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KB-Austin's Message Board Messages

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Yes, they did genetic testing once on the biopsy and will do again on the tumor.  He did do temodor weekly during the first round of treatment in 2018 along with radiation.  Our NO says if the lomustine doesn't work we will try daily temodor with optune.  I'm so glad to hear from you!

Been awhile since I sent an update.  Mike's tumor started to grow in March/April.  We waited until after our 20 year wedding anniversary and a trip to the Turks and Caicos with 50 friends/family to do the surgery.  SUCH a wonderful time!  They did surgery 2 weeks ago (29 staples in his head) - and he is doing fantastic, but unfortunately the biopsy came back as GBM.  Not surprised.  We've been at this now for nearly 18 months.  Trying a chemo called CCUU (lomustine) next week.  If that doesn't work we'll try Avastin.  Also getting a prescription for Optune.  Baseline scan next week with a follow up 6-8 weeks from now.  Staying positive - and it takes some energy.  Heather, I tried to encourage Mike to do keto, but it's just not his thing.  Will try again!  I am also trying to figure out how to get my hands on THC oil because I hear that in combination with CBD oil it can be beneficial.   

I know this post is old, and don't know the status today.  But your message gives me some hope.  My husband is also IDH wildtype, unmethylated, age 59.  He was diagnosed 18 months ago.  We have done TMZ and radiation and 1 surgery, and are about to start with CCUU because the tumor is growing.  There still aren't many options for treatment, so they just - as you said - continue to try different things to see what works.  I am looking for THC oil to combine with the CCUU to help with side effects and also improve it's effectiveness.  Being both caregiver and wife is a blessing and a challenge.  My sister lost her husband (at age 56) to this terrible disease as well.  So we've been down this road together once before.  Blessings to you.

Buster, hang in there - hope that the temodor does it's thing.  You remain in my thoughts and prayers.

Heather, I heard about doing the keto diet - glad your doctor recommended he do that.  I tried for a week with Mike but it wasn't for him.  He's not a big carb eater, but wasn't willing to completely give up pasta or an occasional bowl of ice cream.  LOL.  I get it.

After 14 months on the cancer train, Mike had his first seizure since the initial diagnosis.  It was a focal seizure, not a grand mal like the first one - so inability to speak coherently and disorientation.  Spent 3 days in ER/Hospital but he is now stabilized.  The cause - which you should all be aware of - was likely his increased tolerance to his seizure meds.  Because he has been on the maximum dose of Keppra, we've now layered in a new seizure med and it seems to have done the trick.

His MRI showed some additional enhancement (minor) in the left frontal lobe, which could be from the seizure but since we've seen it before the doctor believes we should look at partial surgical removal and biopsy later this year if it continues to creep along and if the profusion test continues to show "hot".  I didn't realize that these tumors can be different stages in different areas - but they can.  The good news is, this particular area is probably partially accessible for surgery, the other areas (thalamus, etc) are not.
Mike's attitude is great.  The doctor did tell us that alcohol (per previous conversation) can increase your probability of having a seizure so we are cutting way back.  But like ice cream, he just isn't going to go cold turkey!   
Wishing you all love and joy in every day.  We certainly have learned to live in the moment and take each day as it comes. 
Thanks!

KB

I'm so sorry.  You have given us all much hope with the long time you've been before recurrance.  My brother-in-law was diagnosed with GBM and he survived over 5 years.  He did not respond to temozolomide when his cancer returned - but he did respond to Avastin (bevacizumab), and he had a second surgery for partial removal of the tumor growth.   

Sending love and prayers,

KB  

Buster, how are you doing?

Heather - TX has a 3 month rule on seizures.  Mike has only had one (small) seizure since his treatment and it was because he forgot to take Keppra one morning.  It was not like the first one (a grand mal) - he just had some pretty crazy speech issues, and could not form words ... one of the locations of his tumor is in the speech center of his brain.  So we are careful, but he still drives.  :-)

Hi HK - sorry to hear about your husband.  Mike and I still have wine with dinner, and he has the occasional beer.  Our doctor said to be careful with alcohol so we cut out hard liquor, which does impact him more than it used to.  The genetic testing may or may not be covered by your insurance.  Some day it will be used to direct personalized care, and to identify possible new treatments. Right now it will help give clues as to what treatments will/will not be effective. They are learning so much every day.   Our hope is that they figure something out while we are in the "watch and wait" phase of this thing.  The radiation was the hardest part of the treatment for Mike.  The effects kicked in about week 4 and lasted for about 6 weeks.  I doubt that he could have worked then because he was so tired.  The chemo was not as difficult.  He breezed through it, but we only did 5 weeks.  There is an online site for cancer care takers - but I only stayed on it a few weeks.  I've been talking to other women who have been through this (including my sister, a neighbor, and a friend's mother) for advice and support which has been helpful and hope to start blogging about it.   Wishing you love and hope and comfort as you start down this journey.  Right now, our days feel almost normal.   KB

I believe that the Suz222 was the one whose son did the clinical trials.  My husband (58) has a diffuse, multi focal, midline glioma, biopsed as stage 2 but with aggressive genetic markets.  Which makes it pretty messy for trials.  Appreciate your post - I've been reaching out to many women who are caring for loved ones with cancer just to hear their stories.  Everyone mentions music, reading, and spiritual connections as a way to keep sane.  Keep it up!

Mike's next scan is end of month 2.  He only finished 5 chemo cycles and then stopped since his blood counts were not good. At our neuro-oncologists recommendation I tried to get Mike into this trial which is along the lines of immunotherapy treatment:clinicaltrials.gov/ct2/show/NCT02924038

Long story short, we did not qualify for it.  But you might want to check it out.  I'm still looking around, and tried another one in Boston - but it is only for GBM patients.  It's difficult to find trials for Stage 2.  Our oncologist even investigated options for reclassifying it, but that would likely require another biopsy - with no guarantee of a different result.

Glad you are getting toward the end of the chemo.  Mike has been off chemo for about 3 months now and feels great.  We also have an MRI scheduled Jan 30th.

Buster - so sorry to here this.  We are still living each day MRI to MRI.  I'm curious if they change the diagnosis from stage 2 to something else when things "light up".  We have not been eligible for any clinical trials because most of those trials are for stage 4.  Hoping you respond to the chemo and that the side effects are managable.   Blessings.  KB

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About KB-Austin

Caregiver
Brain Cancer
Alternative Treatments, Cancer Diagnosis, Cancer Nutrition, Cancer Treatments, Chemotherapy, Clinical Trials and Research, Radiation, Side Effects

Married to the love of my life for 20 years. Positive attitude, love, laughter and family/friends keep happy and hopeful.

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