Pete finished the 3rd of 5 tomotherapy treatments today. The weather was absolutely horrid - pouring rain and windy, with some pretty heavy-duty wind gusts.
On Friday, I had decided to put his treatment time to good use and went for a walk around the outside of the medical complex. The hospital is about 1/4 mile from the ocean, so I walked in that direction but it was pretty cold and windy so I walked back to the hospital proper and as I passed the 6 story parking garage I had an inspiration. I'll walk the garage! I went up, down and up again. Since I was running out of time I went down the stairs and was back to the radiation waiting room before Pete came out.
Considering today's weather, I headed for the garage as soon as Pete was called in by the technician. This time I went up and down, then up the stairs and down the ramp. I just kept repeating the cycle until I had used about 35 min. The timing was perfect because I walked back to the radiation waiting room and was only seated for about 5 min when Pete came in.
Pete had placed a call to Dr. K, his oncologist at MSKCC, before we left this morning. Shortly after we were back home she returned his call. She told him that he could have the CT scan done locally rather than driving up to Basking Ridge. There needs to be a few days break between the last radiation and the scan, so if he can set it up for some time next week that would work out well since he's scheduled to resume chemo the week after that (Feb 9).
Monday, January 25, 2010
Friday, January 22, 2010
2 Down, 3 to Go - January 22, 2010
Thursday was Pete's first radiation treatment. The entire procedure took just under an hour and part of the time was set up/preparation. When he came out he seemed a bit unsettled and explained that he wasn't fully prepared for it. He's not claustrophobic, but it seemed to be a similar type of situation. They placed the "mask" over his face and locked/clamped it to the frame under his head. He said it was so tight they had a difficult time getting it over his face and had to use quite a bit of force to engage the locks. It was quite obvious how tight it was fastened because when he came out his entire face (forehead, cheeks, chin) reminded me of one of those monster movie sea creatures because the diamond-shaped impressions in his skin resembled scales. The ones on his cheeks were the first to fade, the ones on his forehead were there for quite some time.
His head must be totally immobilized because it's critical for the targeted radiation to hit the exact locations that the physicist & radiologist have determined are the most likely to be harboring stray cancer cells. It must be an unnerving and disconcerting feeling to have your head locked in place as he described. That combined with not really knowing what to expect with the radiation seemed to have raised his level of anxiety quite a bit. I certainly don't blame him for feeling uneasy and tense.
We met with the nurse and then with Dr. W2 afterward and both recommended he take an anti-anxiety pill (ex: Xanax) before each subsequent treatment.
Today he had his second round of radiation. He took a pill beforehand and it seemed to be much less stressful for him. In fact he said that he was even relaxed enough to doze off for a bit of the time, so that's a good thing. The whole procedure again took a little less than an hour. He again emerged with those scaley looking diamond shapes etched into his face.
So far there have not been any adverse after-effects. Most of the information I've gleaned about radiation is that, much like chemo, it is cumulative and you are more likely to experience those effects after completing a number of treatments. Since he does have the weekend as a break between doses, and there are only 3 more treatments scheduled (Monday, Tuesday & Wednesday) he will hopefully be able to avoid any unpleasantness. Of course, he is also taking prescribed steroids and something for his stomach, so with those additions he'll just be a bit tired in the end, which is one result that seems to be pretty consistent following these types of treatments.
Chemo treatment start date has been changed to Feb 9. Still waiting to get a call from MSKCC regarding the CT scan, and scheduling it to be done at their facility in Basking Ridge as was supposed to be done months ago. Also still waiting for results of EEG. Those were supposed to be ready this past Wednesday. Not happy at all with the neurologist.
His head must be totally immobilized because it's critical for the targeted radiation to hit the exact locations that the physicist & radiologist have determined are the most likely to be harboring stray cancer cells. It must be an unnerving and disconcerting feeling to have your head locked in place as he described. That combined with not really knowing what to expect with the radiation seemed to have raised his level of anxiety quite a bit. I certainly don't blame him for feeling uneasy and tense.
We met with the nurse and then with Dr. W2 afterward and both recommended he take an anti-anxiety pill (ex: Xanax) before each subsequent treatment.
Today he had his second round of radiation. He took a pill beforehand and it seemed to be much less stressful for him. In fact he said that he was even relaxed enough to doze off for a bit of the time, so that's a good thing. The whole procedure again took a little less than an hour. He again emerged with those scaley looking diamond shapes etched into his face.
