Both of Us .org
News and views from two charming fellows in Northeast Minneapolis.
Now with Cancer!
Now with Cancer!
Tuesday, May 13, 2008
Catch Up
By JB aka JayBee
On Wednesday of last week I went in for a PET scan. This is a specialized type of CT scan where they inject one with radioactive sugars and then watch where these sugars go. These sugars go to tumors mostly, and the technicians are able to capture images that provide a pretty good picture about which tumors are active and growing. My previous PET scan was on December 31, 2007. I also had a CT scan in mid-March which was not as detailed as the PET scan, but still provided useful information. PET/CT scans are useful as data points in tracking the progression of the tumors in my body, especially in internal organs like my lungs.
On Monday of this week, I had an MRI of my head done. This was done to get a good image of what is happening in my brain. I had my first MRI on December 31, 2007, another one in February before my Gamma Knife treatment, and one in mid-March. All together these four scans provide a good story for what is happening in my brain.
Today JSP and I met with Dr. A. and he told us what he read in the most recent scans, and what the implications of the data from all the scans together mean for me in the near future.
I was not surprised by anything Dr. A. had to say and for the most part I think I predicted fairly accurately what is happening in my body.
First off, regarding my brain, there is only good news. The latest MRI shows improvement over the mid-March MRI. There are no new detectable tumors in my brain and the tumors that are there were shrinking or stable. This is important to me for a number of reasons. First off, clearly I don't want brain damage from tumors. Secondly and just as importantly, my brain tumors were stopping me from being eligible for experimental cancer trials happening in Bethesda Maryland at either the National Institute of Health or National Cancer Institute. One or more of these trials show the most promising current experimental treatment for melanoma. I have been hoping to qualify for these trials. It appears that because I have had a stable brain for the past three months that I may now be eligible for one or more of these studies.
Another thing that my stable brain suggests is that the whole brain radiation and Gama Knife treatment that I underwent in February, while frightening at the time, were exactly the correct treatments for me. Hooray for that!
Dr. A. also spoke to us about the most recent PET scan. He said that the most recent PET scan shows that the tumors in my skin, muscle and lungs are still growing and that new tumors are appearing in my skin with regularity. Most importantly the tumors in my lungs are larger than they were in mid-March. This was not a surprise to me because I know that the tumors in my skin have been growing and that new tumors have been appearing in my skin. I correctly assumed that the tumors in my lungs were behaving roughly the same as those in my skin. The PET scan suggests that the IL-2 treatments that I underwent did not have a dramatic effect on my cancer's growth rate. This suggests that I will not undergo IL-2 treatment again. Hooray!
Dr. A. is making some phone calls on my behalf, and he said that I should expect to hear from someone in Bethesda, Maryland in the next week about possible treatments. I could end up going at anytime for treatment there if I am accepted into one of the clinical trials. Dr. A said that in his opinion I am a very good candidate for clinical trials based on my relative youth and easy going nature.
Washington DC here I come.
Luckily I have several good friends in the Washington DC area, so if I go there I will have some social support.
At the clinic today I was weighed, and from my scrawniest size in April when I was only 130 pounds, I have now gained back 20 of the 30 pounds that I lost. When I saw the scale read 150.2 lbs today I was very happy.
As I tell everyone who asks, I have been eating like a horse. My favorite foods have been Palak Paneer (an Indian dish made from spinach and Indian style cheese) and sushi/sashimi.
Two of our good friends from the Netherlands, Henzz and Pascal, will be visiting our home during the first week in June. I hope that if I am selected to be involved in a clinical trial that my treatments will start after their visits are over, as I am really excited to spend time with my dear friends from Holland.
On Monday of this week, I had an MRI of my head done. This was done to get a good image of what is happening in my brain. I had my first MRI on December 31, 2007, another one in February before my Gamma Knife treatment, and one in mid-March. All together these four scans provide a good story for what is happening in my brain.
Today JSP and I met with Dr. A. and he told us what he read in the most recent scans, and what the implications of the data from all the scans together mean for me in the near future.
