To Marily -regarding cramps while on Herceptin

IRENE FROM TAMPA · 03-21-2006, 05:43 AM

Wow - this is the first time I ever hear anyone complaining about muscle cramps while on Herceptin. I thought it was only me. I was even beginning to think I was contracted a more severe illness. All of my doctors said they did not think related to the Herceptin. All my blood level were great so knew it was not that I was low in some area.

I was on Herceptin for 6 years with no complications what so ever until the last 1 1/2 I started developing severe leg/feet/hand cramps. And I mean severe.
I could not even flex my leg and was becoming afraid to drive since you have to extend your leg.

They took me off of Herceptin last July when I started taking Abraxane and have not experienced those cramps again. So I knew at this time it had to have some bearing.

I am sorry that it is happening to others but should be reported to our doctors so can be documented.

Take care and I hope all goes well with you

jo50 · 03-21-2006, 08:58 AM

Interesting! I started getting leg cramps, and sometimes also hand and side/rib cramps around the time I started on Herceptin. I also started on Fosamax (and Advair and Nasonex!) around the same time and had assumed the cramps were due to the Fosamax, but maybe not. The cramps are sometimes quite intense and I also had trouble one evening getting my feet out of the complete cramp lock they were in. Not troublesome enough (of course) that I would stop the Herceptin, but interesting that this may be an under-reported side effect. As you say, good to let the docs know so others starting on the drug won't be wondering what is going on. I'll be interested to hear if others have had the same issue. Another possible minor side effect (or maybe this isn't Herceptin) - my finger nails are being very badly behaved since I started Herceptin. They got through Taxol OK (mis-coloured, threatening to drop off etc.) but actually were very strong during treatment. Since Herceptin they are soft and peel/crack all the time. Anyone else finding this as a problem?? Best to all of you out there walking this path. Jo

Becky · 03-21-2006, 09:07 AM

I can have leg cramps but I can control them. I know this sounds odd but it I don't point my toes or extend my leg (more the right leg than the left) too much, I am ok. Otherwise, extension can bring on a real mega-locking cramp.

My nails are a mess too and I have not had a taxol for over a year and I am on Herceptin only (and Arimidex).

Best regards

Becky

PS - until this thread, I just thought the leg cramp thing was just me.

Lolly · 03-21-2006, 09:39 AM

I HAD toe, foot, leg, finger, and diaphram cramps (the worst, couldn't move when they would strike) until my onc started me on 400mg magnesium oxide twice daily, taken with my calcium supplement. It stopped all cramps cold, but if I forget a dose I can feel them starting again. I didn't have them to this degree until I started Navelbine with Herceptin, but have always had mild cramping in the extremities since Taxol years ago. I didn't realize they might be related to Herceptin, but your experiences are making me wonder.

<3 Lolly

Julie2 · 03-21-2006, 10:32 AM

I too get leg cramps occationally. I am on herceptin.

julie

Andi · 03-21-2006, 10:39 AM

I have been off the Taxol since Dec 7 but my fingernails are really soft and split and tear easily. I have been on Herceptin every three weeks since then, I do have stiffness in my ankles and heels when I get up in the mornings, not really cramps, just stiffness.

StephN · 03-21-2006, 11:39 AM

Hi everyone -
Been maintaining on Herceptin now for 3 years 9 months.
I never got the cramps until after my adjuvent drugs and starting on Taxol, Navelbine and Herceptin for mets. After 27 weekly treatments with the above combo, I have NO deep tendon reflexes left. Hit my knee or elbow with the rubber hammer and nothing happens. My med onc says that is due to the Taxol, but I do not suffer from neuropathy in hands and feet to any noticeable degree.
I had terrible aches during Taxotere for which I took Neurontin and this helped.

Our "fix" was to give me Quinine and I know other women who have had a lot of chemo and BC drugs who also now take the Quinine. It is cheap and it helps a LOT. Like Lolly's magnesium it is more like a supplement.

I used to get those crippling foot cramps while on the drugs for mets and would have to pull over and stop while driving to let it pass. The excruciating leg cramps still come once in a while at night and wake me up.
I also eat bananas or drink OJ for the potassium.

My nails are doing great - as if I never had any change from pre breast cancer!

Marily · 03-25-2006, 11:03 AM

Thank you so very much for posting your side effects especially the cramping.. I have apt Monday and flying to California to see Dr Slamon. (my cardiologist calls him my Guru) I am praying he can help find some solution or reason.. since I have been on only Herceptin past 5 years. I stopped it 4 weeks ago because the cramping was sooo bad. Now am scared that I am off it.. Pray he will have some answers... or reasurance. Love and Hugs to you all who answered. Marily