So far there have not been any adverse after-effects. Most of the information I've gleaned about radiation is that, much like chemo, it is cumulative and you are more likely to experience those effects after completing a number of treatments. Since he does have the weekend as a break between doses, and there are only 3 more treatments scheduled (Monday, Tuesday & Wednesday) he will hopefully be able to avoid any unpleasantness. Of course, he is also taking prescribed steroids and something for his stomach, so with those additions he'll just be a bit tired in the end, which is one result that seems to be pretty consistent following these types of treatments.
Chemo treatment start date has been changed to Feb 9. Still waiting to get a call from MSKCC regarding the CT scan, and scheduling it to be done at their facility in Basking Ridge as was supposed to be done months ago. Also still waiting for results of EEG. Those were supposed to be ready this past Wednesday. Not happy at all with the neurologist.
Tuesday, January 19, 2010
One Step at a Time - January 19, 2010
I didn't go with Pete to the medical (chemo) oncologist on Monday. His father went with him.
The radiation begins this Thursday and the fifth and final session will be the following Wednesday. He will resume chemo treatments on Feb 10. The doctor gave him a prescription for a CT scan so that will get done some time between now and the start of chemo.
Pete said he'll be calling his MSKCC oncologist today (Tues) to make certain that she's apprised of what is going on down here and also to ascertain whether he should have the scan done at MSKCC. He and I talked about the lung surgery and the plan has been, and still is, to have that performed at MSKCC when the time comes.
For anyone dealing with cancer, either as a patient, caregiver or even if you just know someone who has been diagnosed with the disease, I'd like to recommend an excellent book, "I’m Not Lance". The author, Scott P. Alcott, was diagnosed with sarcoma at age 40 and after his initial diagnosis received copies of "It’s Not About the Bike" by Lance Armstrong. Scott’s book, also a firsthand account of a cancer patient, provides exceptional insight into what goes on physically, emotionally and practically as he describes “Life in Cancerville” as experienced by an average guy-next-door as opposed to someone with celebrity status.
All proceeds from Scott's book go to the non-profit organization "Sarcoma Alliance" which is working to improve the life of sarcoma patients through research, support and financial assistance.
The radiation begins this Thursday and the fifth and final session will be the following Wednesday. He will resume chemo treatments on Feb 10. The doctor gave him a prescription for a CT scan so that will get done some time between now and the start of chemo.
Pete said he'll be calling his MSKCC oncologist today (Tues) to make certain that she's apprised of what is going on down here and also to ascertain whether he should have the scan done at MSKCC. He and I talked about the lung surgery and the plan has been, and still is, to have that performed at MSKCC when the time comes.
For anyone dealing with cancer, either as a patient, caregiver or even if you just know someone who has been diagnosed with the disease, I'd like to recommend an excellent book, "I’m Not Lance". The author, Scott P. Alcott, was diagnosed with sarcoma at age 40 and after his initial diagnosis received copies of "It’s Not About the Bike" by Lance Armstrong. Scott’s book, also a firsthand account of a cancer patient, provides exceptional insight into what goes on physically, emotionally and practically as he describes “Life in Cancerville” as experienced by an average guy-next-door as opposed to someone with celebrity status.
All proceeds from Scott's book go to the non-profit organization "Sarcoma Alliance" which is working to improve the life of sarcoma patients through research, support and financial assistance.
Friday, January 15, 2010
Beginning to Move Forward Again - January 15, 2010
Pete has an appointment with Dr. W, the medical oncologist, Monday morning. Hopefully they will send him for a CT scan of his lungs.
His first radiation treatment is set for Thursday. It will run about an hour per day for 5 consecutive days, the second dose will be on Friday and then Monday, Tuesday and Wednesday next week will complete it.
Since he now knows the radiation schedule we may be able to find out when the chemo starts up again at Monday's appointment.
He's still waiting to find out about the EEG results.
His first radiation treatment is set for Thursday. It will run about an hour per day for 5 consecutive days, the second dose will be on Friday and then Monday, Tuesday and Wednesday next week will complete it.
Since he now knows the radiation schedule we may be able to find out when the chemo starts up again at Monday's appointment.
He's still waiting to find out about the EEG results.
Wednesday, January 13, 2010
No Word Yet on Start of Radiation - January 13, 2010
Pete had his EEG this morning. We, including the neurologist (not the same as the neurosurgeon), don't really expect it to show anything abnormal. They told him he should be getting a call about the results in a couple of days.
There has been no word yet on when they intend to begin radiation. The radiation oncologist, Dr. W2, and the medical physicist have to meet sometime this week to discuss, plan and set up for the treatments. It's pretty delicate so I imagine it's best if they take their time and get it set up as correctly and accurately as possible.
