls it, "kicking butt". Keep doing whatever you are doing especially if you are keeping it at bay and don't be a stranger here, we expect to get updates from you often.  You are a good example of great attitude and that is the best RX.

P.S.  Jilly, can you post your introduction on a new thread under introductions? This is a longer thread and I surely don't want you getting lost on here.

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: An introduction and a thank you

Dear Jill,

My husband was diagnosed over three years ago with Stage IV intrahepatic CC.  He is on his third regimen of chemo cocktails.  We had hoped to get him in a clinical trial but the last chemo he was on did something to his kidney and the doctor said we needed to get the levels back up before he would qualify.  So, for now, he is taking Xeloda plus Avastin to try to hold things stable.  So, don't give up; try to stay positive because attitude plays a big role in fighting this cancer.   My prayers are with you,  PeggyP

Re: An introduction and a thank you

Hi Elsie:

My prayers are with you and Jim.  My grandmother was diagnosed two weeks ago and is undergoing her second treatment of chemo today, the chemo has wiped her energy completely.

Don't ever loose hope. Fight this battle with him...

-Elsy

In loving memory of my beloved and cherished grandmother who fought until the very end. Loving you forever abuelita...

Re: An introduction and a thank you

Our move to the new house went well and Jim is on the improve thankfully. Any stress or anxiety affects him badly at the moment but it is so hard to avoid it when moving. Thanks again to this board for lifting my spirits when I was down.

Jilly49 - Jill, as Lainy said start a new thread to introduce yourself and more users will read it. The people on this site have helped me enormously. It's not easy getting info on CC in Australia and this site was like a lifeline to me when i needed it. I wouldn't wish this disease on anyone, but it's such a comfort knowing that Jim and I are not alone. Gem/cis chemo seems to be working for Jim but perhaps your situation is different, although I don't understand why your doctor doesn't think it worthwhile to try. However, I do know from experience that it is expensive for us Australians because it's not an approved treatment for CC here yet! It sounds like you are doing well via the natural route and I am a little jealous. Jim wont have a bar of it. We asked his doctors should he watch his diet, should he cut out alcohol and the answer was: Eat what you want; Drink what you want!! So Jim does...... Good luck in you fight, your attitude sounds fantastic. And keep enjoying the shopping.

All the best
Elsie