(18 replies, posted in General Discussion)

Charlotte -

Thank you for this info.  I will follow it to determine when it will start taking patients.



(91 replies, posted in Introductions!)

Keep that image of a meadow firmly fixed in your mind.  Fill it out with all the details you can - grass, flowers, trees, a slight breeze, maybe a brook running through it.  This will help you over the next months and afterwards.  Tell your dad that he can always contact you in that meadow.  That should provide some measure of peace for both of you.



(6 replies, posted in Members' Cafe)

How sweet it is to hear you and see your enthusiasm!



(2 replies, posted in Members' Cafe)

True story.  Could not make this up if I tried.

In my youth (pre-teen) I didn't always look deeply into things.  One Mother's Day I was frantically looking for a card (on Saturday).  Found a beautiful one.  Did not carefully read the inner message.  Could not understand why Mother laughed when she read it.  She simply handed it to me without comment.  Message was something like:  "Even though you have no children of your own, you have brought joy to many."

It was then that I fully understood the term "embarrassed laughter".

Happy Mother's Day to all (whether or not you have children of your own)!



(42 replies, posted in Introductions!)

I had been on carbo/gem for 8 treatments and the main tumor in the liver was still shrinking when they took me off.  Why?  "Standard  protocol is only for 8 treatments because it might damage the kidneys."  There was no indication of any damage to the kidneys.  This is what happens when you have  an inexperienced onc.  Never confuse enthusiasm with expertise.

I had the same issue with blood in the nasal mucus.  Definitely correlated to low platelets.  I needed greater than 80,000 to get a treatment.  Dropped to 40,000 sometimes.  Seems that chemo destroys platelets.  My problem seems to be that they are being captured in the spleen and do not circulate.


Is it too early for whale watching off the Cape?  That's one thing Aimee and I try to do whenever we are on a coast.


Catherine -
I'm sure that running out of vacation is one of the best things you could hope for.  Maybe your employer would support days off without pay so you can take 3 day weekends.  You've got DC, the Virginia coast, Delaware, Shenandoah Valley, and lots more within driving or train range.



(17 replies, posted in Members' Cafe)

So, what is the retirement age for HIM?  Hopefully it's just a vacation to the mountains or maybe Minnesota or Wisconsin, some place cool.



(12 replies, posted in Members' Cafe)

This just confirms what so many of us already knew - Mark will always be with you, especially in the times of your greatest need.


Very interesting.  Recommend you read and discuss with your onc.  Not everyone likes sorafenib (Mayo Clinic does, Cleveland Clinic and University Hospitals do not).



(17 replies, posted in Members' Cafe)

You are simply amazing!  Will Orville being attending services at the synagogue with you?  Bet it would be hard to find the right size yamulke(s), but you can get them in large quantities on Amazon.


Cleveland Clinic is one of the 14 hospitals!

Wonder how soon this will take off.



(10 replies, posted in Members' Cafe)

This is not my typical upbeat post, but something I need to say.  I'm being selfish – this one's for me.

A few recent posts have prompted this post; I've been trying to figure out how to express it for some time.  Some of us may actually be on borrowed time (as opposed to the common view that we will die early).  We may have had earlier experiences which could have resulted in our deaths, but for some reason that did not happen.  Maybe it was so that we could accomplish something – raise a family for example, be an example, help someone.  Whatever it was, we need to fulfill our “pay forward” debt for our extended lives, not bemoan “It's not fair.”

Don't worry, I'm not giving up for a long time, until I see the sign on Hercules' river that says “Waterfalls Ahead” or the one that says “Road Ends ¼ mile Ahead” or Brünnhilde (aka “the fat lady”) is just offstage ready for her aria in Götterdämmerung.  My hymn now is “How Great Thou Art” not “Shall We Gather at the River”.

Anyone eligible for resections:  I'm envious of the gift you have been given, not jealous.  I rejoice in every bit of your good news posts.  It helps me more than you will ever know.  Do one thing for all of us:  live life to the fullest and help each other to do the same.  For everyone else, accept the cards we have been dealt and live one day at a time, doing the best we can, as long as we can.



