Hey LC Survivors,

I have a question for you. I have been dealing with Joint Pain and some stiffness mostly in my legs, and back. I've had this for over a year now, but little by little it seems to be getting worse. To be honest with you, I am slowing down and being I am only going to be 56 soon, that's really not old for the way I feel. Just kind of sore all over for a while in the a.m.

When I first get out of bed in the morning I am very stiff and walking isn't easy to do. I kind of shuffle my feet taking small steps for the first 2 to 3 minutes after I get out of bed and I am stiff and sorta sore all over my body.

Most of the day I am fine as long as I keep moving, but if I set down stay put for over a half hour the stiffness & slow movement starts in all over again for a little while until I move around and work it out.

Could it be Arthritis? Sure it could! Could it be Tendinits? Sure it could! Or could it be a long term side effect from chemo? Sure it could!

Do any of you have anything like this going on? I am limited as to what kind of mediations I can take for this. Inflammatory meds are out for me because of the heart issues.

My hubby just went to a Orthop/Arthritis Doctor and had TON'S of blood work done and holy crap they charged $1,800.00 dollars for the blood work they had done. Yes, insurance is paying for this , but MY GOODNESS!!!! Anyway, all the tests they did on him, (and he has a LOT of what I have) his tests showed he has a little tendinitis in his arms and thats all he has. Before I run to the doctor, (as you all know how much we hate to do that all the time!) I thought I would run this past all my friends here to see if any of you are dealing with anything like I am?

Thanks everyone for your help in advance. I really have a feeling this is chemo (down the road) related!

Thanks and Have a Wonderful Day!

_________________
Warm and Gentle Hugs,
Connie B
Date Dx.d, 7/21/1995, Age 43, Adenocarcinoma, Stage IIIB, had 3.4cm tumor and three cancerous lymph nodes.
7/25/1995 had Left Lung Removed along with several lymph nodes.
9/9/95 Started Chemo (VP-16/Cisplatin), & Radiation (36 treatments). Cancer Free.
8/11/2003 CT Scan found 4mm Nodule Right Upper Lung. Did PET scan & Nodule Lite up. Also found a Tumor in my Left Atrium (Heart)
8/21/03 Open Heart Sugery for Myxoma Tumor in Left Atrium. During heart surgery (3) surgeons checked 4mm nodule & agreed it did not appear to be cancerous.
11/2004-CT & PET scan, nodule still there 6mm will watch.
4/2005-CT, Nodule still there and has grown to 8mm will do another CT in 9/2005. Waiting & watching nodule.
9/2005 CT Nodule has shrunk to 5mm. Doctor's feel nodule could be scar tissue.
2/2006 Having Shortness of Breath problems.
4/2006 CT, nodule 5mm No Change.
11/2006 CT scan no change in Nodule.
4/26/07 Results of CT scan shows I have another Noudule. Now have two nodules, one is 6-7mm & the new one is about 3mm.
9/2007 CT shows 3 nodules all mm in size. First 2 have no change in them. New one is very small. Repeat CT in 6 months.
12/11/07 Still NED
5/7/08 CT (right lung) (nodules watch) two new nodules I now have 5 nodules. Will watch via CT scans.
10/08 CT Scan showed 1 nodule 6mm has grown to 1.2cm.
5/22/09 CT Scan (awaiting results)
7/4/09 PET Scan (3 nodules in left lung are now 1.4c.m in sizes.
8/13/09 Did Bronhcoscopy
8/18/09 NOT Cancer, no cancer found.
Next PET Scan Oct 2009.

READ MY STORY @ http://www.lungevity.org/l_community/vi ... hp?t=13224

Lost my Father age 56(1970), Mother age 66 (1987), and Sister age 43 (1988) all to Lung Cancer
AVATAR is in Iowa @ the Presidential Cancer Forum

I have stiffness in my lower back. It's not too bad when I get up (not too good, either), but is worse after my shower. If I keep moving, it "works out" as you put it. It's hard to commute and then get out of the car!

I'm not even 40, but it could be arthritis...or side effects....or being overweight and not real limber...

I take Aleve in the morning and can usually make it through the day. Of course, if I get a migraine, I'm kinda screwed cuz I can't take my migraine medication after taking the naproxsyn. Go figure!

Maybe try acupuncture? I'm really thinking about it...

