devoncat
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Me, me, me. Can I come to visit? It will get me out of my nasty dirty flat. How does one flat get so dirty so fast? I think I could knit a whole nuther cat from the hair balls/ dusk bunnies under the furniture. Do you think they are plotting a take over?
I love musicals too. I really got teased in 9th grade when I broke down in class while watching Westside Story.
Try to enjoy all the time with your family. I am sure Teddy is loving it…even the drama queen. Sometimes focusing on some other drama is a refreshing break from your own.
Take care.
KrisMy doctor mentioned brachytherapy once and I brought up photodynamic therapy as well. I am not really the type to take no as an answer so I often bring in abstracts taken from pubmed. Right now, I dont have a tumor in my liver, they are both outside the liver so neither of these two treatments would really work for me. I do know that they do use Radiofrequency ablation here for cc so that is something you might want to bring up as well.
I have had my charts sent to Lund, Stockholm, and Linkoping so if you are not happy with what you are being told, perhaps you could ask for a second opinion. Dr. Farnebo was VERY open to sending my charts different places as was the doctor in Linkoping.
I think half of the battle is getting the doctor on your side and telling him what you want. I have never been told no to a treatment if I had studies to back up why I wanted it. I have been told no because of tumor placement though. There are several studies on cc and photodynamic therapy on pubmed. Print those out before your next appointment and see if that gets you anywhere. You have to remember Sweden is a small country so there isnt that much experience with cc. Plus most patients die before other treatment options really need to be discussed. So while they might not “do” these treatments now, it might be because there was never the opportunity or desire by the patient.
Kris
My doctor is often in contact with Dr. Farnebo and I have made the trip to meet her once. Since cc is such a rare cancer, I am sure your doctor has already been in touch…more likely being in Lund your doctor sees more cc patients than my doctor in little Kalmar so your doctor is most likely more up to date already. From what I remember of my meeting with Dr. Farnebo, she said that her contacts and referrals generally went to Lund so your doctors are likely already very familiar with her.
Good luck in your journey.
KrisLena,
Welcome to the site. Where do you live in Sweden? I live in Kalmar. I am not sure if you know, but Swedens expert on CC is based in Vaxjo…Dr. Farnebo. Sorry, I dont have the Swedish letters on my keyboard so I hope you can understand!I have had wonderful experiences in Linkoping and I find the doctors very aggressive for the most part.
Kris
Met with the doctor again today and got some things clarified. I do NOT have a new tumor, old Leroy just decided to have a massive growth spurt. Radiation is not effective for me. There were no new masses anywhere including my bones which had been a worry.
My bloodwork is much better. Doctor doesnt understand what happened. Never mind, he said my bloodwork is wonderful considering.
I will have a gastroscopy asap to look at why I am having so much heartburn. They think Big Leroy is causing problems. Good news is that I think my favorite surgeon (yes, I do have a favorite) will do the procedure for me. The images will be sent to the big university hospital in Linkoping where I had my failed surgery in Febuary to see if there is anything they can do. That is good news because they are pretty aggressive with me there.
I told the Dr. I have NOT given up and I expect the same from them. He looked startled and said of course they have not given up and hoped he did not give me that impression last time (What impression does he think telling one to go home and enjoy life gives?) His quote “Give us some time to look under the rocks” in the mean time I need to have my kidneys checked to be prepared for a new chemo regime.
My favorite nurse (yes, I have one of those too) commented on my weight loss and even fussed at Hans over it. They went to school together so she has lots of room to fuss. So back to trying to eat more I guess which is really hard when you have so much acid reflux and heartburn. I will be getting those nutrician drinks again…YUM.
That is all the news. Hans and I looked at it as getting the best of the bad news. It could have been so much worse. I am still here, still with 2 tumors (though significantly larger) and organs are functioning pretty much like they should. I can still play and laugh and each day I am here brings me closer to the day when a real treatment or cure for this crappy cancer becomes available. I most likely wont be here for it, but one can hope.
Kris
Where are you in SC? I believe there is someone at Hollings Cancer Center (which I think is part of the medical school in Charleston) that has some experience with cc. There are a couple of drug trials at Duke that may be interesting as well.
Listen to the doctors. Get your fathers things organised THEN forget what they said. Doctors know what should statistically happen, but not what WILL happen. And we all know none of us are statistics!
Kris
All sounds very good. I wish I still had the stomach to drink champagne everyday. It sounds so glamorous. The trip sounds like it was a very special medicine for your mother. Take care.
Kris
I think Hospice would be a great idea to help get your husbands pain under control. It doesnt have to be forever, you can quit if you dont need them anymore. Pain is one thing that drains you emotionally and mentally. Hopefully someone checking on him everyday will be able to get a better handle on dealing with his pain.
Kris
Sounds hopeful. Things are coming down the pipeline. We all just got to hold on for them to get here.
Kris
Welcome to the site. We do our best to support and encourage each other. This is a rare disease and most of us had not heard of it before it touched our lives.
Cant add anything to the discussion. We all believe in several opinions. Doctors know what will likely happen, what will statistically happen, but NOT what WILL happen.
Hang in there.
KrisWelcome Pgtips. I was originally diagnosed in Glasgow. What part of the country are you from? Gavin, a very wonderful member and moderator, is familiar with PDT in Britain. His father had it done I think in Dundee. So it is being used in Britain. He is our current “expert” on the treatment. I am sure he will be around soon to welcome you and answer some questions.
In case you havent found it yet, Britain has its own cholangiocarcinoma charity…AMMF which is run by Helen Morement. It has a facebook and webpage. Perhaps they know more places in the UK where PDT is offered for this type of cancer. IT wouldnt hurt to ask them.
You are in the right place for support and information. We are a tight group that really does our best to help each other.
Kris
The size of the tumor has less to do with surgery than its placement. I had a very small tumor the first time. My surgons were willing to try a second surgery when I had a reoccurance and the tumor was the size of a large orange slice. Unfortuneately when the opened me up, the tumor was in a location that ruled out its removal.
Kris
