This week kept getting worse for Steve as the effects of his radiation and chemotherapy accumulated. By Wednesday, he threw up three times. His weight was 256, down 48 pounds from the start. He also had routine blood work done which showed his platelets on the low side. The normal low number is 100,000 and Steve's was 86,000. It's expected to drop due to the chemotherapy, but.... now the good news, are you ready for it?..... Dr. Hu said Steve could stop the chemotherapy yesterday!! Mostly because his lab values were low but also because he's feeling poorly. And it only cuts him short by a few pills.
Whoopee!! Intensive chemotherapy is now officially over! Now, there is still maintenance chemotherapy to complete but that's another story. Tomorrow, Steve and Terry go to Dr. Hu's office and expect to receive all the details about maintenance and the follow-up MRI's. Tomorrow morning is also Steve's last day of scheduled radiation therapy so by about eleven o'clock the whole kit and caboodle will be over.
Party Time! Haha! (except Steve is too tired to party yet. We'll take a raincheck on that party and celebrate quietly for now.)
Showing posts with label Radiation schedule. Show all posts
Showing posts with label Radiation schedule. Show all posts
Thursday, March 22, 2012
Saturday, March 3, 2012
Oomphless
Steve and Terry saw Dr. Hu yesterday as scheduled. Terry called me this morning with how the last week went and with a medication update:
Steve's nausea and fatigue have progressively worsened. He has very little energy and has stopped all unnecessary activity. He is constantly nauseated but mostly keeps his food down. Eating small, frequent meals is best. Crackers and low-sugar apple juice have become his best friend. He lost two pounds this week. He still has excess saliva and acid reflex which contribute to the nausea and he has antihistamine to take when he needs to dry him up, but Steve has gotten tired of taking pills and doesn't take this one as often as his symptoms might warrant. Dr. Hu added prescription strength Prilosec (40mg) to help settle his stomach (in addition to the Maalox). He also added 10mg Compazine, three times a day to be taken with the Zofran to help control the nausea. Steve had lab tests done on his blood and all was as expected.
Steve continues with Monday thru Friday radiation in the mornings. I asked about how big an area the radiation covers. It is aimed at the location of the original tumor plus two centimeters around it. Steve now has a special, metal-free lotion, Radiaguard, to apply to his scalp because of skin redness. Terry rubs it in after the radiation treatment and before bed. She says his skin has been getting flakey and this helps. She's careful around the scar from the surgery. It's now scabbing and starting to fall off, and his hair is starting to thin. Not big amounts, but she notices it, especially around the areas where the radiation machine aims.
I wonder if Steve will end up bald. Wouldn't that be a funny sight?
They are now half way through the chemo/radiation schedule. The last day is March 23rd, unless they tack on the two pills Steve missed earlier to the end.
Steve's job has been taking the boys to school in the mornings. He enjoys doing it and he mostly has enough energy in the morning. Then they go to radiation and Steve gets tired after that. He has not exercised for a while now. He lies around, resting, watching TV, reading his Kindle or the computer and checking e-mail. Their younger son has a school concert next week Steve is hoping to attend. Adam is a tootsie roll in a Willy Wonka style play. How cute is that? Their older son has a concert at Disneyland two weeks afterwards, but they're not planning on seeing that one because it would be too exhausting for Steve. Isn't that sad?
For those of you who know Terry, she received accolades from the boys elementary school for her years of service as a volunteer. She was honored at an award ceremony Tuesday as Volunteer of the Year. I know it was well deserved. She also had a brief scare after a mammogram this week and had to have an ultrasound to confirm she did not have breast cancer. Fortunately, her doctors expedited the process so she didn't have to worry too long before she received her negative results. She has been a trooper helping Steve and supporting her whole family. I'm glad that scare didn't trouble her for any longer.
Steve's nausea and fatigue have progressively worsened. He has very little energy and has stopped all unnecessary activity. He is constantly nauseated but mostly keeps his food down. Eating small, frequent meals is best. Crackers and low-sugar apple juice have become his best friend. He lost two pounds this week. He still has excess saliva and acid reflex which contribute to the nausea and he has antihistamine to take when he needs to dry him up, but Steve has gotten tired of taking pills and doesn't take this one as often as his symptoms might warrant. Dr. Hu added prescription strength Prilosec (40mg) to help settle his stomach (in addition to the Maalox). He also added 10mg Compazine, three times a day to be taken with the Zofran to help control the nausea. Steve had lab tests done on his blood and all was as expected.
