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Old 03-18-2014, 02:55 AM   #1
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Diagnosed 1999, no recurrence. Chronic pain biggest problem.

I participated in one of the clinical trials with Herceptin for adjuvant therapy, enrolled in 1999. Got 4 courses of Herceptin and Taxol (or Taxotere, I don't recall which one now), then 4 courses of AC, followed by radiation and one year of weekly infusions of Herceptin. I developed severe joint/muscle pain from the Herceptin and Taxol, which improved, but never resolved. Still taking extended release morphine, oxycodone, and ibuprofen. Had a hard time getting my providers to believe me about the severity of the pain at first (couldn't walk without medication), and that it is chronic.........something about that Taxol plus Herceptin. I didn't find much about chronic pain in the literature.
Grateful to be cancer free if not pain free!
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Old 03-18-2014, 06:14 AM   #2
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Re: Diagnosed 1999, no recurrence. Chronic pain biggest problem.

Have you seen a rheumatogist about the joints? Maybe it is something different or maybe it is fibromyalgia. My girlfriend got cancer about 3 yrs before me. Not Her2 but got 4 rounds of AC and 4 rounds of taxol. She had lots of residual pain and was diagnosed later with fibromyalgia and is on Lyrica and doing well. I am not saying that's whats wrong with you but certainly there has to be something that can help you versus narcotics. Seek out opinions with a rheumatogist who specializes in joints. You didn't mention if you are on an AI (Arimdex, Aromosin or Femara). These cause joint issues too.
Kind regards


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 04-07-2014, 03:40 AM   #3
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Re: Diagnosed 1999, no recurrence. Chronic pain biggest problem.


Sorry for your suffering.

I've found that exercise (walking is the best - if you can not walk, try to get the PBS chair exercise video) works best for pain relief.

Exercise increases the release of endorphin, which is a natural pain killer and a 'happy hormone'. Plus it will help strengthen the bones and prevent osteoporosis.

Contact your doctor and get a referral to physical therapy also should help.

Sending you good vibes.

ps. If you are taking pain meds, be sure to eat a high fiber diet or drink a cup of the fiber supplement everyday. And remember to drink a lot of water/juice. Many pain medication has the side effect of causing constipation.

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Old 04-07-2014, 04:13 AM   #4
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Re: Diagnosed 1999, no recurrence. Chronic pain biggest problem.

Thanks for the info.....have done that.....I believe part of the pain is nerve damage, but yes moving about always helps. Been on pain meds that constipation is never a problem. The problem is getting the medical providers to 'believe' that chronic pain can be caused by chemo.....Claudia
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Old 05-18-2015, 03:09 AM   #5
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Re: Diagnosed 1999, no recurrence. Chronic pain biggest problem.

I was a very young 47 year old woman when I was diagnosed with Stage 2A metastatic breast cancer positive 1 lymph node and 2.5 cm on right breast, HER 2+.

I now exercise every day for 30 minutes on an elliptical. I take 2 Glucosamine; 2 CoQ 10 (100mg each) a multi-vitamin and my tamoxifen daily.

I have 3 weeks of radiation left and 15 sessions of Herceptin.

Chronic pain is real, I am very sorry for your pain. I too suffer from joint pain and stiffness. I hope and pray that you will get a MD opinion on the pain and find other supplements to help alleviate your pain. My glucosamine and CO Q 10 has been working great. I sometimes have to bite down on the BIG STICK to get through my minimal workout but I finish what I start.

I hope this helps.......
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Old 05-18-2015, 07:27 PM   #6
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Re: Diagnosed 1999, no recurrence. Chronic pain biggest problem.

I was diagnosed at 45 soon to be 47..you will see my regimen below. Bottom line I to suffered from EXTREME muscle and joint pain about six months into herceptin ... Thank goodness it lasted for only about 4 more months ( felt like I was 90) .. I was fortunate that my doctors believed that I was having this pain but would not definitely say it was chemo related hmmm. Anyhow the joint pain resolved but I still do get evening muscle aches that I now use ibuprofen for. The pain has gotten much better . I hope in time it will get better for you.
]11/13 Dx IDC left breast
11/19/2013 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
03/05/18 Vinnie Myer 3 D nipple tattoos complete.
11/19/2018 5 years since Dx of IBC stage 3c remain NED.
11/19/21- 8 years today I officially remain NED and in 12 days I will be having a lymphnode transfer to help decrease some mild lymphedema! Still working, living life and soon to see a day I thought never would happen and that’s becoming a grandparent June 22nd.
11/19/2023 - 10 years since diagnosis and I remain NED
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Old 05-26-2015, 08:02 PM   #7
suzan w
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Re: Diagnosed 1999, no recurrence. Chronic pain biggest problem.

