Topic: New user from uk

Hi, I'm adam, I was diagnosed with cc in march 2012, operated on (partial hep) and been undergoing chemo with cis and gem since April. I've joined to try and get some support and information, and of course to give when I can smile

Adam

Re: New user from uk

Hi Adam and welcometo our extraordinary family but sorry you had to join us. Congratulations on already being a CC survivor and hope you are doing well. Don't be a stranger now that you have joined everyone's input is so valuable and we love to hear from our 'peeps' (people). Tell us a little about Adam and where in the UK are you from? Looking forward to hearing good news from 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: New user from uk

Adam...welcome to our site.  Congratulations on a successful surgery.  How are you feeling now?  How are you tolerating the treatment?  Do you know why the physician had recommended adjuvant therapy? Did you have clear margins? 
I hope that I don't come across as too nosy because; most of all I am thrilled that you have found us and am looking forward to many discussions.
Hugs,
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: New user from uk

Hi Adam,

Welcome to the site. Sorry that you had to find us all but I am glad that you've joined in with us all here. And for sure, you will get a ton of support and information from everyone here and we look forward to hearing from you more as well! So, pull up a chair, get the kettle going and get a brew on!!

I'm from the UK too, up here in Dundee in Scotland and I came here back in 2008 after my dad was diagnosed. It was the best thing that I could have done as I got tons of support and help from everyone and I am certain that you will get the same as well. We have members here from all over the world, many as well from the UK and I am sure that many of them will be along soon to welcome you here as well.

Hows the chemo going for you? And where abouts in the UK did you get your surgery done? I know that you'll have questions, so please feel free to ask away and we'll do what we can to help in answering them. We don't promise to have all the answers, but we'll do our best and we do know what you are going through. I hope that you will keep coming back here and I look forward to hearing more from you.

Best wishes,

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.

5 (edited by adamc1969 Tue, 04 Sep 2012 16:45:48)

Re: New user from uk

Hi all,

What a nice welcome! Thank you smile

Ok, so a little more about me and my recent 'adventure'.

Last year I suffered what I thought was appendicitis and went to hospital in January, expecting to have minor surgery as an emergency, after having spent half the night there they sent me away saying I have "in definable pain" and left me to the care of my gp, who said I most likely had chronic appendicitis. I accepted this and carried on, in pain, until I married my new wife this year in January and we subsequently set ourselves up in a new how in a small Kent village called Wye (it's VERY beautiful!). So one of the things you finally do when moving home is register with a new doctor, who upon hearing the above promptly sent me for an ultrasound scan which showed a 4-5cm space occupying lesion within my liver. As my employer pays for Bupa, I immediately went private and after less than 4 weeks of scans (every variety) I was sent to kings college hospital in London to see mr Parthia Srinivasan, apparently one of the top London liver surgeons. He very quickly and frankly told me I have cancer and that if the tumour is not removed my chances of surviving to the end of the year were about 20%. This was a serious shock as the previous consultant had been telling me the 'tumour' is a type of blood blister! So, a week later I was back in kings college hospital, met the surgical team and they explained the procedure they were going to do, which changed at the last moment as they had just received the pet scan, but they didn't tell me what had changed. I went into surgery, came back out some eight hours later minus the tumour, the central part of my liver and my gall bladder but with a massive cut from my sternum to just above belly button, cross sectioned by another cut going from my right hip to in line with my left nipple. I woke up in recovery and was in zero pain, I started chatting to a guy next to me who was older than me but had had far more aggressive surgery.
Later on the ward my epidural stopped numbing my wound and instead made my right leg numb, I could not get this through to the staff, they kept saying the epidural was working, yet I was in the most pain I have ever experienced in my life, this got sorted some 20 hours later by a junior doctor who believed me and got the anaesthetist to sort things but the epidural had to come out.
I left hospital after 5 days and was very glad to be home, not realising the burden of care I had put on my wife as I could not dress myself properly or even get out of bed. We both went through some hard months together in our first year of marriage an this continues.
I am nearing the end of my adjuvant chemotherapy, which my oncologist swears there is good data to support it especially with the "significant reccurrence risk". The histology report showed that although the surgeon thought my gall bladder was also affected, it was clear, as we're the surgical margins and my lymph nodes, so all good on that front really.
My biggest problem now is that I am still in a lot of post operative pain and I really didn't expect to be by this time, I have noticed that the muscles on the right side of my abdomen don't seem to work at all and I have numbness in this area also, plus, most worryingly, a sharp stabbing pain in the exact same position I went to the doctor for in the first place, my oncologist has refused to scan me until the chemo is finished in 6 weeks time so I guess I just have to wait.
The chemotherapy has been pretty hard but varies every time, it's definitely not something I would recommend to anyone unless they had to do it, I personally dread it.
Anyway, I'm 43, and plan to stick around for a bit, I want to run in the 2014 Brighton marathon and have a child with my new wife (if the chemo hasn't destroyed that chance!!). I've been scouring the net looking for up to date data with a view to understanding my prognosis, my surgeon told me in march that I had a 33% chance of living 5 years but from what I can tell this seems to be based on outdated data, at least I hope so as those odds aren't great! This site looks like a great resource and a wealth of experience which I hope to be able to contribute to.

