kentuckyjack
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Rick–I’ve learned to love those hugs, too! But I really have to be careful hugging the ladies! Don’t you just hate the way your cheeks sting after a good slap?
Happy 4th to you, Rick.
Thanks for the award, Lainy!! Not only did you figure out the award I was fishing for, but you made me laugh, and that always merits an award right back at you. God bless you both! And yes, you’ve an open invitation to the Grand Opening!
Last week the cancer center ran MRIs and CT scans on my chest and pelvis to see how my response to chemo was progressing. The good news is that the massive mass has continued to shrink down to 6.7 X 5.6cm from the previous 8s and 9s. When the onc showed me the scans on his computer both I and my friend could see the obvious serious reduction in size when compared with previous scans of this spidery mass with tentacles.
Some bad news is that it appears to be shrinking along the lines of its original apparent growth pattern, which means than although the outer parts are dying off, the encasement of the left portal vein and the anterior division of the right portal vein is unchanged. This and the fact that the mass originally and still abuts against the main portal vein, as well as unchanged obliteration of the middle and left hepatic veins by the mass lesion–provided the original grounds for ruling my stage 3 cc as “non-resectable.”
More good news is that the onc feels that the progress to date justifies further consultation with the surgeon who may possibly feel that things have changed enough to justfy the knife.
The other bad news is that my aggressive chemo treaments with the oxiliplatin/Gemzar/Xeloda blend have taken their toll on platelets and white blood cell counts, so I’ve been given this week “off” chemo. I had 4 Neuprogen shots last week but the marrow hasn’t yet been jump-started sufficient to resume treatment.
Yet more good news is that The tumor team is meeting this week, and I see my onc next Tuesday–when he anticipates a decision will have been made about whether to continue with chemo at the same or reduced dosage, or schedule straight away for surgery, or radioembolization or chemoembolization by the interventional team.
And still more good news is that the onc who originally characterized my tumor as “huge” has now characterized the response to treatment as “remarkable.” Makes me feel like clear progress has been made, and I just hope it keeps me ever more clearly on the path to surgery and recovery.
Thanks to all for your support!
Congratulations, Kristin. God only knows what the future holds, but he seems to be holding you gently in the palm of his hand. May he continue to do so, and may he continue to bless you with the joy at living you’ve expressed here and now.
Rick–I’m fairly new in this fight, so I’m barely fit to advise, but I think it may have been Norman Cousins who fueled his fight with the joy that movie comedies brought him. I’ve gotten a few, and intersperse them with westerns, and the occasional anger-inducing revenge flick. I even laughed at an old Sopranos episode where the main character laughed himself to sleep with old Jimmy Cagney “Public Enemy” type movies.
And then I recently reread Robert Heinlein’s book “Job-A Comedy of Justice.”–as a jumping off point to the Old Testament book of Job. Seems like my life has paralleled Job’s sometimes.
Also take joy in all the support and kindness you’ve shown to others on this website. You are a blessing. We all have to face trials, and God bless you in yours especially this day. Rest well until you are guided to re-engage.
Lainy: You are a source of support we all treasure, and I know that your Teddy does, too. God bless you and Teddy in facing this challenge. Don’t forget to keep thinking outside the box of chemo-radiation and traditional oncology– though I’m probably preaching to the choir on this one!
I’m not at all happy that we become dependent on well-paid people who can make monumental mistakes concerning our lives.
And I’m pretty pissed at having to learn that I must truly impoverish myself–(even to the point of forced selling of family burial plots) in order to qualify myself for medicaid–because my COBRA-Blue Cross Blue Shield is running out of its 18 month eligibility period on July 31!
Rick–In response to your chemo treatment experience question (which I may have misunderstood): I am on infusion of oxiliplatin(sic?) and Gemzar once every two weeks, plus Xeloda pills daily for the week starting on infusion day, then rest a week. I’ve not heard of the other agents.
By the way My tumor’s bigger than Your tumor, so there! God help us laugh and pray and fight rather than suffer the gloomy pits!
God bless you, senior brother!
