marions
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Dear Kimcountry,
So sorry to hear about your friend, but am happy for you to have found us.
I believe in gathering as much knowledge as possible, and this site will be a valuable tool in the quest for information, evaluating such and making informed decisions due to the vast knowlege others have accquired while encountering this disease.
Of course, you might want to encourage your friends to collect all medical records, physician diagnoses, scans, blood test results, etc. in order to approach those medical institutions and physicians, who have been treating a higher volume of CC patients for second, third or even more opinions.
When entering key words in the “search” function on this site, you will find that many questions you might have, others have already addressed. Reading through the posts is time consuming, but may proof itself to be highly informative.
Don’t hold back from asking questions, may it be in the quest for navigating this site or anything else coming to your mind.
Wishing for the absolute best for your friend
MarionsOne of the problems lays with the clinical studies required by the FDA. It is difficult not only for the patients meeting the criteria, but also for the exhuberant amount of money it requires to conduct these studies.
There is plenty of research in academia. However, the amount of money required to then follow up the research with these clinical studies, in most instances, is simply not available. Mainly, pharmaceutical companies are the ones conducting studies however, in order to recoup their investments, a drug will have to be produced and patented in order to allow for a financial return.
There are some interesting things happening with drugs. In many instances, a drug may have lost it’s right to a patent. Therefore, one or more compounds may be added to the very same drug – more clinical studies follow – and voila, you now have a brand new drug with another right to a patent.
Certainly, if the FDA could amend their restrictions by allowing alternative medicine to be bound by less rigorous requirements in order to gain approval for their application, then of course, we could possibly see physicians treating more patients with herbs and – or recommending alternative treatment protocols.Hoping for changes to come about.
MarionsTam,
so sorry to hear about your uncle.
I believe, anytime is a good time to request second opinions, may it be for occurence or recurrence. You will find many such names of institutions or physicians on this site.
Also, if you need help navigating this site please, don’t be afraid to ask.
Wishing the absolute best for your uncle.
Marions
Sara,
Happy for you having started the Dendritic Cell Therapy. Wishing for success all the way.
Marions
Tom,
Although, my husband ultimately chose a different location for his resection he had been accepted for surgery by Dr. Fong at Sloan Kettering. Dr. Fong is highly regarded by his peers and is known to be an outstanding physician.In 2006 Dr. Fong did not make himself available for second opinions, something you might want to consider when contacting Sloan Kettering. I suppose, it lays in the wording when making the initial contact by asking for an appointment all the while avoiding the request for a “second opinion”.
Wishing for the best.
MarionsHello Chris,
Good luck tomorrow with your appointment.
In re: to another surgical opinion – it certainly will never hurt and can only help – when gathering as much information as possible. Peter and I have posted in re: Dr. Jenkins. Let us know if you need any help with making contact with him.Best wishes
MarionHello Caroline, Jeff and Evan, Anna and Bill,
As always, it is inspring to be reading your posts and especially when the news is as good as today.
Love to all and wishing for continued success with your treatments.
MarionsDearRobynhar,
have you tried the search function on top of the page by entering Tarceva?
I believe there were several discDear Nancy,
Congratulations in many ways. First and foremost, your friend had been offered a resection and that being attributed to your persistancy of seeking further opinions in the medical community.
Hoping for continued success.
MarionsDear Kim
Good news doesn’t come much better then that, and thank you for sharing it with us.
I am hoping and wishing for continued success with the transplant. Try to keep up posted as we would love to accompany you and John along the way.
Marions
Dear Sandy,
There is no known cure other then the potential of curative treatment through surgical resection. We, the ones having been touched by CC, are not going away until this cancer is brought to the forefront of modern medicine and, as you said, our voices are heard.
Hoping and wishing the very best for all.
MarionsDear Sandy,
I understand your worries and my heart goes out to you.
While we were researching this disease and consulting with what I call
Hello Val,
Welcome. We are glad for you to have found us and so sorry to hear about your husband.
Having the stent removed is especially encouraging to hear. Presently, this cancer is not considered curable without a resection leading to a possibility of a cure however; many people have experienced long term success with the various treatments offered.
There are some fantastic people on this site with a wealth of information to share with you. I believe in collecting as much information as possible in re: to this cancer in order to make informed decisions in the battle with this disease.
My husband also was troubled by exhaustion due to the chemotherapy. Steroids helped him overcome the fatigue although, sometimes it worked better then other times.
Hoping for everything to continue to go well for your husband.
Marions
Dear Jules,
What a wonderful tribute to your Dad, someone I have admired so deeply.
I can now envision him on his yacht, the wind blowing his face and his laughter carrying in the breeze.Thank you for presenting to us this wonderful memory of your Dad. He will never be forgotten.
Hugs
Marion
