› Forums › General Melanoma Community › 2nd opinion of 11/3 PET scan – I just don’t get it
- This topic has 63 replies, 11 voices, and was last updated 9 years, 4 months ago by
arthurjedi007.
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- January 5, 2015 at 8:38 pm
I just don't get it. I'm not sure what I'm asking. I probably shouldn't post this and bother everybody. It is just very upsetting to me.
Back in November once my local doc got them to compare with the correct scan (ie: 11/3 with 8/13) the report basically said mild growth. No new stuff. And listed the left scapula tumor had grown.
My Mayo doc wanted a copy of the scan and I just got their report which seems more grim. For example what they say has improved is what was radiated. The spot in my head and my lower thoracic and upper lumbar. Sooo has pd1 quit working for me? I've only been on it since 5/21. I just don't get it. I'm especially concerned by the midthoracic spine because that was listed as shrinking in the 8/13 scan but here it seems to be increasing. It is the one that almost paralyzed me last year and has already been radiated twice and surgery they can't do on it cause if they shut off the artery to it would also shut off the spinal cord thus paralyzed. So if that gets bad again then it is the end of the ball game for me.
I know I don't have much strength or energy. I also have to take 2 pain pills a day just to get by mainly due to the pain in the shoulder and collar. But if I don't do much I feel fairly well. I can go to the buffet ok and due to my walking issue with the hip and leg tumors I can ride the cart and the grocery store fine but not walk it anymore. But I do tire out very quickly. I used to be able to walk 2 miles a day but with the leg and hip issues I only walk about 4 five minute walks a day.
I thought the keytruda was working great but now with this report I dunno what to think. I was planning to stay on pd1 for quite a long time and get my shoulder radiated soon as the next step. Now I just dunno. I'm totally dumbfounded. If pd1 is no longer working the best option I have that is geographically possible from Saint Louis is travelling to Chicago and hope and pray they let me into the pd1/anti-lag-3 even with my limp. But without radiating this shoulder first such a 10 x 9 cm tumor is just too big for my immune system to handle. Also my ldh has been steadily increasing ever since last March and is up to 722.
Or maybe I'm jumping to conclusions and the pd1 is doing good like the Saint Louis report said. After all this Mayo report doesn't list anywhere near the 30 or so tumors I have. I just don't get it how there could be such a difference in interpretting the same scan. I know last year Mayo interpretted a lung issue as tumors but it was really inflamation so I'm not really concerned about that since I have no breathing issues at all even when I do my deep breathing exercises. From what I've read with immunotherapy it can be tricky to interpret the lungs.
Sorry to bother everyone with this. I'm just totally dumbfounded. I see my Saint Louis doc tomorrow. I know he wanted me into NIH back in November when they mistakenly compared the 11/3 scan with the 4/23 scan but my hip and leg went out so they wouldn't let me in. Since then he's been fairly quiet on plans except I want to radiate my shoulder and he wants to do some kind of tumor sample first but that's already been an almost 3 week delay so far. So I dunno. I just don't get it. I think we are probably due for another scan in the next 3 weeks so I dunno.
Artie
Here's the Mayo report.
EXAM: Interp of OS NM PET Scan dated 11/3/2014.COMPARISON: Mayo Clinic PET/CT 8/13/2014CLINICAL INDICATION: Restaging metastatic melanoma, subsequenttreatment strategy.IMPRESSION: Overall probable progression of metastatic diseaseFINDINGS: Interval progression of some of the bony metastatic diseasewith new or increasingly FDG avid lesions located in the left ischium,right humerus, midthoracic spine and left sacrum. Additional FDG avidlesions are present in the mid right femur and proximal left tibia.Other pre-existing metastatic bone lesions have improved, for instancethe right posterior occipital bone and several vertebra in the lowerthoracic and upper lumbar spine.The large bone and soft tissue metastasis in and around the leftscapula has increased in size and FDG uptake, SUV Max 15.0, previously11.8. There is also been an increase in the size and extent of FDGavid lymphadenopathy in the left neck and left supraclavicular fossa.New pleural metastases in the posterior left lung and increasing FDGavid soft tissue nodule adjacent to the posterior aspect of the upperpole of the left kidney.No abnormal uptake in the liver or cerebral cortex. Incidental CTfindings are generally unchanged.
