Jen's scan from earlier today was again stable! This marks 22 and 1/2 months since diagnosis.
I know it is easy to feel lulled into complacency with Jen's continual stable scans. The reality is she is doing extremely well considering that she is multi focal, inoperable, IDH1 negative (a type of mutation in glioblastoma with a much more positive outcome), and was unable to tolerate the standard dose of chemo used to treat her cancer. On the plus side though, Jen is methylated (a predictor for better outcomes with glioblastoma), she is under 50, has a positive attitude and she is a fighter surrounded by people who love her. She is also extremely disciplined with her diet regimen and is also willing to use the Optune (arrays on her head) which a lot of patients have difficulty adjusting to.
Jen's next scan is scheduled for August 25. At 7 weeks out this will be her longest period between MRIs. It will also be the day before her 2 year anniversary since diagnosis. Keep the prayers and well wishes flowing! Thank you!
Thursday, July 7, 2016
Tuesday, July 5, 2016
Update and a few pictures
First the good news - Jen has not had any further seizures since the last one in the end of May. We will be seeing a seizure specialist at UCLA in the next couple of weeks. If she continues to be seizure free we will resist any increases to her medication, but it will be good to have a plan if she has any further seizures in the near future. On Thursday of this week, Jen will be having her next MRI. I will post the results as soon as we are able. As always please keep Jen in your thoughts and prayers as we continue to hope for good results. We also have an appointment coming up in the next few weeks with Jen's dietician and nutritionist at UCLA to touch base regarding Jen's Ketogenic diet.
Jen and I have also found a great Brain Tumor Support Group for both patients & caregivers. This one meets in Santa Monica and unlike the earlier one I attended that I mentioned on this blog previously, this one has been a very positive experience. We have gotten to know some great people who are on a similar journey. The meetings give everyone a chance to talk about issues with others who have a definite understanding of the challenges that face someone with brain cancer. This group also has been great for discussions on treatment options and the sharing of info.
It has been a busy month. We saw Paul Simon at the Hollywood Bowl, went wine tasting with several friends, went to see fireworks on the 4th, and even managed to get in a beach day. We had a friend from out of town, Kristina and her son Luke, stay with us for a few days as well. It was great seeing them and spending time doing a few LA things together.
Many people have indicated that they were having trouble finding where to subscribe by email to this blog. I have revised the layout a little and made the subscribe by email a little more prominent. It is directly below Jen's picture on the right hand side. If you do subscribe you will be notified by email when there has been an update to the blog.
The medical device that Jen has been using for the last year and a half - Optune (the arrays she wears on her head) is not presently covered by Medicare. Almost all of the major insurance companies now cover this life saving device, but not Medicare. Come this January, Jen will be forced to go on Medicare and we do worry about what this means for her. There is a petition that you can fill out to encourage Medicare to cover this device. Please take a moment to fill it out. Although not a cure, it could help to extend someone's life. I have include the link below:
https://virtualtrials.com/activism.cfm
Jen and I have also found a great Brain Tumor Support Group for both patients & caregivers. This one meets in Santa Monica and unlike the earlier one I attended that I mentioned on this blog previously, this one has been a very positive experience. We have gotten to know some great people who are on a similar journey. The meetings give everyone a chance to talk about issues with others who have a definite understanding of the challenges that face someone with brain cancer. This group also has been great for discussions on treatment options and the sharing of info.
It has been a busy month. We saw Paul Simon at the Hollywood Bowl, went wine tasting with several friends, went to see fireworks on the 4th, and even managed to get in a beach day. We had a friend from out of town, Kristina and her son Luke, stay with us for a few days as well. It was great seeing them and spending time doing a few LA things together.
 |
| The last time Jen was at Vasquez she held her cane above her head. Now - No cane. |
 |
| Jen with Kristina and Luke |
Many people have indicated that they were having trouble finding where to subscribe by email to this blog. I have revised the layout a little and made the subscribe by email a little more prominent. It is directly below Jen's picture on the right hand side. If you do subscribe you will be notified by email when there has been an update to the blog.
