mlodge
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I had a met appear on my pelvic bone. The hospital did a bone scan and found no other tumours than that one.
Mel
Hi Kris,
I hope all is much better now. Sorry to hear about the breakdown. I tend to get mine when I am riding the subway! No idea why, I just start to tear up. Love the anti-funeral. Here I have been thinking of having a living funeral if for friends and family if things don’t go my way. Some people just don’t understand that we have to joke around about these things
By the way – kudos to you for learning a new language during this difficult time. Just thinking about it makes me cringe.
All the best,
MelThank you Wendy and Ashley!
I am still trying to come up with a name for my tumour. It is difficult to name something you want to die. Hmm – I hate lima beans – maybe I’ll call it Lima – LOL!
Hi Darla,
Thank you for the encouragement! Once I am finished with the treatments I will go get my tattoo!
Mel
Hi Donna,
I have an ERCP and a PTC which drains into an external bag.The ERCP came first, but didn’t do much so they added the PTC drain. Both are plastic. The first 2 months after receiving the PTC drain was very uncomfortable and I also ended up with a blood infection (can’t say for certain if this was from the PTC). I have had both stents in for 7months.
There were a few times when I found a little bit of blood in the bag, but it was only like a teaspoon – that hasn’t happened in a long while.
Also for the first month, the site where the tube comes out seemed to always be moist with bile. I or the nurse would have to change the dressing frequently.
As for bilirubin levels – mine are all over the board – they go from 45 – 88. I am in Canada so I am not sure if they use the same measurements in the US for this.
I have decided to start eating Oat Bran for breakfast every morning – it apparently helps with the elimination of bile in your liver.
Hope this helps – all the best,
MelHi Kris,
Good to know about Bevacizumab. They haven’t tested for K-RAS. There is another clinical trial being done in Denmark where the inclusion criteria is for K-RAS mutation. I will be checking into this if Proton Beam and Cyberknife don’t work.
For the proton beam trial, I do have to be free from chemo and radiation for 1month.
I hope Leroy isn’t causing you to much discomfort. I need to think of a name for mine
My biggest plan is to downstage my cancer, have my resection, and then go get a tattoo of a yellow ribbon on my liver area:) I don’t have any tattoo’s and thought this would be a cool one!!Mel
Hi Kris,
I was doing some cyberknife research and found that Canada has just installed it’s first cyberknife in Montreal, Quebec on the 16Sep!! So if the proton beam therapy falls through, I can always try the cyberknife angle.
Thanks for the nudge,
MelHi Kris,
The doctor said I won’t qualify for a resection until my staging drops down from IV to III. I hope this will happen soon!! But I know I have a long fight ahead of me.
As for the cyberknife – I haven’t even looked at the information yet – I just figured I wasn’t there yet and didn’t want to overload myself with information. There is just so much to know.
If you are interested – I found the trial on the clinical trials website – search with Cholangiocarcinoma AND Proton.
My radiation oncologist explained that it is only a phase 1 trial – so it is basically a theory one of the doctor’s is trying to show has merit. My doctor advised me that the drug they are using in combination with the Proton Beam Therapy theoritecally makes sense, and that she would never be able to give me radiation dosage as high with the standard method of radiation. The biggest advantage of proton beam is that the beam’s width and depth can be controlled – so less harm to surrounding tissue and organ’s.
Dana Farber in Massachusett’s is currently doing a phase II trial on proton beam therapy, but they aren’t using the drug Bevacizumab. Bevacizumab blocks the growth of blood cells in tumours.
I believe Sloan-Kettering in NYC also uses proton beam therapy for our cancer.
Anyhow, I have nothing to lose. I might as well hit it hard while I still have the strength and energy!
Thank you for the support,
MelHi Kris,
Reading your post made me feel like I had a twin in Sweden. I am always making jokes with the doctors and nurses at the hospital.
Two weeks ago I complained to my doctor that the radiation treatment they did on my rogue tumour on the pelvic bone did not cause the side-effect they had promised!!! The side effect I was most excited about was losing all my pubic hair without having to go through the agony of waxing! So I asked her to tell the radiation oncologist to stop making promises she couldn’t keep. Anyway, my doctor just looked at me and told me to stop making her laugh!!
During the same meeting with her, I looked her square in the eyes and told I was going to be the patient that will beat her odds.
As long as there is always a clinical trial for me to try I will never stop hoping.
My biggest fears is running out of trials, and dying without providing valuable medical information to help the cause.
All the best Kris! and keep on laughing!
MelHi Viola,
My oncologist is prescribing me 1650mg of Gemcitabine and 42mg of Cisplatin. I receive these for 2 weeks and then 1 week off. From what I understand they take the patients weight is taken into consideration for the dosing. I am 135lbs.
All the best,
MelHi Ed,
My only comment is – shame on your doctor for giving you an expiry date. There was a study done at some point on this, and they found that when doctors give the patient an estimated time of death – the patient is more likely to fulfill that expectation than to try to fight it. I don’t recall the numbers unfortunately. But I do recall that they were significant.
I am 37yrs old with stage IV intrahepatic cholangiocarcinoma. When I was first diagnosed I really didn’t know if I truly wanted to go through the fight or not. One day I realized if I didn’t go for treatment it meant I wasn’t giving it my all. And that is so not me!! Though my life has been completely turned upside down and it seems to be all about my cancer I cannot allow the statistics of this cancer determine my outcome. Remember, doctor’s base much of their knowledge on statistics, education, and observations. My thought is – they have not had an opportunity to observe ME yet. They have absolutely no idea how my body and mental health will take to treatment.
I know we all must make difficult decisions, and I am not trying to change your mind about the decision you have made – I just wanted to give you another way of looking at this.
I wish you and your family all the courage during this time,
Melanie
