This will be my last post to the blog at this site. Either Marissa or I will be updating from this point on another site, CaringBridge.org. The exact web link is www.caringbridge.org/visit/bradleydycus. You can also get to the site by just going to CaringBridge.org and typing my name (bradleydycus) in the "Visit A Website" box. When you visit the site there will be a check box that you can mark if you would like to receive email updates.
I am sorry for the inconvenience of switching websites. After the last post by Marissa, many of you sent me emails requesting to be notified by email when a new post is made. I have done my best to try to set this up on the blog but I have been unsuccessful. CaringBridge should be easier for us to update and should also eliminate you all checking the blog frequently just to find that I have not updated. Thank you for checking in and for all of your prayers and support, and please visit the new site.
Thursday, December 3, 2009
Monday, November 23, 2009
Chemo Rounds 19 & 20
Well, there’s not much to tell since the last update. I guess no news is good news in this case. I started the 19th round of chemo on October 12. So far, the chemo does not seem to be too harsh. I am having some aches and pains but I don’t really think they are side effects of the new chemo. More than likely I am just dealing with the side effects of 18 months of chemo.
I have been having some trouble keeping my blood counts up. The dose that I should have received on October 19 was delayed until Thursday, October 22 to allow my white count to recover. By delaying that week, my infusion was moved to Thursday the next week as well. When I went in on October 29, my white count was borderline. My doctor decided to go ahead with the chemo and supplement my blood count with Neupogen for a few days. On Sunday, November 1, I came down with a low grade fever, indicating that my white count had dropped to zero and infection had set in. I have been on antibiotics since, which have kept my fever under control. Since my counts were so low, I did not begin chemo again until Monday, November 16.
During my 2 ½ weeks off from chemo aside from having neutropenic fever, I also had been having severe back pain. The pain started low and would radiate up to the base of my skull. Every breath that I took would be accompanied by a throbbing, intense pain. I was beginning to get worried because the pain was very reminiscent of my hip and nerve related pain when I was first diagnosed. Dr. D’Amato, my local oncologist, decided to schedule an MRI of the spine and brain for as soon as possible. On Friday, November 13 I underwent a three hour long MRI of the entire spine and brain. I was not prepared for such a long test which was not only long, but uncomfortable, and almost unbearable. They told me during the MRI that it should have been scheduled for several different days instead of one long test on one day. I could certainly see why they normally schedule it that way, however after it was all over with and I made it through the whole test I was just glad to have it done with. We left our house at about 12:30 that day and did not return home until 7 pm that evening.
On Monday, November 16 my white blood cell count was extremely high at 24. This was because of the Neupogen injections Marissa had been giving me for the seven days prior. We discussed with Dr. D’Amato keeping my counts high before the chemo infusion, so when they fall they do not fall so low that I would continue to get neutropenic fever. So before every infusion on Monday, Marissa will begin my Neupogen shots the Friday, Saturday, and Sunday before. I am having tremendous amounts of muscle pain and fatigue and I can only think that the Neupogen is contributing to these symptoms. During this doctor’s appointment, we also received the results from my MRI. Fortunately, everything looks good and it showed only a little arthritis in my lower spine. To try and help alleviate these symptoms, we are trying Celebrex. I was happy to add this to my daily regimen of medicines as it is a COX II Inhibitor, this basically means that it helps to block a cancer cell pathway. My list of medicines is getting longer and longer, we are trying to add other drugs that also have a double benefit like the Celebrex and Lovastatin. My only real complaint is that it is hard to manage all of these medicines, some must be taken alone, some with food, some on an empty stomach, so fitting them all into one day is proving to be challenging and I must become more diligent about it. I will also say that Marissa and I have been extremely pleased lately with my local oncologist. She is very receptive to new possible beneficial drugs that I suggest, and she helps to start me on these therapies.
At this point in the post, I (Marissa) will be taking over. Bradley has given this task over to me. He said he no longer enjoys posting as it is a constant reminder that he is sick. He said he also feels that people are no longer reading. He said people’s support for him is like when people watch a marathon, they want to be there for the beginning and the end but not the entire race in between. Unfortunately, I do not know what to say about this, as I agree with his thinking. Regardless, I will be doing the posting from here on out if not for us, than for those that do read that are also fighting their own cancer battles. They, all too well know about the in between days that carry on from one to the next. I know it is helpful to us that they know how we feel, so maybe it will help them in their own day to day struggles.
On Saturday, November 21 my whole family came over and everyone helped with our huge leaf situation. It took all day, but our house and yard look great. Everyone was a huge help, even the nephews. Bradley felt well enough to enjoy being outside and take our nephews for rides on the riding mower. I think Bradley had a really great time and it was great for him to be outside on a beautiful day.
