This is another post from Linda. Jamey is out of town for training with his work. We met with Dr. Salacz today after this morning’s post-radiation MRI. We received an excellent report. The flair on the left side of the brain that we decided to radiate does not show on the new scan. We will continue to monitor it, but this is good news for now. Also the original tumor doesn’t show any signs of recurring at this time. This is a good indication that the treatments have been effective so far.
We leave Saturday morning for North Carolina. We will drive down to Wilmington and Wrightsville Beach for some R&R, then return to Raleigh Monday morning for afternoon and Tuesday consultations. We return home Tuesday evening.
Dr. Salacz leaves tomorrow for a conference on brain tumors being held in New Orleans. We will consult after our meetings to determine if we want to make any changes to the planned treatment going forward.
Tuesday, October 20, 2009
Thursday, October 15, 2009
We apologize for not posting to this blog for so long. Jamey's schedule has been extremely busy and he has been traveling much of the time so this posting is from Linda.
I took my last radiation treatment on Monday, October 5. I am now in a rest period for two weeks, with the exception of my next regular treatment of the intravenous chemo, Avastin, which will be tomorrow, Friday, Oct 16. After the rest period, the plan is for me to go on much stronger doses of the capsule chemo, Temodar, for 5 days followed by 23 days of rest. This cycle is to be repeated for 6 months. The Avastin treatments will continue every two weeks during this time and for an undetermined period afterward.
Also, I am scheduled for a post-radiation MRI on October 20 and will meet with my neuro-oncologist, Dr. Salacz, immediately afterwards.
Derek and I will be traveling to Duke University Brain Cancer Institute for an assessment on October 26-27. Dr. Salacz is on board with this visit. You may recall that he recently did a fellowship at Duke. We will consult with Dr. Salacz after the Duke visit (and he will consult with them) to determine if we want to change any of the planned treatment.
I must admit that it is nice to no longer pace my day around the 2:15 radiation treatment, although I did enjoy seeing so many of you who volunteered as drivers. We are in your debt.
We made another trip to Mountain Grove in late September to celebrate my Dad’s 90th birthday. Vernon and Ginny hosted a party and we all had a great time! To top it all, Ben drove down with Addison (her first visit to Mountain Grove). It is hard to believe that she is more than 8 months old already.
My lower back is much better! After three visits with the pain management specialist and two cortisone shots, I am no longer carrying a pillow and ice bag everywhere I go. I have also been able to take walks, and am able to go most of 2 miles already. I have learned my lesson and am increasing the distances very gradually.
I have been able to go off many of the meds (am off all the pain meds) and am feeling much more like myself. Derek celebrates with me!
Thank you for all the prayers.
I took my last radiation treatment on Monday, October 5. I am now in a rest period for two weeks, with the exception of my next regular treatment of the intravenous chemo, Avastin, which will be tomorrow, Friday, Oct 16. After the rest period, the plan is for me to go on much stronger doses of the capsule chemo, Temodar, for 5 days followed by 23 days of rest. This cycle is to be repeated for 6 months. The Avastin treatments will continue every two weeks during this time and for an undetermined period afterward.
Also, I am scheduled for a post-radiation MRI on October 20 and will meet with my neuro-oncologist, Dr. Salacz, immediately afterwards.
Derek and I will be traveling to Duke University Brain Cancer Institute for an assessment on October 26-27. Dr. Salacz is on board with this visit. You may recall that he recently did a fellowship at Duke. We will consult with Dr. Salacz after the Duke visit (and he will consult with them) to determine if we want to change any of the planned treatment.
I must admit that it is nice to no longer pace my day around the 2:15 radiation treatment, although I did enjoy seeing so many of you who volunteered as drivers. We are in your debt.
We made another trip to Mountain Grove in late September to celebrate my Dad’s 90th birthday. Vernon and Ginny hosted a party and we all had a great time! To top it all, Ben drove down with Addison (her first visit to Mountain Grove). It is hard to believe that she is more than 8 months old already.
My lower back is much better! After three visits with the pain management specialist and two cortisone shots, I am no longer carrying a pillow and ice bag everywhere I go. I have also been able to take walks, and am able to go most of 2 miles already. I have learned my lesson and am increasing the distances very gradually.
I have been able to go off many of the meds (am off all the pain meds) and am feeling much more like myself. Derek celebrates with me!
Thank you for all the prayers.
Monday, August 31, 2009
Long Overdue Update!
Hi Everyone,
A combination of an extraordinarily busy schedule for me and quite a few significant changes in the treatment plan and progress has created the delay in updating this blog. I will catch everyone up here.