I've rambled enough I think

Adam

Re: New user from uk

WOW, Adam I am out of breath for all that you have gone through. I am not happy that you are having this pain and don't understand why they would make you wait another 6 weeks to delve in to it! Pain control is so important as it zaps your energy for healing! I love your positive attitude and that will get you far. Keep wishing for things and goals you want to achieve and you will. Adam we really don't listen to statistics as you are right, they are outdated.  Also CC is so different with each patient but we do know that new things are popping up all the time now and we are really getting noticed! We do try to remain realistically optimistic. Congratulations on your new bride, your new home and some day a new baby. Everything new is good! Please do keep us posted as 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: New user from uk

Thanks Lainy, I certainly will keep you all updated, it's good to be able to talk to people who really understand the situation at last!

Thanks again.

Adam

Re: New user from uk

hi adam--
WOW. thanks for the detailed description of your history! Others can weigh in more authoritatively, but from what I've read, the fact that your margins are clean and you have no nodes is the best possible surgical outcome. yes, the recurrence stats aren't great--but you're not a statistic!!! my husband, after surgery,  had "close margins" which essentially means they were positive, plus positive distant lymph notes...but we're happy he was among the 10% that couldn have surgery, and we're just praying for a miracle. he's on gemzar and xyloda plus radiation.

keep us posted!!!
betzeegirl (wife of CC patient)

Re: New user from uk

Hi Adam,
I am so happy that you could have surgery. I pray for a good next scan for you so that you can enjoy life with your new wife. I have had two resections and I still get that numb feeling on the incision line. Your wife must be an angel, it is a labor of love taking care of a cc patient after a resection. Nice to meet you, sorry it has to be here.
Lisa

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: New user from uk

Hi Adam,

It's nice to meet you and hear your story.  I am very similar to you.  I had intrahepatic CC, diagnosed in March 2011.  I had a left hepatectomy with gall bladder removal.  Clean margins and negative lymph nodes. I had 3 cycles of adjuvant gem/cis, 6 wks of chemo radiation with xeloda and 3 more cycles of gem/cis.  This all finished in February.  My next scan is in October.  My last scan was in June and was clean.  I am 32.  I have some numbness around my incision, I was told this can be expected by my surgeon.
Keep us posted on how you are doing! 

Take care,

Susie

Re: New user from uk

Thanks everyone, this really is a great forum, it's comforting to know that others have had similar experiences. I wish you all and your loved ones well.
The whole experience completely blind sided me and took me til just 2 weeks ago before I decided I am going to live, I had kind of resigned myself to death, ok, I still accept death, we all have to at some point for whatever reason but I now have plans that I'm praying God will let me see through.
Susie that sounds like a grueling chemo regime, I hate chemo and the way it affects me, did you suffer any cognitive impairment? I've had days after chemo when I couldn't even hold a conversation, I hate that.
Lisa, yes my wife is an absolute angel, she has suffered as much if not more than me, I find this probably the hardest thing to deal with (closely followed tbh by the financial strains!!)

Thanks again all


Adam

Re: New user from uk

Hi Adam,

I just wanted to welcome you to this site along with everyone else. I wish you and your wife all the best. Congratulations on being able to have a resection. That is a major hurdle. My daughter, Lauren is the one with cancer. She is only 26. I pray one day she will be able to have a resection as well. This site has the most helpful and wonderful people on it. I feel so lucky to have found it and I really don't know what I would do without it. I hope you continue to post on here. You are among friends.

-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: New user from uk

Thanks Pam, my prayers go out to you and your daughter Lauren. Despite my situation I feel lucky that I've got this far.


