exvapi
- A Long Rant
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exvapi- July 1st, 17:10
Removed by request
- Words of Wisdom
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- exvapi
- July 1st, 13:51
Do not, repeat, DO NOT miss the lower part of your legs with the sun screen spray and then spend the day on the beach in Southeastern NC.
I am normally very careful about this, but I must have been careless this time.
Ouch.
- Trip to Duke Medical
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- exvapi
- June 24th, 10:34
Almost a 3 hour drive.
Nice folks, Doc was not in a hurry. We talked about this and that and what can be done, what might be done, and what may be coming that could maybe be done.
What can be done - nothing.
What might be done - add meds that treat the symptoms, if they start.
What may be coming - a drug trial with RAD001 and some other med. In fall, maybe.
I'm going to Disney World and not worry about it.
- Update
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- exvapi
- June 22nd, 19:52
Drove 600 + miles Saturday to do the granddaughter transfer. My son was working so Grandmother and Grandfather did the run. Grandmother needed to be back on Sunday (one just can't miss your beach fix for the week), so we did the up and back in one day. Would rather not do that again.
Off to Duke tomorrow. I wonder if they have anything.
- Medical Records
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- exvapi
- June 10th, 8:56
Talked to a very nice person at Duke about getting them the records. She was of the same opion as myself, they only need the stuff they need, not "all" of it.
She offered to contact NIH and UPMC, talk to them about what was what and get sent from them to her what they needed.
In this case, I love being out of the loop.
I'll still take the two binders when I go for the appoinment.
- New Start at Duke
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- exvapi
- June 9th, 10:19
I have an appointment at Duke University on the 23d.
They said to fax "all" of my medical records.
They are kidding, I hope.
Currenty it takes two 4 inch binders to hold them.
- More Cancer News
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- exvapi
- June 4th, 14:41
I received this e-mail from the head of oncology at the National Cancer Institute:"Sorry for the delay but Sunitinib is an oral pill. It is different from Sandostatin. It is usally given for renal cell cancer or liver cancer but is available to try. Because I have nothing to offer you for treatments, it would be better to have an independent oncologist follow you for this. That way if trials open other places you will be able to get to them. Most people once in our system do not want to go back to what I call the “real world”. In actuality, it is not that bad because they can do more “standard” things than we can. Hope you are well otherwise. I know you are not probably happy without a set in stone plan. I will keep my eyes and ears open for you…."
So, the NIH/National Cancer Institute has nothing for me.
My booze intake is going up and I am no longer going to care about the number of cigars I smoke.
- Well this just sucks
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- exvapi
- June 3rd, 16:15
depressed
I received this e-mail from the University of Pittsburgh today.
"Hi. I found out this afternoon that the protocol we were looking into for you has been closed. Dr. Pingpank would like you to have a repeat CT scan and then come for a visit so that we can discuss what to do next. I can set you up for a scan here in the morning before a clinic appointment or I can have you get a CT at home and then bring the images with you when you come here. Let me know what you think"
Now the protocol was not open yet on April 2, so how can it be closed on June 3.
With no other drug showing any promise and the surgical procedure not possible for me, I guess I'm f**ked.
Hard not to be depressed.
- Cancer update
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- exvapi
- June 1st, 16:46
cranky
Well, the Doc at NIH was sorry the drug trial had not started and suggested I have my local oncologist start Sunitinib as it had shown some success and had been approved by the FDA for use.
The local oncologist said he didn't know why I would want to take Sunitinib as he had read nothing to show him it worked.
The University of Pittsburg still can't get the RAD001 trial off the ground.
NIH has dropped me from follow up as I have exceeded the IHP study criteria (I'm still alive), but will keep me in mind if they see something.
I'm not happy.
- Neuoendocrine Cancer, it's official
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- exvapi
- May 20th, 13:14
The pathologists at UPMC agree with the pathologists at NIH, I have neuroendocrine cancer. Good, I've know this for about 5 years now.
Now that everybody agrees with what I've got, and that the new RAD001 drug trial is for neuroemdocrine tumors other than pancreatic neuroendocrine cancer (It seems to work with pancreatic neuroendocrine cancer, so it should work on the other ones) can we get on with starting this trial so I can stop being so depressed?
Please
- Best Plan I got
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- exvapi
- May 19th, 21:26
Based on what I know now, there is nothing that can or will be done to keep the disease from progressing. The drug trial may happen, but I'm not seeing it.
Once I get sick enough, I might be able to talk a surgeon into trying to fix the hepatic artery and sever the auxiliary blood supply so that the PHP treatment can be done. By the time I get sick enough to get a surgeon to take the risk of trying this, I might be too sick to survive the procedure and the cancer may be all over my body so killing it in the liver may be a useless exercise anyway.
So, I'm planning on going to Disney World in September. My 2010 plans may not happen so I'll just work on 2009 for now.
