Possible spine mets - now what??

[Lisam81]

My dad is still in the hospital in PCU after having his first ever seizure out of nowhere. The spine and brain MRI yesterday confirmed the brain is still abnormal but stable though they don’t know what it means or if it’s cancer (stage IV, NSCLC, adeno, one tumor in right lung, both adrenals tumors, small stable lytic lesion on rib since diagnosis 2/28/18). His oncologist at Moffitt says it’s NOT brain mets based on the report. His radiation oncologist said he didn’t think it was brain mets either but wasn’t sure as he didn’t know what it was or meant. However, the spine MRI showed an area that lit up in the spinal cord (my dad is in severe low back pain with shooting pains down his legs). His lumbar puncture today was negative for infection and paraneoplastic syndrome is not confirmed or denied yet. They don’t think it’s a viral infection but not totally confirmed. They are leaning towards cancer in a small part of the spine. But results won’t be back until Monday or so. No one knows what the brain means. I don’t know what to do from here. Obviously, radiation will be next for spine mets if it is. He has been OFF all chemo and treatments since 9/7. His oncologist failed him on the clinical trial on 9/27 so he didn’t get chemo that day, making no treatment since 9/7 except starting the IMRT for the chest tumor on his heart. He has 2 more treatments for that. His oncologist wanted to see him 2 weeks after his last radiation appt but now if he starts radiation to spine, does this mean my dad just continues to sit with NO chemo or Keytruda treatment!?? I tried to get in touch with his oncologist at Moffitt today. No return phone call on it. The last he said to me was if it was spine mets it’s the radiation oncologists responsibility and didn’t say he wanted to see my dad to start any treatments internally too. I am so overwhelmed and I don’t know what happens from here. He’s still in hospital but they may release him this weekend but aren’t sure. I just know it is getting time critical now. Is spine mets always a bad outcome?? The next treatment was supposedly going to be Abraxane, Carbo + Keytruda. I’m questioning should he be in a clinical trial for second line or is that combination a good one for him now that he might have spine mets? He had a thoracic/abdominal CT at Moffitt on 9/27 with no mets seen.

[ThePurplePlace]

Lisa,

SO sorry that your Dad is facing more problems and hope you get some answers soon. NOTE: I did have a brain met at my dx and was immediately put on Anti seizure meds and then had Cyberknife treatment. Knowing they suspect some type of brain issue, did they put your Dad on any anti seizure med, or will they now? They did keep me seizure free and I stayed on them for many months, until I had clear Brain MRI's.

I also did not start any Chemo (for my lung cancer) until AFTER I finished the Cyberknife treatment and it was about two months after my DX before I had my first "chemo". We did not have Immunotherapy (at the time it was still in trial and only as a second line treatment). Eventually after having progression while on Alimta Maintenance, I did move on to Opdivo with excellent results. I have Stage IV NSCLC Adeno / KRAS+

I wouldn't even venture a guess as to what the best possible treatment would be for your Dad, but IF this was me and I were starting ALL over with all that we have today, I would do the Cyberknife first again and then one of the the new Chemo/Immunotherapy "Triplets" -- (Carbo, Alimta, Keytruda) etc. These seem to be showing very good results and are now the most recommended first line treatment for many Lung Cancer Patients.

I also think that they will likely want to do palliative radiation to his spine, if they do indeed find these are mets and that is also what I would want especially if he's already having a lot of pain. I'm guessing they may need to wait for him to finish the IMRT before they start the new treatment, but only his doctors can tell you for sure.

Wishing you both the very best -- it's a shame that his doctors are not being more communicative with you.

Lisa

[Lisam81 in reply to ThePurplePlace]

Hi Lisa,

Thank you! Yes, they started him on Keppra anti-seizure medication when he was in the ER Tuesday after the seizure. I do not know yet if this will be continued once he leaves the hospital. As far as I understand, he can’t have radiation on the brain because no one knows that it is cancer. His oncologist says no, radiation oncologist says he has never seen it before and doesn’t know, so I don’t know how anyone will treat something when they don’t know what it is.

