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Topic: joint pain after chemo

Forum: Young With Breast Cancer —

Connect with those under 40 who have been diagnosed.

Posted on: Jul 23, 2007 02:11PM

yardsale wrote:

Has this happened to you? I am 38yr; 35yr @ dx. My chemo was 4 dose A/C, then 4 dose Taxol. Each treatment was followed by Nuelasta & Procrit shots. During my Taxol treatments (2yrs ago) my hips hurt like I was wearing a lead belt. The pain was the only reason I missed work. Well now, 2+ years later I still have hip pain. It bothers my 2-5 times/month to where it affects my activity. Haven't found a good pain reliever either. I thought I had heard of other women with this same joint pain last year or so; now I'm digging for some more info.

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Jul 23, 2007 04:11PM shirley58 wrote:

i had 6 tac treatments, finished the last one about 14 months ago, had some bone pain during all this time..but its gotten worse these last few weeks, will see my oncologist next month, probably do a bone scan ,hope this is just arthritis,.

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Jul 23, 2007 06:01PM thomcat wrote:

yardsale - I had the same chemo cocktail as you along with the Neulasta & Procrit. During my Taxol txs, my back was achy from time to time. I finished chemo on 3/16/07 and was feeling great until about 3 weeks ago. That achy back pain is plaguing me again. I've had two bone scans - one at dx (9/06) and another upon finishing chemo - both were negative.

I'm on Tamoxifen and Zoladex - I'm wondering if this is contributing also.
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Jul 23, 2007 06:51PM luvmyhunny wrote:

Hi all,
I also had AC and Taxol that I finished in May. I had lots of bone pain especially with the Neulsta shot. I am now taking Tamox. and I do feel that the lower back pain has returned. Also some headaches and I think the Tamox is making the depression a little worse. Anyone else?
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Jul 24, 2007 10:19AM dawnsie wrote:

Hi there-

I had horrible wrist pain during chemo and I still get it, 6 mos post chemo. I get back pain from time to time and now my arm has been hurting for over a week. I will be seeing my oncologist Friday and will mention it. I tend not to worry about the wrist pain because I know it is from the chem,neulasta etc. But the other pains always scare me!!
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Jul 24, 2007 10:54AM sierra03 wrote:

I am 2 1/2 years out from chemo and radiation. With the same chemo you had. I have real bad hip, back, arm, wrist, foot pain. It has never gone away and seems to be getting worse. I have had all the scans and MRI's with nothing showing. Except a little bone degeneration. I never had any of this before chemo. I think it is the Taxol that gets us. I take vicodin once in a while just to have a few hours of relief.
Well this is not encouraging news to anyone is it.
Sierra03
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Mar 2, 2008 02:00PM denisesummersmumm wrote:

I am 57 years old female.  I finished chemo in July and was delighed and feeling great.  I starting playing sports again, play on a team and was happy to be back.  I have been noticing pain in my hands and wrist that is starting to be debilating.  I have a pain in my neck as well, making it difficult to entirely turn my head.  I am 7 months out of my treatment and starting a new phase where I'm worrying about these symptoms more and getting down about it.  I'm at this site to see if joint pain is an after effect to chemo?  dsm

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May 24, 2008 12:19PM waterbaby wrote:

I'm 47 and it will be 3 yrs. in Aug. since I finished my last treatments of chemo and radiation. I had 4 rounds every 2weeks of A/C and 38 rad. Including neulasta and annaset (?) shots with each treartment. I still have pain issues. I'm on Effexor and now Lyrica. I thought that by this time the pain would be gone, but I'm now wondering if I'm stuck with it. My neck, hands, wrist and elbows are the worst. There is a website called "Chemo sucks" that's how I feel along with everyone else I'm sure.

At least I don't get the electric shocks in my feet any longer. There were times sitting at my desk at work I thought I would jump out of my seat. They are now down to occational dull ones. As more time goes by I'm hoping the rest will go away....

