The Process

We made it to the hospital in Tampa at 7:15 as ordered. Valets whisked our car away and we went up to Dr. Weber's office. After a brief wait we were taken back by a "nurse", vital signs were done, and we were placed in a room, waiting on the doctor to do a physical. (Went from docs who never do real physicals to one who is zealous about it!!!) After the exam Weber reiterated things we already knew about the study, including the risks and hopeful benefits, bit the bullet and told me that I could die, saying he didn't think I would, but he had to tell me that it was possible. We were not surprised, he has to tell people that, I was glad he just said it straight out and moved on.

Off to the floor that does the lab stuff. Met by two women: an older one with incredible sagging boobs which she used to prop on and a younger Hispanic one. The older was in charge (at least in her mind) though mainly focused on telling anyone who would listen (including us) that she had gotten the good deal that day as her husband was having to take their dog to the vet and especially liked to describe the dog's propensity to retch when placed in a car. Then she had fun telling me that I needed to wear a gown so that it would be easier for me to use the bed pan while having the leukophoresis done. I thought, with a max time on the machine of 3 hours...not on your life sweet cheeks. So I asked if it was ok for me to go to the bathroom, in case a specimen was needed, before the procedure started. She barely paid attention and said, 'Oh, sure.' On my return, she informed me that she needed a specimen. I just looked at her and told her that that would have to wait. The younger, who sort of seemed in training or just under the other's thumb, apologized for not having mentioned it prior to my bathroom trip, and said I could collect it after the process. Then, in bed and the older woman starts looking for veins (of which there are a zillion) on my left arm. She picks an odd one on the anterior aspect of my forearm, a strange place to choose to me, and starts scrubbing with some mumbling about placing it there so that I would be more free to move that arm, since the other could not be moved once that line was started. I'm thinking that would be more easily accomplished if she placed it in my hand, but whatever.... They have to use an 18 gauge needle so as not to damage the cells they are collecting and returning, and Brent, who was watching, reported that despite all her authority, she hit the vein she chose and proceeded to go right through it, then berated the vein for "blowing" (a term we medical people use to refer to a vein which pops when we try to run fluids through it...not when we poke a hole in it on the other side!!!) Anyhow, she gets the line on her second attempt. The younger lady starts the one on my right. Bossy woman objects to her first vein choice and I'm thinking, 'Go for the one you want, sister. Your advisor misses her picks!' But the younger lady had things going in one stick. Meanwhile, saggy booby lady, manages to berate nurse practitioners and doctors in rapid succession (both as folks not able to hold a candle to her skills and authority). When we gradually let her in on our professions, so as not to have her step any deeper into her pile, she is unfazed and says we were very quiet and not as demanding as those sorts usually are. I replied that I'd had lots of practice!

I had to be on the machine for 1 hour 15 minutes, which is pretty rapid. They will allow you to be on the machine for 3 hours, but check your sample of white cells at one hour to ascertain your rate of accrual. It's much like donating platelets. After getting rid of one of the IV's and giving them their specimen, we were off to the "research unit" where the medications are given.

We checked in at a reception desk and were given a little disk, beeper thing, like many restaurants use, which I found to be a bit disconcerting, but were called back within minutes. I discovered that since I am receiving vaccine injections as well as the anti-PD-1 infusion, I have to stay in a bed. I was looking forward to using the cushy recliner chairs...there are cubicles containing either a bed or recliner with a chair for a visitor. So, in the nurse comes for more vital signs and a tray, much like they use for jello shots in places that are much more fun and bouncy, filled with 6 carefully labeled syringes. Each contain 1 ml of what appears to be Elmer's glue.

