Tykerb, Herceptin combo instead of Navelbine?

[Chelee]

There isn't an orthopedic in my "group" that handles the issues with my bone mets to femur. So I am being sent back to COH to see one of their Ortho surgeons. But since it's an HMO that will take time...time I don't have. The MRI that shows mass on my femur also mentions borderline enlarged nodes within the inguinal region. That did not show on my last PET/CT on 9-21-09. Plus we know the PET/CT showed recurrence to RT axilla, femur, ilium, & possible liver. I feel I can't wait any longer. My onc is trying to delay my care it seems! My onc & COH onc both recommended Navelbine, Herceptin, & Zometa. I told them Dr. Slamon said Tykerb, Herceptin, & Zometa if I couldn't do that TDM1. Both onc said there is no chemo added...so why would he recommend that combo? They both said I had to have chemo in there or it would not work. (Hence the Navelbine.)

I am going to call my onc and tell her I want to do the Tykerb, Herceptin, Zometa that Dr. Slamon recommended. I think it makes more sense since I am so Her2 positive! I have a feeling it's all about cost when it comes to my onc. I just got off the phone from Dr. Slamon's office & talked to the NP. She agrees I need to be on something now. Plus she let me know I have to be off the Zometa a while (wash out period) to have femur repaired. (Sure nice my onc didn't brother to tell me that! I just had Zometa Tuesday!) She (NP) also said there was nothing they saw that would make them think my hip will break. So I thinking I should just get going on Tykerb & go see the Ortho up at COH when it gets approved. I've been a wreck...so much time keeps going by with no trt. Since my TM'ers dropped so quickly with just my Herceptin loading dose...I'm thinking Herceptin, Tykerb will work great for me. I would appreciate any ideas, thoughts, advice concerning this?

Chelee

[Sheila]

Chelee
I hope you get the Tykerb easier than I did....I did get the approval letter today saying the DENIAL HAD BEEN REVERSED BY THE REVIEW OF A MEDICAL DR. If you need info to get it approved, I have all mine. I just received mine last night via mail order, 150 tablets, 1 month supply. I just cant take it until I see if I can get into the T-DM1 trial as I have to be off everything for 2 weeks. I did have my Herceptin this week.....you need to tell them this is URGENT that you get the Tykerb....I would think you can be on it and have surgery...but you cant have surgery on the T-DM1 trials....it states that on the one I am applying for.

[Chelee]

Shelia, After hearing the nightmare you went thur I'm anxious to see what happens now too? My onc might of suggested Navelbine first because it's cheaper & easier to get a OK...especially since I'm an HMO patient? I called the case manager today to let her know I'm not happy with the way my onc is ignoring me. I said instead of the Navy beans I wanted to go ahead and add Tykerb to my Herceptin. I told her this way I could get started on something & still be able to have surgery as far as I know. (I see you mentioned that point also.)

The case manager is going to call my onc & tell her I rather start on the Tykerb/Herceptin...but lets see what happens once my onc finds out? I have Anthem BC HMO...so we will see? Why does my onc and the City of Hope onc both say if I don't add a chemo drug with those it's not going to work?

Chelee

[ElaineM]

I am sorry you are still having problems. The whole thing is so frustrating !!
Can several of the docs involved have a phone conference and express their reasons for their choices to each other? If you can listen in that would be great.
Otherwise does the place where you go for treatment have a tumor board where a group of specialists discuss cases?
I will pray and cross my fingers for you.
Keep putting one foot in front of the other. Hang in there. Keep advocating for yourself. Try to stay positive.

[Pam P]

It seems that seeing the ortho doc quickly and getting the surgery as soon as possible is key here in order for you to be able to move forward with the best treatment. You are such a good advocate for yourself - can you try to push for an appointment soon (develop a severe unbearable pain in your femur that needs immediate attention???). In the meantime it seems that the herceptin is being very effective according to your markers. Adding the tykerb would be good too but from other posts - Sheila - that could be a bigger challenge. I'm sorry you are having to go through this fight for attention and treatment. Pam

[Lani]

Chelee--the orthopaedic surgeon specializing in bone tumors (primary and mets) at UCLA is Jeffrey Eckhardt. Perhaps you could ask your HMO to refer you to UCLA rather than COH and ask Dr. Slamon if he or his NP could put in a call to Dr. Eckhardt's office asking them to see you prompty.

An orthopaedic opinion PROMPTLY, advising whether this needs fixing now(or perhaps even ever depending on your response to treatment), advising whether to continue Zometa (which has its effect over a MONTH after it is given if I understand it) and advising whether you should be on crutches or avoiding any other particular moves while you wait, would seem to be in order.

That way your orthopaedic and oncologic care could be coordinated. Even if you can't get your oncology care at UCLA, at Least Dr. Slamon would know
what your exact orthopaedic status is/how it might impact your oncologic care from someone he might often work with.

If this turns out not to be practical:

I looked up orthopaedics at COH because I had heard it was a small department--it is. There is only one member and here is his CV:

Dominic Femino, MD

Chief, Orthopaedic Oncology Surgery
Professional Experience

2007 - present, Associate Director, Musculoskeletal Tumor Program, City of Hope, Duarte, CA
2007 - present, Chief, Division of Orthopaedic Surgery, City of Hope, Duarte, CA
2001 - 2007, Assistant Professor of Clinical Orthopaedic Surgery, University of Southern California, Los Angeles, CA
2000 - 2001, Visiting Professor of Clinical Orthopaedic Surgery, University of Southern California, Los Angeles, CA
1998, Co-Chairman, Division of Orthopaedic Surgery, San Gabriel Valley Medical Center, San Gabriel, CA
Education and Training

1999 - 2000, Childrens Hospital Los Angeles, Fellowship, Pediatric Orthopaedics
1998 - 1999, University of Washington Medical Center, Fellowship, Orthopaedic Oncology
1994 -1996, Johns Hopkins Hospital, Residency, Orthopaedic Surgery
1991 - 1994, University of Southern California, Residency, Orthopaedic Surgery
1991, Johns Hopkins University School of Medicine, M.D.
1987, Yale University, B.S.

He seems to work with Health Volunteers Overseas so perhaps you could call his office and hypothesizing that he really is a nice guy, see if he will move your appointment up (unless, of course, he is overseas)

Hope some of this helps

[Chelee]

Pam, Due to the pain I am having...that did help to expedite matters. The case manager handling this for me called today & has me set-up to see a Ortho next wk which is quick for them. I just pray the Herceptin continues to knock down my markers till I get something going...this is stressful.

Lani, Thanks for all the information you looked up for me! I SO appreciate your time and trouble. The 1st option to go to Dr. Jeffrey Eckhardt at UCLA cannot be arranged due to my HMO. I paid out of pocket to see Dr. Slamon. I am hoping to change my insurance this Nov. so I won't have all these problems in the furture.
The case manager I called yesterday has set me up to see Dr. Dominic Femino next wk. Yes it is a small Dept which surprises me for COH...he is the only one that deals with these medical issues. The case manager that is handling this for me said that Dr. Dominic Femino tends to be very aggressive in his treatment. COH called today & has it all set-up. I hope to find out we can fix the hip later after I've completed some chemo? I will save the name of Dr. Jeffrey Eckhardt in case I need another opinion now, or in the furture. I would pay out of pocket again if need be. Thanks again for your help.

Chelee