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Old 01-01-2007, 11:08 AM   #21
Mgarr
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Joints

I have been off Herceptin since June 06 & continue to have "crunchy", noisey joints but now have another issue and I cannot keep my mind from running away that I have another type of cancer or recurrence.

When first diagnosed & had bone scan I was told the only thing was arthritis in my hip. For months now i have had severe pain & limited movement, we did bone scan tried PT and PT agreed something else was going on so had a pelvic MRI & there is fluid in my hip but the hip does not show "normal" wear. There is an imflammatory response going on & possible PNVS (which is rare) at any rate saw my onc. in the meantime and he felt strongly it was plain old arthritis but may have to have a hip replacement. I have seen an ortho who took an xray commented he had never seen "wear like this" but ordered inflammatory markers which were all off - I regret not getting a copy of the results. I am to have a aspiration & biopsy.

Is it possible to have "out of whack" inflammatory markers and not be cancer?

As always thanks for your continued knowledge and support.
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Diagnosed 11/04 @39yrs. young
Stage IIB
2.5 cm, ER/PR- Her+++, grade 3
Partial Mast., 1/3 pos. node
1/05 full node dissection
4 A/C 4 Taxol DD, Herceptin 1 yr.
30X rads.
BRCA Negative
NED

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all -Emily Dickinson



Check my progress

http://08.the3day.org/goto/mpg08
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Old 01-02-2007, 07:45 PM   #22
Sandy H
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I am sorry to hear you are having so much joint and muscle pain. Are you sure you don't fibromyalgia? When I am on Chemo and my blood counts are down then it goes into remission and when they are high then it flares up. Drinking lots of water helps joint and muscle pain. Lots of water means as much as you can drink I try to do a half gallon a day. If I don't then I notice the pain level goes up. I do rebounding on a trampoline daily and that helps as there is no stress on the knees, feet and legs. Its a gentle bouncing and really helps my lower extremity. I hope this helps. hugs, Sandy
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Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!




I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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Old 01-14-2007, 06:13 PM   #23
momdeeco
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Does anyone know if mixing Herceptin with sterile water instead of benzyl alcohol helps with joint pain. Will be getting my 5th does this Wed. My knees and hips are so stiff when getting out of bed or from a chair. Does anyone have and suggestions for the joint pain/stiffness. Although I'm not complaining if this is want it takes to be NED. I don't post often, but read posts every day. I am thankful for this site.
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8/05 NORMAL MAMMO
11/05 DX AFTER FINDING LUMP AGE 47
STAGE 1 HIGH RISK
1.1 CM/NODE NEG
ER-/PR- HER 2 +++ GRADE 3
12/05 PARTIAL MASTECTOMY
1/06 CHEMO AC DD X 6
5/06 RADS X 30
10/06 STARTED HERCEPTIN AFTER 3RD OPINION
3/07 GENETIC TESTING-GENE VARIANT FOR BRCA 1 AND 2
3/07 STOPPED HERCPTIN DUE TO LOW EF
BSO 8/08 (P53 SIGNATURE--PRECANCEROUS CELLS)
11/08---IN A STUDY/MRI EVERY 6 MONTHS/MAMMO EVERY YEAR
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Old 01-16-2007, 10:47 AM   #24
tousled1
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Momdeeco,

Yes, reconstituting the Herceptin with saline water does help! I am receiving Herceptin only and have been plaqued with bone/joint pain. My last 2 infusions I had them reconstitute the Herceptin with saline water and what a difference it made! Tell your oncologist that you want the herceptin reconstiuted with saline water and I know you too will notice a dramatic difference in the amount of bone/joint pain you experience. I was at the point that I was ready to quit the herceptin all together I was in such agony. Now, I know I can finish out my year.
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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 01-16-2007, 08:00 PM   #25
Sandy H
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Wow, Kate that is good you are feeling better. Thanks for sharing that piece of info with us. I am sure there will be others that will want to try it. I wonder why they use the other? It would make sense to me to use the saline. Less toxic to the body I would think. There must be a reason. Good luck with the Herceptin. hugs. Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!




