Herceptin Joint Pain - Does it last the whole year??

[christine brown]

Hi there ,
Only had 2/17 herceptin treatments and was wondering if the stiff sore joints every morning and after sitting for a while is very common and will likely last the whole year. This is my first post so hopefully I'll figure out how to read and respond to anyone who kindly offers info.
Thanks a lot,
Christine

[tousled1]

Hi Christine,

I started Herceptin in June and am plagued with bone/muscle/joint pain. Since I am only on Herceptin, I know that it is the culprit. I have talked to my oncologist about it but she seems to disagree with me that it's the Herceptin. I'm going to a pain management doctor wnad receiving pain medication from him which really helps. According to the pain management doctor muscle/bone/joint pain is a huge side effect of Herceptin. I know that with each infusion I get the pain gets worse. I have tried getting the Herceptin every week and then switched to every three weeks to see if the pain would be less. No difference in pain level whether I get the infusion every week or every three weeks. So I have opted to go the every three weeks. Matter of fact, I go this Friday for my Herceptin. I have been complaining since day number one that Herceptin and I just do not get along very well. At least all my scans and markers are good so the Herceptin must be doing it's job. Hang in there as I understand that once you stop the Herceptin the side effects slowly diminish. There was a post entitled "Herceptin side effects - real or perceived" on the board. You may want to do a search and find the thread. I'll look for it and post it if I find it.

[tousled1]

Christine,

I found the link for the thread dealing with side effects of Herceptin. You may want to read it. It will at least put your mind at ease.

Please post your two cents on Herceptin "side effects" real or perceived! (http://www.her2support.org/vbulletin/showthread.php?t=23696&highlight=herceptin)

You may also want to post on the HER2 board as that is read more frequently.

[futurefocus]

My first response but I am so thankful that this site is available. I have been suffering side effects since day one ( I have 6 months behind me now). I was told that this would be the easy part....but not for me. I have had all the above...especially joint, muscle , nerve pain. It is very painful...in fact so much at one point I could barely get out of bed. Just so you know during the regular chemo I was walking 9-12 miles a week on my off weeks....I can't even walk a couple of blocks on Herceptin. I feel like my muscleoskeletal system is as brittle as my nails...dry and ready to crumble. I did ask after 3 months of treatment (so late 'cause I thought side effects were residual) that they remove the perservative from the Herceptin ( which is benzole alcohol...a very nasty chemical). This seemed to help a little ...decreased the accumulation affect so that I could continue my TX. My onc contacted the original 3 drs. of the longtitudinal study in which the FDA approved it and they all said that these side effects I was having were very rare and unheard of. One did say that he knew only one pt. that went into renal failure due to the autoimmune system esponse on itself. A little scarey but I feel better that others have similar concerns and many have done well after it. I have been on a Herceptin vacation for 4 weeks as my Onc couldn't tell me if all my side effects would be permanent or not. May run some more blood tests for things like Lupus or other autoimmune issues to rule out that my joints are not being damaged in the long or short run. During the break the nerve pain is gone, rib pain more prominant, weight gain decreasing consistantly, nails not so brittle, joint pain better but still not normal, nausea more noticeable and even noticed some eye lashes have fallen out, stiffening when sedentary still present and fatigue is still pretty bad. Hope this helps. Thank you everyone for sharing. Here's to our future!

[tousled1]

futurefocus,

I'm sorry to hear you are suffering so much with the Herceptin but at the same time thankful that I'm not the only one. I am just about at the six month mark with my Herceptin and believe me I can't wait until my year is up. My oncologist says the same thing -- never heard of bone/muscle/joint pain being a side effect. I'm not mistaken they mix the Herceptin with benzole alcohol. I believe that Lani posted something to that effect. In her post it also stated that the Herceptin could be mixed with saline water. I think that I will ask my oncologist about that -- at this point anything is worth a try. I do fully understand how your musceleosketal system feels. Some days I get up and it just feels like my feet are just going to snap! I guess all we can do in hang in there. Thanks for sharing. At least now I know I'm not alone.

