Update again ;)

[Moonbeam]

Good evening everyone. Today has been an informative day...met with his oncologist this am. Throughout this whole ordeal, he’s been the weak link. Very smart man however, hard to read. He lays out options and seems as if he wants my husband to “pick” which option is best. Is this normal? Don’t think so but his options were (1) immunotherapy alone (2) chemo + immunotherapy  (3)  double immunotherapy or study? The vagueness by me is because he took it off the table when he realized my husband was starting radiation tonight and would have to wait two weeks to begin and would have to be scanned to qualify. This leads me to believe it was some study. 

Regardless, we decided to start chemo + immunotherapy next week. He is being given a cocktail of carboplatin + Abraxane + pembrolizumab (Keytruda) with the hopes of shrinking what’s there, and destroying the cancer cells. Has anyone had this cocktail with a recurrence/progression? I’m so praying he responds. What should he expect from this cocktail? 

He just was called back to start his first radiation treatment. It’s every day for 5 days. 

Hope everyone is well. Any and all info or help is always appreciated

xx

Moonbeam 

just thought of something: the oncologist mentioned it not being in the brain right now. How does he know this? From Nov 18th MRI brain of from his most recent PET scan? We all know the answer. He doesn’t. So why haven’t they done an MRI Brain to make sure. Especially since it’s traveled to his spine and it’s back in the mediastinal region.  

[Steff]

Moonbeam,

My mom received Keytruda + chemo (carbo + alimta) for 6 cycles and then went on to Keytruda only for about 8 months.  This was for her lung cancer recurrence that was found on the back of her trachea 1 year after her first treatment for NSCLC ended.  In the spring of 2017, just prior to my mom's diagnosis, a study found that adding chemo to Keytruda increases survival rates.  My mom was offered the choice, just as your husband - Keytruda only or Keytruda + chemo.  Since my mom's tumor was close to the original area that was radiated during her first bout of lung cancer, it was recommended that she not have radiation.  But I have read that radiation and immunotherapy do great things when combined.  The treatment plan did the trick for my mom as she is currently NED.  While the chemo isn't a walk in the park, most side effects can be controlled.  

[Rower Michelle]

On 7/29/2019 at 6:29 PM, Moonbeam said:

Good evening everyone. Today has been an informative day...met with his oncologist this am. Throughout this whole ordeal, he’s been the weak link. Very smart man however, hard to read. He lays out options and seems as if he wants my husband to “pick” which option is best. Is this normal? Don’t think so but his options were (1) immunotherapy alone (2) chemo + immunotherapy  (3)  double immunotherapy or study? The vagueness by me is because he took it off the table when he realized my husband was starting radiation tonight and would have to wait two weeks to begin and would have to be scanned to qualify. This leads me to believe it was some study. 

Regardless, we decided to start chemo + immunotherapy next week. He is being given a cocktail of carboplatin + Abraxane + pembrolizumab (Keytruda) with the hopes of shrinking what’s there, and destroying the cancer cells. Has anyone had this cocktail with a recurrence/progression? I’m so praying he responds. What should he expect from this cocktail? 

He just was called back to start his first radiation treatment. It’s every day for 5 days. 

Hope everyone is well. Any and all info or help is always appreciated

xx

Moonbeam 

just thought of something: the oncologist mentioned it not being in the brain right now. How does he know this? From Nov 18th MRI brain of from his most recent PET scan? We all know the answer. He doesn’t. So why haven’t they done an MRI Brain to make sure. Especially since it’s traveled to his spine and it’s back in the mediastinal region.  

Hi Moonbeam-

I totally get why you are so worried about the MRI of the brain.  Been there done that too!  While MRI is total peace of mind, my doctor has been right all along.  He does a neuro assessment, which includes the reflex test, pupil dilation, and balance exercise.  Following each physical exam he said with fair certainty, there aren't any brain mets.  Even after this whole headache deal this month.   Go ahead and push for the MRI anyway it's worth the confirmation. 

As for the triple combo, I only had one shot of it.  What I can tell you is that the Keytruda made me sweat profusely at night (and we're not talking menopausal night sweats, these were drenching requiring two changes of clothes post chemo for a few nights).  I'd keep a change of clothes near the bedside just in case.   

The steroids do a great job of managing the side effects, however sleep will remain elusive for a few days, then comes the big crash where you need to sleep for hours. After that, I was back in business.   

Keep track of all the side effects along with the timing as they will rinse and repeat for round 2.   

Glad to hear that things are underway.   Keep going! 

Michelle