- Replies
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- January 6, 2015 at 12:18 am
Hi Artie,
I am no expert on any of this, but I wanted you to know that I am thinking of you and hoping tomorrow's appointment sheds some good light on the reports. One thing I do know is that my own scan reports vary wildly in detail. Some note even the slightest change and others seem to ignore anything but the most obvious. In my four year melanoma journey from stage IIIa to stage IV, I have had lots and lots of scans!
I am holding you in the light of peace and hope,
Lear
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- January 6, 2015 at 1:16 am
Thank you Lear.
Artie
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- January 6, 2015 at 1:16 am
Thank you Lear.
Artie
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- January 6, 2015 at 1:16 am
Thank you Lear.
Artie
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- January 6, 2015 at 2:02 am
Hi Artie!
I hope tomorrow goes well for you and that your concerns can be addressed and clearly explained. My scans also vary in detail…especially since I've had them done in various hospitals. I'm seeing some consistency now that I'm being treated at Georgetown.
I'm praying that Keytruda is doing it's job for you and that you will start to feel better.
Take care, Artie!
Terrie
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- January 6, 2015 at 2:02 am
Hi Artie!
I hope tomorrow goes well for you and that your concerns can be addressed and clearly explained. My scans also vary in detail…especially since I've had them done in various hospitals. I'm seeing some consistency now that I'm being treated at Georgetown.
I'm praying that Keytruda is doing it's job for you and that you will start to feel better.
Take care, Artie!
Terrie
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- January 6, 2015 at 2:02 am
Hi Artie!
I hope tomorrow goes well for you and that your concerns can be addressed and clearly explained. My scans also vary in detail…especially since I've had them done in various hospitals. I'm seeing some consistency now that I'm being treated at Georgetown.
I'm praying that Keytruda is doing it's job for you and that you will start to feel better.
Take care, Artie!
Terrie
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- January 6, 2015 at 3:39 pm
Thanks Terrie
Artie
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- January 6, 2015 at 3:39 pm
Thanks Terrie
Artie
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- January 6, 2015 at 3:39 pm
Thanks Terrie
Artie
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- January 6, 2015 at 12:18 am
Hi Artie,
I am no expert on any of this, but I wanted you to know that I am thinking of you and hoping tomorrow's appointment sheds some good light on the reports. One thing I do know is that my own scan reports vary wildly in detail. Some note even the slightest change and others seem to ignore anything but the most obvious. In my four year melanoma journey from stage IIIa to stage IV, I have had lots and lots of scans!
I am holding you in the light of peace and hope,
Lear
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- January 6, 2015 at 12:18 am
Hi Artie,
I am no expert on any of this, but I wanted you to know that I am thinking of you and hoping tomorrow's appointment sheds some good light on the reports. One thing I do know is that my own scan reports vary wildly in detail. Some note even the slightest change and others seem to ignore anything but the most obvious. In my four year melanoma journey from stage IIIa to stage IV, I have had lots and lots of scans!
I am holding you in the light of peace and hope,
Lear
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- January 6, 2015 at 12:46 am
So sorry you're having to deal with all this confusion and mixed messages. Have any of your doctors ever actually walked you through your scans? I have one doctor that puts the CDs in his computer and walks me through my mets comparing them to previous scans right before my eyes (he doesn't solely rely on the written report). I love him for this. I also have my own CD copies of all of my scans (I request them every time) so I can look at them myself keeping in mind that my position in the machine might be slightly different each time, but I like being able to see them for myself and compare them myself and make up my own mind as to the changes rather than just relying on a written report. Since your written reports are different from each other, it might be worth taking a look yourself to see which report you think is more on the mark.
I hope you are also simulatenously working on your "next step" plan. You've given that great advice to many of us. Do the research and the legwork for your next Plan B while you continue your discussions with your doctors and see how your next scans go. Never give up, Artie. I'm currently reading the book "Radical Remission" which has stories of folks that exhausted conventional treatments, were sent into hospice and still somehow fully recovered. Anything is possible.