-Tom
Rick–I can’t say on this forum what I’d like to do with your radiologist for you. Let us hope hope for you that there has been an error at the Mayo end, as you hope. I’m sure you know what course you may take to protect others from an incompetent radiologist.
My feelings on this go far, far beyond anger. I’ve been an AMA victim, too.
God bless you, and God help us all.
Just Jill–I do apologize sincerely for the delay in getting back to you about Blue Cross/ Blue Shield. Between chemo fog and my own challenges, I’ve mentally set aside your situation. I am terribly disorganized when it comes to medical bills–there are stacks and stacks–am it isn’t yet getting better. When I can make myself get into the pile, then I’ll be able to get more information to you. I am so very sorry to have been unable to help you yet.
Brian– Your good news about your brother gives me hope as well. My tumor has been shrinking, as well (not as much as your brother’s!), but finding a surgeon who’s willing to take the risk and “dive In” may prove to be an equally challenging task. Very cautious, medically conservative docs “round here.”
A thought for you is to get all the anti-metastatic supplements into your brother’s system right away-it might be quite important. Life Extension Foundation published a research article giving their recommendations for post-surgical supplementation just a few months ago.
Congratulations to you and your brother on staying the course, finding the surgeon, and bravely getting it out. God bless you all in receiving and sharing your blessings with those of us needing your encouragement. I hope to hear more news on your brother’s progress. It just means so very much.
Hello, Jemima. I was diagnosed into the cholangiocarcinoma club earlier this year, and am benefitting from the new standard chemotherapy protocol just approved in 2009, as well as from naturopathic remedies (vitamins, minerals, herbals, and other oral supplements). Because of the large size (7.5-9.5 cm ) of my tumor, I did not initially qualify for surgical removal of the tumor, which I am told is the only cure for me.
Two thoughts to share:
1: After an initial 2 months of testing and working with a gastroenterologist and a general surgeon at a large local general hospital with a new cancer center–the general surgeon announced he was prepared to go ahead with surgery. I told the general surgeon that I planned to seek a second opinion prior to having him proceed.
I then talked to friends and family and did a computer web search and learned that a major National Cancer Institute-affiliated cancer center with a national reputation was well-established here. The surgeon I consulted with at the second hospital turned out to be both the head of a local university surgical department and a specialist in bile duct, liver, gall bladder, and pancreatic surgery.
The second surgeon (the specialist) explained that while the first surgeon was a good general surgeon whom he knew personally, he (the second surgeon) worked with livers every day and this alone increased my chances of survival if I had surgery. He further explained that surgery on my tumor was of the highest level of difficulty even for him, and was on a par with open-heart surgery. I believe that the right second opinion may have saved my life thus far, and gotten me to a treatment facility better-equipped to handle my case.
2: Attitude is a word often misused and abused, but as others on this forum have said–it is an essential in fighting CC. Did you know that one definition of attitude is simply “the way you walk?” I had to read many dictionary definitions and meditate on them for a good long while before beginning to understand attitude.
Leo: From a guy who just got some similar good news after NOT taking an Alaskan cruise to one who got his good news after TAKING an Alaskan cruise—Hey! I’d have preferred to have had the cruise, I think. Congratulations on the success and renewed hopes. May the Lord continue his blessings!!
Saracita: I joined the CC club after you posted your mushroom question, but here’s what I’ve experienced. I sought advice from the Naturopathic Physician/Cancer specialist at the Life Extension Foundation, and he recommended Versicolor (Coriolus) Mushroom extract. I googled it, and it is advertised as being the number one prescribed treatment for cancer in Japan. So now I take it, along with many other vitamins, minerals, herbals, and other supplements.
The two best sources of information that I’ve found on supplementation are Jean Carper and her book “Miracle Cures,” and the Life Extension Foundation (and their Naturopathic physicians). Note that both websites sell what they recommend, so they do have a financial interest as well as a medical interest.
Note: I’m neither a Naturopath nor an Allopathic (regular) physician, just a fellow cancer fighter. Good luck and God bless!
