Today Rob will have outpatient surgery to have the port removed. Radiation is underway and Rob has already received 4 of the 22 scheduled treatments.
Last week we met with Dr. Garret (the radiation Oncologist) and he informed us that Rob was not a candidate for the tomotherapy radiation. Even though this is a very precise type of radiation, it is 360 degrees, therefore Rob would receive radiation from every angle which would cause both lungs and his heart to receive unnecessary amounts of radiation and put him at great risk for complications and long term side effects.
Dr. Garrett recommended the linear accelerator radiation. This will allow them to choose the angles from which the tumor will receive radiation, protecting the heart and lungs. His left lung will receive some radiation as well as the spine and esophagus, however the dose of radiation to these areas is well within the normal range or tolerated amount. The Dr feels that Rob will not suffer any long-term side effects to the lung and he is not worried about his heart because the ventricles are protected and away from the treament area. Of course, long-term side effects, are possible but Dr. Garrett felt they would be unlikely for Rob. (Thank God!) The possible short-term side effects are fatigue, difficulty swallowing, bad taste in his mouth, and some burning of the skin at the site.
Rob is feeling great right now, the best he has felt in months, and he was ready to get started with radiation. He still becomes tired easily, but he is getting his strength back. At this time, Rob is planning to return to work on March 2nd, although Dr. Garrett said he wanted Rob to be aware of the fatigue radiation can cause and said they would revisit the return to work plan if necessary.
Once treatments are completed, Rob will have another series of scans and blood work 3-6 months after the last treatment. They expect the radiation to take care of the rest of the "mass." It is still unknown if what is left of this tumor is in fact Lymphoma cancer. It could simply be scar tissue, but the risk of not doing radiation and it returning is too great and would be very bad for Rob.
So, we continue along this journey. Some days are great and other days are emotional and difficult for us. I am filled with some anxiety about treatment ending. Right now, Rob is doing something to kill the cancer cells (chemo, radiation, etc) but when treatment ends, then what? I think it will be unsettling to have to wait again, another 3-6 months to know what is happening in Rob's body...to know for sure if radiation worked. BUT, we remain optimistic and find great comfort in the prayers and support from all of you and our faith in God that He will heal Rob and we will soon be able to put some of this behind us.
Rob has been and continues to be amazing, filled with strength and a tremendous amount of courage. The boys are also amazing and pray for Rob every day. Mrs. Spearing (Sam's Kindergarten teacher) tells me that Sam prays for Rob every day in religion class and now has some of the other kids praying for their dad's as well (following Sam's example). Sam is inquisitive and will ask a lot of questions and really think about things. Thomas is filled with excitement and anticipation of Daddy getting well and thinks that each day that Rob comes home from treatment that he is "all better."
Please continue to keep us in your prayers and pray for Rob's complete healing.
Love to all of you.
Susie
Monday, February 23, 2009
Monday, February 9, 2009
Update
Yesterday we met with Dr. Garrett to learn more about the radiation and details of how it will work. Dr. Garrett spent time with us reviewing Rob's PET scan from September in comparison to the PET scan from last week. It was quite amazing to see - actually SEE - the difference in the size of this tumor. The Dr said when he looked at this scan from September, he could not believe that Rob was not having more symptoms in the begininng and suffering from sickness and difficulty breathing. Another testimony to Rob's strength and his body's fight against this thing!
As we were told last week, the tumor has decreased significantly, however radiation is the next sensible step in taking care of the rest of this tumor. The other options are more chemo, which we have been told by both doctors probably would not get rid of the tumor completely and the side effects could be severe and even toxic to his heart, OR do nothing and see what happens. The "do nothing" option doesn't seem appealing to us either, because if the mass that is left is in fact Lymphoma, it will begin growing again rapidly and Rob would then need a bone marrow transplant. As Dr. Garrett said, "The best chance to cure this, is the first chance." So...on to radiation...
Dr. Garrett said the biggest risk with radiation will be Rob's left lung. The tumor is positioned very near and somewhat over the lung, so the radiation area will encompass part of the lung. How much radiation will the lung actually receive? We do not know yet. It is my understanding that the lung can tolerate (if you will) some amount of radiation, but too much could cause serious long term problems. Tomorrow Rob will undergo a simulation which will define the treatment area and the areas that need to be protected from the radiation - a treatment plan. He will have small marks on his skin to identify the treatment area and the marks will be used each time to make sure his body is in the correct position. This treatment plan will also tell the Dr exactly what dose of radiation Rob will receive and give us a better understanding of the amount of radiation the lung may receive. The radiation dose will need to be balanced between being high enough to kill the cancer cells yet low enough to limit damage to healthy cells. The treatment plan will also identify the areas that need to be "shielded" or "protected."