Today is Monday, November 23 and it is Bradley’s second dose out of this round of chemo. He will have one more infusion next Monday and then we head to New York for scans. Bradley’s scans are scheduled for Wednesday, December 2. Please remember Bradley in your prayers. This is a scary time for us with not knowing the effectiveness of the new chemo. Bradley has also been doing chemo for a year and a half straight. Dr. D’Amato told us children can usually tolerate 2 years of chemo, adults less. I think the chemo is beginning to take its toll on Bradley’s body and his physical and emotional strength, understandably so. The trial in NY still does not have a start date as far as we know. So a major question we will be asking in NY is if it is time to pursue other treatments, perhaps radiation. If we had never been told about this trial, Bradley would have done total abdominal radiation. However, the trial is supposed to essentially take the place of the total abdominal radiation. However, he has been waiting 10 months since his surgery for this trial, and we still do not know if we are any closer to it starting. I do not want Bradley to have any more side effects brought on by total abdominal radiation, but at the same time radiation works best when there is minimal to no disease. Since I do not know how much longer he can continue to do chemo and we have no trial start date, where does that leave us? I suppose thinking about radiation (he can still participate in the trial even with radiation) or trying the Interferon and Lovastatin treatment (since he is still doing chemo he is currently taking only the Lovastatin). Please pray for clean scans, a trial start date, and guidance for where we need to be and what we need to be doing for Bradley’s health care.
The next few weeks will be very busy for us. Of course Thanksgiving is Thursday, but on Wednesday my sister Meaghan will be delivering our niece, Ella. We are very excited at her arrival and to finally have a niece. Then of course is our trip to New York the following week. When we return my high school friend, Jenny, and her husband Steve will be coming to visit us. Bradley and I were supposed to have attended their wedding in August, but we were unable to. We were very disappointed, but we are so happy they are coming to visit us. This will be the first time they have been to see us in our Atlanta home, as we have not seen each other in 3 years. After that we will be traveling to celebrate Christmas with the family. We know it is a busy time for everyone, and I will try to post as I am able. Thank you to those who continue to read, support and pray for Bradley and myself.
I have been having some trouble keeping my blood counts up. The dose that I should have received on October 19 was delayed until Thursday, October 22 to allow my white count to recover. By delaying that week, my infusion was moved to Thursday the next week as well. When I went in on October 29, my white count was borderline. My doctor decided to go ahead with the chemo and supplement my blood count with Neupogen for a few days. On Sunday, November 1, I came down with a low grade fever, indicating that my white count had dropped to zero and infection had set in. I have been on antibiotics since, which have kept my fever under control. Since my counts were so low, I did not begin chemo again until Monday, November 16.
During my 2 ½ weeks off from chemo aside from having neutropenic fever, I also had been having severe back pain. The pain started low and would radiate up to the base of my skull. Every breath that I took would be accompanied by a throbbing, intense pain. I was beginning to get worried because the pain was very reminiscent of my hip and nerve related pain when I was first diagnosed. Dr. D’Amato, my local oncologist, decided to schedule an MRI of the spine and brain for as soon as possible. On Friday, November 13 I underwent a three hour long MRI of the entire spine and brain. I was not prepared for such a long test which was not only long, but uncomfortable, and almost unbearable. They told me during the MRI that it should have been scheduled for several different days instead of one long test on one day. I could certainly see why they normally schedule it that way, however after it was all over with and I made it through the whole test I was just glad to have it done with. We left our house at about 12:30 that day and did not return home until 7 pm that evening.
On Monday, November 16 my white blood cell count was extremely high at 24. This was because of the Neupogen injections Marissa had been giving me for the seven days prior. We discussed with Dr. D’Amato keeping my counts high before the chemo infusion, so when they fall they do not fall so low that I would continue to get neutropenic fever. So before every infusion on Monday, Marissa will begin my Neupogen shots the Friday, Saturday, and Sunday before. I am having tremendous amounts of muscle pain and fatigue and I can only think that the Neupogen is contributing to these symptoms. During this doctor’s appointment, we also received the results from my MRI. Fortunately, everything looks good and it showed only a little arthritis in my lower spine. To try and help alleviate these symptoms, we are trying Celebrex. I was happy to add this to my daily regimen of medicines as it is a COX II Inhibitor, this basically means that it helps to block a cancer cell pathway. My list of medicines is getting longer and longer, we are trying to add other drugs that also have a double benefit like the Celebrex and Lovastatin. My only real complaint is that it is hard to manage all of these medicines, some must be taken alone, some with food, some on an empty stomach, so fitting them all into one day is proving to be challenging and I must become more diligent about it. I will also say that Marissa and I have been extremely pleased lately with my local oncologist. She is very receptive to new possible beneficial drugs that I suggest, and she helps to start me on these therapies.
