It's back ... Time for a treatment reboot

[MarieE]

My husband had an upper left lobectomy in October and had started chemo when he contracted a serious respiratory virus (RSV) and had to stop. We decided to take a break over the holidays and his scan in January was clear. Then came COVID-19 so we put everything on hold. Unfortunately, his CT scan earlier this month didn't look good and he has also developed a large lump near the largest incision from the surgery. He was initially told it was scar tissue but it kept growing and becoming painful. So, a PET scan and biopsy of the lump confirmed that the cancer has spread and continued to grow in the lymph nodes. We are waiting for some final NGS test results to see whether there is a targeted therapy that would be an option. Otherwise it is looking like it's more chemo plus immunotherapy (Keytruda, as his PDL-1 expression is very high) and possibly radiation therapy. His cancer obviously is aggressive given that all of this happened so quickly, after having a completely clear scan in late January.

[Susan Cornett]

Hi, Marie. I'm sorry that your husband will have to have more treatment. After my lobectomy, I had chemo which bought me a few months of calm. But I then had two recurrences, more chemo, radiation, and SBRT. Lung cancer is persistent but with new treatments and therapies being approved so often, he will hopefully have good options. My grandmother's SCLC came back with a vengeance during chemo. Stupid cancer.

I hope you and your husband continue to stay safe from COVID-19.

[MarieE]

Thank you so much. All of this is nerve wracking. To have to deal with lung cancer and its treatment at a time when it seems the whole world has been turned upside down is almost too much. 

[G.A.M.]

It's been a slow slog for those of us who need treatment in the age of COVID-19, but it will ease up soon, I think, @MarieE. It has taken me from September 20th last year until next week to get to chemo. It's tiring waiting for the next thing. Stay strong.

Best,

Glenn

 

[MarieE]

Wow. Yes, we seem to spend most of our time waiting for tests to be scheduled and then for test results to be received and next steps determined. It is really hard. We are anxious to get things started but also worried about my husband's ability to hold up physically given his prior experience and now the added complexity of COVID-19. And this time around, I won't even be able to be there by his side since only patients are allowed in the facilities.

Wishing you all the best for your treatment. Glad that it is finally starting.

[Steff]

I'm sorry to hear about your husband's lung cancer recurrence.  I hope that a treatment plan is set quickly so he can "get the show on the road".

[MarieE]

Thank you, Steff. Initially his doctor said he had a RET mutation and there was a trial that was looking promising if his cancer progressed. Fast forward, and that drug has now been approved for commercial use, but it's now not clear whether he actually has the mutation. Waiting (impatiently) for yet another blood test to confirm.

[Steff]

The waiting is the worst!

[MarieE]

Bad news: No RET mutation. Good news: MET mutation. So this newly approved drug is being ordered: https://www.fda.gov/news-events/press-announcements/fda-approves-first-targeted-therapy-treat-aggressive-form-lung-cancer

We're also expediting radiation to treat the mass that has been growing on the chest wall since we can't afford to wait a month to see if the pills help with that. (Radiation had been on hold while it was determined whether the advice was going to be to go with chemo/immunotherapy or if there was a targetable mutation.)

[LouT]

MarieE,

Recurrence is our greatest fear and our bane.  I'm sorry to hear that this has happened to your husband.  I was reading your link on Trabecta and it sounds promising, but as all chemo, potentially with side effects.  Your husband is in my prayers for a positive response with few side effects.

Lou

[MarieE]

Thank you, Lou. Radiation starts tomorrow on one problematic mass and we have a two week free trial of Tabrecta on the way. 

[LouT]

MarieE

You and your husband will be added to my prayer list...

Lou

[LUNGevityKristin]

Thinking of you and your husband.  Please keep us updated on how he's doing.

[MarieE]

Thanks. He didn’t have a good night last night. We’re relieved, though, that things are finally moving along with radiation and the Tabrecta will be delivered on Monday. 

[MarieE]

First radiation done ... 15 more to go over the next couple of weeks. Encouraged to finally be taking some action. 🙂

[LouT]

MarieE

it’s always better when we can do something instead of waiting   Glad you folks are “in action” now and all fingers and toes are crossed for good results  

Lou

 

[Deb W]

Marie,

Thinking of you both and hoping for a good outcome.

Deb

 

[MarieE]

2nd radiation session went fine today and we heard that we got approval under Novartis’ assistance program since Tabrecta is not covered by our insurance at this point. My husband will start the drugs on Monday. 😊

[LouT]

Good to hear Marie.  Things are moving along for you and that’s a good thing.  Fingers crossed.  
 

Lou

[MarieE]

So my husband had his 7th radiation treatment this morning. He's been complaining of pain in the area of the tumor on his chest wall over the last couple of days and it got bad enough to call the doctor this afternoon. Unfortunately, we won't be able to pick up a prescription until Monday. Why does it always seem that things seem to escalate as the weekend approaches? 😟

On the positive side, he's on his 4th day taking Tabrecta with no side effects except for possibly a bit of nausea. Fingers crossed that the treatment starts kicking cancer's butt to the curb!