I've been thinking about acupuncture as well! (good minds think alike?) I did the chiropractor thing too, and it did help with my back pain a year ago or so, but this isn't like that pain. I did also have an MRI done about 8 months ago or so and that was all clear too other then a little disk problem in my back, but that's not what is causing this stiffness.

So, maybe you need a nice new cushy car to drive back and forth to work in? Either that or you need to start working closer to home! (easy for me to say)! I'm thinking LIIMO (WITH) a driver! LOL!

So, it's acupuncture time................. anyone eles done acupuncture? My Ex hubby did many moons ago for his back problems (he was a truck drive) and he swore by the gal that did him. (I think he did more then swore by her too, but we won't go there)! All kidding aside, he did feel it worked well for him.

_________________
Warm and Gentle Hugs,
Connie B
Date Dx.d, 7/21/1995, Age 43, Adenocarcinoma, Stage IIIB, had 3.4cm tumor and three cancerous lymph nodes.
7/25/1995 had Left Lung Removed along with several lymph nodes.
9/9/95 Started Chemo (VP-16/Cisplatin), & Radiation (36 treatments). Cancer Free.
8/11/2003 CT Scan found 4mm Nodule Right Upper Lung. Did PET scan & Nodule Lite up. Also found a Tumor in my Left Atrium (Heart)
8/21/03 Open Heart Sugery for Myxoma Tumor in Left Atrium. During heart surgery (3) surgeons checked 4mm nodule & agreed it did not appear to be cancerous.
11/2004-CT & PET scan, nodule still there 6mm will watch.
4/2005-CT, Nodule still there and has grown to 8mm will do another CT in 9/2005. Waiting & watching nodule.
9/2005 CT Nodule has shrunk to 5mm. Doctor's feel nodule could be scar tissue.
2/2006 Having Shortness of Breath problems.
4/2006 CT, nodule 5mm No Change.
11/2006 CT scan no change in Nodule.
4/26/07 Results of CT scan shows I have another Noudule. Now have two nodules, one is 6-7mm & the new one is about 3mm.
9/2007 CT shows 3 nodules all mm in size. First 2 have no change in them. New one is very small. Repeat CT in 6 months.
12/11/07 Still NED
5/7/08 CT (right lung) (nodules watch) two new nodules I now have 5 nodules. Will watch via CT scans.
10/08 CT Scan showed 1 nodule 6mm has grown to 1.2cm.
5/22/09 CT Scan (awaiting results)
7/4/09 PET Scan (3 nodules in left lung are now 1.4c.m in sizes.
8/13/09 Did Bronhcoscopy
8/18/09 NOT Cancer, no cancer found.
Next PET Scan Oct 2009.

READ MY STORY @ http://www.lungevity.org/l_community/vi ... hp?t=13224

Lost my Father age 56(1970), Mother age 66 (1987), and Sister age 43 (1988) all to Lung Cancer
AVATAR is in Iowa @ the Presidential Cancer Forum

Well Connie I can't believe that you actually have posted looking for some help and I've got nothin' for you. I can tell you though that since my treatments, I have had terribly achy legs and knee joints...you know the kind that keep you awake at night. I never had them before but in my case it could be due to many things...exercising more, chemo, the clinical trial I was on maybe. I do know though that there can be long lasting affects from chemo. And it does take me awhile to loosen up and find my stride in the morning. But take heart that I am younger than you. I hope you find something that helps. Perhaps it is a good excuse to elicit a good leg massage and rub from your husband! Take care
Sandra

_________________
See my survival story at http://lungevity.org/l_community/viewtopic.php?t=39390

43 years old at diagnosis, wife and mother of 2 wonderful children (1 of each, 12 and 13).