At this point in the post, I (Marissa) will be taking over. Bradley has given this task over to me. He said he no longer enjoys posting as it is a constant reminder that he is sick. He said he also feels that people are no longer reading. He said people’s support for him is like when people watch a marathon, they want to be there for the beginning and the end but not the entire race in between. Unfortunately, I do not know what to say about this, as I agree with his thinking. Regardless, I will be doing the posting from here on out if not for us, than for those that do read that are also fighting their own cancer battles. They, all too well know about the in between days that carry on from one to the next. I know it is helpful to us that they know how we feel, so maybe it will help them in their own day to day struggles.
On Saturday, November 21 my whole family came over and everyone helped with our huge leaf situation. It took all day, but our house and yard look great. Everyone was a huge help, even the nephews. Bradley felt well enough to enjoy being outside and take our nephews for rides on the riding mower. I think Bradley had a really great time and it was great for him to be outside on a beautiful day.
Today is Monday, November 23 and it is Bradley’s second dose out of this round of chemo. He will have one more infusion next Monday and then we head to New York for scans. Bradley’s scans are scheduled for Wednesday, December 2. Please remember Bradley in your prayers. This is a scary time for us with not knowing the effectiveness of the new chemo. Bradley has also been doing chemo for a year and a half straight. Dr. D’Amato told us children can usually tolerate 2 years of chemo, adults less. I think the chemo is beginning to take its toll on Bradley’s body and his physical and emotional strength, understandably so. The trial in NY still does not have a start date as far as we know. So a major question we will be asking in NY is if it is time to pursue other treatments, perhaps radiation. If we had never been told about this trial, Bradley would have done total abdominal radiation. However, the trial is supposed to essentially take the place of the total abdominal radiation. However, he has been waiting 10 months since his surgery for this trial, and we still do not know if we are any closer to it starting. I do not want Bradley to have any more side effects brought on by total abdominal radiation, but at the same time radiation works best when there is minimal to no disease. Since I do not know how much longer he can continue to do chemo and we have no trial start date, where does that leave us? I suppose thinking about radiation (he can still participate in the trial even with radiation) or trying the Interferon and Lovastatin treatment (since he is still doing chemo he is currently taking only the Lovastatin). Please pray for clean scans, a trial start date, and guidance for where we need to be and what we need to be doing for Bradley’s health care.
The next few weeks will be very busy for us. Of course Thanksgiving is Thursday, but on Wednesday my sister Meaghan will be delivering our niece, Ella. We are very excited at her arrival and to finally have a niece. Then of course is our trip to New York the following week. When we return my high school friend, Jenny, and her husband Steve will be coming to visit us. Bradley and I were supposed to have attended their wedding in August, but we were unable to. We were very disappointed, but we are so happy they are coming to visit us. This will be the first time they have been to see us in our Atlanta home, as we have not seen each other in 3 years. After that we will be traveling to celebrate Christmas with the family. We know it is a busy time for everyone, and I will try to post as I am able. Thank you to those who continue to read, support and pray for Bradley and myself.
Saturday, October 17, 2009
A Few Pictures
May 1, 2008...About 2 weeks before I was diagnosed
February 8, 2009...Just before surgery
October 17, 2009...Today, Marissa's Birthday Party
Wednesday, October 7, 2009
New Chemo
The scans that were done on September 21 showed a lymph node in my abdomen that has swollen to 1.4cm (just over ½ inch). Dr. Chou believes that the lymph node is just inflamed from the chemotherapy, but the rest of the team is not as optimistic. They say that it is very likely malignant tumor growth. To try and figure out which it is, they have put me on a new chemotherapy regimen. The new chemo will not be as hard on my stomach, so any inflammation that the old chemo caused should be gone with the next set of scans. If it is malignant tumor growth, the fact that it is there means that it had become resistant to the chemo that I was taking, and the new chemo will have a better chance of controlling its growth. Regardless, through trial and error, the next set of scans should provide valuable information.
There is an option to surgically remove the suspect lymph node, especially since it appears to be a localized occurrence. Of course, I am still waiting on the 8h9 monoclonal antibody clinical trial to start, which will required a surgical implant of the antibody. Because the trial should begin in the next few weeks, (hopefully not months), if I decide to have it removed, I will wait and have it removed at the beginning of the trial. I just don’t want the risk of an additional surgery, when I have a planned surgery coming up soon.