[futurefocus]

Yes they reconstitute it with saline water....much better. The perservative is for the Herceprin shelve life not our lives!

[atdec05]

Hi all,

I've been experiencing joint & muscle pain as well. I had some blood work done and they ruled out thyroid, rheumatoid arthritis, and autoimmunite problems.

The rheumatologist could only diagnose me with creptitus. Do your knees make a crunching sound when you go up & down stairs?

I am taking Glutamine, but so far no difference. Can you point me to the thread that talked about mixing Herceptin with saline.

My last treatment is Jan. 31, so I'm hoping I will make it through with no permanent damage to my cartiledge.

- Anna

[futurefocus]

I don't know where the thread is but I can tell you I read it on the official website for the herceptin drug. It suggests that if there is a reaction try and remove the perservative and reconstitute it with sterile H2O. Hope this helps. I am new so not so familiar with the threads yet..sorry.

[futurefocus]

Glad to hear your are almost done...Hang in there...it can only get better!

[tousled1]

Here is what you are looking for and it was posted by Lolly.

It's possible you're having an allergic reaction to the dilutant being used, which is normally benzyl alcohol. Here's a quote from the Genentech web page regarding dosage instructions for Herceptin, along with a link to the page:

"...If the patient has known hypersensitivity to benzyl alcohol, HERCEPTIN must be reconstituted with Sterile Water for Injection (see PRECAUTIONS (http://www.gene.com/gene/products/information/oncology/herceptin/insert.jsp#precautions#precautions)). HERCEPTIN WHICH HAS BEEN RECONSTITUTED WITH SWFI MUST BE USED IMMEDIATELY AND ANY UNUSED PORTION DISCARDED. USE OF OTHER RECONSTITUTION DILUENTS SHOULD BE AVOIDED..."

Genentech/Herceptin Page
http://www.gene.com/gene/products/i...#administration (http://www.gene.com/gene/products/information/oncology/herceptin/insert.jsp#administration)
<!-- / message --><!-- / message --><!-- sig -->

[atdec05]

thanks for the info, but would joint pain be considered an allergic reaction? I guess I'm wondering what the connection is between mixing Herceptin with alcohol and joint pain.

- Anna

[tousled1]

Anna,

I don't know what the connection would be. I called my oncologist today and discussed having the Herceptin reconstituted with saline water for my infusion tomorrow. I'm thinking in terms of alchol dries things out and perhaps that is what is happening when it's mixed with the Herceptin -- it dries out the cartledge or something in the joints. At any rate, I'm hoping that tomorrow when I get my infusion the Herceptin will be reconstituted with saline water. The point I'm at now with the muscle/joint/bone pain I'm willing to try anything if it might help.

[gin-tx]

Dear Christine,

I have been on Herceptin with Aridia since June, I think the aridia causes more side effects for me. I had arthritis and bone pain before I began treatment so can't tell if it's more or the same. I do feel stiff some mornings when I wake up. I find I have more pain in feet than anywhere else, figured it was just getting older. I'll ask the onc when I go back on Dec. 22 for a treatment and also see the dr. Last time I received treatment only, doc was on vacation.

Good luck with your treatments. I wish I only had 17 to do, don't know how much longer I'll be going, I tried to get an answer and he wouldn't comment. My surgeon said he had a patient that just got off Herceptin after 3 yrs. Oh well, if I have to I'll continue.

hugs,

ginkott1@aol.com

[Cammie]

I was on Herceptin for a total of 1 year. 3 months with Taxol. My last treatment was March 2006. I am still experiencing painful feet and joints. Some days it takes a lot of effort to walk or work out. Once I am up and moving, they get a little better until I sit down again. I am having a hard time finding shoes that are comfortable. I don't know if something else is going on, I will be seeing my onocologist next week. I was diagnosed with Stage III unusually aggressive breast cancer in Oct. 2004. I have had left mastectomy with reconstruction. Now if I can get my feet and legs to stop hurting, I certainly would feel better.

