Tykerb and weakness/shortness of breath

[Stephanie]

My mother switched from x/h to x/t one week ago. The past couple of days, she's been very weak and short of breath. These two symptoms are listed under "serious side effects" of Tykerb, with the advice of contacting one's doctor immediately. Well, she's the first person at our cancer center to be on Tykerb, so I don't know if they know exactly what to do, frankly.

So, my question is, if one experiences one of the "serious side effects", what do the docs do? Reduce the dosage? Take one off of Tykerb immediately? What's the drill?

Any input is greatly appreciated--thanks.

[Lala]

Stephanie,
I am so sorry to hear your Mother is having side effects. I hope that the doctors act quickly to find the cause of these symptoms. I would think stopping all treatment would be in order. It seems some baseline tests should be ordered immediately to rule out any other problems. I think I would request a muga scan as one test.

I once suffered an obvious severe allergic reaction to a chemotherapy drug that was being infused for the first time. In that case we knew it was 100% caused by a chemotherapy. I think until they do some background tests it's hard to say if it is Tykerb or not. There is data out there on Tykerb and Xeloda. I am sure the doctors can consult with the drug company or other oncologists experienced in this drug line.

I wish you and your Mother the best.

Hugs

[hutchibk]

I have heard that Tykerb can be hard on the heart, a bit like Herceptin. I wonder if it is a heart issue. Perhaps her doc should order a Muga scan. Was she getting regular mugas while on Herceptin?

[dhealey]

It could be a heart issue or her hemaglobin could be low as this would cause shortness of breath also. The should do an echocardiogram or muga and bloodwork.
Debbie in North Carolina

[Stephanie]

Thanks for the responses, ladies.

My mom just had a muga a few weeks ago. Although her numbers had dropped, it was still 64. Her PET/CT shows a slight increase in her pleural effusion, but she's not coughing like she does when the effusion is a problem. Her bloodwork gets checked every week and is always fine.

Since the symptoms came on very suddenly, within a few days of starting Tykerb, I feel they must be Tykerb related. We haven't talked to our onc yet--my mom wants to wait a few more day to see if things settle out.

I say "our onc" b/c unfortunately I was diagnosed with breast cancer in June (at age 38). Ironically, it's HER neg, after all these years of following this board for my mom. Anyhow, I'm starting chemo the week after next, and I'm so afraid of having us both out of commission (I have young children).

Anyhow, sorry to digress. I have another question that I'll start as a separate post, but also ask here. My mom's onc has her on Tykerb continuously, with no break between cycles. We understand that the regular dosing is 3 weeks on, 1 week off. My mom wanted me to ask what kind of Tykerb cycle all of you are on?

[hutchibk]

Actually - the only dosing I am aware of is constant... I am on non-stop Tykerb. Xeloda is the one that I do 2 wks on and 1 wk off...

[Esther]

Stephanie, I had some SOB issues when first on T/X. I got a prescription for Advair, and used it as needed.

It took care of the problem and increased my energy as well, as SOB can cause fatigue as well.

[Stephanie]

Thanks, Esther. I"ll let my mom know about the Advair. She's getting so weak that it's hard for her to eat, and the weakness appears to be entirely from the Tykerb.

Hope to see you at the October get-together in San Marcos!