Sunday, September 25, 2011

One more skin topic

One other point that has become part of the development of vitiligo is the development of papular, rough nodules, that grow in size and become rather scab like, before they gradually resolve. So far these have occurred in the areas that develop vitiligo. I had my first ones on my left forearm somewhere around the 4th infusion of the anti-pd1 and vaccine combo. Weber's NP seemed puzzled by them at the time, but we mentioned them again to Dr. Weber on my last visit. In fact, he was able to see a couple that were resolving in a patch of vitiligo on my back/shoulder. He said it was due to inflammation and it's resolution as cells were destroyed. Which makes us believe that can only mean that it's bits of melanoma that is being sought out by angry T cells! Which is kind of scary...but obviously better than if they remained there to do their thing. Of course, that's a little conjecture on our part, but... At any rate, I have had two on my cheek (that are almost resolved now) and new ones on my neck since my last infusion.

Good day here. Ran three miles today. Would have been pretty easy if it weren't for this rockin bruise and big lump just below my knee at my shin from my run in with an open drawer 2 days ago! I think the drawer won! Just call me grace! - c


Feeling much stronger this week. Did an insane INSANITY workout on Friday, it was tough but I was much stronger than last week. Ran 2 miles with B and Z plus mowed and did some house work yesterday. (Thanks for all the support, Roo Roo!) Plan to run with them again today. Oddly enough, the mouth lesions that had resolved returned yesterday along with more itching. Nothing dreadful, just very WEIRD! New patches of vitiligo continue to develop. Bilateral inguinal nodes remain enlarged to the point that they are visible, not just palpable. Feel as though I am anti-PD1 possessed! But I suppose that's a good thing!??

Finally logged onto the Melanoma Research Foundation web site officially. Brent has followed these boards for years, but I never really had the strength....but some folks kept asking about anti-PD1 studies, so I thought my story might help. Had to use the name "Bubbles" since both 'Celeste' and 'Les' were taken. Poor Bent. Bet he never thought that pet name would be used in such a forum! Oh well, maybe my ebullient personality (his description, not mine!) is what has gotten me this far! Hoping you have an effervescent fall day! C

Sunday, September 18, 2011


Kind of say the least...but to be a complete reporter.... :>)
Anyhow, these are pictures of my back (where the vitiligo has become almost completely confluent) as well as arm, leg, and hands.  A rather strange situation, but there you have it.

Feeling MUCH better today. we go...until December! - c

Posted by Picasa

Saturday, September 17, 2011

Doing better!!!

Ran 2 miles yesterday and three today.  Tongue lesions are no longer increasing and are gradually resolving.  My ankles (and knees a little) bothered me when I ran...but hey...they're just ankles.  Can't lay off too long or I'll lose my positive strides and my asthma will kick in!!! Brent took pics of my vitiligo to send to Dr. Weber. As a photog he just couldn't let the sad little camera they used in the office do the job.  They are pretty impressive.  Will try to post some here later. Did some more yard work with Brent.  Trying to get the back yard in shape. 

Hope you all had a nice early fall day! - c

Thursday, September 15, 2011

Anti-PD1 is still kicking.... butt!!  HA!  To anyone who was worried that decreased frequency of administration may result in decreased effect....well, if the dimension of the side effects are any indication of the dimension of its power against melanoma....WE ARE GOOD TO GO!!!  I'm still tired.  Did a few projects around the house.  Developed pretty significant lesions on my tongue...shouldn't have tempted fate with the "tongue thing" comment the other day!  And all the itching is up and running.  Now...please understand that I am not complaining really.  It's just that I take my job as a lab rat quite seriously and I figure someday, SOMEBODY, may find importance in when effects happen, what they encompass, and how that rat did in the end.  Maybe not....but this is my attempt to give those answers to those who may find them useful.

Apart from that, Brent is developing a rather complicated theory about why which rats, both human and rodent, develop vitiligo, versus those who do not, and thereby have a more positive outcome in regard to their melanoma.  It has to do with the dendritic cells in the skin, their exposure to the melanoma antigen (either from vaccines or from tumor material itself), and the subsequent triggering of the immune response.  I'm telling you...the man is going to win the Nobel Prize for finding the answer to this mess!!  But bottom line, if he's right...does this mean I should be grateful that I am thin, thereby lacking in significant subcutaneous tissue into which the vaccines should have been injected?  Thankful that vaccine material drifted into my dermis either by chance or poor administration techniques by some of the administrators?  Remember Ruthie's dismay when tons of my "Elmer's Glue" came oozing back out of my injection sites? I can't answer those questions, but I'm betting Bentie will figure it out.  I'll just keep reporting.

In other news...the you tube video highlighting the fact that GLAMOUR magazine has been running ads for cigarettes to its young, female readership has almost 700 views!!!  Thanks to all of you who checked it out!  Would love it, if you could pass it on to others if you haven't already!

