Friday, July 29, 2005
A long week and a busy one really
The kids (Matt and Kate and gang) have been gone all week. I hung around their house everyday because I had radiation daily. The right leg seems to be coming around ok and I am able to drive an automatic. Some strength has returned to the leg as well but I am not ready to tackle a standard shift quite yet I think. Today was the last day for radiation.
On thursday I met with a doctor at the VA who will be my primary care physician. Apparently you can't be seen by any clinic unless your primary care provider requests it (dental, optometry, etc). He ordered a referral for me to the oncology clinic. I am going to talk to them about administering the Velcade (bortezomib) which has been found useful in treatment for multiple myeloma (a cancer of the bone marrow). The drawback to that is I would have to be treated by the VA rather than Dr. Popa but I could consult with her periodically.
Today I began the Velcade treatment. I have to sign a financial responsibility form that I will pay for the drug. We are going to make a claim against the insurance company and when they reject it the pharmaceutical company will appeal for me. In conjunction with this I am asking the company to waive the cost of the drug. So I have 4 avenues I am pursuing
1. Get the insurance company to pay
2. Get the drug company to pay
3. Get the VA to adminster the drug
4. I pay out of pocket the $960 each time the drug is administered
The drug will be given on days 1, 4, 8, and 11 then I will rest for 21 days and begin the cycle again. This will continue as long as cancer remission is evidenced. Next week I will take a couple of scans to establish a baseline and see how the treatment goes from there. That will give us a comparison and who knows how long it will be successful?
Well that is about all. Pray that God continues to grant me time as He has been pushing this cancer back for me. In addition we know He will provide the funding needed from one of the sources mentioned above. He is just and righteous. I thank Him daily for each day I am able to spend with the family.
See ya
Bob
On thursday I met with a doctor at the VA who will be my primary care physician. Apparently you can't be seen by any clinic unless your primary care provider requests it (dental, optometry, etc). He ordered a referral for me to the oncology clinic. I am going to talk to them about administering the Velcade (bortezomib) which has been found useful in treatment for multiple myeloma (a cancer of the bone marrow). The drawback to that is I would have to be treated by the VA rather than Dr. Popa but I could consult with her periodically.
Today I began the Velcade treatment. I have to sign a financial responsibility form that I will pay for the drug. We are going to make a claim against the insurance company and when they reject it the pharmaceutical company will appeal for me. In conjunction with this I am asking the company to waive the cost of the drug. So I have 4 avenues I am pursuing
1. Get the insurance company to pay
2. Get the drug company to pay
3. Get the VA to adminster the drug
4. I pay out of pocket the $960 each time the drug is administered
The drug will be given on days 1, 4, 8, and 11 then I will rest for 21 days and begin the cycle again. This will continue as long as cancer remission is evidenced. Next week I will take a couple of scans to establish a baseline and see how the treatment goes from there. That will give us a comparison and who knows how long it will be successful?
Well that is about all. Pray that God continues to grant me time as He has been pushing this cancer back for me. In addition we know He will provide the funding needed from one of the sources mentioned above. He is just and righteous. I thank Him daily for each day I am able to spend with the family.
See ya
Bob
Friday, July 22, 2005
The Velcade search :)
Well the best I can tell the VA hospital is not familiar with Velcade. I have to have a primary care provider assigned to be seen in any clinic and that will not happen until the 28th of July. The Oncology clinic is open on Wednesdays so I need to slip over and speak to them about the drug. I talked to the pharmacy at the VA and they said the drug needs to be on their formulary in order to get it. However, if an oncologist wants the drug it can be requested thru a process. The approval chances are low if it is not approved by the FDA for the disease being treated.
I did a search for clinical trials using Velcade and came up with 8 of them. I asked Dr. Popa to scan them and see if any look viable for me. Barring that Char and I will probably go with the Velcade 'out of pocket' treatments for now and and appeal to the insurance company for payment. I want to sit down with the doctor and plot out where we are with the cancer and what constitutes success with the Velcade. What and how frequent will we test for efficacy.
Additionally the radiation appears to be having a positive effect on the right leg and I am getting some movement in it. Five more doses to go. Next post will be Friday July 29th.
