Still waiting for Tykerb!

[Sandy H]

Well, here it is going on 10 weeks. Was told today, after signing forms, it would be here on Monday Aug. 28th. I did tell them I just don't think we should have to wait this long!! She said its because I am the first to get it at my hospital and so all the paperwork had to be done and the next patients it would much easier and not take so long. I told her I would hope so and that would be wonderful but it still does not help me. Patients can die in that length of time!!! I felt bad because last week I got angry with the Data Manager and she called me every day to see if I was o.k.!!! I told her I am sorry I am wasting everyone's time on so much paperwork as it seems that is all I have heard. I told her my cancer isn't hearing a word she is telling me as it keeps right on working eating up my body and killing me. My skin mets do not show up on any scans, or tumor markers so it looks as though I am fine. I told her when your chest feels like it is covered with bacon fat burning and nothing stops it then 10 weeks is a long time to wait!!! Well, I had to vent and so we continue to wait and I know its only 7 more days but that is still a long time when bacon fat is on fire!!!! My heart goes out to others who may be in the waiting mode. Looks like if you are the first one to get it at your facility then you have a long wait. I asked her what about those that don't have the time to wait?? I am praying its not too late for me. Thanks for listening to me vent. I had a call from our dear Angel Christine last evening and I felt so much better after talking to her it made me feel like someone really cares about us!!! hugs, Sandy

[Maggie]

Sandy,

I'm so sorry you have to wait so long for the report. How terribly scarry all this waiting must be for you. I can't even imagine!

Please keep us posted!

Hugs to you,
Maggie

[Becky]

Dear Sandy


I am thinking about you all the time. It is hard to always stay so strong. I am amazed at you, your positive and fighting spirit. The wait will be over soon. Is there something (like Xeloda ointment) that your onc can give you to help relieve some of the skin symptoms and put that at ease for a couple of days? I am sure this is a mundane statement on my part as you have been waging this battle for quite a few years and very successfully too. You are a hero to all of us.

Big hugs and kisses to you. I am praying hard and Monday will be here before you know it.

Love, Becky

[RhondaH]

Take care and God bless.

Rhonda

[Barbara H.]

Sandy, I do care about you and the thought of what you are going through with the skin mets sounds awful. I hope that your Tykerb arrives on Monday.
Best wishes,
Barbara H.

[Sandy H]

Becky, I never thought about the xeloda cream. I talked to my doctor about it last year and he said it would be worth a try and I forgot about it. I may ask him about it. He said it could be compounded. I love this site always someone ready to help and give us suggestions. We all understand each other in a nonjudgemental way. Anyway, I am going to camp Thursday evening and returning Monday in time for my appointment. My husband went this past weekend and I chose to stay home so did not have his support. I love it there no phone, TV, or doorbells ringing or appointments to worry about. I can listen to music or have it quiet. Thank you all for encouragement its what I need right now. hugs, Sandy

[chrisy]

Sandy,

I think about you every day and when I saw the title on your post I just let out this exasperated ARGGG (or something like that). You are certainly entitled to vent and although you felt the need to apologize to your paper-shufflers, don't ever say YOU are wasting THEIR time. I think it is the other way around.

It does sound like they do care, are on your side and doing their best, but they simply cannot understand it or want it the same way you do. I bet your description of the pain you are in got their attention - it sure got mine! I don't think I'll ever be able to eat bacon again (probably a good thing)

I'm so distressed you are having to go through this and hope with all my might that they do NOT miss their promised date. You're a true pioneer - sorry it has been so difficult. And don't even THINK about it being too late!
Much love,
Chris

[lindaw]

Dear Sandy

I haven't posted much lately I am very tired - started radiation last week after gemzar failed. I have been watching , waiting and hoping each time I look I will see your email saying you have Tykerb. I will also let my onc know how long it takes cause I think i may be the first to ask about ithere.

Keep waiting and enjoy that break.

love
lindaw

[IRENE FROM TAMPA]

that you are STILL waiting...

I certainly know what that is like. But it does sound like you are getting very close now. If you have signed the consent forms, had your echo, CT scan and they are formerly enrolling, it should be soon like they say. One they get the drug they will give you a quick look over and hand you the drug and away you go. Do you know the dosage for the Xeloda?

I was told 3300 mg daily was the starting protecol. I have 3 days left of my first cycle of the Xeloda now. Thursday is my last day for first cylcle and we leave on Friday for our trip. I have blood drawn on Wed. and see the onc on Thursday for results. Normally its drawn after 3 weeks but since we were scheduled to leave on our trip, we have to do at the 2 week period. We are all trying to work as best we can with the time frame of the trip. It will work out. I think they may have to reduce my dosage though of the Xeloda since I am getting mouth/throat sores and a bit of upset stomach. Great way to travel huh, but got to do what I got to do. Hopefully a lesser dose will work out for me. I took Xeloda a few years back and had to reduce then also. If I wasn't traveling it would not be so worrisome.