Steve continues with Monday thru Friday radiation in the mornings. I asked about how big an area the radiation covers. It is aimed at the location of the original tumor plus two centimeters around it. Steve now has a special, metal-free lotion, Radiaguard, to apply to his scalp because of skin redness. Terry rubs it in after the radiation treatment and before bed. She says his skin has been getting flakey and this helps. She's careful around the scar from the surgery. It's now scabbing and starting to fall off, and his hair is starting to thin. Not big amounts, but she notices it, especially around the areas where the radiation machine aims.
I wonder if Steve will end up bald. Wouldn't that be a funny sight?
They are now half way through the chemo/radiation schedule. The last day is March 23rd, unless they tack on the two pills Steve missed earlier to the end.
Steve's job has been taking the boys to school in the mornings. He enjoys doing it and he mostly has enough energy in the morning. Then they go to radiation and Steve gets tired after that. He has not exercised for a while now. He lies around, resting, watching TV, reading his Kindle or the computer and checking e-mail. Their younger son has a school concert next week Steve is hoping to attend. Adam is a tootsie roll in a Willy Wonka style play. How cute is that? Their older son has a concert at Disneyland two weeks afterwards, but they're not planning on seeing that one because it would be too exhausting for Steve. Isn't that sad?
For those of you who know Terry, she received accolades from the boys elementary school for her years of service as a volunteer. She was honored at an award ceremony Tuesday as Volunteer of the Year. I know it was well deserved. She also had a brief scare after a mammogram this week and had to have an ultrasound to confirm she did not have breast cancer. Fortunately, her doctors expedited the process so she didn't have to worry too long before she received her negative results. She has been a trooper helping Steve and supporting her whole family. I'm glad that scare didn't trouble her for any longer.
Sunday, January 22, 2012
Recovering From Surgery and Preparing for the Next Steps
Well, Steve breezed through surgery better than anyone expected. He was home Friday after Wednesday brain surgery with all visible tumor removed (how great was that?). From what I gathered, hearing snippets from the family, Steve was only on narcotic pain medicine through Saturday as it made him feel confused and sleepy and then Tylenol was able to handle his pain. He felt better every day and had frequent visitors the following week. I understand there is no change in his speech so he manages very well with only rare missing words and certainly near enough to normal that many people wouldn't notice. When I talk to him on the phone, he sounds great. He had the whole week after surgery doctor-free so he spent time with his family and resting and went out to dinner to celebrate our sister, Lesley's birthday.
Last Tuesday, January 17th, it was back to the doctor's. First to Dr. Jethro Hu (does anyone else hear Jethro Tull music when I say that?), the neuro-oncologist at Cedars-Sinai. They talked about the next steps for Steve. There is an experimental trial where, if you qualify, your own blood is taken and made into a vaccine to fight your own tumor. This is to help keep new tumors from regrowing at the tumor site. They took Steve's blood to test for this HLA factor to see if he qualified. They talked about chemotherapy and radiation therapy and the likely schedule with and without the vaccine trial. Dr. Hu also gave Steve permission to drive his car again. He drove part of the way home that day.... the first time in a while! One step closer to normalcy! Dr. Hu discouraged Steve from going back to work until some time after the chemo and radiation treatments are completed. He also began to taper the dosage of Dexamethasone steroid. Every few days he will diminish the dose from 8mg/day down to zero. We loved the Dexamethasone in the beginning because it controlled the swelling inside the brain, but now there is no more tumor to generate swelling and so it is not needed. The side effects of a puffy face have appeared on Steve, so he is pleased to not need it any longer.
