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?

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.

_________________
(photo: me in '61)
Female never smoked, 52 at diagnosis, otherwise healthy
09/08: false cardiac event = finding of 3 cm tumor upper right lobe plus two .5 cm nodes elsewhere on chest x-ray at ER
09/08: CTScan with IV contrast confirms.
10/08: Pulmonary referral for EBUS - bronchoscopy - confirms NSCLC - adenocarcinoma, with bronchoalveolar features
10/08: PetScan - further confirmation, classified T1N0MX (false negative) VATS scheduled.
11/08: full open surgery - revised to T4N2MX with positive spread to 2 lymph nodes, removed upper lobe with 3 cm tumor and partial mid lobe with (1) .5 cm tumor, 3 lymph nodes on trachea - 1 lymph node and margins negative.
5 night hospital stay.
12/08: Port-a-cath implanted
12/08: Brain MRI and hearing test - good other than minor high end loss in left ear
12/08: start (4) 21 day cycles of chemo - day 1 cisplatin and gemcitabine, day 8 gemcitabine alone, day 15 off - tolerated it pretty well - a little hair thinning and follicle inflammation, some ringing in ears and vertigo, much fatigue, and nausea. Kept my taste-buds almost intact.
02/27/09: completed 4 cycles of chemo!
03/03/09: removed port-a-cath
03/27/09: tattooed for radiation
03/30/09: start radiation (IMRT) 5x/wk for 6 weeks - fatigue, moderate esophagitis
5/08/09: completed treatment
6/22/09: NED
9/18/09: Recurrance in the liver and scattered in lungs. No symptoms. Rx Tarceva.
9/25/09: start Tarceva
11/20/09: clear lungs, shrinkage in liver.
2/24/10: still good on Tarceva
6/3/10: graduated to 6 month scan
12/9/10: new 6 cm tumor in liver
12/28/10: stop Tarceva
1/10/11: carbo/alimta/avastin
3/11/11: scan after 3 cycles 72%ish met reduction, stay the course
5/26/11: scan after 6 cycles, stable.
5/31/11: begin Avastin maintenance.
8/17/11: met growth, stop Avastin. Start Alimta.
10/25/11: met growth, stop Alimta. Wondering what to do next?
1/24/11: start hospice

He has been living on aleve, and vicadin. He is icing and trying everything he can...

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.

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My sister Kelly was diagnosed with 3b NSCLC in May of 2007. A nodule on her adrenal gland has at times been thought to also be involved, but I, her surgeon, her radiation oncologist, and many oncologists I work with don't think it is. So we're going with that. She completed 5 rounds of carbo/taxol on a weekly schedule with concurrent radiation for 37 days. CT and PET showed nodes were clean but still residual activity in the tumor, which was reduced in size from 8x5 cm to 3x2cm. She attempted a lobectomy on 22 January 08 but the tumor resides a bit in the lower lobe in addition to the upper lobe, and the surgeon would not remove the entire left lung. She started Tarceva on 27 February 08. Her first scan showed decreased activity in the tumor and yet again, nothing new outside of that tumor. Her Dr. and I were actually kind of shocked! June '08 she had a total of 48 Gy of radiation via cyberknife. Her PET from 10 Sept '08 showed nothing new, the tumor size not really changed, but the SUV went down again, from 3.9 in May to 3.1, down from about 19 when this all started. She took a bit of a Tarceva holiday as we had some electrolyte issues due to not eating anything. She is currently back on it and taking 50 mg with tolerable toxicity. December '08 scan showed stable disease and yet again, less activity than before. April '09 scan actually said "area of hypermetabolic activity previously noted is not visualized today"! I could hardly believe my eyes and read it over and over. August and December '09 scans nearly identical! Now the June 2010 scan is just like the last ones - no uptake in the tumor, no new sites! Scan in January 2011 showed something on a rib on the contralateral side. Everyone in agreement that she broke a rib when she took a really bad fall a couple months ago. No one seems to think it is cancer, since the PET showed nothing in the lung or lymph nodes! Not moving to yearly scans yet though, so back in July! Our family really needed that good news as a month before we buried our 26 yr old nephew and are all still reeling from the shock and pain. July 2011 scan showed nothing new and she and the dr agreed to give her a drug break, so she went off Tarceva and so he wants to scan again in 3 months. There was a 3 mm nodule in the other lung and he didn't want to wait too long to scan given that and the no drug status. Scan in October of 2011 again showed nothing new, no growth, all is stable. The nodule in the other lung still listed as 2-3 mm. February 2012 scan was same as it ever was. :) Next scan is in August and she'll have gone one year without any treatment at that point. On May 19th it was 5 yrs from the day we heard she had lung cancer and we marked the occasion with a big party full of family and friends! She had a scan on Aug 24th and the results were more of the same, and marching orders from her oncologist that he doesn't need to see her for another year!

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?

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.

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.

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Bud

Long distance cyclist and lung cancer survivor
56 years old at time of diagnosis in 2007, now live in Crowley, Tx
Nov 2007 - Tentatively diagnosed as NSCLC stage I from CT scan
Dec 2007 - Upper left lobectomy, biopsy showed one cancerous lymph node, changing the diagnosis to stage II (squamous cell)
Feb to Apr 2008 - Three rounds of cisplatin and gemcitabine
Apr 2008 - chest x-ray, NED
May 2008 - brain mri, clear
Jul 2008 - CT scan, NED
Dec 2008 - CT scan, NED
June 2009 - CT scan, NED
Jan 2010 - CT scan, NED
July 2010 - CT scan, NED
June 2011 - CT scan, NED
May 2012 - CT scan, NED
December 2012 - CT scan, NED. I am now a 5 year survivor!

June 2009 - Wife Rose diagnosed with breast cancer
Stage III IDC
Sept 2009 - Finished 4 rounds of chemo (AC)
Nov 2009 - Surgery
March 2010 - Finished 12 weeks of weekly Taxol
August 2010 - CT scan, NED
August 2011 - Checkup, NED
August 2012 - Checkup, NED
The rest of my story is at:

http://www.lungevity.org/l_community/vi ... hp?t=38841

My blog - uneasy-rider.com