Herceptin and leg and joint pains

DianneS · 05-01-2009, 02:32 PM

Hi,

I read the thread posted by Lani but the replies are from 2006. Any updates on Herceptin causing:

1) slow hair regrowth
2) brittle nails
3) legs, feet and general aching all over. I usually feel better once I get up, but I have been getting general aches/pains in the wee hours of the morning, which wakes me up so I am sleepy during the day.
4) fatigue
5) diarrhea, barely controlled by drinking 1/4 cup aloe vera juice daily
6) sometimes acid reflux
7) eye doctor said eyes ok, but tear ducts blocked, recommended I apply moist heat daily.
8) eyes will water a lot when I first get up
9) frequent runny nose

I am done with the sessions of Taxotere/Carboplatin. My last session was March 12. So, how much of this is related to those drugs, and how much to Herceptin? I had a Herceptin treatment April 23.

I am thinking about quitting Herceptin in June. I am node negative & had bilateral mastectomies, right breast 50% DCIS, rest IDC, no spread to vascular system, left breast benign, and not sure I want to feel crummy for 6 more months, esp. when no one knows the long term effects....

I had 5.5 doses of Taxotere/Carboplatin/Herceptin beginning in November, 08 and ending March 12, continuing with Herceptin only every 3 weeks.

Diannes

juanita · 05-01-2009, 03:48 PM

my main problem with herceptin was the achy legs, watery eyes and problems with the sinuses. the fatigue takes awhile to go away. hang in there. and the only thing still bothering me 3 years after finishing all treatments is the sinus stuff. lots of sinus infections for me.

Savta · 05-02-2009, 02:38 PM

Hi, DianneS,
I read your list, and I think I can say I have six out of your list of nine. I finished my year long course of Herceptin April 20--so I hope that things will get better. My hair has hardly grown back and my nails are always breaking. The joint aches and muscle pains are frequent, and the runny nose has me keeping tissues handy in every room and bag. The diarrhea comes once in a while and is uncomfortable---but, all in all. I am thankful for Herceptin. Not so many years ago, women like us weren't given such good odds.
So, I patiently wait while all this passes--and pray that the year course did the job.

Ceesun · 05-02-2009, 09:26 PM

No Longer on herceptin but I had muscles aches, runny nose for sure. Ceesun

hutchibk · 05-03-2009, 10:22 AM

I think the overall crapiness you feel is hungover from taxotere/carbo more than the Herceptin. I had taxol/carbo/herceptin a few years ago, and just felt hit by a Mack truck for about 3-4 months after finishing the taxol/carbo portion. Herceptin by itself is pretty easy to tolerate with mostly mild SEs.

My first go-round on Herceptin I had runny eyes and nose... this time, not really at all. But this time it is with Tykerb, so I wonder if somehow the synergy between the two negates certain side effects (while causing others...).

I get sporadic cramps in my leg muscles while sleeping - like one week out of every month. Acid reflux is a foregone conclusion for the rest of my life since being in cancer treatment, but only sporadically and mostly when I eat certain things. Never have I had diarrhea on Herceptin by itself, but definitely when I have had other treatments in combo with it.

Brittle nails became the norm due to taxotere for me, and they have never been good since. And then being on Xeloda for 18 months sealed the deal.

I think you will feel better the further out you get from taxotere/carbo. Those are nasty chemos, and I know that they each kicked my butt. I would be hard pressed to blame the enduring crummy feeling on Herceptin. Give it some time.

If your doc wants you on it for a full year, I would go with that, personally. HER2 is nothing to mess around with, good dx and clean margins or not.

CindyE · 05-03-2009, 07:35 PM

I have the nightly leg and calf cramping. I also have the runny, crusty nose problem. My finger tips split quite a bit too and my hair has been very slow to grow. I just finished my one year of Herceptin on 4/27/2009 so I am hopeful that things will begin to get back to normal now that I'm not taking Herceptin. All my side effects were minimal and I would say you should finish your full year of Herceptin just to make sure you've killed off those nasty her2+ cells.

DianneS · 05-06-2009, 05:56 PM

Hi ladies,

I don't mean to complain....well, I guess I do. I just don't know how much is from the Taxotere/Carboplatin, since I finished 5.5 rounds of that March 12. Would I still be getting loose stools from that chemo? I have talked to other women who had diarrhea while on Herceptin.

