Chemo Starting

I went back to MUSC after the Duke debacle, and asked what was our next best alternative was. We are going to unfortunately have to go the traditional Chomotherapy route. Hard part about this is that my type of cancer is so rare they have little or no information on the success rate of this type of treatment.
This will be starting Monday June 4th.
The Chemo I will be taking is actually multiple medicines. We will start by doing Sandostatin shots again which is once a month injection in the hip (hurts like hell for about 3 days). Then we will be using the same Chemo medicine they have used for 30 years. It is called Streptozocin. It will be given intravenously 5 days a week for 1 out of 4 weeks. Next is Adriamycin, which is given intravenously 1 day a month. Along with these medicines I will get some heavy doses of anti-neusea medicine before the IV drips.
So on day 1 of this, I will have quite the little cocktail of medicine. 1 shot in the butt of Sandostatin, several anti-nausea medicines, an IV drip of Streptozocin, and an IV drip of Adramycin. Also all my regular prescription schedule will continue. That is about a dozen different types of medicines going into the system on that day. I am sure that hilarious results are in the works, sounds like a big powder keg waiting for a spark.
As you can imagine, the stereotypical expected side effects are all included with this treatment. Weight loss, nausea, vomiting, hair loss, low blood counts, kidney damage, lowering of blood sugar, mouth sores, stomach ulcers, heart damage, and of course extreme fatigue.
This is the medicine regimen I have been trying to avoid ever since my diagnosis, 4 years ago. But now it is unavoidable. All the easy (although I had a really hard time with some of them) treatments, have been exhausted and do not work for my situation. I am only left with the brutal treatment.
Another mental blow or milestone along this journey, is the admittance that I need to have access to a wheelchair. I am currently shopping around to try to get a lightweight one that we can just fold up into the trunk of the car. Sometimes the journey inside stores or even at the pharmacy is just unbearable on a bad day. Now that I have the Chemo treatment coming I know that the exhaustion will only get worse. So I have to byte the sour apple and admit I need a wheelchair.
I am considering bumper stickers for it now. I have narrowed it down to a short list.
My front runner is "Signal Broken: Watch for Finger",
close behind that is "My Other Car is an X-Wing Fighter",
I thought this one might be a nice ice breaker "I'm not a gynecologist, but I'll take a look".
I do not think Cindy will go for that one though.
Please send your submissions for possible bumper stickers through the blog post a reply section. Maybe we can have a vote for the best submission and I will post the results.
I have to send a big THANK YOU to Cindy's friends at Blackbaud. They have arranged for a landscaping place to come by and cut the grass all through June, July and August, also for someone to do a one time house cleaning and even got Cindy a massage appointment. So that was a wonderful surprise and will take a huge burden off of her this summer with the lawn. I have been forbidden by her to cut the grass. So it was all on her to do. I really appreciate it!
That's all the updates for now.
I have a ultrasound on my heart along with a ECG and one last appointment on Friday before starting the Chemo treatment Monday June 4th.
God Bless!

This Was Not My Best Day

Wednesday I had a terrible sick day. I had 16 diarrhea trips to the bathroom, 7 of those were before 9 AM. I thought I might have food poisoning or something. How would I ever know if I had something like that or if I am just having a bad day? Who knows?
All I could do was sleep and shit all day. It got so bad that I called Cindy at work and asked her to come home. I think that has happened only 1 other time in the last several years.
I could not eat, nor did I have the energy to get to the kitchen to get food if I was hungry. All day I had just a boost shake, and about 10 pieces of pineapple.
Finally I got up the courage to check my temperature at about 6 PM. It was 102. Normally a half a degree is all it takes to really screw me up, and make me weak and dizzy to the point of losing motor skills. So a 102 is about hallucination time.
So not withstanding all that I was of course primed to hear the result of my blood test that would decide if I got into the drug study or not.
So the moment we have all been waiting for….
I scored a 1.3 on INR again. No change. Novartis says I cannot be tested again and has eliminated me from the study. That’s right after 8 months of waiting I am out cold. The dream is over. I guess now it is back to MUSC and some other type of treatment. Novartis would not make any kind of exception or concession to let us try again in a month despite the CT scan or anything. They have simply shut the door and told me to screw off.
So 8 months of waiting 4 trips to Duke, 1000’s of dollars in personal costs to try to get in the study all for nothing. Not only that, but now I have been letting the disease run unchecked all this time, because no other treatment could be used as it would conflict with the study.
As you can imagine I am not in the best of spirits over this.
I am still sick today. Temperature is down to 100.5 but that completely incapacitates me. I have not really dealt with the news myself yet. I have to get healthy first, and then I can get mad and depressed and so on. So I have kind of pushed it down for now, but I knew that all of you would be going nuts to know the results.
The emails started this morning. “Did you get the results yet?” Yes, but I don’t want to talk about it. So here it is. I am not ready to face the reality of the news yet.

Snag #1 or 1,000,000

For those of you who know me well, you know my luck. And it ain't good.

