diffuse astrocytoma stage 2 IDH wild type

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RE: diffuse astrocytoma stage 2 IDH wild type

by Buster00 on Thu Apr 25, 2019 02:56 PM

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thanks xx will keep you all updated after tez finish and next scan on 7may 2019 ,chin up all we will beat this shit xx

RE: diffuse astrocytoma stage 2 IDH wild type

by KB-Austin on Fri Jun 07, 2019 01:59 PM

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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.   

RE: diffuse astrocytoma stage 2 IDH wild type

by Buster00 on Fri Jun 07, 2019 02:55 PM

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hope so im trying it

RE: diffuse astrocytoma stage 2 IDH wild type

by hkprentice on Sun Jun 09, 2019 06:27 PM

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Hi everyone! I’m hoping you all are well and think of you and pray for you regularly. KB, I’m sorry to learn Mikes Tumor progressed and was positive for GBM. But it is very good to know he is doing well and they already have treatment options to present. I’m curious about the Optune prescription and how frequently he would do that? I met a lovely women in Cincinnati who has GBM and been using Optune for a long while. She feels it has worked well for her. Also curious about the THC oil+CBD oil and if you figured out how to acquire it. Buster I hope you are doing well on TMZ and not having bad side effects. Same question for you on THC/CBD. Keith I also hope you continue to manage your TMZ treatments fairly well. Do you ever have issues with white cell counts not bouncing back? Kevin is currently between treatments. He wrapped up the radiation (proton) + TMZ and was able to stay in ketosis throughout. Though he complained bitterly about the diet toward the end. He did lose weight but looks well still. His first scan afterwards showed stable disease. Throughout Kevin has continued to work but about 4 weeks post radiation the fatigue really set in and he wants to sleep a lot more. Also his white cell count continued to drop rather than bounce back after pausing TMZ so he is delayed in restarting at the double dose. Waiting on a new lab test result but Sat we plan to leave for a week cruise with extended family so not sure it’s a good time to pick back up the TMZ. At this point Kevin seems good physically with no other physical symptoms than fatigue but depression definitely has set in. His birthday was just a few weeks ago and I think he got very sad with worry. I asked he get an antidepressant so I hope that can help a lot. I think he was also very frustrated with his scan result and had hoped it could have shown some tumor shrinkage. I think he feels like since it didn’t show obvious reduction in size, he doesn’t feel like the treatment did anything. I try to encourage him that scans are hard to read and that certainly the radiation has killed off many cancer cells in the radiation field. Definitely trying to stay positive and enjoy each day but also feeling angry sad and frustrated for Kevin. All cancers are bad don’t get me wrong but brain cancer seems particularly challenging. Many thoughts and prayers to you all! Let’s all keep encouraging each other to stay positive and strong! xo

RE: diffuse astrocytoma stage 2 IDH wild type

by Buster00 on Mon Jun 10, 2019 07:56 AM

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hi , tmz not worked , doc now says months to live !!!! proper frightened now , hope everyone else in better place x

RE: diffuse astrocytoma stage 2 IDH wild type

by Keithge on Mon Jun 10, 2019 12:01 PM

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Hi all,

Buster & KB, so sorry to hear of the progression of the disease with you Buster and KB your husband Mike. Words fail me for what you must be going through.

Heather, I have completed 10 out 12 TMZ treatments. It is taking me longer to recover with each treatment however my white cell counts have so far always bounced back. I have scans every 3 months, like Kevin's tumor there has been no reduction however no growth either. I am also still working, just take a couple of days off at the end of each chemo cycle.

I had a mole removal from my ear a few weeks back that returned a positive for early stage melanoma so I am booked into hospital on Jun 20 to have a small part of my ear removed to make sure all of the melanoma is removed.

Thoughts are with you all.

RE: diffuse astrocytoma stage 2 IDH wild type

by Buster00 on Mon Jun 10, 2019 01:50 PM

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be positive all pls x

RE: diffuse astrocytoma stage 2 IDH wild type

by hkprentice on Mon Jun 10, 2019 07:37 PM

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Buster - I’m really sorry and will stay positive and keep praying for you. I can’t imagine how frightening it must be and am hoping your Dr can suggest another treatment very soon! Have you asked about Optune? Is it an option for you? Keith I’m also sorry to hear that they found pre melanoma and hoping they take care of that quickly without too many side effects for your ear or hearing. Goodness we could all use a hug right now! Sending you all love! And comfort! Don’t give up and stay positive. xo

RE: diffuse astrocytoma stage 2 IDH wild type

by Buster00 on Tue Jun 11, 2019 09:21 AM

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thanks for the reply optune not avail in uk they stick to standard protocol and watch u die !!!!!!!!!!!!!!!!!!!

RE: diffuse astrocytoma stage 2 IDH wild type

by hkprentice on Wed Dec 11, 2019 07:45 PM

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Where did the time go? Haven’t posted in so long but you all have been on my mind! Wondering how everyone is doing with treatments and if anything new being considered. Since last post Kevin has had progression confirmed on 2 scans. He is not working now. They repeated his biopsy and did biopsy of new focal lesion but pathology is unchanged so no clinical trial option. Started Avastin off label yesterday.
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