She also brought an ice pack, for numbing purposes, that I am to apply to my leg. After she left, and I am freezing my leg, I tell Brent I don't want to use it, as it will only cause more tissue damage to freeze my skin. He just looks tired and tells me that I am much better at surgery...it's a wham bam situation with definite results. I'm thinking....what's so about that?!!!! Anyhow, I acquiesce to the ice. Later, the injections are given, in not what I would describe as a painless process. They hurt like a booger! I mention to the nurse that it does seem a bit inhumane since we add lidocaine to Rocephin (an antibiotic that really burns) injections and Emla cream (a topical numbing agent) is available for these very situations. She grins and asks, 'Are you a nurse?' 'Yes, and this is crazy!' She tells me that such recommendations are regularly brought to the table by the nurses, but Dr. Weber says 'the patients tolerate the injections ok with the ice.' Well, yeah. What other option do they have?!!!!! I'm going to have to have a talk with that man. Brent and Dr. Carr will surely remember the "talk" I had with them when I was taking care of a baby post abdominal surgery who had only benadryl ordered for pain. Yes, that was changed!!!!! Anyway, shots done. IV med given over 30 minutes and followed by 30 minutes more of plain IV fluid infused behind it. Next, 1 hour of observation with nothing happening, except vital signs taken every 15 minutes for the duration. Then, we were free to leave.

I did fine. No spasms, no fevers, no rashes. I felt tired over the next couple of days but probably no more tired than I would have been had I made the trip all the way to Tampa in a snow storm and not been given any medicines at all. My thigh was really sore at the injection sites for several days and two of the sites became red, and warm, as well as particularly tender.

But it is done. My next treatment is on Jan 14 and they will take place every other Friday until March 11 after which I presume I will be re-scaned and we will go from there. I will not have to have the leukophoresis repeated until the last visit of this session on the 11th.

A little late as an update....but there you have it! c

Bright and early

Just wondering....Why does everything in my life have to take place at the butt crack of dawn?

Here we go...........

We're here!

Drove down to Macon as planned yesterday. Got out of the subdivision just fine thanks to Brent's snow chains. Had to stop and take them off by the time we got to the main road as the roads had been cleared there and the chains didn't like that! VERY messy the whole way with the most snow and sleet falling south of Atlanta. Had a nice dinner at the hotel of black bean soup and cheese bread which we had packed for the trip. Heck! If we're having to drive, might as well make it a ROAD TRIP! Bent got me breakfast from the little self serve bar that La Quinta has and we were on the road again. Peach trees, plucked cotton fields, pecan orchards - all looking much colder than they'd like to be. And if anyone calls out the National Guard in search of ALL the inhabitants of Michigan, Ontario, Kentucky, Indiana, or Illinois - call and tell them that I know where they are...heading south on I-75! Traffic wasn't that bad, though more than I'd thought it would be. There is a stretch before Tampa that has more billboards than any length of road I've ever noted before composed of equal parts anti-abortion messages (some of which were very bizarre) and "love" toys/adult x-rated shop ads. A strange dichotomy I thought. Once in Tampa bill boards are still incredibly prominent but tend to feature plastic surgery, dental, and law firm ads! Just thought you'd like to know!

We drove straight to Tarpon Springs. A fun but touristy part of Tampa that was settled by Greek sponge fishermen. We did a little shopping, Brent got to speak a little Greek, and then we had a good meal. (I had Greek salad, roasted potatoes and shrimp, while Brent had what they call farmer's salad and roasted octopus.) Very nice!

We are now back at the same hotel we used on our last trip which is only a few miles from the hospital. Have to be there at 7:15. Better get some sleep. By the way, am posting via wifi on my new iPad that Brent and the kids got me for Christmas! How cool is that?

Much love - c

Merry Christmas!

So....awakened to 3 or so inches of snow, more falling, and 100's of flights being cancelled in Atlanta. After breakfast the kids are busy clearing the drive, Brent and our dear friend and neighbor, Les, are putting snow chains on the tires of Brent's car and I'm making a pot of soup for the kids in case of loss of power due to the icing that often follows snows up here. Fearing that our flight tomorrow will be cancelled anyway and the roads being worse in the am, Brent starts making plan number 9,010! Turns out Brent's work tonight (from 6p - 1am) gets cancelled since the manager doesn't think that nurses and front desk staff will be able to make it in, simplifying things some. In the end, he just cancels our flights himself, moves them to our next Tampa trip (for a one hundred dollar additional fee!), cancels our rental car, makes a hotel reservation in Macon and we will be on our way this evening. We plan to drive to Macon, spend the night, then on to Tampa tomorrow. We should get done in Tampa around noon to 3PM on Monday, so will probably drive about half way back that evening, and make our way back home on Tuesday. Obviously, I am not happy. I felt that all this was too invasive, requiring way too much time, energy, and money in the first place....so this is NOT the way I wanted this to go! So much for what I want I suppose.... Oh, well...enough belly aching. Got to go do the elliptical and get a shower so I can go down the Signal Mountain Slip and Slide!!!