The medical device that Jen has been using for the last year and a half - Optune (the arrays she wears on her head) is not presently covered by Medicare. Almost all of the major insurance companies now cover this life saving device, but not Medicare. Come this January, Jen will be forced to go on Medicare and we do worry about what this means for her. There is a petition that you can fill out to encourage Medicare to cover this device. Please take a moment to fill it out. Although not a cure, it could help to extend someone's life. I have include the link below:
https://virtualtrials.com/activism.cfm
Thursday, June 2, 2016
Another Stable Scan!!
This one is quite the sigh of relief. Jen's scan was stable! It has now been a little over 21 months since diagnosis. As far as the seizures, Jen has not had any further since Monday. Jen's neuro oncologist believes that with the stable scan her seizures speak more to her seizure medications than anything else. He said that perhaps her current medication regime is just enough to keep her from seizing, and any slight variation or stress might be enough to cause a seizure. Perhaps she has built up a slight tolerance to her present medication level. In any case we are hoping to not have to increase her medication as the seizure meds definitely increase fatigue and dull the thoughts a little. Obviously if she has another we will probably not have a choice.
We have made another appointment with the seizure specialty department at UCLA, but unfortunately they don't have any appointments for over 2 months. This is something we went through at the very beginning before we had a diagnosis. We tried to get appointments with specialists and were on 3 month waiting lists, even though Jen was having uncontrolled seizures several times a day. The only way we were able to accelerate anything was through going to the emergency room. Hopefully we won't need to do this again.
Thank you to everyone who sent well wishes. We are grateful for all the love and support and extremely thankful that Jen is doing as well as she is.
We have made another appointment with the seizure specialty department at UCLA, but unfortunately they don't have any appointments for over 2 months. This is something we went through at the very beginning before we had a diagnosis. We tried to get appointments with specialists and were on 3 month waiting lists, even though Jen was having uncontrolled seizures several times a day. The only way we were able to accelerate anything was through going to the emergency room. Hopefully we won't need to do this again.
Thank you to everyone who sent well wishes. We are grateful for all the love and support and extremely thankful that Jen is doing as well as she is.
Tuesday, May 31, 2016
Joshua Tree & an Update
Well 2 weeks ago, Jen and I went to the Joshua Tree Music Festival. This is something that Jen has been wanting to do for the past several years and we finally made it happen. Jen worked as a street team member and hung up flyers all around LA and earned a free 4 day pass. Our dear friends Paul and Mary volunteered setting up the festival and earned another free pass that they gifted to me. Paul & Mary stayed at the campground in their new 5th wheel and invited us to join them. Thank you guys so much for sharing your camper, giving us the free pass, and making us feel so welcome. Jen had a place where she could take her afternoon naps in the AC, and keep her batteries charged and her food for her diet cold.
The festival was so chill and the music was terrific. Jen and I had a wonderful time - truly a memorable experience.
In cancer news:
The Senate Committee on Appropriations approved a bill to expand department of defense research into Brain Cancer. This is a small drop in the bucket, but it all adds up.
http://hope.abta.org/site/MessageViewer?em_id=38460.0&dlv_id=63251
60 minutes recently announced that the polio trial for glioblastoma (previously mentioned here) was recently granted Breakthrough Status from the FDA. This will expand and fast track the phase 2 trial making it more likely that it will become available in the LA area. Although not a cure, and not everyone fared well, some patients have done remarkably well. Jen so far has been ineligible for this treatment, but it is definitely one that we are keeping a close watch on.
http://www.cbsnews.com/news/60-minutes-fda-breakthrough-status-duke-university-cancer-therapy/
As to Jen's progress, she has been continuing the Ketogenic diet as well as the Novocure (Electric field therapy). She recently attended her first pilates class as she continues to look for ways to challenge herself. Unfortunately, Jen has continued to have headaches off and on for the past month or so. Nothing too severe, and it could be nothing, but obviously it does give us a little cause for concern.