The surgery that was planned for September 22 to replace the line in my chest was delayed until September 25. By delaying the surgery, I was able to get a mediport in place of the central line that I had. They perform essentially the same function, but the mediport is implanted below the skin, which allows me to take a shower and swim. With the old line, I couldn’t swim at all, to shower I had to wrap my chest in plastic, and Marissa had to change my bandages at least once a week in addition to daily flushes with heparin. Needless to say, I am very excited about having the mediport. I am still having an unusual amount of pain in my neck and shoulder from the surgery, but hopefully it will be gone in a few days.
I am also excited about my new chemo. I know that sounds a little weird, but let me explain. I will be taking two drugs, Vinorelbine and Cyclophosphamide. The Vinorelbine is given just once per week, for three weeks, then one week off. The drug is administered via IV push, which means that it is from a syringe and the nurse just pushes it in slowly over 10 minutes. The Cyclophosphamide is just a pill that I take at home every day. Not being at the hospital all day every day is very exciting. This new chemo is also supposed to be very mild, so side effects should be very tolerable. Also, if necessary, this combination can be taken for as much as two years.
I was supposed to start the chemo on Monday, October 5, but my white blood cell count is too low. They are delaying me another week to recover. Hopefully they will come up soon and I can start the new chemo on Monday, October 12.
As always, thanks for all of the prayers, and thanks for your support at the SL100 tailgate fundraiser Friday night at the DCHS football game.
There is an option to surgically remove the suspect lymph node, especially since it appears to be a localized occurrence. Of course, I am still waiting on the 8h9 monoclonal antibody clinical trial to start, which will required a surgical implant of the antibody. Because the trial should begin in the next few weeks, (hopefully not months), if I decide to have it removed, I will wait and have it removed at the beginning of the trial. I just don’t want the risk of an additional surgery, when I have a planned surgery coming up soon.
The surgery that was planned for September 22 to replace the line in my chest was delayed until September 25. By delaying the surgery, I was able to get a mediport in place of the central line that I had. They perform essentially the same function, but the mediport is implanted below the skin, which allows me to take a shower and swim. With the old line, I couldn’t swim at all, to shower I had to wrap my chest in plastic, and Marissa had to change my bandages at least once a week in addition to daily flushes with heparin. Needless to say, I am very excited about having the mediport. I am still having an unusual amount of pain in my neck and shoulder from the surgery, but hopefully it will be gone in a few days.
I am also excited about my new chemo. I know that sounds a little weird, but let me explain. I will be taking two drugs, Vinorelbine and Cyclophosphamide. The Vinorelbine is given just once per week, for three weeks, then one week off. The drug is administered via IV push, which means that it is from a syringe and the nurse just pushes it in slowly over 10 minutes. The Cyclophosphamide is just a pill that I take at home every day. Not being at the hospital all day every day is very exciting. This new chemo is also supposed to be very mild, so side effects should be very tolerable. Also, if necessary, this combination can be taken for as much as two years.
I was supposed to start the chemo on Monday, October 5, but my white blood cell count is too low. They are delaying me another week to recover. Hopefully they will come up soon and I can start the new chemo on Monday, October 12.
As always, thanks for all of the prayers, and thanks for your support at the SL100 tailgate fundraiser Friday night at the DCHS football game.
Wednesday, September 16, 2009
Rounds 17 and 18
Well my insurance company finally came through and approved the drug I needed to stimulate stem cell production. I believe that I have now successfully collected enough stem cells to allow me into the 8h9 clinical trial. My doctor’s told me that they wanted to harvest 7 million cells but that 2 million was the bare minimum. After six days of collection, I was able to produce 3.4 million cells. Hopefully this will be enough, as the protocol for the clinical trial has still not been released, but they told me that I would not be able to collect any more cells because I have had so much chemotherapy.
I returned to New York as planned. I had a little surgery on Wednesday, August 12, to insert a leukapheresis catheter in my groin. I had originally been told I was going to have my chest catheter replaced, but they later said that the only vein in my body that was large enough to support the stem cell collection was in the groin. The second collection began immediately after my surgery, and ended up lasting three more days. Because of the temporary catheter in my groin, I was kept inpatient until Friday, August 14. Fortunately, I was able to stick around just long enough for the candy cart to come by my room on the pediatric floor. Marissa and I stocked up for the long drive home starting Saturday morning. We got back home on Sunday evening, August 16, Just in time to start chemo on Monday morning.