Hope all of you are having Christmases that are much less eventful and psychotic!!! Love to all - c

FYI

Just thought you might be interested to know, that based on the lab work done while I was in Tampa, I do not have HIV, Hep B or C. My thyroid is working great, as is my gallbladder. My hemoglobin and albumin are excellent...proving that I have, in fact, been eating well!!! While coughing incessantly my WBC and CRP are perfect, showing no signs of an infection or inflammation. And my LDH (a tumor marker) is low normal despite a possible tumor in my head. My chest x-ray was pronounced normal, which actually gives me some pause, as I am missing a lobe, but there you have it.

Since resting hasn't been helping, I did the elliptical for 20 minutes this morning and lived!!!

Have a great weekend!

Let's get the party started!

On Wednesday, Brent finally got things set up, perhaps only by calling Dr. Weber's nurse, not the one I've been dealing with. Apparently she got the study nurse in gear who then called Brent back with our start date. I will have my first treatment, vaccines, and pre-study leukophoresis on Monday, Dec 27. Brent and I are flying down on Sunday so we can be ready for the 0730 start time. We have a direct flight from Atlanta both ways and will return Monday evening. I know Weber is giving me a chance here, but I can't honestly say that I am thrilled about it. This level of disruption, expense, time, pain, possible side effects...only looks good when weighed against death, someone digging in my brain, or someone screwing things into my skull in order to zap my brain!!! The second session will be on Friday, Jan. 14, and every other week after that for a total of 6 sessions. Then, if scans remain clear, I will repeat the process for another 3 months.

Picked up the Rose Bud from GT yesterday. She looks wonderful despite her recent study marathon and I'm sure she did very well on all her exams. Fred got his reports from UT and did great! I am proud of them both. It is fun to have them both at home for a while.

Enjoy your families, with love - c

Frustrated!

Rather frustrated with my nurse in Tampa! She said she would call on Monday with dates for my induction and lab intro into the study. Never did. By noon today, still no word, so I left a message. Around 4pm she called saying she had been busy with this and that and had finally made it through my "lengthy"records....oh well, suffer with melanoma for 7 years and you'll be happy if you have "lengthy" records. Let that pass. Then, she wants to know where my CT results are.

On the same CD as the MRI.
Oh?
Yes.
Well, I'll have to get the radiologists to review those.
Ok, take your time!

Then she calls back, where are the written reports?
On the same CD.
Oh?
Yes, but I can fax you a copy if you like.

So, I have Brent print that off and send it to her.
I really hope she gets it together tomorrow.

I have limited time....for the trial and in general! I have patients to reschedule, plane tickets to arrange and a fx@k*^g tumor in my head!!!!!!!!!! When I tell people I'll call them back....I CALL THEM BACK!

Oh, well.....such is life. Hope the rest of you had your phone calls returned, roads that weren't icy, and heads that aren't hiding tumors. Love - c

Melanoma Neverland....

