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Posted 6/27/2007 7:35 PM (GMT 0)
I know MK will remember me and maybe some others. Just updating and wondering if anyone is on Tykerb.  Last I talked to MK I was having some problems with tumor marker rising and alot of hip pain. Well, I have a new hip. Had a total hip replacement in March and it was amazing the pain was gone. Have had a few set back, life can't be with bumps. I got an infected port and it was total in my entire bloodstream by the time the doctors decided it really had something. I am starting Tykerb and Xeloda as soon as I get the all clear on the infection. My chemo stopped for the hip replacement so I have been off for about  5 months and my tumor marker has gone from 450 to 1200 so anxious to get it back in control.  I am curious if there is anyone else on Tykerb and Xeloda and if the side effects are managable. I think of you all often and would be glad to here how you are doing. Love, Cyndy tongue
Posted 6/28/2007 3:15 AM (GMT 0)
Hi, Cyndy! Of course you are remembered here! It is good to see an update. So glad to hear about the hip replacement. I've never even heard of Tykerb, but our JoAnnie was on xeloda. She had lots of problems with feet and hands...skin discoloration, blistering, neutropenia, and edema. She often wore gloves because her hands looked so bad. She also had problems with eyes tearing. And dizziness. Her onc ended up lowering her dosage, and that helped curb the side effects significantly. But let me tell you, it kicked butt, if tumor markers are any indication of how good it works. I remember they dropped significantly when she was on it. Unfortunately, she had a hard time tolerating the side effects. Hope you have a better experience than she did. And I hope it knocks a wollup to those marker counts.

Love and hugs...and don't be such a stranger!

BEV (fka bettydaviseyes)
Posted 6/28/2007 4:09 AM (GMT 0)
Hello old friend . . the question is do you remember me???  This is Jackie aka bandlady.  I think I'm a fellow Bone Marrow buddy.  June 18th I celebrated 10 years of survival/struggle with a phone call from my onc saying the rash on my rt. breast and left arm (???) is indeed now IBC, AND he ironically put me on Tykerb.... I knew we were soul mates :-)

We tried Tykerb 1250 mg/day and the "rash" they mention is indeed acne from chin to eyebrows . and the "diarrhea" for me began 3 days after and got up to 10 times a day until we finally stopped Tykerb a week ago. . . Funny thing about cancer . . puts you right between adolescense and Depends tongue

So now the game plan is Xeloda beginning tomorrow . . past experience is fatigue and infection under my finger nails - which began my lymphedema . . ahhhh another story. I don't look forward to it but he is insisting due to the IBC. (By the way other than this little setback I have had two completely clean scans in the past year so I guess the rash on the breast and arm is pretty minor -- Tykerb had also almost made it disappear in two weeks.)

We will try again with Tykerb in a week but reducing the dose to 500 mg daily for a week and increase the daily dosage by one tablet each week to see at which point the diarrhea kicks in and then go back to the previous dose (my game plan which he actually approved!!) 

Enough of my horror stories.  I don't check in much because I'll scare all newbies to death.  But anyone that I have now terrified please know that I am GREAT!  In the pasy 10 years I've seen my children grow, got a now 5 year old grand child, saw my oldest graduate from college and get married (the same weekend - ugh!), changed jobs, got my master's and made many wonderful friends.  Hello again gang!

Hugs to all -- Life is good!!!!

Jackie

your bandlady

P.S.  I'm about to go to Maine on vacation and looking for a Peg Gray -- please let me know if anyone hears from her. 

Post Edited By Moderator (gma) : 6/28/2007 6:54:28 AM (GMT-6)

Posted 6/28/2007 4:10 AM (GMT 0)
Don't know why the thumbs down showed up . . I think Tykerb has terrifice promise

I fixed your thumbs down to thumbs up.  I used the edit pencil symbol.  MK

Post Edited By Moderator (gma) : 6/28/2007 6:56:41 AM (GMT-6)

Posted 6/28/2007 6:51 AM (GMT 0)
Great to here from you Jackie and Bev. We are soul mate Jackie. BMT was 8 years ago March. How long were you on the Tykerb? I just got my shipment today but won't start until after the 4th waiting on blood cultures and a couple of doctor appointments. How long have you been off Herceptin? It is so great hearing from you. I really need to find my way back to this board. I sometimes feel like I am living in this cancer world all by myself. People just don't understand. Hugs & Prayers Cyndy
Posted 6/28/2007 1:03 PM (GMT 0)
Gosh it is good to see your posts, my old friends!!!! You are all special to me! It amazes me how you keep your spirits up and keep on going and doing. I don't know why you feel you might frighten the newbies. You know you can give them hope, too, for reaching milestones in life. Jackie, I can't believe your grandbaby is five years old. I talked to Cyndy a few months ago and it was good to talk to her, now hearing that the hip replacement is a done deal and the pain is gone is wonderful!!! I know you have days that you are not feeling so well, but please find a day here and there to come back and assure us things are going well. Learning about new treatments that work is what it is all about. Hugs and Love, MK
Posted 6/29/2007 6:28 PM (GMT 0)
Cyndy - I took the Tykerb a full two weeks before I had to stop to get diarrhea under control. Don't forget I'm starting it again next Thursday, probaby about the same time you do :) We'll have to compare notes. I took Herceptin before starting Tykerb and then again after quitting so I'm not totally off yet. I did start Xeloda again yesterday with no side effects so far! Hope to hear from you soon!

Hugs - Jackie
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Posted 6/29/2007 9:38 PM (GMT 0)
I think you two need to just keep coming back. Cyndy, I know you have aways felt so alone in this thing, and while you don't visit often, there are many prayers that go out on a daily basis on your behalf from ladies here for you. And Jackie...I would hope that even a newcomer would find you an inspiration. I know you ladies with mets (and that includes our old friend Cathi!) worry about scaring newbies. I would think that they would realize that, no matter how bad it may seem, life does go on. You have all done a lot of living since your dxes, and you have faced bad odds over and again, and yet you keep going. Anyway, you are all heroes, in my eyes.

Love and hugs...
BEV
Posted 6/29/2007 11:28 PM (GMT 0)
Thanks ladies. To encourage the newbies. I was told 18-24 months 9 years ago May. I have see my babies grow up. I attended 2 high school graduations, 1 college graduation, another this next May, my oldest daughters wedding, was at the home birth of my two last grandsons the youngest was delivered by his dad and me as the midwife didn't make it, celebrated the big 50 last summer, last spring went on a 28 days trip to Washington to see the tulips bloom among many other things. I feel blessed for all those things and without this darn battle for most of those events I would have been at work. Jackie, my Tykerb has arrived but I have been put on hold. I thought this blood infection was a thing of the past, went a week with no fever but last night returned and have it again tonight. It is only at night. Go figure. Hugs & prayers Cyndy
Posted 6/30/2007 1:35 AM (GMT 0)
Hi Cyndy,
I'm about as fresh a newbie as they come - just got my Dx of invasive ductal ca this morning - and I have to say that far from scaring me you do give me well-needed hope! My path report is not good from what I can tell but yours wasn't either and look at you! All I want is to see some of those milestones too if I can...if you can smile amidst the fight then so can I so please keep us informed....and blessed by your visits!
Hugs,
KathyV
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