I started my 17th round of chemo on August 17th. This round, like the last few was relatively uneventful. I have had some mild nausea, but most of my side effects are now attributed to the steroids that I am taking. Decadron (dexamethasone) is given with my chemo to help prevent nausea, allergic reactions, and to stimulate my appetite. I have recently learned that taking this drug at high doses for a long period of time can cause Cushing’s syndrome. The effects are completely reversible when I stop taking it, but symptoms are severe swelling, back pain, bruising and thinning skin, fatigue, and insomnia, all of which I have. I spoke with my doctors about it before I started my 18th round and they drastically reduced the dose. Hopefully I will see some results in the next few weeks.
As Marissa and I were looking at the calendar, we noticed that we would be in NY for medical treatment on our 5th Anniversary. That is not very romantic, so we decided to take a spontaneous trip to Nashville on September 1st to celebrate. We spent the night at Hotel Indigo near Vanderbilt and went to the Grand Ole Opry. Marissa seemed to really enjoy it, and although I’m not much on country music, it turned out to be a fantastic evening.
Because we were so close, and feeling relatively well on my off week, we decided to visit my family in West Tennessee for the remainder of the week. Our last visit there was in April. Because it was more or less a spur of the moment trip, we caught everyone of guard, but that made the visit a little more relaxing. I was able to go watch my nephew’s play football, Hunter on Thursday night for Northview Middle School and Dawson played Friday night for Dyer County High School. Saturday, of course, was Tennessee football, and a fabulous family dinner. Sunday morning, September 6th we returned back to Atlanta.
After we got back home, Marissa was changing my bandages on my chest catheter and noticed that once again all of the sutures have pulled out. The catheter had pulled out of my chest about 2 inches. Tuesday morning I had an x-ray of my chest to see if it was in a safe position to receive chemo. They said that I could receive this round, but that it would have to be replaced immediately afterwards. I will be returning to NY this weekend for another set of scans on Monday. Dr. Laquaglia will be replacing my chest catheter Tuesday morning, September 22. I should get scan results back on Tuesday or Wednesday. Until then, we pray.
Thanks for taking the time to check in on me and for continuing to pray for me. I have no doubt that is why I am still here.
I returned to New York as planned. I had a little surgery on Wednesday, August 12, to insert a leukapheresis catheter in my groin. I had originally been told I was going to have my chest catheter replaced, but they later said that the only vein in my body that was large enough to support the stem cell collection was in the groin. The second collection began immediately after my surgery, and ended up lasting three more days. Because of the temporary catheter in my groin, I was kept inpatient until Friday, August 14. Fortunately, I was able to stick around just long enough for the candy cart to come by my room on the pediatric floor. Marissa and I stocked up for the long drive home starting Saturday morning. We got back home on Sunday evening, August 16, Just in time to start chemo on Monday morning.
I started my 17th round of chemo on August 17th. This round, like the last few was relatively uneventful. I have had some mild nausea, but most of my side effects are now attributed to the steroids that I am taking. Decadron (dexamethasone) is given with my chemo to help prevent nausea, allergic reactions, and to stimulate my appetite. I have recently learned that taking this drug at high doses for a long period of time can cause Cushing’s syndrome. The effects are completely reversible when I stop taking it, but symptoms are severe swelling, back pain, bruising and thinning skin, fatigue, and insomnia, all of which I have. I spoke with my doctors about it before I started my 18th round and they drastically reduced the dose. Hopefully I will see some results in the next few weeks.
As Marissa and I were looking at the calendar, we noticed that we would be in NY for medical treatment on our 5th Anniversary. That is not very romantic, so we decided to take a spontaneous trip to Nashville on September 1st to celebrate. We spent the night at Hotel Indigo near Vanderbilt and went to the Grand Ole Opry. Marissa seemed to really enjoy it, and although I’m not much on country music, it turned out to be a fantastic evening.
Because we were so close, and feeling relatively well on my off week, we decided to visit my family in West Tennessee for the remainder of the week. Our last visit there was in April. Because it was more or less a spur of the moment trip, we caught everyone of guard, but that made the visit a little more relaxing. I was able to go watch my nephew’s play football, Hunter on Thursday night for Northview Middle School and Dawson played Friday night for Dyer County High School. Saturday, of course, was Tennessee football, and a fabulous family dinner. Sunday morning, September 6th we returned back to Atlanta.
After we got back home, Marissa was changing my bandages on my chest catheter and noticed that once again all of the sutures have pulled out. The catheter had pulled out of my chest about 2 inches. Tuesday morning I had an x-ray of my chest to see if it was in a safe position to receive chemo. They said that I could receive this round, but that it would have to be replaced immediately afterwards. I will be returning to NY this weekend for another set of scans on Monday. Dr. Laquaglia will be replacing my chest catheter Tuesday morning, September 22. I should get scan results back on Tuesday or Wednesday. Until then, we pray.