I feel better knowing that I am not the only one with feet pain.

I enjoy reading everyone stories.

Cammie

[tousled1]

Hello everyone,

Well, I had my Herceptin treatment today and they reconstituted the Herceptin with Saline water per my request. So far so good. Guess I'll know in a day or two whether it makes a difference in the bone/muscle/joint pain. If it does then I will have my remaining Herceptin treatments reconstituted with saline water. Will keep you posted.

[gin-tx]

Dear Cammie,

I have not been on Taxol so don't know what the side effects can be, maybe with it combined with Herceptin it makes for more body aches. I don't know. I have noticed I have pain in my left foot on the top of foot and where the instep is (I think that's the top of foot). I thought it's just me, I have arthritis in various parts of body, lower back, knees, and maybe even feet, I don't know. Don't want to go to a podiatrist, they like to operate. And I'm not doing that. Had foot surgery once, it was awful, never again as the pain was so bad. I may ask my onc when I see him next week if this pain could be from Herceptin. I find my biggest problem is being unable to sleep the night after I have treatment. I'm wide eyed all night long. Maybe because I sat all day and did not exert myself. Who knows. I have sleeping pills, anti depressants, pain meds (2 kinds) and am hesitant to mix too much as I take about 10 RX on a daily basis. Keep me informed what your dr has to say. I'm interested.

hugs,

ginger

[tweet7805]

I was on Herceptin/Taxotere wkly for 11 treatments March-June couldn't do last treatment because it dmg my lung(taxotere). Back on Herceptin July - Current to end 3/29/07. Then I understand I won't do anything else unless there is reoccurrence. Mamo on both was clean Nov. 2006. So I am glad to hear other people having problems with side effects and this is not in my head. I have joint pain in knee's, shoulder and hands, horrible neuropathy in hands and feet and fatique so bad sometimes I can't do anything but sleep. My disability carrier is on my back about returning to work but I don't see how I can work particularly with this horrible fatique although I know some do. I fear cancer has come back because fatique seems to be getting worse. I just don't know what to do, but my next appt is 12/27 so will discuss all with onc and see if he can advise and maybe alleviate some of my fears.

Thanks for listening
DX 10/11/05
Lumpectomy 11/22/05; DX IDC; Stg IIA;1 Sent Node Pos.; Grade III; HR/PR -; HER2 +++
AC - 12/29-2/28/05
TX/HERC 3/7-3/29 Wkly; Taxol discontinued 3/29/06 Alergic Reaction
Taxotere/Herc 4/7-6/14/06 8 Wkly
Herceptin E/3 Wks 8/06 - 3/29/07
33 Rads 8-9/19/06
Clear Mamo Nov 2006

[gin-tx]

I have not have joint pain that you describe so maybe it was the combination of Herceptin and Taxotore mixed together. I get Aridia and have some knee pain but had that before I started treatment 6 months ago. You mentioned neuropathy, I always thought that was associated with other conditions such as Diabetes but maybe I am incorrect.

This is my second episode of BC, first 11 yrs ago. I was rediagnosed in April 2006, much more aggressive than first suspected. My biggest complaint is with the area that had a malignant tumor on spine and I had 18 radiation treatments to get rid of that. I cannot lie flat on my back, pain is terrible, I take pain pills and try to function each day. Still work part time but don't know for how much longer I'll be ble to manage that. At this point have no idea how many more Herceptin treatments I will be getting, I suspect I'll be doing this a yr from now. Keep me informed of your progress and how you are doing.

hugs,

ginkott1@aol.com

[Roz]

Guys I've been on Herceptin and Arimidex since Jan 2005. Stiffness all the time after sitting etc. Joint pain went after about 6 months. But thankfully, I'm still here!!
Cheers and best wishes, Roz

[gin-tx]

Dear Roz,

I think your pain is from the Arimidex. I had talked with people when I was taking radiation for my spine, one of the ladies said her mother had terrible joint pain from the Arimidex. I don't think it's from the Herceptin unless it's from taking the two close together. Ask your onc what he thinks. I think in time they are going to put me on Arimidex, hope I won't have such side effects. As far as the Herceptin I have no pain, the only pain I have is in my spine and it's from the location of the malignant tumor that was radiated.

