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Old 07-19-2007, 08:55 PM   #1
Sherryg683
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In constant pain

I hate to complain and really have no one else to talk to about this because no one here around me seems to really care or wants to hear it any more but I am so tired of being in constant pain. I had a bad shingle outbreak in January and I guess I am one of the few who the pain lasts for longer than 5 weeks. It's been over 6 months now and I still hurt terribly. My right side burns so bad and it radiates into my head like I have thorns in my skull. I also have a spot in my stomach area that has continued to hurt real bad since chemo. I have had my gallbladder checked and nothing there. I have a few liver hymangiomas (or so they think) but they are very small and have never lit up on PET so my oncologist is saying it's nothing...it still hurts like crazy. And to top it off I threw my back out and can hardly walk now, my right leg is numb. And, in the last month my dang jaw has started popping and locking up and hurts, I guess I've developed TNJ..I'm just about at my wits end. I have been to a neurologist for the shingle pain and and several other doctors and they say nothing can be done except to take pain pills, it just has to run it's course, it's just been so long and draining. I try to limit the Loritabs to one a day, I just hate depending on pain pills. Of course I always figure it's the cancer. I guess I just need a pep talk, to keep hanging on here. If it weren't for my little girl, I might just want this to all be over. I mean how long can you hurt. Any suggestions other than pain pills? Sorry I'm so negative tonight, I just hurt terribly and no one here seems to give a damn...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

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Old 07-19-2007, 09:09 PM   #2
sassy
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Sherry,

I'm so sorry you are dealing with all this. Please know you can come here to vent any time. I really don't think those who have not been thru cancer and treatment can understand the physical as well as the psychological trauma that can continue.

I'm not sure if this would be applicable in your situation, but I have been taking Neurontin for several months and it has helped tremendously with post surgical/treatment pains. I feel much better physically, and this has had a positive effect on my mental outlook. Neurontin is just beginning to be more widely used for women with BC.

Hope this helps, and hang in there.
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Old 07-19-2007, 09:21 PM   #3
Lolly
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Sherry, my mother-in-law has been dealing with shingles pain for months also, and she finally found some relief when her neurologist prescribed Amitryptelene. It's known as an anti-depressant, but it's also used for nerve pain such as from shingles. Another drug in the same class is Nortriptyline, and it is also supposed to help TNJ.
Ask to see the neurologist again, and ask about these medications. The Amiltryptelene has really helped my mom-in-law, but she has to keep taking it or the pain comes back. Sometimes, I'm sorry to say, she's in pain anyway, but it's not as bad if she takes her meds, and since it's not a "pain" med she feels better about taking it long term.
I hope you get some feedback from the neuro about other options, as I know how painful this condition is.
If your current neuro doesn't help you, can you go for a second opinion?

Hope you get some relief, and you know we care so come here to vent anytime!

<3 Lolly
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Old 07-19-2007, 09:45 PM   #4
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Sherry,

So sorry for what you're going through. One thing possible about stomach. I had terrible pains in stomach and had my gall bladder checked with sonograms a few times. They found nothing. I persisted and finally someone found the stone. It was located higher up than usual. When it was removed, it was completely diseased. Anyway, the pain lasted maybe four months until they
confirmed that it was my gall bladder. I knew it all along, as gall bladder disease runs in the family. Not saying yours is gall bladder, but perhaps one more check.

I also have TNJ. I use self-hypnosis to relax the jaw and it helps a lot. Self-hypnosis might help with some of the other pain as well. I was taught the procedure years ago by a doctor in New York, but you can probably find someone reputable in your area. It takes a while to get the hang of it but it does work for a number of things.

Hope you feel better soon.
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Old 07-19-2007, 10:18 PM   #5
Alice
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Talking

Shingles can be excruciating for a long period of time for a person that has been healthy and has not had a major illness. My Husband had shingles as a teenager and for years had residual pain. I think we all need to let you know that you are not being a whimp over this, that it is quite painful and we understand and suport your feelings of needing to vent! So go for it!!!
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Old 07-19-2007, 10:47 PM   #6
Jean
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We care.....and always will...

Dear Sherry,
I felt so bad when I read your post....
Sometimes those around us just don't realize what we go through.
Lets face it before cancer most of us were going through life pretty clueless. Trivial things were once important. Not anymore, we know
better, those around us sometimes just don't get it.

So that is when you come here...

Shingles are the worst - my sister had a bout
with them and she truly suffered. Yes, it has to run its course but
maybe you should consider taking some pain meds for it. Your
immune system maybe having a harder time fighting them off.

