Cough from Tykerb...ANYONE???

[Sheila]

Just wondering if anyone else has developed a cough from Tykerb...not a deep cough, more of a tickle that creates a cough and you cant stop. Mine seems to be getting worse the longer i am on it. I was thinking Nancy you had this problem.
I am on 1250 mg or 5 pills each day and herceptin every 3 weeks....this is starting to bother me...I'm becoming a cough drop addict!

[Joe]

Shiela,
I've just sent you a PM...Maybe its just your anual bout with nemonia.

Warmest
Joe

[Sheila]

AHHHHHHH, dont say that....I am wondering if its the vocal cord issue...still or something from the Tykerb...it seems to be more frequent...had my scans, and they were mixed reviews...of course they are being compared to scans from before Navelbine, and before no treatment during the Tykerb denial 2 months.
The nodes in my neck are all but shrunk to nothing, but the scans show marked progression in axillary and chest (mediastinal nodes)....I see the Dr in 10 days....wish I knew if this was true progression, or some improvement, since right before starting Tykerb....gee, that was my 4th CT in a year.....not liking all the extra radiation!
Trying to stay positive

[vlcarr]

Hi Shelia,

I don't remember having a cough when I was taking Tykerb. Keep staying positive!

[chrisy]

Sheila,
I think I associate cough more with my herceptin and herceptin-derivative treatments. Don't remember that with Tykerb.

[Nancy L]

Yes, I had an uncontrolled cough starting when my vocal cord paralyzed from the cancer 7/08. I used so many cough drops in 2008/2009 that I was ready to buy stock in the cough drop company. I did not go on Tykerb until 3/09 so it wasn't the cause of my cough. I have been on Herceptin for over five years and it never caused a cough.

My cough improved some after the incisional biopsy when they removed six nodes and as much of the cancer as they safely could. But the cough really improved after the Thyroplasty. I was prescribed a high dosage (4 X normal) of Prevacid after surgery and while I was taking it the cough pretty much went away. But I have found Prevacid (and other proton pump inhibitors like Nexium) and Tykerb do not mix, at least for me. I felt very ill everyday, but once I stopped the Prevacid, I felt decent again. But I have an occasional cough now which must be from acid reflux. They really do not have a lot of data on contraindicated drugs with Tykerb, so be careful. The cough may be from some other drug you are taking---many of them have cough as a side effect. Or because you have a paralyzed vocal cord, it may be the gap in your throat. Have they suggested the Thyroplasty? I am so happy I had it done. If you want to know more, let me know.

I am still taking 750mg Tykerb at bedtime and Herceptin every three weeks. Next scans are at the end of March for me.

Hope you find some solution for your cough. I know how draining it can be. For a while, I had to take a cough syrup inorder to get any sleep at night. It (Tussionex Ext-Rel) really worked well.

[yankeebikachic]

I have had a tickle in my throat for a long time now, my allergies had been bad though, then I had a nasty cold a couple months ago, now still having sinus yuck to deal with. Yes, the tickle is irritating. I just try really hard not to cough as coughing makes the tickle even worse!

[SoCalGal]

Yes, I have had an increase in allergy type symptoms, s/e for sure of Herceptin & Tykerb but don't know which. I think it was the addition of herceptin, since I was already on Tykerb. I buy Riccola from Trader Joe's by the dozen, always carry water & often sound raspy. I did notice that the raspy quality is related to dehydration for me, so the increase in fluids has helped my voice not go hoarse, but the raspy-ness never really leaves. Interesting comment about prevacid, since I've used this drug for years, and did not know about the interaction w/tykerb. If I skip the prevacid, I can tell right around the 28 hours later mark. Will have to ponder this and discuss w/my onc for a solution.
Hang in there, Sheila.

