peter
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I have never had a PET scan but have used both CAT and MRI’s. In my case neither of the scans has shown anything definitive as I do not have any solid tumors . The radiologists do seem to have discerned slightly different information for each however which combined was either reassuring or raised some questions.
My laymans view is that using a different imaging tool to compare with the MRI’s you already have may be helpful. You can always repeat an MRI later.
-Peter
G,
Thanks for your reply.
Do you also follow any tumor markers? CA19-9, 125, or even CEA?
If so I’m curious if they also signaled a change and if they have stabilized after going back on the chemo.
-PeterSara,
An encouraging read, thank you for posting.I was particularly struck by the quote from the FDA expressing their interest juxtaposed with the earlier reference to scientists needing to isolate one data variable for their research. (and perhaps also so the drug companies can synthesize it?)
I believe we need a paradigm shift for research into herbal therapies to take the place it deserves in our fight against this disease.
Pubmed
http://www.ncbi.nlm.nih.gov/sites/entrez?amp=&=&db=pubmed&cmd=search
contains papers on a number of herbal/immunotherapy/etc trials conducted in other countries that show encouraging results. These are often rejected in the US as they do not isolate one data point to measure for the success of the trial. Other cultures are able to focus on what will help the patient and in my opinion it is time for us in this country (US) to broaden our focus.
Pure science has a key role in both our learning as well as our development of treatments. My point is not to discount this but rather to compliment it by pursuing other avenues as well with the enormous resources available in this country.
My two cents.
-Peter
Cythia,
Kris is absolutely correct in what she says. A second, or third and forth, opinion is crucial. Use the search function at the top of this page for ‘second opinion’.
Best wishes to your Mom and family,
PeterFran,
I had a klatskins as have others on this site. It is a rare tumor in a rare cancer but in some cases it CAN be removed by a skilled surgeon with experience with CC and klatskins.
Please get a second or third opinion! Surgery is the best hope for increased longevity and quality of life and it is too often the case that Dr’s and medical centers with little experience with CC don’t realize what is possible for some cases.
I’ve written many posts over the last 4 years on the importance of second opinions for surgeons with experience. If you use the search function on top of this page for ‘second opinion’ you’ll find some encouragement and suggestions. You can search on my posts as well.
Note that you can often make phone calls and send imaging results plus radiology reports with out needing to travel until a medical center feels they may be able to help and wants to see you. Klatskins are slow growing, that at least is in your favor.
Best wishes for a successful search. Let us know if we can help and keep us posted.
-PeterChris,
I’m just returned from a short vacation but want to reiterate Marion’s offer of help. Dr Jenkins was wonderful for me. He did a Klatskins resection when the tumor had spread to include part of my portal vein. That was over 4 years ago. You can find detailed posts under my name in the experiences section.
Dr Jenkins has looked at other patients imaging and reports in the past and let them know if he felt it was worth their coming to Lahey for an apt. I don’t think he will be in the office next week. Julie, his assistant, will be able to guide you.Let us know if we can be of specific help.
-Peter
Marley,
I wonder if this is the trial you are refering to:http://www.pro-pharmaceuticals.com/press/pr-04-04-07.pdf
5FU has been used for a number of years against CC, I hope (we always hope), will come up with a breakthrough.
-PeterI too have had the great good fortune of having a team of good doctors who have helped me along the way. It isn’t all luck. I searched out Doctors who were willing to work with me and my goals. I now have a PC, a Chinese medicine practitioner, a GI/liver doc, an oncologist and of course the surgeon who gave me the time I now have. Wonderful human beings as well as good Doctors. These people talk to me and are willing to consider my opinions and questions, answer my phone calls and emails (I try to be very conscious not to abuse this) and have provided sound medical advice.
Can’t ask for more.I agree that this is a perfect ‘good news’ thread.
-Peter
Well said Sara.
It’s good to note that this website has already made a difference. I think I’m correct that we’ve had over 300 participants (rick ??) not to mention the ripple to families, friends and care givers. It’s now a resource for people newly diagnosed that simply was not available anywhere a few years ago. The foundation is growing from this seed.
Thank you Stacie, Rick and all of Mark’s family.-Peter
Strikes me as unusual as I don’t recall hearing this before. It was not the case for me.
Did your resection include a Roux-en-Y to create a new bile duct directly to the intestine. A naive laymans view is that the color means that for some reason the bile is not getting to your intestine.You didn’t mention what you’re liver panel looks like but those numbers may provide a clue. I’ve found a GI/liver specialist to be a big help, with often different opinions from the Onc or surgeon, in some areas.
I think you’re wise to be asking the question and would not let it drop.
-Peter
Welcome to the club no one wants to belong to. I’m sorry your Mom and family needed to find this site but I’m pleased you’re here for the information and support that’s available.
We each respond differently to both treatment and living with the disease so I don’t feel qualified to offer what path your mothers CC may take. Reading the threads and others experiences will give you a good feel for what we all know at this point in time. One thing in our favor is that CC is almost always a slow growing cancer. This can allow some time for thoughtful decisions. There are a number of threads on peoples decisions to use, or not use, various treatments including chemo.Having said this I must add my oft repeated suggestion/plea that people always get a second opion regarding resection of the tumor. Use the search tool at the top of this page and enter ‘second opinion’. You should get a number of hits. In summary, find a cancer center(s) and surgon with experience with CC. Contact them by phone and send radiology reports and all imaging that you have to them for consideration. It shouldn’t be necessary to make long trips as the first step. Get the reports and imaging and send them yourself. This is usually much quicker then having the institution forward the records.
Best wishes and prayers for your Mom and family.-Peter
Marion,
Well considered advice but how many people who do not have CC in their families even know what it is much less would consider screening for it.
The CC foundation formed by the founders of this website offers our best hope of educating both the public and espeically the medical community so that detection, treatment, and eventually the cure we all dream of can become reality.
I offer this as unabashed encouragement for all of us here to become aware of the foundations work and potential. These folks are all volunteers.
-PeterI use a decision making technique taught to me by a friend as I face many of these difficult decisions that do not have clear answers. He dubs the technique his ‘least regrets’ process. It’s easier said then done.
Simply put you do your best to force your mind to follow possible paths in your life that may be created by a particular decision. Then, even harder, try to imagine how you might feel given the possible outcome for a particular course a path may take.ie: If I choose to take chemo:
One question is how it may effect my quality of life. If the chemo seems to work and you do well on it that path and ‘least regrets’ option is easy.
If you don’t do chemo and continue cancer free that one is REALLY easy.
What if the chemo works but you experience difficult side effects. Would you regret doing it?
What if the chemo doesn’t work and you experience difficult side effects. Would you regret doing it?
What if you don’t try the chemo and cancer returns in force. Would you regret not doing it?
etc……….As I said it is difficult, at least for me, to get my mind to stay with following the different courses through and then trying to imagine how I would feel.
And you can’t expect a black or white answer to come to you. This just isn’t the nature of what we face. I have found the process useful enough for me that I continue to use it, but never look forward to it.-Peter