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Jul 4, 2008 02:22PM lisadel wrote:

im 50,i just finished 5 weeks of chemo/radiation....i had a stage 2 anal carcinoma......about 4 weeks into recovery i developed headaches for 1 week straight and severe muscle and joint pain...thought it was from just lying around doing nothing...now its been 2 months with everyday my body aching from head to toe....thought it was lyme disease and blood tests confirmed positive for lyme....a infectious disease spec says its just the antibodies in my system from being bit last year........he says it could be fibro myalgia....they don't know.....i truly believe it is from the chemo distroying my tissues.............................and there is no pain reliever that helps,tried percocets,vicadan,etc.........

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Aug 28, 2008 07:01PM peachwater wrote:

I have always had joint pain---but after chemo---before it rains----it hurts a little worse than before. Definitely makes you wonder......but my doctor told me I would get aches and pains and may jump to conclusions immediately and to recognize those feelings when they came for what they were----fear.

           Barby

Dx 3/6/2008, IDC, 1cm, Stage I, Grade 2, 0/8 nodes, ER-/PR-, HER2-
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Mar 22, 2009 02:11PM ppolperson wrote:

I was diagnosed with breast ca in 2004.  Did mastectomy, did chemo, doing Arimedex.  One more year to go on Arimedex.  I have had and still do have significant lower body joint pain...mostly ankles.  Worse after sitting or sleeping.  First 5 minutes up are pretty painful...I hobble like I am ninty years old...then do okay.  Better if I keep moving... no good remedies.  I am 54 y/o and figure it came from chemo or Arimedex or both and at this point I am stuck with it...but alive.  Advil helps as much as anything and it's not narcotic...I say keep vertical and moving girls!

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Mar 22, 2009 02:15PM ppolperson wrote:

I agre...I think the chemo does do something to the tissues...I had a problem with getting tendonits as well as joint pain after chemo...esp when I tried to workout and get back into shape.  I think it messes with the elasicity of connective tissue like tendons etc...still waiting to see if things stay the same or get better...four years later! 

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Nov 11, 2009 02:04PM RBurton wrote:

Hello everyone,

Ladies: I hope this will work for you, it was a miracle for my wife who has regained full activity and the muscle and joint pain is almost completely gone! 

My wife was diagnosed with IDC in February and has completed chemo and rads as of last month.  During taxotere/cytoxan she began having joint and muscle pain that was very debilitating.  It would come and go suddenly.  Any sitting or being still seemed to make it worse.  Her oncologist prescribed the usual: first percocet then loritab after he became wary of continued use of percocet.  Her oncologist said it was unusual to have this pain so long after chemo so he referred her to pain management at out local hospital.

She went to see her family physician last week and he prescribed Cymbalta which is used to treat fibromyalgia.  The first day she took it her pain all but vanished.  The next few days were touch and go but the doctor had warned her the full effect would not come for a week or so when taking the drug.  Now a week later she is (Thank GOD and thanks to her regular physician) back to her old self.

I hold no grudge against the oncologist.  He is a great doctor and very sympathetic.  However it seems that doctors get used to their routine and have so much to deal with that they rarely take the time to do any research about symptoms and side effects which are said to be "rare".  I don't know the impact of taking the drug during chemo so make sure to ask your oncologist.

While I'm at it: if any of you have had eye problems such as uncontrolled tearing or irritation of your eyes during taxotere/cytoxan:  After the first infusion of tax/cytoxan my wife's eyes started watering uncontrollably and it continues to this day.  Now she can't wear eye makeup.  After much research I found documentation that taxotere and cytoxan can damage the tear and oil ducts in the eye causing stenosis: Canalicular Stenosis.  Irreversible.  The articles I found mentioned the possibility of having an ophthalmologist insert silicone tubes into the tear ducts asap after the symptoms appear to prevent further damage.  As far as I know the only way to fix it after the damage is done it is to have an ocular surgeon permanently surgically bypass the tear ducts with glass tubes.  We have tried everything under the sun and nothing works so we will be considering a visit to an Oculoplastic Surgeon.  If you notice excessive tearing make sure to tell your oncologist to look up this info for himself.  The studies have been out there for about 10 years.  I have found that many oncologists including our own simply dismiss the symptoms as rare instead of exercising due diligence with a bit of research.  I found the info using the ubiquitous Google.  Some doctors get mad when their patients presume to do their own research, especially on the Internet.  Don't let it bother you.  It's easy to find a wealth of respected research and info on the Internet but most doctors wouldn't be caught dead using a Google search to look up symptoms.