UPDATE:
I had previously done much of this thread and was getting ready to post. Jen wanted me to keep all the photos from Joshua Tree, even though we currently have had a little scare. Jen experienced her first seizure in almost a year on Friday. It was a small one, but did have some involuntary mouth twitching. Then yesterday she had a second seizure comparable to the first one. She did have 2 seizures last year (though months apart) and continued to remain stable. We hope for a similar outcome this time. Jen's next scan was scheduled for June 9th, but following the seizures we have talked to her doctor and are moving up the MRI. We will be getting the MRI tomorrow, but won't be able to meet with the doctor to get the results until Thursday. Needless to say we are a little concerned. We will update everyone as soon as we can. As always, please keep Jen in your thoughts and prayers. Thank you.
The festival was so chill and the music was terrific. Jen and I had a wonderful time - truly a memorable experience.
 |
| Festival Grounds |
 |
| Paul and Mary's camper |
 |
| The opening ceremony in the desert. |
 |
| Jen with one of the many art installations. |
 |
| Jen enjoying the music. |
 |
| Desert Fashion |
 |
| Jen relaxing at the campsite. |
 |
| There were great music shows pretty much non stop. |
 |
| Paul & Mary |
 |
In cancer news:
The Senate Committee on Appropriations approved a bill to expand department of defense research into Brain Cancer. This is a small drop in the bucket, but it all adds up.
http://hope.abta.org/site/MessageViewer?em_id=38460.0&dlv_id=63251
60 minutes recently announced that the polio trial for glioblastoma (previously mentioned here) was recently granted Breakthrough Status from the FDA. This will expand and fast track the phase 2 trial making it more likely that it will become available in the LA area. Although not a cure, and not everyone fared well, some patients have done remarkably well. Jen so far has been ineligible for this treatment, but it is definitely one that we are keeping a close watch on.
http://www.cbsnews.com/news/60-minutes-fda-breakthrough-status-duke-university-cancer-therapy/
As to Jen's progress, she has been continuing the Ketogenic diet as well as the Novocure (Electric field therapy). She recently attended her first pilates class as she continues to look for ways to challenge herself. Unfortunately, Jen has continued to have headaches off and on for the past month or so. Nothing too severe, and it could be nothing, but obviously it does give us a little cause for concern.
UPDATE:
I had previously done much of this thread and was getting ready to post. Jen wanted me to keep all the photos from Joshua Tree, even though we currently have had a little scare. Jen experienced her first seizure in almost a year on Friday. It was a small one, but did have some involuntary mouth twitching. Then yesterday she had a second seizure comparable to the first one. She did have 2 seizures last year (though months apart) and continued to remain stable. We hope for a similar outcome this time. Jen's next scan was scheduled for June 9th, but following the seizures we have talked to her doctor and are moving up the MRI. We will be getting the MRI tomorrow, but won't be able to meet with the doctor to get the results until Thursday. Needless to say we are a little concerned. We will update everyone as soon as we can. As always, please keep Jen in your thoughts and prayers. Thank you.
Thursday, May 5, 2016
Stable Scan!!!
Jen had another stable scan today! It has now been 20 months since diagnosis. We are especially relieved considering Jen's recent headaches. Thanks again for all the continued support.
Tuesday, May 3, 2016
Going Gray in May
May is Brain Cancer Awareness Month. Once again I have changed the look of the site to reflect this.
