Are you taking Tykerb / Xeloda?

I am taking tykerb 1ooo mgm a day and I am on navelbine chemo every week---I just wondered what the tykerb rash looks like--I have some red spots on various parts of my body--they itch and are sore---I have been on Tykerb since September and my dosage had to be taken down as my wbc count went to 1.o--hair came out--mouth sores were ugly--diarhhea--things are better for now, and I sure am glad to be able to share and hear what other people have for information, I am a 9 yr survivior as of 11-17-07 and it has been a long winding road.  I have been on many meds, adramycin and cytoxin, taxol, herception for years, taxotere, navelabine, xeloda, radiation x2.  I have Her-2 type cancer--I have had a masectomy in 2002, then in 2003 it came back in the chest walls--breast cancer of the skin--looks like lil red bug bites and it has been a challegne every since--it goes away with some of the meds, so my Dr decided we would try Tykerb, and we can see it working, the red areas are looking pretty faint right now!!!  Ok looking forward to hearing from everyone!!!

Linda,



Just was wondering if anyone's mentioned some curcumin for the the skin mets? It's not real great in ER+ mets, but it's ok for triple negative.



Maybe you might check, since those spots are lingering, if it's o.k. in HER+ states. With ER+ it interferes with various CYPs for the hormones used to fight the ER+ cancer. I just found this out.



Anyways, curcumin is felt helpful in chemo resistant states which can arise after multiple chemos.



Good luck,

Tender

HI TENDER,

THANKS SO MUCH FOR THE INFO ABOUT CURCUMIN, AS OF THIS DATE ,THE AREA IS VERY FAINT,NOT THE MEAN RED WE WERE SEEING IN SEPT. AND THIS IS WITH THE TYKERB AND NAVELBINE THAT I AM ON.  BUT I WILL CHECK WITH MY DR. IT IS SOMETHING FOR US TO THINK ABOUT SINCE I REALLY HAVE GONE BACK AND FORTH WITH THIS FOR  A FEW YEARS.  LOOKING FOR ANY NEW INFORMATION ALWAYS.

LINDA 

Hi.  I've been onthe Tykerb for just 2 weeks and this weekend I broke out in an awful rash.  Several of you have mentioned a cream that worked very well.  Do you have the name of the cream?

wow this is very interesting for me since onc told me if my path. is indeed bc then tykerb and xeloda.  i thought since tykerb was a targeted med no hair loss.  please don't say that is causes hair loss.

and dear God i gained 50 lbs in late 90's with 5 years of steroids.  the last thing i need is more weight gain.  i know i'm putting the cart before the horse but i'm one of those need to know people - too much medical training i guess, lol.  well i guess whatever it is i'll have to deal with it.  that's it.  hugs

Looks like everyone has ceased posting here.  Please, if any of you still visit this chat room, let me know by posting a reply.  cliffdrive

I have done very well with Tykerb.  All my nodes have either dissapeared from the scan or are smaller.  Also, I am again able to work.  Not bad.  But how long can this go on until I have to stop because of the pain and fatigue?  Did anyone have to deal with this before?

RE: Steroids

I am not prone to nausea and vomiting.  Steroids caused sever weight gain for me.  I stopped the steroids and had no problems.  Also, I lost a lot of weight!! 

I'd like the name of the cream if anyone happens to know it too. Crazy itchy. Thanks & Love!

Hi All!!

I am just so happy to have found some people I can talk to, and know that you will completely understand where I am coming from.

I am 37 years old. Original diagnosis Aug 05. Double Mast and 6 nodes involved (nothing on the other boob, but I had it removed at the same time as there is a heavy history of BC in my family tree)

Brain met Oct 06, surgery, total brain radiation and about 4 lots of stereotactic. Thought we had 'got' it, but no, it has reared its ugly head and brought along a few mates to inhabit my meninges.

Have just finished 2 years of Herceptin and have started Tykerb (4 a day) and will start the Xoloda this week. I am hoping for good things from these drugs, although now a tad more concerned about the side effects......

Looking forward to getting to know you. I am from Melbourne, Australia, so anyone in my area, let me know!

Thank you-all of you--!!!

I just finished taxotere, surgery and radiation and my first pet scan should mets to the bone and liver again--

I start navelbine and continue with herceptin--but if that doesn't work-this is next-

I head for vacation next week and I will be very happy and hopeful given these reports!

Amers

Hello, my mother has been taking xeloda for a couple os years and has stopped a few weeks ago. but it seems that fer hand and foot syndrome is worse than ever. Has anyone experienced this? Now she is starting treatment with some high-dose hormone (the same used for women in menopause). Does anyone know about side-effects? She is anxious about gaining back all the weght she has lost during treatment with xeloda... Thanks and best wishes to all of you.

Hi All,

I went to the onc today and had some good (I think?) news. I have been on Tykerb for 2 weeks, and added Xeloda last week. My TM have gone down in those two weeks, and my onc is pleased.

Don't get me wrong, I am THRILLED but I am a tad confused as to my level. It has gone down to 39 (was up to about 50) but I don't know if the levels we have measured here in Australia are the same as you US girls. Apparently someone without cancer can measure up to 31 on these tests (all breast cells express the chemical, so obviously the more you have the more that gets expressed: cancer).

Without sounding too stupid, how can mine be so low when I have a tumour in the brain and some 'activity) in my spinal column? I know there is a blood brain barrier, but would the TM make it into my general blood stream, or is the 39 based on the rest of my body, and not my brain/spine system?

Ahhhh, wish I had a greater understanding of this.

Bottom line is that the Tykerb/Xeloda seems to be effective somewhere!

Hope one of you kind ladies can help me!

I just recently started on Tykerb and xeloda. Today starts my first seven day break off xeloda. I really don't like taking these oral meds. I feel like my cancer is at it's worst and I am on my own taking pills at home. I am tired all the time my stomach hurts...I had a lot of problems with nausea and diarrhea. It seems when our cancer is at it's worst we are left alone to deal with it...does anyone else feel this way???  I also have a lot of problems swallowing the pills I have choked serveral times trying to swallow the tykerb...I have been fighting since 2003 with mets to the liver,bone now lymph glands in trunk of body....I am so tired of hurting and because I look the same having problems with family understanding how I feel on the inside.....hurting,tired,sad.......................

Juliebug

I know the feeling--I cleaned the house, shopped and made dinner--

I finally had to tell every I have had it--I am exhausted and feel --well just weird

Tykerb and xeloda is next for me if the navelbine and herceptin combo don't work.

My neighbor is a research scientist--he keeps telling me to hold on--because there is A LOT on the horizon--

Now -go find joy in something small-like you did as a child-that helps me through the "pookeys".

Amers

I just started Tykerb & Xeloda. I took Xeloda & Herceptin in 2006, stopped the Xeloda after a year. Am having diarea and some nausea but is seemes to be getting easer but I have only been on the two of them for less than a week. I tend to get rashes but have not seen any yet. I took Herceptin for three years until it stopped working. Don't you all wonder what is next?

Gladys from Buffalo