marions
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Thank you Shannon and Wes,
I have been following your Mom’s blog from the beginning and was hoping and wishing for her recovery. Now, when looking at the sky, another star is blinking at us. Hoping for your heart to begin healing…one day at a time..
MarionsMichelle,
Hoping for the infection to be subsiding and your Mom to be regaining her spirits.
Wishing for the absolute best coming your way.
MarionsHello Deanna,
Thank you for joining this site and sharing your wonderful story as it conveys hope and encouragement to all.
My best to you and Sunny.
MarionsPatti,
There are physicians willing to look at your reports without it involving any cost to you. Dr. Jenkins, at the Lahey Clinic, is one of them and I would think that others had encountered similar experiences with other specialists in this field. I assume you have had a triphasic scan. That and all reports plus lab results (including biopsy) should be sufficient to forward for another opinion.
The best of luck.
MarionsHello Patti,
My initial response would be to gather the CT Scans, lab results, anything and everything pertaining to the diagnoses and to forward those to other liver cancer specialists for a second, third, or even a fourth opinion. Using theHello and welcome, Kimp
So sorry for you having lost your Mom 12 years ago and so grateful for you sharing your experience with us.
This is what I have learned so far. There are still many unanswered questions in re: to CC. Heredity, predisposition, and a autoimmune disorder have been addressed in the past although, as far I know, none of it has conclusively been linked linked to the occurrence of CC. Some associated risks seem to include primary sclerosing cholangitis (an inflammatory disease of the bile ducts), congenital liver malformations, infections with the parasitic liver flukes and exposure to Thorotrast (thorium dioxide), a chemical which had previously been used in medical imaging. Also, I have been reading about a possible connection with chronic interductal gall stones and CC.
Hopefully, the research for this cancer will increase thus bringing us closer to a conclusive risk factor in re: to this cancer.
Experiences such as yours are so very valuable to all of us. Thank you for joining. Most likely, many others will have comments coming your way.
MarionsI would like to correct my posting in re: to the Phase II clinical study completed with patients. The phase II clinical study I was referring to in my original posting had been completed with patients suffering from ovarian cancer only however, in the two Phase I clinical studies completed thus far, the investigational drug has demonstrated acceptable pharmacokinetic profiles in human volunteers with no reported side effects. This drug has not been tested in patients with CC. It received
Dear Martin Family,
my sincere condolences to all. Hoping for you heart to heal…one day at a time.
Sincerely,
MarionsAlice,
I don’t have any more information other then what has been posted by me and the additional link given by Gen. It will be highly unlikely for many physicians to have been exposed to this drug at this time as it just has received orphan drug status. It would be the physician making contact with the drug company in order to receive more info in re: to the efficiacy of this product.
I will look into this further within the following week and pass on whatever information I can gather.
Marionsrjoday,
that is what it is about…sharing our information…we are all yearning for the same….answers and a cure for this cancer.
My best to all,
MarionsMaryanne,
your wonderful blog is one I have been reading all along. So sorry to be hearing about Joe.
In our case, when addressing the stent placement, we contacted several gastro. doc’s and asked for referrals. Interestingly, it seemed that most were leading us to one specific physician specializing in this particular area of gastroenterology whom ultimately, we chose for the procedure.
I would assume that by calling Northwestern or even your local hospital you most likely will have plenty of physicians to call on. Also, although your current oncologist may or may not agree with your type of treatment you had chosen for Joe, she may very well be able to connect you with a reputable physician with quite a bit of experience in this area of stent placement. My standard questions: How many of these procedures have you performed and have you ever treated anyone with CC?
I am thinking of you and sending my best wishes and tons of hopeful thoughts your way.
MarionsCharlene,
so great to hear that John is responding favorably to the antibiotics as we have seen in many other cases of sepsis. Hoping for him to continue to improve. I have had several discussions with numerous physicians in re: to the power of “hope” and all of us agreed that when confronted with a critical situation it is “hope” that will carrry us forward and is the very last thing to be taken from us.
My best to you and John,
MarionsCharlene,
Hoping for the sepsis to be brought under control with antibiotics.
Thinking of you and sending warm and hopeful wishes.
Marions
