diffuse astrocytoma stage 2 IDH wild type

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RE: diffuse astrocytoma stage 2 IDH wild type

by Keithge on Thu Dec 19, 2019 10:13 AM

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Hi Heather,

Sorry to hear of progression with Kevin. How has progression impacted him? Fatigue, headache?

It is frustrating that those with Astrocytoma cannot access clinical trials. I hear good things about Avastin, giving us extra time and better quality of life.

I remain stable, next scan Jan 6th.

All the best.

RE: diffuse astrocytoma stage 2 IDH wild type

by ottoh on Mon Dec 30, 2019 03:43 PM

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Hi Buster. My wife had surgery for Gliobastoma twice in one year. After the second op we started giving her CBD and THC oils. This in combo with temador, seems to have worked for her. I'm a big believer in the oils and credit them for her success. I still give her half a dropper of CBD oil every morning and the same at night with one drop of THC. It's been 5 years now and she is doing great! If you can find some THC and CBD oils I think it is worth a try. The reasearch is looking very optomistic!  Good luck with this and God bless you. 

RE: diffuse astrocytoma stage 2 IDH wild type

by Betsy123 on Mon Jan 06, 2020 09:17 AM

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Hello,

My brother Oliver who is 27 years old has recently got diagnosed with Diffused Astrocytoma Grade 2. There isn't much online and so far its saying the survial rate is 5 years!! 

My brother is extremely upset and is becoming depressed, Since finding out about his illness, he has had 55% of the tumor removed. We have been advised to do chemo and radio but this is something Oliver really don't want to do. I'm just seeing if there is anyone out there that can give him some hope or advice. 

RE: diffuse astrocytoma stage 2 IDH wild type

by suz222 on Tue Jan 07, 2020 01:21 AM

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Hi Betsy and Hi Oliver:

I hope I'm able to offer you some real and dependable facts that you can be positive about.

First - a Grade II Diffuse Astrocytoma is not common. Usually the first presentation of brain cancer is severe and diagnosis is often a gliobastoma a.k.a. a GBM.  Those are ugly, evil tumours with poor prognosis.  You don't have that. Be thankful - very very thankful.  A Grade II Astrocytoma often progresses to GBM but catching it early is gives you the chance to be proactive.  It also progresses very very slowly in most cases and sometimes it doesn't progress at all.

Next - statistics for survival rate at 5 years are really misleading.  This is an average of the people involved in the study.  It's not a rule and a lot depends on the number of people in the study.  It's true that every tumour is different but death in 5 years takes into account the people who are hit by cars or a million different reasons and the people who are still healthy and active well beyond 5 years.  Is a mean average only.  Also, the statistics are changing continually.  A current study found that 100% of young people who had even a partial ressection were still alive after 5 years and 97% were alive after 10 years.

Bottom line?  Brain cancer sucks but you are not alone.  Find doctors and medical professionals that you trust.  Follow their advice.  Be proactive and be vigilant.  Take care of your health by eating well, exercising and perhaps a professional therapist to help you with coping strategies.  Nobody knows what tomorrow will bring but you should focus on beating the statistics.  No reason you won't.

At the beginning of my son's journey with brain cancer - 7 years ago - a doctor told us "there's so little we know about this and so much we don't know.  Things are changing all the time."  That is so true.  I've seen huge advances in the last 7 years.  Here's hoping for a cure.  It's possible.

Wishing you all the very best.  Please feel free to reach out to me for more info if you'd like.

Susannah 

RE: diffuse astrocytoma stage 2 IDH wild type

by hkprentice on Tue Jan 07, 2020 05:35 PM

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Happy New Year everyone! I agree with all of Susannah’s comments! xo Kevin has been doing great on Avastin. Today he’s having his 3rd treatment. Between that and all the steroid side effect clearing away I would say he’s doing as well as he was right before his 2nd biopsy in Nov. Even though he had confirmed progression on scan in Dec he has not had significant clinical decline. I have noticed a slight impairment dragging his left leg/foot just a tiny bit with his gait but balance still good. Hand tremors are improved and lessened (probably w d/c steroid). Fatigue is still marked with it difficult for him to get up before 1pm, but conversely he stays up til at least 10pm...he has not returned to work since the biopsy in November. I also agree with suggestions about considering CBD oil which is being investigated clinically and there does seem to be a lot of anecdotal evidence to support it. Kevin did add this to his supplement regimen. He’s been taking .5mL daily for about 3 weeks. We also added pancur c. This is a bit of a Hail Mary but As a clinical research professional I did due diligence in the scientific rational and potential risk profile and figure it’s with the risk. He started his 2nd cycle of that this week. Also trying to get him back in the gym and improve his diet. His next scan is 4 Feb. We hope to see that his progression has slowed or stopped for the moment. Best wishes to you all for a happy new year and good results with treatments!
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