Best of health to you!
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- January 6, 2015 at 1:28 am
Thank you Maggie. It makes me feel good that maybe I've helped someone in my own little way. I do have my pet scan copies. They are hard for me to read but yeah I think it looked pretty good. The big issue being my left shoulder and collar. Still 3 spots in my spine but they look the same as August to me plus way better than the bunch that were there in April. Bigger stuff in my hips. A few other dots here and there but not much of interest. So yeah I just don't get it.
i did plan for the nih trial but a person that knows a lot convinced me in my weakened condition I probably would not make it. Especially the part where they drop your white blood cells to zero. Then my walking went bad so that and my other trials went with it. But since they radiated my hip and leg I might be good enough. I was thinking if things are bad I would try for the pd1 anti lag in Chicago. But if things are ok then radiate the shoulder and if need be the keytruda Il12 that may be coming up in SanFrancisco.
Sounds like I need to read that book too. I'm on my third time reading Jesus today so I think I'll order that book. Thanks.
Artie
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- January 6, 2015 at 1:28 am
Thank you Maggie. It makes me feel good that maybe I've helped someone in my own little way. I do have my pet scan copies. They are hard for me to read but yeah I think it looked pretty good. The big issue being my left shoulder and collar. Still 3 spots in my spine but they look the same as August to me plus way better than the bunch that were there in April. Bigger stuff in my hips. A few other dots here and there but not much of interest. So yeah I just don't get it.
i did plan for the nih trial but a person that knows a lot convinced me in my weakened condition I probably would not make it. Especially the part where they drop your white blood cells to zero. Then my walking went bad so that and my other trials went with it. But since they radiated my hip and leg I might be good enough. I was thinking if things are bad I would try for the pd1 anti lag in Chicago. But if things are ok then radiate the shoulder and if need be the keytruda Il12 that may be coming up in SanFrancisco.
Sounds like I need to read that book too. I'm on my third time reading Jesus today so I think I'll order that book. Thanks.
Artie
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- January 6, 2015 at 1:28 am
Thank you Maggie. It makes me feel good that maybe I've helped someone in my own little way. I do have my pet scan copies. They are hard for me to read but yeah I think it looked pretty good. The big issue being my left shoulder and collar. Still 3 spots in my spine but they look the same as August to me plus way better than the bunch that were there in April. Bigger stuff in my hips. A few other dots here and there but not much of interest. So yeah I just don't get it.
i did plan for the nih trial but a person that knows a lot convinced me in my weakened condition I probably would not make it. Especially the part where they drop your white blood cells to zero. Then my walking went bad so that and my other trials went with it. But since they radiated my hip and leg I might be good enough. I was thinking if things are bad I would try for the pd1 anti lag in Chicago. But if things are ok then radiate the shoulder and if need be the keytruda Il12 that may be coming up in SanFrancisco.
Sounds like I need to read that book too. I'm on my third time reading Jesus today so I think I'll order that book. Thanks.
Artie
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- January 6, 2015 at 12:46 am
So sorry you're having to deal with all this confusion and mixed messages. Have any of your doctors ever actually walked you through your scans? I have one doctor that puts the CDs in his computer and walks me through my mets comparing them to previous scans right before my eyes (he doesn't solely rely on the written report). I love him for this. I also have my own CD copies of all of my scans (I request them every time) so I can look at them myself keeping in mind that my position in the machine might be slightly different each time, but I like being able to see them for myself and compare them myself and make up my own mind as to the changes rather than just relying on a written report. Since your written reports are different from each other, it might be worth taking a look yourself to see which report you think is more on the mark.
I hope you are also simulatenously working on your "next step" plan. You've given that great advice to many of us. Do the research and the legwork for your next Plan B while you continue your discussions with your doctors and see how your next scans go. Never give up, Artie. I'm currently reading the book "Radical Remission" which has stories of folks that exhausted conventional treatments, were sent into hospice and still somehow fully recovered. Anything is possible.
Best of health to you!
