diffuse astrocytoma stage 2 IDH wild type

80 Posts | Page(s): Prev 12...5 6 7 8  Next 

RE: diffuse astrocytoma stage 2 IDH wild type

by Buster00 on Fri Mar 01, 2019 08:10 AM

Quote | Reply
Thanks x

RE: diffuse astrocytoma stage 2 IDH wild type

by hkprentice on Wed Mar 13, 2019 01:48 AM

Quote | Reply

Friends how are you all doing and holding up?  I hope everyone is hanging in there and doing the best they can to stay positive and still seeking options for better outcomes.

I have not posted in a long while since we were on the pre-treatment roller coaster for the past two weeks (lots more Dr. visits, getting logistics in place and remote housing in OH).  

I wanted to share some interesting alternative approaches our treatment team is suggesting for Kevin in addition to Standard of Care.  His Oncologist at University of Cincinnati is a research physician with a focus on Integrative Medicine.  She's prescribed him to be on a modified atkins diet (<=20 grams net carbs per day) starting 1 week before radiation and for 11 total weeks.  This takes him up to first Scan post proton radiation + TMZ.  The hypothesis is that ketosis makes the cancer cells more amenable to death from radiation. 

In addition she recommends he take Boswellia extract supplement 2 pills 2 times daily as an anti-inflammatory other than steroids. This supplement is also being investigaged as potentially having some anti-tumor effects. 

She said we should not be scared with the first Scan post radiation, that it will look "angry" and lit up.  She said that is expected due to inflammation and scarring from the radiation.  She had a very positive attitude and said even though he's "High Risk" LGG (inoperable, >50 yrs old, IDH wild type) that we are taking an aggressive approach and there is data supporting 10 years median survival outcomes.  

I hope this information can be helpful to anyone newly diagnosed. 

Yesterday was Day 1 of Kevin's proton radiation + TMZ.  Today he still has no side effects from either.  The 2 weeks leading up we were both very anxious and he seemed very depressed.  But now that we are past the first treatment jitters we have better spirits and are trying to stay positive that this will grant him many years to come.

Wishing all the best to all of you out there and hope you are also staying positive about your situation. There is Hope.  xo

RE: diffuse astrocytoma stage 2 IDH wild type

by Buster00 on Thu Mar 14, 2019 02:52 PM

Quote | Reply

hi all quick update on astrocytomer grade 2 nov 18 more bright areas seen so tremdor prescribed, feb 19 , some more new bright areas so carry on with chemo !!hope it works vthis time .best wishes to all us patients.

RE: diffuse astrocytoma stage 2 IDH wild type

by Keithge on Fri Mar 15, 2019 10:15 AM

Quote | Reply

Hi Heather,

I am holding up alright thankyou and pleased to hear yourself and Kevin are as well.

I have had 7 TMZ treatments, 5 remaining. A few days into the TMZ treatment and a few days after are not pleasant for me but as you will see on Cancer Compass everyone copes differently.

I have been taking curcumin to try and help with aches I get on the left side of my body from time to time - I will see if I can get some Boswellia to try.

Buster - wishing you all the best with your chemo.

Cheers

RE: diffuse astrocytoma stage 2 IDH wild type

by Buster00 on Fri Mar 15, 2019 11:54 AM

Quote | Reply

thanks keep in touch x

RE: diffuse astrocytoma stage 2 IDH wild type

by KB-Austin on Fri Mar 15, 2019 01:38 PM

Quote | Reply

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

RE: diffuse astrocytoma stage 2 IDH wild type

by Buster00 on Fri Mar 15, 2019 02:06 PM

Quote | Reply

hi being in the motortrade my nightly pleasure was pub , home for wine and a nip before bed ,not touched a drop for 7 years now and life means more than booze and physcotic attaks with keppra x

RE: diffuse astrocytoma stage 2 IDH wild type

by Buster00 on Fri Mar 15, 2019 02:07 PM

Quote | Reply

thanks for the prayers we all send them to each other daily x

RE: diffuse astrocytoma stage 2 IDH wild type

by hkprentice on Sun Mar 24, 2019 03:44 PM

Quote | Reply
You all have been on my mind lately and in my prayers! I am praying everyone is doing as well as possible and staying positive. There are a lot of tough moments but there are many good moments too and I hope we can all cherish those and find gratitude in something each day. I appreciate hearing what you are experiencing and what your doctors suggestions are for managing new symptoms. Every case is different but it helps us prepare and take into consideration other treatment options we should consider and other lifestyle changes that may be necessary. Kevin has completed 3 weeks of diet and 2 weeks radiation + TMZ. So far so good- no significant side effect. His skin is starting to show redness in the beam contact site. Looks like a sun burn. So we predict to see some of the cumulative treatment effects emerge over the next weeks. He’s cut way way back on alcohol since starting the diet. He’s in ketosis so a tolerable amount for that but right now he just is not willing to abstain completely. This week is our daughters Spring Break from school so they plan to visit us and do some sight seeing in the area. Prayers to you all!

RE: diffuse astrocytoma stage 2 IDH wild type

by Keithge on Thu Mar 28, 2019 09:42 AM

Quote | Reply

Hi Heather,  i am going alright thanks and pleased to hear yourself and Kevin are. Following your recent post I have switched from Curcumin tablets to a Curcumin / Boswella tablet to help with aches on my left side.

Hi KB - how are you and Mike going? What decision did you make about surgery?

Keith.

80 Posts | Page(s): Prev 12...5 6 7 8  Next 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.