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Marcie

Father, 59, going through NSCLC diagnosis.

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Hi everyone. Just saw my dad updated so I figured I should chime in.

I saw him around the holidays and he seemed a lot better than when I saw him in October. He was able to move around a lot more easily and it seemed like less of a struggle for him to get up and down from the couch. In October, he didn't really move from the couch unless it was absolutely necessary. In December, I saw him getting up and quietly sneaking to the holiday snacks NUMEROUS times. :)

Other than the pain in the bone mets, things seem good. He was offered radiation on the bone mets at his next appointment (2/14), but he doesn't think he will take them up on it since the pain seems to be lessening. Here's hoping that continues!

Will keep you guys updated on his next appointment.

Best,

Marcie

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Just another update: my dad's last CT scan (8 weeks ago) showed maybe some slight progression in some bone mets.

Today he had another CT scan.  Mixed results. 😞Some liver spots shrank, some grew, some stable. Lymph nodes near stomach grew. The primary tumor in his lung grew a bit. Some bone mets grew. Disappointing news. It's looking like they'll keep him on Keytruda, though. His next infusion is on Wednesday. He's waiting on a call to schedule radiology for the bone mets (and possibly some other spots.)

Here's hoping radiology works and we start seeing some more results. 

I've read a lot about how low-carb diets seem to really help the effectiveness of immunotherapy and slow progression - I don't know how true that is. (Nor does anyone else probably, really.) My dad was eating a pretty strict low-carb diet but the past month and a half he has reintroduced carbs as a big part of his diet. Can't help but wonder how much of an impact, if any, that had on the current scans.

Here's hoping the next update will be more positive!

 

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Just an update.

Tomorrow my dad goes in for his next Keytruda infusion. Today he met with a radiologist. He's going to get some radiation done on the bone met that is causing him the most pain. He'll stat next Monday and go Monday-Friday for two weeks. The doctor seemed pretty confident that it would provide him a lot of pain relief, so here's hoping! (Maybe he should've insisted on radiation sooner, since it surely would've provided him with a lot of pain relief and given him an easier time of relaxing. He wanted to go as long as he could without, though.)

His oncologist told him there were a lot of studies being done lately and he just attended a conference where they looked a the benefits of radiology with immunotherapy and how it can often deliver a boost to the area and make immunotherapy more effective. Here's hoping we get those results!

 

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I hope all goes well for him!  I have read about radiation + immunotherapy as well, lots of exciting stuff happening in the immunotherapy world!

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Marcie,

I've also read of the immunotherapy boost that radiation provides.  I'll search on my sources and see if I can provide you the links.

Hope your dad gets some pain relief fast.

Stay the course.

Tom

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Thanks for posting an update, Marcie! I hope the new treatment has great results for your dad! Please continue to keep us posted.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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Hi everyone.

Another update. Keytruda stopped being effective for my dad. After the last mixed results scan we were uneasy, but today's scans showed some progression in all tumors.

In two weeks he'll start on a combo of Alimta and Carboplatin. Anyone have any insight about this combo or things I should be reading? They have 6 rounds planned for him and then some maintenance rounds every 3 weeks after. They'll take it treatment by treatment and see how he's responding.

This was a shock because he had been feeling the best he has felt since his diagnosis after radiation. We're a little nervous about chemo since immunotherapy was pretty mild. 

Thanks so much for any input!

Marcie

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Marcie,

I am so very sorry to hear that Keytruda stopped being effective. My mom had 6 sessions of carbo & alimta when she first started Keytruda. She had a harder time with it than when she first had chemo (I can't remember which one(s) she originally had).  After each treatment, she had flu-like symptoms for about a week - muscle aches, no energy, a tiny bit of nausea (controlled by Rx) and constant acid reflux (that was eventually controlled by meds). They started about 2 days after treatment.  Since she was having chemo combined with Keytruda, she received her chemo every 3 weeks.  It was a long haul, but she made it through.  Since chemo side effects are often the same week to week/infusion to infusion, we just planned any major events around when we would know she would be feeling bad.  

Take Care,

Steff

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Marcie,

I had a slightly different pairing of conventional chemotherapy: Taxol and Carboplatin.  It appears your doctor believes pemetrexed (Altima) is a better drug combination for maintenance therapy.  I had nearly two years on maintenance therapy, my last infusion cycle added the targeted therapy drug Tarceva to Taxol and Carboplatin.  This was before doctors understood that Tarceva would be ineffective against my squamous cell non small cell lung cancer, but Taxol and Carboplatin kept knocking back my tumors.  

