Hair Loss/Thinning on Tykerb/Xeloda vs Benefits
 

Has anyone experienced hair loss/thinning
on Tykerb/Xeloda combination?

Has anyone had positive results with this
combination following removal of a
single brain met and now NED?
Any other ideas?

Thank you.

I'm sure Brenda (hutchibk) will respond on this thread - she's been on this combo for well over a year!

yes - thinning for me, but not loss. I knew from friends on Xeloda that my hair would not come in as thick as normal, so I was prepared, but then a couple of months ago, we learned in some research that Lani posted that Tykerb also comes with 'dermotological challenges' such as thinning of hair... but it is totally tolerable. I keep it short anyway and it is not outrageously thin, but it is also not at all the normal thickness I have had my whole life. But just having hair at all feels good, so I can't complain!

I have been on Tykerb/Xeloda for 18 months for treatment of 3 small (8-9 mm spots) and 5 punctates (pin pricks). We chose to do the drug combo first to see if we could knock them out without any radiation (saving it to the backburner) and it has worked absolutely wonderfully for me. We see no brain met activity at all. I get MRIed every 3 months. If we eventually see any brain met activity, then we will do targeted radiation...

I can't speak highly enough about my experience on Tykerb/Xeloda. I have had VERY little side effect and it is quite the convenient magic potion for me... especially since I also LOVE TO TRAVEL!! I tell ya, it's cool to be able to travel with your chemo in your make-up bag!

had a single brain met
 

I had a single met gamma'd in February and have just had my second mri saying ALL CLEAR. Currently on tykerb/herceptin/avastin. My hair is fine but my nails and skin are not normal. BUT nothing to complain about - just saying.

The gamma knife is a miracle procedure. In at 7 - home by 11. MINOR discomfort and I use that word honestly unlike the doctors who use it to mean pain and suffering. PM me if you have any gamma questions I can answer.
Flori

Flori - we really need to get together, I mean it! I need to figure out when I can come to LA - Oct 14 maybe? LOL - prolly not, but that would be fun, huh?

Anytime after 9/24. Kids will be gone - empty bedrooms and bathroom. I would love a visit. October 14th is a Tuesday. You must have some free miles you can use!

Yes it is a Tuesday - I always know what day my (our) birthday is on... don't know why it matters, but I have always liked to keep up with that. I am due a trip to LA, but geez my schedule is getting jam-packed already for Sept/Oct/Nov. Oh wait, I am going to be in Pasadena the week of Oct 20th, working. I bet I can see ya then! Yippee!

PLEASE let me know - even if only for a hug hello I will gladly drive to Pasadena. (Hey if you want to come early or stay later you are welcome to stay with me after your business is concluded. Bring your man. I have plenty of room with both my kids gone). Even have an extra car:)

FLORI & Brenda
OK, Now I will have to send my almost 31 year old son to chaperone you 2...he was also born on October 14,1977...the day Bing Crosby died.....

Only if you come with him, Sheila - we need to give him a run for his money! ( I remember my birthday in 1977 - that's the one when I turned 18 and was legally old enough to drink. Oh wait, no I don't remember it...)

Brenda,

What is your dose of Xeloda? I'm thinking about adding it to the Herceptin I take already. Even though I had a lung RFA a few weeks ago (and also will not know for awhile how that procedure worked) my onc wants me to do six cycles of Xeloda.

Are your hands and feet red and painful? Do you get diarrhea? I would think not because you do so much traveling.

My onc said she would start will 1,000 mg per day and if I can tolerate that she'll increase the dose to 1,250.

I'm also thinking about dropping Herceptin for Tykerb.

Thanks.

Joan

Joan - I am on the highest dose of Xeloda - 1250 a day, I think. (without the bottle in front of me, I don't remember the actual number). I only got diarrhea sporatically within the first 4-5 weeks that I started Ty/Xel - and then with some dietary discipline and my body getting used to it, I got very regular and have stayed that way for 18 months now. I only get some dry cracks in my heels if I don't remember to regularly lotion up my feet a couple of nights a week, and my fingernails are thin and break easily. But other than that, I have no hand foot syndrome.

Brenda,

It seems like your body has adjusted well to the Xeloda, and thanks for the insight about the possibility of diarrhea being an initial adjustment and also about the using lotion.

Thank you!
 

Thank you everyone for your
insight!

Best of luck to everyone.