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Marcie

Father, 59, going through NSCLC diagnosis.

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Another update. Dad had his second infusion of Keytruda last Wednesday 8/9. His back pain is still pretty severe and was worse again after this infusion. When he complained of the pain, they went ahead and gave him a bone infusion before his Keytruda infusion. (He doesn't remember what the drug was called, or if they even told him.) The bone tumor is giving him a considerable amount of bone pain, so I'm not sure why radiation isn't an option. (He asked about radiation, since they told him it could be an option when they first discovered his bone mets, and that's when they told him he'd get a bone infusion to help.)

Pain aside, he is feeling pretty good. Slight bit of fatigue, but if the pain wasn't there, he said he wouldn't even really feel like he had cancer.

Here's hoping the pain is maybe just swelling from the Keytruda, which I've read happens after infusions. The pain does get a bit more severe after each infusion, so maybe?

Best,

Marcie

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Marcia,

Was the infusion for his bones called Zometa?  It is typically used when mets are discovered in bone.

Bone pain with cancer is a pretty common complaint and palliative radiation is most often used to relieve pain.  You might inquire why not radiation.  And, as you suspect,  the pain could be the immunotherapy reaction, we hope.

Stay the course.

Tom

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I'm Marcie's father. I was surfing the web looking for any information on Keytruda that I can find and ran across this forum

I was scanning the forum and discovered a post about a guy 59 years old and thought wow, a guy in a similar situation at my age! I quickly dscovrred it was about me(lol).

anyway, it really did my heart good to read my daughter's post and all the wonderful and helpful reply's.

My only correction to Marcie's post is that I have Squamous Cell Carcinoma.

Thank you all for helping my daughter. I was wondering how she knows all these things!

Most people ask Google, I ask my daughter!

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Welcome, Dad!  I do hope you'll think about my suggestion of allowing your daughter to talk to your doctors and obtain your medical info--it can be very helpful if you're not feeling up to snuff to have someone able to do the footwork.  I'm glad you appreciate what she's doing for you--I do what I can to help my own dad out (tough when he lives very far away but we've got a good system in place).  Of course, he's WAY older than you are (heck, I'M older than you are), so maybe you don't need so much help on a day-to-day basis, but with stuff like this things can change quickly and it would be much harder to put everything in place when you're out of commission.  Just a thought.

 

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Hi everyone. (And hi, Dad!)

Just to update: Dad had his 3rd infusion of Keytruda last Wednesday. It went well and he seems to be feeling fine, other than the pain in his bone mets. On September 18th, he's scheduled for a PET scan to see how things are going. His fourth infusion will be on September 20th. Hoping that we see some things shrink, but we'll settle for no progression! No matter the results, they will probably keep going until the 6th infusion, since results can sometimes be delayed.

Thanks again for the comments, Tom and LexieCat. It means a lot.

Best, 

Marcie

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Well, I go in for a PET scan on Monday. My 4th Infusion is scheduled for Wednesday if all is well with PET Scan and Blood work prior to my ONC appointment

My only side effects are the often reported fatigue and that seems to go for about 4 days after the Infusion. I also have some joint stiffness that seems to be persistent in my wrists and hands but is manageable.

My only real issues are with the back pain from the bone mets. They don't seem to let up and though there are days when it's not as bad as others, it is still painful. If it weren't for the pain, I would feel great.

My Oncologist tells me to not be discouraged after the next PET Scan if it doesn't show desirable results. Keytruda may not start showing positive results until later treatments (5 or 6).

I will know more next Wednesday.

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Ff,

Your description of results lag is in step with everything I've read about Keytruda. Like any immune system response, there are delays before results. 

I'd report joint stiffness at your consult. Back pain given your tumor locations is understandable. I hope you do not suffer from too much scanziety waiting for PET results. Good to hear from you. 

Stay the course. 

Tom

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Thank you Tom. I will talk about the stiffness at my appointment.

I will deal with the Scanziety, it is only 2 days after the PET that I get the results. None of this hurry up and wait compares to the emotional roller coaster I was on from DX to actually getting Staged with a plan of attack.

I will post my results regardless of the outcome for others to read about. 

Keytruda is so new as a front line that it's hard to find out what people are going through. I'll try to keep adding my experiences.

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I will let my dad chime in with the details (only got them from my mom so far), but he had his 4th infusion this morning and got the results from his scan. 

It looks as if all of his tumors have been shrinking, with the primary tumor going from 7.5cm to around 6cm. There were a few new small tumors in his liver, but hopefully those will also shrink by the time he has his next scans. The bone mets also got significantly smaller, so hopefully the pain will start to ease up as the tumors keep shrinking.

Overall, this is very happy news and hopefully the next few weeks will be filled with a little less anxiety for my parents.

Best,
Marcie

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Thank you Marcie! The results of my PET/CT scan showed reduction of the main tumor from 7.5 cm to just under 6.5 cm.

The Bone Mets have also shrunk in size.

There was was another small tumor that showed up on PET since last scan but the other tumors on the Liver are reduced. They say that there seems to be a little more Lymph Node activity in a couple of the Lymph nodes around the Liver but they think that it is likely reactions or inflammation from the Keytruda.

The Doctors considered this good news and seemed happy at the results so far.

The next Scan will likely only be a CT scan. They say that it's easier to measure progress with CT vs PET.