One more issue:  Radiation burns:  My wife had 6 weeks of rads.  As predicted her skin began to get red at the 3rd week, then it started to burn.  I did some extensive research (again) and found many advertised products.  I decided to make my own using a dozen natural ingredients used in many popular salves and ointments.  My wife started slathering on the stuff after every rad dose and kept it on at night.  Within days the redness subsided and disappeared.  We were amazed and so was her radiation oncologist who had never seen anything like it.  I have heard stories of BC patients burning so bad the skin sloughed off in places and nothing seemed to help.  Other BC survivors we have talked to have seriously damaged dimpled, wrinkled,mottled purple and red skin for up to a year or more after rads.  My wife finished rads a week or so ago and her skin looks like she never had the treatment.  I will be doing more research and plan on providing the salve to our local cancer radiation center for free to make sure my wife's result wasn't a fluke.  If it works with others the way it did with my wife we'll be providing it for BC patients to use and ALL profit will go to cancer research.

Ladies/Caregivers and especially HUSBANDS!!!:  You must be an active and participatory advocate for your wife's health!!  Don't let your doctor discourage you from asking questions and doing research.  My blind faith in my wife's initial doctor (who we basically fired after he recommended watchful waiting, allowing her tumor to double in size), was misplaced.  He failed to offer her the option of a needle biopsy at first and later when it was too late he preached against the simple and proven methodology of core or needle biopsy since he believed in the antiquated view that it will "seed" and spread cancer if it was present.

He also got mad at me for asking questions and doing my own research.  His unprofessional conduct and lack of belief in current technology resulted in my wife having 12 nodes positive out of 20.  Had he done a needle biopsy when she first pointed out the lump to him the year before it would have been a much easier road for my wife.  Remember, doctors are not infallible and sometimes their egos can hurt your chances.  If you feel any resistance to questions or concerns, get a different doctor.

God Bless you all and keep you safe and healthy. And by the way, take it easy on your caregivers, we get frazzled and discouraged too. Even though you are the patient, we are as terrified and concerned as you are and many of us (me included) actually feel the pain and sickness the same as expectant fathers have sympathetic labor pains.

Feel free to email me anytime, we have been through a lot as you all have and we are willing to help anyone in any way we can to make it though all this.

RBurton  hdsledge@gmail.com

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Nov 11, 2009 06:46PM navygirl wrote:

WOW. I have been walking around thinking I was a freak of nature because I have had nothing but pain since I finished chemo. I had horrible joint and muscle pain during chemo, it skyrocketed when I was done. I have "remissions" as I call them - where the pain backs off to a point where it's more annoying than painful. But I have not been pain free. I did 4 dd a/c, 12 taxol/herceptin, then 5 months of weekly herceptin because I couldn't tolerate the 3 week dosage. At times I have severe pain in my shoulder, down my arm and into my hand on one side, and lately the pain in the right shoulder/arm has been increased. My back always hurts, I get migraines. I feel like I won the battle but lost the war. I did find a pain med that worked well for the first week...then I became very anxious, stressed, short tempered - just like when I was on steroids! I hope this goes away and is not going to be my trade off being rid of the cancer.

life is short, play hard
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Nov 24, 2009 10:18PM RBurton wrote:

Followup:

 My wife was prescribed Tramadol (non-narcotic) by her pain mgt specialist and it seems to work very well.

 So now she only has to take Loritab once in a while.  Looks like the combination of Cymbalta and Tramadol is the key at least for my wife.

