Ellen in PA

Hi Ned. I think the short answer to your question of how you can distinguish back pain due to bone mets from back pain due to injury/degenerative processes is that sometimes you can't. Here's how I came to that conclusion: Background (no pun intended): Chronic lower back pain (like since high school!), finally had back surgery in 2000 to fuse the L4-L5 and L5-S1 joints. Surgery was botched and of no help but I learned to stop complaining. Fast forward: Dx 12/07 with NSCLC with mets to pelvis (beginning precisely where they'd harvested bone in 2000 for the back surgery, hmm, rear left iliac crest) but it didn't hurt at all. About 2 months ago, I felt pain in the right groin and hip and they found a met on the right side of the pelvis hitting the top of the femur. Then I developed good old sciatica -- shooting pain down the right leg, sensations of burning and stabbing in right leg and foot. This I was sure was not from a met since it felt like the sciatica I've been prone to lo these many years. Well, I was wrong. A third met had formed on the L3 vertebra, on the 'inside', facing the spinal cord (actually cauda equina at that level) and poking into it. And it was the L4 nerve root being poked, which doesn't exit till the L4-L5 space. So it was the same nerve root that I'd always had problems with, only this time caused by a bone met instead of a degenerated disk, and higher up in the spinal column than the disk was. I agreed to 14 radiation tx to nuke the right side of the pelvis and the L3 vertebra. The L3 vertebra problem disappeared the second week of tx and has stayed away; the right hip/groin still hurts like hell but I'm told the radiation could still do its thing. Anyway, the lesson for me is that all pain is something impacting somehow on some nerve and the affected nerve doesn't care whether it's a tumor or a piece of spinal bone collapsing on it or a bullet or whatever -- it just hurts. Btw, my original met (left rear) is now quite huge but is still totally painless -- not near any nerves or moving parts. So maybe mention the problem to your onc. Just stay away from neurosurgeons no matter what it is. In the meantime, you might want to try large doses of Ibuprofen (800 mg at a time) -- it works pretty well for me whereas Oxycontin etc do nothing. Good luck! And aloha from Philadelphia.

tiff

I realize you're asking only for those who've done chemo/rad to check in but I figured I'd add my 2 cents for comparison. I was diagnosed December 2007 with Stage 4 NSCLC adenocarcinoma with mets to lymph nodes and pelvis. I felt fine -- only symptom was PEs and have been taking 2 shots/day of Lovenox for that. I opted to do no chemo or rad. July 2008: Lung tumors (3) termed 'indolent' -- no change there, so far. Lymph nodes may be growing and spreading but no symptoms. Bone mets growing and spreading -- new mets to pubic bone and to L3 vertebra. Bone mets now causing some pain and have been warned that stress fractures are highly possible so I've agreed to do 15 sessions of radiation to the pelvis and L3. (The discomfort is handle-able with Ibuprofen -- it's the fracture threat that made me change my mind.) My performance level is still judged to be 0 or 1; no cough or breathing problems; blood O2 still high 90s. And I'm still happily smoking. (I will smoke as long as it's pleasurable, which it still is.) No colds, no nausea, no constipation, no fatigue, no weight loss, nothing but a few achy bones. Just thought some might be curious as to one possible scenario with no chemo, rad, or surgery. Ellen in PA

Hi Michele. I know how you feel. My mother died when I was 19 and, when my father remarried 3 yrs later, I cried my eyes out. But now, being 64 and having been married to a fantastic guy for the past glorious 41 yrs, I have a very different point of view. And maybe -- just maybe -- it would be not that different from your mother's. Faced with NSCLC Stage 4, I hope fervently that my husband finds a new partner after I'm gone ASAP! He's 65 and in pretty good health but I'm devastated at the thought of him being alone and especially of him growing old alone. And I make sure to let him know how much I want for him to be with someone who loves him and who he loves after I'm gone. No one can or will ever take your mother's place for you. But there's a reason marriage vows say 'Till death do us part'... Try to be happy for him that he has found someone to share his life with, difficult tho that may be for you. And good luck. Ellen in PA

