Scans Tomorrow

[Judy M.]

Hi Everyone

Going for Bone and C. T. scans again tomorrow. They want to see how the Opdivo is working. If not for the pain in my right hip would have enjoyed this time on Opdivo. Easiest treatment I've had. But, in spite of the radiation, which only lowered the pain for a while, pain in left hip has gotten progressively worse. Could keep it tolerable with Tylenol for a while. Now having to used both Tylenol and Gabapentin. My Radiology Oncologist said when he treated it that he'd kill that tumor and that he'd never had a do over. Thinking either he's lost that brag or something else is  going on. Have all the symptoms for trochanter bursitis and have read it's very difficult to tell the difference between that and a hip met without an MRI.  Kept talking to my Oncologist about it until he finally scheduled and MRI on the 17th. Thinking if it's the same met maybe ablation or ultrasound therapy. Anyone have any experiences with those?

Judy M. 

[Susan Cornett]

Fingers crossed for your scans tomorrow.  And, if we have to wish for the lesser of two evils, we'll wish for a bursitis diagnosis.  

 

[Judy M.]

Thanks Susan. Bursitis would be great given the alternative. 

Judy M

[Mally]

Good luck with your scans tomorrow Judy and hoping its just bursitis in your hip

[Tom Galli]

Judy,

I am hoping an praying for NED!

Stay the course.

Tom

[Cheryncp123]

Hope those scans were all good. I go for my next scan in May and it has been 5 months since being on Alecensa so am anxious to see if the drug is still working as great as it was on my last scan.

[Mally]

The dreaded  scans we all fear but want them anyway to know we are doing well ...Judys up first and im having scans on april 26th and  get my results on  2nd may and your in may too so i hope we all have good news to share so until then positive thoughts .

[Judy M.]

I hope so too Mally. It would be so nice if the Opdivo worked. Such an easy treatment. 

Judy M. 

[Judy M.]

Thanks for the prayers Tom. I certainly need them. Scans all done finally. It was a long day. Still have MRI on the 17th. Now we wait. But my own scanziety has actually gotten better with time. 

Judy  M. 

[Judy M.]

Hi Survivors

I'm a Survivor fan and couldn't resist starting this update with those words. I really wanted to say, "Survivors ready?" Think I'll start having some fun with the catch phrases from that program. Well, I didn't win the immunity idol this episode but I haven't  been voted off yet. Have not seen Oncologist, but the Radiology reports for my scans have been posted on my hospital app. They are unchanged from 4 months ago. I'm taking that to mean my disease is stable, so the Opdivo is probably working. Says the met in my hip is still there, but not new mets and no increase in size. Has definitely increased in pain and swelling. Hope the MRI reveals what's going on there and Oncologist has a solution to offer. All in all I'm happy with these results, and hope they encourage you Mally. 

Judy M

[Mally]

Thats great news Judy and hopefully your next scan shows a decrease if not NED..

[Tom Galli]

Judy,

No progression, no increase in size -- I'm taking that for a good report.

What about radiation for your hip?

Stay the course.

Tom

[Judy M.]

Tom, 

Had 16 standard radiation treatments for my hip. The pain improved a bit for a short time and has now come back worse than ever. More pain and more swelling. Obviously, it failed. Both bone and C. T. scan show that tumor in my hip as unchanged. Not any larger, but still there. I wonder if there's also something else going on. That's why I kept asking for an MRI on that hip, which I'm finally going to get next Tuesday. I'm thinking ablation now, since radiation has failed. Haven't heard from anyone here who has had that. Ask about it in another post. 

Judy M

[Roz]

Good luck with the MRI! Sending positive thoughts your way!!!

 

 

[Judy M.]

Thanks Roz!!! 

[Judy M.]

Saw Oncologist yesterday. He agrees that my disease is stable and the Opdivo is probably working. I have an ablation on the met in my hip scheduled for May 10th. Doctor is also going to put some cement in my hip bone to strengthen it. My Medical Oncologist for some reason was on his pessimistic streak again yesterday. He told me he didn't expect the Opdivo to do much because my PD-L1 is only 1%. That comment in spite of the good scans. And I've read that for reasons they don't yet understand some patients will respond to Immunotherapy in spite of low PD-L1. Then he was discouraging about the ablation saying he didn't think the doctor would do it because my bone met isn't in the right place. But he finally agreed to let the Radiologist look at my scans. Lo and behold he's not only going to do ablation but stick some cement in to strengthen my bone while he's at it. He didn't say a word about the MRI results and I haven't gotten them yet. Have had another illness the past week and with limping, low oxygen, and having to drive myself the 80 miles round trip I was just too tired. But I'll get it later. Didn't hear anything from anyone when I threw that ablation question out there. From what I've read that may be fairly new also and I think it's used for breast cancer patients more often than lung cancer. The met in my hip hasn't been biopsied, but will be before the ablation. I suppose it could be a breast cancer met since I had that also. And that would be a better case scenario. Whatever it turns out to be I'm going to keep researching this and fighting tooth and nail no matter what my Oncologist says. 

Judy M. 

[Tom Galli]

Judy,

Wow - what a journey!  I don't have any personal experience about ablations and I'd venture you are reading the same "Dr. Google" that I've searched-up.

Driving alone on an 80-mile round trip for treatment while ill is no picnic, and I hope you've recovered by now.  I imagine our Hope Summit will have lots of information on immunotherapy and will post comments I hear at the Summit about treatment effectiveness with low PD-L1 expression.  You are right; I've read some do in fact have positive responses despite the expression of low PD-L1.  I do hope you continue to benefit from Opdivo.

Stay the course.

Tom

[Judy M.]

Thank you, Tom. I'll look forward to hearing what you have to share from the conference. Thank you for the confirmation about the PD-L1 expression. And, yes, my journey has been different. Will post on the ablation and I think they called it cementology procedure. Maybe it will help someone down the line. 

Judy M

[Mally]

Wow who needs a dr downer on this lung cancer journey .....we need some hope to continue to enjoy our lives and with your scans showing Stable thats a great reason to feel hopeful so keep your positive attitude up Judy...

[Judy M.]

Thank you, Mally. I intend to. I just accept that's how he is. I've told him I think he tends to be negative. My Radiology Oncologist on the other hand is very positive. So, I have both extremes. Saying a prayer again that your scans will be good. 

Judy M. 

 

[Roz]

Stable scans!! That's fabulous news! So, I agree with what everyone has said-stay positive!!

 

Ro

[Mally]

Thanks Judy and its scan day tomorrow and results on the 2nd may when i see my oncologist....did you get scanned for the chest.. stomach and pelvis with contrast ?

[Judy M.]

Mally

Yes, scanned chest, stomach and pelvis with contrast. Also, because of my own particular circumstances, had bone scan and MRI of hip with contrast. So, now we play the waiting game again. Please, let us know as soon as you get results. 

Judy M