Friday, November 26, 2010

I am thankful for loyal friends and family....

In others, I admire intellect, enjoy those who make me laugh, am inspired by those who are artistic, am warmed by those with a state of grace, aspire to those filled with warmth and compassion, and appreciate the hard working. Yet, those who steal my heart and suffer my ever lasting devotion, are LOYAL. Cancer (and probably any other sort of adversity) can weed out those lacking in that attribute quicker than you can say, "Lions, tigers, and cancer! Oh, MY!" I have been hurt by the sudden disappearance of those that I thought were close. Yet, I have found strength and sustenance and shining loyalty in some I loved and some I thought I only knew as coworkers or acquaintances. Those true and loyal friends and family have become a gift beyond measure and have surpassed any relationships I have ever experienced before. These are the dear ones who I know, if called, will come, at any time, day or night, no questions asked, no explanation expected. They will support me, or anyone I ask them to, right then, and forever. They make me feel special. They have my back, even when I'm wrong, or grouchy, or happy, or weak, or sad. They are more than rocks, they are mountains! And once found, you realize, they are often not just your mountain, but mountains of strength and unwavering support to many. I feel truly blessed and loved and thankful, for all of you in my life. And there is one, even more loyal than the best, who thinks I'm pretty with dark circles under my eyes and tubes in places no tube should be, who sees me when I am at my worst and finds me precious still, who has been with me through thick (though he recently admitted that he found that very "weird"!!!) and thin (and sometimes even thinner) who is my champion and my hero. And because Vince says it best....this one's for you..........

Sometimes this old world gets to me
I sure can be a jerk
But you always see the best in me
God knows you've seen the worst
You know when to let me be
Pull yourself real close to me
How to take my breath away
You don't care who's right or wrong
I know whose side you're on
It's more than the love that we make
It's what you don't say
It's what you don't say
What you...don't say.

I love you, Bent. Much love and you all -c

Friday, November 19, 2010

Released from ENT

Saw my ENT today and he felt that I was healing very well and I am released from his care. He (as does Brent and my oncologist) thinks that it is possible that the tumor on my tonsil was seeded there by tissue from the tumor in my lung that was left when the bronch was done. Yucky as that is, it would be preferable to having developed another metastatic tumor, but we shall never know. (The reason they think it is possible is because of the events of the bronch itself, the fact that a bit of tumor fell out of the bronchus during surgery when I had the lobectomy, and because the tumor of the tonsil was "on" the tonsil rather than within it.) He continues to recommend NO further node removal.

Anyhow, Brent and I did errands, groceries and such after the MD appt. Looking forward to playing in the dirt tomorrow with some fall planting.

May you all enjoy a beautiful autumn weekend - c

Thursday, November 18, 2010

More info....

Brent has been a busy bee as ever....Yesterday he spoke with docs in charge of melanoma research at Emory (in Atlanta) and at UAB (in Birmingham). Today he reached Dr. Weber in Tampa.

The first two were very nice, listened to my history, discussed general issues with Brent. Both advised that there were no current recommended adjunctive therapies and no trials that they were aware of for which I would fit. They did let him know about Dr. Weber in Tampa and another Doc in Knoxville and gave him info on how to reach them. The Doc from UAB said that he had taken part in a trial that had used only the high dose month of interferon and the trial had been discontinued because the patients had fared so poorly. He added that as more time passes, the more they realize that interferon does very little, if any, good. Both were very positive about the showing that Ipilimumab is demonstrating in its trials. The only sort of strange thing was is that they said it would be available in March rather than the Dec date that Brent had found. Both noted that I had rather "indolent" disease...basically since I'm still here. They both offered their assistance should Brent wish to call them later.