When I left Duke Wednesday they all had these great smiles on their faces as they told me "everything is done and ready, now just sit back and wait and the study will begin". I left thinking "oh, you rookies, you have no idea who you are dealing with". The luck of the Irish got left in Ireland in my case. Here is snag #1 or 1,000,000 depending on when you joined my little life changing saga here.


The checklist to qualify for this study is say... 100 points long. All of these factors have to be validated to qualify, any one of them is off any your ass is out. Well the last blood test I did on Wednesday came back. One of the items they checked is the INR level of my blood. It is a viscosity test to see how quickly your blood clots.

I got a call from Emily, the clinical study paper work coordinator at Duke at about 5:15 today. The study drug contract has a stipulation at about point 98 of 100 that you have to a lower than 1.3 INR. Well guess what mine was! 1.3 So if the study was written as equal to or lower than a 1.3, I would be fine. But since it says less than 1.3 I am out on my ass.

Novartis will not compromise. Emily from Duke spent the better part of the day Friday on the phone and emailing various entities at Novartis to get them to allow a 1.3, they would not. She did get them to allow us to try that single test parameter again though.

Oh and it just gets better and better. This is one of those things that cannot be done anywhere except Duke for the formality of paper works sake. So I have to drive all the way there just to get one vial of blood taken and leave. 12 hours round trip. The kicker is that they have to send it off to an outside lab that collects the blood test from all the patients in the study nationwide. So it is not as if they are going to be the ones to analyse it, they just have to be the ones to pull it out of my arm. What does it matter who mails in the friggin blood???? Why cant it come from Alaska? But that is the rule, so I have to make a special trip just to retry this blood test.

Emily also tried to get Novartis to at least reimburse me for mileage or parking or something because of this special case having to drive 12 hours for 5 mins in the lab. But they were not going for it. Those cheap bastards. Do they not know that I am helping them also with this whole thing. The love is certainly a one way street with them. I am doing all the suffering and they are going to make the millions when this goes to market.

Well we already had an appointment scheduled for Wednesday to try to start the drug if all was approved by Novartis. But since that is not going to happen we would now use that appointment to do the blood test, we don't have to see the Dr. now or anything else but take blood.

So I would have had to miss Tuesday and Wednesday from work. So I asked her if it mattered what day we came now since it is just going to be a lab visit? She said that it did not, and I asked if we could do it Monday so then we could go up on Sunday and only miss one day of work instead of 2. They did not have a problem with that, just that I have to get myself within acceptable limits by then. So that is the plan to get there Monday for the new blood draw, hopefully pass the test and go back Tuesday and Wednesday of the following week (the 22nd and 23rd) to start the drug.

I asked what can I do to bring myself into acceptable limits for this parameter. They told me vitamin K was the target. So I have to eat mega doses of spinach to cram for my test on Monday morning. Also Kale and Brussel Sprouts are high in vitamin K. No wonder I have a bad level on this. What a repulsive group of food has vitamin K in it. Yuck!So my weekend will be spent stuffing down green leafy sour smelling vegetables so I can pass this stupid test.

I then asked of they would be retesting any of the other parameters with this blood draw because the high doses of vitamin K might kick off some other problem and make point 88 for instance out of whack. They said they would only be testing for this INR level and that nothing else would be looked at because I had already qualified in the green for the other parameters. That is good news, I at least have something I can focus on.

This is my last chance to get in. If I don't pass the test level and start the drug by the 23rd. my last CT exam will be too stale to qualify for a baseline. I will have to get another triphasic 3 section CT. All at my cost (about $5,000 total). Or scrap the study drug and go back to MUSC and some other treatment. The clock is ticking and the pressure is on. Wish me luck.
Oh, and did I mention I hate spinach!!!!!!!!!!!!!!

Sign on the dotted line

Hi Everyone,
Just wanted to let you know about the last visit we had to Duke on the 9th.
Today we got the rest of the preliminary tests done, complete physical, and CT results for getting the application in for the study drug.

I have signed the study contract and applicaion.

Now all the accumulated info should go on to the drug company and we should hear soon if I have been accepted into the program.
If that happens then I have another appointment on Wednesday the 16th to get the medicine and meet with the Dr. again for another evaluation. If the paperwork is not done or we have a snag in the application process it will be one more week, Wednesday the 23rd when I start the medicine.
After I start I have to go visit the Dr. every 2 weeks for a while for evaluation.The facility at Duke, The Morriss Cancer Center, is a fantastic building, with great amenities. What a top notch place. I took some pictures to show you. The people are the cream of the crop as well. The checkin staff, the blood draw nurses, the study coordinator and the doctors are all very helpful and seem happy to be there. It is like the all star team of medical staffing. Very reassuring.

Hope you like the pictures.

Outside the Morriss Center

Lobby

Information booth

Liz the Clinical Study Nurse Specialist

Um, obviously waiting for the EKG

Cindy waiting for me in EKG waiting area

Getting blood drawn