May 10, 2012:  Kim joins the program by phone and talks about continuing her radiation treatments and offers listeners inspiration and support in dealing with their cancer.  Denise talks with Missy Stein, the 2012 Survivor Fundraising Chair. for Komen Philadelphia Race for the Cure.

Layers of Love: Comforting Chemotherapy Patients One Blanket at a Time wrote: "We hope you will join us Thursday, May 3 at 12:30pm est when we will be the guest on Let's Talk Cancer on WWDB-AM 860.

Thurs 4/2612 show featured Anne calling in from Ireland, David, a colon cancer patient and Kim was on board, feeling pretty poorly, from home by phone for the whole program.  Kim has more courage than anyone I know!  It was a very touching program.

Thursday 4/19/12 program:  Kim joins the program from home and talks about preparing for her upcoming radiation treatments and offers listeners inspiration and support in dealing with their cancer.  Denise is in the studio to welcome University of Pennsylvania students Ashley Brown and Alexa Guzman, Co-Chairs of Camp Kesem, a college run camp for children whose parent  or guardian have cancer.

5

(11 replies, posted in General Discussion)

Mark, glad to hear your dad is doing well.  One of the nasty things about cholangio is its proclivity to recur.  Just enjoy the good time while you have it.  Consider it a gift.

Kris, I've already shipped the disc to Abby, my dear onc.  She'll have a NYP radiologist read it.

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(11 replies, posted in General Discussion)

Just got a new CT done at a local hospital.  I asked the CT tech how many cases of cc she'd seen in the past year.  I was numero uno!  At that point, I thought it wise for her to alert the radiologist that I had cc, had a small cc feature removed from the rt lung, and that he would be looking for very small features (probably 2 to 4mm).

A compelling reason to avoid small or regional hospitals if you have cc or any other rare disease.

The radiology write up reflected this hospitals inexperience (very brief, nowhere close to the detail I've grown to expect from NY Presbyterian, and likely why they do not want their patients getting imaging done elsewhere.

Time to end this thread.  The path report wasn't good.  The feature removed from the right lung was cc and there is micro cc in the pleural fluid around the lung.  I was toying with restarting chemo, but according to my dear onc Abby, it's typically not effective if there are no visible tumors present.  She said if cc represents in either lung, Dr Sonett can just remove it again and again as needed.  Just have to hope it doesn't pop up in an inoperable place.  My MD onc knew Dr Sonett when they both were at Univ of MD medical school, and he said Dr Sonett has a huge reputation.  I vote to stick with overachievers every time.

Oh, BTW, the update was BY Kim, trooper that she is.  She stayed on the phone for the entire program.  She got a god awful haircut for the surgery to remove the mystery growth.  Not sure what it is yet.  Samples will be sent to Columbia after the local NJ pathologist finishes, but this is clearly a strange one.  None of my doctors at NY Presbyterian have seen cc met to the skull, so it appears this may be totally unrelated.  It was growing so fast that it presented a short term stroke risk, which is why Kim decided to have it done Tues, instead of just a biopsy then.  I talked to her at length Thursday, and other than some cosmetic issues, she's doing fine.

This weeks topic:  dental and oral health care needs of individuals battling various forms cancer at all stages, March 29 @ 12:30 PM.  Threre will be an update on Kim, who had surgery yesterday, also.

Jeff,  there's a board section here called "Surgery, Resection & Transplant Treatment Options"

Discussions involving the various surgical techniques.

I'm not sure how a Whipple may differ from a resection, which I've had, but there's lots of both around here.  No need to feel alone.

Y90 can only be done 2x in a lifetime (I suspect due to toxicity).  It is typically done as a palliative, rather than a cure, to extend life.  There is a mapping procedure done a few weeks to a month prior to determine where the radioactive material will go.  If more than a small % (I think 3%) go to other than the liver, the procedure may not be done.

Primary side effect of Y90 is fatigue, plus other more subtle ones.

I hope this answers some of the questions.

This weeks' topic on March 22,2012 Children of parents with cancer, and a special update on Kim... be sure to tune in.

13

(15 replies, posted in General Discussion)

Jose, I was on Gemzar for six months, and a major effect on me was appetite loss.  I had to almost force myself to eat, especially the day of infusion and the day after.  Lot of smaller meals helped, along with healthy snacks. 

Some years ago, following a cardiac surgery, I was given Ativan in the ICU, which caused an LSD type drug trip.  They said no more of that for me!

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(8 replies, posted in General Discussion)

A really good, experienced surgeon will not be surprised very often.

I generally agree with Eli and Lainy as well.  If you qualify for surgery, then you have to hope for some luck as well.

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(21 replies, posted in General Discussion)

Cindy, take a deep breath and relax (or try)!  I'll be thinking of you tomorrow.

Don't forget to call in Thurs between 12:30 and 1PM EDT 610-664-4100.

Kris, one way or another, we will meet!

Lainy, you don't know real pain until you hear my dear wife sing.  The pets put their paws over their ears.

Time to say 'yes to drugs" for another night of uninterrupted sleep.  No real pain, though.

Kim or Percy here can help with interpretation.  Sounds like general improvement with nothing getting worse.  I would overnight the disc to Dr Kato.

Well, just got back to NJ Sat from having a small adeno carcenoma removed Wed afternoon from my rt lung at NY Presbyterian.  Dr Josh Sonett was the surgeon and he's pretty sure he got it all.  Now's just to wait for the final path report.  I'm hoping for a new lung primary and no cc mets.  We'll know in a week to 10 days.  Surgery was totally unremarkable and recovery a piece of cake.  Just some swelling and soreness at the incision site and the garden hose drain hole.

Just another bump in the cancer road!

Heading home to MD in a few hours.

March 15th's program will feature a continuation of the Pediatric Cancer theme, and call in number is 610-664-4100  between 12:30 and 1:00 PM EST.  If you have a story to tell, please call in ... it's what keep the show fresh and interesting.  Hopefully your story will be inspirational.

Some  more info:
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(82 replies, posted in General Discussion)

Grover, the full feeling after eating a small amount is completely normal, and will persist for a month or so.  I remember the same feeling.  Truth is, your stomach is probably smaller now than it used to be.  Even now, after almost 3 years, I have to resist eating too fast and/or too much ... not a big deal and you will adjust pretty quickly.  Glad you're on your way home so soon.  Just don't overdo in the first few weeks.

Glad everything worked out without issues.  Take care, my friend.

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(82 replies, posted in General Discussion)

Nice to hear from you, Grover, even if spelling (typing??) isn't your forte today.  You'll  be feeling pretty normal before you know it!  You must be progressing well to be in a regular room.