On the last appointment they made it a point to tell me not to be discouraged if the scan showed no  improvement or looked like my condition had worsened. They say that less than desirable results after only 3 infusions is common.

So, I'm happy with my progress so far and so is my Oncology Team. My next scan will be sometime after my 6th Infusion.

I did bring up the issue of Joint Stiffness/ tight muscles around the joints ( mainly wrists) but they didn't seem to think it was anything serious at the moment and asked me to call if it got much worse or painful. They are keeping an eye on anything I report.

I need to give a shout out to the amazing Oncology Team at my VA Mefical Center here in Indianapolis. I really do have a high degree of confidence in their ability! I'm very happy to be dealing with them.

Chuck

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Chuck,

Great news on your scan. I didn’t realize you are receiving treatment at the VA. There are several forum members obtaining their treatment in the VA system. All report good results, once the bureaucratic eligibility drill is complete. 

If the VA continues to satisfy, send an email report to your congressman. They always get complaints and might appreciate a good report. 

I’m a retired soldier and I’ve never had medical treatment at a VA hospital. We use the military medical system, but I’ve helped vets file for VA medical and disability benefits. That indeed is a complex process. 

Stay the course. 

Tom

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Here to update the thread - not much to report!

My dad has now had two more Keytruda infusions since I last posted. And one more Zometa infusion for his bones. He will have a another scan on Monday, November 20th, to check on how he is responding. He will get his results and next infusion the day before Thanksgiving, November 22nd. Here's hoping that the Keytruda continues to work and we see more shrinkage on the tumors.

Overall, he seems in good spirits. He is still working, other than taking off during his infusion week. Other than some fatigue the week after the infusion, his main obstacle is pain. The pain seems to vary day by day in terms of intensity without any rhyme or reason. After they see his results in the next scan, they'll explore some more options to deal with the pain from his bone mets. Possibly some radiation if they think it'll help.

I'll post more after the next results. Fingers crossed for good news!

Best,

Marcie

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Marcie,

My thoughts and prayers are with you throughout this fight.  I have stage 4 lung cancer with metastasis to my bones as well.  I am also on the Keytruda.  I can concur that after every treatment at least for me, I can feel my bones.  It sounds weird but the aches are there for sure.  I feel the same way and like to avoid all painkillers as much as possible but  I spoke with my doc who gave me a real light dose of codeine for when it really hurts but under my docs direction I have been able to mostly manage my bone pain with Motrin. 

I have Keytruda on a 2-week cycle, 1once a week twice and 1-week break.  They also started giving me a bone shot to help stimulate bone growth and that stuff is a godsend. If it gets worse for you father maybe that is something you can ask about because it has made a HUGE difference in my quality of life.

Best,

David

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Thank you for the comment, David. I'm so sorry you're dealing with the same, but I am glad your pain appears to be tolerable at the moment. I know my dad started just alternating between Ibuprofen and Aspirin, but he then went to Vicodin and I believe now is using Hydrocodone. He still uses it very sparingly, though.

I'm glad the shot is working well for you - my dad is also receiving Zometa infusions to stimulate bone growth, but I don't think he has noticed any difference. The bone mets are pretty painful for him. 

He had his most recent scans on Monday (yesterday), so we'll find out tomorrow as he goes in for his infusion how things are going. Here's hoping we see more shrinking tumors, or at least that things are stable!

I'll be thinking of you and following your progress, David.

Best,

Marcie

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Hi everyone,

Good news here. Dad got the results of his scan today. Looks like everything got smaller and there are no new growths! The spots in his liver shrank by about 50%, so did one of his bone mets. The tumor in his lung is over a 1cm smaller from the last scan. The doctor was very pleased and they're gonna keep going on the Keytruda and hopefully we'll keep seeing this kind of improvement.

My mom said he might start some physical therapy for the arthritis symptoms, but we'll see. 

Definitely a reason to be thankful this Thanksgiving! I'm glad he'll be entering the holidays with a little less worry and the optimism boost.

Best,

Marcie

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Yes, as my daughter has already said, no new growth or progression. The main tumor In The Lung is over a cm smaller than the last scan and over 2 cm smaller since starting treatments. Liver Mets are 50% smaller as are all of the Bone Mets.

The only real drawback is that I developed RA as a side effect to my treatments. I’m not sure if it is a permanent condition or not but reading whatever I can find, it may well be.

If RA is the price for living through Stage IV NSCLC then I’m okay with it!

Happy Thanksgiving everybody!

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Well my last CT Scan showed my Lung and Liver tumors continue to shrink. They did note what appeared to be minor growth or more than likely inflammation at the Bone met site at my 10th rib.

The Met at the 4/5th rib continues to cause pain as does the Met at the 10. 

I had increased pain at these sites the week before Infusion and got a little worse the week following.

Right now I’m on Day 5 of not needing Oxy to help with pain and I’m able to control minor spikes with Ibuprofen and Tylenol. I am still on 25mcg Fentanyl Patches. So I think things are improving.

The big surprise was that I filed for SSDI on an appointment at the SSA local office this past Monday. By Thursday last week, a check was already in my account! I’m amazed! I did make sure I had all the information on the checklist they provide.

I’m really impressed with speed at which all this happened. Maybe because all of my records are at Veteran Hospital, it is somehow easier for the process.

Anyway, the fight is still on and for now it’s working in my favor. I hope with being officially off work, I can spend time with family and concentrate on getting past all this.

 

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