God is great and is the One who deserves the credit for this!
Bob
I did a search for clinical trials using Velcade and came up with 8 of them. I asked Dr. Popa to scan them and see if any look viable for me. Barring that Char and I will probably go with the Velcade 'out of pocket' treatments for now and and appeal to the insurance company for payment. I want to sit down with the doctor and plot out where we are with the cancer and what constitutes success with the Velcade. What and how frequent will we test for efficacy.
Additionally the radiation appears to be having a positive effect on the right leg and I am getting some movement in it. Five more doses to go. Next post will be Friday July 29th.
God is great and is the One who deserves the credit for this!
Bob
Thursday, July 21, 2005
Sorry I will be posting on Friday
No post today
Tuesday, July 19, 2005
Dr. Popa is speechless...P2
On Monday Charlotte and I visited with Dr. Popa regarding further Chemo treatment in lieu of the recent MRI results. To say Dr. Popa is awe struck by the test results would be an understatement. She asked if she looked like a fool. She reminded us that not just she, but Dr. Bierman (UNMC oncologist specializing in Burkitts), were in total
agreement regarding my prognosis. Dr. Popa said she 'never expected to see me again' because I was going to deteriorate so quickly. She just returned from 3 weeks in Romania. The doctor is taken back not only by the results from the Lumbar region but the incredible reversal of the disease. She never believed that the Thoracic area tumors would be 'smaller' in size with some of them even gone now. Additionally the
bone marrow element regeneration is compelling. She wanted to know how many times a day we prayed and what our secret was. We told her '...It is no secret what God can do...'
We have been on the prayer lists of many churches and persons and we thank all of of you for your support and ask for your continued prayers.
As for treatment, I will be receiving 10 dosages of radiation for my iliac bone area in hopes of pushing back the tumor bothering my right leg. Chemo is still up in the air for now.
I have a VA Agent Orange appointment scheduled for Wednesday and I will be trying to get assigned a primary care provider there. Once that is done, I can receive care from the hospital. I will be looking into the possibility of Velcade. This is a drug that seems to have good results in holding back the spread of some cancers. The problem is that Tricare won't pay for it. It is my understanding that they will pay for the administration of the drug but not the $960 dosage cost. The treatment is 4 doses over two weeks every 21 days. So roughly a cost of $4000 every month. If I don't come up with the drug in the next week or so there are a couple of other drug options available to look at.
Well that is about all for now. I will update the Blog Thursday. We will be in Kansas City this weekend.
Cheers!
Bob
agreement regarding my prognosis. Dr. Popa said she 'never expected to see me again' because I was going to deteriorate so quickly. She just returned from 3 weeks in Romania. The doctor is taken back not only by the results from the Lumbar region but the incredible reversal of the disease. She never believed that the Thoracic area tumors would be 'smaller' in size with some of them even gone now. Additionally the
bone marrow element regeneration is compelling. She wanted to know how many times a day we prayed and what our secret was. We told her '...It is no secret what God can do...'
We have been on the prayer lists of many churches and persons and we thank all of of you for your support and ask for your continued prayers.
As for treatment, I will be receiving 10 dosages of radiation for my iliac bone area in hopes of pushing back the tumor bothering my right leg. Chemo is still up in the air for now.
I have a VA Agent Orange appointment scheduled for Wednesday and I will be trying to get assigned a primary care provider there. Once that is done, I can receive care from the hospital. I will be looking into the possibility of Velcade. This is a drug that seems to have good results in holding back the spread of some cancers. The problem is that Tricare won't pay for it. It is my understanding that they will pay for the administration of the drug but not the $960 dosage cost. The treatment is 4 doses over two weeks every 21 days. So roughly a cost of $4000 every month. If I don't come up with the drug in the next week or so there are a couple of other drug options available to look at.
Well that is about all for now. I will update the Blog Thursday. We will be in Kansas City this weekend.
Cheers!
Bob
Monday, July 18, 2005
Dr. Popa is speechless...
In fairness I need to consider this next post carefully. My conversation with Dr. Popa served only to reinforce my faith. She doesn't know what to say about me being in her office looking to continue treatment. One of her first questions was "How many times a day do you pray?"
I will update the blog on Tuesday.
