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Old 08-14-2007, 09:04 PM   #1
Sherryg683
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Well, I've got arthritis..any advise

I went last week to a pain management specialist to finally get some relief from the shingle pains I've had for 8 months. They did MRI's of my spine, neck. I met with the doctor today, it seems that I have a very bad case of arthritis in my spine, lower back and neck. I also have what looks to be a bone fragment on the left side of my neck that is pressing down on a nerve. And I have a degenerating disk in my lower back. He said that the arthritis is what is causing me all the pain and not the shingles. The compressed nerve in my neck is what is causing the radiating pain around my head. He said that he could not believe I was still as mobile as I was considering the severity of the arthritis. I guess all those years of playing tennis and punishing my body has taken it's toll. I go in on Thursday for an epidural block to help block out the pain. I still believe I have shingle pains but this block should help that also. Any advise from any of you that have arthritis to keep it from getting worse...sherryg683
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Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 08-14-2007, 09:41 PM   #2
StephN
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Question What kind of arthritis?

Dear Sherry -
Sorry for all that pain and not an easy fix ...
There are many kinds of arthritis and some of them do not cause the bone problems you have and some do.
My younger brother was diagnosed earlier this year with osteo-arthritis. It is something that has shown up on both sides of the family in grandparents but not our parents. He has a lot of pain and had to virtually give up golf (he lives on the 10th tee on a lovely course) and can barely lift his grandsons.

I am sure glad they did the scans and you have a difinitive answer. My friend had a nerve block for chronic lower back pain and they did it in 2 phases. It seems to have helped her a lot. Hope that will be the case with you. I will ask your guardian to do that for you!
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Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
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STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
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Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 08-14-2007, 09:47 PM   #3
tousled1
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Sherry,

I'm glad that nothing other than arthritis showed up on the MRI. I suffer from severe back pain all the time and see a pain management doctor once a month. I had cervical spine fusion and my entire lumbar spine is fused. In February my pain was so bad that my oncologist ordered an MRI of my entire spine -- nothing but arthritis, degenerative disc disease and a herniated disc right above my fusion. In addition to pain medication I take Lyrica which helps a lot -- also helps with my neuropathy from the chemo. I also take Glucosamine/Chondrotin which you can purchase over the counter. I take it 3 times a day and if I forget to take it my body lets me know. As for the epidural block - I've had them several times and each time I have gotten relief. Not much you can do about arthritis but I do highly recommend the Glucosamine/Chondrontin.
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Stage IIIC Diagnosed Oct 25, 2005 (age 58)
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Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
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Old 08-14-2007, 10:16 PM   #4
Sherryg683
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Thanks, I have to find out exactly what kind it is. This doctor was like this weird computerized robbot or something. You could tell he was highly intelligent but his bedside manner stunk. Everything he said was in very big, technical words and he talked too much and didn't listen when you asked questions. The nurse practitioner would occaisionally butt in and tell me what he was saying in words I could understand. He's not the normal doctor there but some specialist in town that I was told that I was lucky enough to get. I will ask more questions on Thursday. I was also put on Celebrex. I will get some of the Glucosamine tomorrow, I use to take them a long time ago when I was havng knee problems..sherry
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Sherry

Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 08-15-2007, 03:46 AM   #5
Becky
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Walk, walk, walk. It does help arthiritis. Also, Iceland Health Joint Relief Formula helps me. It has the long chain omega 3s so if you are supplementing with Omega 3 (fish oil) you can cut back. It has has all the traditional joint supplements (glucosamine sulfate, Collagen, Chrondronilin, and Hydralonic Acid. You are supposed to take 2 per day but I start out the first week with 4 to get the concentration up. Then I take 3 per day the second week then the recommended amount. It really helps and I can keep running because of this product. As far as Omega 3 it has 330mg EPA and 220mg of DHA per 2 tablets.

Yoga is also supposed to be beneficial too. I would give these things a shot and see if they do anything to help before considering surgery.
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Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

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Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 08-15-2007, 05:08 AM   #6
Mary Anne in TX
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Hi Sherry!
They found my arthritis in my neck on one of the earlier scans after diagnosis. Wasn't real surprised because my dad had the same problem in his neck for the last 10 years of his life. He found that his swimming 3 times a week (he had gone 3 - 4 times a week for years) was the best medicine. He also walked. But he found that the warmer pools were the best. He got exercise and the warm water gave his neck and back relief. When it got really bad, he went to a chiropractor for some temporary relief.
I am trying to decide for myself if the pain in my shoulder and neck are still from shingles are from arthritis. I do find that when I start the day with a good walk that my whole day goes better. I think that the shingles just made the arthritis worse and more troublesome!
Dad managed his by swimming, walking, and staying active. It really did seem to help and they were always amazed, so I'm doing the same. Having my granddaughter really helps. Almost 8 year olds don't know "slow"!!!!
Best wishes, ma
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Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
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Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
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Port removed August, 2012.
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Old 08-15-2007, 05:46 AM   #7
Believe51
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Unhappy Morning Sweetheart

My Mother-in-Law has two forms of arthritis and has had them for years. They suggested to her to try water therapy, since let's face it we know that excersising is out. Water therapy did help her some but she had trouble driving and walking there and stopped for a while. One of my girlfriends goes to therapy in the towns private pool because she does not want to 'feel' like she is in therapy. The main thing is allows them to loosen up and it is refreshing too. My father had his therapy in a special pool at the therapists office building, spoiled bum...he had a small pool that he could adjust the temperature in!!

Just thought I would send a different aspect of my thoughts on arthritis, medicine aside. There have been several people again who have found some relief with the heated water therapy, the important thing is do it with the advice from a doctor and go slow. They can let you know what you can and cannot do in the 'healing waters'. In conjunction with medicine and stretching daily they have recieved some sort of balance with this disease. Again, another stinky disease that needs maintainence. It is very painful, as if you do not have enough pain!!!(sooo mad!! Uggh!!) Tell God that this is all you can handle...please no more!! Big smiles.

You shall remain in our hearts and I shall revise my prayers for you this morning. Keep on keeping on YOU BIG BAD WARRIOR!!! Lot's of Love>>Believe51
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6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
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12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
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Old 08-15-2007, 10:15 AM   #8
Adriana Mangus
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Arthritis

Dear Sherry:

I was too diagnosed with arthritis at the joints, I only take Tylenol
and the combo glucosamine+chondro. It seems to be working.

Like Becky said walk, walk, walk is the best medicine....

Sorry to hear you are having these pains..ouch...
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1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 08-15-2007, 10:18 AM   #9
Adriana Mangus
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Question

Hi Becky:

Where do you get the Iceland Health Joint Relief?
Is this something you can get over the counter?
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 08-15-2007, 10:55 AM   #10
R.B.
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Hi Sherry oouch sounds painful.

I had a look at your recent posts and did not see anything on diet.

You might like to look at the posts on this site omega threes and sixes, fish oil etc.

There are several reports suggesting increased omega threes (and by implication balancing the omega threes and sixes) may reduce arthritis. Increased omega three and balancing the omega threes and sixes may also help reduce inflammatory pressures on the body.

http://www.ncbi.nlm.nih.gov/sites/en...ubmed_RVDocSum

Please discuss supplementation with your doctor as fish oil can cause blood thinning. 2 grams of DHA a day is suggested in a trial to be the level at which uptake of DHA drops off in women. Bottled is cheapest. Be aware of the A and D content of Cod liver based oils.

RB
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Old 08-15-2007, 11:15 AM   #11
Becky
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The website is www.icelandhealth.com

You need to click on "other products" and the joint relief formula is there.

Their phone number is 877-257-9174
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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