Apart from multiple extremely smelly people on the planes, the trip to and from Tampa was no problem. It wasn't 'sunny' Florida, being rather cloudy and dreary, but it was much warmer than the weather here. Moffitt Cancer Center is a huge facility, a fact that is both reassuring and disconcerting all at once. Was processed efficiently. Free valet parking. (Way too many folks with cancer....don't you think?) Dr. Weber was very timely, very frank, and much like his video personality. Completed a full physical...YUCK!!...not that I would do any differently were I in his position! Dr. Weber was fully aware of all my history. (Brent had overnighted all my records, scans, etc. a couple of days prior per Weber's request, but I didn't know if they would really be reviewed before my arrival or not.) He had some questions about the tonsil issue. What had it felt like? How had I found it? Took a complete history. Then, he told us that I looked like I would be a great candidate for his trial once I repeated the scans and got the remaining lab that was needed. Brent and I began to look confused since I had had the needed lab drawn the week prior on Thurs and the MRI and CT scans done on the Friday prior. We told him that was the case and also informed him of the met that was reported on the MRI. He immediately got someone working on finding the results of the lab work and an hour later it turns out that I have the antigen as well as the subtype needed for the study. He sent someone over to his office to look for the missing CD when Brent insisted that the CD had been included in the packet he sent and it was determined that the last CD just didn't get loaded on the computer for review.

During the wait for all of this, Weber sits down and just starts going over my options....all of them. Other drugs.....none. They are either not available or ineffective. Talks about Timadar and whole brain radiation. Dismisses it as not effective. Ipi....good but not yet available. Other studies....I don't qualify....either they don't want anything present in the brain at all OR they want measurable disease and 3mm is not large enough to consider "measurable". I would have to wait for it to grow and then still may not qualify since researchers don't typically want folks with brain mets in their studies at all. I could do stereotactic radiation as I did before and then enter his study 6 months or so later. That is so because (and this was the case with my scans) when follow up scans are done, it takes 6-9 months for the area to quit lighting up. Until it does, they can't say for sure that all the tumor is gone and he wouldn't be able to let me in until then. During that time, he doesn't like the fact that I would go untreated. Because in order to get into the study, I not only have to get rid of that lesion, I can't grow another. He tells us that I am in Melanoma Neverland. Meaning, that until I get less, or more, disease.....I can't get any drugs that might prevent the development of additional disease. He says that if it were him, and at first I don't know if he means himself as the patient or himself advising me....though it becomes clear that he means if he were in my position....he would have the lesion surgically removed. That way, it is gone. Within 4 weeks I could be in the study, getting drugs that might prevent further tumor growth. At about that time, someone advises him that the CD has been found and loaded. He says we can go if we need to catch our flight and he'll give us a call...but Brent tells him that we are here to get all the information possible and that our flight is not until Sat. He tells us to sit tight and that he is going to call a neuro friend of his to look at the scans as well as radiologists to take a look. Off he goes....

Weber pops back in to tell us that he doesn't really know that it is a met at all. He is going to get the other folks to give their opinion.

On his return, he says that the other radiologist/neuro people couldn't definitively say that the lesion in question was a met. He tells us that to his mind, I have "minimal residual disease" and therefore qualify for his study should I wish to participate in it. I figure the conversation went something like this: Weber = Do you think this lesion is a met? Neuro/radiologist = Well, given her history, probably. Weber = Yes, but, on its own. Can you tell me that this is definitely a met? Neuro/radiologist = Well, not definitely.

Bottom line = I think it is a met. I also think that Weber is trying to cut me a break. I can take care of this lesion...it's hell....but I can do it. The problem is, the rest of me, continues on....untreated. Not that Weber's drug combo is perfect. So far, it helps only about 1/3 of the patients who have had it. The side effects are less severe than those with ipi....at least in the small population who have taken it. And Weber believes, that like ipi, it has effects on brain mets. However, he is very straight forward....again disconcerting....but for me....it is what I prefer. He is very frank in that I am taking a risk with his study. He thinks the drug will help me....but it is a study. He can't be sure. That is why he is doing the study. He thinks that I will be better off with treatment for my lesion, the rest of my brain, and the rest of me in general. But he can't be sure. I asked, given the question mark in my brain, would he scan me sooner than the scans incorporated in the study at the 3 month point. He is very clear that he would not. If they were to scan me in say, 6 weeks, and the lesion in my brain is larger, then I am off the study....with no better options than I have today, and no chance of medication. Yet, it is a risk because in 3 months, my lesion could grow....but as I see it....I would be just where I am now....though out time, energy, money, with some side effects, and with a bigger lesion. But....still...with a lesion in my brain that I could have irradiated or surgically removed.

