Clinical Trial #2 - Starts

Well, on Thursday I went up to Karmanos Cancer Center and spent the entire day there. The schedule was hectic to say the least. 7:30a I had arrived in the Cat Scan Area or Radiology, then after that Carm and I walked up to the Clinic, where I registered and waited at 8:40am. A little after 9am I was taken inside by the Nurse, who I really wasn't thrilled with, since her bedside manners was not the best. She admitted that she had not worked in that clinic before and was still getting use to it. This made me even more apprehensive about having her around me. She left and the Physician's Assistant Mary Jo came in and went over the new Trial. I was conerned about it, since the information that I read talked about biopsying of the tumor or skin or both, well Mary Jo advised that they would do the biopsy of the skin and that it would not be a big chunk of skin, just 2 little punctures in the skin, that would be about the size of a ball point pen. Great news to hear, I relazed a little more and we discussed my Neuropathy which has been diagnosised at Grade 2, but Mary Jo said that it wasn't since I am able to type on a keyboard and button my shirt, so this too made me feel better, especially after she dropped a dime on the exam table and told me to pick it up, which I did without any problem.
After seeing Mary Jo, Carm and I proceeded to have an Echocardiogram done, which wasn't too bad, except for when the Tech started to jam the wand into my left side at the bottom of my ribs and I started to roll back and she kept pushing the wand in, then I mentioned to her that it was hurting and she apologized. After the Echo was completed, we went up to the Phase 1 Infusion area to speak with Andrea, the Lead coordinator, about the schedule and to get blood and urine drawn. The trial starts on Tuesday, Sept 1st, and proceeds from there with me going back in on Wednesday for the 24 hour follow up. The good thing is I don't have to worry about collecting my Urine and taking it into them, YAY!!! All collections will be done there. We also got mileage forms, so that we can submit them and get paid for traveling and gas, which will help.
After seeing Andrea, Carm and I walked to the Registration Desk, so that we could get our Pass for the Children's Hospital PET Scan area. By this time I was starting to feel the effects of not eating or drinking since 9am, I asked for a Navigator to transport me to the PET Scan. I wasn't suppose to be there until 2:30pm, but I figured if I could get in early then so be it. This worked out, since I was taken in at 1:30pm and was out of there a little after 3pm. Needless to say both Carm and I where feeling a bit worn out and didn't feel like doing much when we got home.
I called Mary Jo on Friday to find out the test results from the Urine and she mentioned that shw would be calling Dr. Schaeffer's Office to get somethings clarified since she was having a hard time reading through the records. I confirmed the phone number and she also mentined that she would be calling Dr. Rubin's Office also. The Urine Test came back negative and she mentioned that in the Report for the CAT & PET Scans it was noted that there was a Lymph Node that had grown, pressing up against my bladder, which might be causing me to have problems with frequent urination. I asked her about this and whether or not it was something new that had developed or if it was there all this time? She came back saying that it was noted on previous reports and that it was being watched. Now, she mentioned that she would have to look into treatment options since she could think out Radiation and Surgery. The Radiation Option may not work, since I had Radiation Treatment in that area back in 2008. Mary Jo reassured me that she would have an anaser for me on Tuesday. I have taken the necesary precautions to help avoid embarrassing moments, but there has been a couple of times that I have had accidents. It will be interesting to see what options they suggest, since I do not want to go wround like this for the rest of my life cycle.
After discussing the Trial and the days that Carm and I would be traveling to Detroit and back I called Mary Jo back in mid-afternoon to let her know that I would be doing the trial, shew mentioned that she was able to get all the information that she needed from Dr. Rubin's Office and was still waiting to hear back from Dr. Schaffer's Office. I told her to call me if she had any problems getting the information from Schaffer's Office and I would see what I could do.
Well, here it is another Saturday Morning and I will be ending this here. More to come in this never ending battle.

Clinical Trial #2 Information Received

Well, last Thursday I received call from Mioko, Clinical Trials Eligibility Coordinator for Karmanos Cancer Center, who was calling to give me a information on the next Study and also to let me know that I would have all testing done in 1 day. So, this means that I will have a Cat Scan at 7:30a, then I see the Physician's Assistant at 9am, then at 11am I have Ultrasound of my Heart scheduled. A short break after, with no food after 10:30a, and a PET Scan at 2:30p. So, it will be another busy day for me and Carmen, with a lot of waiting for procedures to be completed or just waiting between. Hopefully, I will be able to get the procedures completed without any problems and get my schedule set for treatment.
The one thing that makes this Trial a little different from the last one, is the biopsy of either the skin or tumor or both. I am hoping for one biopsy to be completed and not the two. I will have to wait and see how that goes and take it form there. Anxiousness is one thing that I am trying not to let get the best of me, this early, but I know on Wednesday it will be kicking into high gear. For now I will concentrate on working and doing things around the house, until I find out what exactly will be taking place with this Trial, since the material, I have read over states that the Trial is 5 months long. Nothing is mentioned about any other CAT/PET Scans in between, so this will be the one question that I will get an answer to. On the last Clinical Trial I had the CAT Scan during Cycle 2 and was scheduled for Cycle 3, when I got the news of the lesions growing 1 cm, but they are located in a Non-life Threatening are of the lung. This news was something that was a relief to Carmen and I, since we was not informed of this, nor did we think of questioning the location.
Well, with this information being at hand and the wait for Thursday, 8/27, the week will be interesting to say the least. May be I will go through the earlier posts and see if there is anything there that does not sound correct, but then again may be I will leave them alone.