I was not surprised by anything Dr. A. had to say and for the most part I think I predicted fairly accurately what is happening in my body.
First off, regarding my brain, there is only good news. The latest MRI shows improvement over the mid-March MRI. There are no new detectable tumors in my brain and the tumors that are there were shrinking or stable. This is important to me for a number of reasons. First off, clearly I don't want brain damage from tumors. Secondly and just as importantly, my brain tumors were stopping me from being eligible for experimental cancer trials happening in Bethesda Maryland at either the National Institute of Health or National Cancer Institute. One or more of these trials show the most promising current experimental treatment for melanoma. I have been hoping to qualify for these trials. It appears that because I have had a stable brain for the past three months that I may now be eligible for one or more of these studies.
Another thing that my stable brain suggests is that the whole brain radiation and Gama Knife treatment that I underwent in February, while frightening at the time, were exactly the correct treatments for me. Hooray for that!
Dr. A. also spoke to us about the most recent PET scan. He said that the most recent PET scan shows that the tumors in my skin, muscle and lungs are still growing and that new tumors are appearing in my skin with regularity. Most importantly the tumors in my lungs are larger than they were in mid-March. This was not a surprise to me because I know that the tumors in my skin have been growing and that new tumors have been appearing in my skin. I correctly assumed that the tumors in my lungs were behaving roughly the same as those in my skin. The PET scan suggests that the IL-2 treatments that I underwent did not have a dramatic effect on my cancer's growth rate. This suggests that I will not undergo IL-2 treatment again. Hooray!
Dr. A. is making some phone calls on my behalf, and he said that I should expect to hear from someone in Bethesda, Maryland in the next week about possible treatments. I could end up going at anytime for treatment there if I am accepted into one of the clinical trials. Dr. A said that in his opinion I am a very good candidate for clinical trials based on my relative youth and easy going nature.
Washington DC here I come.
Luckily I have several good friends in the Washington DC area, so if I go there I will have some social support.
At the clinic today I was weighed, and from my scrawniest size in April when I was only 130 pounds, I have now gained back 20 of the 30 pounds that I lost. When I saw the scale read 150.2 lbs today I was very happy.
As I tell everyone who asks, I have been eating like a horse. My favorite foods have been Palak Paneer (an Indian dish made from spinach and Indian style cheese) and sushi/sashimi.
Two of our good friends from the Netherlands, Henzz and Pascal, will be visiting our home during the first week in June. I hope that if I am selected to be involved in a clinical trial that my treatments will start after their visits are over, as I am really excited to spend time with my dear friends from Holland.
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Tuesday, May 06, 2008
Back at Work and Feeling Strong
By JB aka JayBee
The last week has gone very well.
I was released from the hospital on Sunday of last week after receiving all fourteen of my scheduled IL-2 doses. Having changed pain medications from Demerol to Morphine made a big difference in both my comfort level in the hospital and my state of mind at the end of treatment
My recovery week started with the assistance of my sister Julie. When she left to return to her home in Colorado, my intimate friend Cees de Vries arrived in Minneapolis from Holland to help look after me. On Thursday Cees, Connie and I went for a walk at Lake Calhoun before stuffing ourselves with sushi at Sushi Tango for lunch. Cees returned to the Netherlands on Sunday, May 5.
Also on Sunday, one week after being released from the hospital, JSP, myself and my nephew Matt went to the MayDay celebration at Powderhorn Park. The weather was wonderful and the pageant was beautiful. The Tree of Life gave birth to all manner of creatures and the Sun crossed the water signifying the return of spring.
My goal to eat everything in sight has been moving forward in the last week. I want to put thirty pounds back on that I've lost since December.
This week I am back at work and feeling strong and clear minded.
Later this week I go in for an MRI and PET /CT scan, then next week I will meet with Dr. A to discuss what we find on the images. The best case scenario would be that the tumors in my lungs and brain will show no growth. The tumors in my skin have undenaibly grown in the past month, logically the tumors in my organs have grown too. I hope that the IL-2 treatments have slowed this process.
