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laurahope's Recent CancerCompass Activity

  • LauraHope has replied to a post on the message board

    Thank you Pat and all,  This message board has been so valuable for getting information and has connected me with friends on the same tough path.  As I am getting my life back together, I know  that I will participating in raising funds to increase awareness and finding a cure.  I will stay in hope - Laura in NY

    February 06, 2016 view post
    • LauraHope has replied to a post on the message board

      This is an important questin and there is no reason to feel guilty.  At first I thought there was no way that  I would be able to take care of husband at home.  However,  I am SO gld that I made the decision to have in-home Hospice care.  His death was as  peaceful as it could be... sad but not tragic. Below is the timeline that i posted here before.   Please feel free to send me a ...

      January 26, 2016 view post
      • LauraHope has replied to a post on the message board

        Thank you Dodger and all -  I agree that more information needs to out there on the reality of living and dying with GBM.  I know that by sharing we are helping each other. -  in hope, Laura

        January 23, 2016 view post
        • LauraHope has created a new message board discussion

          Dec 25, 2015 - RB is sleeping almost 20 hours a day.  He did wake up enough for us to have a fun Christmas morning and we loved being together. Dec 31, 2015 - The headaches are getting bad and even frequent Tylenol is not helping, so we are starting morphine.  He is not leaving the bed anymore and sleeps all the time. He is having trouble swallowing, so he eats ice cream. January 3, 2016 - RB was much mor...

          January 20, 2016 view discussion
          • LauraHope has replied to a post on the message board

            Rani - thank you so much for this.  I laughed 'popping zits'... I am sure it's a bit more difficult, but I love the image! Thanks for the humor.  It gives us more confidence and hope.  - Laura in NY  

            October 11, 2015 view post
            • LauraHope has replied to a post on the message board

              Thanks so much for this reply.  Makes us both feel better!

              October 09, 2015 view post
              • LauraHope has created a new message board discussion

                My husband will be having Cyber-knife radiation procedure next week.  Has anyone else had this?  What are the after effects?

                October 07, 2015 view discussion
                • LauraHope has replied to a post on the message board

                  For caregiver support, ABTA can connect you with others in similar situations - it's all volunteers - try http://www.abta.org/get-involved/national-volunteer-network/

                  September 30, 2015 view post
                  • LauraHope has replied to a post on the message board

                    Hello Kate,  Sorry to hear about your Dad.  The best information that I have found for when family is considering hospice decisions is on this website.  It was written by a daughter after her father's death from GBM.  It is frank and helpful.   http://www.brainhospice.com This is a most unwelcome journey for us all.  Wishing you and your family all the best - Laura in NY

                    September 30, 2015 view post
                    • LauraHope has replied to a post on the message board

                      I think we need to focus on the 4 years of additional life.  If it was quality time, then we are making some progress.  I am hopeful that long term survival will become more and more common.

                      August 14, 2015 view post
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                      About laurahope

                      Caregiver, Survivor
                      Brain Cancer
                      Cancer Nutrition, Cancer Treatments, Clinical Trials and Research, Conventional Treatments, Diet, Emotional Support, Spiritual Support