Cat Scan Results Not Favorable

I had the Cat Scan last Thursday, August 6th, I immediately emailed the Physician Assistant (PA) as a reminder that it had been completed and I would be waiting to hear from her on Friday. The PA emailed me back on Thursday night and reassured me that she would call me after she had a chance to read the report from the Radiologist. Friday came, I picked up Ian and hung out with him all day and by 6p I had not heard from the PA, so I called her number and got her Voicemail Greeting stating that she was gone for the Weekend. I called Dr. Heath's number, paged her and spoke with her. Dr. Heath informed me that the Nodals in my Lungs had grown 1cm and that since the nodals are located in a Non-Life Threatening area of my Lung that she was concerned with the growth more then anything else. I see Dr. Heath this Thursday and she will update me on what Clinical Trial I am eligible for and when I can start.
Hearing Dr. Heath tell me that the Nodals are in an area of my lungs, that are considered Non-Life Threatening, took some of the anxiety away; since I was not sure of the exact location. My weekend was good, I relaxed as much as I could and started sorting through some of my personal stuff that I had stored at my Mom's House. The sorting wasn't much fun, but it is necessary, so I can figure out what I'm keeping and what I'm getting rid of or donating. So far, not much has been moved, but this will be next. I've also thrown out a couple items also.
I'll be cutting this short, since I really don't have much more to say. I'll update this after I get back from my appointment with Dr. Heath and let everyone know what I'm doing next.

Clinical Trial Update for Weekedning 1 August 2009

This week I was weighed in at 298 lbs, BP was around 110/66, a and my temperature was right at 98.5. After getting this out of the way, the Nurse proceeded to access my port and draw the blood to sent off to the Lab. The Physician Assistant (PA) Margarette came up and gave me my quick "physical" to see how I was doing. She pronounced me fit for treatment and mentioned that my Lungs where sounding really good and moving air better then the last couple of weeks. I ate lunch while the blood was sent off to the Lab, the lunch was an Einstein Bagel BLT Wrap, which was good, but had a little bit too much of a bite to it; since there was Chitpolte Sauce on it, next time I'll get Mayo on it instead. As for desert, I had a handful of Fresh Gummy Bears (More on the freshness and tastiness later).
Well, while waiting for the blood results back from the Lab. I took a nap while waiting, with my sunglasses on, so that I could sleep without the light in my eyes. The sunglasses trick I learned early on with the Chemotherapy that I was getting preoperatively. It helps to block out most of the Fluorescent Lights and also makes the Nurses unsure what your conscious state is awake or asleep. Anyhow, I got the news that my White Blood Count was really good and then they started calculating the weight to treatment ratio, which has a buffer of +/- 5%, and everytime the 4 Nurses ran it they each got a different percentage, one got 5.2%, while another got 5%. So, one Nurse decided to get the most current weight on me and this put in at 4.9% of my original weight. When I started the Trial I was weighing in at around 318 lbs and as I mentioned earlier in this post, I've lost. The weigh loss is because since I've had the pneumonia, my apettite has not been like it was, I'm not eating as large of meals that I once was. The PA was consulted, along with Dr. Heath and it was decided to treat me.
The funny thing about this whole ordeal was when I was woke up from my nap, the Nurse took my BP again and it was 99/66, which she commented "That is too low for a Big Guy like you, you need to do some exercising." So she took it again and it came up to 100/77 and she was satisfied with that, but when she recorded it in the file, she recorded it at 99/66. The PA cut my Tekturnia down from 150mg to 75mg a day, and told me that she didn't want me fainting on her. So I came back with "Haven't ever had someone faint for you?" LOL. The PA chuckled and kept her composure and mentioned "I don't think I would be able to pick you up from the floor!" and that is how this ended.
So far, with the Post-treatment week, I have been coughing up phelm and at times it has been bigger then normal, so I am hopeful that this is a good sign; since the Trial is ending and on Monday I go for a Blood Draw, then my CT Scan is scheduled for August 6th in the Evening and I see Dr. Heath on the following Thursday. It will good to see who this trial has turned out, since I am anxious to get back to my normal life, but this past couple of months has been a little overwhelming for me and especially Carmen.
Personal issues are coming to the fore-front more and I am forced to start focusing on them, since it deals with how my Mom will be living and moving her stuff and sorting through a lot of my personal stuff that I have stored and deciding what to keep versuses what to just get rid of. I have sat down with Carmen and started putting together a list of some of the things that I want to keep, but I know I will be adding to it as this week progresses.
I have noticed that while eating the Gummy Bears that my Taste Buds just started bursting with their flavour and I was momentarily in euphoria. This was repeated on Thursday when I started to eat a Grape Popsicle, then a Cheery and an Orange flavoured one. I ended up downing like half a box of Popsicle, before I stopped myself. Later Thursday Evening Carmen commented on how fast the Popsicles had been ate, when normally they last for about a week. The other thing that I have noticed for the second consecutive week is that my Osteoarthritis in my knees has not been too much of a problem. Last week, I noticed this and felt good until late Thursday night, then the painful reminder came back to kick me. This week so far, I am still feeling good and walking with no pain in my knees. The neropathy in my hands seems to have increased a little more then normal and typing on the keyboard is almost challenging. My feet seem to be fine for now, but this may change. I mentioned to Carmen that perhaps the cooler weather is causing my hands to be like they are. I will mention this on Monday when I go to Karmanos and see what they have to say about it. For now, I will end this and see what happens this week and go from there.