If Anti-PD1 is still kicking....then so am I!!!!! - c

Tuesday, September 13, 2011


Felt much better today.  Got some good rest for the first time since Thursday night, when my throat started hurting, last that helped.  Went to work today.  Was still feeling rather tired so my docs let me cut things a bit short and get out of the office around 2:30.  So....was able to come home and relax and have a good dinner with Brent.  Should be getting back to normal tomorrow, I guess!! Hope all is going well for each of you!  Much love - c

Monday, September 12, 2011

I ain't no lizard...I don't do that tongue thing!!!!

Yeah, well...Eddie (the dragon in Mulan) you will...if you take anti-PD1!!!!!  It's not so bad this lesions, but definitely weird!!  Felt REALLY bad today. Even made Brent check to make sure I didn't have strep...which I don't. I know I have cold, but oh my...this has been rather bad.  I had to take off from work today and I only missed one day off work with the past 6 months of therapy.  Back aches, head aches, just generally YUCK!!!  Might as well go to work tomorrow...staying off didn't change much.

Thanks to Rose and Ruthie for cheering conversation.  And thanks to Katherine for sending this to Roo...but I liked thought I would share it with you. Complete plagiarism here...don't even know who to credit...but here goes....

1.  Have a firm handshake.
2.  Look people in the eye.
3.  Sing in the shower.
4.  Own a great stereo system.
5.  If in a fight, hit first and hit hard.
6.  Keep secrets.
7.  Never give up on anybody.  Miracles happen every day.
8.  Always accept an outstretched hand.
9.  Be brave. Even if you're not, pretend to be. No one can tell the difference.
10. Whistle.
11. Avoid sarcastic comments.
12. Choose your life's mate carefully. From this one decision will come 90% of all your happiness or misery.
13. Make it a habit to do nice things for people who will never find out.
14. Lend only those books you never care to see again.
15. Never deprive someone of hope; it may be all they have.
16. When playing games with children...let them win.
17. Give people a second chance, but not a third.
18. Be romantic.
19. Become the most positive and enthusiastic person you know.
20. Loosen up.  Relax. Except for rare life-and-death moments, nothing is as important as it first seems.
21. Don't allow the phone to interrupt important moments. It's there for our convenience, not the caller's.
22. Be a good loser.
23. Be a good winner.
24. Think twice before burdening a friend with a secret.
25. When somebody hugs you, let them be the first to let go.
26. Be modest. A lot was accomplished before you were born.
27. Keep it simple.
28. Beware of the person with nothing left to lose.
29. Don't burn bridges. You'll be surprised how many times you have to cross the same river.
30. Live your life so that your epitaph could read, 'No Regrets'.
31. Be bold and courageous. When you look back on life, you'll regret the things you didn't do, more than the things you did.
32. Never waste an opportunity to tell someone that you love them.
33. Remember that no one makes it alone. Have a grateful heart and be quick to acknowledge those who helped you.
34. Take charge of your attitude. Don't let someone else choose it for you.
35. Visit friends and relatives when they are in the hospital; you need only stay a few minutes.
36. Begin each day with some of your favorite music.
37. Once in a while, take the scenic route.
38. Send a lot of Valentine cards. Sign them, "Someone who thinks you're terrific!"
39. Answer the phone with enthusiasm and energy in your voice.
40. Keep  a note pad by the bed. Million-dollar ideas sometimes strike at 3 am.
41. Show respect for everyone who works for a living, regardless of how trivial their job.
42. Send your loved one some flowers. Think of a reason later.
43. Make someone's day by paying the toll for the person in the car behind you.
44. Become someone's hero.
45. Marry only for love.
46. Count your blessings.
47. Compliment the meal when you're a guest in someone's home.
48. Wave at the children on the school bus.
49. Remember that 80% of the success in any job is based on your ability to deal with people.
50. Don't expect life to be fair.

It's as if I REALLY wrote this....just ask my kids!!!!  :>)  Love you Fred and Rosie!!!!! - c

Sunday, September 11, 2011

Anti - PD1 is working???????

The trip to Tampa on Thursday was pretty easy. The traffic to Atlanta wasn't too bad, Brent only grabbed at the ceiling and stomped his special, invisible brakes a few times. No scanning was involved at security.  We shared a really delicious tapas dinner at Columbia.  Brent was even seated such that he could see the dancers (Ruthie and I had seen them before, but he hadn't) so it made it quite a fancy date. I had sangria and he tried their mojito...but his are much better!!!!

Up at the butt-crack of dawn again to make our 0700 visit to the research unit.  All the old peeps were still in place, a gentleman ahead of us jokingly said he felt the scale was reading incorrectly, so I told him, if there was an error, he could certainly blame Sam!!!  Who...was just the same...asking, "What's this on your arm, Helen?" "Well, Sam, that's a side effect of the treatment."  "Ewwwwhhhh!", Sam replied.  What can you say about Sam????  But, our luck held and there was Jackie...the wonder nurse!!!  She's just the best!  IV done, easy peasy, tons of lab drawn and off to see the Weber!