Steff has revealed the secret to conventional chemotherapy side-effects.  Once they present, they occur in the same time period after each infusion.  If they present, it is a good idea to record the timing of the side-effect onset by hours after infusion.  I also had success taking side-effect mitigating medication about an hour before the scheduled side-effect onset.  My chemo nurse gave me that advice and it worked for me.  In my case, I experienced one sleepless night the evening after infusion (likely from steroids) along with very intense hunger.  My nausea symptoms started about 24 hours after infusion and didn't happen at all if I took my anti-nausea medication about an hour before projected start.  My most troubling side-effect was joint pain and it started about 48 hours after infusion and lasted several days.

Many tolerate Altima and Carboplatin very well.  So hopefully, side-effects will be minimal.

Stay the course.

Tom

 

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Thanks so much for the response, Steff and Tom. Always nice to hear from people that have been through it and have some insight!

Here's hoping the side effects will be minimal! I'll make sure my mom tracks the symptoms, that way they can know what to expect after the second infusion. A friend of mine has a father that is now on maintenance infusions of Alimta and he says it is so much easier than the initial 6 doses - so we've just gotta get through that! He is going on his 10th month of maintenance and is still exercising and working - so I'm hoping my dad will have a similar experience on maintenance treatments.

Since cancer is always changing, do you think they will eventually do another biopsy to check if his mutations have changed? I'm not sure how common that is.

Thanks so much,

Marcie

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Hi everyone. Just figured I'd update the thread.

So far my dad has completed two rounds of chemotherapy. He just did his 2nd round on July 5th. I'm in town, so I got to go along and meet his doctors and nurses, which was nice.

So far, he seems to be tolerating it very well. Occasional nausea and fatigue, but that is to be expected. Honestly, probably some of his nausea/fatigue probably comes from the fact that he is doing too much around the house. Running errands, mowing the lawn, etc. 

Only 4 more to go before we're on maintenance! Here's hoping his symptoms continue to be manageable!

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Thanks for the update, Marcie! I'm glad that you were able to meet his medical team. Please continue to keep us posted!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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Hi everyone. 

Just an update. My dad finished two rounds of chemo and will be going in for a CT scan tomorrow (7/23) and getting the results at his next infusion (7/25). Things seem to be going okay, but I think he has overexerted himself. He went camping 7/15-7/20. It was very hot/humid and I think he just did too much. Lots of sitting outside, probably too much conversation without any naps or rest, moving around and starting campfires/running the grill 2x a day, etc. Then the day after he got back (after all that loading up and driving the 5th wheel and truck home, which is tiring itself!) he decided to go buy a new lawn mower and mess around with that. Today he has spent most of the day in bed and has hardly left it, though his appetite seems good. Hopefully he's just getting some much needed rest.

It's hard to get him to take it easy and accept more help from everyone around him.

He is no longer feeling nauseated at all, just a lot of fatigue. His shoulder, where a bone met is, is still bothering him. Otherwise no new pain.  Here's hoping something shrunk or that things have remained stable!

 

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Glad to hear that he got out and had some fun! I think many of us pay for our fun afterwards whether we have a chronic illness or not.  It's hard to accept that you can't do the things you once did. My mom still wants to walk 1 million miles per hour and wonders why she can't breath after a few seconds! My parents like to camp too and my dad isn't able to help much with packing anymore.  My mom was still trying to pack everything the night before and then would pay for it the next day(s). If he's been doing good up until this point, it's probably just a much needed rest.  

Keeping my fingers crossed for a clean CT

Take Care,

Steff

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Hi, Marcie,

Sounds like Dad had a great time.  I remember going on a horseback riding vacation in Spain right after I'd injured my back.  I insisted on riding anyway.  After an hour of pain the first day, I came back and rested and soaked it and applied heat and stretches.  I was able to tough it out the second day but was in pain most of the rest of my trip (riding was only the first two days).  As painful as it was, I would not have missed the chance to ride in the mountains near Barcelona for anything!  Sometimes it's just plain worth it.  :)

Will keep fingers crossed for a good scan result--keep us posted!

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Hi everyone!

Just giving an update. My dad got his results last Wednesday and they were pretty good. His primary tumor was 1.2cm smaller and some lymph nodes shrunk as well. Everything else remained stable. But no progress is good news, so it's hard to ask for much more than that. Not sure if he'll have a scan before the 5th treatment or just after the 6th. We'll see. Other than some extreme fatigue and the usual pain from bone mets, he appears to be doing pretty well. He runs a few errands each day and mows the lawn far more than anyone ever should. :)

My mom felt a little down that their doctor reminded them that they need to stay realistic and that they are just prolonging life. I get that it was a bummer, but my mom is English as a second language so I'm hoping she just took it the wrong way. And it is important to keep in mind that they will never cure his cancer, but that doesn't mean he can't hang in there for many more years on some treatments. We're all staying very hopeful.

 

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As you mentoned, it is important to keep in mind that they will never cure his cancer, but that doesn't mean he can't hang in there for many more years on some treatments

Hope our family members could hang in here for many many years!

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