CH29

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!

Brother passed away at 4:30pm on January 12th.  Hardest thing I have ever been through, being at his bedside watching him transition.  😢 

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. 

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. 

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. 

Hi everyone 
So I spoke with the neurosurgeon and they are really pleased with the result of the operation and sure they got it all out, it is the same as my lung cancer so not a new variant I have a follow up mri scan December 28th and then every 3 months after that, he told me if i ever need them in the future they would be more than happy to help me again which was really reassuring to know,  i went to physio and have some really good excersises to do which I'm sure will help they were really helpful and happy with the progress I have already made my coordination is coming back great and the movement and mobility are getting better everyday, I feel so much better in myself now , I am gradually being taken down on the dexamethasone steroids which is both worrying and brilliant because I'm afraid things will go wrong if I stop them but glad to get rid of the bloatedness in my face stomach and neck it's so uncomfortable now and really don't like it I know it's a small price to pay but I just want to be myself again,
I went for a coffee and a mile walk yesterday with my wife and bonnie and it felt fantastic to just be out again I do feel very fatigued but was told to expect that for 6 to 8 weeks but I am sleeping better now I'm more mobile so all in all I am having some good news to update for a change lol, 
I hope everyone is doing well take care Justin x 

Hi everyone 
Sorry I haven't updated yet I wanted to get as much info as possible before I did, I had the procedure done on Friday and it was a great success they got the tumor out and now my right side has come back to life within 3 days I can now move around, the coordination is getting better too, there is some swelling and bleeding but they are really pleased with the results, I have no pain because they only cut through the scalp and skull and not much muscle I had a headache on and off Saturday and Sunday but nothing bad, the dexamethasone steroids are much worse than the operation itself I hate taking them lol, 
They said they will send the tumor away for biopsy tests and see what it actually is but they're pretty sure it is the lung cancer I just hope there is something I can take if or  when it grows back but right now I feel a lot better in myself about it all, I am really sorry I was down last week I feel like I let everyone down and made my family and all of you down with me I try to be supportive and wasn't, 
My friend has just been diagnosed with throat cancer and in his neck, I will support him through this the best way possible, 
I hope everyone is well and thankyou again for all the love and support I really couldn't have done this without you all and my family and friends and my puppy bonnie has been an absolute angel through this journey almost like she was sent from heaven to help me I love her so much and now hopefully can get back to walking her ,
All the best Take care Justin x 

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,
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.

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 - 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!

So sorry to hear that. I remember how I felt hearing that I had stage 4 adenocarcinoma NSCLC. That was a bit over two years. I had immunotherapy, target therapy, and now chemotherapy. I would get a second opinion if I got anything I didn’t like in regards to the treatment plan. I have been told to find a “comprehensive cancer” center if possible, as they typically get better results than those who lack that designation.

Immunotherapy and targeted therapy is a game changer for many of us! Trials are also a promising bet, as  I have been told. I think it’s also a wise idea to ask about palliative care to be added to the plan.
 
Last of all, I am getting my fifth chemotherapy infusion (three months so far),  as I am typing. It has not been that bad, hair loss and fatigue for a few days after my infusion. They have found ways to eliminate the agony many experienced in the past, so if they offer it, it’s worth trying. You can also halt it at any point.
 
Lastly, I would ask for a panel of genes from Foundation One to reveal any targetable gene mutations, if you haven’t gotten this information yet. It needs doing before any treatment.
Good luck to both of you!

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 - 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!

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.

Had my PET scan yesterday after 6 infusions. Almost complete resolution of the nodes and significant reduction in the lesions. Almost 70% reduction in lesion size and significant reduction in metabolic activity (SUV for some reduced to 2.9). Doc said minimal disease now, but wants to continue treatment.
Now on maintenance therapy, have dropped carboplatin and only onAlimta and Keytruda for another 5-6 infusions and then a PET scan.
Staying the course.

@CH29This is great news. Enjoy the results.
I am in the same space as your husband. I guess we are having the same journey. Had my PET scan yesterday after 6 infusions. Almost complete resolution of the nodes and significant reduction in the lesions. Doc said minimal disease now.
Now on maintenance therapy, have dropped carboplatin and only on Alimta and Keytruda for another 5-6 infusions and then a PET scan.
Enjoying my first good news in days. A toast to you too.

CH29,
How about that! I love good reports about treatment. Let's hope he's got a clear brain scan and things keep moving in the right direction. NED looks ahead!
Stay the course.
Tom

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!

Great to hear this good news.

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!

CH,
I'm happy to learn your husband's treatment is moving things in the right direction. That is grand good news.
Of course your husband is tired if working. I worked through 12 of my infusions and was exhausted. I also experienced times where my red and white cell counts were low and indeed received Procrit for the red and Neulasta for the white. Neulasta was very painful but both worked.
Stay the course.
Tom

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!

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!