Topic: Just joined the group wanted to say hello

Hi all,  now aged 6o was dignosed in February 2008 with cc and the past few months have been sort of mind-blowing. I dont think I have yet come to terms with this dreadful disease and find that I have a lot of time to think about my life ( good and bad ). I am no longer able to work so finances are tight but I can still get around without assistance and still drive. I am trying to remain positive but have the occasional lapse into morbidity. My prognosis was not to brilliant, in Februrary, I was given a year to live. Now 9 months have passed and I still feel ok. II am undergoing chemotherapy with Gemcitabine which has resulted in a size reduction so far. My next CT scan will be in the next 2 weeks and am hoping for a further reduction also. I suppose at the moment I could be considered to be in the early part of my illness and expect things to worsen during the coming months no doubt. At the moment though I dont know what to expect of the future and take things day by day. Thanks for being here, I just needed to talk to someone. John

Re: Just joined the group wanted to say hello

Hey John, don't get discouraged.  I was diagnosed in August 2007 (given 3 weeks to live) and I'm still alive and kicking. 

My tumor was originally 6 cm and with radiation and treatment (gemzar/xeloda) has shrunk over 50%.  I feel fine except for fatigue and am still working and supporting my three kids. I'm a single parent.

There is hope - some people respond very well to treatment, while others don't.  You just never know until you try.  Attitude is very important, too.

Re: Just joined the group wanted to say hello

Hey Lisa thanks for the reply very glad to hear you are well now. I have no idea how large or small my tumour is - perhaps there are certain questions I still need to ask my doctors. Like you say the fatigue is the worst thing I feel I am suffering at the moment - perpetually tired but sleep doesn't come easily sometimes.

Re: Just joined the group wanted to say hello

Hi John...so glad to meet you.  The one thing most of us have learned is that no one is able to predict (with certainty) the life expectancy of someone being touched by CC.  You are 9 months and are still feeling o.k. which to me sounds very promising.  And the fact that you have responded favorably to Gemcitabine is another reason to feel hopeful about your battle with this cancer.  We have people on this board who are with us way beyond the predictions of their physicians so, why not you?  Has a resection been ruled out?  Also, have you had the inclination of contacting other physicians familiar with this disease?  I am a strong believer in 2nd and 3rd opinions especially, when dealing with a cancer such as Cholangiocarcinoma.  Most of all I am happy that you have reached out to this special community where members are welcoming and graciously share their experiences and knowledge in a most selfless way.  Again, happy that you have joined us where none of us wish to be and yet, where none of us would rather be when CC becomes part of our life.
Tons of good wishes coming your way.
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: Just joined the group wanted to say hello

Marion, thank you also for your welcome to the group. I was told at my original diagnosis that the cancer is inoperable so it was palliative care for me only. The chemo seems to be doing its work at the moment will have to wait to see what happens in the coming months. The fact is I feel so well really only the extreme fatigue and breathlessness  taking its toll - no nausea etc.
Thanks for your good wishes and mine to you too.
John

Re: Just joined the group wanted to say hello

John,  Welcome to the club. You will find a lot of help & support here. As others have said, every situation seems to be unique & you seem to be doing well which is promising. Try to keep a postive attitude. Stay strong. Everyone here is here to help & support each other. I am sorry for the situation that brought you here, but glad that you have found the best place to be to help you to deal with it! The best of wishes coming your way.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Just joined the group wanted to say hello

Hi John and welcome to the best little club in the world that no one wants to join! It sounds like you are doing amazingly well. You will find this a great board where you can laugh, cry or vent! We have all done it all. Please keep us posted on you and know you have found the most caring people in the world.

Lisa: we are all so looking forward to a report on your dinner and it just goes to show how much we would all like to meet!!!

