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Old 08-19-2015, 05:45 AM   #1
jra40
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Location: Pittsburgh, PA.
Posts: 260
5 years out - Chronic Pain

Hi All - It's been awhile since I posted but I do lurk to see how everyone is doing. I am coming up on my 5 year anniversary from diagnosis which is awesome but suffer from chronic nerve pain. Has anyone experienced this? It was very mild after I finished all treatments but in December of 2014 it started intensely and lasted almost a month. It's excruciating pain in my fingers, toes, hips, back, etc. - it doesn't happen all the time, I have weeks where I am good, but when it does happen, it's been debilitating.

Been to so many doctors, done so many tests, but no one seems to find anything. I have read posts from other cancer survivors on the Cancer Society website and there are many survivors that have this and it may be chemo induced fibromyalgia.

I feel like I am going insane since all the doctors I see feel I am lying or a hypochondriac! Just wanted to see if anyone has had this type of chronic pain after chemo.

Jessica
__________________
11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
8/4/15 - Hysterectomy & bilateral salpingo-oophorectomy. Due to large fibroids. No cancer!
8/8/15 - Started Arimidex
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Old 08-19-2015, 07:24 AM   #2
Carol Ann
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Join Date: Dec 2013
Posts: 1,045
Re: 5 years out - Chronic Pain

I am so sorry, not only for your pain, but for those doctors who are dismissing your pain and treating you like a liar/hypochondriac.

Just because you've had cancer doesn't mean you can't get fibromyalgia, whether or not the chemo is responsible, this is how you are feeling now and what you are experiencing. It drives me crazy that docs get on a narrow track and can't see that one condition doesn't negate something else happening.

I have not experienced this, but at the very least, is there any way you could bypass the cancer docs, and see someone who specializes in diagnosing/treating fibromyalgia?

I know, you probably already thought of this ... just wanted to let you know I am here feeling frustrated right along with you!

Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 08-19-2015, 08:21 AM   #3
Marcia
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Posts: 12
Re: 5 years out - Chronic Pain

I have had fibro for years and honestly, the best things I've found for the pain is Epsom salt baths, ibuprofen and getting enough rest. Cancer has kicked it into high gear, but I also take a lot of supplements to counter act the toxicity. Stress and fatigue are your worst enemy with fibro. Find a naturopath to help you�� best wishes!
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Old 08-19-2015, 11:33 AM   #4
Lucy
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Posts: 293
Re: 5 years out - Chronic Pain

Hi Jessica,

I'm sorry you're having to deal with this. I noticed the last comment on your signature is that you're on arimidex and I'm wondering if that's the issue. My guess is that it is at least contributing to the pain and discomfort. I was taken off of it for other reasons but I did experience significant pain in the areas you mentioned while on it. Once off of it things went back to mostly normal (some cancer treatment side effects are harder to shake than others).

Good luck, I hope things get better for you soon.
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Old 08-19-2015, 06:33 PM   #5
caya
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Location: Thornhill, Ontario Canada
Posts: 2,320
Re: 5 years out - Chronic Pain

I had fibromyalgia before BC, it went away during treatment (chemo killed it, according to my homeopathic dr.). Came back after treatment. I have been seeing a homeopathic dr. (okayed by my onc. and now GP) for a number of years, she has gotten me off many meds.
I take two homeopathic remedies for fibro - Rhus Tox and Arnica. Major relief for me. I would highly recommend seeing a homeopathic dr., of course have your onc./GP okay it. My GP has been so impressed with my homeopathic dr., she has sent a number of her patients to her for various reasons that she cannot help with conventional medicine (things like weight loss, help with tapering off anti-depression drugs, etc.)

I also find Epsom salt baths and ibuprofen (occasionally for me) help.

all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 08-19-2015, 10:08 PM   #6
Becky
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Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
Re: 5 years out - Chronic Pain

A friend has this induced by chemo. Lyrica helps her. Maybe it can help you.
__________________
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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Old 08-20-2015, 07:00 AM   #7
jra40
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Join Date: Mar 2011
Location: Pittsburgh, PA.
Posts: 260
Re: 5 years out - Chronic Pain

Thank you all so much for responding - this website and all the support has been such a blessing through my cancer ups and downs! I hired a new concierge doctor yesterday (a new practice popping up in my area) and he was very diligent in listening to all the issues I am having. He had already accessed my medical records, studied them, and was ready to go with a plan of action! He is looking into several things so I'll keep everyone posted on what we find out. Hoping for some relief from the pain finally!

Jessica
__________________
11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
8/4/15 - Hysterectomy & bilateral salpingo-oophorectomy. Due to large fibroids. No cancer!
8/8/15 - Started Arimidex
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Old 08-20-2015, 07:47 AM   #8
Carol Ann
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Join Date: Dec 2013
Posts: 1,045
Re: 5 years out - Chronic Pain

Great news, I am so glad you are getting help!! Keep us posted!

Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 08-22-2015, 03:06 PM   #9
Mtngrl
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Join Date: May 2011
Location: Denver, CO
Posts: 1,427
Re: 5 years out - Chronic Pain

Jessica,

I have developed a brand-new theory that chemo might bring on "MCS," or multiple chemical sensitivity. A lot of things that cancer survivors report are identical to MCS, including "chemo brain."

Watch this video: https://www.youtube.com/watch?v=aJuBuXXMaiA

It might not apply to you. It certainly ties everything together for me. I have had several significant mold exposures since my diagnosis. Most recently, I was sleeping in a bedroom with a toxic "bloom" of mold in the week I started back on a taxane chemo.

Avoid fragrances. Get an air purifier with a HEPA filter. Get a vacuum cleaner with a HEPA filter and use it on everything. Maybe wear a respirator with a P-100 filter when you clean. Get a good range hood and use it every time you cook. Make sure all your cleaning products are unscented and "green." Use unscented laundry detergent, body wash, hand lotion, etc. Avoid cigarette smoke, gasoline fumes, pesticides, air fresheners, diesel fumes, perfume, incense, chlorine, hair spray, spray deodorant--anything with an odor. Figure out if you have mold in your house and get it remediated.

Eat only fresh or minimally processed foods and make sure you get a lot of antioxidants and anti-inflammatories. Take fish oil. Drink plenty of water.

I hope it helps. . . .
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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