She feels pretty good most of the time now although the fatigue is still there.  So far we are 3 weeks out from rads and several months from last chemo.

Ask your pain mgt spec or oncologist if he/she is willing to try either of those for you.  Good luck!~

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Dec 31, 2009 08:39PM waldengoddess wrote:

Wish me luck!

I'm off to my family doctor on Wednesday, to see if there is ANYTHING that she

can help me do for this #@@$%%^.

I've been doing Savella mixed with Paxel with no results but able to do housework

in the middle of the night. (Keeps me awake for days and my heart pounding out of

my chest) All these anti-depressants...how come I'm not happy?

I've read all of your replies and and pumped up ready for her and the out come!!

Thanks for all your input! 

shannon
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Jan 1, 2010 10:40PM lynn1575 wrote:

I have just completed 4 weeks of my 7 weeks of radiation and am interested in the salve you made.  I have been using Biafine cream, vaseline, and an Aloe vera cream.  They help some

but my breast skin is very red and uncomfortable.  The radiation oncologist just shrugs and

says "That's normal."

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Feb 4, 2010 12:27AM livvienigelmom wrote:

Yardsale-

I had taxotere and cytoxan 4 cycles from July to October 2009. I had brutal hip pain too and stiffness all over. I still have hip pain and this annoying stiffness. I'm trying naproxen otc as I hate pain killers. Also, I have tried Tiger Balm which stinks but its a bit of a relief. Onc and radiologist and nurses all say it is temporary and I'm thinkin that's bs the more blogs I read. Here's to hopin it will ease off and go away! Hugs to all.

Dx 6/1/2009, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR-, HER2-
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Feb 4, 2010 12:53AM StillVerticle wrote:

I had the TC combo in chemo. The pain in large joints continues to be profound. I finally went to a pain management specialist.He is doing a great job of keeping me functional and bringing pain in a range where I can tolerate it. But, I have had to make many behavior changes. I was a gonzo saltwater big game angler and often out in the Gulf Stream catching monster fish. I can no longer do that. It is such a loss!!! The hip, pelvic and spine pain (feels like my spine is being pulled out of my back and it is a throbbing pain. I am told by my docs is from the Neulasta. Then I began having shooting pains in my hands and feet (like stabbing). My doc simply said, oh it's likely you have peripheral neuropathy" a se from chemo, with no explanation nor plan for how to treat it if it really is PN. Pain is so bad when I wake up I dread crawling out from under my cozy bed. I have to 'stretch' to get back into my skin every day. Then try a short walk with my dogs. Such a B*tch as my whole life has changed to accomodate pain and fatigue right now. Not much encouragement, but you are not alone. {{{{{SOFT HUGS}}}}} SV

Good Girls go to heaven; Bad Girls go everywhere-Mae West! StillVerticle Dx 10/22/2009, IDC, 3cm, Stage IIIA, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Mar 24, 2010 03:54AM Annie1066 wrote:

Please, what is the salve you recommend for radiation burns? Scared of radiation, and have to do it. Would be grateful for anything that can help. Thanks.

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Apr 24, 2010 03:53AM tmswrite wrote:

New here because I was looking for ideas for upper arm pain after radiation. Various images show nothing, waiting for labs and ??? In a strange way it is educational to see that so many other women are having problems in treatment and are frustrated; my oncologist's nurse once said I was "unusual." That was after having neutropenic reaction more than once. Thankfully I didn't get a bad infection. They really put us through the mill with this, and of course it's for a good reason -- we will be well. But greater understanding always helps. 

Annie1066: Hope you are doing well. The skin problems I had were helped by these, all provided by the radiologist and staff: Radiaplex to start, later the same w/ Lidocaine, later an Rx cortisone cream and Rx silver sulfadiazine. I kept using whatever worked and put on as often as possible when it got bad. Benadryl pills and pain-killers also were part of what helped me for a couple of weeks. Once the creams/meds are on board, do something you like -- I watched "Jeopardy" and "Chuck" with my daughter. 