                      My athletic 60 year old husband was diagnosed with grade IV Glioblastoma Multiform on the right temporal lobe in the center of his brain in Nov of 2012. After surgery in Dec 2012, he has worked hard at exercise and PT and has regained use of his left leg, arm and almost all of his left hand dexterity. He has loss of left peripheral vision in both eyes. He underwent 7 weeks of Temodar and Radiation. After terrible headache in April an MRI showed the tumor progressing.
                      May 8,- He has started Avastin and will be starting a Celldex trail. Fatigue is his only side effect. I am so proud of his courage and determination as he continues to exercise and walk everyday.
                      June 11,2013 - my husband RB plays guitar again. We are thrilled beyond words!
                      July 30,2013 - MRI shows 50 percent decrease in tumor size. Fantastic!
                      Sept 29,2013 - MRI shows no tumor change and stability is good. Still a lot of fatigue and some mental processing problems. He is going to start working again, remotely from home, part-time 10 hours a week. We are so grateful!
                      Nov 15,2013 - MRI shows stable tumor and some area of shrinkage. NOs think this is due to Celldex. Very good news!
                      Jan 9,2014 - MRI shows more shrinkage. Quality of life continues to improve, less fatigue. He even cooked dinner for me last night! Feeling blessed and grateful!
                      March 6 - MRI shows everything stable. Good news to celebrate, almost 15 months from diagnosis.
                      May 1, 2014 - MRI is stable and even some signs of shrinkage. RB is now commuting into Manhattan by train and working 20 hours a week. He is thrilled with life. I am thankful beyond words!
                      June 26 - Again MRI shows no change and even slight decrease in FLAIR. Excellent news. Fatigue still continues, but IMHO he pushes himself too much.
                      July 15 - Due to fatigue, RB is now working from home. We are grateful that he has a boss who is flexible and compassionate. This schedule will give him more time for naps and help with healing.
                      Aug 21 - MRI is stable again. Cherish every day.
                      Sept 20 - We participated in the fundraiser for National Brain Tumor Society. A fun walk at the beach and our team - TEXAS TOUGH - even won the 'Most Spirited' award. It was wonderful to meet so many long term BT survivors!Sept 21, 2015 - MRI shows growth at the secondary tumor in the left cerebellum. RB is loosing some coordination and balance. He will need to stop working. For the first time the DRs have mentioned palliative care. But we still have an option, he may be able to have a cyber-knife surgery. We are hopeful and grateful that for now he still has great quality of life.Oct 16 - MRI shows stability again. Took a trip to see our daughter in MA. Aside from fatigue, no other side effects. So many fun days and beautiful fall weather!
                      Dec 9 - Unchanged MRI - fatigue only side effect. Life is good.
                      Feb 3, 2015 - DECREASE by 21%, MRI shows necrotic mass of 15mm now. Unheard of results. We know we are blessed and will use all of this time to help other GBM patients.
                      Feb 24 - Today, the FDA announced that Celldex has been granted "Breakthrough Therapy Designation" for the treatment of patients with EGFRvIII-positive glioblastoma (GBM). This approval was based on data from the Celldex clinical trial that my husband has been on since May of 2013. We are SO happy. Just think, by volunteering to be a lab rat, he might be helping many other people battle brain tumors!
                      APRIL 7 - MRI shows stability again. My husband is no longer using a cane and is taking a yoga twice a week. The DRs at Long Island Brain Tumor Center have saved his life!
                      June 2 - Latest MRI shows an slight indication of a new tumor in a differnt location. This means that my husband will be kicked off the Celldex trial. They are starting him on the DCVax-L, which is an therapy made from his own immune cells. This DCVax has been super-frozen for over 2 years now. Anyway, I guess that he is just a lab rat for a different experiment now. Hoping for the best.
                      July 30, 2015 - Latest MRI is a mixed bag. The good news is that the original tumor has shrunk again, likey due to the DC Vax. But the MRI shows some increase at the new secondary tumor in the cerebellum. Overall, we are forutnate, he is feeling OK and still working a few hours a week.
                      Sept 21, 2015 - MRI shows growth of the secondary tumor in the left cerebellum. RB is loosing some coordination, balance and vomited a few times. He will need to stop working. Also, there is some protein in his urine, which would indicate kidney malfunction. This is a common side effect of the Avastin. For the first time, the DRs have mentioned palliative care. But we still have an option, he may be able to have a cyber-knife radiation. We are hopeful and grateful that for now he still has great quality of life.
                      Oct 31, 2015 - Three consecutive cyber-knife radiation sessions were painless and the Winthrop hospital staff was excellent. RB has lost a lot of equilibrium and suffered with vomiting, especially in the car. He is now using a walker to get around the house. He has been sleeping a lot, up to 16 hours a day. We have started him on steroids, 8mg and thankfully the nausea is gone. His appetite is up and he is enjoying watching football. We are not going out much, but in the lovely fall weather are sometimes having picnic lunches at the park or beach.
                      Nov 10th - celebrated RB's 63rd birthday with family and friends at a great restaurant. He was in the wheelchair and unfortunately vomited in the car. However, he still enjoyed the food and the company.
                      Nov 24 - started Hospice care and I am glad. An aide comes 5 days a week for 4 hours. She is experienced and caring. She showers RB and keeps bed clean. the Hospice nurse comes once a week. He is now sleeping 18 or 20 hours a day. He has fallen twice with the walker, luckily our daughters are here to help. He is not in any pain, not unhappy, enjoys eating, music and being with us.
                      Dec 25, 2015 - RB is sleeping almost 20 hours a day. He did wake up enough for us to have a fun Christmas morning and we loved being together.
                      Dec 31, 2015 - The headaches are getting bad and even frequent Tylenol is not helping, so we are starting morphine. He is not leaving the bed anymore and sleeps all the time. He is having trouble swallowing, so he eats ice cream.
                      January 3, 2016 - RB was much more alert this evening and we sang many songs together with our two wonderful daughters.

                      January 4 - He stopped wanting to eat or take in any water. Started loud, raspy breathing in the evening. Luckily the nurse explained that it was just the muscles relaxing in his throat and he was not in pain.

                      On Friday, January 8th 2016 - RB left this world with strength, grace, and class. A true Texas Legend. The early morning sun arose, as his wife Laura and daughters sang and played guitar. With the last stroke of the guitar strings to the song "Lonesome Fugitive" he released his final breath. There are not enough words to express how much he will be missed.
                      We are deeply grateful for the loving support of all of our friends during RB's long roller coaster ride with brain cancer. He never had any doubts that a cure was near. Like many of you he was honored to be part of pioneering research. The American Brain Tumor Association has a page for memorial donations RB’s Page - http://bit.ly/1kYCC46

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