Pete and I are both anxious to get the radiation started so that he can get back to the chemo. We were talking this morning after breakfast and we both feel that it would be good to request a CT scan of his lungs be done before he starts the chemo again. It's been so long since his last scan it seems that it would not provide a reasonable comparison for a future scan.
Pete has been having bad headaches off and on, most severe upon awakening, but they do subside as the day goes on and the pain pills take effect. He has also been having some tremors in his hands that come and go. He mentioned both to the neurologist when we were in to see him last week, but he didn't seem to be too concerned with either. Frankly, neither of us were very impressed with this doctor. He's the first one we've dealt with through all of this that sort of left me a bit turned off. Pete said that if he has to go back to a neurologist at some later date he'd rather try to find a different doctor.
Back to the headaches and tremors, it was suggested that Pete start journaling and keep track of when and what is going on so that we may be able to find some cause and effect for these things. Sounds like a good idea he should start putting into practice.
Maybe because the surgery went through so quickly it seems that things are now moving incredibly slowly by comparison.
There has been no word yet on when they intend to begin radiation. The radiation oncologist, Dr. W2, and the medical physicist have to meet sometime this week to discuss, plan and set up for the treatments. It's pretty delicate so I imagine it's best if they take their time and get it set up as correctly and accurately as possible.
Pete and I are both anxious to get the radiation started so that he can get back to the chemo. We were talking this morning after breakfast and we both feel that it would be good to request a CT scan of his lungs be done before he starts the chemo again. It's been so long since his last scan it seems that it would not provide a reasonable comparison for a future scan.
Pete has been having bad headaches off and on, most severe upon awakening, but they do subside as the day goes on and the pain pills take effect. He has also been having some tremors in his hands that come and go. He mentioned both to the neurologist when we were in to see him last week, but he didn't seem to be too concerned with either. Frankly, neither of us were very impressed with this doctor. He's the first one we've dealt with through all of this that sort of left me a bit turned off. Pete said that if he has to go back to a neurologist at some later date he'd rather try to find a different doctor.
Back to the headaches and tremors, it was suggested that Pete start journaling and keep track of when and what is going on so that we may be able to find some cause and effect for these things. Sounds like a good idea he should start putting into practice.
Maybe because the surgery went through so quickly it seems that things are now moving incredibly slowly by comparison.
Thursday, January 7, 2010
Next: An EEG - January 07, 2010
This morning Dr. E, the neurosurgeon, removed the staples and said the incision is healing nicely. Then it was over to the hospital for the stealth MRI and CT scans. The "mask" to hold his head in position while undergoing the sterotactic tomotherapy was molded during the CT. Pete lay on the CT table with his head resting in a plastic form. The technician took a U-shaped frame that surrounded what looked like a piece of mesh. He placed this heated plastic mesh over Pete's face and stretched it down until the U-shaped frame met the plastic form behind his head and secured it there. As it cooled it hardened. This mask will be placed over his head and secured each time he goes in for the radiation treatments so that the beam is focused at exactly the same place each time.
Because the neurosurgeon felt that the tumor was causing seizures which in turn were causing the blind spot/flashing lights that Pete had been seeing, he prescribed an anti-seizure medication. However, he did not want to take Pete off of that med until he was evaluated by a medical neurologist. So tomorrow (Fri) morning Pete has an appointment with a neurologist and will most likely need to have an EEG. He will not be cleared to drive without this doctor's "ok".
We do not yet have a date for the start of radiation, but we have been assured that it will be sometime in the next week or two.
Once again, I'd like to thank everyone for all the prayers, good wishes and support you've offered us. Thank you all so much.
Because the neurosurgeon felt that the tumor was causing seizures which in turn were causing the blind spot/flashing lights that Pete had been seeing, he prescribed an anti-seizure medication. However, he did not want to take Pete off of that med until he was evaluated by a medical neurologist. So tomorrow (Fri) morning Pete has an appointment with a neurologist and will most likely need to have an EEG. He will not be cleared to drive without this doctor's "ok".
We do not yet have a date for the start of radiation, but we have been assured that it will be sometime in the next week or two.
Once again, I'd like to thank everyone for all the prayers, good wishes and support you've offered us. Thank you all so much.
Monday, January 4, 2010
Consult With Radiological Oncologist - January 04, 2010
First the biopsy results: Yes, the tumor in his brain has the same pathology (MFH sarcoma or Malignant Fibrous Histiocytoma) as the primary tumor removed from his arm 1 year ago and those found in his lungs in July. No surprise.