Thanks for taking the time to check in on me and for continuing to pray for me. I have no doubt that is why I am still here.
Monday, August 3, 2009
Stem Cell Harvest and Scans
As always, it has been a long time since my last post. A lot has happened since then, but not much has changed the last few weeks. We have asked many questions, of many doctors, and received very few answers. My most recent scans were performed on July 22 in New York. The scans show no new tumor growth, only the same questionable spots from previous scans that are still believed to be scar tissue. I am very thankful for these results, as significant tumor growth would make me ineligible for the 8h9 clinical trial that I have been anxiously awaiting.
Before the scans, beginning June 8, I began my 15th round of chemotherapy. It was very uneventful, as are most rounds recently, which is a very good thing. My 16th cycle of chemotherapy began on June 29. It too was uneventful. My scans, normally scheduled during my off week between cycles, were not scheduled until July 22. The delay was necessary because my scans were scheduled along with my stem cell harvest to prepare for the 8h9 clinical trial. Because I have had so much chemotherapy, my body is not able to produce enough stem cells for collection. To get around this, I was given a drug called Neupogen (G-CSF). This drug can be given at home, but unfortunately, it is an injectable, meaning Marissa had to give me multiple shots in each arm for 8 days. She did a fantastic job, but she was not thrilled.
My stem cell collection began on July 23. To collect the cells, an oversized IV line is placed in each arm. Blood is drawn out of the body from one arm, run through a centrifuge machine, and then given back through the other arm. Although very little blood is out of the body at one time, over the 5 hour process, the entire volume of the body’s blood is removed three times. Some patients are able to collect their required amount of cells in a single collection. Unfortunately, I was unable do this. I was told that I needed to collect a total of 7 million stem cells. On the first day, I was only able to collect 500,000 cells, or 0.5 million. I went back on Friday, July 24, hoping to collect more cells, but only produced 400,000 that day, giving me a total of 900,000. The facility was closed on Saturday, but open Sunday. On Sunday, I was able to produce only 200,000 stem cells, totaling 1.1 million. I was told that I can only collect for 5 days without taking a break, and after doing the math, it was apparent that I was not going to be able to collect enough cells. On Monday, July 27, my doctors decided to stop collecting. I was told that I needed to take at least a 7 – 10 day break to recover, and that they would attempt to collect again using a different stimulating drug called AMD. They also had trouble during collection finding veins that would hold up to the oversized needles. For the next round of collection, they have decided to replace the central line in my chest with a larger version. For this, they are scheduling surgery and I will, hopefully, only spend one night in the hospital. In the meantime, we are waiting for insurance approval for the AMD and to be scheduled for surgery.
The problem that all of this presents is that I have now been off of chemotherapy for almost a month. I am nervous to go without treatment for so long before entering the 8H9 clinical trial. We are sitting on pins and needles waiting for a phone call from New York, which they tell me will be on Wednesday, August 5. If all goes as planned, I will return to New York for surgery and another collection starting Tuesday, August 11. If my insurance decided not to cover the new drug or waits too long to do so, I will begin chemotherapy on Monday August 10.
This is essentially a repeat of the last post, with a little bit of added drama. As always, I am sorry it took so long to update, but we have been waiting for weeks on these answers, which we still don’t have. Thanks again for your thoughts, prayers, and cards. Thank you, also, to those of you who wished me a happy birthday. I was able to celebrate with Marissa and her mother, Christine, in Knoxville, before returning home on Saturday. I will make a short post, hopefully by the end of this week, when a decision is made about my future schedule.
Before the scans, beginning June 8, I began my 15th round of chemotherapy. It was very uneventful, as are most rounds recently, which is a very good thing. My 16th cycle of chemotherapy began on June 29. It too was uneventful. My scans, normally scheduled during my off week between cycles, were not scheduled until July 22. The delay was necessary because my scans were scheduled along with my stem cell harvest to prepare for the 8h9 clinical trial. Because I have had so much chemotherapy, my body is not able to produce enough stem cells for collection. To get around this, I was given a drug called Neupogen (G-CSF). This drug can be given at home, but unfortunately, it is an injectable, meaning Marissa had to give me multiple shots in each arm for 8 days. She did a fantastic job, but she was not thrilled.