Bob
I will update the blog on Tuesday.
Bob
Friday, July 15, 2005
Exciting Turn of Events! God is great!!
On Thursday MRIs were taken of the lumbar and thoracic spine areas. Yesterday the doctor reviewed the results with me. The last MRI was in October of 2004 so comparisons were made against that date's results rather than anything in May.
Quote from the thoracic spine evaluation.... "There is significant improvement in the appearance of the thoracic spine since the previous examination...." The remaining information notes that while the disease is present (abnormal pathology at the position of the T12 spinous process), it is modest in comparison with October's. Further evaluation via a CT scan is recommended.
Quote from the lumbar spine evaluation.... "Multifocal lesions demonstrated October 14, 2004 are again documented but all have decreased in size and at L2 the lesions have disappeared. There is no evidence for new significant pathology in the lumbar spine." The remaining information notes that there is a large soft tissue component involving the right iliac bone extending into the pelvis.
What does this mean? It means I still have cancer and it is terminal. What it also means is that I am NOT ready for Hospice. Most importantly it means God is answering our prayers!!!!! We have prayed everyday that God grant me additional days as he has done for many others so many times before.
About the 23rd of May I was told I was terminal with 1.5 to 2 months to live. We are rapidly approaching the 2 month period and I have some issues with the tumors affecting my 'quality of life' but I am probably NOT going to die in the next week or two from the cancer!!! Do not confuse the grace of God with doctor error. Two oncologists, one a specialist in Lympoma from UNMC, concurred that the tests in May indicted little time and no hope left. When asked about going back to Ohio for visitation I was told "Sooner better than later" because the cancer was moving rapidly. I was turned over to hospice to die 'peacefully'.
Where do I go from here????
First, I will receive radiation treatment today for the tumor pressing on the nerves mentioned above. This should help with the right leg pain and movement. I currently do not have control over all my right leg muscles. Secondly I will meet on Monday with Dr. Popa to discuss receiving chemo-therapy again. I will not be pursuing clinical trials at this time. Dr. Hartman noted, with a grin, that he had drugs I haven't heard of yet. In a nutshell, I am going to re-enter chemo treatment for the disease.
Be sure not to jump to conclusions. We are not going for a 'cure' as the disease in my case appears incurable. The cancer will probably win one day but it is the one day that we will be working on. We, the doctors and I, are going to focus on quality and extension of life and I can accept dying of cancer in about 15-20 years from now :) As before my days are numbered only by God and his hand is on this whole situation. Charlotte and I thank God daily for each day He grants us and we also thank Him for those of you who are supporting us. May God bless you.
Next update Monday the 18th :)
Bob
Quote from the thoracic spine evaluation.... "There is significant improvement in the appearance of the thoracic spine since the previous examination...." The remaining information notes that while the disease is present (abnormal pathology at the position of the T12 spinous process), it is modest in comparison with October's. Further evaluation via a CT scan is recommended.
Quote from the lumbar spine evaluation.... "Multifocal lesions demonstrated October 14, 2004 are again documented but all have decreased in size and at L2 the lesions have disappeared. There is no evidence for new significant pathology in the lumbar spine." The remaining information notes that there is a large soft tissue component involving the right iliac bone extending into the pelvis.
What does this mean? It means I still have cancer and it is terminal. What it also means is that I am NOT ready for Hospice. Most importantly it means God is answering our prayers!!!!! We have prayed everyday that God grant me additional days as he has done for many others so many times before.
About the 23rd of May I was told I was terminal with 1.5 to 2 months to live. We are rapidly approaching the 2 month period and I have some issues with the tumors affecting my 'quality of life' but I am probably NOT going to die in the next week or two from the cancer!!! Do not confuse the grace of God with doctor error. Two oncologists, one a specialist in Lympoma from UNMC, concurred that the tests in May indicted little time and no hope left. When asked about going back to Ohio for visitation I was told "Sooner better than later" because the cancer was moving rapidly. I was turned over to hospice to die 'peacefully'.
Where do I go from here????
