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Marcie

Father, 59, going through NSCLC diagnosis.

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Another update: My dad had his 4th carbo/alimta treatment today - I think he's still scheduled for a 5th at the moment , but they're going to do another CT scan and see how things are going and maybe stop at 4 before going on maintenance. (I've read often that there's not much benefit after 4 for his situation? But I'm not sure.) Blood work was still okay but he is a bit anemic.

He has been having a lot of pain in his left shoulder, but it's not an area where he previously had a bone met or anything, so they are thinking it might be a torn rotator cuff problem. I've read this can often happen on chemo. I wonder why? I guess we'll know more when he has his next CT scan!

Anyone else stop at 4 instead of 6? Anyone know about rotator cuff issues and chemo?

Thanks!

Marcie

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Marcie,

My mom's situation was a bit different...her initial treatment plan was 8 sessions of carbo/alimta + Keytruda.  She only finished 6 of the 8.  Docs said that her cancer seemed stable and they were likely doing more harm than good in having her finish the last 2 sessions.  She then went on to Keytruda only.  In thinking back, her mass had shrunken (and was possibly gone, but we can't know for sure due to where the mass is/was), after 3 or 4 infusions.  Her mass is on the back of her trachea, she had to have a stent in her trachea because the mass has grown enough to reduce her airway by 70-80%. But at the 3rd or 4th infusion, she was able to have the stent removed and the doc did not see any sign of cancer at that time.  So, it's a bit different situation with my mom having Keytruda but cutting my mom off of the chemo a bit early has not had a negative effect on her cancer.

As far as the shoulder pain...my mom had severe shoulder pain after her lobectomy.  At the time, she was really worried it was a bone met.  It wasn't and the doc explained that we have nerves in our lungs that correlate to our shoulder.  The inflammation from my mom's surgery had caused inflammation and damage in the nerves which caused pain in the shoulder.  If your dad hasn't done anything to warrant the concern about a torn rotator cuff, maybe it could be inflammation of the nerves in the lung????  Just a thought.  I'm keeping my fingers crossed in the hopes of a great looking CT scan for your dad.

Take care,

Steff

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You mentioned anemia. My primary doctor asked that I take iron and Vitamin C two times a day. It really helped. My oncologist and another doctor mentioned iron only..which helped a little.

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My PET scan and CT scan was one week ago. I have not heard from the radiologist yet. He said he would need 3-5 days planning. I was actually hoping not to be contacted this week. It is nice to have time away from treatment. I had anxiety before the scans because I have some claustrophobia issues. I don't have much anxiety waiting. I was declared "cancer free" after surgery in February. If I have signs of cancer after chemotherapy, I will not be happy and may rethink radiation locally. It might push me back to M D Anderson. I am excited to return to line dance today and go to a friend's house warming party. Her home is finally finished one year after Hurricane Harvey.

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Hi everyone.

Just an update - my dad had another scan today after 4 treatments of Carboplatin + Alimta, but it appears that everything grew. He will now be going back on Keytruda with a combo of Docetaxel. Does anyone have any experience with this combo? Or going back to Keytruda after it stopped being effective in the past?

Thanks,

Marcie

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Uugghh, I'm so sorry to hear this Marcie.  I'm not familiar with the combo that is being suggested, but have heard of some going back on Keytruda and adding something else along with it.  I'm unaware of the results.  My mom had Chemo (Alimta + Carbo) + Keytruda during the first 6 infusions.  At the time, the triplet had just been approved a few months earlier and studies had shown that patients had a better response overall.  If I recall correctly, your dad had Keytruda only at first???  And since the cancer did not respond to Carbo/Alimta they are throwing another kind of chemo at it along with the immunotherapy.  Perhaps this is the combination that works for him.  How is he feeling otherwise?

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Yes, initially he had just Keytruda. Then after about 10 months he had a scan with mixed results, then the following scan showed progression. I'm not really finding much info on Keytruda and Docetaxel online - my mom thought it was a trial? At his next appointment they'll also be taking blood and sending that off to see if he has any other mutations. So fingers crossed... here's hoping this combo shows some improvement.

Best,

Marcie

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I posted a question about my dad's upcoming treatment here: https://www.inspire.com/groups/american-lung-association-lung-cancer-survivors/discussion/third-line-treatment-anyone-ever-go-back-to-immunotherapy-1a66pp/?page=last&origin=freshen#replies

The responses have me sort of puzzled. Everyone said it was odd to see Alimta used for squamous cell NSCLC. After a night of Googling, it does appear that it is pretty rare and the Alimta website even specifically states it is not for squamous cell. I wonder why? Now I'm paranoid they somehow forgot he has squamous cell and were treating him as if he has adeno. I asked him to call and ask for clarification on why, but he said he'd wait for his next appointment on 9/19.