It has been a busy month. We had a Tiki party at the house for my 50th birthday party. Thanks to everyone who was able to come out. We survived taxes and just yesterday saw my parents off to the airport after their stay for a week. Below are a few pictures from the visit.
 |
| Randy & Jen with Randy's parents at Huntington Gardens. |
 |
| Randy with Parents in Rose Garden. |
 |
| Japanese Garden at Huntington. |
 |
| Sitting around the fire. |
 |
| Jen in front of Air Force One at Reagan Library. |
 |
| Jen if front of a piece of the Berlin Wall. |
We had a great visit with my parents. You may notice the picture of Jen in the wheelchair at Huntington Gardens. This is not due to any deterioration, merely something we do if we go someplace that involves a lot of walking/time on the feet. It definitely makes it easier for her to maintain enough energy and gives her something to hang her Novocure pack on. Even so, she usually ends up splitting the time between sitting in the wheelchair or just walking behind it.Jen has been doing well. She has started doing Physical Therapy again a few times a month. We have to be careful with how often she goes so we don't run out of what the insurance will cover if she ends up having a greater need for it later in the year. Jen continues to have memory issues, again probably from the radiation. She has had a few headaches in the last couple of weeks. It's probably nothing, but obviously we question everything as we know that headaches can be a sign of tumor growth. They could also just be headaches. Jen has been having some allergy issues from everything blooming and believes it could be related. In any case, Jen's next MRI has been moved up to this Thursday (not because of any concern, merely due to our doctor changing his clinic days). As always, please keep Jen in your thoughts and prayers as we hope for another good scan. We will keep you posted.
Wednesday, March 30, 2016
Another stable scan!!!
Jen had another stable scan today! This makes it 19 months since diagnosis and 18 months of stability. So happy right now!
Sunday, March 20, 2016
It's been a busy couple of weeks
This post will contain a lot of completely unrelated events. Jen and I have been extremely busy for the last several weeks and I am just now getting a chance to post about some of our activities.
First up, Jen and I hosted our annual Oscar Party a few weeks ago - something we have been doing for at least 20 years now.
The following weekend, Paul & Mary came to stay with us and the four of us along with Rich & Terry took in a concert. The Mavericks. If you don't know them you should definitely check them out.
Last weekend we attended our second UCLA Brain Tumor conference. It was again informative and also a great chance to connect and share stories with others going through a similar situation. The most promising areas of research are in the areas of immunotherapy and vaccine trials, although nothing yet has had the response rates that we have seen in recent years in other types of cancer. As I have mentioned before, brain cancer is one of the hardest to treat because of where it resides and the presence of the Blood Brain Barrier that normally protects us from toxins but also prevents drugs from reaching the tumors as well.
This year was the first time they had an entire presentation dedicated to the Ketogenic diet. Something Jen has been doing for over 17 months now. Jen was pointed out by the presenters and Jen and I helped to answer questions and Jen even brought out her lunch and snacks to show examples of Keto meals. The room was packed. There is definitely a lot of interest in this, just not a lot of human research as of yet. Trials have been hard as the compliance rate is not very high and there is no major pharmaceutical company funding any research.
Then, a few days later, Jen and I took in another concert. This time we saw Jake Bugg. He just turned 22 less than a month ago and already has 3 albums under his belt. Music is such a source of joy for Jen and myself.
Wow, it sure has been a busy few weeks. Living life and trying to make the most of each day. Fortunately, we don't have a lot planned for a few weeks (besides doing #%$@ taxes).
Jen's next scan is in a week and a half on March 30th. We continue to welcome all of your support, prayers, and well wishes as we again hope for a positive scan.
One final thing. For those of you who do a lot of online shopping, I am not sure if you are aware of Amazon Smile. This is the same storefront as Amazon, same prices, except a portion of most purchases can go towards a charity of your choice. We have selected Musella Foundation, which has been a valuable resource and they do a lot of research funding for brain cancer. http://www.virtualtrials.com/musella.cfm There are several other leading brain cancer organizations to choose from as well. You can of course also pick from hundreds of additional charity organizations that may be nearer to your heart. I would encourage anyone shopping there anyway to utilize this resource. Every little bit helps. You can google Amazon smile or go to:
https://smile.amazon.com/
First up, Jen and I hosted our annual Oscar Party a few weeks ago - something we have been doing for at least 20 years now.