So I would say that these side effect are most bothersome for me:

Occasional painful legs and feet (helped by compression hose)
Runny, red rimmed eyes
Diarrhea and/or loose stools
Gas ! Enough to fuel a car
Tired, but getting better
Occasional muscle/joint aches, mostly in early am. Helped by walking walking walking.......

Oh! For those of you who have sinus infection, this may help. Try those nose drops called 'Ocean', or any brand that is salt /saline based. It is healing for sinus tissues and helped me a lot.

Diannes

hutchibk · 05-06-2009, 07:59 PM

For the runny eyes, you might want to consider taking a daily antihistamine. I took Allegra (and used Patanol eye drops) when that was a problem for me the first go around on Herceptin. It really helped.

Gas and diarrhea- maybe get really strict with your diet. All clean, fresh and healthy and no junk food/soft drinks/drive thrus. That is what works for me. When I deviate even just a little, it comes roaring back. (lots of day I just eat the BRAT -banana, rice, applesauce, toast- diet for breakfast for extra measure.)

Are you taking Tamoxifen, Arimadex, Aromasin or Femara, too? The painful legs and achy joints sound more like SEs from one of those than from Herceptin...

DianneS · 05-13-2009, 02:37 PM

No, I'm not taking anything except Herceptin. The onc may start me on aromatase inhibitors later but I am only weakly ER positive and PR negative so I don't know. I see her in June. I won't be done with Hercep until Oct.

I do have a really good diet. I don't eat junk food at all and have never liked processed food. I like to make things from scratch, and we eat organic 99% of the time. My leg cramps and achy ankles are much better. I walk every day and this seems to help.

Watery eyes/dry eyes/crusty eyelids seems to be from the Herceptin. I have seen a lot of posts here about that, yet my onc/pharmacist didn't find anything in the SE's concerning Herceptin and eye issues. Strange. I am using some eye ointment, which pharmacist said will last longer than drops. You just can't see anything for awhile with ointment

Runny nose off & on, definitely also Herceptin related. Fatigue, ditto.

Also, Taxotere and Taxol are in the same family of drugs but are not the same drug. I was taking Taxotere and was horribly allergic to it but did 5.5 rounds of the yuck.

Does it really take months to get the Taxotere/Carboplatin out of your system? Jeesh.

Diannes

DianneS · 05-13-2009, 02:40 PM

hutchibk,

Hope you're doing ok.....with all my side effect chatter I forgot to ask. Chemo brain!

Are you on anything now? Are things stable?

Wishing you all the best,

Diannes

hutchibk · 05-13-2009, 10:19 PM

I am good. I am currently on Tykerb/Herceptin. Things are nice and stable.

Consider trying a prescription antihistamine and maybe some allergy eye drops... it worked well for me when I had the teary eye issue.

Yep, the hangover from taxanes and carbo can take several months to get over. At least in my experience.

NYSunshine · 05-14-2009, 04:54 PM

HI! It is soooo good to hear that others are having the same side effects of the chemo cocktails that I had. But I have one other one that I am hoping someone else just forgot to mention....my fingernails are 1/2 white and 1/2 normal...as if the skin under the nail has actually died. They are paper-thin and I must keep them cut close or they will tear very easily. Any suggestions? I have absolutely loved this message board and wish I had gotten to it when I first started with the chemo. Many times I ignored the side effects thinking I was extremely wierd...now I know that many of you have had the same ones! Good luck to all of you battling this battle right now! We are all courageous if we choose to be!

Laurel · 05-14-2009, 05:30 PM

Diannes,

Chemo wipes out your natural flora in your G.I. tract. A naturopathic doc placed me on Probiotics post chemo for my G.I. irritations and I was good as new within 2 weeks! Impressive. I also suggest you have your Vit D levels checked as low Vit D, and most of us have LOW Vit D, contribute to the leg and joint pain associated with Herceptin and especially with Tamoxifen and A.I.s.

