First of all, I apologize for not getting a post out earlier but the past few days have been very rough.
Wednesday, May 5th:
Flew to Boston, very rough travel. Couldn't walk, had to be transported throughout the airport and my flights in a wheelchair. Arrived in Boston around 5pm and spent the evening in my hotel room in a lot of pain. Couldn't walk due to the pain in my feet and the sternal pain has been nearly unbearable.
Thursday, May 6th:
Very rough morning, took me 45 minutes to get out of bed. Managed to get to the hospital. My second biopsy was completed. Good news there was that some of the tumor in my left groin appeared to be fluid filled, so it's size should decrease when the biopsy incision is all healed up. After the biopsy I was wheeled to the CRC and spent a few hours there trying to rest. It was then that the decision was made to admit me to the hospital due to my pain and condition of my legs. Thursday evening in the hospital was very rough. I had an MRI of my spine and a CT scan of my chest. The MRI was to make sure there wasn't a tumor that was compressing a part of my spine and causing the issues in my legs. The CT scan was to see what was going on with the tumors in my chest. With all of this, there was a lot of movement from my bed to a stretcher to the tables to do the scans then back to the stretcher and to the my bed. Unfortunately, I was in so much pain that they had to use a board to slide me from each platform to another. We completed everything at 11pm. My sister and her husband flew up to Boston for support after hearing I would need to be admitted.
Friday, May 7th:
Today I must have met every doctor in Boston. The visits didn't start until around 9 o'clock this morning but after that it was a revolving door all day. Results of the MRI of my spine showed that there is no significant tumor(s) that are compressing my spine in any way. This is a very good thing. CT scan shows that the cancer in my chest has spread to my right side and may be progressing along an artery that leads into one of my lungs. It also indicated that I do have a few blood clots in my right lung. However, I'm told the blood clots are treatable; I have to get a shot in my belly every day for awhile. This will thin my blood and help break down the blood clot. I was also given a pneumonia vaccination as a precaution.
One very good thing that came out of today is that my pain management is on the right track. I've been on IV pain medication since being admitted to the hospital, but my sternal pain is to the point that morphine just doesn't cut it. So I'm now on morphine's big brother; a drug called Dilaudid. 4mg every 2 hours.
Summary:
Admitted to the hospital for at least 2 more days.
Intense pain in my chest and am still unable to use my legs properly.
Blood clots in my right lung which are treatable.
Cancer in chest has spread to the right side.
Cancer sites that we are monitoring have grown approximately 10%.
Currently on IV pain management.
Current Plan:
MRI my legs.
Solidify a pain medication regiment.
Get as much rest as possible over the weekend in hopes of being able to return home as soon as possible.
Most Importantly:
Thank you so very much. I could never name everyone that deserves an individual thank you this past week and since my diagnosis. Thank you to all of my co-workers; those that are covering my work load, those that have offered additional support and prayers outside of work. Thank you to everyone that has sent a text message to chat while I'm here, it's great hearing from friends in times like these. Thank you Aaron Hyde, your phone call was a life changer.
Friday, May 7, 2010
Friday, April 30, 2010
The Past Few Days
Beginning last Sunday, April 25th, a slight cramping feeling started in my right calf. The cramping feeling got progressively worse through Tuesday evening.
Under the advisement of my doctors in Boston and Iowa City, I went to the local emergency room at Covenant Medical center for an ultrasound to make sure it wasn't a blood clot. No clot was found, everything looked great. Covenant also did some blood work and, according to the Covenant doctor, I "look perfectly healthy on paper, but there's obviously something going on in that leg". We left Covenant with a prescription for antibiotics and the guess that it was an infection of some kind, time would tell.
Well, time told. I woke up Thursday in more pain and by Thursday night the cramping pain had progressed into both feet. So I now had both feet and a right calf that felt like they were cramping and wouldn't stop.
Upon hearing this news on Friday morning, both Boston and Iowa City advised me to get to Iowa City immediately to see my oncologist (better perspective on my particular case than the ER doctor had) to figure out just what was going on with my legs.
A breath of fresh air: Boston and IC now both think they know what's happening. After the clear ultrasound and blood work that hasn't flagged anything, they believe that my calf and feet are just cramping continuously. This can happen with the type of trial drugs that I'm on because they can deplete a lot of the magnesium, electrolytes, etc. in my system. Why my feet and calf? Because they're the muscles you use the most every day. Now, I know that doesn't sound like fun (and it's not) but the good news is; it's easy to fix. TUMS and Powerade and a heating pad should help clear it up in about 48 hours.
Iowa City is still running some blood work to make sure no permanent tissue damage has been done, but for now, I am to rest up and stop the chemotherapy drugs until I'm back in Boston.