Try not to let it get you down, I know, easier said then done.
Just hit the board and we will cheer you...
and send you lots of TLC

hugs,
jean
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Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
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Old 07-20-2007, 12:27 AM   #7
chrislmelb
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Sorry to hear you are having such a rough time. Re TMJ, i can get into trouble with that when i am tense. That you need to do is constantly open your mouth and then let it flop back to relax. Just always be aware of clenching your jaw. You can break that cycle.
Good luck
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DX Sept 03 age 40 Stage 2B Grade 3 mastectomy (after 2 prior breast conserving surgeries)
"at least" 2.3 cm 3/12 nodes ER+/PR+ Her2+++
8 FEC. Tamoxifen then Arimidex. Ovaries out.
"late" Herceptin for 2 years (18months after chemo) on HERA trial. finished Herceptin Nov 2007.
Multiple bone mets May 2012 and now liver August 2012.
Abraxne, Herceptin and Zometa.
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Old 07-19-2007, 10:15 PM   #8
lexigirl
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Hi Sherry,

I am sorry that you are having pain. This is definitely the place to come and share your feelings and complain. I know how you feel about not wanting to mention it to your family. It's always something.

For your jaw problems, if it is TMJ perhaps your dentist could make an appliance to wear when you sleep. You may be clenching in your sleep and not realizing it. Goodness knows we do have reason to feel stressed!LOL

Let your docs know that your pain is real. Don't give up on finding what the source of your pain is. I am sure if it was their loved one they wouldn't give up to they had an answer.

Please know you are in my prayers tonight.

Hugs,
Lexi
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Old 07-20-2007, 06:48 AM   #9
Mary Anne in TX
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Hi Sherry!
I had shingles in March and still have pain also. I do go several days at a time and do ok, but not for long. Same places, same pain in the neck to deal with. I have what seems to be the original pain coming back the last couple of days, so am really watching it.
Sherry, my rad onc told me that the pain meds won't be as effective unless we keep them in our system. If we wait til it's really bad, then our system has to build up again to combat the pain and the medication isn't as effective. She encouraged me to take them like prescribed (what a concept) to get the full benefit. So when I need them, I take them every 4 hours (vicadin) to get real relief.
I get this constant pain across the lower back of my head (maybe neck) that seems to never go away. And the place across the top of my right shoulder (lots of radiation exited there) is constant too. I've been taking more in the last week than I had to for a couple of weeks.
It's awful! It makes me grouchy and a pain to be with. So I take the meds. I figure that if I get hooked on the pain med. I can battle that just like all the other stuff we battle. I'm going to be happy to be around and have some fun! I've got a granddaughter to raise and just can't do it without taking good care of me.
Why not call your doc. and see what they say! Rather than fight the pain, "rule over it, girl"!!!!
I'll sure be thinking about you!
Luv,
Mary Anne
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Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
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
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
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Old 07-20-2007, 07:05 AM   #10
Margerie
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I am so sorry to hear your painful ordeal Sherry! It's hard to be stoic forever if you are suffering. I don't know much about shingles relief, but if I were you, I would be thinking outside the box: acupressure/acupuncture, hypnosis, guided imagery- something besides/ in addition to the pain pills. I also know a few people that had their TMD symptoms relieved by a good physical therapist.

Are you able to eat and sleep well?

I hope you feel better soon.
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Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
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Old 07-20-2007, 07:06 AM   #11
MJo
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I've heard that shingles can be horribly painful. I'm sorry you have to deal with them. Please take care of yourself, including pain meds if necessary. I have TMJ. I clench and grind my teeth in my sleep. Your dentist can make an appliance for you. I've accidentally thrown two away, so be aware. You can also buy a cheaper product called Night Guard in the drugstore. Night grinding can cause you to wake up with piercing headaches, and of course I think it must be brain cancer.
Constant pain can certainly wear you down and make you grouchy and depressed. It helps to vent, and we're here to listen.
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IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
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Old 07-20-2007, 07:08 AM   #12
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Pain in the back..

I can relate. We finally got moved into our house in Denver, the furniture was 1 week late getting here, so we slept on air matteress's for the week because I could not stay 1 more night in a hotel. Of course, my back went out. Finally found a new chiropractor and I am feeling 100% better. I had to make 3 visits and had a theraputic massage that hurt pretty bad, but my back is sooo much better. As for the TMJ, I concur with the other ladies that you need a bite plate. My daughter grinds her teeth at night so her orthodontist made her one. Works like a charm.
And lastly, if you are in pain, and frankly when aren't we, please take something for it. Why suffer in pain? Even before cancer I felt every bit of my 52 years at times. We here all understand that and are hear to listen.
I hope you feel better soon and start enjoying life again.
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Old 07-20-2007, 07:42 AM   #13
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Sherry,
I don't have any experience with the pain, but I just wanted you to know we do care, and want to hear when you need to vent. I'm so sorry you are going through this, and feel neglected at home right now. I will definitely be praying for God's touch on your body right now, and keep on the doctors to find the right combo to help you. Just wanted you to know I will be thinking of you.