I, too, suffered extreme joint pain during herceptin. I needed help getting out of a chair, even walking was tough. Never got a good explanation...Even now, almost 10 yrs out, my knees are really weak...hmmm
Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
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Old 05-26-2015, 11:38 PM   #8
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Posts: 83
Re: Diagnosed 1999, no recurrence. Chronic pain biggest problem.

I believe in your pain! I, too, suffer from chronic pain. It's everywhere. Mainly I have terrible pain on my surgical side from rads. I see a lymphedema specialist who massages my scar tissue and relieves my lymphedema pain in my arm. I also have a machine that helps with the lymphedema. I also take Celebrex for my arthritic neck pain. And lyrica for my neuropathy. I'm 41. I feel like a mess some days. I had taxol, too.
June 2013 DX Stage 3 Idc, rt breast, er/pr-, her2+++
PET/CT/Brain MRI clear
ACTHP until Dec 2013
BMX Dec 2013
28 Rads Feb 2014
Exchange surgery June 2014
Herceptin end Sept 2014
Headaches start Oct 2014
CT body clear Nov 2014
Brain MRI 4 lesions Nov 2014
SRS via LINAC in Dec 2014
Rt side infection, hospitalized, lost right implant on Jan 1, 2015
Jan 14 2015 MRI brain lesions shrinking
Jan 27 2015 Re-start herceptin every 3 weeks
Feb 2015 CT/PET Body clear
Re-start Lymphedema treatment April 2015
Breast MRI clear April 2015
Brain MRI April 2015 - shows everything stable, nothing new (whew)
CT scan June 2015 - clear
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Old 07-18-2015, 09:10 AM   #9
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Re: Diagnosed 1999, no recurrence. Chronic pain biggest problem.

Claudia, thank you for being among those to provide better treatment! In 2002 when I was dx'd I knew nothing about the trastuzumab trials but asked my onc if I could participate in clinical trials. There was only one I think that I would have qualified for and I didn't know about it, and he wasn't responsive, so I never had trastuzumab. I too remain without recurrence.

Suzan, the loss of muscle tissue + the permanent struggles with slower metabolism and weight gain have made my knees and ankles weaker too. I was offered steroid shots but turned them down. For a while (in trying to cope with the sudden onset of weight gain that so many younger medical providers think can just be addressed with "diet and exercise") I was jumping rope for 30 minutes a day, but my ankles and knees could not take it. I am doing PT for that, with a small local private PT who is very good, and it is helping bit by bit. I will never be able to jump rope like that again, but the PT is strengthening what muscle I have and it is reducing the knee pain.

Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
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Old 07-18-2015, 11:31 AM   #10
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Posts: 202
Re: Diagnosed 1999, no recurrence. Chronic pain biggest problem.

I have had some arthritis pain for quite some time and I noticed that when I was going through chemo the pain was not present, however, once I was off chemo the pain returned with a vengeance. I talked to my onc and he said that was really common. Chemo is actually used to treat some types of arthritis and once the chemo is stopped the pain returns at an increased level. I still have chronic joint pain and try to move about as much as possible to help with it.
Diagnosed June, 2006 HER2+++, ER- PR-, Grade 3, Stage IIB. Modified radical mastectomy, radiation, chemo, Herceptin, Tykerb 1 year. [*]In remission until 2/2010. Small tumor detected on chest wall during routine scan. 2/2010 surgery to remove tumor, started Herceptin/Tykerb, follow up radiation. [*]12/26/2010 - Off Tykerb due to allergic reaction[*]12/16/2014 - Have continued on Herception for almost 5 years now and remain NED. Discussion with onc re adding Perjeta to the Herceptin as another way of preventing recurrence. Still in discussion phase. 12/26/14 Onc applying for approval for Perjeta.
Perjeta approved and I received one infusion. It had an immediate impact to my lungs and I experienced difficulty breathing so.....I'm going to be sticking with just Herceptin. Still looking for a good vaccine program to enroll in.

Debbie K
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chronic pain

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