First, I will receive radiation treatment today for the tumor pressing on the nerves mentioned above. This should help with the right leg pain and movement. I currently do not have control over all my right leg muscles. Secondly I will meet on Monday with Dr. Popa to discuss receiving chemo-therapy again. I will not be pursuing clinical trials at this time. Dr. Hartman noted, with a grin, that he had drugs I haven't heard of yet. In a nutshell, I am going to re-enter chemo treatment for the disease.
Be sure not to jump to conclusions. We are not going for a 'cure' as the disease in my case appears incurable. The cancer will probably win one day but it is the one day that we will be working on. We, the doctors and I, are going to focus on quality and extension of life and I can accept dying of cancer in about 15-20 years from now :) As before my days are numbered only by God and his hand is on this whole situation. Charlotte and I thank God daily for each day He grants us and we also thank Him for those of you who are supporting us. May God bless you.
Next update Monday the 18th :)
Bob
Friday, July 08, 2005
Five possible clinical trials
NEW:
I just had a conversation with Dr. Hartman (senior partner of the oncology clinic where I am being seen). We discussed my current situation and where I am headed. He is going to keep me in the hospital and will be running some tests to see why my mobility issue popped up. He wants to treat it now and look at trials later. His slant is to restart treatment for my current cancer and work on 1. Quality of life and 2. Extension of time issues. I think he, Charlotte and I are in agreement on this. Once I get the information on the clinical trials he is going to look at them and see if he thinks I should pursue them further. He doesn't seem to be a fan of trials, for a number of reasons, and doesn't like having his patients leave his care. He is a guy who doesn't mess around and I like his straight forward approach. I will keep you updated.
Well it looks like we are going to go with the morphine pills to control the pain in the legs from the tumors. In addition, I will probably get an MRI next week to see where and how big the tumors are now. That information will dictate our next moves (radiation, steroid, etc). In addition I will be contacting the VA about Velcade or other options over there.
As for clinical trials, Dr. Bierman found 5 to start with. Two are in Chicago, one in Washington State, one in St Louis and one at Case Western Reserve in Cleveland. I will be attempting to contact them on Monday to see what the requirements of participation are.
I will update on Tuesday after calling the 5 areas.
Cheers!
Bob
I just had a conversation with Dr. Hartman (senior partner of the oncology clinic where I am being seen). We discussed my current situation and where I am headed. He is going to keep me in the hospital and will be running some tests to see why my mobility issue popped up. He wants to treat it now and look at trials later. His slant is to restart treatment for my current cancer and work on 1. Quality of life and 2. Extension of time issues. I think he, Charlotte and I are in agreement on this. Once I get the information on the clinical trials he is going to look at them and see if he thinks I should pursue them further. He doesn't seem to be a fan of trials, for a number of reasons, and doesn't like having his patients leave his care. He is a guy who doesn't mess around and I like his straight forward approach. I will keep you updated.
Well it looks like we are going to go with the morphine pills to control the pain in the legs from the tumors. In addition, I will probably get an MRI next week to see where and how big the tumors are now. That information will dictate our next moves (radiation, steroid, etc). In addition I will be contacting the VA about Velcade or other options over there.
As for clinical trials, Dr. Bierman found 5 to start with. Two are in Chicago, one in Washington State, one in St Louis and one at Case Western Reserve in Cleveland. I will be attempting to contact them on Monday to see what the requirements of participation are.
I will update on Tuesday after calling the 5 areas.
Cheers!
Bob
Thursday, July 07, 2005
Tough day
Events of the day led me to an earlier posting than I had first planned.
The last couple of days my right leg has been bothering me at night. A cramp like ache develops, about 8-10 pm at night, in the calf or thigh muscle which seems to come an go. A tingly sensation and a sense of circultion loss was felt which is what led to the blood clot check the prior Tuesday. After 'walking it out' in the morning, the day usually goes pretty well however normal walking has been getting more difficult. This morning the pain became unbearable and even centered at times in the kneecap. About 4 am this morning, while climbing the stairs to the bedroom, I found my right leg literally dropping out from under me. The kneecap the center of great pain. I spent an hour or so on the floor, with Charlotte by my side, attempting to find some way to stop a major cramping and pain assault. Heating pad, elevation, ibuprofren, massage........ nothing seemed to work!