In speaking with Dr. Weber today, it appears that I fit a trial he is doing in Tampa. It is with another immune stimulator (monoclonal antibodies) combined with a vaccine. He thinks highly of ipilimumab, but thinks this drug combo is one step ahead of that. The people in the trial have to be Stage IV with all tumors resected. He wants to look at my MRI to make sure that he agrees that I have no tumor in my head. He also needed to know that I have the particular antigen that his drug and vaccine are geared to work on. Brent looked at my path stains and it appears that I have it. He says that the immune response side effects that are present with the ipilimumab (diarrhea, rash, thyroiditis, and changes in the pituitary....which he says he can take care of with steroids and go away when off the drug) are even less in this drug (anti-PD-1 human monoclonal antibody MDX-1106). The regimen would be IV infusion of the drug with a shot of the vaccine once a week on weeks 1, 3, 5, 7, 9, and 11. That cycle would be repeated every 12 weeks for 2 courses in the absence of disease progression or unacceptable toxicity. Patients may continue to recieve anti-PD-1 infusions every 12 weeks for up to 2 years in absence of same. So.....I guess we will find out more about that. My main question would be....If you think so highly of ipi, then why should I do this drug now, instead of waiting for ipi to become available?

The link at the top should get you to a video of Dr. Weber talking about a drug like ipi whose trials were stopped, a lot about ipi and its results, and some about anti-PD-1, if you're interested.

What to do???????????????? Love to all - c

Sunday, November 14, 2010

We begin again....

One of my favorite professors ever, was a geology prof I had at UTC. (Don't even ask why I took geology...but I really liked it!!) He would look out over the class after explaining some geologic scientific gobble-dee-gook, and ask, "Are you 'wis me? I think, no. We begin again!" It has become a family phrase.

And so it was this weekend. I put in 6 miles of a run/jog, 2 each day for the past 3 days. I had to stop and breathe about every quarter mile, but I did every step...even all the way to the driveway, Rosie!! It hurt less each day so that is something. Brent worry not. In fact, I think I made him proud. And, so tomorrow....

We begin again...... c

Saturday, November 13, 2010

Musical Musings...

Music has always been a part of me. Once as a little girl, when trying to memorize my multiplication tables, I burst into tears. When my mother asked what in the world was wrong with me, I told her I would never be able to learn them, "unless they are made into a song". For some reason, music has always been something I loved and could easily memorize and recognize. Music I've heard becomes engraved within somehow. Songs become part of my memory...certain songs are part of the trip to hospital clinicals in Pensacola as I drove to them at 5 in the morning...others are part of a beach trip I took with my sisters....just hearing a few notes...and I am right back there. Growing up, I was happy to listen to Air Supply with Ruth, Metallica with Kik, Momma's easy listening and show tunes, or Daddy's country stations with Kenny Rogers, Loretta Lynn, Tammy Wynette and all the others. Belting out something by Bon Jovi, Barbara Streisand, Madonna, Bonnie Rait, Adam Lambert, Pink, or from Porgy and Bess is great while cleaning the house, driving to work, rocking name it. Chilling with Wynton Marsalis, Diana Krall, or Harry Connick Jr. is just perfect to me. But, more than just enjoying music, I can't NOT hear it. Much to Rosie's initial dismay, I am incredibly likely to start singing and dancing to the music coming over the speakers at Bi-Lo. At this point, however, she has abandoned all hope (or perhaps embraced it?!) and is now likely to join me. At the movies, I am the musical director's girl. I drive Brent crazy talking about the songs and musicians I hear behind the show....John Travolta's performance may have been essential to Phenomenon but it would never have been the same without Jewel's cover of "Have a Little Faith in Me". GI Jane was made by Chrissie Hynde's vocals. When I watch Notting Hill, I hear nothing but Bill Withers and Elvis Costello. This is a long way round to let you know some verses that are ringing in my head these days.....