Also, somewhere in all this...we find out that if this treatment fails (and I grow additional lesions) I could still receive ipi. However, if I were to take ipi first, I would not get to take PD-1 and the vaccine (even if, in the years to come, they are found to be a remarkable cure!). The FDA has, in its wisdom, decided that the cumulative effects would be too great. However, that makes no sense to me (and especially to Weber) because to agree with that you would have to redo all mathematical laws, not to mention common sense, that additive effects can occur in BOTH directions! Bottom line, I can do ipi later if needed, but if I do ipi now, I will never have PD-1 as an option.

So what to do? I agreed. Partly because I can withdraw at any time. Partly because it was 5pm and I needed a CXR, lab, and an EKG to be completed before acceptance and if I waited to think on it over the weekend...I would still have to get that done and read, etc, etc. And....I am in a real time crunch. I have to start treatment within 28 days of my last scan (and at this point I am already down to 21 days) if I am going to do this and Christmas and New Year's (i.e. office is closed on 2 Fridays) fall within that time frame. And, NOBODY wants another scan of my head done, if I am going to participate in this study!!!!! After that I was whisked away, and a chest x-ray, EKG, and labs were done all within 20-30 minutes. The nurse in charge of the study is to call me Monday with my start date.

Because on your first and last session, you have to have leukophoresis completed (a process where 2 IV's are started and blood is withdrawn from one, sent to a machine to withdraw white blood cells then returned to you in the other IV) so that they can tell if the meds jump started your white cells like they hope, it requires scheduling that as well as your treatment. Therefore, what with the holiday issues, it is not clear what day they could get my treatments started. However, after I get situated and the holidays are past, I will be able to have my treatments on Fridays, so I am glad about that.

In any other world, this sucks. However, in melanoma world, when it is compared to being dead, someone digging around in your brain, or have things drilled into your skull...this looks pretty do-able! As Brent put it, we are in Melanoma Neverland, but this may be a door out.

Hot tip on the next Times best seller....

Thanks to my incredible (read: wonderfully insane) and supportive friends, I have the name of the next hot ticket in the world of books. When telling of my difficulties of living with a man completely obsessed with me and my melanoma (In most ways it's the most fantastic life ever...I mean, my lunch is packed and placed in my car with a special note, EVERYDAY, and dogs are walked, and fresh flowers are on the table, and the kitchen is cleaned, and groceries....lots of groceries....are supplied, and I am petted....well, there's more, but you get the idea!) and how large chunks of time are spent researching the blasted disease on the computer until I say, "ENOUGH!!!!"; she starts laughing hysterically and says, "You know, most women would hear the click of the computer keys in the night and think..."Oh, no! He's up searching for porn!" "But, for you, no, he's just reading about melanoma!" And then, another friend sends such a sweet and psycho note (in just the way that I love) telling me that I WILL kick this "Cancer Bitch's" ass, because of course, it has to be a woman. I mean, no man, would have this kind of persistence and tenacity! So with all that....drum roll please....the new, soon to be released, Times best seller is: MELANOMA PORN AND THE CANCER BITCH! You heard it here first.

I think I could sell about 50 copies. :>)

Anyhow, the obsessed one and I are off to Tampa tomorrow afternoon. Today we were sent confirmation of our appt around noon on Friday. So, we'll see what Dr. Weber has to say. At this point, I would just like a recommendation of what would be best to do....whatever that is.

We'll be back on Sat. Will keep you posted. Much love - c

Well, that sucks!!!!

Got the official read of the brain MRI today and there is another met, 3 mm, high right parietal, at the junction between the white and grey matter. Brent was adamant that it was there on the October films (though the current reader says it wasn't) but on Brent's closer inspection it does seem to have grown. So.....if this is the case I will not be a candidate for the PD-1/vaccine trial in Tampa, at least not at this time. I suppose that I could have it irradiated, and then, if 3 months later, it appears to have been taken care of and nothing else has developed, I could pursue the trial again. But....that's a lot of ifs and I don't know how long they will continue enrolling folks in this particular trial.

