diffuse astrocytoma stage 2 IDH wild type

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RE: diffuse astrocytoma stage 2 IDH wild type

by KB-Austin on Tue Jan 15, 2019 06:48 PM

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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.

RE: diffuse astrocytoma stage 2 IDH wild type

by suz222 on Tue Jan 15, 2019 06:53 PM

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My son was in a trial at UPMC.  Specifically Hillman Center in Pittsburgh.  To the best of my knowledge, the study lost its federal funding but I'm not sure they actually stopped taking patients because they had a big backlog of vaccine.  Anyway, it's targeted at stage II.  You can private reply me for more info about our experiences.  Short story, we LOVED the UPMC team.

RE: diffuse astrocytoma stage 2 IDH wild type

by BthaMythe on Fri Feb 01, 2019 06:11 PM

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Hi I am a 42-year-old diagnosed with astrocytoma grade 2 back into thousand and 12. After watching it for a year and a half it started to change, at that time I elected to have surgery, it was in my frontal lobe on the left side. April 1, 2014 I had my surgery and I was out of the hospital A day and a half later. I was back at work three weeks after surgery although things are different I’m not sure if it’s from the brain surgery or losing my dad. I lost him three weeks after my surgery the day after Easter. He did not make it through his heart surgery, well he made it three days but it was devastating to me, and like I said since it was the frontal lobe that they operated on, I had a lot of outbursts screaming and cussing when that was not my norm. I I’m always looking for different remedies I refused chemo or radiation and so far so good. The doctors had me on seven or eight different medicines and which I weaned myself down to only two. CBD oil is a good remedy and has proof of killing cancer cells, also increasing the atmosphere of acidic Levels in the body is supposed to make it impossible for cancer to survive in that environment, all of these things are what I’ve been told and what I have researched. I use music a lot to express my thoughts and emotions I am a believer in God and would be considered by many to be a Christian. But really what is a Christian. Bottom line is we only know what we’re taught. And we’re only taught as much as the teacher allows us to know. I believe having outlets and trying to keep positive thought process is the key as well as having a purpose and believing in the ultimate healer which is God and Jesus. A lot of my songs may be taboo to the church. But they are my real feelings And the knowledge that I have gained post surgery it is amazing, like surgery opened up a Puerto of understanding that I didn’t previously know that I had. The biggest issue that I had with all of this is the understanding of those around me and the emotions that was brought on by my loved ones and friends that I lost due to the misunderstanding of Mae Personality change as ever so slight as it may have been. If you are interested in listening to some of the things that I wrote about, I have a ReverbNation page, but I wish I knew about this site earlier, because I went into a dark place for a while secluding myself from everyone and losing out on life and everything that it Offers. You have to live every day to the fullest and be friendly to all, be quick to forgive, and to be brave in the face of the trials in our path. Stay positive and keep on seeking Reach out to those of us who understand rather than someone who does not. God bless brother

RE: diffuse astrocytoma stage 2 IDH wild type

by BthaMythe on Fri Feb 01, 2019 06:13 PM

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I am from near the Pittsburgh area, I am interested to hear more about the knowledge you have obtained. I have a grade two astrocytoma as well

RE: diffuse astrocytoma stage 2 IDH wild type

by KB-Austin on Fri Feb 01, 2019 07:27 PM

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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!

RE: diffuse astrocytoma stage 2 IDH wild type

by Dwhit9922 on Fri Feb 01, 2019 07:36 PM

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My husband has Diffuse Astrocytoma stage 2. They found his at the age of 25 and did the watch and wait. Removed it at 31 and it's grown back within the 2 1/2 time frame. They want to remove it again followed by chemo and radiation. I've been trying to find other options and found Poly-MVA. Has anyone heard of this or used it before? Sounds like it might be worth a try. 

RE: diffuse astrocytoma stage 2 IDH wild type

by Dwhit9922 on Fri Feb 01, 2019 07:42 PM

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Look into Poly-MVA. I'm new to all of this and my husband has diffuse astrocytoma stage 2 at 34. Had it removed in May 2016 and it's grown back. I've just been told about the Poly-MVA and he's going to try it. 

RE: diffuse astrocytoma stage 2 IDH wild type

by Dwhit9922 on Fri Feb 01, 2019 07:50 PM

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My husband had the same situation. He had his tumor removed May 2016 with the awake craniotomy. No chemo or radiation, however there is a tumor growing back. His doctor wants to remove it again and this time follow-up with chemo and radiation. He is only 34. How old is your son? I've recently found information on Poly-MVA and I'm researching it. I thought its worth a try before going through this again. My mom had cancer and fought it for 15 years, I know what the chemo & radiation does to the good cells and everything else. I'm hoping we won't have to go that route. I pray your son is doing well. This is all new to us as we only thought he had a mass and it just needed to be removed back in 2016. So I'm learning as I go. 

RE: diffuse astrocytoma stage 2 IDH wild type

by Buster00 on Sat Feb 02, 2019 11:42 AM

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hi keep me upto date pls ie poly mva x im in uk where are you ?

RE: diffuse astrocytoma stage 2 IDH wild type

by hkprentice on Sun Feb 10, 2019 07:40 PM

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Hi Keith and all,

My 52 yr old husband KP has confirmed Dx this month with inoperable diffuse stage II wild type astroctyoma involving the right anterior and medial temporal lobe, inculding medulla, hippocampus and temporal operculum.  We live in Indiana.  His history was he had vauge sypmtoms for 6+ months that were being evaluated by GP as panic attack.  For a couple months they went away altogether.  When this sypmtom returned in Dec it included L arm/hand tingling so I took him to ER where he presented with a generalized seizure - CT/MRI performed showing tumor.  Right now he's well controlled on Keppra and asymptomatic-no headach, no nausua, no altered motor function.  Next week we are going to Ohio to consult about proton delivered radiation vs. traditional x-ray delivered.  If he agrees to that he will do 6+ weeks proton radiaton plus TMZ, 4 weeks off, 6-12 cycles TMZ.

Week after next he consults with Precision Genomics for additional testing.  When you all mention "Triple Negative" status, what markers are you talking about there?

My husband was off work up til this past week and is going to try and work when he's able through treatment.  He is a data scientist for a pharmaceutical company so not sure if he will struggle with critical thinking and severe fatigue during or after radiation. 

One thing I'm curious about is diet and drinking .... we are interested to know if anyone here doing keto diet and if anyone continues to drink alcohol?  My husband has been told to stop drinking altogether and this has been a real struggle for him considering he's feeling well physically and quite frankly finds having a beer relaxing with the stress of diagnosis.  My guess is this will abate once treatment starts and it will be easier to not drink.

Also curious if anyone is attending support groups or how they manage the stress with family. We have 3 daughters aged 16-24 - doing well at the moment but I image things will get more stressful over time.  I'm struggling with the stress of work/family balance. I'm a manager at same Pharma company.

Sorry for so many questions this time!  I'm just very intereseted in learning as much from everyone as possible.  

My sincere wish is for health and happiness during everyone's journey!  


Kind Regards Heather

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