Saturday, December 24, 2011

COOKIES!!!!!!!!!!!!!!

Rosie and I had fun baking cookies!!  There are lemon butter cookies, ginger cookies, peppermint meringues, and caramel, pretzel, peanut topped blondies!!Yum!

Wednesday, December 21, 2011

More...

                 Live like chocolate milk......

                                                              crm


I love you, Rosie!!!   - c

From a favorite poet...

Hope flies on  dragonfly wings.
                 Thin glitter
     whisked with the breeze.
                         Such a tiny, delicate song.

The trumpeting of the heart is so very loud.
                   Garish.
              Grating the soft meadows
                       with harsh hot and cold.

Together, the soft and the weak,
                   the proud and the overpowering,
can make such a melody
          to soothe
                 the sadness
          that lingers in our
                 tired,
                        tired hands.

C. Rose Morris

(Was intending to send this to Dr. M. I think he would have liked it.)   Enjoy. - c
            

Monday, December 19, 2011

Today I lost...

...a dear friend, a wonderful mentor, a kindred spirit in the world of words and music. His family lost even more.

You always said, what our patients and families wanted most was 'to be known'. I hope you knew....I knew YOU. As much as any of us can. Thanks for giving me my start, for putting up with my questions, enduring my feeble reports. Thanks for sharing books and music with me. Thanks for your gentle smile. Thanks for your incredible support. Thanks..for being you. Your light is gone and for those of us you left behind there are corners that will be forever dimmed. I must remember how lucky I have been...to have been in the presence of your grace...if only for a little while. Much love - c

Saturday, December 17, 2011

All the critters are home!

Plus one! Fred got back last week. A friend of his...and ours...joined us yesterday. And we all went down to Atlanta to pick up Rosie and her things today! With Bent and T and Fred-o moving and grooving...it was a piece of cake!! Got to get back in the cooking groove for some big, active appetites! Rosie and I have already planned out the coming week. It's fun to have the busy bees back for a while!

Doing pretty well myself. Did the elliptical yesterday. With our early am start, moving Roo, and playing hookie with the kids this evening...that was all the exercise I managed today. I am confident Rosie will help whip me back into my routine in the coming weeks. Mouth ulcers remain...but the headache is finally gone...so that's a good thing.

Got a letter of apology from the aforementioned 'J. MD'...."Your thoughtful and detailed letter has allowed me to reflect on my deficiences." (His spelling..not mine. Have to admit, that sentence made me smile!) "Beginning your visit without reading your chart was incompetent. My remarks exhibited insensitivity and callousness on my part....In the future, I promise that my patient encounters will be attended with more compassion." Hmmmm, guess it's hard to remember to do spell check with one arm twisted behind your back by your internationally acclaimed attending! Perhaps I am too cynical. Hopefully, J actually learned something...if only that some patients will actually call you out...and adjust his efforts so that such complaints will never be needed again. Or maybe....he will really think about what it feels like to be the PATIENT! You reckon? - c

Wednesday, December 14, 2011

Go Team Steven!!!

"Are you ready for the next evolution?"

"I said, ARE YOU READY FOR THE NEXT EVOLUTION????!"

"Oooooooouuuuuu Yah, Master Chief!"  (Rosie and I are fans of G.I.Jane!!!)

But, my friend, Steven, is fighting the real deal with the start of his second round of IL2 today!!!  Hang in there, Steven!  We're all rooting for you!

As for me, made it through my three 12 hour shifts for this week!!!  Still a bit tired and achy.  Mouth lesions returned last night, making my teeth feel like serrated knives...which I guess they are...in a way.

It's been a bit exciting around here with the motor of one of the heating units dying a loud and vibrating sort of death while Fred and I ate supper last night.  Poor Zeno didn't know what had happened in his normally quiet little world.  But, Fred was on it today while Brent and I were at work, getting that repaired and the gutters cleaned.  Tomorrow, roofing guys are supposed to at least make contact.  Because, no....the gutter repair did not!  (Repair anything...that is!!!)  Perhaps we will have all our repairs accomplished before the New Year.  It would help a great deal in the meeting of that goal if things would stop breaking!  Oh, well....  Peds Care Christmas party tomorrow.  It should be fun. - c

Sunday, December 11, 2011

So....how AM I feeling???

