shortness of breath with Tykerb
 

Has anyone else experienced a shortness of breath, kind of a wheeziness, from Tykerb? My sister started on Tykerb a few weeks ago. She is having a tough time with the side effects (nausea and diarrhea are pretty bad) but now also has a shortness of breath that came on fairly suddenly and improves when she stops taking Tykerb (her onc has taken her off for a week because she was getting so weak). I just wondered if this has happened to anyone else.

Re: shortness of breath with Tykerb
 

It has not happened to me, but the information about Tykerb states that a possible side effect is lung inflammation. I hope that your sister is beginning to feel better.
Best regards,
Barbara H.

Re: shortness of breath with Tykerb
 

My daughter had this side effect when she was taking Tykerb and Taxol in a neoadjuvant trial. They weren't sure whether it was from the Tykerb or the Taxol. It was connected to a drop in her red blood cells and consequent anemia. Would they consider a blood transfusion for your sister? What does her oncologist say? Kiri was also diagnosed with pericarditis, collection of fluid around her heart, also due to the chemo. None of it was more than a nuisance and a pain until she had a gallbladder attack and had to be taken off the clinical trial. Again, there might have been a connection between the buildup of sludge in her gallbladder and the anemia. Kind of a domino effect.

Hope your sister feels better soon and can resume her treatment. Has she had surgery yet? I wish you both good luck. Hang in there. It gets better. :-)

Re: shortness of breath with Tykerb
 

Hema has it occassionaly

Re: shortness of breath with Tykerb
 

Sorry to hear about that happening to your sister.I never had shortness of breath but I know Tykerb can affect the heart. I imagine she has spoken to her doctor about it.
Hope she does well soon.
Trish

Re: shortness of breath with Tykerb
 

Thank you all so much for your input and your support. Pam stopped taking Tykerb for a week because the side effects were so severe and the breathlessness went away almost straight away. She is now taking it again, and the wheeze is back. Her doc thinks that it somehow triggers her asthma which she has had for years.
She has severe nausea and diarrhea again and is thinking of stopping taking it although she is pretty much out of options. I am thinking that if she reduced the dose (she is taking 5 a day) and built up slowly it might help? If anyone has any thoughts I would be so grateful.
Best wishes
Leigh

Re: shortness of breath with Tykerb
 

I had Tykerb( 5 daily) in combination with Xeloda (4 daily I think) and the side effects (vomiting diahoerrea, mouth ulcers) were so severe I was hospitalised twice with dehydration. I had to stop for a few days each time. It had a very good effect on my liver mets so I resumed at a lower dose (3 /day of Tykerb and 3 /Xeloda). It was still effective for a good while. I am now back on Tykerb (combination below) but only ever take 3/ day and have a few says off every couple of weeks as I get broken skin and very dry eyes, sometimes hand/foot syndrome. It is worth persisting with Tykerb at lower doses if it is having the desired effect on the cancer. I hope your sister is going well, she is lucky to have you on her team,
Trish

Re: shortness of breath with Tykerb
 

I had pretty bad shortness of breath when on Tykerb/Taxol. I was in a clinical trial for taking Tykerb instead of Herceptin in the adjuvant setting (Stage III). It immediately affected by voice, (think raspy like the Godfather), and eventually made me so short of breath that I could not climb a flight of stairs without gasping. I also was very dried out, and developed almost unquenchable thirst. After 6 weeks, I got double pneumonia. All symtoms went away once I dropped tykerb and started on herceptin/taxol. Since I could not tolorate it at the recommended dose for a herceptin substitute I was then given a full year of herceptin. Hope this information helps you.

Estelle

Re: shortness of breath with Tykerb
 

Thank you so much for your responses. Sadly my sister passed on June 10th. May I wish you all the very best. I am in awe of the courage and dignity that I have found in this community.

Re: shortness of breath with Tykerb
 

I am so sorry to hear that news. It must be a difficult time for you but I'm glad she had you as a sister.
Trish

Re: shortness of breath with Tykerb
 

Pamuk,
I am very sorry for the loss of your sister. I got such a shock when I read your post. She was lucky to have you on her side. Good wishes to you and your family.

Re: shortness of breath with Tykerb
 

So sorry for your loss. Our condolence to you and your family.

Re: shortness of breath with Tykerb
 

I am so sorry for your loss. Your sister was lucky to have you on her side, advocating for her. My prayers are with you and your family.