Enhertu Not Working? (Edit: Yes it works! But it works a bit more slowly than some of the others)

scohn
Posts:237

Looks like enhertu is not working?  Had blood tests today - Bilirubin is way up.  Hemoglobin down so my wife is getting another transfusion.

Her fatigue has been extreme these last few days.

Noun loss is getting worse, but we don't know if it is stress, brain function, or liver function.

 

She is getting new blood tests on Friday - we will let you know more then.

 

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Reply # - July 13, 2020, 04:04 PM

JanineT GRACE …
Posts: 661
GRACE Community Outreach Team

I'm sorry Scohn, I know this isn't what we want to hear.  I hope the transfusion will help with her fatigue and noun loss.  As someone who has always lived with word loss, fatigue makes mine a lot worse.  I will hope that enhertu just hasn't started showing its benefits just yet. 

Keeping you and her in my thoughts.

Janine

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

Reply # - July 13, 2020, 06:39 PM

Jim C GRACE Co…
Posts: 147

GRACE Community Outreach Team

I'm sorry to hear this scohn, but will join in Janine's hope that Enhertu has not yet had sufficient time to produce a benefit (certainly not unusual). We'll remain hopeful that it will display efficacy soon, and look forward to hearing some better news in your next update.

 

Jim C Forum Moderator 

 

Reply # - July 29, 2020, 10:17 AM

scohn
Posts: 237

Well, my wife has now had her 2nd Enhertu treatment, and the blood tests prior to the treatment suggest it might be starting to work.  If so, it looks like Enhertu is a slower, gentler, kind of treatment.  Her bilirubin, SGOT, and SGPT were down by about half, and her ALK was down about 30%.  She still has considerable edema in her legs, which the doctor thinks is because her protein and albumin are still low.  Put her on Lasix and compression stockings.

 

So, it looks like it might be starting to work, but we will know more with her first post-Enhertu CT scan in 3 weeks.

 

In the meantime, our anniversary in 2 weeks, followed by the 1st birthday of our grandson the following day!

Reply # - July 29, 2020, 02:10 PM

JanineT GRACE …
Posts: 661
GRACE Community Outreach Team

Hi Scohn,

 

That's (cautiously) very hopeful news!  So happy your family is celebrating 2 excellent anniversaries.  I'm keeping fingers crossed she continues to improve and edema calms. 

 

Cheers,

Janine

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

Reply # - August 13, 2020, 03:04 PM

scohn
Posts: 237

Just got our first post-Enhertu CT scan back.  The volume of most of the liver lesions is down by about 50-60%.  More importantly - Enhertu appears to cross the blood brain barrier!  While most of the smaller brain lesions are the same size, the largest ones have reduced in size by about 10-20%!  The liver lesions are still extensive, and the largest of the brain lesions is till too big for SBRT, but things are going in the right direction for the tumors for the first time in about 6 months!

So put Enhertu on the thumbs up list!

 

Reply # - August 14, 2020, 11:32 AM

JanineT GRACE …
Posts: 661
GRACE Community Outreach Team

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

Reply # - August 14, 2020, 11:48 AM

JanineT GRACE …
Posts: 661
GRACE Community Outreach Team

OK, maybe a couple of words. 

I know how excited you and The Fam are.  You've made my day too!!! and with everything going on I'll think of the happy, relieved hearts in your home when I've read one too many news articles (that would be one). 

I hope I infer this too often but you 2 are superstars and I'm sure you're lucky to have each other.

 

I hope it continues to shrink her tumors.

 

All the best,

Janine

 

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

Reply # - September 7, 2020, 09:02 PM

scohn
Posts: 237

Things are still going well on Enhertu!  Blood indicators all seem to still be getting better or stable.  And more importantly, the functional indicators!  My wife is feeling much better.  Sleep patterns still off (possibly from the steroids), but now has much more energy.  Two months ago she was unable to walk around the block, and now we have done several short walks together and she has enough energy to play with the grandson.  We had a great weekend with our kids and grandson to celebrate my wife's birthday (she wanted banana bread and not the cheesecake). Onward ever onward!

Reply # - September 8, 2020, 10:46 AM

JanineT GRACE …
Posts: 661
GRACE Community Outreach Team

Banana bread, less heavy equals even more energy.  Good call.  I'm so glad y'all were able to share the celebration with your children and grandson.  

Hurray for Enhertu, the drug developers, and the research oncologists!  

 

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.

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