My hair has grown back just as it was pre-chemo. I had a full head of short hair by this past February with my last ACTH in the beginning of Sept. Once I had finished with chemo I began my supplements. I have had little SEs from Herceptin alone. My nails are soft and break easily. I have a drippy nose intermittently. This Spring was awful for my allergies. I cannot recall a worse season, although many friends and acquaintances who are not receiving Herceptin say the same thing. The stiffness and tingling in my feet and lower legs are all but gone now. I really believe the supplements aide me. Have you consulted a naturopath? I am a true believer in their merits.

03-28-2011, 07:36 AM

Hi

Thank you all for posting your experiences. I finished chemo in Oct. and had bilateral mastectomies followed by radiation that ended in March. I started Tamoxifen and Herceptin within days of that. I experienced intense pain in my bones after the first Herceptin treatment and have been achy and VERY uncomfortable since. My doctor stopped the Tamoxifen temporarily to see if the pain is due to that or the Herceptin. I have to wait another week to see if there is any relief. I have my 3rd Herceptin treatment tomorrow. I notice that I am quite nauseous 2-3 days after the Herceptin for a day or so. I started with the runny eyes and nose a couple of days ago. My doctor is sending me for echo/heart ultrasounds every 3 months or so as well.

My Radiology Oncologist referred me to a physical therapist who has a specialty in oncology recovery. She is awesome and uses a lot of pilates to help me stretch and build core strength. I started it to circulate the radiation and prepare for reconstructive surgery but I have to say that it helps with my pain. It doesn't relieve it fully but I can't imagine how hard it would be without it! They're working to make the physical therapy an automatic service provided after all cancer surgery. I'm in Connecticut and know that my therapist is on a national board of directors working on this movement. Insurance pays for this treatment for which I am very grateful!

It's good to hear that I am not alone in these side effects and that with time, they may lessen. I, too was told that the Herceptin would be easy to deal with after everything else but it's really not. Don't get me wrong, I know that without it I wouldn't be here but I still have 9 1/2 months of this to go and it's a drag to have fitful sleep due to the pain and wake up feeling just as bad as when I went to sleep!

Doesn't it get tiring to complain all the time??!!

Jackie07 · 03-28-2011, 10:59 AM

That's the purpose of the support group - nobody but our fellow cancer fighters 'gets it'.

Complain as much and as often as you feel the need. This is not the time (or 'place'

to suppress our thoughts, mask our feelings, or pretend to be O.K.

Hope you'll be feeling better soon.

Christine Mary · 03-29-2011, 10:27 AM

I have very similar side effects . I am 9weeks out from taxane and had my 6th herceptin yesterday. I have quite bad joint pain which keeps me up at night. Still not sure if it is left over from taxanes or caused by herceptin. My Dr prescribed an NSAID which has helped quite a bit. Also still have lots of fatigue. 6 down, 11 to go.

04-05-2011, 12:51 PM

When you've had a bucket load of treatment it's so hard to know what's causing what.
Symptoms at present include achy ankles (particularly at night), aching joints all over when I first get up after sitting or lying down, and what appears to be carpel tunnel syndrome in my writing hand. However I noticed the carpal tunnel two days after starting Arimadex and then had first Herceptin. The oncologist suggested I stop the Arimsadex for four weeks, but it hasn't stopped the Carpal Tunnel problem although it is better. Have had 2 Herceptin but also wonder whether fall out from 6 FEC is partly responsible. I am also fat!!! Put on a stone over chemo and can't lose anything despite return to healthy eating.
Don't feel poorly in general but just achy and tired because of disturbed sleep.

Mary L · 04-05-2011, 01:16 PM

Herceptin has alot of side effects however one of them is keeping us ned. I still have some of them after 3 1/2 years off of hercepin but I am alive and doing well. Had I not been able to take Herceptin, I know I would not be here today. Mary L

BonnieR · 04-07-2011, 01:32 PM

Re: "carpel tunnel", I developed a "trigger thumb" after being on Femara for a few years. Switched to Aromasin and it resolved.

v-ness · 04-20-2011, 06:41 PM

herceptin caused a runny nose for me, eyes so red i looked like i'd been smoking ganja with bob marley, and brittle, peeling nails. only in the past month have they finally grown and looked normal. i finished herceptin in october. i don't know if herceptin caused my sore joints because i am on tamoxifen and have been since april. they really hurt on damp days or if i haven't been active. thus, exercise is a lifesaver. good luck with the rest of your treatment! valerie