Well I finished the proton therapy last week.It was a lot easier to handle then IMRT back in 2010 I think because of The lack of chemotherapy While doing the radiation.
So as it stands today the only therapy I am doing is the Avastin. The plan is to Continue this Until either the MRI shows that there is more progression or I cannot tolerate the Avastin. So far the advanced and side effects have been minor. Some nose bleeding and problems breathing Very similar to What I've experienced in the past. I need to keep a close eye on my blood pressure It went up a little bit last time and it is one of the major risks of this drug.
One thing that I did not cover in any previous posts was That the radiation oncologist had Told me that the last progression that was seen that took out my vision was probably because of an effect He called " Avastin rebound " that causes tumors to GROW when stopping Avastin! He badgered me for making the decision stopping it. This was not the first jerkish treatment he gave me and I have since told his office I will not be seeing him anymore.
On top of it when I talk to the Neuro oncologist about this rebound effect, he said the growth could have been from this effect, but it was far from a matter of fact. Two doctors, same hospital, two totally different messages. Nice. Next of this is the fact that eventually I am going to have to stop the avastin. Disk leaves a very dark cloud on the horizon When that day comes. Hopefully the circumstances around the future decision to stop the Avastin are much more serious than the possibility of any possible rebound effect. yeah 'hopefully'. I've had 9 Infusions so far, and the plan is for one every three weeks.
MRI coming early March. This MRI will give us an indication if the proton therapy worked and if the Avastin is working. If we see progression here It indicates that neither worked and the decision to Stop Avastin Will be forthcoming leaving a lack of any treatment... watch and wait they call it.
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Ed, I admire your fighting spirit so much. Place your trust fully in Christ and only in Him. He will see you and your loved ones through this all the way. We all have a death sentence b/c of sin, but in Him we have eternal life! Remain faithful to Him through this awful trial. You will be victorious and you will boast of His goodness to us in eternity. Don't be confused by man's failing's. His true Church is the flock of His true followers. Simple as that - and He knows each one of them and has known them even before they were born. May He grant you the grace to live for Him, to be carried through this desert by Him. To declare His faithfulness even through this, for great will be your reward. From Job 13: 13
ReplyDelete“Let me have silence, and I will speak,
and let come on me what may.
14 Why should I take my flesh in my teeth
and put my life in my hand?
15 though he slay me, I will hope in him;
From John 11:
Jesus said to her, “I am the resurrection and the life.4 Whoever believes in me, though he die, yet shall he live, 26 and everyone who lives and believes in me shall never die. Do you believe this?” 27
That was the last blog my husband was able to make. His tumor took over his focus, his strength, and his world. And June 6th 2019 at 12:50 PM, surrounded by his family he left the world in peace and no more suffering. He left us with a legacy of courage, strength, dedication, determination, wisdom, knowledge and the list goes on. He was such a brilliant peaceful soul. Always willing to help and lend a honest hand. It’s is a lonely world without him. He was our everything. Rest In Peace my beloved husband and father to our amazing kids.
ReplyDeleteI am so sorry to hear of Ed's passing. I followed his blog for almost ten years, shortly after a friend of my own was diagnosed with a brain tumor and I was looking for some kind of answers and solace. Whenever I go to Matthiessen State Park I think of his blog entry about finding a cave there and I look for it. My thoughts are with you and your family.
DeleteHolly I found Ed's blog b/c my best friend was diagnosed with a brain tumor in 2018. He quickly lost his ability to walk and speak. I marveled at Ed's fighting spirit. I lost him in 2019 also. I am very sorry for your loss and hope that you are finding comfort in God, family, and friends. Blessings to you.
DeleteSo sorry to hear of Ed's passing. I have followed his blog from the start which coincided with my mothers brain tumour diagnosis. Praying for you all, Neil in Manchester England
ReplyDeleteYou have done a brilliant job making sure that people understand where you are coming from. And let me tell you, I get it. Please post more updates to cure.
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Hey Ed! Long time. How are you doing these days?
ReplyDelete