Today, Rob went in for his echocardiogram and tomorrow we hope to know the results of that test as well as have the treatment plan completed. Rob is due to begin treatment next week.
More details to come as we receive them....
Please continue to keep us in your prayers. It has been and continues to be "quite the adventure" as Rob puts it.
Love and Blessings,
Susie
As we were told last week, the tumor has decreased significantly, however radiation is the next sensible step in taking care of the rest of this tumor. The other options are more chemo, which we have been told by both doctors probably would not get rid of the tumor completely and the side effects could be severe and even toxic to his heart, OR do nothing and see what happens. The "do nothing" option doesn't seem appealing to us either, because if the mass that is left is in fact Lymphoma, it will begin growing again rapidly and Rob would then need a bone marrow transplant. As Dr. Garrett said, "The best chance to cure this, is the first chance." So...on to radiation...
Dr. Garrett said the biggest risk with radiation will be Rob's left lung. The tumor is positioned very near and somewhat over the lung, so the radiation area will encompass part of the lung. How much radiation will the lung actually receive? We do not know yet. It is my understanding that the lung can tolerate (if you will) some amount of radiation, but too much could cause serious long term problems. Tomorrow Rob will undergo a simulation which will define the treatment area and the areas that need to be protected from the radiation - a treatment plan. He will have small marks on his skin to identify the treatment area and the marks will be used each time to make sure his body is in the correct position. This treatment plan will also tell the Dr exactly what dose of radiation Rob will receive and give us a better understanding of the amount of radiation the lung may receive. The radiation dose will need to be balanced between being high enough to kill the cancer cells yet low enough to limit damage to healthy cells. The treatment plan will also identify the areas that need to be "shielded" or "protected."
Today, Rob went in for his echocardiogram and tomorrow we hope to know the results of that test as well as have the treatment plan completed. Rob is due to begin treatment next week.
More details to come as we receive them....
Please continue to keep us in your prayers. It has been and continues to be "quite the adventure" as Rob puts it.
Love and Blessings,
Susie
Friday, February 6, 2009
Old Speckled Hen
Such GREAT news G!
Re: Stress... Obviously your doc doesn't know just how cool you are.
It was good seeing you (and Sharples) last weekend. Hopefully, the Old Speckled Hen has continued healing powers. You remain in our thoughts and prayers. Stay Strong.
Peace.
BB
Re: Stress... Obviously your doc doesn't know just how cool you are.
It was good seeing you (and Sharples) last weekend. Hopefully, the Old Speckled Hen has continued healing powers. You remain in our thoughts and prayers. Stay Strong.
Peace.
BB
BIG News Today
As most of you know, Rob and I met with Dr. Braden today to learn the results of all of the scans. As you can imagine we are on brain overload right now with medical information and my hand is cramped from the amount of notes I have taken! Here is the Cliff version....
Here is what we know at this time. On September 27th, the tumor measured 18 x 9 cm with an SUV (uptake value) of 19. (That simply means the business or activity taking place with the generation of cells and glucose absorbtion) Anything with a value over 2 is considered suspicious. On February 3rd, the results of the scans indicate the tumor now measures 4 x 3.5cm and has an SUV of 3.3. This is GREAT news!!!! However, what is left, needs to be "mopped up." It is hard to say if what they are looking at is completely dead or dying tissue or IF there is some Lymphoma still lingering within this very small mass. Dr. Braden said he felt that since the SUV was over 2 it warranted further action. The radiation team agreed as did the radiologist that viewed Rob's scans.
So, we met with Dr. Peter G. Garrett of the radiation team. Dr. Garrett feels confident that he can hit this tumor with radiation and take care of what is left. He said had radiation been needed in the beginning, it would have been difficult or impossible because of the location near the heart and aortic arch. Now that the tumor is much smaller, he feels that it will be possible to shield the major organs (including the heart) as well as shield some of the surrounding tissue. He seemed very confident and experienced. He has been doing this for 25 years and has practiced in Canada as well. He assured me that this is not the first tumor he has dealt with that has been in a precarious spot nor did he feel that I needed to worry about Rob's heart.
Now what? On Monday we will meet with Dr. Garrett again for a more in depth consultation and a better understanding of how they will pinpoint the location and how the radiation will work exactly. We are also going to be armed with many questions (at least I will be) after a weekend of reading and research. On Tuesday, Rob will have an echocardiogram. The hospital did an EKG and should have done an echo on Rob, so we are still in need of those results to be sure Rob's heart has not suffered any damage from the chemo.
Then, Rob will return to the radiation offices to have his chest area "mapped" so that they can do precise calculation and measurements to pinpoint radiation. THEN, one week from Monday (Feb 16th) he will start radiation. He will have radiation EVERY DAY for 4 or 5 weeks. Radiation will only take a few moments each day and Rob will experience possible (temporary) side effects such as fatigue, skin burns near the site, difficulty in swallowing and just general exhaustion. The long term side effects for Rob's situation will be discussed with us on Monday, although Dr. Garrett said they are uncommon.