I was released from the hospital on Sunday of last week after receiving all fourteen of my scheduled IL-2 doses. Having changed pain medications from Demerol to Morphine made a big difference in both my comfort level in the hospital and my state of mind at the end of treatment
My recovery week started with the assistance of my sister Julie. When she left to return to her home in Colorado, my intimate friend Cees de Vries arrived in Minneapolis from Holland to help look after me. On Thursday Cees, Connie and I went for a walk at Lake Calhoun before stuffing ourselves with sushi at Sushi Tango for lunch. Cees returned to the Netherlands on Sunday, May 5.
Also on Sunday, one week after being released from the hospital, JSP, myself and my nephew Matt went to the MayDay celebration at Powderhorn Park. The weather was wonderful and the pageant was beautiful. The Tree of Life gave birth to all manner of creatures and the Sun crossed the water signifying the return of spring.My goal to eat everything in sight has been moving forward in the last week. I want to put thirty pounds back on that I've lost since December.
This week I am back at work and feeling strong and clear minded.
Later this week I go in for an MRI and PET /CT scan, then next week I will meet with Dr. A to discuss what we find on the images. The best case scenario would be that the tumors in my lungs and brain will show no growth. The tumors in my skin have undenaibly grown in the past month, logically the tumors in my organs have grown too. I hope that the IL-2 treatments have slowed this process.
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Sunday, April 27, 2008
Getting Unhooked and Preparing to Return Home
By JSP
JayBee completed all 14 of the IL-2 treatments during this second round, one more than the first time. The floor doctor just came in and checked JayBee out, giving us indication that he could possibly leave the hospital today...which is wonderful news. The last time he was here, they moved him to a dark unpleasant room out of the ICU to recover for two days. The second day was nearly impossible to deal with since JayBee so badly wanted to be done and at home. This time if we can avoid an extra day at the hospital, I believe his recovery will start that much earlier. Who wants to stay in the hospital anyhow.
They have already disconnected the IV feeds to the PIC in JayBee's arm. The nurse is in the room now and taking off the monitors and asking to take out the PIC. JayBee will soon be free of that and is happy His temperature is normal and vitals also returning to normal. We are also packing up the stuff here; food, clothes, computer. We got a very beautiful orchid from our friends Morgon Mae, Jamie, Patrick and Marcos. We have to be careful to protect it from the unusually chilly weather we have this weekend. It snowed about an inch yesterday...after having a couple days in the 70's earlier in the week.
JayBee will be home from work this week, recovering. His sister Julie from Denver will be here until Tuesday. Wednesday our close friend from Holland, Cees will arrive for 5 days. He will be a welcome, pleasant and helpful friend in our household.
Several weeks will pass until we know more about how successful these IL-2 treatments are. The doctor mention after two rounds of treatments, typically they will use MRI, CT and PET scans to evaluate the status of the cancer. JayBee does not like any of these tests either, however it will give us definitive answers to the question if these harsh treatments are worthwhile in weeding out the cancer.
They have already disconnected the IV feeds to the PIC in JayBee's arm. The nurse is in the room now and taking off the monitors and asking to take out the PIC. JayBee will soon be free of that and is happy His temperature is normal and vitals also returning to normal. We are also packing up the stuff here; food, clothes, computer. We got a very beautiful orchid from our friends Morgon Mae, Jamie, Patrick and Marcos. We have to be careful to protect it from the unusually chilly weather we have this weekend. It snowed about an inch yesterday...after having a couple days in the 70's earlier in the week.
JayBee will be home from work this week, recovering. His sister Julie from Denver will be here until Tuesday. Wednesday our close friend from Holland, Cees will arrive for 5 days. He will be a welcome, pleasant and helpful friend in our household.
Several weeks will pass until we know more about how successful these IL-2 treatments are. The doctor mention after two rounds of treatments, typically they will use MRI, CT and PET scans to evaluate the status of the cancer. JayBee does not like any of these tests either, however it will give us definitive answers to the question if these harsh treatments are worthwhile in weeding out the cancer.
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