What do we really know about them?  How soon to they show up?  Birth?  Teenager?  Just before the cancer starts?  What triggers the alterations?

After the alterations start, can there be additional changes?  New ones?  Old ones disappear?  Is there any limit to the number of alterations?



(10 replies, posted in In Remembrance)

Kris -
Words can't express the sorrow everyone here feels.  I've followed Mark's fight since I joined and was always inspired how the both of you celebrated every victory and came back after every setback.  Even though Mark is not here with you physically to heal, know that he is with you always and will help you through this.


"Annoying patients may live longer" - count me in for that.  I can even supply testimonials to back it up!

The only problem I ever had with steroids was staying up all night.  But that seems to have gone away.

Love your upbeat attitude.  Remember, you are your own best advocate.


I had the same issue with cold affecting my fingers - especially taking food out of the freezer - when I was on FOLFOX6.  It gradually lessened over a week or so.  Am now on irinotecan which is part of the FOLFIRINOX it seems.

Sounds like your Mayo team has the experience and a plan to get you through this.  Hang in there.



(91 replies, posted in Introductions!)

And it's not just teenagers who can be affected.  In December I brought my two sons (ages 32 and 26) with me to a chemo treatment.  My goal was to take some of the mystery out of it.  Instead I think it sent their minds somewhere they had never gone before (at least consciously).  We did not talk much about it on the way home or since.  In the long run I think it was the right thing to do.  Short term it may have been a shock to them.



(14 replies, posted in General Discussion)

Kris -
One day at a time and treasure each day as a new miracle.


Lainy -

Why was I surprised to find you identifying with Gaiea?

Why does Arizona go on Daylight Savings Time?  Don' save it, share it with the rest of us.



(11 replies, posted in Members' Cafe)

Melinda -
Really - not having to shave my legs?  Be still my fevered heart! <lol> Never considered that one.  Will I be a trend-setter on the beach or what?

Second irinotecan treatment today.  All is well, so far.

Dr. Sohal mentioned one thing when I showed him an article posted by Gavin (http://www.ncbi.nlm.nih.gov/pubmed/25899049)
about combining Radiofrequency Ablation with chemo.  This was a compendium of available studies, not an original test.  Since people are screened before being accepted into a trial, they are on the "healthier" side of our population.  This may skew the results to be more positive than a pure "blind" trial would.  In other words they may unintentionally "cherry picking".  He did agree that this could be an incentive to conduct a trial.

Peace, love, save the whales.



(3 replies, posted in General Discussion)

My experience is that tumors in the liver may give you some discomfort at the bottom of the rib cage on the right side.

Could it be heart burn from eating?  Or, maybe try lighter foods, like some soups.  Or smaller meals more often, stopping before she gets the feeling of being full.

In any case, Gavin has the right idea, get to her GP to check things out.


Gavin -
I'm thinking the weeks in Arizona must be calculated differently than they are in the rest of the country, plus Scotland.  It's probably only five days long because they don't count Saturday and Sunday since everyone is either playing golf or tennis and that doesn't count.

You know, we could make up posts pretending to be Lainy and see if anyone notices.  That would certainly bring her back, if nothing else than to save her reputation.

"Hello from Shangri La.  Decided to take a quick vacation here to recover.  Glad I can put the colitis behind me.  But it's so boring here.  Nothing but chicken soup with matzo balls.  Can't get lasagna or any pasta.  Not that I don't think of anything besides food.  There's cliff diving, hang gliding, and white water rafting.  Not sure how I will fit them all into my schedule.  There's bingo with the Catholics, line dancing with the Baptists, pot lucks with the Methodists.  It's almost overwhelming for a Jewish girl from Minnesota.



I just figured out what you are planning.  You're going to be super nice to Admissions, even the pre-op team (always a good move to be nice to people with needles).  But once you wake up and they start giving you orders, look out for the real Lainy to emerge.  YOU will be giving THEM orders!  And Robin will play the innocent in the background.

Busted, Lainy.  Maybe I should contact the hospital now and warn them.  Or, just sit back and wait for your stories.



(11 replies, posted in Members' Cafe)

I forgot about Billy's hat and glasses.