"Look, if you had one shot, one opportunity to seize everything you ever wanted, in one moment, would you capture it? Or just let it slip? Lose yourself in the music, the moment, you own it, you better never let it go. You only get one shot, do not miss your chance to blow. This opportunity comes once in a lifetime, YO!" Lose Yourself Eminem

"I got a short attention plan, can't sit around couch potato land. I wanna do all kinds of stuff, talking about it is not enough. I like my food with chili in. I like to laugh til it turns in. I wanna stare fear in the face. I wanna take it all the way. If you're gonna jump, then jump far, fly like a sky diver. If you're gonna be a singer, then you better be a rock star. If you're gonna be a driver, better drive a race car!" If you're gonna Natasha Bedingfield

"Yeah, it's been a ride....I guess I had to go to that place to get to this one. Now some of you might still be in that place. If you're trying to get out, just follow me. I'll get you there. I'm not afraid to take a stand. Everybody come take my hand. We'll walk this road together, through the storm, whatever weather, cold or warm. Just let you know that you're not alone. Holla if you feel you've been down the same road." Not Afraid Eminem

"Don't cry, you know the tears will do no good, so dry your eyes. Oh, they told you life is hard, it's misery from the start, it's dull, it's slow, it's painful. But, I tell you life is sweet is spite of the misery, there's so much more, be grateful. Well, who do you believe? Who will you listen to? Who will it be? 'Cause it's high time that you decide, in your own mind. Oh, they told you that life is long, be thankful when it's done, don't ask for more. Be grateful. But, I tell you life is short. Be thankful, because before you know it, it will be over. 'Cause life is sweet. And life is, oh, so very short. And, life is sweet." Life is Sweet Natalie Merchant

...and so it is. Love - c

Thursday, November 11, 2010

Oncology visit limbo.....

Well...the sort of no news and sort of still in limbo.

In the most straight forward version...the standard recommendations for me at this time remain the nothing except observe interferon, one month of high dose (which my oncologist said is almost always cut short because no one can withstand the side effects) followed by eleven months of low dose. The odds for success remain the same except for the fact that over the years in which I've been dealing with this they have found that the people who do respond the best to interferon have my tumor typing....for whatever that's worth. They are not certain if it is really due to the drug's effects or just that the folks with my type just do better than others anyway. I did ask about the pegalated (sp?) version of interferon, which supposedly has fewer side effects and my MD reported that in her experience it was no better tolerated.

After that, the other most clear portion of the visit was the fact that since she can palpate no cervical nodes in my neck, she doesn't feel that a resection of additional nodes is needed at this time. She thinks that if they had melanoma in them they would not only be enlarged currently, but growing.

Now for the more complicated stuff, I have to back up a step. Melanoma tumors are bad news in and of themselves. But what makes melanoma (and renal cell carcinoma, it just so happens) so difficult to treat is that prior to tumor development, it actually changes the host's immune response in order to make a nice living area for itself. They have done studies on sentinel nodes (the nodes nearest the tumor to which primary lymph flow is going) that are negative for any melanoma cells, yet, they are filled with suppressor immune cells that block the activation of other immune cells and allow the melanoma to grow unchecked by the host's own natural defense. Therefore, killing off the melanoma cells alone with typical radiation and chemo doesn't do very much good. Immune therapy has always been thought to be the way to the cure. That is why interferon is used. It doesn't kill the tumors. But it is supposed to kick start the immune system. Ipilimumab is one step better because it does kill the suppressed immune cells while jump starting the immune response. In this same direction, vaccine therapy has long been something that researchers felt could be successful as a treatment as well. However, though many have been tried in various trials, none have demonstrated beneficial results.

Back to today: At about the same point Brent and the onc started talking about wanting to find a vaccine trial for me and go off on that tangent. I say, whoa've never been that excited about vaccines for me before. An obvious reason for this, is that there haven't been any that were very promising in the past and there are several that are showing some good results in trials at this time. But, the more interesting thing is that BOTH my docs came to the same conclusion about me, without discussing it with each other until today. That is: they both see the possibility that I am providing a pretty good immune response against melanoma on my own. (I know! This is a little strange to hear, having just had my third surgical procedure in less than 6 months!!!) First, they think it is possible that the swelling and redness in my throat was my own reaction against the tumor that was growing on my tonsil. Of course this can't be proven, it could have been a coincidental virus, infection, reaction the the injected meds with the scans...but they are more inclined to believe it was an immune response. Secondly, there are now three different radiologists who have described the place in the back of my head as a treated met. (We know they don't read each other's notes, else wise they would know it isn't!! The big dummies!!!) But, Brent and my oncologist's point is that it may in fact be a met, that my own immune response took care of. And lastly, my oncologist said that since I have been in her care, she has gained other patients who...and here her face got a funny look and she took a different tact...saying....other patients whose disease had taken a different type of progression. I think that was all code for patients who were diagnosed less long than myself who have already died and/or are doing very poorly. So....all this equals that they both feel I am a really good candidate for vaccine therapy.