He was on a clinical trial of Carbo/Alimta and Pirfenidone pills from diagnosis until end of June, when he went on Alimta maintenance and Pirfenidone and was stable until 9/27 when they said no mets but slight tumor enlargement. Stopped chemo. Went for IMRT and has 2 left. He missed Tuesday’s radiation due to seizure and ER. Luckily where he goes for radiation is part of the Orlando health hospital system where he’s in PCU so he is taken daily for radiation in the next building. He started radiation and all this happened literally so quickly in less than 2 weeks. He was okay one minute and then bam, it was like instant neurological issues and ataxia and low back pain. So since he failed Alimta now, second line has been suggested Abraxane, Carbo and Keytruda. I was disappointed as we were going to Moffitt for the clinical trials but I suppose this is the best second line. Not sure if it’s still the best if he has spine mets and whatever it is with the brain. His radiation oncologist is the only one following my dad. He has been wonderful and been there for my dad daily in the hospital. His oncologist at Moffitt has only spoke to us on the phone one time since 3/30 and that was this Tuesday. He’s excellent in his field, but the communication and lack of feeling like they’re watching over you isn’t there. I guess maybe it’s harder when we live in Orlando and Moffitt is in Tampa. He’s declining neurologically quickly and in such severe pain that meds isn’t helping. Something needs to happen quickly.

[ThePurplePlace in reply to Lisam81]

...Keppra was the med I was on, excellent results no side effects

Sending healing thoughts...

[Lisam81 in reply to ThePurplePlace]

Thank you! That eases my mind about Keppra as I didn’t know much about it.

[Ncpoet]

Lisa, I am overwhelmed by all your dad is dealing with. Your head must be spinning with all the decisions about best course of treatment. I wish I had answers for you. I am sure someone here can offer some suggestions from their experiences. All I have right now are prayers of love,hope, and healing.

Judy

[Lisam81 in reply to Ncpoet]

Thank you, Judy! It’s been a sudden whirlwind. He’s still in hospital and on IV penicillin, acyclovir and Keppra until they figure out if viral infection or spine mets or what. His brain still shows swelling but no one knows what the abnormal brain mri means and that’s frustrating. I am going to try to gather up all hospital records and imaging cds when he is released and drive them myself to Tampa as I feel that’s the quickest way to make sure his oncologist reviews them stat.

[Ncpoet in reply to Lisam81]

That sounds like a very good plan! A physical presence demands more attention from a doctor than a phone call. He will have to look you in the eye when he talks to you.

You go girl!

Judy

[ThePurplePlace in reply to Lisam81]

Lisa

Is he also in steroids for the brain edema? They put me on Dexamethasone right away. The swelling caused my neuro changes, losd of speech, loss of feeling in my right arm and hand. The Dex worked very well for me. I did have a brain met, but it was all very sudden... two days of vertigo like symptoms...then the urgent head CT. This is how I learned I had LC, total shock.

Hoping you learn more soon. Your Dad is so lucky to have you.

Prayers

Lisa

[Lisam81 in reply to ThePurplePlace]

Hi Lisa,

I’m still here at the hospital and I just asked the nurse some questions again. His radiation oncologist had started him on steroids 2 days before his seizure and hospitalization. Before that he was never on steroids. The idea was try 2 weeks and see if it helped his swelling. He doesn’t want long term steroids as second line is immunotherapy, we hope!! So they stopped the 2 week steroids in the ER until they can find out if he has an infection as his abnormal brain mri did not rule out infection. Just now the nurse said the neurologist may stop the Keppra and start him on steroids. I’m not liking this as I don’t want him on long term steroids, especially with the SVC syndrome as studies have shown those who took steroids long term for SVC had the worst outcomes in the end. Now if they’re talking short term steroids, that’s okay. But with his sodium low taking him off Keppra scares me. They have him on salt tabs now and Gatorade to see. The infectious disease doctor said the CSF fluid was abnormal in that even though it was clear in color the white blood cell count was higher. He said they still don’t know what this means in relation to the brain mri. No tumors seen on brain mri etc but fluid and slight swelling (FLAIR). Malignant cell test of lumbar puncture has not come back yet. So he is on heparin, acyclovir and penicillin still right now. And pain meds to help the low back pain. The uncertainty is so scary because we don’t know what’s going on so can’t even treat anything!

[ThePurplePlace in reply to Lisam81]

Mine was severe, so they it were necessary. I stopped them prior to starting immunotherapy....but was on the Keppra for a long time....

Again... just a thought...

Your Dad has far more things going on than I did....but it was all very overwhelming and I didn't have a "daughter" like you to be my advocate...I'm normally doing that for my family....

I'm just trying to offer support...and ideas.... hoping for the best...

[Lisam81 in reply to ThePurplePlace]

I’m all for short term, but to stop the Keppra and do steroids indefinitely makes no sense to me? And why stop Keppra anyways right now and start steroids? I’m not understanding the decision I guess.

[ThePurplePlace in reply to Lisam81]

That would concern me too, especially since he has had a seizure? I'm sorry.... wish they'd explain it better...