March 2007-cough that wouldn't clear, gets progressively worse, can't sleep on left side by July 2007
August 2007-cloudy x-ray
Aug 27-finally a CT scan, and hospitalized, 3 litres of fluid on lung. Fluid drained, hospital stay, bronchs, mediastinoscopy, thorascopy. Had been told cancer earlier, not in fluid though. Tests done to confirm staging. Staging confirmed as Stage III A, later changed to III B.
Oct 4-PET scan for radiation planning.
Oct 17-Nov 28-30 radiation treatments
Oct 17 to Jan 11-4 rounds of chemo, cisplatin and etoposide
Jan 28-Ct scan/chest x-ray
Feb 12-doc said re CT scan "results are excellent, could possibly be a complete positive response!" Don't think it gets much better than that. I won't say NED yet....
Mar 18/08-NED!!!!! based on updated CT scan. Small pleural effusion left,difficult to tell, but rest is NED. And also cleared for START, liposome vaccine clinical trial.
April 3-1st day of vaccine, every week for 8 weeks, less frequently after that
-May 8-PET scan results, bone mets!!! Lungs still clear. Begin radiation/chemo planning. Off of clinical trial after 5 treatments.
-May 27 and 30, 2 radiation treatments, 14 greys total
-June 10-July 21-first 3 alimta infusion, also receiving zometa infusions separately
-CT scan results July 21-lungs still clear, back a mess, referred to a neurosurgeon for possible surgery
-Aug 13-1st gemzar infusion (stopped alimta, was intolerant and gemzar thought to be more effective)
Aug 16-MRI as reported pain in right leg, results were probable nerve damage from spine mets
-Aug20-end of first cycle of gemzar. Treatments stopped as was intolerant, too many side effects.
Sept 25-bone scan ordered by pain doc
Oct 3-started Tarceva, 150 mg
Oct 23 PET scan results-progression in spine and left lung with lymph node involvement-CRAP!!!!!
Nov 5-Tarceva down to 125 mg
Jan 20-failed bone cement procedure, pain worse
Jan 23-admitted to hospital for 10 days: full kidney failure, later discovered infection in chest which was lanced, identified dropped foot, off of Tarceva since Jan 20
Mar 31-1st of 10 radiation treatments to the spine
May 12-started navalbine

"Strength does not come from physical capacity. It comes from an indomitable will". -Mahatma Gandhi

"When the going gets tough, the tough get waterproof mascara" (assuming you have eyelashes left after chemo!)

Hi Connie,

I was like that for a while a few years ago. I looked and felt like Frankenstein when I got out of bed in the morning. My ankles were so stiff I couldn't bend them until they got going for a while, and every joint in my body hurt.

A short time later I was diagnosed with hypothyroidism. Once we got that under control, all that stiffness went away.

I also take fish oil supps every day and they're good for all kinds of things, including joint health.

I hope you get to the bottom of this soon. You are right, 56 is no time to slow down!

Cindy

_________________
age 56
surgery 6/20/03, stage 1B, upper left lobectomy
started adjuvant chemo on 08/14/03
3 cycles--cisplatin/gemzar
finished chemo 11/6/03
now 9 years post-lobectomy, annual x-ray and follow-up with surgeon
follow-up with oncologist every year/bloodwork and clinical exam

2001 early stage breast cancer/surgery and radiation only, no chemo needed. Mammograms once a year,

Just passed 11 year mark for the breast cancer and 9 year mark for the lung

Thank you Cindy for that information. That's very helpful. This feeling of being locked up is for the birds. I feel like "Tim Conway" and I look like him when I walk.

Plus I figure with all that my body has been through over the last 5 years, let alone add on my lung issues too......... I know how lucky I am to be here and to be able to do all the things I can and do do, but damn, this stiffness and aching stuff gets to you.

Wow Sandy, I had no idea I never asked for help?! Now and then I know I have, but I also have lots of good LC Survivor friends here in Minnesota from my In Person Lung Cancer Support Group that I bounce a LOT of stuff off first. But I come here too when I don't find answers anywhere else.

I also keep my PROFILE up to date rather then share when I am going to CT scans, etc.,, etc.

Thanks everyone for your help. I always appreciate your input and your help.

Wishing us ALL a wonderful day!