I crawled in agony to the living room couch. I couldn't stand or kneel and no position seemed to soothe the leg. Finally I spoke with the staff at the oncology clinic in an attempt to find some method of relief. While I had morphine and oxycodone in the house, I didn't want to take a chance mixing too many pain relievers without medical advice first. I was directed to take both the morphine and oxycodone and see how that helped. Additionally, Charlotte and I noticed my right knee and foot had a swollen and reddish appearance. We decided to go into the hospital.
After visiting with doctors and running a few simple movement tests of the right leg, it is believed that tumors have placed pressure upon some nerves affecting the right leg and various muscles. I am currently in the hospital and am receiving a morphine drip which seems to go a long ways in easing the pain. On Friday we will discuss a number of ideas to include a 'take home morphine drip' application, possible steroid or other chemical injections near the tumor/nerve contacts or even a pill type morphine application. I will also hopefully get an update on the clinical trial search which will impact how we proceed from here. At this time I must be careful not to take something that would disqualify me from a trial.
I will update the blog on Friday as to our decision. Until then remember that God is good. He got me through the day with some very real choices for a solution to the leg pain.
The last couple of days my right leg has been bothering me at night. A cramp like ache develops, about 8-10 pm at night, in the calf or thigh muscle which seems to come an go. A tingly sensation and a sense of circultion loss was felt which is what led to the blood clot check the prior Tuesday. After 'walking it out' in the morning, the day usually goes pretty well however normal walking has been getting more difficult. This morning the pain became unbearable and even centered at times in the kneecap. About 4 am this morning, while climbing the stairs to the bedroom, I found my right leg literally dropping out from under me. The kneecap the center of great pain. I spent an hour or so on the floor, with Charlotte by my side, attempting to find some way to stop a major cramping and pain assault. Heating pad, elevation, ibuprofren, massage........ nothing seemed to work!
I crawled in agony to the living room couch. I couldn't stand or kneel and no position seemed to soothe the leg. Finally I spoke with the staff at the oncology clinic in an attempt to find some method of relief. While I had morphine and oxycodone in the house, I didn't want to take a chance mixing too many pain relievers without medical advice first. I was directed to take both the morphine and oxycodone and see how that helped. Additionally, Charlotte and I noticed my right knee and foot had a swollen and reddish appearance. We decided to go into the hospital.
After visiting with doctors and running a few simple movement tests of the right leg, it is believed that tumors have placed pressure upon some nerves affecting the right leg and various muscles. I am currently in the hospital and am receiving a morphine drip which seems to go a long ways in easing the pain. On Friday we will discuss a number of ideas to include a 'take home morphine drip' application, possible steroid or other chemical injections near the tumor/nerve contacts or even a pill type morphine application. I will also hopefully get an update on the clinical trial search which will impact how we proceed from here. At this time I must be careful not to take something that would disqualify me from a trial.
I will update the blog on Friday as to our decision. Until then remember that God is good. He got me through the day with some very real choices for a solution to the leg pain.
Sunday, July 03, 2005
Clinical trials possible?
Well it has been an interesting week and I am learning about the topic of Clinical Trials.
Initially, Dr. Bierman suggested I take four doses of Velcade in an attempt to slow down my cancer spread. Velcade has been shown to increase the life span (by 2-3 months) of Multiple Myeloma (sic) patients. Multiple Myeloma is an incurable cancer. Tricare nixed that idea and the drug is about $4,000 a dose. I decided to select this option as a possible third choice of action. There is no evidence that this drug will work with Lymphoma. It is merely a shot in the dark. In addition, taking this drug could prevent me from taking any other course of action as described below.
On Friday I visited with Dr. Bierman at UNMC about a phase 1 clinical trial. Essentially it is an attempt to determine the highest safe dose of a chemical that can be given to persons with non-Hodgkin's lymphoma (in this case). There is no guarantee that you will get the dose required to eliminate the cancer, if the specific drug even has that capability. You are extensively tested prior to and after administration of the drug. If it is found that the dose received was too little, there is no promise a followup dosage will be administered. In reviewing the consent form it appears that all costs associated with participating in the study would be picked up by the drug company. Participating in this trial is my second choice. It may be that participating in this trial would prevent me from going with my second choice, a phase 2 trial.