Problem: Vaccines are only available in trials. This means...some folks get the vaccine....some folks get water (preferable, I have to say to some of the crap they can give you). Trials have admission rules. Some only want people with measurable disease. Not me. I don't have any. Some want only those with a history of a lesion and a positive node. Not me. I had mets. SO.....

The oncologist had already put in calls to the oncologist at Vandy (He's in Australia at the moment.) and another at the Sarah Cannon Cancer Center in Nashville. Both are to get back with her by Mon or Tues and Brent will reach her on Wed. She wants to ask them about my options generally and about vaccine trials for which I might fit specifically. Brent already knows about one that is open in Tampa, another in San Fran, and another at Vandy.

Brent also laid out his big picture plan about taking Temodar now, so that should it fail I would qualify for Ipilimumab once it is out (It is to be available 12/25/10 with the caveat that it is only available to those who have failed a prior course of therapy.) She said that wasn't a bad idea and that we could do that, although she clearly didn't think that Temodar did much good. She didn't feel it was that toxic either...though I find that no matter how well intentioned, the side effects are never as bad for those telling you about them as they are for the person experiencing them. At any rate, the end of that was that she didn't want to do that just now, but wanted to see what she could find out about things from other folks and go from there.

If your eyes have not glazed over yet, thanks for listening. Will keep you posted on what we learn next week. Brent is off with me tomorrow and we plan to just play and laze about! Love to each of you - c

Sunday, November 7, 2010

Craziness again....

Like I've already reported, I had my brain MRI and whole body PET scan on Monday the 25th of October. During the scan, while on the table, my throat began to feel weird and swollen. I think, "Great, if I am having an allergic reaction to the mess they are injecting me with, things are going to get really complicated!" At any rate, the scans are completed, I do a few errands. My throat continues to bother me. Once home, I looked at my throat and sure enough, the entire area was inflamed and on the right side there is a black lump partially visible behind the right tonsillar pillar. (This is the structure on either side of the back of the mouth that seem to be the stage curtains to the back of the throat with the palate being the stage roof and the uvula hanging down in the center. Tonsils are lymphatic tissue that develop in childhood and may become infected with viruses or strep. They may be removed if those infections are repeated or if the tonsils become swollen so as to obstruct sleep and breathing. Otherwise, at puberty, they take on the texture of a prune or raisin and involute, shrinking back behind the tonsillar pillar.) At any rate, black and growing is not normal. I show Brent when he gets home and he is not happy. He speaks with an ENT friend on Tues and they place me on Amoxicillin and hydrogen peroxide/water gargles and I am to see him at the end of the week if things do not improve. The erythema gets better and I don't know if it is the decrease in swelling of the surrounding tissue or the increasing size of the lesion, but the lesion becomes more prominent, causing me increasing difficulty with speaking or swallowing. I see Dr. Barnes on Friday morning. He takes a look and says it needs to be removed. So.....Sat am (10/30) it is, along with appropriate margins for the size of lesion (1.9 cm X 0.7 cm X 0.8 cm growing on a stalk attached to the right tonsil). Since it was the weekend, no path results were available until Tues, when as suspected by all, the results showed melanoma in the tumor, but clear margins in the surrounding tissue that was removed.

This week has been interesting to say the least, having to tell all my friends and family after reporting the all clear on both scans as well as dealing with the hole in my throat. But as ever....all of you have come through for me with immense support and love.

I am getting better and will be seeing my oncologist on Thursday of this week to see what advice she has at this time. I will probably follow-up with the neuro folks and the ENT on Friday of next week.

Meanwhile, Bent got to have a birthday as did Tammy and Kik! SO....Thanksgiving has got to be a big ole celebration all around!!!! Love to you all - c