Spring 2007 I noticed I was getting SOB when walking my speedy little dog. In early July I mentioned it to my cardiologist (routine visit since heart attack in 2001) and he sent me for a stress test. I aced it and figured I was just showing my age. Got more and more SOB while walking the doggie, would stop and sit on a stoop, and would feel better and continue. On Thanksgiving night, there was no stoop on the block I was on -- and I passed out. Gashed my forehead and so went to ER -- they insisted on admitting me to see WHY I'd passed out. Kept me for 3 days, did all sorts of tests, and came up with 'pulmonary hypertension' and told me to go back to my cardiologist. A week later I passed out again and made an appt with a new cardiologist, closer to home, for Dec 26. She heard my tale and sent me for an immediate chest CT-scan. The radiologist looked at it and called her while I was getting dressed, telling her I had a bunch of PEs and what looked like lung cancer. The cardio told him to have me wheeled to Admissions and she'd meet me there. They admitted me and put me on Heparin etc. I was in the hospital for two weeks, during which time they ascertained that I had adenocarcinoma of the lung with mets to the lymph glands in the chest and to the pelvis, thus Stage 4. Btw, the first hospital did a chest x-ray and (as I learned a month later) the radiologist wrote 'possible pneumonia' -- but nobody noticed the PEs or the cancer and nobody followed up on the 'possible pneumonia'. That was Jefferson in Philadelphia, if anybody's interested. The second hospital, where I was basically diagnosed in under a half hour, was HUP and the remarkably astute cardiologist there was Dr. Susan Wiegers.

Well, I'm (naturally) right-handed and my primary tumor is in the upper right lobe. At least some of us are consistent. ;) Ellen in PA

I guess I'm the junior member of this group in that I was diagnosed not quite 6 months ago. No noticeable change since dx except some aches from the bone mets in the pelvis area and they respond very nicely to ibuprofen. Re smoking, I've smoked for 53 years (yeah, started at 11) and will continue to do so as long as it's enjoyable. (I still have no cough or breathing problems and still have lung function over 90%.) My only 'treatment' is two daily shots of Lovenox for clots -- I had pulmonary embolisms and was SOB and passed out twice and that's in fact how I came to be diagnosed. The Lovenox and the vena cava filter they put in have solved that problem. So far, so good, subject to change without notice. Ellen in PA

Like the others here, I can also vouch for life after blood clots. In fact, pulmonary embolisms was how my lc got diagnosed -- I passed out twice while walking my dog, my cardiologist ordered a chest CT scan, and I was admitted immediately and diagnosed (NSCLC Stage 4 adenocarcinoma) within 24 hours. They also inserted a vena cava filter to catch future clots within an hour of the CT scan. That was back in December. In the hospital I was on Heparin and at home I give myself two injections a day of Lovenox. Annoying but no big deal. And, of course, I hadn't had any chemo at that time. (Still haven't had any and don't expect to.) Good luck to you and your mom. Ellen in PA

Hi folks. Wow, you guys are really nice! Thank you all for your replies and your very warm welcome. I will give the chemo more thought. Ellen in PA

Hi folks. I've been lurking for about a week and figure it's time to declare myself. I started getting short of breath when walking my dog back in July '07. Went to cardiologist, who sent me for stress test -- I passed with no problem. Fast forward to Thanksgiving night, '07 -- I'm walking my dog and am winded (as usual) but there was no stoop to sit on (which I'd gotten in the habit of doing) and so keep going -- and passed out. Wake up on the sidewalk with a gash in my forehead and some nice stranger drives me and the doggie home. Husband insists on Emergency Room (my face was covered with blood) so we call 911 and get taken to Jefferson Hosp., a (supposedly) excellent Philadelphia hospital. They insist on admitting me to find out why I passed out and keep me for 3 days doing all kinds of tests and discharge me with a dx of 'pulmonary hypertension' and tell me to see my cardiologist. I make an appt with a new cardiologist for December 26. Pass out a week later in the street but no wounds this time. Show up for cardiologist appt and tell her the story. She sends me for an immediate chest CT-scan. While I'm getting dressed after the scan, the radiologist calls her and tells her I've got pulmonary embolisms and tons of clots and probably lung cancer. She tells him to have me wheeled to Admissions. (Her office is in HUP, another top Philadelphia hospital.) I stay there for 2.5 weeks while they confirm the dx. I'm told to expect to live about 8 months and advised to go home and 'get [my] affairs in order'. And, except for the two fainting episodes, I have NO symptoms -- no pain, no cough, clear chest. Well, it's now March and I'm on Lovenox for the clots (was on Hepparin in the hospital) and feel absolutely fine. The oncologist has suggested several chemo regimens and the one she thinks I'd do best with is Carboplatin (or maybe Cisplatin?) and Alimta. But I'm real reluctant to make myself feel lousy in the short time I have left feeling good. Suggestions/advice gratefully accepted. TIA. Ellen