Mom began her treatment last Monday. Her initial treatment involves chemotherapy and radiation for the next six weeks. Her radiation is at 2:15 pm each weekday at St. Luke's Hospital on the Plaza. She takes an anti-nausea medication at 12:15 pm, followed by the chemotherapy Temodar capsule at 1:15 pm. She has reacted very well to the treatment and has had very few side effects. Sunday's Kansas City Star featured a story about brain cancer and treatment. There is a picture of a patient receiving the same or similar radiation treatment from the same office.
The doctors have reduced her steroid dose significantly. It has gone from 16 mg/day to 8 to 4 and now 2. This should help her relax and give her relief from the side effects of such a large steroid dose in a small body. Since she has always been a very high energy person running at a high rpm, the effect of the steroids could be compared to turbocharging a Ferrari!
Mom's main issue right now is some fairly serious back pain. We think this is the result of her return to exercise via elliptical machine. Fortunately, this pain is intermittent. Unfortunately, when it hits, it is pretty severe. She has stretches and pain meds to control this, and believes she's getting past this.
As always, keep the prayers and well-wishes coming. Mom's email is derek.linda@sbcglobal.net if you'd like to send her a message. She enjoys reading and responding.
A combination of an extraordinarily busy schedule for me and quite a few significant changes in the treatment plan and progress has created the delay in updating this blog. I will catch everyone up here.
Mom began her treatment last Monday. Her initial treatment involves chemotherapy and radiation for the next six weeks. Her radiation is at 2:15 pm each weekday at St. Luke's Hospital on the Plaza. She takes an anti-nausea medication at 12:15 pm, followed by the chemotherapy Temodar capsule at 1:15 pm. She has reacted very well to the treatment and has had very few side effects. Sunday's Kansas City Star featured a story about brain cancer and treatment. There is a picture of a patient receiving the same or similar radiation treatment from the same office.
The doctors have reduced her steroid dose significantly. It has gone from 16 mg/day to 8 to 4 and now 2. This should help her relax and give her relief from the side effects of such a large steroid dose in a small body. Since she has always been a very high energy person running at a high rpm, the effect of the steroids could be compared to turbocharging a Ferrari!
Mom's main issue right now is some fairly serious back pain. We think this is the result of her return to exercise via elliptical machine. Fortunately, this pain is intermittent. Unfortunately, when it hits, it is pretty severe. She has stretches and pain meds to control this, and believes she's getting past this.
As always, keep the prayers and well-wishes coming. Mom's email is derek.linda@sbcglobal.net if you'd like to send her a message. She enjoys reading and responding.
Saturday, August 15, 2009
Road Trip!
Hi Everyone,
Mom and Dad have skipped town! They are in Mt. Grove for the weekend to see family. I am sure everyone down there is as excited to see Mom as she has been to see them.
On the medical and treatment plan front, this has been a very busy and eventful week. Since they blasted out of town, I have not gotten every detail, but I will provide the general status here.
Mom was fitted with the mask for her radiation treatment this week. In Linda Holland's unique fashion, she treated the fitting, which involved nearly-molten hot plastic molding to her face, as a spa treatment! She also met with Dr. Pendergrass, her local oncologist, to learn more about his opinion on the Avastin chemo treatment recommended by Duke. He has been generally against Avastin because of potential side-effects and limitations of the drug, but since the specialists at Duke have recommended this treatment, it warrents a close look. Dr. Pendergrass's nurse practitioner recommended contacting another neuro-oncologist here in Kansas City for more information on Avastin. As it turns out, a friend of our family has been under the care of this doctor, and also recommended that we contact him. Dad called his office at St. Luke's here in Kansas City, and was able to schedule an appointment for the next day (Friday). We also learned that this doctor has recently been involved in a clinical trial involving Avastin alongside traditional treatments for Glioblastoma. He is also very connected with the Brain Tumor Center at Duke University. After their meeting on Friday, Mom now has a new primary neuro-oncologist!
This whole series of developments might seem to be a coincidence, but after the tremendous amount of prayer for wisdom and guidance, I find it a little hard to believe this was a chance meeting. Mom has said all along that the proper path would present itself if we all did our homework and listened carefully for answers to our prayers. I think she may have her answer here!
There are several medical details that I don't have just yet, but Mom and Dad were very impressed with his knowledge and experience, and I heard a couple of details he wants to explore that match the research I've done. I really believe Mom is in the right group of hands here.