My wrists started feeling achy on the way home.  Have had a lingering headache for two days with continued arthralgias in wrists, ankles, knees, and elbows. My muscles sort of ache as though I did a big workout about 30 hours ago..which I did not!!!  But, it is not as bad as with the last infusion.  Baked a pie and cake this morning, made up a batch of spaghetti sauce, and put together a meatloaf and stuffed bell peppers to bake off later this week.  (I did have a wonderful Fred-o sou chef!) This afternoon I did 15 minutes on the elliptical with a respectable rate.  So....I'm fine and plan to go off to work tomorrow!  Though wondering whether you are having strange symptoms can make you feel a little psycho!!! - c

The hands down, most obnoxious, infuriating, insensitive, jerk I have EVER met masquerading as a medical professional!

This is a letter I actually sent to said individual.  I doubt it will do any good, but, at least I tried.  And, in no way, do I hold Dr. Weber accountable for Jerk's behavior (though via a copy of this letter he will be informed of it).  I can only hope that Jerk will avail himself of the role model Dr. Weber provides...from the way he speaks to patients, his unhurried manner when answering their questions, his thoroughness in taking a history and doing an exam, and the genuine kindness and empathy he routinely conveys.

Dear Jerk MD (which in this case I can only presume stands for “mentally deficient”),

We “met” Friday in Dr. Weber’s clinic. However, you and I didn’t really. That is because when you entered the room you spent your first 2 minutes greeting and speaking to my husband, with not so much as a glance in my direction. He is a handsome and engaging man, to be sure, but I was the patient sitting in a hospital gown on the exam table who should have been the sole person of interest to you in that particular room. I have been caring for patients for 27 years, part of that time as a professor of nursing. Nurses, along with actual doctors of medicine, recognize that no matter if the patient is 2 weeks old or in a coma…they are the first person you should greet in a patient/provider encounter. Why? Well, first of all, it’s just good form, Jerk. Secondly, if you actually give your patient your attention for the first minute or two you can learn an incredible amount. You can note skin turgor, scars, lesions, obvious deformities, developmental stage. You can ascertain pain level by how they hold themselves, energy level by how they brighten, or not, at your greeting, general level of well being, by how well groomed they may or may not be. Get the idea?

To my husband, you announced that you were doing a fellowship in hemoc. Really? Given what transpired, your medical school and residency program should lose accreditation immediately. If that is not true, and you are actually a resident, you are misrepresenting yourself is a most reprehensible way.

At any rate, it rapidly became clear that you knew absolutely nothing about me. You know? You didn’t even have to be smart. You just needed to flip through the chart before walking in. So…not knowing what else to do, you start going through my med list…not well mind you.

Jerk: “So…you take….ahhhh….albuterol?”

Jerk: “Uhhhhh….and Symbicort? Oh so, like you have some asthma?”

Really, Jerk? But, wait….it gets better!!!!

Jerk: “Oh, so you’re on hormone replacement therapy?”

Patient: “No. Birth control pills.”

Jerk: “Oh, well….I didn’t really know how to ask, you know as you’re a woman of a certain age…hee hee.”

Patient: [not smiling] “Well, don’t ask it like that!”

Jerk: “Uhhhh. So…..how are you feeling?”

Patient: “Fine.”

Jerk: “Sooooo….are you having any…..uhhhhh, side effects?” [While flipping through the chart rather randomly.]

Patient: “Do you even know what trial I’m on?”

Jerk: [Shocked face, making it abundantly clear that he does indeed…NOT!] “Uhhhh…” [Looking desperately at the chart…] “You’re on number 155597.” (I am actually making that number up, although 55 was in it…all other quotes are absolutely verbatim.)

Patient: “And what medicine am I getting?”

Jerk: “One of the medicines that Dr. Weber….”

Patient: “Anti-PD1 and vaccines.”

Suffice it to say, conversation with you was a pointless endeavor. You did a rather lame “exam”. If Dr. Weber expected you to do the exam, I would love to read my chart to see what you dry-labbed since you did no eye exam, did not palpate my liver or spleen, did not do a thorough inspection of my skin, and found the inguinal nodes only when I showed you where they were. FYI…none of the things you were supposed to be seeking are peri-umbilical.

You were in my room, allowed to see my chart, given tacit permission to speak to me and touch me by my grace (mine, Dr. Weber’s and Moffitt’s, I suppose). All providers are allowed to have intimate knowledge and contact with their patients only by their grace. And trust me, your patients will not return to see you a second time unless you learn to treat people very differently or unless they are truly desperate and have NO other resources. In your case, as a student of some ilk, you are providing NOTHING. All patients who suffer your ministrations are getting nothing in return. As students, as we all once were, you should be doubly careful not to waste a patient’s time more than you already are. You are offering no services. Instead, you are in desperate need of theirs.