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- January 6, 2015 at 12:46 am
So sorry you're having to deal with all this confusion and mixed messages. Have any of your doctors ever actually walked you through your scans? I have one doctor that puts the CDs in his computer and walks me through my mets comparing them to previous scans right before my eyes (he doesn't solely rely on the written report). I love him for this. I also have my own CD copies of all of my scans (I request them every time) so I can look at them myself keeping in mind that my position in the machine might be slightly different each time, but I like being able to see them for myself and compare them myself and make up my own mind as to the changes rather than just relying on a written report. Since your written reports are different from each other, it might be worth taking a look yourself to see which report you think is more on the mark.
I hope you are also simulatenously working on your "next step" plan. You've given that great advice to many of us. Do the research and the legwork for your next Plan B while you continue your discussions with your doctors and see how your next scans go. Never give up, Artie. I'm currently reading the book "Radical Remission" which has stories of folks that exhausted conventional treatments, were sent into hospice and still somehow fully recovered. Anything is possible.
Best of health to you!
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- January 6, 2015 at 1:37 am
Oh, Artie! So sorry for all the confusion and heartache! Radiologists are just people….theoretically trained to read such films consistently and accurately…but fallible people none the less. Now…I don't mean that one radiologist was wrong vs the report from another….but perhaps, inconsistent. I would get one of my docs to sit down and look at the pictures…not the reports!….with me and tell me what they see…play by play. Perhaps you can do this tomorrow? Hang in there. Don't forget that with immunotherapies like the anti-PD1 products, you can see an increase in lesion number and size before an ultimate decrease! Much love – c
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- January 6, 2015 at 1:37 am
Oh, Artie! So sorry for all the confusion and heartache! Radiologists are just people….theoretically trained to read such films consistently and accurately…but fallible people none the less. Now…I don't mean that one radiologist was wrong vs the report from another….but perhaps, inconsistent. I would get one of my docs to sit down and look at the pictures…not the reports!….with me and tell me what they see…play by play. Perhaps you can do this tomorrow? Hang in there. Don't forget that with immunotherapies like the anti-PD1 products, you can see an increase in lesion number and size before an ultimate decrease! Much love – c
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- January 6, 2015 at 1:37 am
Oh, Artie! So sorry for all the confusion and heartache! Radiologists are just people….theoretically trained to read such films consistently and accurately…but fallible people none the less. Now…I don't mean that one radiologist was wrong vs the report from another….but perhaps, inconsistent. I would get one of my docs to sit down and look at the pictures…not the reports!….with me and tell me what they see…play by play. Perhaps you can do this tomorrow? Hang in there. Don't forget that with immunotherapies like the anti-PD1 products, you can see an increase in lesion number and size before an ultimate decrease! Much love – c
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- January 6, 2015 at 4:02 am
I'm sorry you are having to deal with all this confusion Art. I really like Celeste's idea of having your doctor sit down with you infront of the pictures and explaining them to you. Only then can you really make an informed decision.
I usually have a different radiologist interpret my scans each time and there really does seem to be an art as much as a science in reading those things. Sometimes they will say tumors have shrunk or remained stable and give a measurement but when I look at the measurement from the previous scan it conflicts with their shrunk or stable assessment. I put the most stock in my oncologist's assessment because I know he's using the same ruler and same set of eyes for every scan.
I wish you well this week.
Brian
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- January 6, 2015 at 3:42 pm
Thanks Brian. My Saint Louis doc has tried going through the scan but he gets lost easy so I've never got very far. My Mayo doc in the beginning when I only had a few tumors he did but the last time he didn't try either.
Artie
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- January 6, 2015 at 3:42 pm
Thanks Brian. My Saint Louis doc has tried going through the scan but he gets lost easy so I've never got very far. My Mayo doc in the beginning when I only had a few tumors he did but the last time he didn't try either.
Artie
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- January 6, 2015 at 3:42 pm
Thanks Brian. My Saint Louis doc has tried going through the scan but he gets lost easy so I've never got very far. My Mayo doc in the beginning when I only had a few tumors he did but the last time he didn't try either.