Short term good: I get a break from the chemo and I don't have to fast anymore. I won't be taking anything but Aleve :-)
What's Next:
Fly to Boston on Wednesday, May 5th. Get a biopsy and some more testing and potentially go back on the chemo.
Thank you everyone, especially those of you at work who have helped support me while I had to take this sudden time off. Believe me, I'd work 48hrs straight rather than have those 48 straight hours of continuously cramping feet. :-)
Under the advisement of my doctors in Boston and Iowa City, I went to the local emergency room at Covenant Medical center for an ultrasound to make sure it wasn't a blood clot. No clot was found, everything looked great. Covenant also did some blood work and, according to the Covenant doctor, I "look perfectly healthy on paper, but there's obviously something going on in that leg". We left Covenant with a prescription for antibiotics and the guess that it was an infection of some kind, time would tell.
Well, time told. I woke up Thursday in more pain and by Thursday night the cramping pain had progressed into both feet. So I now had both feet and a right calf that felt like they were cramping and wouldn't stop.
Upon hearing this news on Friday morning, both Boston and Iowa City advised me to get to Iowa City immediately to see my oncologist (better perspective on my particular case than the ER doctor had) to figure out just what was going on with my legs.
A breath of fresh air: Boston and IC now both think they know what's happening. After the clear ultrasound and blood work that hasn't flagged anything, they believe that my calf and feet are just cramping continuously. This can happen with the type of trial drugs that I'm on because they can deplete a lot of the magnesium, electrolytes, etc. in my system. Why my feet and calf? Because they're the muscles you use the most every day. Now, I know that doesn't sound like fun (and it's not) but the good news is; it's easy to fix. TUMS and Powerade and a heating pad should help clear it up in about 48 hours.
Iowa City is still running some blood work to make sure no permanent tissue damage has been done, but for now, I am to rest up and stop the chemotherapy drugs until I'm back in Boston.
Short term good: I get a break from the chemo and I don't have to fast anymore. I won't be taking anything but Aleve :-)
What's Next:
Fly to Boston on Wednesday, May 5th. Get a biopsy and some more testing and potentially go back on the chemo.
Thank you everyone, especially those of you at work who have helped support me while I had to take this sudden time off. Believe me, I'd work 48hrs straight rather than have those 48 straight hours of continuously cramping feet. :-)
Thursday, April 22, 2010
Dana Farber Follow-up & small but good news
Today was an all day event in the CRC. Very simply, this visit was to make sure that my body is still handling the chemo without doing damage. This consisted of 3 blood draws and 6 EKGs over a 9 hour period. My EKGs looked perfect as well as the blood work. So far, so good, the chemo isn't doing any permanent damage at all. Chalk one up for the new era of targeted medicine. The best news: I can start eating small meals with my pills starting on May 7th. No more of this fasting before and after stuff. For some reason Pfizer bumped the date up... which I very much appreciate.
Dr. Charles Yoon (he did my biopsy) stopped by to follow-up on the incision made from my biopsy. Everything has healed very well and he'll open it up again in two weeks to do a follow-up biopsy after being on the chemo treatment for 28 days.
Dr. Butrynski paid me a visit. We discussed some of the changes in the pain in my chest and potential pain management possibilities for down the road if things change. For now I prefer to take as few pain killers as I can, yet stay comfortable.
Other than that, I slept nearly all day. It feels like I've slept 16 hrs of the last 24 and cannot seem to be able to shake the feeling of exhaustion.
As of today, the pain in the left side of my chest is almost completely gone. The downside is that it seems to have migrated to the right side of my chest. The discomfort is a mirror image of what I felt on my left side. Even Dr. B doesn't know why or how that would happen. We hope to learn more in June when I have my second CT scan.
Next Step:
I'll be right back here in 2 weeks. The only thing different from this appointment will be a follow-up biopsy before I head over to the CRC. For those of you wondering if this is or isn't working; we really won't know until after I get my second CT scan which is scheduled for my June 2nd-3rd visit. It's a lot of waiting (believe me I know), but we won't really know until then.
Thank you everyone for your continued prayers and support. I do believe that those prayers have contributed greatly to the reduction of pain in my chest.
Until I have more news, Thank you.
Dr. Charles Yoon (he did my biopsy) stopped by to follow-up on the incision made from my biopsy. Everything has healed very well and he'll open it up again in two weeks to do a follow-up biopsy after being on the chemo treatment for 28 days.
Dr. Butrynski paid me a visit. We discussed some of the changes in the pain in my chest and potential pain management possibilities for down the road if things change. For now I prefer to take as few pain killers as I can, yet stay comfortable.
Other than that, I slept nearly all day. It feels like I've slept 16 hrs of the last 24 and cannot seem to be able to shake the feeling of exhaustion.