--Flori

[Nancy L]

I get my sugar free Ricola at Costco---six bags to a box. I was buying 2 boxes every week which gives you an idea of how bad it got. Keep in mind that they had me on 60 mgs of Prevacid dail which is four times the normal dosage for an average male. I know the correlation for me is real but it may be my individual drug sensitivity to Prevacid/Tykerb. My goal is always to find the losest dosage of any drug that will solve my problem. I tried 15 mg of Prevacid last night when I went to bed and I don't feel as good today.

Flori---I see you live in Beverly Hills. Do you go to UCLA or some other oncologists in the area???

[LoriG]

I have been on Tykerb for about 6 weeks and in the last two weeks have developed a cough like you describe...more of a tickle in my chest really. I don't have big coughing attacks, just a cough or two and then I am fine until I do the same thing again later. I was also sick with a pretty bad cough about 4-5 weeks ago so not sure if it could just be a post-viral type cough that is hanging on. I worry mostly that it is a symptom of lung mets. Does the paranoia ever get better??!!

[LoriG]

Sorry, Shelia. Just saw your update about progression on tykerb. Hopefully the next combo will work better for you! Hugs.

[Karen Wheel]

Sheila- I have runny eyes - and a cough too - but mostly the first week after the Herceptin --- not enough to become a cough drop junkie - but it is a little bothersome. I have 3 more months - so praying I am drug free from then on!

Have you tried a hot water - with lemon and honey - it seems to help me ... I drink it off and on in the day. Also, the lemon helps regulate (alkaline) the pH of the body - so I feel I am killing two birds with one stone! :-)

Good luck --- Karen

[indeed]

Hi, just did a google search. Tykerb and cough and came up with your post. I started Tykerb on Monday and began coughing Wednesday night. Continues today... I had this same cough when first diagnosed with lung mets, and went to a pulmonologist to discuss whether I should start on Tykerb because I had pneumonitis from radiation. Held off and used only xeloda for 3 rounds, cough went away, then started Tykerb Monday... I am so confused!

[Estelle]

I had a cough and extreme drying throughout my body on tykerb. I sounded like the Godfather, and had extreme thirstiness. I also developed shortness of breath and double pneumonia (walking type). I was taken off tykerb after 6 weeks and given a full course of hercepin instead. My reaction started as a tickle in my throat that got progressively worse. Listen to your body. Make adjustments if necessary.

[indeed]

Thank you, Estelle.
Thought I would try a few more days and see if it got better. I will call my Doctor on Monday if this does not resolve. My urine seems really dark and I am getting nose bleeds, thought I would buy a humidifier today!
Wendy

[Estelle]

Yes, my nose was very dry, and I got nose bleeds. I used a Netti Pot. You use it to pour water through your nose - sounds weird, but it is really not bad, and it really helped sooth my nose quite a bit. They are available at most pharmacies.

[indeed]

Thank you, Estelle! I am using a neti pot and looking at buying a humidifier for my bedroom. Today I've developed extreme diareah. Ugh!

[7andcounting]

Hi,

I'm w/ Chrissy, I have had a rotten cough, but I'm on Herceptin and not Tykerb. It seems worse in the morning and the evening. I have coughing fits like you mentioned, Sheila, and it feels like you described as a tickle. Very annoying!

[Karen Wheel]

I had a cough for usually days and sometimes weeks after Herceptin treatments.... I think its pretty normal actually. In addition I had a really bad reaction the first treatment of Herceptin and they kept me an extra 4 hours or so after to make sure that the anti-histamines and steriods kicked in as I was coughing so much I could barely breathe.

Thankfully.... it went away after the year of treatment and within a few months I felt better and better.

There is hope at the end of the year... hang in there! For ideas on what to do ... try to keep some mints or cough drops with you at all times --- I used them daily as when the tickle would start there was no way to stop it unless I had a cough drop... try it. :-)
Karen

[indeed]

Is it possible that this cough is from reflux? I know my stomach is totally messed up, so maybe I am having reflux at night and it is irritating my throat? The diareah is better today... As long as I eat lots of carby starchy stuff to soak up the acid?