Adam x

Re: New user from uk

Adam,
I just had my 1 year scan, everything clean! I only had a 1cm tumor on the bile duct, clean margins everywhere, so I was one of the lucky ones and feel blessed to be so.  I also did adjuvant Gem/Cis for 3 months, and radiation for 5 weeks as well.  No good data on whether or not it will help, but being 41 I said what the heck, didn't want any regrets 5 years down the road. You're in the same boat being a few years younger.  Wish you the best, this site is a great wealth of information and support so keep visiting!!

Derin

Husband to Eileen, Dad to Hunter (16) and Sydney (14)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: New user from uk

Hello Adam
My name is Sandie and I am here in the UK.  Your story sounds extremely similar to mine and if you ever wish to speak to me please le me know.   I too thought there wa no hope and had accepted my end, but  I have now completed chemo and Radio and have since had 3 clear scans.  I still have side effects from the chemo and sometimes have bad days, but every day I laugh and make sure I have something to look forward to, being positive is so helpful.  Your wife sounds like an angel and you two will have wonderful times together.  Take care xx

.... because I can ....

Re: New user from uk

Thanks Sandie, that's really appreciated. I struggle every day with constant pain and restricted movement due to the surgery which gets me down a lot, I used to be a very active guy, running cycling and kayaking, this year I've only managed to cycle 6km and can't yet run due to the pain, if anyone has any any experience of good pain management I would appreciate any tips, my gp is not great, gave me amiltryptiline (spelling??) but it made me feel strange so I'm back in pain and not taking them.

Adam

Re: New user from uk

Adam, may I ask you a question since I am not sure how your "Medical" works in the UK? Do you see an Oncologist and if so why can he not prescribe for pain you are having from CC?

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: New user from uk

Hi Adam,

Could you not go and see another GP at your practice? You say your GP is not great so maybe time to go see a different one. Or, could you not get in touch with your Onc or their team and tell him/her that the med your GP gave you isn't working at al for you. There are a load of differnt types of meds that can be given for pain and if one type is not working then it is time to try another one. And that goes as well for a gp that is not working either!

Is this the med that you are on?

http://www.netdoctor.co.uk/depression/m … yline.html

Here's a Macmillin link about Pain and there are loads of other bits of pain info in it as well. I hope that it is of use to you.

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

I hope that you can get some help with this, preferably as soon as possible.

Best wishes,

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: New user from uk

Hi Gavin,

Yes I think it's time to speak to a different gp or my onc team, I'm mostly surprised that 6 months after surgery I still have pain that I associate with the surgery, I feel like I'm 'zipped up' too tight plus my abdo muscles on my right side just don't work and hurt a lot. I've dealt with pain before (I've had 2 fingers amputated in an industrial accident) but this just doesn't seem to be getting better. As I said before, I was very active before this and I hate the way I am now, just hope it won't stay this way as I'm desperate to get active again.
Lol, I'm bleating on now!! Sorry smile

Adam

Re: New user from uk

Hi Adam,

No apologies are ever needed here for bleating on!! Neither are they ever needed for ranting, shouting, screaming or just having a good old moan of thats what soemone wants to do!! So if you want to have a good bleat then you go right ahead and do so!!!!!

My dad never had surgery of any type, so I can't share any personal experiences or anything like that. But loads of members here have had surgeries and hopefully they will be able to offer some personal advice to you about this. Was it March that you had your surgery done? So it's 6 months on now from then, so, maybe you could get in touch with the team at Kings as well who did your surgery and see what they think about your pain? I dunno really, but 6 months after the surgery I would have thought that your pain would have been easing off a lot? Hopefully others will have some thoughts on that as well.

I can understand your frustrations about being less active right now and wanting to get more active again. My dad was the same albeit not as active as you were, but it frustrated him as well when he wasn't able to do as much as he used to. But don't give up hope, keep on keeping on. Stay positive and think about that Brighton marathon in 2014!

Best wishes,

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: New user from uk

Adam, I so agree with Gavin. PLEASE see another GP or your Oncoloigist, you should not have this kind of pain and it prevents your system from healing because you are using so much good energy to fight the pain.

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: New user from uk

Hello again Adam
I too had a lot of pain post surgey and I found taking a strong sleeping tablet at night helped as my body could relax and concentrate on the healing process.  The scar tissue still causes me pain and I have nothing like the mobility in my arms and legs as i had before.  I have been told that this is probably due to nerve damage.  I too would recommend you seek another opinion and also speak to your oncologist.  Keep smiling and try to laugh every day.  Take care xx
Sandie

.... because I can ....

Re: New user from uk

Thanks guys, I think it's helpful even just venting this a little, I really appreciate it. Think I better start a new thread in the right area of the forum and see what people say.

Thanks again

Adam