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Posts (10)

Oct 19, 2016 · Glioblastoma Resection in Brain Tumor

Lost my post…..darn.

Take care of yourself your caregivers.

#1 Get your depression managed. I am taking Effexor with Haldol and Ambien for sleep. These have been magic for me, because I was nearly suicidal. It was taking it’s toll on my family. Now, I am rested and no longer depressed. My family thanks me and attends counseling and church with me as well as sets up my medication weekly holder. We sit to set my schedule so they can hopefully attend. I also bought and drive a car, which gives me great independence.
#2 Find friends and/or faith to provide relief of worry, guilt or emotional turmoil.
#3 Remember always: there is NO right or wrong path. each of us GBM victims is unique. At a decision point, you will bring all your special needs and experiences that will impact your choice. Use all that information and experience to your benefit.
#4 GBM is terminal, so no choice can be worse. We need time and quality of life.
#5 Consider alternative medical interventions. I have found aromatherapy very comforting. My daughters choose the essential oils and we combine recipes. spa-like seems best so far. The crazy diets out the have no real proof of benefit. The paleo diet made me depressed and lose too much weight. Now I eat what makes me happy.
#6 Settle your final plans with you ur family. This means funeral and estate planning. Your family has this huge burden on their minds daily. Get is done for them.
#7 Smile 24/7. Try it for a days. It is contagious….look in the mirror and smile at yourself first.

We are all related in a very intimate way with the GBM. If anyone has advice or special needs, let us help each other help ourselves and our caregivers.

Love ya all.

Belinda, smiling and hopeful for grandchildren someday.

Oct 19, 2016 · Glioblastoma Resection in Brain Tumor

Colleen’s resources are amazing. Call them. Get informed.

Oct 19, 2016 · Glioblastoma Resection in Brain Tumor

One piece of advice: Always ask what is the least amount of treatment and/or surgery you need to qualify for any study. Be sure to ask along the way about things you may inadvertently do that would exclude you from further studies.
Until I looked into options and flew to Rochester to meet with my Mayo team, I was not aware that the Temodar wafers placed during my first resection disqualified me from the polio study. I spoke briefly with Dr. Friedman at Duke who informed me of this, so that door was closed from the start. I advised him that I still felt the wafers were an important step with the initial resection, and that I was disappointed the neurosurgeon in Tucson was unaware of this issue.
The last thing any of us GBM victims want is to close the door on options. So, I am an oncolytic measles patient, doing well. My last MRI, late August suggested tumor progression, so I am on Avastin every other week. I was assured that this would not exclude me from the MATCH trial Phase I coming out that matches genomic cataloguing with best results chemo for GBM. I am not apparently a candidate for the heatshock vaccine, but it is still too early to know where that stud is headed.

Take care. Remember, the bottom line is that GBM is NOT cured by surgery. Combinations or series of interventions are needed to try and control this disease. Personally, I have had four open surgeries and have done very well post-operative. I have, however decided that I WILL NOT undergo any further surgery to push my chances of significant morbidity. I have NO neuro defecits other than short term memory issues, and that may all be stress and post radiation therapy related anyway.

If any one would like to call me, let me know and we can set up a safe transfer of information.

Belinda Uhall MD

Oct 18, 2016 · Glioblastoma Resection in Brain Tumor

I am enrolled in and the final entrant at Mayo, Rochester, Oncologic Measles Virus in GBM, phase I clinical trial. I think I am #25 of 25.
I just reviewed the recent GBM national meeting report. There are studies in California, MD Anderson, SloneKettering and others. Sorry for spell errors.
And, there are Canadian studies and European.
From what I gather, the national GBM attack plan is to open as many studies of ALL phases to all GBM patients. We just need to figure out how to enter the system and identify a patient advocate to navigate the options. I personally would be interested in holding this position, but do not know where to start in the network and get started applying for the position.

Belinda (Dr. Uhall, MD)

Oct 17, 2016 · Glioblastoma Resection in Brain Tumor

I’m hoping this polio study at Duke site will be one of the final ones that any us will need.
To me, I think a fair amount of refining will be necessary for all these designer anti cancer immune therapies to actually benefit patients. I’m praying for more life time for me so this can be done for my benefit. I do not mind being a study mouse, because the risk of the research is no worse than the known outcome, death. These therapies are very complex despite the fact we can sit with colored pencils and draw like a cartoon what we THINK is happening. The genetic mapping of GBMs is amazingly complex. It is being done by tumor banks that actually grow the cells. They are sorted and catalogued for study with different chemotherapy drugs and immmune therapy. Ask your team to be sure your husband’s tumor has this completed. They then try to match the most effective chemo meds and, some day, match anticancer immune therapy to that specific tumor. The possibility of GBM cure lies on one or both of these study paths. I have not spoken with a tumor bank. They are in the US and Europe, as far as I have seen.
It might be worth travel to one of these sites for more information. The clinical study coordinator Sue Steimetz in Rochester or the GBM DOCTORS should know a lot more to advise you.
Certainly, comfort care and quality of life are primary. We have a terminal cancer. Spending time with family and cultivating his and your faith must be started now. The proverbial “bucket list” needs either begun or considered not necessary. Personally, spending time with my mother and 2 adult daughters are my only needs. I don’t have a bucket list. Church and faith are my greatest help in bearing this burden. In times of despair and distress, I reach for my pastor and my 78 year old mother. We are enduring. I am truly blessed to be happy and be fairly independent. I pray for all of those with thi devastating cancer.