“Woman of a certain age”….really? Who the hell do you think you are? What did you say to Dr. Weber’s next patient? “Wow! You’re 65! Why are you even bothering with cancer treatment? You’re bound to die soon from old age??!” What if your next provider refers to you as a “Man of certain height challenges and questionable masculine mannerisms”? Don’t think you would care for that very much. It is bad enough to be treated in an off-hand, insulting manner by a grocery clerk. It is unconscionable to be treated so by a physician.

I doubt this will have much effect on you. It should. But, if you are already in a fellowship, you have a long history of bad habits to undo. Hopefully, you will make valuable use of your time with Dr. Weber. He ALWAYS greets the patient first, knows their history when he steps in the room, can do one of the most thorough yet rapid physicals I have ever observed, and retains kindness and a sense of humor during it all. Given his brilliance in his field and the desperation of his patient population, he could get by with much less….but he doesn’t. You don’t have his expertise to offer…but more importantly you are utterly lacking in his compassion. Perhaps, you could attain some level of expertise, I am fearful that compassion for the human spirit will continue to elude you.

Celeste Morris, RN, MSN, C-PNP….and most importantly, PATIENT

Anti-PD1 info

We had a later appointment time on this visit, but saw all our usual folks at the CRU.  Had our original nurse again and she always does a good job. IV was started easily and boatloads of lab was drawn. Walked over to the office to wait to see Dr. Weber. There, all new check-in staff, save one, were registering patients.  The turnover there is pretty impressive.  At any rate, our person, new to us, had trouble finding me in the computer, despite the fact that I've been going there a year now, had already been checked in that very day in the CRU, and was in possession of an arm band and an IV. Oh well, that was not the disturbing portion, rather it was her lamenting that she was so glad it was Friday since she had had such a busy two weeks and was sooooo tired.  Why, just last Friday there had been standing room only in the waiting room...ALL DAY...and it had just worn her out! Brent's eyes took on that worried...oh, dear....here she goes look....  But, I resisted... then....so I'll just say it here.... "Really, honey????!!!!!  You poor thing.  Just think, you still had a chair for you fat arse while cancer patients STOOD in your waiting room....having a gay old time, I'm sure!!!!"  I'm telling you, I am going to write a book....What NOT to say to Cancer Patients, So You Don't Look Like a Complete Schmuck!!!!

We were soon placed in our usual exam room only to be visited by the hands down, most obnoxious, infuriating, insensitive, jerk I have EVER met masquerading as a medical professional.  Worry not....explanation to all that on next entry.  I pass over it now, as I did most of it then...to get to the real reason we were there...the acquisition of information about me and my fellow anti-PD1 lab rats!!!  Dr. Weber arrived and Jerk M.D. (MD in this case stands for "mentally deficient") was silenced.

Because there were new developments on my CT scan (the notation of enlarging inguinal nodes and the granulomas in my anterior thighs) and some obscure spot in my left cerebellum according to my local radiologist (Who was very nice and spoke with Brent at length about all her findings...yet was still convinced that there are three places in my brain that appear to have been irradiated mets....now with no activity...but absolutely there in her opinion and explained away by nothing else...though Brent assured her that there was only the one lesion in the right frontal lobe that had actually been treated...plus, we and Weber have long known about the granulomas and inguinal nodes that developed as sequelae to my vaccines which Brent eplained as well.) Dr. Weber is going to have them reviewed at the meeting of the Moffitt Tumor Board on Wednesday.  He said he didn't think anything was a problem but thought it would be a good idea to review them.  He said he would let us know if there were any findings, stated that he felt that I was doing well, and gave the ok for my infusion.

Here is my best report of what he said regarding the trial in general:

All three groups (1, 3, and 10mg/kg) of the NON-resected arm are currently in process. The number of patients in the last, 10mg/kg group, was not made absolutely clear, but I deduce it is full with its requisite 10 because of other numbers sited later.  The 1 and 3mg/kg groups are full and the 10mg/kg group for the RESECTED arm will begin in January.

When asked what exactly made up a "handful of patients with vitiligo", we were told "3 or 4 out of 50". (That is part of the information that leads us to believe that all 3 goups of the nonresected arm are filled at 30 with 20 more from the first two groups of the resected...for a total of 50 patients enrolled currently.) SO...those numbers for the development of vitiligo are roughly 8%.  In other studies with biologic therapies, the rate of vitiligo runs about 3%, including the last data reported with Yervoy (ipi). Although, there was one IL2 study that demonstrated a rate of vitiligo development at about 25%.