My stem cell collection began on July 23. To collect the cells, an oversized IV line is placed in each arm. Blood is drawn out of the body from one arm, run through a centrifuge machine, and then given back through the other arm. Although very little blood is out of the body at one time, over the 5 hour process, the entire volume of the body’s blood is removed three times. Some patients are able to collect their required amount of cells in a single collection. Unfortunately, I was unable do this. I was told that I needed to collect a total of 7 million stem cells. On the first day, I was only able to collect 500,000 cells, or 0.5 million. I went back on Friday, July 24, hoping to collect more cells, but only produced 400,000 that day, giving me a total of 900,000. The facility was closed on Saturday, but open Sunday. On Sunday, I was able to produce only 200,000 stem cells, totaling 1.1 million. I was told that I can only collect for 5 days without taking a break, and after doing the math, it was apparent that I was not going to be able to collect enough cells. On Monday, July 27, my doctors decided to stop collecting. I was told that I needed to take at least a 7 – 10 day break to recover, and that they would attempt to collect again using a different stimulating drug called AMD. They also had trouble during collection finding veins that would hold up to the oversized needles. For the next round of collection, they have decided to replace the central line in my chest with a larger version. For this, they are scheduling surgery and I will, hopefully, only spend one night in the hospital. In the meantime, we are waiting for insurance approval for the AMD and to be scheduled for surgery.
The problem that all of this presents is that I have now been off of chemotherapy for almost a month. I am nervous to go without treatment for so long before entering the 8H9 clinical trial. We are sitting on pins and needles waiting for a phone call from New York, which they tell me will be on Wednesday, August 5. If all goes as planned, I will return to New York for surgery and another collection starting Tuesday, August 11. If my insurance decided not to cover the new drug or waits too long to do so, I will begin chemotherapy on Monday August 10.
This is essentially a repeat of the last post, with a little bit of added drama. As always, I am sorry it took so long to update, but we have been waiting for weeks on these answers, which we still don’t have. Thanks again for your thoughts, prayers, and cards. Thank you, also, to those of you who wished me a happy birthday. I was able to celebrate with Marissa and her mother, Christine, in Knoxville, before returning home on Saturday. I will make a short post, hopefully by the end of this week, when a decision is made about my future schedule.
Tuesday, June 16, 2009
Clean Scans!
Today is June 17, 2009, time for another long overdue update. The primary objective for our last trip to New York (the week of May 25) was for my latest set of scans. If you will remember from the previous scans (April 13), the results were inconclusive, showing a few areas of “thickening” and also a 1cm spot in my abdomen. I was told this was area for concern but not alarm and the next set of scans should clarify the results.
Fast forward to the May 27th set of scans. The results really were exactly what we were hoping for. The areas of “thickening” were still present, but unchanged in size and location. This reinforces the idea that these areas are just scar tissue left over from surgery and may never go away. The 1cm spot that had caused all of the concern on the last scan was completely gone. For all practical purposes, “Clean Scans!”
The next big step in treatment for me is an upcoming clinical trial in New York called 8h9. It is a phase one clinical trial that is still in the approval stages, but years of research shows lots of promise as a wonderful treatment for my cancer. Because it is a Stage 1 trial and still under development, most of the details regarding the treatment are still under tight wraps. What I have been told is that it “should” be available by the end of summer and treatment will last approximately 3 to 4 weeks. Dr. Chou has convinced me to stay on my current regimen of chemotherapy until the trial is available. After the trial, assuming things go as planned, I would be finished with formal treatment. At that point I plan to start the NeoPlas alternative treatment regimen that would hopefully allow me to return to a normal lifestyle.
As you can imagine, I have had a lot of questions lately regarding my treatment choices. Understandably so, and I am not sure I understand them enough myself to explain, but I will try to do so without getting too technical. Most cancers have what are referred to as tumor markers. This means that with relatively simple tests (blood tests, etc), the amount of cancer activity in the body can be monitored. Unfortunately, I was blessed with a cancer for which no tumor maker has yet been discovered. What this means is that I will never know if all of the cancer in my body is gone. My tumors can only be seen when they become large enough to show up on a CT scan and/or PET scan. Of course, at this point they are already millions, if not billions, of cells. My cancer has also proven that it can double its tumor size in as little as three weeks, growing exponentially.
In short, because I will never be able to prove that I don’t have any remaining cancer cells, I will never be considered to be in “remission”. The term that is used for my cancer is N.E.D., or No Evidence of Disease. All of this combines to make future treatment options very difficult to decide upon, but the general consensus seems to be to take treatment as long as you can tolerate it. I’m almost to that point.
As far as the rest of the update, the last trip to New York was relatively uneventful. The scans were preformed on Wednesday, May 27th. The results came in for the CT scan on Thursday and PET results on Friday. We left New York on Thursday with a slight detour. We headed for Toledo, OH for a visit with Marissa’s grandmother. She had been admitted to the hospital with pneumonia, but is now doing much better. We arrived back in Knoxville late Saturday evening to pick up our dogs.