As of today, the pain in the left side of my chest is almost completely gone. The downside is that it seems to have migrated to the right side of my chest. The discomfort is a mirror image of what I felt on my left side. Even Dr. B doesn't know why or how that would happen. We hope to learn more in June when I have my second CT scan.
Next Step:
I'll be right back here in 2 weeks. The only thing different from this appointment will be a follow-up biopsy before I head over to the CRC. For those of you wondering if this is or isn't working; we really won't know until after I get my second CT scan which is scheduled for my June 2nd-3rd visit. It's a lot of waiting (believe me I know), but we won't really know until then.
Thank you everyone for your continued prayers and support. I do believe that those prayers have contributed greatly to the reduction of pain in my chest.
Until I have more news, Thank you.
Sunday, April 11, 2010
Chemo - Day 4
Well, it's Sunday morning, day 4 on the clinical trial. To be clinically accurate; Cycle 1, Day 4 (Cycles are 28 days). So far everything is going very well. The pills make me a little nauseous but I'm told that will probably go away when my body adjusts a little. Also, once I get to cycle 2 day: day 15 (May 20th) I'll be able to eat small meals when I take the pills, so that will be a very good day. For now, no eating 2 hours prior and 2 hours after taking the pills. I haven't been told nor have I asked when we will know "if this is working". I have my schedule for Boston through August. I'll be back there fairly often for blood work (mainly to make sure this stuff isn't hurting my liver and to make sure I'm soaking it all up), but the next time I'm scheduled for any kind of a scan is June 2. On that date I'm scheduled for another CT scan of my torso.
Most of my Boston trips will require flying out the day before the appointment and returning the day after.
CRC = Cancer Research Center
Dr. B = Dr. Butrynski (My main Dr. in Boston)
For now this is what the Boston schedule looks like:
April 22 = CRC and Dr. B.
May 6 = CRC, 2nd Biopsy, Dr. B, back to the CRC
May 20 = CRC and Dr. B.
June 2-3
June 2 = CT scan
June 3 = CRC and Dr. B.
July 1 = CRC and Dr. B.
July 28-29
July 28 = CT Scan
July 29 = CRC and Dr. B.
August 26 = Dr. B.
Next Step:
April 22nd all day visit to Boston.
Thanks again to all of you for the prayers and support throughout all of this and in particular, when I was in Boston for the first treatment. It may get old, but each entry will end with a Thank You to all of you.
Most of my Boston trips will require flying out the day before the appointment and returning the day after.
CRC = Cancer Research Center
Dr. B = Dr. Butrynski (My main Dr. in Boston)
For now this is what the Boston schedule looks like:
April 22 = CRC and Dr. B.
May 6 = CRC, 2nd Biopsy, Dr. B, back to the CRC
May 20 = CRC and Dr. B.
June 2-3
June 2 = CT scan
June 3 = CRC and Dr. B.
July 1 = CRC and Dr. B.
July 28-29
July 28 = CT Scan
July 29 = CRC and Dr. B.
August 26 = Dr. B.
Next Step:
April 22nd all day visit to Boston.
Thanks again to all of you for the prayers and support throughout all of this and in particular, when I was in Boston for the first treatment. It may get old, but each entry will end with a Thank You to all of you.
Thursday, April 8, 2010
First Chemotherapy Treatment
At 9:35am this morning, I received my first chemotherapy treatment; 250mg of the experimental Pfiezer drug. I haven't eaten since 7:30pm last night and cannot eat again until 11:35am this morning so I'm a little nauseous and very tired.
This morning they also had to do minor surgery on my leg to obtain several biopsy samples for the study.
That's all for now, more updates later.
Thank you everyone.
This morning they also had to do minor surgery on my leg to obtain several biopsy samples for the study.
That's all for now, more updates later.
Thank you everyone.
Tuesday, April 6, 2010
Consent Forms Signed - New Info
Ok, so let's get a little technical here. This is part of what it says on my consent form:
Protocol Title:
Phase 1 Safety, Pharmacokinetic and Pharmacodynamic Study of PF-02341066, A C-MET/HGFR Selective Tyrosine Kinase Inhibitor, Administered Orally to Patients with Advanced Cancer.
(So... the drug I am taking is made by Pfiezer and is called PF-02341066)
Another part of the consent form explains:
"Tumor growth is found to be largely controlled by tiny structures on the outer surface of tumor cells called growth factor receptors. A particular growth factor receptor, called c-MET/HGFR has been well known for its role in the regulation of cell growth and invasion of tumor cells."