I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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Old 03-21-2007, 08:15 AM   #26
carolynaltiere
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Smile herceptin and bone pain

Iam no longer on herceptin but when I was I had a lot of pain in my joints and bones in my legs. The day after herceptin I would go back to the doctor and he would give me a B12 shot. The pain almost went away right away, maybe you should ask your doctor about a b12 shot. Hope it helps!
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Old 03-22-2007, 01:27 PM   #27
myu2050
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It is the hereceptin, I had the exactly same experience as you do now. Hang on, it will get better.



Mary
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Old 03-22-2007, 05:54 PM   #28
gin-tx
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Bone pain

Dear Mary,

Thanks for info. Since I've been losing weight the bone pain has gotten better except in back I have a malignant tumor on spine, have had radiation and it is staying same, not improving or getting worse. Just there. My biggest problem I had after last treatment was terrible stomach problems and fatigue, I was in week-end and did not work on Mon and should have stayed home Tues but pushed myself to go to work. Only work 6 hrs a day, so feel I should be there as much as I can.

Keep in touch and let me know how you are doing.

ginkott1@aol.com
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Old 03-22-2007, 10:57 PM   #29
SherriT
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I shall consider myself lucky by the sounds of it. I have generally had no overly noticeable side effects--except for really bad fingernails and a nose that runs like a tap. If I'm suffering from other side effects I guess I'm just plain oblivious to the Herceptin being the cause. In any event, Herceptin has been a dream after chemo. I have my LAST Herceptin in two weeks--the panic is starting to set in knowing that treatment is now coming to an end....
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Old 03-23-2007, 05:16 PM   #30
gin-tx
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Smile Joint pain from Herceptin

Dear Sherri,

Thanks for your message. I have little bone pain compared to others. I talk with some people who have pain constantly. I think I'm better than I was in the beginning. My fingernails are getting wierd. I have tips and one popped off today, had not had that occur in ages. Hope this doesn't mean they'll all start doing that, will get them done on Sat and see what happens, may have to do them more frequently.

The announcement about Elisabeth Edwards yesterday really upset me. She looked like she had lost a tremendous amount of weight since she was first diagnosed. Hope her prognosis is good and they can help her, did sound scary. So far I have not had conventional chemo, just Herceptin and Aridia, which the latter gives me a lot of problems, both during and after treatment. I had none in beginning and that has reversed, Herceptin does not seem to bother me.

Keep me informed of your progress and know you'll do well after last treatment. I have 1 yr anny of diagnosis in April, this is my second episode of BC, first was in 1995.

hugs,

ginkott1@aol.com
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Old 04-09-2007, 11:01 PM   #31
kat in the delta
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Unhappy kat in the delta

I have been off herceptin for about 6 months and My body is stiff in the morning and I ache all the time.I ache if I sit, or stand or most all the time...My Onc.was giving me Zometa every 3 months (4mg/visit)--which I just heard a talk on and 2 M.D.'s concurred was an overdose unless it had meta. to my Bones. MY reg. family MD ordered a bone scan and it came back fine. But I am still in pain -- My Onc.says all I need is the tumor marker test, which I get about every month.My rather thin ankles are retaining fluid and I have brown patches on them also.--went to my derm and He said it was my circulation and the brown patches were iron deposits..Have any of you had this happen..?? What does anyone think?? gottta go now-in PAIN>>>>>>>>>>>>>>> kat in the delta
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Old 04-13-2007, 08:27 PM   #32
futurefocus
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Talking Only 7 more treatments

Hi all..I now have 7 more Herceptins...I can't hardly believe it. I finally had to go to a Pain Management Doctor, otherwise I couldn't have gotten this far with the Herceptin. I take Darvacet w/tylenol and neurontin 5x's a day...almost every three hours. I also make sure I take benedryl the night before , as a premed and 2-3 nights after my Herceptin treatment. I am so happy that I am almost finished...I now am more than certain that THE PAIN IS THE HERCEPTIN for me....It is contra-intuitive but then again so is chemo...just trying to go with the best reseach info out there and so far for Her2Neu++++ IT IS HERCEPTIN.....We will all get there...hold on and consider pain meds..to get through it.