I will check in before I leave to see if you have heard anything new if not have a great time camping. It will do your mind and soul a lot of good.

Good luck Sandy

[tousled1]

Sandy,

Sorry to hear the frustration you are going through. Hopefully, as they promised, the Tykerb will be here soon and you can go to camp and relax. My thoughts and prayers are with you.

[Sandy H]

Irene,m my oncologist said I need 3300 mgs but it comes in 500's and he says he doesn't like splitting chemo pills so it will be either 3000 or 3500. I told him better go with the 3000 because that is what I was on last time and it killed my feet at 3 months. Was unable to wear shoes! Have you had the rash on the face? He told me it can cause one like acne. I am so happy you are going to go on your trip. We all deserve trips and as many as we can do. hugs, Sandy

[rinaina]

I feel for your frustration and everyone else's on here. There is too much of it. I pray the next 7 days go quickly for you and that tykerb will be the answer. Hang in there is all I can say.

[IRENE FROM TAMPA]

Did you doctor say if the rash was from the Tykerb or the Xeloda?
I dont have a rash. So far the mouth sores and upset stomach and I am thinking that is from the Xeloda. And I know that the feet/hand thingy will come too. I had to deal with that the last time.

FYI - and your onc should know this. Xeloda does come in 150 mg pills so it does give them more room to play around with dosages if need be. I really want to stay on the protocol dose of 3300 mg but lets see what developes.

[sfernando]

Sandy, at least the paperwork has been set in motion and you have a date to look forward to. I hope there are no delays, and I hope it works miracles on you.

I've been trying to get lapatinib, now known as Tykerb, for over a year, a few months before anyone at the hospital knew what I was talking about.

Last month, a scientist came to the hospital with guidelines for compassionate use, of which I qualify. I asked if I could get it and was told they would check. This month I was told that the tumor board decided not to apply because it would come in too late for me, that I would be dead before it could get here in Hawaii, (Trippler Army Medical Center) due to all the paperwork.

I've been on continual high dose chemo since May 05 for lymph system tumors and have about run out of options, being that I'm hormone negative and haven't responded to herceptin since month three. My last ct scan shows multiple small tumors now in my lungs, and I feel they have just given up on me.

Someone who reads this board asked me to ask Joe for the name and contact number of the Tykerb person. Joe? Is there a way to cut through the excess time required to receive Tykerb as compassionate use?

Any help on expiditing this may help to extend my life. I really want to see all three of my children grown and graduated from high school, but that would take 6 more years and a miracle would be needed for sure.

Thanks for any assistance,

Sharon

[Joe]

Sharon,

I emailed you GSK's number. In the meantime contact:

Lapatinib EAP Call Center, Kealakekua, Hawaii, 96750, United States; Not yet recruiting
G. Kashef 888-489-5372

I don't know if you ever read Ginger Empey's story about the Herceptin Clinical Trials, but she was the first one recruited because of her persistance.

Regards
Joe

[sfernando]

for your amazingly quick reply. I will be taking this info with me to the doctor this morning.

Sharon

[sfernando]

According to my oncologist and her conversation with the drug company, Tykerb has not been relased anywhere for compasionate use. It has been released for expanded use, sort of like a less strict protocol.

In order to qualify, one must not qualify for any other trials. She says that even though Herceptin failed me, there is a trial in another state that is testing herceptin with tykerb, that I would qualify for, so I don't qualify for Tykerb that way.

She said the projected approval date is early 2007, perhaps April.

Can anyone verify this information, that it has not been released yet except under the expanded (or expansion) program? I feel like I've had so much conflicting information I'm going to explode.

Sharon

[Joe]

Sharon,

I believe they mean local trials. I don't think another state qualifies. GSK's official release in on our clinical trials page.

Regards
Joe

[Lisa]

Sfernando,

Is Hawaii on another planet? How could they possible tell you that you'd be dead before you could get the Tykerb???

Since Sept. 03, I've dealt with mets to the liver, brain, bones and lymph nodes. I've been on one chemo after another. And I'm still hanging on. Do NOT listen to the tumor board. In fact, why not send them a dozen black roses?

Love and light,


Lisa

[RobinP]

Boy, I am surprised how hard it is to get Tykerb. I just hope it is FDA released soon. I hear mixed reports of that date. Is it this fall or next year?