Once there, he was pleased with my scans and actually impressed (extremely) with my vitiligo. (Jackie had already told us that a few of the patients in my group were developing it and that..."It makes Dr. Weber very happy.  His bow tie actually starts to spin around, I think!") He said that "some" of the patients in my cohort had developed vitiligo and that it was "a very positive prognostic sign".  (This would be because, theoretically, if the T-cells are killing off the melanocytes that give color to your skin, they are also killing off the melanocytes that are nuts and are involved in melanoma.) He implied that mine was more than he expected on my back and it seemed that I was the only patient he has seen with significant vitiligo on the legs.  (He had his tech actually take pictures!!)  He went through the usual questions about activity and energy level.  When I told him that I now run 3 miles three times a week and do an "INSANITY" workout once a week...he just looked at Brent, puzzled.  "It's not really called 'insanity' is it?" The clinical nurse coordinator was there as well, and she just started laughing.  I told him, "Yes, it is!"  He asked, "But, what do you DO?"  As I tried to explain the cardio workout and the push-ups, he said, "You do as many as 100 push-ups?!!!"  "Well," I said, " in some of the work-outs...but only about 40 in a row."  Brent interjected..."And they aren't 'girl' push-ups either!"  Anyhow...after we got through all that, the bottom line was that he felt that I was doing really were most of my cohort, with no one currently enrolled having had a relapse in the past 6 months. He also said that there was a patient in the metastatic disease group who was experiencing vitiligo  with concomitant regression of many of her existing tumors.  SO......  He also said that he felt that this drug was showing great promise and that the drug company "really needs to get serious about it"!

The infusion went just fine and I got to sit in a chair!!!!!!!!  Brent didn't seem to grasp the wonder of this...but it is SO much more comfortable...and NO injections!!!!!!!!!!!...which certainly made things a lot less painful and the experience much more abbreviated!!!!

So much so, that Brent and I were able to get a much earlier flight!  We got to the airport at about 11:40.  I asked the man at the desk if it was possible to book seats on the 2:30 flight, rather than the 5pm flight we were scheduled for.  He said, "You can have seats on the noon flight. It's wide open."  I said, "No, I don't think we can make that one."  He said, "You can, if you run!"  With that, Brent takes off like a crazy the WRONG direction.  I yell at him to follow me and we're off....  We make it through security with only Brent being scanned.  He throws on his wee little shoes, not even tying them, and takes of like a bat out of hades....IN THE WRONG DIRECTION...AGAIN!!!! I get him turned around and we're off, like crazy people, to the gate as the big announcer in the sky is saying, "All passengers for the flight from Tampa to Atlanta should be boarded now!!!!"  B is sweating, we rush to the desk, the attendant takes our boarding passes (the other guy didn't bother to take the time to print new ones, just saying he would put us on that plane) and tells us, "Oh, you're for the 5pm flight."  Seriously, lady?????  We just ran up to you like maniacs at noon for the 5pm flight!!!!  We tell her we are listed for this one.  She punches around on her computer and sees that indeed we are and lets us board.  The flight is fine and we are seated together.  We get to Atlanta before 2pm and are able to shop at De Kalb Farmer's Market for stuff for us and Rose before we meet her around 5.  She gave us a great tour of some areas of the campus that were under construction last year, including one with a living rooftop garden where she gets to eat her lunch with a beautiful view of the Atlanta skyline.  It was fun and a little later we were off to dinner with her and one of her friends.  It was so good to have some extra time with her!!!

So...Friday felt great, with no horrible aching legs.  Although, I had persimmon mouth by the time we boarded the plane.  By Sat morning, though, there was no running, no arms and legs felt as though they weighed a zillion pounds a piece and my wrists, ankles and knees were really achy.  The fact that I had a bit of a cold with a sore throat and congestion from my Dalton critters didn't help.  Today, I feel a little better, but still really tired.  Did about with Brent, planting some cabbages, Brussel sprouts, and broccoli and a few herbs....trying to decide about work tomorrow.

It's a crazy be a lab rat...but since the poor little ratties with vitiligo lived and the ones without it did not...guess I'll take my white shining patches.  Here's to more anti - PD 1 in December!  - c

Saturday, September 3, 2011

Negative Scans!

Scans went pretty easily yesterday and more importantly were pronounced clear by Bent and the radiologist! (Didn't even have a sinus infection! Now, that's a milestone!!!)'s back to Tampa Thursday for the presumable infusion on Friday. Just finished a 3 mile run with B and Z. Doing much better with my training, thanks in large part to Rosie's efforts on her break. I've been doing 2-3 miles, three times a week and an insanity workout on Thursdays. I'm feeling stronger and plan to boost the miles soon. Not quite a year post melanoma...but almost!!!!
Who knew something negative could be so good?! - c