We already know that 2 patients were taken off my study group early on. One individual developed swelling of the optic nerve on the 3mg/kg group, though I don't know if they were resected or non.  We also know that 4 people "failed" anti-PD1 and Dr. Weber placed them on ipi.  2 of them responded. He seems to feel that some people will respond to anti-PD1 and others will respond to ipi.  He also seems to think that for some, being primed with one, will allow for increased response to the other if given subsequently.  I imagine it as a venn diagram with individual responders to the individual drugs on either side and the center circle containing those who do well when they are combined. 

I asked what sort of study he would like to do regarding anti-PD1 next.  Dr. Weber replied that he would like to do a "sandwich study" with patients getting a couple months of anti-PD1 followed by ipi then finish up with some prescribed quantity of anti-PD1.  He said he didn't know if he could get it going, but he had been pretty good at getting funding so far....so....maybe...

And our final question was about overall response....he told us that there had been "10 responders out of 26".  We can only assume that that would be a count from the NONresected side.  Because, there were 30 minus the 4 who failed.  Plus, how do you tell if I, or anybody else in the REsected side is responding.  The only thing you can tell about us is if we were to DEVELOP something...then we are NOT responding....OR...if in 10 years we are still disease free....then....Yep! We responded!!!! At any rate, "10 responders out of 26" is roughly 40% which is consistent with the only other phase I anti-PD1 study data available, completed by Snzol at Yale. The caveat is, my study included vaccines and I don't think anyone knows what implication that will have on the final results, if any.

Walked back over to the CRU...got my CHAIR!!!! and infusion with no misadventures.  Back to the airport, managed to snag a ride on the 4:20 flight rather than the 6:30 one we were slated for.  Had a great dinner at a little Cuban place with Roo and drove back home for a good chat with Freddie who was home with the pups waiting for us!!!  Can't believe I have been doing this for a full year!!!!  Especially, the 6 months of every other week visits!!!  Oh, well....done 'til March!!!! - c

There was snow on the ground, so anti-PD1 and Tampa...

....here we come! I know it's time for my bug juice since I finally feel fully energized, though nightly itching, occasional weird rashes, ever increasing vitiligo, and the sensation that my tongue still feels as though it's been run over by a road grader...continues! At any rate, we left a bit of snow on the ground on Signal Mountain for an uneventful trip to Atlanta. Made it through security just fine, cause I know where they don't have the scanners set up! (That's pretty scary, isn't it you TSA peeps?!!) The flight down was easy enough. Went to pick up our car and the only one available in the "compact" section wouldn't crank!!! So, Brent went off for a chat and we got "upgraded" to a Nissan Sentra that drove like a truck...but at least it cranked!

Then, we were off for another Tampa adventure! Despite its seaside location, finding a good seafood restaurant in Tampa has been a bit of a challenge. And according to Yelp and Chowhound websites, apparently that is true even for the folks who live there.  At any rate, one name kept getting rave reviews...Walt'z Fish Shak in Madeira Beach. There was only one catch....they serve a daily menu based on the fish they have and once it's gone, they close. But, Brent was set on going. As soon as we were in the car, he had them on the phone to see if they could predict whether they would still be open when we got there. They thought we could make it from the airport by 8, and so yes, they said they would still be open.

Despite a few missed turns we arrived just at 8 with no real problems.  Though I have to say, while I admire the spirit, Christmas lights and blow-up snowmen look really odd when combined with palms. Walt'z looks to be a converted house right on the water, small and cozy, with waiters and chef mingling with the patrons...calling out as we walked in, "Are you the folks who called from the airport?"  We had fabulous boiled shrimp (pinks) served while still warm with a delicious horseradish dipping sauce.  I had scamp (grouper) lightly fried (perfectly) with a salad and Brent had blackened snapper with rice and peas.  The entire staff was friendly and charming and the food was great.  A real find.  I told them they were the special fun for my trip.

Then, it was back to our La Quinta home away from home and rest before our fun at Moffitt.  But, a special thanks to Walt'z and mostly to B...who works so hard to make my trips fun.  Love you, B! - c

Saturday, December 3, 2011

Enjoy....




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More fall color.....




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Fall....on Signal Mountain, TN....




