Tykerb cramps?

[Sandy in Silicon Valley]

Hi,

On another online support group listserv, a member posed that she was experiencing very bad (uterine? as though menstrual, tho she's been post-menopausal for a long while) cramps, and she's currently on Tykerb, along with an anti-hormonal I think.

I'm on Tykerb/Herceptin - no chemo for the last 2 years, no anti-hormonals for over 4 years. And I've been getting sporadic really severe leg cramps - huge spasms in my right calf or inner right thigh, that wake me up from a deep sleep, in agony.

Anyone else experiencing muscle cramps that might be related to being on Tykerb? BTW - I'm just completing my second month on the drug.

Thanks for any feedback you can offer.

(((hugs)))
Sandy in Silicon Valley

[sally]

I also have bad cramps in my calves and feet. I also have a cramp that feels monthly once in awhile. I am 39 yrs old. I had an ooph 2 yrs. ago and was on Herceptin for 3 yrs., Femara for 2 1/2 then switched to Tamox for the last 6 mos. I was currently dx with liver mets so I have started Tykerb/Xeloda. I have only received 2 doses so far and I still have the cramps in my legs and felt a little crampy today in the lower stomach. I don't know if any of this will help. Just remember not to give up hope and be well. Sally

[Carolyns]

Hi Sandy,

I was on Faslodex and Herceptin and got 2 urinary tract infections. They felt like severe cramping to me at first and then after a while it became obvious to me that it was most likely UTI confirmed by testing.

I have since stopped the anti hormonal and am on Tykerb and Herceptin. No more UTIs. I sometime have foot cramps at night and must stand up to get rid of them. Not often or bad...just a little annoying.

Good luck to you and your online friend.

Carolyn

[IRENE FROM TAMPA]

Yes I get severe muscle spasms/cramps (I am presently on Tykerb/Xeloda for the last year.)

I began getting severe legs cramps in my calves when I was on Herceptin but after on it for 5 years mark. I know it to be the Herceptin because they took me off of it for a while and they stopped. When I got on it again, they came back. This time I am getting them mainly in my sides around my waist, the back of my neck, and even when I yawn sometimes I get a huge one under my chin which really hardens up in my muscle, my hands. My calves also feel very heavy and I am having difficulty stepping upward and getting up from a squatting position (which never bothered me before) I know it is from the chemo. Which one I do not know but suspect the Tykerb since it is the same family as Herceptin. When I tell my doctos they all say, oh I haven't heard of that but I know it is - tried and true.

Take care

[hutchibk]

I'm on tykerb/Xeloda. I too get cramps mostly in the muscle just on the outside of my shin... fairly often. Mostly in the early morning just before my alarm is set to go off. I think it is a magnesium/calcium/hydration thing.

Something interesting, though - a couple of days ago I came down wrong on my left leg and felt a painful POP! I had somehow strained my calf muscle. It is painful and will take a couple weeks to heal properly. I wonder if it has been compromised a little from the chemos/Tykerb/Herceptin?

[OzzieSue]

Hi,
I too have had cramps. I read that normally cramps can be a sign of magnesium defiency, so I started eating more magnesium rich foods and rarely get them now. I think when I do I'm probably dehydrated. I'm not a great drinker.

[Sandy in Silicon Valley]

Hi, y'all -

Thanks so much for all of the replies. First of all, it's somehow reassuring just not feeling alone with these symptoms. I know that it often has taken a fairly long time before unreported side effects of new meds come to public light.

Secondly, I appreciate the suggestions. I will look up which foods are magnesium-rich (I try to avoid supplements, even multi-vitamins, ever since my onc & GP told me to get off Vit. E, which I was taking to reduce effects of anti-hormonals. I will start pumping more water again - always a smart idea, especially here in summer, when it's usually quite warm and dry.

I also get the side neck cramps - diagonally from my left jaw to my esophagus - when I yawn - but I got those even before starting on Tykerb, and thought they were due to tightness around a craniotomy scar. Now it seems like I need to suspect longterm use of Herceptin, and/or adding the Tykerb.

Ah, isn't the cyclical nature of palliative care - tx to treat the treatments - quite a tangled web?

(((hugs)))
Sandy in Silicon Valley

[hutchibk]

Just a thought for a little bit of research- I have heard that cramps can be a result of too much calcium settling into the muscle. As our bones absorb less of it as we get older, the muscle tries to use it and too much build up of it can create cramps. This is not at all a scientific explanation, but it is what I seem to remember... there is a calcium connection too. Somehow the magnesium and hydration helps to counter that as well as chelation therapy. I think I need to start googling and see what I can find and make sense of it. I might have it a little upside down and backwards, but I think that is the basic gist of it... Anyone else ever heard this theory?

[rentrac]

I haven't heard of the calcium to muscle theory, but I'm relieved to hear that others are having cramps as well. I stopped Herceptin and started Decadrona and Tykerb at the same time and had awful cramps in my hands, by my shins and other unexpected spots. First coming off Decadron, the cramps virtually started, but now that I've added Xeloda to the Tykerb, they're returning in a milder form. THe hand cramps are the most vexing - truly writers cramp which is a real pain in the - well - hand. I'm relieved to know I'm not alone.
Rentrac

[Lani]

Did you have an orthopaedic surgeon check you out?

It is possible to partially rupture the Achilles tendon/gastrocnemius muscle or fully rupture a little muscle deep to the gastrocnemium called the plantaris.

The latter from what I understand does not require treatment, but the former may.

Hope this helps rather than worries you...

[hutchibk]

My onc had me go to the GP to evaluate and Xray. It turned out to truly be a grade 1 calf muscle strain, requiring RICE (rest ice compression elevation) for 2 weeks. Now I am putting towels soaked in warm water on the calf 2xday to loosen the muscle and then doing mild stretching... it is a lot better.