Love & Smiles...
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Old 04-15-2007, 05:14 PM   #33
sdhaem
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I am just starting my herceptin. I am new to this site... but have so enjoyed all the posts.. will have to learn what to do and how to navagate , I have what the dermatoligist says is pre cancerous lesions on my forarms she gave me a chemo cream for it and I return after 4 weeks.. Does anyone else have this problem, do you think I should insist on a biopsie fo the lesions
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Old 04-17-2007, 05:45 PM   #34
gin-tx
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Smile Joint pain

I'm still trying to navigate this site, I think it's rather difficult, have had to get help and still have some trouble. The places on your forearms, if your dermatologist knows you are getting treatment, I would think if she though necessary she would want to check one of the places. Continue going to see your doc and see what she has to say, also show them to oncologist.

I have leg pain but have had it for a long time before I started treatment, also back problems with lower back. Then after my surgery last April, during the course of several tests, a tumor showed up on my spine, it was malignant, so I had 10 or radiation treatments, then began chemo so they were going on at same time. Still doing Herceptin and Aridia, I get very tired after treatments now and try to rest all week-end so I can return to work on Mon.

Good luck to you, keep in touch and let me know how you are doing.

ginkott1@aol.com
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Old 04-20-2007, 09:00 AM   #35
gin-tx
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Pain from Herceptin

I do have pain in back and legs but had it before I ever started Herceptin so can't say it's from the medicaiton. Sorry you are having such difficulties but you are almost finished. I hope you continue to do well and your pain is eliminated after treatment is finished.

ginkott1@aol.com
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Old 06-23-2007, 07:44 PM   #36
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thought to bring this up again

Hello everyone,
Sue has had a pretty good run being on Herceptin (only) up until now. Her last treatment really brought on a lot of bone pain in the hip area and the heels of her feet. She describes it as feeling like arthritus.
We read the posts about diluting Herceptin with Sterile water and the results had. We wonder if there are any more testimonies/suggestions.
Sue was getting weekly treatments of Herceptin, and this is the first three week period before she starts treatments every 3rd week. We don't see eye to eye on that decision, but ultimately it is hers to make. The concern I have is that her next treatment will necessarily be a heavier one because of the new schedule, so pain is naturally something we'd like to minimize.
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---Kevin and Sue---

Dx'd 10/06 IDC grade III/III
Er- pr- HER2 3+
MRM right breast 12/5/06
nodes negative
same day reconstruction started
(implants)
Stage II (2.2 cm tumor)
fairly extensive DCIS
Ct and Bone scans clean
Port placement 12/26/06
AC (4 cycles DD)to begin 1/2/07
Taxol/Taxotere (4 cycles DD)
Herceptin for one year

"There is no distinction between the one who gives, the one who receives, and the gift itself."- Hahn
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Old 06-23-2007, 08:42 PM   #37
Bev
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K & S, Herceptin and taxol has been kind to me. I have had wild cramps in my feet, where my toes take a 90 degree turn that I assumed were the result of wearing flip flops all the time. Hmm. I think you have nothing to lose by having saline mixed with H. BB
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Old 06-23-2007, 08:47 PM   #38
Bev
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PS. Going from weekly to once every 3 weeks was a non event for me. We are are individuals, you have to jump and see. BB
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Old 06-23-2007, 09:38 PM   #39
tousled1
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Kevin & Sue,

While I was on Herceptin I was plagued with bone/joint pain in the lower back and hip area. I tried the every week and every three week schedule eventually settling on the three week schedule. I did however have the Herceptin reconstituted with saline water which helped with the bone/joint pain. I also got a prescription for Lidocaine ointment (not the cream which I did use on my port a half hour before treatment) and would put that on the areas that were painful -- really takes care of the pain.
__________________
Kate
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 06-24-2007, 08:35 AM   #40
gin-tx
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Joint pain

Dear Kevin and Sue,

I don't know anything about weekly Herceptin treatment. The oncology group I go to gives every 3 weeks to majority of patients, but I also get saline which is started before Herceptin. As far as various strength, I have never asked but I will Fri when I go for treatment. E mail me back so I'll have your address and I'll let you know the type I'm getting. I have been getting Herceptin for 1 yr, will continue at least 1 more yr as I have Her tumor, very aggressive (was biopsied, malignant, then wider margins performed). Plus I also have a tumor on my spine discovered in bone scan, changing me to Metastatic Grade IV. Also I had BC 11 yrs ago, only treatment radiation. Had radiation on spine, but too many other problems to have breast radiated. So far tumor on spine is stable.

Keep me informed of your progress. I have such back pain don't think about other areas, seeing pain mgt dr in July.

hugs,

ginkott1@aol.com
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