Jump to content

First update


Granmaof3

Recommended Posts

We have had the CT results from Davids first scan after 20 sessions of radiotherapy . It reads reduced size of the left hilar mass and mediastinal lymph nodes. No new sites of desease. Normal liver spleen pancreas and kidneys. No pleural effusion. Mediastinal mass at the upper aspect of the left hilum has reduced in bulk currently measuring 36mm x 22mm x 40mm. However dysphagia is now into week 22 post radiotherapy had endoscopy last week biopsy taken nothing found no stricture no candida no hernia. Now waiting for a pet/CT scan end of next week hopefully so see what is causing this. Also we have appointment next Wednesday with ENT to finally address the vocal chord paralysis after his mediastinoscopy in February. Oncologist pleased with the CT results after radiotherapy and did say that surgery may still be an option. I asked how at stage 4 he said no stage 3b I applied for his hospital notes and there it is 3b 🤔 original letter said stage 4 apparently human error when typing up the notes. Does anyone think the vocal chord paralysis is causing the dysphagia. It is only certain foods bread meat chicken  

Link to comment
Share on other sites

I have vocal cord paralysis caused by the tumor in my left lung, and my PET scans usually pick up some activity but it's disregarded by the radiologist. The paralysis is permanent. 

I did not have dysphagia from the paralysis. Maybe it's a temporary reaction. 

I had a bulk Teflon injection into my paralyzed left vocal cord before I started chemo and radiation (I'm also Stage IIIB). The procedure was surprisingly rough but it has given me some sort of voice. The anesthesiologist certainly did not give me propofel and I was sick from whatever she used. 

It sounds like David is responding to radiation. That's great! 

Link to comment
Share on other sites

Thank you Judy. The vocal chord paralysis is so debilitating and sometimes his voice sounds stronger and other days it is very weak. We cannot wait for the consultantation next week and hopefully he will get the injection. After the pet/CT David should be starting on the keytruda triplet. Can I ask what treatment you have had up to now. Kind regards Shirley 

Link to comment
Share on other sites

Shirley, I had 30 radiation sessions, 6 chemo infusions (carboplatin and taxol) and am now on Tagrisso. I have an EGFR mutation. I'm doing well and my scans are improving. 

My voice also varies and it's still an effort to talk. My ENT said I'd have to repeat the procedure after 12-18 months. Immediately after the procedure my voice was gravely but after a while it softened up. Besides any anesthesia side effects, David can expect to have a sore throat for a few days. There is no limitation on using his voice afterwards. 

When I wear a mask, people have a hard time hearing me. I bought a small, wearable voice amplifier that works pretty well. The brand is WinBridge. I think we found it on Amazon.

Good luck at the ENT. 

Link to comment
Share on other sites

Hi Judy thank you for the information for the voice amplifier I've never heard of this so will definitely look into it. Wednesday cannot come quick enough I don't think they are actually doing the injection on the day but I'm so excited to think that he may actually have a voice in a couple of weeks. Wishing you all the best. kindest regards Shirley 

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.