Belinda

Oct 16, 2016 · Glioblastoma Resection in Brain Tumor

Hello,

My name is Belinda. I am 57 years old, a 30-year physician, who was diagnosed with a grade IV GBM last May 2015 after experiencing a grand mal seizure. I had the resection, radiation/boost and oral chemo. I have done well.
As a physician, I did have an edge-up, but put myself to task and contacted as many clinical study and GBM specialists as possible. Short term memory issues interfere somewhat, but I take lots of notes. A second or more opinions are a good idea. It is essential that you develop a team within a facility or town so that communication is smooth and timely. I became an Oncolytic Measles study patient at Mayo Clinic Rochester as of June 2016. This took me from my home in Tucson, but the satisfaction of team coordination has been an essential part of my survival. I had an oncology/Rad/Onc team in Tucson for breast cancer in 2014. I happened to personally know my team as colleagues for several years, but still find I need to prod them to work together at times. What a trip.
It is frustrating to see time pass to quickly, so you need to get going. If your team at Mayo feels unified and you both are feeling safe and informed, stay put and ask the team leader who they might recommend for another opinion. Duke and Cleveland Hospital have GBM specialists. A couple California medical schools also have GBM specialists. Online is reasonable to search, carefully. The GBM specialists around the world know of each other. There are GBM facilities in Europe as well. Each have their own studies, ideas and personalities. DO NOT BE AFRAID TO CALL THE DOCTORS, BECAUSE YOU KNOW MORE NOW THAN MOST PRIMARY CARE DOCTORS WILL EVER KNOW ABOUT GBM. YOU HAVE SPECIFIC QUESTIONS FOR THEM. I WOULD BE HAPPY TO ASSIST IF YOU NEED.
Currently, I am in Tucson, Az and follow up in the Scottsdale Mayo Clinic Cancer center. I recently added Avastin to my chemo, but I am 17 months survival, have a normal exam and a tolerable medication list. I actually inquired to Mayo as to a possible job as a patient and/or physician advocate to help with exactly your issues.

Belinda

Aug 5, 2016 · Groups offer support for brain tumor survivors in Brain Tumor

Well, I’m in Tucson. I am 7.5 weeks into the oncolytic measles study. I still feel great. Been off temodar since late April and only take one seizure med instead of 2. My 4 week post op followup was awesome. I flew to Rochester and really enjoyed seeing my team there. The Aspen Suites staff were also delightful (I spent nearly 6 weeks there in June). Energy and mood are nicely stabilizing. I also stopped the Optune, so finally am growing hair. Amazing how hair is a mood lifter and helps you feel more human.
The heat in Arizona is tough, but I grew up here, so I actually like it.
God is still my rock along with my family.
Days are busy and financial challenges never seem to stop coming through the door. My greatest challenge is trying to stay organized and focused. As a doctor and type A personality, I’ve always been able to focus and finish projects of any kind. Since donating part of my brain and radiating the rest, focus and finish are very difficult and frustrating. My 21 year old daughter seems always there to remind me how to do everything….gotta love kids.
I’m actually looking to see if I can find or create a job as a physician patient advocate. Maybe the Mayo Cancer Center would be interested.
My family thinks I need to travel for my bucket list. However, as some other cancer patients may appreciate, my joy is being in my home surrounded by familiar things and enjoying the skyscape of Tucson at night. I’d love to get to the Oregon coast this fall….we’ll see if the budget allows.
I will be seen at Phoenix/Scottsdale Mayo in 2 weeks. Hope it is not 110 degrees or hotter.

Prayers for us all….peace, satisfaction and never suffer.
Belinda

Jul 7, 2016 · Groups offer support for brain tumor survivors in Brain Tumor

It is wonderful to be home. I have 2 wonderful cats, a miniature horse colt named Toby and 2 daughters. I love being home and sleeping in my own bed. I also attend a Christian church with my brother and his wife. This has reconnected my with God and Jesus. I find my faith strength is directiy related to my level of happiness and autonomy. The bible provides me ways to enjoy my life and find purpose.

I am headed back to Rochester for MRI, labs and consult follow ups on July11 thru 13th. I am certainly interested in being an advocate for any cancer patient and/or family member.