1

(40 replies, posted in Clinical Trials)

Hi Kris
i don't work now. You?  Friday 1/4?  that would be great.  Let's see who else might be available.  my email is kyraserena@aol.com.
Looking forward!
Regina

2

(40 replies, posted in Clinical Trials)

Hi Kris
on the 5th I will most likely be heading to Baltimore for my visit 1/6.  on the 9th, I will hopefully be leaving for italy.  I will be available anytime before. I hope we can work this out. best,
Serena

3

(40 replies, posted in Clinical Trials)

Thanks, all of you!  this has to change, but soon.

Has  anyone here had a red blood cell transfusion that did not restore vitality?  i received two units on wednesday when my hemoglobin was 7.5, and i thought i'd prance out of there, but...nothing!

thanks,
Regina

4

(40 replies, posted in Clinical Trials)

Well, my scans look good, but i don't.  my hemoglobin kept plummeting for no apparent reason, so i finally had a transfusion after having ruled out internal bleeding with a colonoscopy/endoscopy, sonogram, and CT.  I was disappointed, putting it mildly, not to have been re-energized afterwards.

I am also taking lots of oxycontin since I have a great deal of pain in my bloated abdomen and my back, again with no explanation.  I took a break from the meds due to the latter and the fact that ALT was quite elevated. In the last week, all liver enzymes have come down, as has CEA, but so has hemoglobin, rbc, wbc, lymph, platelets.  Except for hemo and rbc, those had all been fine while i was on the meds.  seeing a hepatologist tomw.

Not getting a lot of holiday shopping done, but being doted upon by darling daughter.

Kris--  any tree viewing coming up?

hugs,
Regina

wonderful!
Regina

6

(40 replies, posted in Clinical Trials)

Kris et al~

I would love to get together to see the tree!  I live on the Upper West Side and I still don't see it in person (avoiding all those silly tourists wink ).

I am now courageously sporting a very short, styled hairdo and doing my best to put on a face that says, "I feel beautiful."  My friends see right through that and lie back in response, "You look amazing!"  uhuh.  It just ain't me, but it's another interesting challenge.  As long as I don't have acne to go with it.

So, get in touch when you're ready to come in.  I'll help us plan whatever.

Warm short-haired cuddles all around.
Regina

7

(40 replies, posted in Clinical Trials)

Hi Carrie~

Sorry to hear that your busy family has to go through this, of all things.  I wish I could have met you both, especially because we'd be on the same schedule, but I have succeeded in having myself switched back up to Johns Hopkins, which is much close to NYC.  I had gone there initially, but they had some bureaucratic glitches creating a problem enrolling patients on a timely basis.

Your team at MDA is terrific.  Shroff is a great listener and allows for questions with no rush.  she appears to be extremely knowledgeable.  Zinner is my personal favorite because he has a good sense of humor, lively spirit and a professor's enthusiasm for explaining the scientific basis of anything you ask about.  Lindsay Law is a very caring nurse, and Chichi, Zinner's NP is a bundle of friendly and practical energy.  Jing is very competent, but beware of subtle language-based (probably) misunderstandings that could seem uncaring or as repudiations.

There is much excitement around this trial, so I have a lot of hope for us.

As per side effects, I had all the same ones.  They seemed to mellow with the passage of time and learning the patterns and remedies.  At one point, I had acne so bad I felt that people were looking away so as not to appear to stare (at a 53year old with acne).  I took topical antibiotics and soon began oral doxycline, which have worked very well.  Still healing. but no more whiteheads.  I had a red dot-like rash on my groin and my right inner elbow, but they are disappearing and didn't bother me much.

I have occasional diarrhea, but it is quickly stopped with immodium, maximum of two have been needed.  You are advised to catch it right away.  I have often felt tired for the rest of the day after these bouts.  Quick and ongoing rehydration is critical.  I've even used some Pedialyte on some occasions, with success.  Be sure he avoids sugar alcohols like maltitol, inositol, etc., which have a laxative effect.  I used sugar-free candies and a fizzy electrolyte replacement tab to keep my mouth wet and rehydrate and kept waking up with diarrhea.  I had no idea for quite awhile.  -- Don't assume that all odd symptoms are just the meds! -- I do often have gas causing me, on some days, to burp incessantly.  (my peeps are used to it.) I shifted my pill time to just before bedtime to avoid the feeling of tiredness and belly ache I often got an hour after dosing.

As per blood pressure, I took some pride and solace in mine having always been low (90/60), having been an athlete all my life.  In the first month that I was on these meds, it rose to a bit higher than normal (125/85), but it has not continued to rise; in fact, it has come down some.  In fact, all the lab tests that rose as an apparent result of the meds, have actually come very close to normal or acceptable now, seven weeks later.

You are in good hands at MDAnderson -- you can just feel the science going on there -- but be sure to stay on top of it all and press for answers to questions you have.  They have the patient care figured out pretty well.  I advise you to stay at the Rotary House, but book far in advance.  Gorgeous pool, very good dining (there's very little else around there, if at all), very friendly people, information, patient coordination, everything.