We learned on Friday that there is a national oncology conference held annually at this time of year, despite my scheduled chemotherapy during the conference. I was told that I had no choice but to delay the schedule and start my next round on Monday, June 8th.
Since my side effects from the previous rounds were relatively mild and controlled, there wasn’t much to discuss with the doctor. I was still having some nosebleeds, so the Avastin was reduced an additional 25%, for a total of 50% dose. I have also been having frequent headaches, so I had an MRI to check for internal bleeding. That test was performed on June 3rd and only a sinus infection showed up on the scan. Also, I had developed a painful rash on the trip back from New York. My first chance to see the doctor about it was June 2nd, about 5 days after I noticed the rash. She diagnosed it at a glance as shingles. Fortunately, they were not as painful for me as I had been lead to believe and have since all but disappeared.
Since then it’s just been back to the same old chemo routine. Last week I had a surprising amount of nausea, but nothing I haven’t been through before. Overall, things really couldn’t be better, considering… Every doctor’s report is better than the previous report. Thanks again for your continued prayers and well wishes. I would not be where I am without them. The next set of scans is tentatively set for the week of July 13th in New York.
Fast forward to the May 27th set of scans. The results really were exactly what we were hoping for. The areas of “thickening” were still present, but unchanged in size and location. This reinforces the idea that these areas are just scar tissue left over from surgery and may never go away. The 1cm spot that had caused all of the concern on the last scan was completely gone. For all practical purposes, “Clean Scans!”
The next big step in treatment for me is an upcoming clinical trial in New York called 8h9. It is a phase one clinical trial that is still in the approval stages, but years of research shows lots of promise as a wonderful treatment for my cancer. Because it is a Stage 1 trial and still under development, most of the details regarding the treatment are still under tight wraps. What I have been told is that it “should” be available by the end of summer and treatment will last approximately 3 to 4 weeks. Dr. Chou has convinced me to stay on my current regimen of chemotherapy until the trial is available. After the trial, assuming things go as planned, I would be finished with formal treatment. At that point I plan to start the NeoPlas alternative treatment regimen that would hopefully allow me to return to a normal lifestyle.
As you can imagine, I have had a lot of questions lately regarding my treatment choices. Understandably so, and I am not sure I understand them enough myself to explain, but I will try to do so without getting too technical. Most cancers have what are referred to as tumor markers. This means that with relatively simple tests (blood tests, etc), the amount of cancer activity in the body can be monitored. Unfortunately, I was blessed with a cancer for which no tumor maker has yet been discovered. What this means is that I will never know if all of the cancer in my body is gone. My tumors can only be seen when they become large enough to show up on a CT scan and/or PET scan. Of course, at this point they are already millions, if not billions, of cells. My cancer has also proven that it can double its tumor size in as little as three weeks, growing exponentially.
In short, because I will never be able to prove that I don’t have any remaining cancer cells, I will never be considered to be in “remission”. The term that is used for my cancer is N.E.D., or No Evidence of Disease. All of this combines to make future treatment options very difficult to decide upon, but the general consensus seems to be to take treatment as long as you can tolerate it. I’m almost to that point.
As far as the rest of the update, the last trip to New York was relatively uneventful. The scans were preformed on Wednesday, May 27th. The results came in for the CT scan on Thursday and PET results on Friday. We left New York on Thursday with a slight detour. We headed for Toledo, OH for a visit with Marissa’s grandmother. She had been admitted to the hospital with pneumonia, but is now doing much better. We arrived back in Knoxville late Saturday evening to pick up our dogs.
We learned on Friday that there is a national oncology conference held annually at this time of year, despite my scheduled chemotherapy during the conference. I was told that I had no choice but to delay the schedule and start my next round on Monday, June 8th.
Since my side effects from the previous rounds were relatively mild and controlled, there wasn’t much to discuss with the doctor. I was still having some nosebleeds, so the Avastin was reduced an additional 25%, for a total of 50% dose. I have also been having frequent headaches, so I had an MRI to check for internal bleeding. That test was performed on June 3rd and only a sinus infection showed up on the scan. Also, I had developed a painful rash on the trip back from New York. My first chance to see the doctor about it was June 2nd, about 5 days after I noticed the rash. She diagnosed it at a glance as shingles. Fortunately, they were not as painful for me as I had been lead to believe and have since all but disappeared.
Since then it’s just been back to the same old chemo routine. Last week I had a surprising amount of nausea, but nothing I haven’t been through before. Overall, things really couldn’t be better, considering… Every doctor’s report is better than the previous report. Thanks again for your continued prayers and well wishes. I would not be where I am without them. The next set of scans is tentatively set for the week of July 13th in New York.
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