(Basically - this c-MET/HGFR gizmo on some of my cells might be the way in which my cells are being told to become cancerous. So... we're going to give this PF-02340166 a try and see if it can just shut that little gizmo off)
Also - I found out that the reason I have to come out to Boston for everything is not because I can't take the pills back home with me. It is because of the way clinical trials must be run. All of my blood draws and testing MUST be done out here at the facility which is administering the clinical trial. I will be sent home with pills that I have to take every day.
Tomorrow starting at 7:15am:
Blood draw, CT prep and scan, EKG. (To get baseline numbers before I start my drugs)
On a different note, I'm a little disappointed that my old body isn't waking up and kicking this thing square in the teeth. So I'm hoping that after treating my wonderful body to a little 'Legal Seafood' in the Prudential Building this evening, it appreciates the pampering and decides to help me out with this whole cancer thing. As someone recently reminded me, "over the course of 12 months, every cell in our body is replaced with a new one". With that said, I think I'll just go ahead and choose not to replace any of these cancer cells with anything but healthy ones.
It has been an incredible help being back in Waterloo around my family and some of my close friends. I was able to enjoy a Saturday lunch this past weekend with some of my family. That support and proximity to those important people has helped tremendously on the rough days.
I say this a lot, but I can't say it enough; all of the support is so very overwhelming and appreciated more than any of you will ever know. THANK YOU.
Protocol Title:
Phase 1 Safety, Pharmacokinetic and Pharmacodynamic Study of PF-02341066, A C-MET/HGFR Selective Tyrosine Kinase Inhibitor, Administered Orally to Patients with Advanced Cancer.
(So... the drug I am taking is made by Pfiezer and is called PF-02341066)
Another part of the consent form explains:
"Tumor growth is found to be largely controlled by tiny structures on the outer surface of tumor cells called growth factor receptors. A particular growth factor receptor, called c-MET/HGFR has been well known for its role in the regulation of cell growth and invasion of tumor cells."
(Basically - this c-MET/HGFR gizmo on some of my cells might be the way in which my cells are being told to become cancerous. So... we're going to give this PF-02340166 a try and see if it can just shut that little gizmo off)
Also - I found out that the reason I have to come out to Boston for everything is not because I can't take the pills back home with me. It is because of the way clinical trials must be run. All of my blood draws and testing MUST be done out here at the facility which is administering the clinical trial. I will be sent home with pills that I have to take every day.
Tomorrow starting at 7:15am:
Blood draw, CT prep and scan, EKG. (To get baseline numbers before I start my drugs)
On a different note, I'm a little disappointed that my old body isn't waking up and kicking this thing square in the teeth. So I'm hoping that after treating my wonderful body to a little 'Legal Seafood' in the Prudential Building this evening, it appreciates the pampering and decides to help me out with this whole cancer thing. As someone recently reminded me, "over the course of 12 months, every cell in our body is replaced with a new one". With that said, I think I'll just go ahead and choose not to replace any of these cancer cells with anything but healthy ones.
It has been an incredible help being back in Waterloo around my family and some of my close friends. I was able to enjoy a Saturday lunch this past weekend with some of my family. That support and proximity to those important people has helped tremendously on the rough days.
I say this a lot, but I can't say it enough; all of the support is so very overwhelming and appreciated more than any of you will ever know. THANK YOU.
Thursday, April 1, 2010
Schedule of First Treatment
I received 2 phone calls yesterday from Dana-Farber in Boston, each with some great news.
Call #1:
Insurance will be covering this Phase 1 clinical trial.
Call #2:
This call was from Kristen (The RN that will be handling most of the scheduling when it comes to the clinical trial).
My week will begin on Tuesday and end with a short appointment on Friday. I will receive the actual 'treatment' on Thursday.
Tues afternoon = Talk to the doc - sign the consent forms.
Wed morning = Lab work, CT scan, EKG
Thursday = More lab work and a biopsy in the morning, followed by a minimum of 8 hours in the Cancer Research Center (CRC) to receive the actual treatment and monitor me.
Friday morning = follow up appointment
Next Step:
Plane ticket will be booked today and I'll be in Boston before I know it.
Call #1:
Insurance will be covering this Phase 1 clinical trial.
Call #2:
This call was from Kristen (The RN that will be handling most of the scheduling when it comes to the clinical trial).
My week will begin on Tuesday and end with a short appointment on Friday. I will receive the actual 'treatment' on Thursday.
Tues afternoon = Talk to the doc - sign the consent forms.
Wed morning = Lab work, CT scan, EKG
Thursday = More lab work and a biopsy in the morning, followed by a minimum of 8 hours in the Cancer Research Center (CRC) to receive the actual treatment and monitor me.
Friday morning = follow up appointment
Next Step:
Plane ticket will be booked today and I'll be in Boston before I know it.
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