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Nov 18, 2010 11:52AM Martizz wrote:

Hello there,

I had the same thing after finishing chemo, I couldn't walk in the morning after waking up wihtout pain and this chinise accupuncturist told me to soak my feet in very hot water, as hot as you can handle upto the anckles and within few days the pain had gone have never returned.

hope it helps you  

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Nov 20, 2010 09:12PM yardsale wrote:

3years later I find my old pain post.  Alot has changed...2009 I was dx with DCIS in my "good" breast!  When it rains...2 surgeries & 30 rads & I'm here to say cancer sucks & my hip pain is off the charts.  It has affected my mobility & daily activity.  I don't see an onc anymore & my fam doc has deer in the headlights reaction just dealing with a young cancer girl-41 yrs old.  Anyway my vicodin has quit being effective & he wants me to do PT.  I don't think I can have someone twist my leg & hip around!  Doc is worried about drug addiction.  I'm not, I'm worried about working & playing & sleeping.  For pete's sake I've had cancer twice. I'm not even an addictive kind of girl.  I'm going to have a fresh x-ray on Monday (2 yrs ago x-ray & mri were "unremarkable") and then get a pain clinic referral.  Isn't it obvious that poison (aka chemo) is going to @#$% us up!?!?

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Dec 13, 2010 05:01PM kimeya wrote:

Wow...every time I think I have something weird that has to do with something altogether different than breast cancer, I come to this site and find SO many other women who've had the SAME PROBLEMS!!!!  I thought my terrible hip pain could only be related to some kind of sciatica, kidney infection, some internal bowel obstruction, gas...Who would have thought it could be a chemo side effect!  I completed my chemo treatments in early September, had the lumpectomy surgery three weeks later, and just last week completed my final round of radiation.  I specifically was searching to see if the radiation could have - weirdly - caused a problem that would make my hips so sore that it's hard to get out of my seat, the bed, etc., but based on these discussions, it sounds like it very well could be from the chemo.

I'm concerned but also not so concerned about this.  I have multiple sclerosis, so every day even before I had to go through all the breast cancer boo-boo was about some weird pain, numbness, or whatever.  In a strange way, I'm used to some of this; however, this hip pain is a new one on me.  It's very much like the fatigue thing.  Fatigue is another MS thing so, when I heard it was a chemo and radiation side effect, I thought - "I got this."  But, whoa baby - if they cold have bottled up the fatigue I had into some kind of drug, it would have been enough to down an elephant! 

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Sep 7, 2011 12:46PM treadleskate wrote:

I realize this is a two year old post, but this along with the others really has helped. I finished chemo and have surgery coming up.  I complained of hip pain shortly before my 3'rd and 4th chemo.  chiropractic helped alot.  Then I started with calcium and vit D which also helps.  But mainly knowing it is probably just the chemo from reading this website, has relieved my fears, which in turn lessens the pain.  I have a pre surgery pet scam this Friday and I guess I can relax after that. 

Thanks alot fo all the good advice in this post and your wife is lucky to have you.  I have my son who is very busy and no family around to help but some good friends. 

Marianne

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Sep 7, 2011 08:18PM youyourbestthing wrote:

Does anyone know why chemo gives us joint pain?

Alyssa /"Claim what is yours. You belong anywhere on this earth you want to." Tina McElroy Ansa Dx 4/2010, IDC, 2cm, Stage II, Grade 3, 0/6 nodes, ER+/PR+, HER2-
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Oct 20, 2011 10:56AM nanme wrote:

my final breast cancer chemo was march 2, 2011, and my final radiation was may 6, 2011.  it was all hell.  the extra pain brought on by the neulastra was intense and at times unbearable, but i made it.  my doc started me on my 5-year-pill in late may.  first was arimidex.  since i already have fibromyalgia, the doc said, "do not try to tolerate more pain.  you don;t have to live with it!"  sure enough, exteme joint and especially hip pain came.  stop that pill.  next was aromasin, which also caused extreme joint and hip pain.  that hip pain is fierce!  stop that pill.  next pill was tamoxifen.  no hip pain!  i still get hand pain and even occasional arm pain which i guess are by-products of chemo.  i still have my fibro pain, which never stops, but i had that before.  now i only get the hip pain if i walk too long.  i think all that chemo crap did something to us that is irreversible.  anything that can kill cancer and make straight hair explode into curls has to be potent!       nancy 