Also, after researching a lot, it appears that the study linked (http://www.ascopost.com/issues/july-10-2018/keynote-407-pembrolizumab-plus-chemotherapy-in-squamous-nsclc/) appears a lot more promising for squamous cell than the Keytruda + Docetaxel they are going to start him on. 

I suppose there's not much I can do if he's not willing to call before his appointment, but here's hoping we get some explanations on the 19th.

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Marcie, I didn't carefully read every post in this thread, but your post from May 3, 2017 said:

Quote

Just to update on this.

My father had his liver biopsy and even though the spot had a high SUV number, it did not turn out to be cancer.

He had a lung biopsy and has NSCLC adenocarcinoma stage 2B lung cancer. He has one 5.5cm mass in his left lung and one nearby lymph node. We are now waiting to schedule surgery (they will remove both with surgery) and then find out what the chemo plan will be like.

Did they change their minds about what kind of cancer he has?  I didn't see anywhere that you mentioned he has squamous cell....

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Hi LexieCat! Yes, that was what I posted but later my dad chimed in (ffpacker) and said I had that part wrong - and I saw his paperwork and he's definitely listed as having squamous cell!

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Ah, OK.  Yeah, it's pretty confusing to sort out the different types when you are just getting a handle on the shock of the diagnosis.

I think you definitely should ask the question.  Mistakes are not unheard of, and if there's a specific reason he's getting that treatment that appears to be unconventional, then you should know what it is.  And don't forget, second opinions can be had at any point in the process.  

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Just an update: waiting to hear back from his doctor.

From everything I've read, Alimta is basically never used for squamous cell, so I'm scared there was an error. :(

On top of that, my mom went through his paperwork and all of the earlier paperwork is marked Squamous Cell, but his most recent document from his doctor for his insurance is marked as "Adenocarcinoma", so that is a little alarming.

My mom left a message yesterday, but I don't think his doctor is usually in until Wednesday. So here's hoping we hear back early tomorrow or we'll call again.

I'm not sure what steps we should/could take if they were wrong? Getting a second opinion or going elsewhere for treatment isn't likely, because  my dad is now retired and no longer has private insurance. I'm not sure his VA benefits would cover anything but the VA hospital.

Thanks so much if anyone has any input,

Marcie

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I think step one is to find out whether there is an explanation for the different diagnoses.  I think I'd ask for the pathology samples to be re-examined.  

If you aren't satisfied, find out whether he can see another oncologist.  There should be a patient advocate who could help.  There's also something called the Veteran's Choice Program.  https://www.va.gov/COMMUNITYCARE/programs/veterans/VCP/index.asp I read about people's being advised to keep trying to schedule an appointment till you find one that cannot be scheduled within 30 days, to make them eligible.  I can't vouch for that, but there should be an advocate or ombudsman at the hospital where he's being treated.

The two diagnoses are different enough that one should not be mistaken for another.  

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Finally an update.

Even though they left messages, no one from the VA ever got back to them. They went in for his appointment today, and yes, they did mix up his diagnosis and start treating him for adeno instead of squamous cell. :( 

They're still going to start him today on a combo of Keytruda and Docetaxel. Here's hoping that has some success... 

This treatment looks pretty promising. I asked my parents to bring it up, but they didn't. Maybe next week. http://www.ascopost.com/issues/july-10-2018/keynote-407-pembrolizumab-plus-chemotherapy-in-squamous-nsclc/

There's only so much I can do if my parents aren't willing to be more aggressive in their questions/suggestions. :(

Best,

Marcie

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Have you asked your dad whether he would give you permission to talk with his doctors directly?  You can find forms online that will permit you to receive information from his medical professionals.  If you have that in place and on file, it might make things much simpler.

I'm so glad you noticed the mistake and brought it up.  

I hope the change in treatment is beneficial--it certainly can't be any worse than getting treated for the wrong disease!

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Hi Marcie!

Your poor folks are probably just overwhelmed! Those first few visits with the oncologist are so nerve wracking....they maybe just forgot to ask. I did that myself several times until I finally had to write stuff down and take the paper in with me. LOL Maybe you could write the treatment down and ask them to just hand it to the doc...."What about using Carboplatin and Abraxane chemo instead of the Docetaxel?" Could be that your parents just don't know what to say!

Or as Lexie suggested, you can have him add you to the list of people they can discuss his treatment with and go at it directly.

 

 

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Update: They did finally ask about the Keynote 407 treatment, but the doctor told them he'd only be eligible for it as a first line treatment. Now that he's on his third, it wouldn't be approved. :(

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Marcie,

Send your mom and dad this link.

I've found the VA patient advocate in the Dallas VA hospital to be a really good and helpful resource.  Mine breaks through the bureaucratic log jam and gets things done.

I hope things get straightened out quickly.

Stay the course.

Tom

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