 |
| Lisa won the Trivia prize |
 |
| Earl won the Boobie prize. Yes it is a pillowcase - Nick is watching you while you sleep. |
 |
| Ervin won 3rd place |
 |
| Kathy won 2nd |
 |
| Tom won 1st |
 |
| Every Mad Max movie ever. |
 |
| Srini & Jen do their best Blue Steel imitation. |
 |
| Thanks to everyone who came. |
The following weekend, Paul & Mary came to stay with us and the four of us along with Rich & Terry took in a concert. The Mavericks. If you don't know them you should definitely check them out.
 |
| With Paul, Mary, Rich, & Terry |
And now a few videos of Jen dancing. She danced most of the night!
Last weekend we attended our second UCLA Brain Tumor conference. It was again informative and also a great chance to connect and share stories with others going through a similar situation. The most promising areas of research are in the areas of immunotherapy and vaccine trials, although nothing yet has had the response rates that we have seen in recent years in other types of cancer. As I have mentioned before, brain cancer is one of the hardest to treat because of where it resides and the presence of the Blood Brain Barrier that normally protects us from toxins but also prevents drugs from reaching the tumors as well.
This year was the first time they had an entire presentation dedicated to the Ketogenic diet. Something Jen has been doing for over 17 months now. Jen was pointed out by the presenters and Jen and I helped to answer questions and Jen even brought out her lunch and snacks to show examples of Keto meals. The room was packed. There is definitely a lot of interest in this, just not a lot of human research as of yet. Trials have been hard as the compliance rate is not very high and there is no major pharmaceutical company funding any research.
Then, a few days later, Jen and I took in another concert. This time we saw Jake Bugg. He just turned 22 less than a month ago and already has 3 albums under his belt. Music is such a source of joy for Jen and myself.
 |
| Jen under the marquee |
 |
| Jen is also presently an active street team member for the Joshua Tree Music Festival |
 |
| Jen handing out flyers for the event |
And lastly, one of our friends Lisa, who works at Warner Brothers invited us to a sneak preview of Universal Studios Harry Potter Wizarding World. This is the newest addition to the theme park. It doesn't open to the general public until April, but we got a sneak peak. In addition, we got to spend the entire day at Universal and take in all the rides as Lisa's guests. We planned carefully and Jen did use a wheelchair to conserve her energy and give her something to hang her Novocure backpack on. Jen was definitely tired at the end of the day, but she really had a great time. Thank you, Lisa! |
| The new Wizarding World section of the park. |
 |
| Jen tries her best to keep the sun from heating up her arrays. They are very sensitive to the heat. |
 |
| Lisa, Jen, & Kathy |
 |
| The Backlot tour |
 |
| Bates motel and the Psycho House on the hill. |
 |
| Look, there are vacancies. |
 |
| Dr. Seus |
 |
| Flash Flood. |
 |
| Crashed plane from War of the Worlds. |
 |
| We had to cover up Jen, so her Novo arrays didn't get wet on the Jurassic Park water ride. |
 |
| Jen & Lisa |
Wow, it sure has been a busy few weeks. Living life and trying to make the most of each day. Fortunately, we don't have a lot planned for a few weeks (besides doing #%$@ taxes).
Jen's next scan is in a week and a half on March 30th. We continue to welcome all of your support, prayers, and well wishes as we again hope for a positive scan.
One final thing. For those of you who do a lot of online shopping, I am not sure if you are aware of Amazon Smile. This is the same storefront as Amazon, same prices, except a portion of most purchases can go towards a charity of your choice. We have selected Musella Foundation, which has been a valuable resource and they do a lot of research funding for brain cancer. http://www.virtualtrials.com/musella.cfm There are several other leading brain cancer organizations to choose from as well. You can of course also pick from hundreds of additional charity organizations that may be nearer to your heart. I would encourage anyone shopping there anyway to utilize this resource. Every little bit helps. You can google Amazon smile or go to:
https://smile.amazon.com/
Subscribe to:
Posts (Atom)