Beckie
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1.1 cm tumor
Pre-op x-ray caught lung nodules
6/06 - Stage 4, Her2+++, er/pr-
Mets to lungs(largest 3 cm), liver (largest 5.5 cm), and bones
Began taxotere, herceptin, & aredia
7/06 - radiation to lower spine & left shoulder for pain
8/06 - everything smaller
12/06 - stopped taxotere (toe infections)
5/07 - bone mets advancing
6/07 - add navelbine to herceptin & aredia
6/07 - discovered brain mets (3 in cerebellum, largest 2 cm.)
7/07 - WBR, change to Tykerb/Xeloda
9/07 - targeted radiation
10/08 - started navelbine/herceptin
2/09 - brain mets - targeted radiation
5/09 - mets in liver progressing, changed to Ixempra
7/09 - mets in liver still going, to the brain again, on gemzar now
9/09 - gemzar failed, started Doxil today


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Old 07-20-2007, 07:54 AM   #14
BonnieR
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Sherry, I understand how you feel about the pain medication but it is a treatment, just like every other. To keep a problem in check. There is a great deal of emphasis these days on the importance of pain managment to improve healing and quality of life. And it is essential to keep AHEAD of the pain, ward it off before it takes hold, by taking the meds as prescribed. I have also heard that when taken as required, the medicine targets the pain and is not about getting "addicted".
Being in pain is very depressing and demoralizing. Does your treatment facility have someone you can talk with? Mine offers a psychologist and she has been really helpful.
And we are here....
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Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
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Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
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Old 07-20-2007, 08:29 PM   #15
Sherryg683
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Thanks all, I woke up this morning and could actually hobble a little bit beter. I went to my chiropractor for my back and he usually helps with that. I guess I have always been the type of person that has never liked to take pills, if I have pain..I want to know why and do something to get rid of it. That's why taking the pain pills have been hard for me, I feel like I am just masking the pain and not doing actually treating it, which is a stupid way to think. And you are right Mary Anne, I guess I have bigger worries and battle to fight than taking a few pain pills a day. I took neurontin for about a month and couldn't handle it. It made me totally loopy, I was running into things at Wal-Mart one day and then realized that I couldn't even remember what I had done the day before, I took myself off them then. I am taking cymbalta which is an anti-depressant which works on the nerve system, I can tell when I miss a day. I usually can make it through the day but around 5:00 pm the pain starts becoming intolerable. The Loritabs work well with me and I don't get too groggy, I actually get more energy. I just want to wake up one day and feel like I did before all this. My mental outlook is better today anyway, yesterday was just so hard for me. My son just moved out the house for college and I guess I am just a little depressed about that also...Thank you all for being here for me, not too many people really understand how we feel...which is a good thing I guess. I wouldn't wish this on anyone...sherryg
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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 07-21-2007, 08:49 AM   #16
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Sherry,

I can totally sympathize with you about being in pain. I am in constant pain everyday. It is not related to my breast cancer. I had my cervical spine fused in 2002 and my entire lumbar fused in Dec 2005 and have been in pain ever since. I thought the surgery would alleviate not only the problems I was having that necessitated the surgery but that also it would take care of the pain. I couldn't have been more wrong. This has aggravated my side effects to both Herceptin and the Taxatore. I see a pain management doctor once a month. I don't like taking pills but if I didn't I would not be able to function. I take Lorcet four times a day sometimes when I'm having a really good day I only take them 2 or 3 times. I also have oxycodone for when my pain is extremely severe. I try not to take the oxycodone but every once in a while I really need it.
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Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 07-22-2007, 08:49 PM   #17
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Sherry,

Wow, you are putting up with a lot. Wish we could all get together with our jammies on and support each other in person. You are wise to vent your frustrations here. This is not a burden you want to carry alone. I will pray that your pain starts to subside.

Keep searching for the meds that give you the most relief. Keep us posted on your feelings. I guess sometimes the people in our own homes, don't know how to help so they just "ignore?" We are here for you.

Hugs, Catherine
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Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
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Old 07-22-2007, 10:46 PM   #18
lu ann
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Dear Sherry, My husband has had good results from taking neurontin for his nerve pain. I have been on amitrypteline and a fentanyl durelgesic patch for the last 2 years for the nerve pain in my spine. I hate to be on so many meds, but I need them to have a quality to life. I will be praying for you. Blessings, Lu Ann.
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Old 07-24-2007, 06:55 AM   #19
Donna
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Hi Sherry,

You have been in my thoughts - pain like you describe scares the heck out of me. I am always so cheered by your photo with your cute dog it's hard for me to imagine what you must be going through.

Have you gone to a pain specialist? Just a thought, sometimes they can come up with combos other doc's don't - everything is so specialized these days - and they can have cutting edge things that might work for you.

I wish for you pain free days a.s.a.p.!

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Old 07-24-2007, 08:53 PM   #20
Sherryg683
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Thanks all, I am making an appointment with a pain management specialist this week. AND..to top it off, I shampooed my little girls carpet and sat on the floor afterwards. I ended up with 2nd degree chemical burns on my butt..lol. Funny but just another added pain in the rear...lol...sherry
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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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