Artie
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- January 6, 2015 at 4:02 am
I'm sorry you are having to deal with all this confusion Art. I really like Celeste's idea of having your doctor sit down with you infront of the pictures and explaining them to you. Only then can you really make an informed decision.
I usually have a different radiologist interpret my scans each time and there really does seem to be an art as much as a science in reading those things. Sometimes they will say tumors have shrunk or remained stable and give a measurement but when I look at the measurement from the previous scan it conflicts with their shrunk or stable assessment. I put the most stock in my oncologist's assessment because I know he's using the same ruler and same set of eyes for every scan.
I wish you well this week.
Brian
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- January 6, 2015 at 4:02 am
I'm sorry you are having to deal with all this confusion Art. I really like Celeste's idea of having your doctor sit down with you infront of the pictures and explaining them to you. Only then can you really make an informed decision.
I usually have a different radiologist interpret my scans each time and there really does seem to be an art as much as a science in reading those things. Sometimes they will say tumors have shrunk or remained stable and give a measurement but when I look at the measurement from the previous scan it conflicts with their shrunk or stable assessment. I put the most stock in my oncologist's assessment because I know he's using the same ruler and same set of eyes for every scan.
I wish you well this week.
Brian
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- January 6, 2015 at 4:10 am
Hi Artie, Brian and Celeste have given you good advice! People make mistakes and I find that my Oncologist keep me confident in the system. He has caught a few problems along the way, so take the time and look at the scans with your Oncologist. I wish you all the best. Ed
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- January 6, 2015 at 4:10 am
Hi Artie, Brian and Celeste have given you good advice! People make mistakes and I find that my Oncologist keep me confident in the system. He has caught a few problems along the way, so take the time and look at the scans with your Oncologist. I wish you all the best. Ed
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- January 6, 2015 at 4:10 am
Hi Artie, Brian and Celeste have given you good advice! People make mistakes and I find that my Oncologist keep me confident in the system. He has caught a few problems along the way, so take the time and look at the scans with your Oncologist. I wish you all the best. Ed
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- January 6, 2015 at 9:10 am
Artie, I am so sorry you have to deal with all this stuff. I agree to all the above said, i have nothing to add. We also made bad experiences with scan reports and different doctors looking at the scans. I wish they could give you a clear picture and I cross my fingers that your doc can help you today. All the best, Jenny
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- January 6, 2015 at 9:10 am
Artie, I am so sorry you have to deal with all this stuff. I agree to all the above said, i have nothing to add. We also made bad experiences with scan reports and different doctors looking at the scans. I wish they could give you a clear picture and I cross my fingers that your doc can help you today. All the best, Jenny
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- January 6, 2015 at 12:44 pm
Artie,
I will be praying today for you to get good answers to the conflicting reports. When my husband was in the ipi/nivo trial in Pittsburg there were many times that the doctor there had different information that was not in the written report done in Maryland. We were lucky that it was usually better news than was in the report. I hope for the same for you Artie! I agree with Brian that it's extremely helpful for the doctor to sit down with you and show you the scans and explain the situation. I also agree with Celeste that sometimes things get bigger then shrink with immunotherapy. My husband had that happen with lymph nodes enlarging where they consider it disease progression, but now they have shrunk or are stable. Keep fighting!!! We are wishing you the best news possible today!!!
Maureen
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- January 6, 2015 at 12:44 pm
Artie,
I will be praying today for you to get good answers to the conflicting reports. When my husband was in the ipi/nivo trial in Pittsburg there were many times that the doctor there had different information that was not in the written report done in Maryland. We were lucky that it was usually better news than was in the report. I hope for the same for you Artie! I agree with Brian that it's extremely helpful for the doctor to sit down with you and show you the scans and explain the situation. I also agree with Celeste that sometimes things get bigger then shrink with immunotherapy. My husband had that happen with lymph nodes enlarging where they consider it disease progression, but now they have shrunk or are stable. Keep fighting!!! We are wishing you the best news possible today!!!