In talking with the DOD (Department of Defense) cancer trial specialist, it was suggested that I look for a phase 2 trial. Basically a phase 2 trial is conducted once a treatment is settled upon (dose, time, number of administrations, etc) but before a 'test' group is used for comparison purposes. This means a subject receives what is believed to be a successful treatment. The DOD person said I could go anywhere in the country for the trial and they would fund most if not all of the cost. Dr. Bierman is going to investigate if any phase 2 trials are available. There are usually a number of restrictions regarding when your last radiation, chemo, longevity, disease recurrance, etc happen so we will have to see what is available. I will be in touch with his office by this next Thursday.
On the upside, while Dr. Bierman re-emphasized his belief my disease is incurable, he said not to give any validity to the first life expectancy guess of 1.5 to 2 months. He said I looked very good and seem to be doing well so it is hard to say how much longer I might have. The doctor said that although the test results indicated the disease was on the move, when he first agreed that hospice was the best course, I am handling it very well and he no longer sees hospice as a valid choice at this time. He also noted that there are miracles all the time. In truth, except for the leg pain which I keep medicated for I am really doing very well.
Charlotte and I have said from the beginning that God knows the date of my death and that is who we put our trust in. Until that day, we will move forward with normal lives only a little more focused on our love for each other, our family and our friends. We will continue to seek out alternatives that God puts before us and thank him daily for the day he has given us. That God gives me one more day is a blessing that I treasure!
God be with you. My next update will be Friday, July 8th unless something special pops up.
Bob
Initially, Dr. Bierman suggested I take four doses of Velcade in an attempt to slow down my cancer spread. Velcade has been shown to increase the life span (by 2-3 months) of Multiple Myeloma (sic) patients. Multiple Myeloma is an incurable cancer. Tricare nixed that idea and the drug is about $4,000 a dose. I decided to select this option as a possible third choice of action. There is no evidence that this drug will work with Lymphoma. It is merely a shot in the dark. In addition, taking this drug could prevent me from taking any other course of action as described below.
On Friday I visited with Dr. Bierman at UNMC about a phase 1 clinical trial. Essentially it is an attempt to determine the highest safe dose of a chemical that can be given to persons with non-Hodgkin's lymphoma (in this case). There is no guarantee that you will get the dose required to eliminate the cancer, if the specific drug even has that capability. You are extensively tested prior to and after administration of the drug. If it is found that the dose received was too little, there is no promise a followup dosage will be administered. In reviewing the consent form it appears that all costs associated with participating in the study would be picked up by the drug company. Participating in this trial is my second choice. It may be that participating in this trial would prevent me from going with my second choice, a phase 2 trial.
In talking with the DOD (Department of Defense) cancer trial specialist, it was suggested that I look for a phase 2 trial. Basically a phase 2 trial is conducted once a treatment is settled upon (dose, time, number of administrations, etc) but before a 'test' group is used for comparison purposes. This means a subject receives what is believed to be a successful treatment. The DOD person said I could go anywhere in the country for the trial and they would fund most if not all of the cost. Dr. Bierman is going to investigate if any phase 2 trials are available. There are usually a number of restrictions regarding when your last radiation, chemo, longevity, disease recurrance, etc happen so we will have to see what is available. I will be in touch with his office by this next Thursday.
On the upside, while Dr. Bierman re-emphasized his belief my disease is incurable, he said not to give any validity to the first life expectancy guess of 1.5 to 2 months. He said I looked very good and seem to be doing well so it is hard to say how much longer I might have. The doctor said that although the test results indicated the disease was on the move, when he first agreed that hospice was the best course, I am handling it very well and he no longer sees hospice as a valid choice at this time. He also noted that there are miracles all the time. In truth, except for the leg pain which I keep medicated for I am really doing very well.
Charlotte and I have said from the beginning that God knows the date of my death and that is who we put our trust in. Until that day, we will move forward with normal lives only a little more focused on our love for each other, our family and our friends. We will continue to seek out alternatives that God puts before us and thank him daily for the day he has given us. That God gives me one more day is a blessing that I treasure!
God be with you. My next update will be Friday, July 8th unless something special pops up.
Bob