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: Just joined the group wanted to say hello

Hi Jonuk.  Like everyone else I would like to welcome you but at the same time say I'm sorry that you have to be here.  I see you are having the same treatment as me and that you seem to be handling it fine.  So I will not write about that but rather information I have discovered that may help with the financial side.  There are 2 social security benefits you should be entitled to.  Assuming you are no longer working you will be entitled to Incapacity Benefit.  There are 3 levels of IB -

Re: Just joined the group wanted to say hello

Hi Ron and Hi to you too Lainy

Thanks for the info Ron,  I do get IB and high rate DLA and have just got a new car through the motability scheme, its now 3 weeks old  lol. Thought I might as well have something from the State for as long as I have got Fortunately I have not lost my sense of humour - long may it remain so !!!!
I must look into the Inland Revenue part haven't done so upto now. DPW didnt mention that at all. Get that under way asap.
Treatment seems to be going along fairly nicely but I have been dropped to a fortnightly cycle for chemo instead of 4 weekly because my platlet count drops to far for the last chemo. Another sCT scan wiwthin the next fortnight so will have to see how we go from there.
Nice to meet you all and thanks for the information.

John

Re: Just joined the group wanted to say hello

Hey John! My huband Lee was diagnosed with this monster in February as well...he was told by some very, very, important Dr.'s at Mayo Clinic Rochester, that there was absolutely nothing they could do for him, the cancer spread to his liver, go home and prepare to not be here within the next month or two.  That was in April.  Today is November 6, he is still with us, the cancer did not spread into his liver, he is undergoing Gemzar and his tumor is shrinking as well.  So, with all of that said, don't lose hope, know that the only one who can say when your last day is Jesus Christ our Lord, and know that lots of prayers, smiles and hugs are coming right your way!

Heather

Re: Just joined the group wanted to say hello

Hi John

Good to see that you are in good spirits.  I have the same problem with my platelets and generally now have 2 on and 1 off for my chemo.

Just in case there is some confusion, it is not the Inland Revenue you would ask about the pension funds it is your own insurance company.  This assumes that you have made  your own private pension arrangements.
Same for the life assurance payouts.

All the best

Ron

Re: Just joined the group wanted to say hello

Thanks Ron
WE must have been on a different tack - will check with my pension companies -- although one said that as I am still able to do somesort of work ( heaven knows what ) I am not eligible for medical erm  retirement . They take your money but dont want to give it back typical of insurance companies I've found - dont have much to do with them if I can avoid them.

cheers
John

Re: Just joined the group wanted to say hello

John

The insurance company should only be interested if you are able to do the same or very similar work compared with prior to your illness.  Assuming you cannot then they should accept your claim.  You may have to have a quiet word with your GP and oncologist so that they are aware of your own wishes and what is at stake financially.

Good luck

Ron

Re: Just joined the group wanted to say hello

John,
I cant remember the name of the poster, but someone is Scotland (help me Ron) had light therapy and it seemed to be working. Perhaps you could get a second opinion and try that treatment.

Again, welcome to cholangiocarcinoma central...home of all things cc related. smile Sorry you had to be here, but we are really a great group-dull of support and information.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Just joined the group wanted to say hello

Hi and welcome John,  I think everyone said it all.  I was Stationed at Raf Lakenheath for for years.  Have stopped in Mildenhall many times.  Nice little pub on the right not far from the roundabout coming from Lakenheath.  Also a Bed and Breakfast on the right across from air terminal.  Can't remember names.  Probally to many pints of Dark Brown.  Wish you all the best mate in battling this disease.  Positive mind and lots of hope.
Cheers!
Jeff

Take it to the Limit,One More Time! (Eagles)

Re: Just joined the group wanted to say hello

Kris and John

The posts were from Gavin and it was his father who was having the treatment.  Haven't seen any posts from him for a while.

Ron

17 (edited by JeffG Fri, 07 Nov 2008 18:25:06)

Re: Just joined the group wanted to say hello

Hi Kris and John... Yes It was Gavin from Scotland-Dundee.  Last post I remember is father tryied going out in the sunlight with his gloves off and started to get red skin, so they were diappointed that he had to wait longer before going outside.  If you Google" Gavin" above and click in one of his entries there is an e-mail link through Cholangiocarcinoma if you would like to try contacting.  It looks like Octber ist was last entry.  Or type in Gavin in the search forum and open one of his post.
Jeff
P.S.   Sorrry Gavin's e-mail was there a couple hours ago.  It must have been removed for privacy reasons.  I surely hope all is well with his father.
Jeff

Take it to the Limit,One More Time! (Eagles)