jack14 Posted December 31, 2021 Share Posted December 31, 2021 Well, thecpain in my left shoulder and arm has increased to a level requiring narcotics. I have also lost strength and motor function. The CTs revealed progression of the supraclavicular lymph node and has been putting pressure on the brachial plexus. My oncologist has referred me to see the radiologist for radiological treatment that will be every day for a of couple weeks, I believe she said. She has discontinued the Keytruda which has kept the three tumors in my chest, from progressing for the past 18 months. Of which I am eternally grateful, regardless of where this nightmare ends. She will also appeal to the VA on my behalf for approval to try Trabecta for a met amplification. Or we will start chemo therapy. She seemed optimistic and assured me that the radiation treatments are extremely precise and that they have a special CT scanner which allows them to monitor the effects. I am concerned that the gamma radiation might damage my ribs, lung, or the brachial plexus itself. Can anyone tell me anything about this procedure? Thank you Link to comment Share on other sites More sharing options...
LouT Posted December 31, 2021 Share Posted December 31, 2021 Jack, Sorry to hear about your pain and that darned lymph node. I can't speak for chemo or immunotherapy but I've read a lot of posts on SBRT radiation treatment for tumors (I'm assuming that is what she is recommending) and it seems to provide very good results and outcomes. Tom Galli is a big proponent as are others who have had it. I'm sure you'll hear from others on this soon, but it does seem to be quite precise and effective in "frying the tumors". Please keep us updated as you go through this. Lou Link to comment Share on other sites More sharing options...
Tom Galli Posted December 31, 2021 Share Posted December 31, 2021 Jack, I'm very sorry to hear of your progression and pain. Precision radiation is indeed the thing that will stop both. To your oncologist's point, one form of precision radiation is a device that delivers image guided radiotherapy or IMRT. The gamma ray generator is coupled with a CT scan to very precisely guide radiation delivery in real time. Both the radiation oncologist and a physicist will work together to devise your treatment. The paths and dose delivered during each path will focus on the tumor with little or no spill over to critical organ or vessel structures. You may have only a few daily concurrent treatment sessions, each perhaps 30 minutes in length but shortly after your last treatment, your pain will be gone--so will the intruding tumor. Let me know if you need help with the VA on obtaining Tradecta for systemic therapy. I've got some ideas for your if needed. Stay the course. Tom Link to comment Share on other sites More sharing options...
Judy M2 Posted December 31, 2021 Share Posted December 31, 2021 Jack, I agree with Tom. Radiation is delivered only where it's needed. The team will first do a mapping session by CT scan. You may get one or more tiny tattoos (ouch!) to help the technician direct the beams. You can breathe normally during treatments because the mapping will have made allowances for it. The machines are very precise. Your pain should subside as the lymph node is killed off. Hope you get the approval for Trabecta. Link to comment Share on other sites More sharing options...
jack14 Posted January 1, 2022 Author Share Posted January 1, 2022 Thank you sooo much everyone! I am more optimistic and ready to get things done. And Tom, I have been on community care for this, going on two years this April, and I have noted that the communication of information between my oncologist and my VA PCP haven’t been very thorough. So, I have communicated my progress with my PCP via the VA portal. I’ve noticed that the PCP has a lot of influence and authority in regards to treatment. Despite it being managed by Community Care. So, with that in mind I have briefed my PCP on what’s going on. I advised her that my oncologist was appealing to Community Care for the Capotimib request and i mentioned a need for a ceiling trapeze to use in getting out of bed. I fell to the floor the other night and although I wasn’t hurt I found it quite difficult to get back up. This one arm thing is a real pain. Link to comment Share on other sites More sharing options...
Tom Galli Posted January 1, 2022 Share Posted January 1, 2022 Jack, That is a good strategy of involving your PCP in treatment. Loss of one arm is indeed a pain but mounting a ceiling trapeze can also be a challenge. You'll need to find ceiling joists and use at least 3/8" diameter wood screws penetrating the joist at least 2 and 1/2 inches to support the weight of your body. Drywall anchors won't even come close to supporting your weight. A better all around method is to roll to the side of your bed and get your feet down first. Then you can push off and up with your good arm Stay the course. Tom Link to comment Share on other sites More sharing options...
Judy M2 Posted January 1, 2022 Share Posted January 1, 2022 And to pile on what Tom said, go slow when getting up, even if you have to sit for a minute or more with your feet hanging down. Nurses and physical therapists want patients to use this strategy. Slow and steady. Link to comment Share on other sites More sharing options...
jack14 Posted January 2, 2022 Author Share Posted January 2, 2022 Thanks, unfortunately I know that procedure quite well. I never realized how much I depended on my left arm to sit up. I can do it with my abdominal muscles but it stresses m you hernia too much. I don’t mean to complain. And I know that there are many folks out there who are much worse off than I am. Some are much younger any many far less deserving than this old, but grateful man. Link to comment Share on other sites More sharing options...
LouT Posted January 2, 2022 Share Posted January 2, 2022 Jack, Who you calling "OLD"??? Nobody deserves this disease, young or old...and you deserve to be comfortable and NED as much as anybody else. Perhaps you can have a "handyman" come in and install the ceiling trapeze, if not then Tom's advice is quite good. Stay strong and keep going. Get whatever help you need to help you to be more mobile and comfortable. Lou Link to comment Share on other sites More sharing options...
jack14 Posted January 4, 2022 Author Share Posted January 4, 2022 Yeah, I was just chattering. Thank you brother, you are spot on. So, on Sunday night after I logged out of here I sent a letter to my PCP at the VA and got a superb response Monday morning. Never had such a quick response from them before. I suspect it was the word “fall” that triggered it. They seem to be obsessed with falling. They always ask me if I have fallen, right after they finish their covid questions at every encounter, I totally get it too. The head nurse said that they will notify the department that will get me hooked up with a trapeze to assist me. I want a ceiling mounted one. Amazon has them for about fifty dollars. Link to comment Share on other sites More sharing options...
Judy M2 Posted January 4, 2022 Share Posted January 4, 2022 Falling is a big deal in the medical world because it can be caused by an underlying condition. In your case, it's a temporary disability. Hospitals won't discharge patients home if there is a fall risk. That probably is why you got such a quick response. I understand your hernia situation, I have one too. Have to be careful not to aggravate it. Link to comment Share on other sites More sharing options...
jack14 Posted January 7, 2022 Author Share Posted January 7, 2022 Well, the radiology nurse called and scheduled a meeting with the radiologist for tomorrow afternoon. She said it will be a preliminary thing to assess my situation and decide on s course of treatment. Then, we will probably meet next Tuesday where they will mark the areas to be radiated. On a side note, I asked my oncologist during our last encounter if the tumor could restrict the blood flow in my arm. She said, no, the arteries are too strong. That was a relief. Link to comment Share on other sites More sharing options...
jack14 Posted January 8, 2022 Author Share Posted January 8, 2022 I met with the radiologist oncologist today and I liked him. I go in for a mapping and marking next Wednesday. He said that they would do 15 treatments. He predicted an 80 percent probability that I would have a positive response in regards to eliminating or decreasing the pain, regaining some or all of my motor skills. There is also a 20% chance that it could make things worse, or have no effect at all. He said that there are no side effects other than a minor skin irritation at the site where the beam enters. Anyway, that’s the latest folks. Link to comment Share on other sites More sharing options...
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