Radiation Schedule
Then they went to meet Dr. Nancy Ellerbroeck, the radiologist at Henry Mayo Hospital. She used to work at Cedars-Sinai and has the respect of the radiologists there (who referred Steve to her), but she is located much closer to Steve's house. She will be in charge of Steve's radiation therapy. The way I understand it, first they make a mould of Steve's head, called a mask. This will hold his head still and in the exact same place for each radiation session. Steve is scheduled for next Wednesday to have this mask made. Then they make a "phantom" head to test this new mask with to see if the radiation will be in the right place (mapping the brain again). That takes about another week, so Steve's radiation therapy will start the following week. He will go five days a week to Henry Mayo Hospital, near his house. The session will take about 15 minutes. He has the mask placed and lies still and is irradiated for 7-8 minutes at a time. This lasts for six weeks. The Registered Nurse, Grace, will do most of the work and Dr. Ellerbroeck will see Steve once a week. This is the maximum level of radiation safely allowed for Steve. There is no further radiation scheduled after this six weeks.
Friday, we got the results of the HLA blood test. Steve did NOT have the right kind of marker/HLA thingy to qualify for the vaccine trial. He won't be able to participate in this particular trial. Later on, if the tumor regrows (and I understand they almost always do), he may be able to enroll in other trials for recurrent tumors. We're a little disappointed, but, what can you do? His tumor or blood markers weren't the right kind so there is no choice but to continue moving forward with conventional chemo and radiation. Maybe we can "sour grapes" the situation by saying it probably wouldn't have helped anyway. Plus, with this experiment, only 2/3 of the subjects receive the live vaccine, 1/3 receive placebo, so he may not have received it at all even if he had the right blood.
Chemotherapy Schedule
So, the chemotherapy schedule will be concurrent with the radiation schedule. He will take a Temodar pill once a day, everyday, for 6 weeks. He will follow up with Dr. Hu every 2-3 weeks during this time frame. At the end of those 42 days, he will have one month off. They will do a follow up MRI during that month. Afterwards, there will be a maintenance chemotherapy schedule of 5 pills a month on and off for a year with MRIs interspersed every other month. I'm sure everything is subject to change depending upon actual findings. Stay tuned :)
On a brighter note, the new family room couch, love seat and reclining chair ordered months ago arrived yesterday. Terry likes them. The couch reclines and has a built in cup holder. I'm looking forward to seeing them.
Also, Steve went to a new family physician since they are no longer Kaiser members, a Dr. Thomas (did I get that right?) Cox, who has been Lesley's doctor for many years. Steve has lost 35 pounds since this started. Yikes! What a way to lose weight. Dr. Cox requested Steve's hospital records so he can make proper adjustment to Steve's diabetes medications. They will hear back from him in about a week with any changes to his medications. Steve went back on the treadmill as soon as the surgeon gave him permission after surgery. Steve continues eating a healthy diet with very few sweets.
(By the way, Terry says she has lost 19 pounds since Steve's diagnosis. The Stress Diet really works, but I can't recommend it.)
Last night, according to Terry, Steve awoke about 2 am with cold shivers, lasting about 10 minutes. He was confused for just a minute, probably from a dream (something about a sandwich). It's probably nothing, maybe the steroid taper, maybe Steve's fighting a cold that was going around, maybe some medication. He's been taking Tylenol PM to help sleep through the night. Sometimes we worry too much. Needless to say, Terry watches those little things and we talk about them. Steve's had no trouble today. But, if it happens again Terry will be on the phone to the doctor. Worry warts!
Next week, Steve plans to drive out to work to have lunch with his friends. I bet it feels good to plan a normal activity.
Steve's fiftieth birthday is coming up soon, the first week in February. Maybe he'll be well enough for a good party, if it doesn't last too long. What to you think?
Last Tuesday, January 17th, it was back to the doctor's. First to Dr. Jethro Hu (does anyone else hear Jethro Tull music when I say that?), the neuro-oncologist at Cedars-Sinai. They talked about the next steps for Steve. There is an experimental trial where, if you qualify, your own blood is taken and made into a vaccine to fight your own tumor. This is to help keep new tumors from regrowing at the tumor site. They took Steve's blood to test for this HLA factor to see if he qualified. They talked about chemotherapy and radiation therapy and the likely schedule with and without the vaccine trial. Dr. Hu also gave Steve permission to drive his car again. He drove part of the way home that day.... the first time in a while! One step closer to normalcy! Dr. Hu discouraged Steve from going back to work until some time after the chemo and radiation treatments are completed. He also began to taper the dosage of Dexamethasone steroid. Every few days he will diminish the dose from 8mg/day down to zero. We loved the Dexamethasone in the beginning because it controlled the swelling inside the brain, but now there is no more tumor to generate swelling and so it is not needed. The side effects of a puffy face have appeared on Steve, so he is pleased to not need it any longer.