I will update with more details of her treatment schedule and plan when I learn more.
Mom and Dad have skipped town! They are in Mt. Grove for the weekend to see family. I am sure everyone down there is as excited to see Mom as she has been to see them.
On the medical and treatment plan front, this has been a very busy and eventful week. Since they blasted out of town, I have not gotten every detail, but I will provide the general status here.
Mom was fitted with the mask for her radiation treatment this week. In Linda Holland's unique fashion, she treated the fitting, which involved nearly-molten hot plastic molding to her face, as a spa treatment! She also met with Dr. Pendergrass, her local oncologist, to learn more about his opinion on the Avastin chemo treatment recommended by Duke. He has been generally against Avastin because of potential side-effects and limitations of the drug, but since the specialists at Duke have recommended this treatment, it warrents a close look. Dr. Pendergrass's nurse practitioner recommended contacting another neuro-oncologist here in Kansas City for more information on Avastin. As it turns out, a friend of our family has been under the care of this doctor, and also recommended that we contact him. Dad called his office at St. Luke's here in Kansas City, and was able to schedule an appointment for the next day (Friday). We also learned that this doctor has recently been involved in a clinical trial involving Avastin alongside traditional treatments for Glioblastoma. He is also very connected with the Brain Tumor Center at Duke University. After their meeting on Friday, Mom now has a new primary neuro-oncologist!
This whole series of developments might seem to be a coincidence, but after the tremendous amount of prayer for wisdom and guidance, I find it a little hard to believe this was a chance meeting. Mom has said all along that the proper path would present itself if we all did our homework and listened carefully for answers to our prayers. I think she may have her answer here!
There are several medical details that I don't have just yet, but Mom and Dad were very impressed with his knowledge and experience, and I heard a couple of details he wants to explore that match the research I've done. I really believe Mom is in the right group of hands here.
I will update with more details of her treatment schedule and plan when I learn more.
Monday, August 10, 2009
Good Weekend
Hi All,
Mom had a great weekend. She is feeling better and more relaxed. The doctors have reduced her steroid dosage from 16 mg per day to 12 mg/day, and we anticipate that it will be further reduced to 8 mg this week. The steroids have caused her some restlessness and agitation, so she looks forward to seeing these side effects subside.
Mom enjoyed her annual tradition of back-to-school shopping for her granddaughters (my girls) Jessica and Audrey. Sherry Bonner's power-shopping skills and companionship made this Girls' Day Out a special one.
This week will provide a clearer picture of the treatment options and plan. Sloan-Kettering will receive pathology slides from the surgery on Monday, August 10. They have a board of surgeons and other physicians that meets every Monday to review various cases, so we hope they can review Mom's case today. Mom and Dad are meeting with the local oncologist to discuss the advantages versus risks of the additional chemo med suggested by Duke. Mom also has an appointment for radiation preparation. She will be fitted with a mask-like device that will protect her and limit her movement during the radiation treatments.
Sometime in the next two weeks, Mom will begin her treatment. This treatment will be a combination of chemotherapy and radiation. While the decision about the additional IV chemo drug, Avastin, is still under review, we are nearly certain that her treatment will involve a chemo/radiation regimen. She will undergo treatment 5 days a week for 6 consecutive weeks. Each night before treatment, she will take an anti-nausea medication followed by the tablet chemo medication. Her radiation therapy will take place the following day. It is our understanding that most patients handle this treatment without the drastic side-effects often associated with chemotherapy and radiation. She is likely to feel somewhat fatigued, and may experience some nausea. She has always had energy to spare, and she will put it to good use in the weeks to come.
Mom's case is being reviewed by the top experts in the field. The surgeon with whom Dad is speaking at Duke performed Ted Kennedy's surgery last year. The local radiation oncologist treated Royals manager Dick Howser. Mom and Dad live on Howser Lane, named for him.
Tuesday, August 4, 2009
Productive and Informative Day
Mom and Dad met with Dr. Pendergrass, her local oncologist, to hear his recommendations for her treatment plan. Dr. Pendergrass believes that the standard treatment protocol of radiation and chemotherapy is the best course of action in this case. The post-op MRI reaffirmed that Dr. Blatt, the neurosurgeon who performed the surgery, was able to remove all of the tumor. Besides the standard protocol, there are sometimes clinical trials that can offer innovative, but experimental, medications and treatment techniques. Because in Mom's case the tumor was completely removed and there has been no recurrence, there are no appropriate clinical trials.
