CH29

This is so very similar to what my husband went through. I'm very sorry. It's devastating, watching someone who should be in the prime of their life go through this.

Thank you for the information you shared. We did receive a report with drug options, although not through Foundation Medicine to my knowledge. I'll check into the foundation. I've also notified local and state contacts about the radon, as well as neighbors, and even used my own detector to check their own homes (no one has come close to the levels in my own home). Too bad it's not a real estate requirement to have the levels checked upon purchasing a home here. Take care!!

Hi - Just a follow up to my note above. I went back and looked at the pathology results and they did test for RET but it came back negative. The only thing found was an uncommon ALK deletion mutation; however not one that qualified for a targeted therapy.

Hi, Two of our tests came back at 13 pCi/l for the 48-hour average. At this point I bought the electronic detector while waiting for the mitagation, and saw it go as high as 44 pCi/l during a storm. My husband is a 45 year old non smoker with no family cancer history. I've never heard of RET but will definitely ask his oncologist about this. So glad I came across this post!

My husband was diagnosed with lung cancer earlier this year. I of course wanted to understand why, and had our house tested for radon. It was high. We've since had it mitigated. But it's difficult not knowing if that was the cause of his cancer. We had lived in the home for the prior 10 years and raised our now teenagers here. Currently my plan is for myself and the kids to get chest x rays annually to try to monitor just in case it was the radon. Very scary. In the area where I live people don't seem to know much about radon, and the doctors I have mentioned it to never really comment or don't seem very familiar with it. I bought the RadonEye monitor to keep an eye on the levels going forward.

It very well may have been more than just the Keytruda. If the doctors can determine a definite cause I will make sure to post that update.

My husband completed six rounds earlier this year of Carboplatin, Alimta, and Keytruda for NSCLC, with great success. The plan was to continue with Keytruda only. However, it was noticed in his bloodwork that his kidney readings went from wonderful to terrible in a quick timeframe around the time of his last treatments. They stopped all treatment and put him on Prednisone to try to take time for the kidneys to heal. However, they kept declining to the point of renal failure. The excess fluids even landed him in the hospital on a ventilator because he could not breathe. He is now recovering but having daily dialysis treatments for the past week. This is terrifying. The doctors all seem to think this is one of the rare side effects of Keytruda. I have no idea what we are dealing with as far as dialysis in the future, or lung cancer treatments at all for that matter. I've not had luck finding someone with this type of case. I'm at a total loss as to next steps. The doctors seem to be focused first on getting him through this immediate hurdle with his current hospital stay, but I can't help but think ahead.

Hi - Just checking in with an update. I always think there must be someone in the same situation that may benefit from these posts. So my husband finished his chemo. Around the 5th round of Carboplatin, Alimta & Keytruda his bloodword went into the tank and he had to have a few blood transfusions. For the 6th round they dropped the Carbo and gave a reduced dose of Alimta and the Keytruda. The latest CT scans after this were good and showed continued improvement. 'Near complete resolution' of lymph nodes was great to hear. Also liver mets were decreased in size again. At this point the plan is to do a Keytruda immunotherapy infusion every 3 weeks, so hopefully that will continue with good results. Also - I requested a brain scan after reading all the posts on this site. It had never been suggested, I guess because he had no symptoms. Luckily it was clear. Take care all!

Hi Gautham, Just chiming in here as well. My husband received a diagnosis this year that sounds similar to yours, age 45, two teenagers. He has just had his 5th round this week of Alimta/Carboplatin/Keytruda. The scan results show that this is working to reduce the cancer. I believe he will have one more of the same and then they may change the meds but am not sure to what exactly. I understand the shock of it all, I do think it can be helpful to know that you are not alone and find others in the same situation sometimes. I find reading other's positive stories is very helpful.

Update on my husband...After 4 chemo treatments + immunotherapy, another CT was done. This one showed continued improvement over the previous scan, so good news. Doctor wants to continue with the same treatment for a couple more times since it's working and being tolerated fairly well. His red blood cell counts were low today, so the next treatment was postponed a week, and he was given a shot to raise the red blood cells. He's still working a fairly active job but has been so tired when he gets home and doctor thinks that's why. For background, my husband is 45, non-smoker, no bio-markers. I sympathize with others on here because it can be quite the roller coaster to find the correct diagnosis; in our case it was a year of many doctors visits and different doctors before cancer was confirmed. Take care all!

Hi Sajid, I'm so sorry you must be here. But to chime in, my husband was also similarly diagnosed this year at age 45 with metastatic adenocarcinoma, which had spread to lymph nodes, liver and spine. After his first chemo treatment over two months ago, there was noticeable improvement with his health. You would not even know he was sick now to look at him. I do hope the same happens for your wife, and understand the distress you are experiencing.

Thanks for the above Tom, I have read your story and it was very inspiring. Next, an update. My husband had his third round of chemo today. Prior to this we met with the doctor for results on a CT from this week. The doctor was very pleased with the progress - his cancer has shrunk, in some areas significantly. I had hoped for a good report, because he has just seemed better all around since treatment started (less pain, gaining some weight back). Finally, some good news!!! Also, I had our home checked for radon and the levels were high, so we had that remediated. We've lived there for 10 years and have raised our two children in this house, so another thing I'm trying not to worry about. In our area no one ever talks about radon, this was something I knew literally nothing about

After a shocking first oncology visit last week to learn my hubby has metastatic adenocarcinoma, he went Friday to have a port put in and a pet scan. Yesterday we met with his doctor and were told he has mets to liver, bone, lymph nodes. Definitely not what we wanted to hear but yet here we are. Tomorrow he starts chemo (Keytruda, Alimta, Carboplatin). He goes every 21 days for treatment and after two rounds they will do a CT to check progress. Praying for a positive reaction to the treatment. The positive stories on this site are always so helpful and give hope.