Posted by Picasa  I love sharing the beautiful pictures of the places I have seen in my travels.  But, I always want to remember to appreciate the beautiful mountains in which I get to wander daily.  There are no leaves left on the trees today, but these pics are from a walk Brent and I took in our neighborhood a couple of weeks ago. - c

INSANITY fit test....number three!!!

This is for you, Roo!

EXERCISE                      8/12                          8/25                             12/3
switch kicks                      120                           124                              130
power jacks                      47                             49                                 56
power knees                     75                             90                                 100
power jumps                     30                             35                                 37
globe jumps                       5                               9                                  11
suicide jumps                    10                             14                                 16
low plank oblique              30                             42                                 45

Wouldn't say that it's any easier...but at least the numbers are a little better!!!  Figured I better do it now before anti-PD1 kicks my butt next week!!!

Keep on pushing!  - c                  

Latest info on anti-pd1...

Check out:
http://www.melanoma2011.com/slide-postings/

Scroll down to "Saturday" and at number 79...you can click on Dr. Weber's presentation.

He talks about ipi in general.  He notes that anti-PD1 priming followed by anti-CTLA-4 boosting might be useful.  Two patients who failed anti-PD1 had a major response when subsequently placed on ipi.  He discusses my cohort (Phase 1 trial of HLA A*0201 positive patients with resected stage IV melanoma with dosing every 2 weeks up to 24 weeks, then every 12 weeks for up to 2 years....1, 3, and 10mg/kg cohorts in groups of 10 and multi-peptide vaccines given with every injection up to week 24.)  He reports that "one episode of grade 3 colitis was observed" at 3 mg/kg; "grade 1-2 fatigue, hypothyroidism, dry mouth and rash were the most commonly seen toxicities, and there were several infusion-related hypersensitivity reactions without sequelae"; "vitiligo was observed in a handful of patients and may correlate with response"; "side effects did not appear to be cumulative and predominantly occurred in the first 4-8 weeks".  In final comments he states: "I believe that a phase III randomized placebo controlled stage IV NED trial with anti-PD1 antibody should be conducted."

So....my take on all that....well, sir....my vitiligo, granuloma flares, itching, weird mouth situation, and enlarged inguinal nodes did become evident around my 4th infusion.  However, in my opinion, the effects are most certainly cumulative as they have become much more prevalent and consistent over time (not just flaring after the infusion and diminishing as it was about time for another dose) and have continued even as I am now on the every 3 month dosing schedule.  I suppose his call for additional trials means that he thinks anti-PD1 holds promise.  However, it is ironic that in the coming trials some portion of the participants will not be getting the drug.  I feel a far better trial would be to pit anti-PD1 against ipi rather than placebo.  I think we are all clear on what happens to stage IV melanoma patients with no treatment.

For what it's worth....c

Anti-pd1 trials galore!!!!

This month marks a full year of my being under anti-PD1 treatment (MDX-1106 by Bristol Meyers Squibb) combined with vaccines at Moffitt in Tampa. However, anti-PD1 is now in development by 5 companies (BMS - MDX-1106, CureTech - CT-011, Merck/Scherring Plough - MK-3475/SCH 900475, Amplimmune/Glaxo Smith Kline - AMP-224, Genentec - no drug name yet).  However, the Genentec drug is technically an anti-PD1 ligand.  Trials for all of these include my BMS combo with vaccines at Moffitt as well as a new CureTech trial opening at Moffitt.  CureTech is also opening trials at Yale, Dartmouth, and locations in New York, Boston, Europe, and Israel. Merck/Sherring Plough is opening sites in San Antonio, Houston, Los Angeles, San Francisco, and Toronto.  Amplimmune will have sites in Detroit, North Carolina, and Nashville. BMS also has trials in New York and at Yale. 

So far, BMS has been in the lead with trials already in process, but it looks like game on for the rest of them.  Hope, they know what they are doing and there is real promise here.  Usually pharma knows where to place it's bets....so we will see....as data remains hard to come by....more on that next.....

Scans done...and all is well!

I did CT's of the neck, chest, abdomen, and pelvis along with an MRI of the brain yesterday.  Brent's review of the films along with the radiologist's report indicate that there is no sign of active metastatic disease.  There was the usual discourse of this blip and blank in my head along with, finally, recognition of the enlarged lymph nodes in my groin and the granulomas in my thighs...which the radiologist found very puzzling....but the rest of us know all about those!!!  So.....we will be off to Tampa for some more bug juice next week.

Thanks for all the support that has been sent my way! Much love - c