This afternoon, the Brain Tumor Center at Duke University was in contact. While they concur with the recommendation for the standard radiation and chemotherapy treatment plan, they also recommended that an additional chemotherapy drug be used to augment this treatment. They believe this combination is showing promise at further inhibiting or delaying tumor growth. The Brain Tumor Center at Sloan-Kettering also made contact today. Both Duke and Sloan-Kettering are requesting pathology slides from the surgery, of which there is currently one copy. It looks like the waters can quickly become murky as we seek guidance from competing experts in the field. Dad is looking into the feasibility of having another set of slides made. If this is possible, slides will be sent to both Duke and Sloan-Kettering, and we will then listen carefully for the best recommendations.
The current plan is to begin the radiation and chemotherapy (both in tablet form and the IV medication recommended by Duke) in the next couple of weeks. This will involve 4-6 weeks of radiation treatment, 5 days a week.
The particular type of brain tumor and cancer Mom is fighting is known as Glioblastoma Multiforme. Current technology does not provide a cure, but new developments and progress are being made. It is very good news that the tumor was fully resected in the surgery, and we also believe that this case is in front of experts at the very leading edge of this field. I remind myself and everyone reading this that no one I can think of is better prepared, willing, and able to face this fight than Linda Holland. She is upbeat as usual, and ready to begin the next step in this journey.
Keep the prayers and thoughts coming! Mom and Dad's email is derek.linda@sbcglobal.net. Feel free to send a message there, but please be understanding if you don't always receive a reply. Mom enjoys catching up on emails in the morning, and she truly draws comfort and strength from the support.
This afternoon, the Brain Tumor Center at Duke University was in contact. While they concur with the recommendation for the standard radiation and chemotherapy treatment plan, they also recommended that an additional chemotherapy drug be used to augment this treatment. They believe this combination is showing promise at further inhibiting or delaying tumor growth. The Brain Tumor Center at Sloan-Kettering also made contact today. Both Duke and Sloan-Kettering are requesting pathology slides from the surgery, of which there is currently one copy. It looks like the waters can quickly become murky as we seek guidance from competing experts in the field. Dad is looking into the feasibility of having another set of slides made. If this is possible, slides will be sent to both Duke and Sloan-Kettering, and we will then listen carefully for the best recommendations.
The current plan is to begin the radiation and chemotherapy (both in tablet form and the IV medication recommended by Duke) in the next couple of weeks. This will involve 4-6 weeks of radiation treatment, 5 days a week.
The particular type of brain tumor and cancer Mom is fighting is known as Glioblastoma Multiforme. Current technology does not provide a cure, but new developments and progress are being made. It is very good news that the tumor was fully resected in the surgery, and we also believe that this case is in front of experts at the very leading edge of this field. I remind myself and everyone reading this that no one I can think of is better prepared, willing, and able to face this fight than Linda Holland. She is upbeat as usual, and ready to begin the next step in this journey.
Keep the prayers and thoughts coming! Mom and Dad's email is derek.linda@sbcglobal.net. Feel free to send a message there, but please be understanding if you don't always receive a reply. Mom enjoys catching up on emails in the morning, and she truly draws comfort and strength from the support.
Monday, August 3, 2009
Recovering Well, Appointment Tomorrow
"I'll take my breakfast by the Koi Pond." I'm wondering if Dad will regret beginning this new tradition! Mom's recovery is going very well. She is gaining strength each day, and through a conversation with her it's nearly impossible to imagine the surgery and challenges she's faced in the last several weeks. She is truly the Linda everyone knows: full of boundless energy, determination, and contagious positive energy. She has been taking evening walks, and is thrilled to feel the leg muscles get some exercise. We went to church Sunday and were amazed again at the wonderful support and comfort we find there.
The next step in this journey has begun, and tomorrow is an important day in this process. Mom and Dad meet with the oncologist to hear his recommendations for her treatment plan. We have also been in contact with two of the top centers in the nation for this particular cancer: The Preston Robert Tisch Brain Tumor Center at Duke University, and the Brain Tumor Center at Memorial Sloan-Kettering Cancer Center in New York City. Each facility is reviewing all diagnostic, surgical, and pathological information from Mom's case, and will be giving us recommendations and guidance. Once we hear from them, we believe the best choice will present itself to us. We are seeking God's wisdom and guidance to reveal the best course of action.
Please keep Mom in your prayers. It gives her tremendous strength and comfort to feel your support. Please also keep my Dad in your prayers. He is showing his considerable strength and wisdom through this difficult time, and is completely dedicated to Mom and her well-being.
I will post here tomorrow when we have news to share.
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