- Cancer Summary and update
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- exvapi
- May 17th, 16:02
- angry
The appointment with the Dr.’s of UPMC on April 2 went well. Both Doctors were sure that I would be included in the new drug trial that would start in 6 to 8 weeks. All that was necessary was examination of the slides to determine that I, in fact, have neuroendocrine cancer. Seems the NIH pathologist wrote "neuroendoctine like" and the "like" is a fly in the ointment.
They also ordered Octreotide Acetate injections.
The Radiation Oncologist of NIH contacted a local radiation oncologist and I have almost completed a 14 dose round of radiation on the hip bone.
After a month with no contact from UPMC, I started calling and sending e-mails to their program manager with no response, so this week I called one of th Doc's PA and she offered to find out what was happening.
She called on Friday and it seems my slides have made it from NIH to UPMC. The UPMC pathologists have not yet determined that they are, in fact, neuroendocrine, but they do have them.
On a less positive note, she found that the drug trial will be run by a different medical oncologist who I haven’t seen, starting at some unknown date in the future, with entry criteria that are yet to be determined.
Based on that information, I am somewhat at sea as to what to do going forward. I like a plan, good plan, bad plan, only plan I got, but no plan does not work well with my mental state and right now, with the drug trial so up in the air, I have no plan.
This has made me very angry over the last several days.
- Radiation Day 9
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- exvapi
- May 9th, 11:53
Well, I was told this could sap my energy. Had not noticed until today.
Walked out to get the paper and wondered if I had the energy to get back to the house.
Nap time
- Radiation Day Two
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- exvapi
- May 1st, 19:26
Went, came home, mowed the lawn.
None of yesterday's wiped out feeling.
On the to weekend and the beach.
- Radiation Day One
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- exvapi
- April 30th, 16:53
Felt nothing, the whole thing took all of 5 minutes.
After I got on the table, the nice, young, pretty women were aligning my body to the aiming points. As they were at it, one asked if it was OK with me if they unbuttoned my pants and pulled them down a little. Men of my age can suffer stroke in situations lie that.
Went to my son's work with his mother and sister, taking cupcakes and birthday balloons.
Came home and could not stay awake. Slept for three hours on the couch. So much for the afternoon walk.
- Dry Run
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- exvapi
- April 29th, 16:43
Well, all the tattoos are aiming points.
The dry run places an X-ray plate on the opposite side of me from the emitter. The Doc reviews the film to insure all the previous is right to align the x-ray beam on the spot. And tomorrow it real, with real energy levels. For 15 days, with the weekends off.
I supposed to notice nothing, but I hope I notice the pain in the hip goes away since that is the point of this exercise.
- Update
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- exvapi
- April 28th, 12:57
I now have three small tattoos. One on each side of my hip and one sort of in the middle of my abdomen. The side two and index marks to align me on the table in the same spot and I assume the one in the middle is the target. I have a run through in the real treatment room, without real radiation tomorrow, and if that pleases folks, real treatments start the next day. I also have a fiberglass upper body cast that I get to lay in each time to insure my arms, head, etc. all are in the same place every time.
The monthly injections started yesterday. Glad it's only once a month cause it's a real hurtful thing. Better tham three times a day, but damn it was not fun.
Grand daughter is transferred back to NY for a month. I'm sorry she's gone, but then, a two year old every day, all day is hard on an old man.
Did I mention I'm going to Disney World?
- Stimulus Package
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- exvapi
- April 23rd, 14:43
Well, since I have a terminal illness, the SSA assumes I am disabled and send me a check every month. This has been going on now for almost 5 years and I wonder when they are going to ask why I'm not dead yet, but I digress.
Today I received a notice that the Stimulus Package has $250 dollars for each and every SSA payee, no matter what kind of payment that they receive. They also caution that if the money is not spent in the next 9 months it will count toward the base assets for those on SSI.
So, I can think of know better way to spend it than purchasing an optic for my new AR.
Any suggestions?
- heart stress stest
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- exvapi
- April 21st, 17:00
Well, reached down to pick up some trash in the new pine straw.
Almost picked up a cotton mouth instead.
I have no doubts I have a good heart.
- Radiation Oncology (part 2) and Disney World
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- exvapi
- April 21st, 9:01
Doesn't seem to be a big deal to zap the hip.
I go back on Monday for a "simulation". It's a dress rehearsal in slow motion of the treatments without using the x-rays. This gets all the angles figured out, and the body position correct without having everyone wearing lead suits and stuff.
Then 14 days of one treatment a day. Doc says there should not be any ugly side effects but then again, and then he lists all the potential ones.
Doc doesn't think the cancer will return to this spot, but, since it's neuro, it will be back in some bone somewhere someday. And we will zap it when it does. Wack-a-Mole.
On another subject, made reservations for 6 nights at Disney World in Sepember. They are running a special that includes the meal plan if you book for 6 nights during August and Sepember. Haven't been in quite a few years and this time my wife and I will not have kids. First time since our honey moon, 25 years ago this June.
