kkhadder Posted September 10, 2011 Share Posted September 10, 2011 Will try to be brief and then hoping for some insight. Hubby diagnosed with NSCLC 2.6 years ago. Had a upper right lobectomy. Nodes all negative. took out 12 or so. Followed with chemo cisplatin/navelbine and 28 radiations because tumor was pressing against chest wall. In March of this year, a small nodule in middle part of upper left lung showed growth from january to march from 3mm to 6mm. After research and opinions everyone leaned towards this being a 1a tumor starting on it's own and not a spread so did cyberknife. hubby has had severe pain in this groin areas and hips for over 3 months now. all the doctors, oncologists know this. Pet scan in June showed no cancer expect for little node (which we know was cancer from biopsy). Has had xrays and mris too. Oncologist leaned toward rheumatoid arthritis and said to see a specialist. Fam doc tested blood and it came back negative for rheumatoid but elevated sedimentation rate of 63!!! And all we read about that is CANCER. The xray did not show significant arthritis on hips either ... he does have a history of back problems (2 back surgeries). He is a diabetic and also is seeing chiropractor, massage therapist and a physical therapist. I am not sure if manipulation of areas can raise inflammation levels too. What should we do next? No one seems concerned about cancer but I am since we got the rate back and it was 63? Quote Link to comment Share on other sites More sharing options...
ts Posted September 10, 2011 Share Posted September 10, 2011 Hi k- I saw you posted on Grace as well, but welcome to LCSC as well. I think the faculty there has given you the most knowledgeable answer you will get to this question. It sounds like inflammation, but not necessarily related to cancer. I am sorry to hear that he is in pain - is he able to take anti-inflammatory medicines and/or narcotics to be comfortable? Breaking the pain cycle can really help. I say this as someone who hates to take anything, but have learned better if I want to feel better in the long run. Toughing it out isn't always the right thing to do. Quote Link to comment Share on other sites More sharing options...
kkhadder Posted September 10, 2011 Author Share Posted September 10, 2011 He has been living on aleve, and vicadin. He is icing and trying everything he can... Quote Link to comment Share on other sites More sharing options...
cat127 Posted September 10, 2011 Share Posted September 10, 2011 The docs over at Grace gave you one good option - a rheumatologist. If they can't find anything, then the other option is a pain management specialist. My sister had unexplained pain that was only finally handled by getting her to a pain specialist. While she spent a lot of time worrying it was due to cancer, she's had at least 2.5 yrs worth of scans that still haven't shown anything new. She also eventually weaned off the meds with the pain specialist and now just has occasional twinges of the same pain. We've never known the cause of it. In the end, finding the cause wasn't as important as getting her pain-free or at least reducing the pain as best as we could. She was very lucky to end up off the pain meds and without the pain. So much so that they made quite a fuss over her at the pain clinic. But the pain clinic can definitely help make pain much more tolerable. No one should have to suffer with pain like that. I hope someone is able to help your husband find some relief from it. Quote Link to comment Share on other sites More sharing options...
Alan Posted September 10, 2011 Share Posted September 10, 2011 It could also be inflamation caused by cisplatin and the effects of radiation. Make sure you ask all the Docs about those things. Cisplatin is very heavy duty. Your body takes time to heal from that. I doubt that it's a new cancer with all that treatment so recently. Can you try to get all those Docs on the same page? Quote Link to comment Share on other sites More sharing options...
kkhadder Posted September 14, 2011 Author Share Posted September 14, 2011 Update! Saw a rhumetoid specialist today and they believe he has polylalagia rheumatica. Treatment is steroids. Praying praying praying this is it and he gets relief. Quote Link to comment Share on other sites More sharing options...
Bud Baker Posted September 16, 2011 Share Posted September 16, 2011 Only in a lung cancer forum can a diagnosis of polylalagia rheumatica be good news. But it sure beats the heck out of lung cancer, doesn't it? Here's hoping the doctors are right and the steroids work great for him. Quote Link to comment Share on other sites More sharing options...
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