Let's stay in touch!  Good luck!
Regina

Yes!

warm regards,
Regina

It's pretty exciting to me that CC is being given some serious attention now.  This line of reasoning will surely open multiple avenues of research and discovery.

As per sushi, I think of it as Russian Roulette.  There are so many possible parasites in even very fresh fish form "reputable sources" (who would never know if a fish is infected), that I can't believe anyone thought this would be a good idea.  That said, I don't know if infection with parasites has increased in parallel to increased Western sushi consumption, but there are many that would express their ill effects much later, out of context from initial ingestion.  I love it, but I try to get my family to steer clear.

Regina

This is fascinating and important.  I look forward to advancing research results.  Thanks for keeping us up to date.
Regina

11

(40 replies, posted in Good News / What's Working)

Hi Lainy~  That is indeed an intriguing series of dreams.  I think your somnolent mind is trying to make sense of what is difficult to comprehend and proposing ideas, borrowed from reality and tempered with fantasy, that would resolve the discomfort.

I'd love to get together.  Do you ever get to NY?  I'd love to get to Arizona someday, but not sure it's in the cards anytime soon.  Maybe we could all have a skype chat or video chat (with technical assistance from my daughter).

I got my friend to answer the door, finally.  Why he didn't say anything, I do not know.  We ate Chinese food and spaced out on Masterpiece Theater.

Is the "brain freeze" similar to what I describe? 

Good luck with all the side effects.  I'm trying to adjust my expectations about how I'm supposed to feel.

warm regards,
~Regina

12

(22 replies, posted in General Discussion)

If you haven't already, please check all the clinical trials websites.  The NCI and the Armstrong Foundation, among others, have excellent matching services.  I believe that in some cases, the research group will pay for the extra testing you need for the trials.  Also, insurance companies usually benefit from covering patients for trial testing because they would not have to pay for the expensive medications they might otherwise have to.

Good luck -- there are many possibilities out there!
~Regina

13

(40 replies, posted in Good News / What's Working)

Sorry, those were all the negative side effects.  Other than those, I am enjoying life wholesomely, my senses fully attuned to every pleasure and diversion in my slowed down present.  With some hilarious adventures thrown in.

with appreciation
~Regina

14

(40 replies, posted in Good News / What's Working)

Hi Marion, Lainy, Mary, Holly, Kris, et al.~  I don't know why sometimes I have these surges of activity -- I was kind of overemphasizing that, perhaps, but I will ride that wind as long as I can when it blows this way.  Today, for example, I got up, called my mother for her birthday (a long one), had breakfast, pushed myself through a laborious (small) jog in the gloriously fresh, rain-scented sea air (oh, how I love not being in Houston), had a complicated trip planning conversation with my man, which exhausted me and led to a long nap, into dark of night.  I still can't keep my eyes completely open.  I ordered Chinese food and a while later, when there was a knock on the door, I wouldn't let the guy in (he said he was "iny" when I asked) because I didn't think I was expecting anyone.  (I guess he meant "Chinese.")  True story.

My MDAnderson sojourn, at least the medical aspect, went fairly well.  The drugs are causing my blood pressure to go up about 30 points sys/dias in a month, and the team is in disagreement as to whether to treat it because I'm barely above normal, because my "normal" is so low.  Interesting debates have ensued as to whether the numbers to be considered are the standard 120/80 or my usual 90/60 as a baseline.  My acne is getting a bit better on topical and oral antibiotics, but a new rash of unknown origin erupted on my inner arms and groin area.  Liver enzymes (not bili) zoomed up, as expected, so now I have to have labs done every week.  Otherwise, I have extremely dry mouth (bread in my mouth feels like bread crumpled into my palms), this unpredictable, mind-doping sleepiness, sporadic  wheezy feeling on exertion and occasional diarrhea.

Awaiting scans in November -- this time at Johns Hopkins!!  Thanks for crossing all those things for me!  (You better uncross your eyes, though, or they might stay like that.)

My best heartfelt wishes to you all.

~Regina

15

(40 replies, posted in Good News / What's Working)

Hi Holly!  No one has called me that in ages!!  (You blew my cover.  Shh.)  So you need a tumor, huh?  I have lots of extras.  How can your numbers be so high without a tumor???  Isn't there some other weird mechanism that can cause this other than growth of cancer?  These are all supposed to be "aggressive," and yet, quite a few folks are holding steady for a long while.  I had understood that your platelets had gone back up over 100.  Did they go back down?  I can't believe that after all you went through, the procedure wasn't effective.  Ugh.  You are brave and strong, dear Holly.  How about an approved targeted drug, since not all of them affect platelets? Want some phone numbers at MDAnderson?  I'll even throw in some crazy Houston adventures from my last thirty six hour solo round trip, ending yesterday, and maybe a few tips (learned the hard way).