_________________
Warm and Gentle Hugs,
Connie B
Date Dx.d, 7/21/1995, Age 43, Adenocarcinoma, Stage IIIB, had 3.4cm tumor and three cancerous lymph nodes.
7/25/1995 had Left Lung Removed along with several lymph nodes.
9/9/95 Started Chemo (VP-16/Cisplatin), & Radiation (36 treatments). Cancer Free.
8/11/2003 CT Scan found 4mm Nodule Right Upper Lung. Did PET scan & Nodule Lite up. Also found a Tumor in my Left Atrium (Heart)
8/21/03 Open Heart Sugery for Myxoma Tumor in Left Atrium. During heart surgery (3) surgeons checked 4mm nodule & agreed it did not appear to be cancerous.
11/2004-CT & PET scan, nodule still there 6mm will watch.
4/2005-CT, Nodule still there and has grown to 8mm will do another CT in 9/2005. Waiting & watching nodule.
9/2005 CT Nodule has shrunk to 5mm. Doctor's feel nodule could be scar tissue.
2/2006 Having Shortness of Breath problems.
4/2006 CT, nodule 5mm No Change.
11/2006 CT scan no change in Nodule.
4/26/07 Results of CT scan shows I have another Noudule. Now have two nodules, one is 6-7mm & the new one is about 3mm.
9/2007 CT shows 3 nodules all mm in size. First 2 have no change in them. New one is very small. Repeat CT in 6 months.
12/11/07 Still NED
5/7/08 CT (right lung) (nodules watch) two new nodules I now have 5 nodules. Will watch via CT scans.
10/08 CT Scan showed 1 nodule 6mm has grown to 1.2cm.
5/22/09 CT Scan (awaiting results)
7/4/09 PET Scan (3 nodules in left lung are now 1.4c.m in sizes.
8/13/09 Did Bronhcoscopy
8/18/09 NOT Cancer, no cancer found.
Next PET Scan Oct 2009.

READ MY STORY @ http://www.lungevity.org/l_community/vi ... hp?t=13224

Lost my Father age 56(1970), Mother age 66 (1987), and Sister age 43 (1988) all to Lung Cancer
AVATAR is in Iowa @ the Presidential Cancer Forum

Have you tried glucosamine and chondroitin (sp?)? That might help - takes a while.

Muriel

_________________
Dx NSCLC 5/03. Surgery UR lobe. Staged as 1B. Chemo (taxol & Carbo)9/15/03 - 11/13/03. Wonderful CTs until Nov 04. Surgery 11/27/04, again staged as 1B. Chemo (Cisplatin and Gemzar) 2/05 to 6/05. Good CTs and PET since chemo.

Connie, I've been walking around with the symptoms you describe for years but I'm 64. I just told my husband this morning that the doctors see me when I've been up and around and I look fine but when I get up in the morning I'm bent and shuffle like an old lady. Same thing if I sit for a half hour or more and get up.

Over the years (before dx) I've had undiagnosed pain, mostly in lower back, legs, hands and wrists. I always attributed it to arthritis. It runs in my family and I've broken a number of bones over the years and was severely wrenched in a car wreck years ago. I used to manage it with Aleve but can't take it with chemo. When it's gotten really bad, I've used accupuncture with some success. It's not cheap though and it's really important to have a connection with the practicioner. I've been to three or four and when I've experienced the most benefit has been with accupuncturers I really liked. I didn't have any luck with the glucosamine and chrondroitin even though I know others who have.

Best of luck, Judy in Key West

_________________
Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.

Hey Girlfriend...

I'm sorry you are feeling so achey....but Con...I swear...I felt like that was me writing your letter...I have EXACTLY the same symptoms and as you know...I never had Chemo....When I get up in the morning ...I have to shuffle to the bathroom...my feet feel numb and I am very stiff...BUT..it only last a few minutes and then I'm OK after I start moving...but let me sit in front of the computer for more than a half hour...and it will be the same feeling as I get up in the morning....'Go 'figger'...

Hope you are feeling better soon...and about time for our time on the phone...will call you soon...

hugs...nonni

_________________
[size=9] dx 8/04 with LC...surgery on Sept 14,2004...removed right upper lobe...stage 1a nsclc..BAC with no other involvments and no furthur treatments...thank God
2/05 developed a bad cough...doc recommeds Pet
2/05 Pet/Scan clear..yay!
3/05 Chest exray ..clear
7/05 Chest exray ....clear..yearly ct/scan on 11/05
11/05...CAT done today....waiting and praying....
11/05 results from CT/Scan...doc say's
ABSOLUTELY OK...thank you Jesus....
11/17/05...oncoligist appointment....NED everything Ok ..going back in one year instead of 6 months..and then another Ct/scan
11/21/05...surgeon appointment...OK..se me in 4 months with a chest exray..
2/06 pins and needles back again...GP orders Pet/Ct scan...very nervous....
2/06 Pet/Ct negative...seeing surgeon in Mar...cancelled chest exray because of clean Pet..yahh!!
3/06 came down with the flu
3/06 doc orders chest exray...shows pneumonia...
7/06 chest exray..NED but still suggests CT/Scan soon
9/06 CT/Scan..results no change..I'll take it

