Jump to content

Dad's Stage IV NSCLC (updates)


Holdonhope

Recommended Posts

Some updates, dad completed his 3rd round of chemo last week. He is doing better, now able to walk >10 blocks, really doesn't get short of breath anymore and his oxygen is always around 96%. He is just weak from the chemo. He also gained about 5 lbs. I took him to a large cancer institution (MSK) for a second opinion and said that they would not do anything differently than our current oncologist. Going for a PET CT and brain MRI this Thursday. I am dreading it :(

Link to comment
Share on other sites

  • 3 weeks later...

4th round of chemo and immunotherapy done. Scans done as well. The main tumor shrank by 50%, the little nodules in the opposite lung disappeared and the pleural effusion is halved in size. It seems most likely chemo is working. My fear is when chemo stops after 2 more cycles then it will be just immunotherapy. My dads Pdl-1 levels and TMB is low. But I am grateful for these victories for now

Link to comment
Share on other sites

Holdonhope,

Your dad's treatment is combination chemotherapy with immunotherapy. Many with this type of treatment go on to have what is called  maintenance therapy with immunotherapy after a period on conventional drugs. And, thankfully, tumor reduction and elimination continue. Combination chemotherapy is a relatively new method, and I don't have any easily understood literature to link. But, things are moving in the right direction so celebrate!

Stay the course.

Tom

Link to comment
Share on other sites

  • 1 month later...

Been a while since I updated. Dad completed chemo. A total of 6 rounds. lately he feels back to normal, which is good news. He has scans scheduled for next week. Then on the keytruda only every 6 weeks. I’m trying to figure out a better game plan as he is Pdl-1 negative and low TMB. I’m just glad chemo is over for now. My dad was not a fan 😕

Link to comment
Share on other sites

  • 2 weeks later...

Scans look good. Man tumor in the anterior mediastinum unchanged in size ~2cm. Pleural effusion is gone. My dad started double dose of keytruda last week. He will get it every 6 weeks. He is feeling pretty short of breath. His pulse ox remains above 92. Could this be from the keytruda. He will see the pulmonologist on weds. Anyone has any experience on this?

Link to comment
Share on other sites

Holdonhope,

What causes low pulse ox levels? A short answer is lung cancer. When lung tissue becomes metastatic, it no longer supports respiration. So active and dead tumors drag on respiration efficiency. Here are some tips.

Have your dad's pulmonologist evaluate for supplemental oxygen, particularly when sleeping. Might your dad have sleep apnea? I do and have used a CPAP device since 1990, but 2 years ago, my GP gave me a special pulse ox reader that captured my O2 level while sleeping. Over the course of 3 nights, the results showed my O2 saturation dropping below 90 while sleeping, even while using the CPAP machine. Now I have and use an oxygen concentrator that is attached to my CPAP machine and am getting high quality sleep. I also don't feel the energy drag I once felt.

I wouldn't know if Keytruda causes respiration efficiency problems; that is a good question for the pulmonologist. I've not heard that it does.

Stay the course.

Tom 

Link to comment
Share on other sites

  • 1 month later...

dad just got a ct scan which shows worsening tumor progression :( keytruda monotherapy seems like it is not working. It makes sense since his Pdl-1 is negative and have a low TMB. I’m dreading the next steps. We have an appointment with the oncologist next week. There seems like there is no clinical trails for his mutation (tp53). Man this hurts

Link to comment
Share on other sites

  • 3 weeks later...

So spoke to a few oncologists. I have been trying to get my dad into a clinical trial, namely a trial in TIL therapy, since recently it was shown to work really well with melanoma. I almost got my dad enrolled but the company abruptly closed the trial :/. We are moving treatment to a large institutional cancer center with more access to trial. For now they told us the treatment will be docetaxel and cyramza every 3 weeks. I feel like options are running out :( trying to find a silver lining and hoping that this regimen will allow my dad to find a good clinical trial in the future.

Link to comment
Share on other sites

I’m really sorry to hear this update and wanted to let you know if the TILs trial is closed there is another lesser known trial led by Michael Caliguiri MD at 

https://www.cytoimmune.com/about-us/

it might be worth a phone call… 

Link to comment
Share on other sites

  • 2 weeks later...

Thank you for Rower for the info, unfortunately there is no carT trials around where I live and my dad does not want to travel far. My dad had docetaxel and cyramza  as second line at the large cancer center. Initially it was planned to be given every 3 weeks but the oncologist changed it to docetaxel weekly on the day of chemo. I am not sure if this is standard procedure. Anyone heard of getting chemo weekly for lung cancer? It seems really tough and toxic.

Link to comment
Share on other sites

I had weekly chemo, but with different drugs than your father is getting. Every treatment plan is different. 

I ave no other suggestions for you, other than to try to stay hopeful.

Link to comment
Share on other sites

  • 1 month later...

Some updates, recent scans showed possible progression with  ramucirumab and docetaxel. Our oncologist suggested starting a clinical trial. It’s a phase one modified IL2. We were all looking forward to starting however during trial screening there were new brain lesions :( 18 very small ones. I am devastated. Waiting to here back from the oncologist if my dad is still eligible for the trial

Link to comment
Share on other sites

Oh my, this is not good news!

Numerous small brain lisions are often treated with whole brain radiation. It can be effective but as you may suspect, it holds the possibility of neurological side effects. My best advice is to find a sophisticated cancer treatment hospital with the latest radiation technology. Thankfully, you live in an area where many of these institutions are located.

Stay the course.

Tom

Link to comment
Share on other sites

It sounds like your dad's cancer is responding to the chemo. That's wonderful news. Try to focus on that until you get to MSK. 

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.