Keep me informed of your progress. And a healthy and happy new year to you.

hugs,

ginkott1@aol.com

[Mgarr]

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.

[Sandy H]

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

[momdeeco]

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.

[tousled1]

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.

[Sandy H]

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

[carolynaltiere]

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!

[myu2050]

It is the hereceptin, I had the exactly same experience as you do now. Hang on, it will get better.



Mary

[gin-tx]

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

[SherriT]

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....

[gin-tx]

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

[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

[futurefocus]

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...

[sdhaem]

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

[gin-tx]

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

[gin-tx]

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

[Heart Sutra]

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.

[Bev]

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

[Bev]

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

[tousled1]

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.

[gin-tx]

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

[Emelie]

I go every three weeks for my herceptin treatment and I get decadron (steroid)as a pre-med. I do get a flushed face in the morning, and I take Antivan to sleep a couple of days, but I don't experience any joint pain, and I had it bad. Ask your onc if that will work for you.
Emelie

[sdhaem]

Has anyone had heart damage from the herceptin, I have L and R Ventricle damage.. Mild they put me on two heart medications and I go see my oncologist July 17th to see if he wants to put me back on herceptin...

L breast quadectomy Oct 3,06 Ductal invasive carcinoma
grade ll , Nuclear grade Intermediate, differentiation, poor
her/2 3+
33 rads done July13,2007
node / neg
R breast surgical biopsy 3 spots

[kat in the delta]

Hi
My Onc never let me do my last 2 Muga heart tests..but feel out of breath and know my circulation is worse because of Herceptin....I am thin and my ankles swell alot and from the bottom of my anlkes to my mid calves...I have brown splotches....from iron deposits because the blood does not flow up like it use to....ANY ONE get These Brown Spots/splotches on ankles going up like a sock ????? kat in the delta

[sdhaem]

kat I would get to the onc.. and request a test... I don't have the brown spots but ,, but the muga scan caught the heart damage from the herceptin.. are you still doing herceptin..

[gin-tx]

Dear Kat,

I would definitely see both cardiologist and your oncologist. I have been on Herceptin for one yr, no heart problems when I had last muga, probably due for one soon, my dr does them every 6 mo. I know my circulation isn't great as my feet get cold at night but I wear sox to sleep in and it helps. Hope you're doing better, please stay in touch as we all have the same battle.

ginkott1@aol.com

[sdhaem]

Thank you so much for the reply, the cardiologist put me on two heart medications...my muga scan showed a slight decrease in my left ventricle on the second muga scan so they were doing them every 2 months but the last was a lot of decrease.. he thinks they can put me back on herceptin and watch the heart...

[Catherine]

Kat in the Delta and other Herceptin Pals,

Kat,I tried to send you a private email, but could not get it to work.

Brown spots, stiffness, etc....You have had more than your share with side effects. I started Herceptin 12/27/06 and now it is 7/6/07. I feel lucky to say I have only had the minor side effects.

Runny nose...which is now better..subsided a bit after 4 months.
Stiffness when I get up...also is subsiding.
I do walk 5 times a week and drink a fair amount of water.
Have one drink 5 nights a week.
I get lots of sleep.
2 mugas, both good.
Bloody nose first and second day after Herceptin. Actually a little more intense this last time.
I get Herceptin every 3 weeks. Will ask about how they mix it next time.
No problems with my port.

Thanks to everyone who has posted their information, it is so good to share and increase our knowledge. I love the advocacy roll we all take.