Dr. W-2 gave him 3 options: 1) no radiation, 2) stereotactic radiation, or 3) whole brain radiation. He explained each option. I’m going to try to describe what he told us to as accurately as I possibly can.
No radiation - The CT/MRI scans that were done immediately following the surgery showed the entire tumor had been removed. The problem here is that, just as the surgeon had explained immediately following the surgery, malignant cells can still remain but are too small to be detected by the scans. These cells can remain dormant and never change (unlikely), or they can take hold where they are, or migrate elsewhere, and establish another malignant mass (either or both of these are likely). He explained that the surgeon, having visually inspected the area, indicated recommendation to proceed to radiation therapy because he felt one of the “margins” was not sufficient to be confident that all cells were removed.
Sterotactic radiation – This is like GPS for radiation. The very concentrated beam is directed to the exact site of the tumor and radiates that area and a specified margin around the area, limiting the amount of radiation toxicity administered to a small area healthy tissue, a very good thing. He gave 2 choices for this treatment: standard or tomotherapy. Standard is administered over the course of a single day. It requires that the patient to be immobilized (essentially having your head in a brace with screws that go through the skin and contact the skull in about 4 strategic locations so it doesn’t move). It is uncomfortable, but it’s over in 1 long day. Tomotherapy uses a plastic mask that is molded to the patient’s head. It does not require clamps or screws so can be removed and replaced, assuring the patient’s head is in the same location as it was before. This way, they administer short doses of sterotactic radiation over the course of 5 days.
Whole brain – This is exactly what it sounds like. He explained that this therapy is recommended when there are multiple sites throughout the brain. The radiation is not as strong, and therefore may not be as effective, particularly with sarcoma which is fairly radiation resistant.
Pete opted for the Sterotactic Tomotherapy, so we moved to the next stage: preparation.
Thursday morning he has an appointment with the surgeon to remove the 24 staples that run up the back of his head. These have to be removed to allow for undistorted “stealth” MRI/CT images that will provide computerized, focused aim for the beam of radiation. These scans are scheduled for Thursday afternoon. I’ve changed the bandage several times and everything seems to be healing very nicely, but the surgeon will have the final word as to whether it has healed enough to begin.
Dr. W-2 gave him 3 options: 1) no radiation, 2) stereotactic radiation, or 3) whole brain radiation. He explained each option. I’m going to try to describe what he told us to as accurately as I possibly can.
No radiation - The CT/MRI scans that were done immediately following the surgery showed the entire tumor had been removed. The problem here is that, just as the surgeon had explained immediately following the surgery, malignant cells can still remain but are too small to be detected by the scans. These cells can remain dormant and never change (unlikely), or they can take hold where they are, or migrate elsewhere, and establish another malignant mass (either or both of these are likely). He explained that the surgeon, having visually inspected the area, indicated recommendation to proceed to radiation therapy because he felt one of the “margins” was not sufficient to be confident that all cells were removed.
Sterotactic radiation – This is like GPS for radiation. The very concentrated beam is directed to the exact site of the tumor and radiates that area and a specified margin around the area, limiting the amount of radiation toxicity administered to a small area healthy tissue, a very good thing. He gave 2 choices for this treatment: standard or tomotherapy. Standard is administered over the course of a single day. It requires that the patient to be immobilized (essentially having your head in a brace with screws that go through the skin and contact the skull in about 4 strategic locations so it doesn’t move). It is uncomfortable, but it’s over in 1 long day. Tomotherapy uses a plastic mask that is molded to the patient’s head. It does not require clamps or screws so can be removed and replaced, assuring the patient’s head is in the same location as it was before. This way, they administer short doses of sterotactic radiation over the course of 5 days.
Whole brain – This is exactly what it sounds like. He explained that this therapy is recommended when there are multiple sites throughout the brain. The radiation is not as strong, and therefore may not be as effective, particularly with sarcoma which is fairly radiation resistant.
Pete opted for the Sterotactic Tomotherapy, so we moved to the next stage: preparation.
Thursday morning he has an appointment with the surgeon to remove the 24 staples that run up the back of his head. These have to be removed to allow for undistorted “stealth” MRI/CT images that will provide computerized, focused aim for the beam of radiation. These scans are scheduled for Thursday afternoon. I’ve changed the bandage several times and everything seems to be healing very nicely, but the surgeon will have the final word as to whether it has healed enough to begin.
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