Radiation Schedule
Then they went to meet Dr. Nancy Ellerbroeck, the radiologist at Henry Mayo Hospital. She used to work at Cedars-Sinai and has the respect of the radiologists there (who referred Steve to her), but she is located much closer to Steve's house. She will be in charge of Steve's radiation therapy. The way I understand it, first they make a mould of Steve's head, called a mask. This will hold his head still and in the exact same place for each radiation session. Steve is scheduled for next Wednesday to have this mask made. Then they make a "phantom" head to test this new mask with to see if the radiation will be in the right place (mapping the brain again). That takes about another week, so Steve's radiation therapy will start the following week. He will go five days a week to Henry Mayo Hospital, near his house. The session will take about 15 minutes. He has the mask placed and lies still and is irradiated for 7-8 minutes at a time. This lasts for six weeks. The Registered Nurse, Grace, will do most of the work and Dr. Ellerbroeck will see Steve once a week. This is the maximum level of radiation safely allowed for Steve. There is no further radiation scheduled after this six weeks.
Friday, we got the results of the HLA blood test. Steve did NOT have the right kind of marker/HLA thingy to qualify for the vaccine trial. He won't be able to participate in this particular trial. Later on, if the tumor regrows (and I understand they almost always do), he may be able to enroll in other trials for recurrent tumors. We're a little disappointed, but, what can you do? His tumor or blood markers weren't the right kind so there is no choice but to continue moving forward with conventional chemo and radiation. Maybe we can "sour grapes" the situation by saying it probably wouldn't have helped anyway. Plus, with this experiment, only 2/3 of the subjects receive the live vaccine, 1/3 receive placebo, so he may not have received it at all even if he had the right blood.
Chemotherapy Schedule
So, the chemotherapy schedule will be concurrent with the radiation schedule. He will take a Temodar pill once a day, everyday, for 6 weeks. He will follow up with Dr. Hu every 2-3 weeks during this time frame. At the end of those 42 days, he will have one month off. They will do a follow up MRI during that month. Afterwards, there will be a maintenance chemotherapy schedule of 5 pills a month on and off for a year with MRIs interspersed every other month. I'm sure everything is subject to change depending upon actual findings. Stay tuned :)
On a brighter note, the new family room couch, love seat and reclining chair ordered months ago arrived yesterday. Terry likes them. The couch reclines and has a built in cup holder. I'm looking forward to seeing them.
Also, Steve went to a new family physician since they are no longer Kaiser members, a Dr. Thomas (did I get that right?) Cox, who has been Lesley's doctor for many years. Steve has lost 35 pounds since this started. Yikes! What a way to lose weight. Dr. Cox requested Steve's hospital records so he can make proper adjustment to Steve's diabetes medications. They will hear back from him in about a week with any changes to his medications. Steve went back on the treadmill as soon as the surgeon gave him permission after surgery. Steve continues eating a healthy diet with very few sweets.
(By the way, Terry says she has lost 19 pounds since Steve's diagnosis. The Stress Diet really works, but I can't recommend it.)
Last night, according to Terry, Steve awoke about 2 am with cold shivers, lasting about 10 minutes. He was confused for just a minute, probably from a dream (something about a sandwich). It's probably nothing, maybe the steroid taper, maybe Steve's fighting a cold that was going around, maybe some medication. He's been taking Tylenol PM to help sleep through the night. Sometimes we worry too much. Needless to say, Terry watches those little things and we talk about them. Steve's had no trouble today. But, if it happens again Terry will be on the phone to the doctor. Worry warts!
Next week, Steve plans to drive out to work to have lunch with his friends. I bet it feels good to plan a normal activity.
Steve's fiftieth birthday is coming up soon, the first week in February. Maybe he'll be well enough for a good party, if it doesn't last too long. What to you think?
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