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Old 04-19-2011, 11:23 PM   #1
pamuk
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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.
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Old 04-20-2011, 06:20 AM   #2
Barbara H.
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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.
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Old 04-20-2011, 12:19 PM   #3
KirisMum
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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. :-)
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Old 04-21-2011, 01:26 AM   #4
pibikay
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Re: shortness of breath with Tykerb

Hema has it occassionaly
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nodules in both liver lobes secondary
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Taxotrne Zylotec started 16th March
Herceptin added 5th April.9th Herceptin over on 20th Sep '10.Started on Tykerb and Xeloda on 22nd Oct2010TYKERB 4 TAB A DAY XELODA 4 TAB A DAY ONE WEEK ON ONE WEEK OFFZoletrust infusion every 4 months.Lesion in Brain 3D CRT Radiation started on 1st Feb'12 for 20 days ,5 days a week for 4 weeks.Devloped a small lump in breast.Xeloda stopped from 11th April '12.On Taxol.After 3 cycles of Taxol Taxol stopped.Back to Xeloda regime from 3rd July
Herceptin started again on 27th Dec 2012.Xeloda stopped Navelbin added on 7th February 2013.Now on Tykerb Herceptin and Navelbin
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Old 04-21-2011, 06:21 PM   #5
Trish
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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
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5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
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oopherectomy, Arimedex
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liver mets largest 9cm
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Herceptin,
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Taxol + Herc
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Herc + Gemcitabine
8/2008
Herc+Navelbine/vinoralbine
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Herceptin+Tykerb
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Abraxane
12/2010
Abraxane+Tyk+Herc
4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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Old 05-04-2011, 10:44 PM   #6
pamuk
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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
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Old 05-05-2011, 01:22 AM   #7
Trish
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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
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5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006
oopherectomy, Arimedex
12/2006
liver mets largest 9cm
1/2007
Herceptin,
3/2007
Taxol + Herc
1/2008
Herc alone
4/2008
Multiple bone mets,Zometa
7/2008
Herc + Gemcitabine
8/2008
Herc+Navelbine/vinoralbine
10/2008
Herc+Carboplatin+Taxol
12/2008
Tykerb+Xeloda
2/2010
Herceptin + trial drug
5/2010
Herceptin+Tykerb
8/2010
Tykerb+Abraxane
9/2010
Abraxane
12/2010
Abraxane+Tyk+Herc
4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa

Last edited by Trish; 05-05-2011 at 01:23 AM.. Reason: Proof reading
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Old 05-15-2011, 11:24 AM   #8
Estelle
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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
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DX 1/09
two tumors; .7 cm and 1.0 cm, same duct
lumpectomy 2/09
10 positive nodes; scans show no further metastasis, Stage IIIc
AC completed 5/09
Tykerb/Taxol (trial) 6/09, terminated from trial (due to bad reaction to Tykerb) 8/09; switched to Herceptin/Taxol
Taxol finished 10/09
Bilateral mastectomy 11/09
Radiation 12/09 to 1/10
Herceptin finished 7/10
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Old 06-24-2011, 10:34 PM   #9
pamuk
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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.
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Old 06-24-2011, 11:34 PM   #10
Trish
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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
__________________
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004
6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006
oopherectomy, Arimedex
12/2006
liver mets largest 9cm
1/2007
Herceptin,
3/2007
Taxol + Herc
1/2008
Herc alone
4/2008
Multiple bone mets,Zometa
7/2008
Herc + Gemcitabine
8/2008
Herc+Navelbine/vinoralbine
10/2008
Herc+Carboplatin+Taxol
12/2008
Tykerb+Xeloda
2/2010
Herceptin + trial drug
5/2010
Herceptin+Tykerb
8/2010
Tykerb+Abraxane
9/2010
Abraxane
12/2010
Abraxane+Tyk+Herc
4/2011
Tyk+Herc+Femara
6/2011
Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011
Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011
Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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Old 06-25-2011, 02:16 AM   #11
Delaney
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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.
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Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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Old 06-26-2011, 08:36 PM   #12
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Re: shortness of breath with Tykerb

So sorry for your loss. Our condolence to you and your family.
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Old 06-26-2011, 08:48 PM   #13
Estelle
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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.
__________________
Estelle
DX 1/09
two tumors; .7 cm and 1.0 cm, same duct
lumpectomy 2/09
10 positive nodes; scans show no further metastasis, Stage IIIc
AC completed 5/09
Tykerb/Taxol (trial) 6/09, terminated from trial (due to bad reaction to Tykerb) 8/09; switched to Herceptin/Taxol
Taxol finished 10/09
Bilateral mastectomy 11/09
Radiation 12/09 to 1/10
Herceptin finished 7/10
NED
Start Vaccine Trial at Hopkins 2/11
Finished Vaccine Trial 11/11
Continue NED
Port Out 11/11
DEIP Flap 4/17)
8 Years NED 2/17
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