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Nov 16, 2011 06:59AM Harvest wrote:

I had my second a/c, and a week later "ouch", my hip, the bones inside my bum hurt so much, I didn't sleep all night, it's a shooting pain....and it all started with my right foot, I couldn't put my heel down, that lasted a few hours, but in the evening... Arggg all because of the Neulasta? It seems like standing up helps a little. I am so tired, add to it the sleepless nights!!!I don't know what to do to alleviate...(2 more a/c followed with a shot of Neulasta the next day & 12 more treatments of T...).
I will call the hospital today... But does anyone have some exercises? Any salve I could use ( trying to stay away from other meds, unless it's an acceptable natural way?
Thank you! ( hoping it will disappear today?! :•) )

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Dec 2, 2011 02:08AM mgb103 wrote:

Nancy

My Story is exactly the same as your I to had my last chemo is march 2011 and my final radiation was on or around the 6th of may. I am also on Tamoxifen but i get heaps of hip pain. I am 44 but may as well be 80 the way it make me walk. I walk every day early and apart from being stiff at first can do about 5km with my dogs. Its as the day goes on and if I have been sitting for a long time. I would love to know if this is left over from the Chemo or if it is the Tamoxifen. I also have a bit of pain in my shoulder and down to my wrist. i am sure you are right about the chemo anything that strong is sure to knock us around. Good luck with it all. strange to see someone else with the same dates as me and also wait for it I have a twin sister who's name is Nancy.

Jayne

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Dec 23, 2011 03:04AM albs wrote:

Hi everyone. I was diagnosed with triple negative breast cancer almost 2 years ago. I too had AC and taxol. I have had pain all over my body in my joints and bones. Stiffness in muscles too especially in the morning. I believe the pain is caused from nerve damage especially from taxol. I try to ignore the pain but it has changed my life! If it is nerve damage it is irreversible. Some have suggested taking neurontin but I do not like taking medications. I too have felt that my oncologist ignores the pain but she has never experienced chemotherapy and doesnt truely understand how it effects us. I feel sometimes that if I had known how much chemotherapy would effect me then maybe I would have chosen not to have it! I do not feel that side effects are explained very well to patients prior to treatment. I didn't understand how it would truely effect me and I was once an oncology nurse! I pray they find a better treatment soon for breast cancer (like a vaccine) so others don't have to experience the awful side effects of chemotherapy. It definitely changes your life forever!

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Dec 23, 2011 09:37AM hydeskate wrote:

I had Abraxane and AC, really didn't have any joint pain until after I finished the treatment.  My ONC was great she listened and ran a bunch of test to rule out the cancer coming back.  I decided to write everything down and when it started to hurt and emailed it to her, after she ruled out cancer she looked at me and said I need to send you over to the Rheumatologist.  Low and be hold he runs a few test and BAM I was told I had Sjogren's Syndrome an auto immune disorder, unfortunately there is no cure.  We treat the symptons as they flare up, I am taking Oxy, muscle relaxer and Naproxen for the pain, and making sure I get enough rest.

heidiy13.blogspot.com/ Chemotherapy 3/8/2008 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 10/25/2008 Adriamycin (doxorubicin) Surgery 2/12/2009 Lymph node removal: Left; Mastectomy: Left, Right Radiation Therapy 7/1/2009 Breast, Lymph nodes Chemotherapy 8/4/2009 Abraxane (albumin-bound or nab-paclitaxel) Dx IDC, Left, 1cm, Stage IV, metastasized to liver/lungs, Grade 3, 2/20 nodes, mets, ER-/PR-, HER2-

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