So....in his distress today....Brent began looking for other options. Found a newly posted trial for the second BRAF inhibitor (the one that has an effect on brain mets) for which patients with treated and untreated brain mets are eligible. (Hey, look at me....I can do this trial with BOTH arms!!!) He called the pharm company. They didn't know much. Gave him another number. He saw that is was a Tampa number, due to the area code. Called that. Ended up talking to Dr. Weber's nurse!! (Isn't it a wonderful, small, melanoma world????) It seems that he may be running this trial as well. She didn't know too much. Said it was starting up in Feb. We would have to talk to Dr. Weber. He hasn't called back yet. Will have to check with him, hopefully tomorrow, to see if it is worth our time to go down to see him Thurs.

Don't know what we'll be doing. Told the kids. Such great news to hear during finals....or just anytime! They are amazing. So bright. So strong. My magnum opus. Love you my little lebchukens.

But....Fred said it best...."Well, that sucks."
Love you all. Will keep you posted - c

I'm sick...

...of: being sick, thinking about being sick, planning to be sick, and...you get the idea. I think I need of big dose of hypochondriasis. Brent would be so pleased.

Have a great Monday! c

?Perguntas?

I have many questions for Dr. Weber.....feel free to add yours....

When did your PD-1/vaccine trial begin?

How many patients are currently enrolled? How many do you plan to enroll?

What side effects are you seeing in your current patients?

What side effects do you expect to see as these and other patients continue the trial?

What positive results are you seeing currently?

What positive results do you expect and how do they compare to the results of your study of Ipi?

Why should I take these medications, rather than wait for Ipi as it is coming on the market in March?

What days are available for the infusion/vaccine therapy?

How long does the entire process take?

How long must/should I stay in your facility (in Tampa) after the treatment?

When do side effects begin....during the infusion? after the infusion? how long after the infusion? Are side effects worse at the beginning? Do they become worse as you progress through the doses? What is the treatment for side effects? Who pays for the treatment of side effects?

When do you expect the next scans? Who pays for those scans?

What treatment would you recommend for your wife?

What would you choose for yourself, if you had had melanoma for 7 years, with 2 skin lesions, a positive node, lung metastasis treated with a lobectomy, a probable brain met treated with stereotactic radiation, and 6 months later a melanoma tumor on your right tonsil removed 1 month ago?

Tampa here we come?

Brent has been in touch with the doctor running the PD-1/vaccine trial in Tampa over the past bit. Dr. Weber looked at my October scans and agreed that they were melanoma free. He did however, need an additional lab test to determine that I was the appropriate subtype of the antigen we already know I have and needed another set of scans so that they would also prove that they were melanoma free within the required timeframe, should I choose to participate in his trial. So...Thurs I had the blood drawn. That result should be back this week, although when he questioned Brent about my ethnicity, he said that those with my German/Irish background had a 90% chance of having the required subtype and didn't seem too worried about it. (Of course, he doesn't have melanoma, so that's easy!!) Friday, I had a brain MRI and neck, chest, abd, and pelvic CT Scan. The CT's have been read as demonstrating NO melanoma. The MRI is still officially un-read, though Brent has perused all the pics and reports them unchanged. So, I figure that's a pretty accurate read! Either way, the group in Tampa will have the last word, as they will overread them anyway. I still don't know for sure that I will be accepted into the study, nor am I certain that I wish to participate in it. But, Brent and I will be flying down to Tampa Thursday afternoon for a Friday appointment with the big man himself. I guess he will have to make his decisions and I will have to make mine. I have many questions for him regarding PD-1, Ipi, as well as particulars of the trial itself. So, I will just have to see what happens. Will keep you posted.

Had a great weekend. Ruthie came up on Friday after my scans and we got to play and rest together. She has made it back home to Alabama safe and sound, but it was so nice to get to spend time with her.

Back to work for a few days and then off for my winter get-a-way to the Sunshine State!!! ;>)