The grueling wait for response to Keytruda (with MS status unconfirmed)

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LMighty
Posts: 81
Joined: Sun Aug 28, 2016 6:16 am
Location: Hong Kong

The grueling wait for response to Keytruda (with MS status unconfirmed)

Postby LMighty » Sun Jun 18, 2017 4:46 am

Hate to be a downer but I really need to vent.

So after my mom had her first shot of Keytruda on 5 June, she was hospitalized 4 times for pleural fluid and/or ascites tapping. The fluids in both sites reaccumulated rapidly as if actually worsened by Keytruda or progression. So rapid (~800 ml daily) that our onc decided to keep the initially temporary peritoneal tube inserted so we can drain the fluid daily at home. For pleural fluid though, most likely my mom will be visiting the hospital on a weekly basis to have it drained until it gets better. My mom can still achieve a satisfactory SpO2 but the repeated drainage seems to start taking its toll on her energy level. She is also not emotionally coping it well, waking up to symptoms everyday, fearing if all the the fluids are caused by progression or pseudoprogression.

I have rented an oxygen concentrator for home use. Just when I thought my mom would be home the next day, some ascites leaked from the catheter exit site and the skin turned a bit red. My mom is now staying at hospital for a few more days to make sure there is no infection. Meanwhile, our onc would like to drain the pleural fluid again depending on her scan tomorrow. The fluid was only drained on Thursday...

On the other hand, our onc has been pulling all strings to get a source of MEK inhibitor for when MS status test result turns out to be MSS. We are still waiting for the manufacturer's green light. Even if they yes, it may take 2 weeks for the drug to arrive. I really don't want to imagine what might happen in that 2 weeks without treatment.

So while Keytruda hardly caused any side effect for my mom, all the uncertainty in future treatments and symptom implication are very, very difficult to deal with. Less side effects, but more fear. Every time I look at the pinkish soft tissues in the ascites flowing out of my mom's abdomen via the catheter, I keep telling myself they are dead cancer killed by Keytruda. Our onc also said they may just are, but there is no way to tell.

We have heard a story of immunotherapy working like a miracle after 8 weeks of repeated fluid drainage. This is what keeps me going. This may also be what keeps my mom going. For how long, we don't know.
Supporter to my mom (64 yr); KRAS wild type; MSS

2012: DX Stage I, rectal cancer; resection and colostomy, no chemo
5/16: DX Stage III, mets found; right groin lymph node and soft tissue nodules
5-6/16: Radiation + Xeloda
7/16: DX Stage IV, pleural effusion; cancer cells found in fluid
7-12/16: Xelox + Avastin X 6
1/17: Clean PET scan, NED
2/17: Pleural effusion; recurrence
4/17: Iri + Erb X 3
5/17: Ascites; Chemo failed
6/17: Keytruda X 1
7/17: TECENTRIQ (atezolizumab) + COTELLIC (cobimetinib)

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Maia
Posts: 2364
Joined: Fri Aug 24, 2012 8:00 am

Re: The grueling wait for response to Keytruda (with MS status unconfirmed)

Postby Maia » Sun Jun 18, 2017 7:18 am

LMighty, I'm so really sorry to hear about the difficult situation your mom is. As you and her doctor said, it is about to keep waiting and hoping for a response to immunotherapy, which is always just a possibility, even for MSI-highs.
LMighty, you have made everything and more for your mom. And his doctor too (few doctors are proactive as he has been, to try immunotherapy as monotherapy for a possible or confirmed MSS patient), as he continues searching to add a MEK inhibitor. So, now, while you wait/pray/ hope for a response... enjoy your mom!
Take the time to do everything to have great moments with her, even if that means reading by her bedside, or going for a walk outside when she feels well... If she can spend time focusing in life, instead of the illness, she probably will feel better emotionally, and you too. What has to happen, specially the good, will happen. It is like all the work is done and now you both rest. And keep going, as you have said.
Sorry if my English is weird, as you, I'm not a native speaker. Sending my best strong thoughts and love from Argentina.

LMighty
Posts: 81
Joined: Sun Aug 28, 2016 6:16 am
Location: Hong Kong

Re: The grueling wait for response to Keytruda (with MS status unconfirmed)

Postby LMighty » Mon Jun 19, 2017 2:23 am

Maia, thank you for your kind words. Unfortunately my mom has pericardial effusion just now. No immediate danger but certainly life threatening. Our onc mentioned hospice as an option as frequent tapping from multiple sites (heart, lungs and abdomen) could be quite a suffering.

We are not giving up easily. At least not until the MS status is confirmed.
Supporter to my mom (64 yr); KRAS wild type; MSS

2012: DX Stage I, rectal cancer; resection and colostomy, no chemo
5/16: DX Stage III, mets found; right groin lymph node and soft tissue nodules
5-6/16: Radiation + Xeloda
7/16: DX Stage IV, pleural effusion; cancer cells found in fluid
7-12/16: Xelox + Avastin X 6
1/17: Clean PET scan, NED
2/17: Pleural effusion; recurrence
4/17: Iri + Erb X 3
5/17: Ascites; Chemo failed
6/17: Keytruda X 1
7/17: TECENTRIQ (atezolizumab) + COTELLIC (cobimetinib)

LMighty
Posts: 81
Joined: Sun Aug 28, 2016 6:16 am
Location: Hong Kong

Re: The grueling wait for response to Keytruda (with MS status unconfirmed)

Postby LMighty » Tue Jun 20, 2017 3:45 am

The pericardial effusion turned out to be false, confirmed by further scan. What an unhealthy amount of scare.
Supporter to my mom (64 yr); KRAS wild type; MSS

2012: DX Stage I, rectal cancer; resection and colostomy, no chemo
5/16: DX Stage III, mets found; right groin lymph node and soft tissue nodules
5-6/16: Radiation + Xeloda
7/16: DX Stage IV, pleural effusion; cancer cells found in fluid
7-12/16: Xelox + Avastin X 6
1/17: Clean PET scan, NED
2/17: Pleural effusion; recurrence
4/17: Iri + Erb X 3
5/17: Ascites; Chemo failed
6/17: Keytruda X 1
7/17: TECENTRIQ (atezolizumab) + COTELLIC (cobimetinib)

User avatar
Maia
Posts: 2364
Joined: Fri Aug 24, 2012 8:00 am

Re: The grueling wait for response to Keytruda (with MS status unconfirmed)

Postby Maia » Tue Jun 20, 2017 7:42 am

Ohh, those are very good news!! Sending many many good wishes!!


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