Jump to content

Pet scan much worse


Mona123

Recommended Posts

Today my husbands PET scan from yesterday results arrived.  His last scan was 6/25/21.

He has not started treatment yet, his first chemo is scheduled for next Tuesday.  He was diagnosed 6/18.

His was staged at T4N2m1c non small cell carcinoma RLL with mets to bone PS1 by Moffit Cancer Center in Tampa.

I am overwhelmed with the changes that have occurred in 60 days.  He has more than 10 new lymph nodes in his subcarinal and chest area lighting up, where there were only 3 on last scan.  His bone mets has advanced to addition of 3 new sites, and the intensity of the first lesions identified have increased.

The positive findings are no mets to liver, kidneys, bladder or stomach. also, his left lung is clear.

Unfortunately, he has pulmonary fibrosis, so radiation is out of the question due to inflammatory response.  Any treatment he has is palliative,  and he main focus is for pain management and quality of life. 

I am devastated to see this pretty significant advance in such a short time.  His pain has been worsening, now I know why.

I'm so scared for him, and for me!

Any one have experience with this quick disease advancement?   Any thoughts about what is ahead of us?

Link to comment
Share on other sites

Hi Mona,

So sorry to hear about your husband's condition and the advance of the disease.  I myself have never had chemo, my treatment so far has been surgical.  But I know you will hear from others soon who have had the same or similar treatments.  BTW the TMN rating for cancer is based on Tumor, Nodule and Metastasis.  But with the mix of numbers I really can't decipher the stage except that it has metastasized.  But regardless of stage, there are treatments that can reduce growth and bring physical comfort.  Please let us know any other details you learn and the next steps.

Lou 

Link to comment
Share on other sites

LouT thanks for the response.  Glad you had a surgical intervention, that bodes well for recovery and cure.  

My husband is stage 4 adenocarcinoma primary right lower lung.  Unfortunately, as we battle this, he also has pulmonary fibrosis from agent orange exposure in Thailand/vietnam.    He has never smoked, no other exposures.  ugh.  One day at a time is my mantra, and my role is to make each day the best it can be for my fabulous husband.

Link to comment
Share on other sites

Mona,

First I want to recognize your husband for his service, thank him for me.  I had friends in 'Nam and one in particular suffered because of Agent Orange.  So I'm sorry to hear about that for your husband.  

There is something I'd like you to read.  I share this with almost all new members.  It was written by Tom Galli (former military man and 16-year survivor of Stage 3 cancer) and it is titled; "10 Steps to Surviving Lung Cancer; by a Survivor" and you can find it here.  Your mantra is a healthy one since that is all we can and should do.  Please make sure they do biomarker testing on any biopsy they take.  As a non-smoker your husband may be one who is qualified to have immunotherapy to get through this.  Also, stay in touch with us as you learn more.  It can help members to know the best information to share with you.

Yes, I was lucky that my LC was found at a very early stage, over two years ago and so far all scans have been stable.  I look forward to hearing future news that your husband has the same situation.  Stay strong, learn all you can, stay connected to your medical team and us here.  We'll go through it with you.

Lou

Link to comment
Share on other sites

I'm glad your husband will begin treatment soon.  I just wanted to share a little bit about chemo for lung cancer: https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/types-of-lung-cancer/small-cell-lung-cancer-sclc

We also have a Facebook group and host monthly meetups just for caregivers in case you are interested.  We are here for you.

 

Link to comment
Share on other sites

LouT, I will read the information.  we had Guardant testing, and he has no cancer cells identified with a target, so no immunotherapy. 

He will be doing a cocktail of cisplatin and Alimta.  

LUNGevityKristin, I am a Registered Nurse, have lots of information on each of these chemotherapies.  I am not an oncological nurse specialist, so I have immersed myself in the information available on many professional source boards, and, of course, have reached out to my colleagues who work directly in this field.

There are so many therapies that provide good results now, I am cautiously optimistic.  

thanks for providing the link, I will certainly review the information.

 

 

Link to comment
Share on other sites

Looks like Kristin accidentally sent the wrong link--she sent a link for info about small cell lung cancer. I think this is the one she meant to send: https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/treatment-options/chemotherapy

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

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