Road bum Posted August 26, 2019 Share Posted August 26, 2019 Saw my Oncologist today and I’m a little down. The essence of our conversation was the fact that I am out of options. Basically I have had all the chemo that I can have. This is where it gets a little hazy. I’m not sure she said no more at all or maybe some later. I’m going to give her a call tomorrow and clear that up. She has apparently already called The University of Alabama Birmingham Hospital about the possibility of some clinical trials they might be doing. Right at the moment their are none that I would fit in. So she is going to do some more checking and I will also. She assures me that she is in this all the way with me which is comforting. I really trust her but at this point I am going to try to get a little more proactive for myself. I guess I should be a little scared at this point. Somehow I’m not. I figure all I can do is try to help my Doc by maybe finding some other options. My spirits are good, my faith is strong. Every day is a good day and they all bring something new. It may be very small but my time looking for them is, in my mind, well spent. If any of you folks can point me in the right direction to research some other avenues of treatment I would appreciate it. Ron Link to comment Share on other sites More sharing options...
Tom Galli Posted August 27, 2019 Share Posted August 27, 2019 Ron, Read this. Then, write an email to jan.pappas@nih.gov per the last paragraph of the blog. Note, if you choose National Institute of Health (NIH) as a treatment provider, you'll need to travel to Bethesda, MD for treatment, but travel and lodging cost is paid for by the NIH. Stay the course. Tom Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 27, 2019 Share Posted August 27, 2019 Hi Ron, I read your other post before this one-- Tom's suggestion is a great one. I has some others as well. Hang in there my friend! Michelle Link to comment Share on other sites More sharing options...
Road bum Posted August 27, 2019 Author Share Posted August 27, 2019 Al Thank you Tom. I will definitely write that email and find out what they might do. I’m not sure I want to go all the way to MD. But it can be done. I always said they would have to rope and drag me to the fire. I guess it’s time to find out what I’m made of. Ron. Link to comment Share on other sites More sharing options...
Road bum Posted August 27, 2019 Author Share Posted August 27, 2019 Michelle, I will always hang in there. Thank you. Ron Link to comment Share on other sites More sharing options...
Laurel Posted August 27, 2019 Share Posted August 27, 2019 Bless you in your search. Sending prayers and soft hugs. Good for you for reaching out for ideas. Link to comment Share on other sites More sharing options...
Susan Cornett Posted August 29, 2019 Share Posted August 29, 2019 Thinking about you. Please keep us posted. Link to comment Share on other sites More sharing options...
Road bum Posted August 29, 2019 Author Share Posted August 29, 2019 Feeling pretty good today. I actually got to sit on the back deck since the weather was so nice this morning. It was about 72 degrees with a nice breeze playing in the big trees. Very unusual for south Alabama in August, it reminded me of Wisconsin in late June. Perfect way to start your day. The only real problem I have right now is the neuropathy and I can handle it most of the time. When I can’t the pain meds can. Thank you all for your kind words of encouragement. They are much appreciated and much needed. Greatest bunch of folks I’ve ever known. Ron Link to comment Share on other sites More sharing options...
Tom Galli Posted August 29, 2019 Share Posted August 29, 2019 Ron, I really believe in this concept. Two simple words that are so very powerful and mean so much. Make them your watchwords as you move forward, and.... Stay the course. Tom Link to comment Share on other sites More sharing options...
Road bum Posted August 29, 2019 Author Share Posted August 29, 2019 This is my signature line on my emails. I do believe and I do have hope. As the last line says “ Anything can be. “ Ron "Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." —Shel Silverstein Link to comment Share on other sites More sharing options...
Road bum Posted August 29, 2019 Author Share Posted August 29, 2019 This what I do when I don’t have the shakes. This is a bone handled knife that I scrimshawed my feelings on when I was first diagnosed. I am hoping to lose the shakes so I can do the fine work again. If this is inappropriate them moderators please delete. It won’t hurt my feelings. Ron Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 3, 2019 Share Posted September 3, 2019 Well done! I admire your strength. Link to comment Share on other sites More sharing options...
LouT Posted September 3, 2019 Share Posted September 3, 2019 I wish you all the best on your journey Road Bum. There is so much research going on now that anything is possible. You’ll also be in my prayers. Lou Link to comment Share on other sites More sharing options...
Road bum Posted October 21, 2019 Author Share Posted October 21, 2019 Well I had the scan, I’ve seen the Doc and somehow I think I know less than I did before. Hopefully someone can explain to me what exactly is meant by “ the tumor is basically the same size but it’s plumper” means. So anyway, I guess their hasn’t been much change so that’s a good thing ( I’ll get to that plumper thing later ). Doc says she is going to talk to my radiation doc about the possibility of using SBRT.She isn’t sure if I can do that since I had a “ton” of targeted radiation on my first go round 2 years ago. This tumor being in the same spot might be a problem I guess the next witches brew that I am going to get is Gemzar. Not familiar with it at all so I’m hoping some of you can enlighten me a little. i need to find a little of my “bounce back”. Seems like it all went away. Now, on to that plumper thing that my Doc was talking about. I get a kick out of what she calls things when she is trying to explain something. Basically the Radiologist said the tumor was the same size as the scan done in July. However, it is mildly bulkier in areas. It went from 1.7 x 1.8 cm to 2.5 x 2.0 cm. Since July. Thus, it is plumper according to my Doc. So I need all you guys to get your diplomas out and get me back on the road with some decent directions. I hate sitting on the side not knowing where I am.😳😳😉😂 Ron Link to comment Share on other sites More sharing options...
Rower Michelle Posted October 22, 2019 Share Posted October 22, 2019 Hi Ron- I’m hoping radiation with Gezmar knocks it out. Living with uncertainty is the worst part of this process. I’ve read along the way radiologists have guidelines to measure tumor sizes, with your results it does seem to fall into the “mild” growth category. I think Lynn Eldridge MD wrote a post about this last year. I’m glad there’s more tricks of the docs sleeve. We’re all pulling for you until that fighting spirit returns. It’s exhausting to be on a 24/7 war footing- that’s where the family comes in with lots of prayers. We are your warriors now. A big hug to you. Michelle Link to comment Share on other sites More sharing options...
Road bum Posted October 22, 2019 Author Share Posted October 22, 2019 Thank you so much guys. I’m a long way from giving it up. I’m going to keep digging until I can’t anymore. Its just as Michelle says, it’s tough to live with uncertainty. I would rather know. Ron Link to comment Share on other sites More sharing options...
Rower Michelle Posted October 22, 2019 Share Posted October 22, 2019 As they say in my adopted State of KS- Carry on wayward son! Link to comment Share on other sites More sharing options...
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