Dec 06...back pain..doc orders exrays and MRI...both were normal..so why does my back hurt..I ain't asking?
2/07 chest exray...NED
8/07 chest exray..NED
8/07..having rib pain..doc orders 2 MRI's and Ct/scan..praying hard
9/07 Ct/scan shows 'possible lymph node enlargement...doc orders another Pet..
9/07..Pet shows ' unremarkable ..no malignancy...Praise God!!!
2/08 6 month chest exray...Normal

Hi Connie,
It's amazing how you've put into words the exact same symptoms as me as well. I have the Tim Conway shuffle in the morning big time. But it gets better once I've moved around a bunch. My symptoms have gotten a bit better over the past month, I think it was just waiting it out, but I did also try Turmeric supplements which are supposed to help the joints (It's just the ingredient in curry).
Anne

_________________
"If you can find a path with no obstacles, it probably doesn’t lead anywhere." ~Frank A. Clark

6/30/07 diagnosed with stage IV NSCLC adeno. with met. to spine, hip, shoulder, rib. Back pain severe. Never smoked.
36 at diagnosis with kids age 17 months, 6, and 8 (at time of dx)
7/19/07 1st chemo Cisplatin, Taxotere, Avastin
chemo every 3 weeks for 6 rounds
lung masses shrinking...more than 50% after first 2 rounds, then little by little
11/27/07 started Tarceva or Placebo (clinical trial) daily with continued Avastin every 3 weeks
1/11/08 CT stable, maybe very slight decrease in size
2/25/08 CT stable, bone scan shows healing of compression fracture in L1, bones clearing up except for spine. back pain better, neuropathy much better except for toes, but arthritis like pain in all joints.
4/7/08 CT stable, brain MRI normal (still having headaches)
8/11 CT still stable, 1 mm decrease, bone scan-slight improvement
11/3 CT stable, but original symptoms have been gradually returning
3/9/09 progression in lungs. Off Tarceva/Avastin, will start Alimta 3/13
4/23/09 Brain MRI normal, CT basically stable, 1 mm growth in smallest nodules, larger ones stable. will have 2 more Alimta then check again.
5/15/09 Alimta not working, symptoms worsening
5/27/09 start 3 weeks radiation for pain management.
7/30/09 first Gemcitabine
10/2/09 progression, PICC line put in, start Navelbine tomorrow
12/2/09 2 cycles of navelbine complete, CT shows more progression, PICC line out

Hey Connie, Did you ever find a solution?

I have this same problem as does the hubby. Even the lady next to me in Yoga was complaining that she was too stiff to straighten up in class after sitting for awhile.

I think it is old age catching up to us. Anyway, I hope that's all it is.

Barb

_________________
BAC dx'd Oct 2000, age 46, Stage IB?
upper&middle right lobes resected
12.5 cm tumor with 0.1 mm hilar margin
Carboplatin Nov&Dec 2000
Radiation to lower right lobe Nov&Dec 2000
All CT/PET OK since resection
May 06, 2 stents to right coronary artery

Connie,
I'm curious too. Did you ever find out what it was? I'm more than 10 yrs. older than you and those symptoms are getting worse and worse for me. Altho. I recommended trying glucosamine and chondroitin, I haven't tried that for years. It did help the arthritis in my knee for a while. Eventually I had a total knee replacement. Now, I guess I need a total body replacement.

Do you think this is joint pain or muscle pain?

Muriel

_________________
Dx NSCLC 5/03. Surgery UR lobe. Staged as 1B. Chemo (taxol & Carbo)9/15/03 - 11/13/03. Wonderful CTs until Nov 04. Surgery 11/27/04, again staged as 1B. Chemo (Cisplatin and Gemzar) 2/05 to 6/05. Good CTs and PET since chemo.

Joint, muscle, whatever. I also ache all over my body most of the time. It seems worse since my dx, I think because they took away my Aleve. I routinely took 2 to 3 to get through the day and night. I always thought it was old age compounding the fact that I was in a car accident when I was about 35. I don't think you heal the same after a certain age.

I laughed when they started asking about numbness in my hands and feet when I went on Avastin maintenance. I've had numbness in some of my fingertips since my son was born in my early twenties. But I'm thinking now I probably should tell my onc. I started waking up with pins and needles in my hands. I thought I was just sleeping wrong. Now though, I'm noticing my hands going to sleep when I'm just sitting doing nothing.