Maureen
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- January 6, 2015 at 3:45 pm
Thanks Maureen
Artie
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- January 6, 2015 at 3:45 pm
Thanks Maureen
Artie
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- January 6, 2015 at 3:45 pm
Thanks Maureen
Artie
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- January 6, 2015 at 12:44 pm
Artie,
I will be praying today for you to get good answers to the conflicting reports. When my husband was in the ipi/nivo trial in Pittsburg there were many times that the doctor there had different information that was not in the written report done in Maryland. We were lucky that it was usually better news than was in the report. I hope for the same for you Artie! I agree with Brian that it's extremely helpful for the doctor to sit down with you and show you the scans and explain the situation. I also agree with Celeste that sometimes things get bigger then shrink with immunotherapy. My husband had that happen with lymph nodes enlarging where they consider it disease progression, but now they have shrunk or are stable. Keep fighting!!! We are wishing you the best news possible today!!!
Maureen
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- January 6, 2015 at 3:44 pm
Thanks Jenny
Artie
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- January 6, 2015 at 3:44 pm
Thanks Jenny
Artie
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- January 6, 2015 at 3:44 pm
Thanks Jenny
Artie
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- January 6, 2015 at 9:10 am
Artie, I am so sorry you have to deal with all this stuff. I agree to all the above said, i have nothing to add. We also made bad experiences with scan reports and different doctors looking at the scans. I wish they could give you a clear picture and I cross my fingers that your doc can help you today. All the best, Jenny
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- January 6, 2015 at 12:36 pm
Artie,
I have been following your fight for some time now and you have remained strong – keep it up. You will be in my thoughts and prayers.
Kevin
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- January 6, 2015 at 12:36 pm
Artie,
I have been following your fight for some time now and you have remained strong – keep it up. You will be in my thoughts and prayers.
Kevin
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- January 6, 2015 at 12:36 pm
Artie,
I have been following your fight for some time now and you have remained strong – keep it up. You will be in my thoughts and prayers.
Kevin
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- January 7, 2015 at 2:54 pm
Artie,
Just wanted to write and let you know that I am thinking about you and praying for you. As I have said before your journey with melanoma and my husbands is so similar so I know what you are going through.
Emily
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- January 7, 2015 at 3:21 pm
Didn't really get specific answer to this yesterday. Basically he said I still have several tumors growing. Pd1 for me is not enough. I'll send a message to my mayo doc since it was his folks that created this report.
he did say going to Chicago would be a good thing.
also he didn't like my idea of radiating my shoulder/collar. So in a couple days they will let me know what the surgeon thinks. At best they will remove as much as safely can be removed. At worse they will get just enough for a sample. The choking sensation I'm getting seems to be getting worse every day.
He also mentioned if I test for a certain h receptor there is a tcell trial.
That was about it and I got my 12th dose of pd1.
Thank you everyone for your replies.
Artie
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- January 7, 2015 at 3:21 pm
Didn't really get specific answer to this yesterday. Basically he said I still have several tumors growing. Pd1 for me is not enough. I'll send a message to my mayo doc since it was his folks that created this report.
he did say going to Chicago would be a good thing.
also he didn't like my idea of radiating my shoulder/collar. So in a couple days they will let me know what the surgeon thinks. At best they will remove as much as safely can be removed. At worse they will get just enough for a sample. The choking sensation I'm getting seems to be getting worse every day.
He also mentioned if I test for a certain h receptor there is a tcell trial.
That was about it and I got my 12th dose of pd1.
Thank you everyone for your replies.
Artie
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- January 7, 2015 at 3:21 pm
Didn't really get specific answer to this yesterday. Basically he said I still have several tumors growing. Pd1 for me is not enough. I'll send a message to my mayo doc since it was his folks that created this report.
he did say going to Chicago would be a good thing.
also he didn't like my idea of radiating my shoulder/collar. So in a couple days they will let me know what the surgeon thinks. At best they will remove as much as safely can be removed. At worse they will get just enough for a sample. The choking sensation I'm getting seems to be getting worse every day.
He also mentioned if I test for a certain h receptor there is a tcell trial.
That was about it and I got my 12th dose of pd1.
Thank you everyone for your replies.
Artie
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