All the best, Catherine

[kat in the delta]

sd_____ et al..,
You said you were getting 2 rx's for your heart. I already take a blood pressure pill and a diur. When I went to my Dermotolgist... he gave me another diurectic to enhance the 1st one.. I also take Potassium. I am in pain even if I sit at the computer for an hr..... It feels like a Nawing(?) pain all over.... I have to lie down FAST.... & try to relax.. to make it better... A pain pill helps me in the morning, I have to admit..... My Onc. says that I should not have PAIN and refused to give me any pain pills when I saw him the other day....but..(lite bulb !!) HE had not even received the Tumor Marker test Back ..yet..!!! I am just know remembering that !! ChemoBrained,
Kat in the Delta My chemobrain may be from bad circulation...
R.S.V.P. WHAT WAS ANYONE's MUGA SCORE ? If the Rested-Gaited is the same... my last one was a 48--a yr ago.. hadn't had one since... kat in the de;ta

[dhealey]

My onclologist has me get echocardiograms every 2 months. I have been on Herceptin every 3 weeks since Feb. will be done Feb. 2008. The only side effect I have is occassional joint pain when sitting for long periods then only when I get up. Could be from the arimidex or herceptin. Don't know since I started them at the same time. I am told on the echocardiogram the ejection fraction must be above 50% to stay on herceptin. My last one was 62%. Must add I am also on a BP med with a diurectic was on this before BC. I also walk every day which helps the heart and the bones.

[misskuwait]

HI I have been on Herceptin for a year for first stage Breast cancer. Had my last infusion in August 2007. My back pain and general all over aches and pains has got gradually worse over the year of treatment and seems now almost unbearable at times. My body aches constantly and when I sit now at the laptop I have to put cushions at my back.
Exercise seems to help when I swim the pain goes for a while. I am wondering how long these side effects will last. I have a "crunchy knee" when walking upstairs. Sometimes I fear the cancer has come back but I think that logically it has to be the Herceptin. I also take Tomaxifen and wonder is this a bad combination of drugs. When I tell my onc about the back pain she just brushes it off.
I am happy to know that I am not imagining things and unfortunately there are others out there who are suffering also.

[gin-tx]

I think everyone's pain level is different. I had joint and back pain before I started treatment for bc so can't be sure they are even related. Have you tried any over the counter items. You might ask your dr first to see what he recommends. I have had back and knee pain for so long, I think a lot of it is degeneration from age.

ginkott1@aol.com

[Aangelnxtc]

Hi Ladies, Well I thought it was my 6 months of chemo catching up with me. Guess what its not he he. Had my last chemo on 9/28 but still on Herceptin since the first day of my chemo. Went to every three weeks. Friday was my second 3 week dose and I have had more pain, stiffness, etc... today then I have had all along. Call my Doc she is sending me to a pain management Doc. So she most know its only gets worst. Also gonna request a change in my Herceptin. Maybe it will help me.

Thanks for all the good info.

Angela

[Aangelnxtc]

Kat, my last one was 60, I also take omega 3 4 times a day. Could be helping. The way I understood it at 50 they make u take a break.

Remind ur Doc u need 1

Angela

[Unregistered]

Thank you all for sharing your stories. I was starting to think I was imagining my symptoms. I have had a runny nose since my first treatment and the joint and muscle pain has become increasingly worse. I have also had fever and chills and some nausea at night. I only have 2 treatments left and hope to get back to normal soon.

[Unregistered]

Hi All,

Thanks for sharing all the valuable info about herceptin. Last month when my mother had pain after herceptin treatment I was looking for the same information.

My mother was treated with Herceptin+Xeloda with 1st dosage of 8mg/kg. Incidentally there was no pain after the first cycle. During the second cycle, doctors reconstituted the remaining herceptin from first cycle with saline. There was severe joint and bone pain after the second cycle.

I read through these blogs and asked the doctor to administer a fresh batch of herceptin every cycle, as the batch size of 440 mg is almost equal to one cycle's requirement.

The third round onwards, there is no pain. It is to be noticed that the second round which caused pain was also reconstituted using saline only, and not benzyl alcohol. So it seems that the pain is caused by part usage of one batch regardless of the mode of reconstitution.

She has undergone her 4th cycle as well last week and is fine with regard to bone and joint pain.

Hope it helps someone.