I'm reminded of a doctor recently commenting on my history of not going to the doctor with a problem or not reporting problems now that I am being routinely seen: Well, I guess you figure if you wait long enough, it will either go away or fall off. I laughed but only after I said, yeh I guess that's about right.

Judy in Savanah, GA

Sorry I didn't get back to everyone sooner on this.

Sadly enough, I have been seeing doctor's for just about EVERYTHING and the stiffness issues isn't anything to worry about. I guess what that APPEAR to be saying is....................... Well, your not getting any younger!!!!!

But, some of the pain issue was surgery or is surgery related from the 4 open heart surgeries I have had over the last 5 years.

I don't have any Aurther (HOORAY), and nothing major is causing it. (DARNIT)! So I guess the GOOD NEWS is, I'm getting older! And to be honest with you, that really IS good news, being I didn't think I would live to see 45 after I was dx.d with lc!

I do have two blocked vessels and corroded artery problem in my neck right now that we are dealing with. As you ALL know, it's always something! But, I'm still kicking and still shuffeling and still moving slower then normal. But, I'm moving!!!!!!

Sorry I can't put light on some of this, other then making it an age issue, but I'm okay with knowing that.

Muriel, I can't take most alternative meds because of my new mitral valve. I'm on Cummodin and I have to pass everything by my Heart Doc now! As for it being joint or muscle, I have to say a little of both. The muscle pain would have been caused from not moving around as much as I would have liked to. This last surgery in December 2007 really knocked me on my can. This was a SLOW recovery! But, thanks for the helpful hints all. I honestly do appreciate them.

Oh, and just so you know, I had my CT scan and I am still OKAY and Clean and Clear. Just got the nodules and they havn't changed!! I'll be celebrating 13 years at LAF Summit on July 25. HOORAY!!!!

Love & Hugs to All,
Con

_________________
Warm and Gentle Hugs,
Connie B
Date Dx.d, 7/21/1995, Age 43, Adenocarcinoma, Stage IIIB, had 3.4cm tumor and three cancerous lymph nodes.
7/25/1995 had Left Lung Removed along with several lymph nodes.
9/9/95 Started Chemo (VP-16/Cisplatin), & Radiation (36 treatments). Cancer Free.
8/11/2003 CT Scan found 4mm Nodule Right Upper Lung. Did PET scan & Nodule Lite up. Also found a Tumor in my Left Atrium (Heart)
8/21/03 Open Heart Sugery for Myxoma Tumor in Left Atrium. During heart surgery (3) surgeons checked 4mm nodule & agreed it did not appear to be cancerous.
11/2004-CT & PET scan, nodule still there 6mm will watch.
4/2005-CT, Nodule still there and has grown to 8mm will do another CT in 9/2005. Waiting & watching nodule.
9/2005 CT Nodule has shrunk to 5mm. Doctor's feel nodule could be scar tissue.
2/2006 Having Shortness of Breath problems.
4/2006 CT, nodule 5mm No Change.
11/2006 CT scan no change in Nodule.
4/26/07 Results of CT scan shows I have another Noudule. Now have two nodules, one is 6-7mm & the new one is about 3mm.
9/2007 CT shows 3 nodules all mm in size. First 2 have no change in them. New one is very small. Repeat CT in 6 months.
12/11/07 Still NED
5/7/08 CT (right lung) (nodules watch) two new nodules I now have 5 nodules. Will watch via CT scans.
10/08 CT Scan showed 1 nodule 6mm has grown to 1.2cm.
5/22/09 CT Scan (awaiting results)
7/4/09 PET Scan (3 nodules in left lung are now 1.4c.m in sizes.
8/13/09 Did Bronhcoscopy
8/18/09 NOT Cancer, no cancer found.
Next PET Scan Oct 2009.

READ MY STORY @ http://www.lungevity.org/l_community/vi ... hp?t=13224

Lost my Father age 56(1970), Mother age 66 (1987), and Sister age 43 (1988) all to Lung Cancer
AVATAR is in Iowa @ the Presidential Cancer Forum

Connie, All I can say is 13 years since dx of IIIB--wow. It does my heart good to consider that. Thanks for the reminder.

Judy In Orlando, FL

_________________
Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.