It is recommended that during radiation, Rob maintains his weight with a high protein and high fiber diet. He should be able to continue daily activity and return to work in March (as planned), however it is expected that he will be very tired and should make time for rest during the day and get plenty of rest at night.
You might be wondering why surgery isn't an option (we were). Well, this type of cancer - Lymphoma - is a blood tissue cancer. They would never be able to cut out enough cells to get rid of the cancer. Besides that, if it were operable...it would still be very high risk or impossible because of the location.
Once this tumor is gone, Rob will have blood work every 3 months along with additional scans to monitor his LDH levels (indicates rapidly growing cells).
Dr. Braden said it is important we continue to keep a positive attitude, that this cancer IS CURABLE. He complimented Rob on how well he has handled the stress, the physical side effects and just how amazing his entire general state has been through all of this!
Unfortunatly the tumor is not gone, but thankfully we have a game plan, a group of confident doctors and a great support system of friends and family. Right now, Rob is feeling strong and ready to undergo radiation. FYI - his hair is returning, although I really like him bald!
Please continue to remember Rob in prayer as we travel down this new road to recovery.
Love and Blessings,
Susie
“Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus” (Philippians 4:6-7).
Here is what we know at this time. On September 27th, the tumor measured 18 x 9 cm with an SUV (uptake value) of 19. (That simply means the business or activity taking place with the generation of cells and glucose absorbtion) Anything with a value over 2 is considered suspicious. On February 3rd, the results of the scans indicate the tumor now measures 4 x 3.5cm and has an SUV of 3.3. This is GREAT news!!!! However, what is left, needs to be "mopped up." It is hard to say if what they are looking at is completely dead or dying tissue or IF there is some Lymphoma still lingering within this very small mass. Dr. Braden said he felt that since the SUV was over 2 it warranted further action. The radiation team agreed as did the radiologist that viewed Rob's scans.
So, we met with Dr. Peter G. Garrett of the radiation team. Dr. Garrett feels confident that he can hit this tumor with radiation and take care of what is left. He said had radiation been needed in the beginning, it would have been difficult or impossible because of the location near the heart and aortic arch. Now that the tumor is much smaller, he feels that it will be possible to shield the major organs (including the heart) as well as shield some of the surrounding tissue. He seemed very confident and experienced. He has been doing this for 25 years and has practiced in Canada as well. He assured me that this is not the first tumor he has dealt with that has been in a precarious spot nor did he feel that I needed to worry about Rob's heart.
Now what? On Monday we will meet with Dr. Garrett again for a more in depth consultation and a better understanding of how they will pinpoint the location and how the radiation will work exactly. We are also going to be armed with many questions (at least I will be) after a weekend of reading and research. On Tuesday, Rob will have an echocardiogram. The hospital did an EKG and should have done an echo on Rob, so we are still in need of those results to be sure Rob's heart has not suffered any damage from the chemo.
Then, Rob will return to the radiation offices to have his chest area "mapped" so that they can do precise calculation and measurements to pinpoint radiation. THEN, one week from Monday (Feb 16th) he will start radiation. He will have radiation EVERY DAY for 4 or 5 weeks. Radiation will only take a few moments each day and Rob will experience possible (temporary) side effects such as fatigue, skin burns near the site, difficulty in swallowing and just general exhaustion. The long term side effects for Rob's situation will be discussed with us on Monday, although Dr. Garrett said they are uncommon.
It is recommended that during radiation, Rob maintains his weight with a high protein and high fiber diet. He should be able to continue daily activity and return to work in March (as planned), however it is expected that he will be very tired and should make time for rest during the day and get plenty of rest at night.
You might be wondering why surgery isn't an option (we were). Well, this type of cancer - Lymphoma - is a blood tissue cancer. They would never be able to cut out enough cells to get rid of the cancer. Besides that, if it were operable...it would still be very high risk or impossible because of the location.
Once this tumor is gone, Rob will have blood work every 3 months along with additional scans to monitor his LDH levels (indicates rapidly growing cells).
Dr. Braden said it is important we continue to keep a positive attitude, that this cancer IS CURABLE. He complimented Rob on how well he has handled the stress, the physical side effects and just how amazing his entire general state has been through all of this!
Unfortunatly the tumor is not gone, but thankfully we have a game plan, a group of confident doctors and a great support system of friends and family. Right now, Rob is feeling strong and ready to undergo radiation. FYI - his hair is returning, although I really like him bald!
Please continue to remember Rob in prayer as we travel down this new road to recovery.
Love and Blessings,
Susie
“Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus” (Philippians 4:6-7).
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