I thought I would do a quick update for everyone and also document my journey on this trial drug from now on. This is something I should have been doing since day one. Better Late Than Never...
Lately i have been fatigued and a bit depressed. I'm assuming this is part of the fatigue side effect of the trial drug. So far this medicine has improved my overall quality of life and is keeping the tumor growth at bay. The gamble i made a year ago paid off.
The only thing I am worried about so far is the vision issues. I did not have the best vision before I started this drug, but it's a bit worse after starting it. The docs are saying it's muscle fatigue of the eye which is causing my astigmatism to be worse. I do notice vision issues are worse when I am tired and driving at night as well.
Traveling every 3 months since January of last year has been draining, but in the long run it is helping me, and hopefully it will bring us closer to a medication that will control VHL. PT2977 has gotten a lot of press lately since the creators of the drug have won the Nobel prize. In my opinion, I think this will eventually be a maintenance drug for VHL.
See link below
nobel-prize-in-medicine-awarded-to-u-s-and-british-scientists
I am still struggling with anxiety, depression and low back pain. The pain has gotten a bit better from this experimental drug, but unfortunately I am still dealing with it. I have had a dozen surgeries on my spine and i have come to the realization I will never be 100 percent pain free. One top of this, I am always worrying about being kicked off long term disability. Insurance companies are the worst . I have already been through hell, have legit reasons for being on disability, and i am on this drug trial. Seems like enough lol oh well.
I am going to live my life and take advantage of feeling somewhat better.
It's really weird getting good news . Most of my life I have always feared when the next surgery would be. The latest results in December at the NIH were good. I am assuming every visit will be the same from now on and getting good news will be the new normal. Going forward after every visit I will post the results here and a do a update on how I am doing. March will be my next re-stage and i will keep you guys updated.
I have also been floating around the idea of staring a documentary to spread awareness of VHL, what it's like to be on a drug trial, and the importance of participating in clinical trials. I also want to start a video blog as well... Good things are coming for everyone. Keep hope alive.
Lately i have been fatigued and a bit depressed. I'm assuming this is part of the fatigue side effect of the trial drug. So far this medicine has improved my overall quality of life and is keeping the tumor growth at bay. The gamble i made a year ago paid off.
The only thing I am worried about so far is the vision issues. I did not have the best vision before I started this drug, but it's a bit worse after starting it. The docs are saying it's muscle fatigue of the eye which is causing my astigmatism to be worse. I do notice vision issues are worse when I am tired and driving at night as well.
Traveling every 3 months since January of last year has been draining, but in the long run it is helping me, and hopefully it will bring us closer to a medication that will control VHL. PT2977 has gotten a lot of press lately since the creators of the drug have won the Nobel prize. In my opinion, I think this will eventually be a maintenance drug for VHL.
See link below
nobel-prize-in-medicine-awarded-to-u-s-and-british-scientists
I am still struggling with anxiety, depression and low back pain. The pain has gotten a bit better from this experimental drug, but unfortunately I am still dealing with it. I have had a dozen surgeries on my spine and i have come to the realization I will never be 100 percent pain free. One top of this, I am always worrying about being kicked off long term disability. Insurance companies are the worst . I have already been through hell, have legit reasons for being on disability, and i am on this drug trial. Seems like enough lol oh well.
I am going to live my life and take advantage of feeling somewhat better.
It's really weird getting good news . Most of my life I have always feared when the next surgery would be. The latest results in December at the NIH were good. I am assuming every visit will be the same from now on and getting good news will be the new normal. Going forward after every visit I will post the results here and a do a update on how I am doing. March will be my next re-stage and i will keep you guys updated.
I have also been floating around the idea of staring a documentary to spread awareness of VHL, what it's like to be on a drug trial, and the importance of participating in clinical trials. I also want to start a video blog as well... Good things are coming for everyone. Keep hope alive.
A second chance at life with no surgery is a godsend.
“If you're reading this...
Congratulations, you're alive.
If that's not something to smile about,
then I don't know what is.”
Comments
Post a Comment