How are you feeling?  Thinking of you accompanied by fierce healing emanations of every kind I can muster in your direction.

BTW, Johns Hopkins is going to take me, so I will be there sometime around the 16-18th of November with a panoply of graphs, rays and grams.

hugs,
Serena

16

(2 replies, posted in Good News / What's Working)

Dr. Kato seems to have hands of gold.  He has courageously and diligently performed many surgeries successfully that no one dared to do.  He has worked alongside my surgeon, Jean Emond, whom I greatly admire and appreciate for his skill, wisdom and bedside manner.

Perhaps a useful tip:  There may be a long wait for a surgery date a Columbia; thus, Emond offered to operate on me at Holy Name Hospital in NJ, which offered the great benefit that he operated on me himself and the nursing care was better.

Best of luck,
Regina

When I said "Since it doesn't seem to matter whether one is MEK/MET positive or not, as to efficacy, they all seem to be worth a try for many of us," I meant that all my oncologists queried did not seem concerned that I express neither MET or MEK, in the sense that they believe that the inhibitors would work regardless of that fact.  That's all.  Nothing to do with comorbidities or vulnerabilities.

Obviously, one should only work with doctors familiar with or who have access to information about the drugs they are dispensing. 

The genomic profiles are very interesting and promising and will be even more so in time.

best,
Regina

18

(40 replies, posted in Clinical Trials)

No prob!

Also, most insurance covers wigs, usually one go round with a pretty high cap, for cancer patients at specific locations.  It's worth a try.  I got a beautiful human hair wig in that way.

~Regina

Exactly.  Since it doesn't seem to matter whether one is MEK/MET positive or not, as to efficacy, they all seem to be worth a try for many of us.  The beauty of cabozantinib, besides its surprising success for other GI cancers is that, I discovered, that it can be prescribed by your doctor, thus avoiding the clinical trial setting.

Thanks for your excellent clarifications, Gavin.
~Regina

20

(40 replies, posted in Clinical Trials)

Kris~

hah!  Yeah, well, I'll wear a seat belt on the way to the beach, but I'm not too worried about the sunscreen.  (Except, I can't really use that anymore since the sun brings out the acne!)  Ultimately, it's all about vanity.

I agree, your scalp issue should really be only one or the other.  definitely protest. Although, once you're wearing a wig, what's the difference what you're covering up?  Have you tried that route?  I would love to write a story about my wig adventures.  I have gotten used to switching hairstyles and color on a regular basis.  The trouble is that I try to stay consistent with professional crowds, and I blew it last time -- showed up as a redhead where once I had been blonde -- and no one recognized me.  It may have been a good thing because my brain was full of cotton balls and I had nothing much to contribute.  I'll have to keep the blonde, ironically, for when I intend to be taken seriously.

Cheers~
Regina

21

(40 replies, posted in Clinical Trials)

Mary~
Just a quick response now since I have to dash~  sorry to hammer the point, but what I was saying about the cabo is that you don't have to be on a trial at all.  Your doc can prescribe it for you like any other medication.  Being on a Phase 1 trial is a pain in the neck with all the excess testing and reporting -- only worth it if it's your only option.  Cabozantinib can be prescribed like a regular medicine and paid for by insurance by your doc and you're on your merry way.


have a great day~
Regina

What a wonderful thing!  I'm very excited for you, too!  Thanks for letting us know.  And it would be great if you still feel up to keeping us posted.

Best of luck~
Regina

23

(40 replies, posted in Clinical Trials)

Hi Marion~ 

My onc told me about that interesting phenomenon with Erbitux; and I queried her as to whether it applied to MEK/Pazopanib, too, but she said it wasn't yet known.  I guess Kris and I will be among the numbers to inform future queriers.

Thank you for the interesting information you did provide.  I appreciate having some information to wrap my head around.  In fact, it stands to reason (maybe) that if the drugs are disrupting cell growth signaling such as to have a visible effect after only two weeks, it is possible that my already lowered CA19-9 could represent actual tumor growth remission.

One might as well entertain the possibility, anyway.

Hugs to you,
~Regina

24

(40 replies, posted in Clinical Trials)

Thanks, Lainy~

You keep me smiling, too.  The best defense is laughter!  Glad to know you're up for some gallows humor, because I have been holding back on this platform, feeling out the waters with one (oxali-numbed) toe at a time.

keep having fun!
~Regina

25

(40 replies, posted in Clinical Trials)

HI Kris~

Yes, we must meet up soon.  DId you tell me you are in NY, as I am?  I can't remember which platform we used to communicate previously.

How's your face these days?  Mine is approaching monstrous, frankly.  The trial nurse said I could start an oral antibiotic for the long term, but I'm a bit nervous about dilapidating my natural flora, affecting digestion, immune system, etc.

Why do these inhibitors cause acne???  I was hoping that if I was going to die young, at least I would die beautiful!

Sigh.
best to you!
Regina