Clinical Trials, DOGE and the Dumbest Kennedy

Let me start off by saying I’m going to try to keep politics out of this post as much as I can. I am not a Trump fan or an RFK fan to be clear.

If you turn on the news the last couple of weeks it has been an avalanche of Trump, Musk, airplane crashes/incidents, DOGE, ICE and other horrible things going on. What you might not be aware of, or at least the specifics of, is how funding being pulled affects you or your loved ones.

How it feels leaving the hospital.

The online cancer community does though and it doesn’t look good for many of us. All FDA approved drugs must go through a rigorous approval process that includes clinical trial(s). The funding that is being pulled directly impacts those trials and that research, trials and research that has proven to save lives. Thanks RFK Jr. What is the opposite of saving lives? I think you can figure that part out.

If you’re a long time reader here you know I have talked about my treatment plan. As a refresher, I’m currently on medicine regimen 3 out of 4. What’s the next/final step- Clinical Trials!!! So to people saying things are blown out of proportion or it’s not that big of a deal I say…

It has taken up residence in my mind- a mind where I already question if this current regimen will even work. It has dimmed the lights of hope a little more, not completely though. I pinky promise, save the positivity (especially if it’s toxic), I am not abandoning hope as long as I’m alive.

Current situation for me:

• Sleep- Where I couldn’t sleep before now I can more often than not. However the exhaustion or fatigue is still just as bad. I am tired everyday by noon and no amount of sleep or napping seems to help. Yay!

• Pain- I have started on the Fentanyl patches and they help….somewhat. I’m still using my pain pills just as much so I don’t know how well it’s going.

• Radiation- I am halfway through my 8 sessions as of today. I’m not really feeling much pain relief there but I’ll hold off on final judgement until I complete the other sessions.

• Medicine- I am on a break from Lenvima. The side effects were just too much. I will more than likely start up again this week however my dosage has dropped from 20mg to 14mg (which I was assured is normal). I also have more labs to be done tomorrow to see how the medicine is affecting me.

It’s important to note that this isn’t just me or my cancer- it’s for all cancers- so if you don’t care about me maybe you care about kids with cancer?

That’s all for now. Thank you for reading and supporting.

-Joe