is there anyone treat it only with Navelvine for liver mets - Page 2

Sheila · 04-24-2008, 11:06 AM

Lily
If the Dr Sassy is talking about is her Dr I met in San Antonio 2 years ago, he is a gem!!!! Please make an appt. and get another opinion....time is of the essence!
Love and Prayers to you Lily.

chrisy · 04-24-2008, 11:41 AM

Oh Lily, I am so sorry, and so surprised - it seemed like your doctor has so far been very creative and willing to try the "new and different". I think it sounds like HE may be out of ideas - but someone else may see different options. Maybe as he has seen several treatments fail or work only a short while, he believes something completely different will be a better shot.

You have gotten good input so far - another opinion, take someone along. I'd add, write down all your questions and try to get more adequate explanations. Specifically, WHY you cannot try Herceptin with another agent - my doctor specifically still considers Herceptin and Tykerb as options to pair with future chemos, even though both have "failed" to hold the cancer without chemo. You may still get some synergy adding Herceptin.

And WHY no taxanes, especially if taxotere worked for you in the past. There is no "lifetime max" on those as with Adriamycin, and it actually is very common to try another taxane (taxol or abraxane) in your situation.

On the other hand, remember that Navelbine is strong medicine, even as a single agent. Glad you are at least getting that - and that you found out quickly that the Tykerb/Xeloda was not doing the trick.

I do not have much knowledge on the estrogen stuff...but would be interested in you seeing "the good data" that it interferes with chemo.

Lily, I think of you constantly. You are a strong fighter and advocate for yourself. I know you are frustrated (with good reason) but do not give up. There are still options that can work for you and get that #$*($&^cancer back in control.

Much love
Chris

Bill · 04-24-2008, 07:26 PM

Lily! Please keep us posted and let us know how you are doing. You are a fighter and a true Tiger, Lily. You are in our prayers, TigerLily

Becky · 04-24-2008, 07:42 PM

Dear Lily

I am so sorry that I didn't read this sooner. I am not even going to read everyone else's responses - I am justing responding.

First, breathe. Then call the cancer center you go to and ask them to make you a full copy of your chart. Second, call your oncologist. Even IF Herceptin or Tykerb don't seem to be working for you, maybe they will help the Navelbine along. I think you should get another opinion on this but Herceptin won't hurt you.

Also, if a drug has worked for you before (like Taxotere), it can work again if it has been 6 months since the last infusion - so you can try it again.

Make another appointment with another oncologist as soon as you can. You need to find someone who you can be a partner with. Someone who understands that anti Her2 therapies and antihormonals work together with or without chemo to keep cancer in check. You should be trying Faslodex shots.

Perhaps it is not the Herceptin or the tykerb that wasn't working but that Tamoxifen or no antihormonal was working and you need a change there (like Faslodex). But above all, you need someone who will try to work with you and work with you logically. If you are Her2+ you need a drug for that. If you are hormone positive, you need a drug for that. And sometimes you need chemo to smack back the cancer harder.

You are stronger than the cancer and stronger than your current oncologist and you CAN do this. You can, you can, you can and you know you can.

SoCalGal · 04-24-2008, 08:03 PM

Hi Lily-
I like Becky's advice. And many others gave really good feedback and very good ideas. Me personally - I'd like to call your oncologist and have a little chat fest with him. What an idiot.

So - you are going to make a plan and move forward. Dr Glasby at UCLA explained to me that if Tykerb didn't work he thought it should be combined with herceptin. He's a big believer in synergy and putting more than one roadblock in the way of her2.

I will say that I feel the one thing you MUST do is have someone with you who understands cancer-world. It will make a HUGE difference in how you feel and also it will eliminate any language issues. It's so hard not to panic - try to remember that we are all here with you.
xoxo
Flori

PS I will try not to take it personally that I was omitted from the "smart girls" list although I see RB is listed so I feel a little better

Jeanette · 04-24-2008, 08:23 PM

Lily, I really don't post that often, but I really think the time has come, when you have to kick a** and take names later. Dump this Onc and find some one who will go to bat for you. I hope nobody takes offense at the language, but it totally pi**es me off when we are treated like this. You go get a new onc. Lily you are a wonderful woman and should not be treated this way. Hugs and Blessings to you, Jeanette

Bill · 04-24-2008, 08:29 PM

I wasn't listed as a "smart girl" either, even though Sassy said I was an honorary Sister. In retrospect, maybe it's because I'm neither smart with chemo. or a girl, so that makes sense. Lily, you stay strong!!!

lilyecuadorian · 04-24-2008, 08:47 PM

To all my smart sisters and brothers, I want to first thank you all, in person...(get a snickers bar - you'll be here a while).

Sheila,
PinkGirl,
Kareng,
Tonya (Faith in Him [BTW: like that name]),
Marcia (SoccerMom),
Joan_M,
Barbara H.,
Suzanne( mimiFlower07),
WomanOfSteel [Can I borrow the red cape some time?],
Hermiracles,
Caya,
Sassy,
Sherry683,
Paty,
Bill,
Kim in DC,
Julie2,
Chrisy,
Becky,
Flori,
Jeanette,
and all the others...

Ugh...

Thank you all! It has made us feel stronger about our decision to go with another Onc. We've been considering it for some time and, with the recent setup back, you gals (and guys [bill]) have helped us feel better about our choice. The language is not really the barrier here but the attitude that it's another patient or that the patient is to much trouble. Or knows to much.

Furthermoore - Thank you for your time in replies, every single one, it means alot to me. I love you all of you from the bottom of my heart.

....

Now, for a little humor that Lily didn't want me to add... If I ever when an oscar or 'something' they'll need to que the music a little later becuase this list is getting very very long. Thank you.

Bill · 04-24-2008, 09:26 PM

that's funny! and the list will get longer and longer,
because we all love you guys and we are all in your corner. I'm going to keep my avatar like it is, because it is a good picture

PinkGirl · 04-25-2008, 12:56 PM

Hi Lily,
Just wondering how you are doing today? Did
you have any luck with the insurance company
and being able to switch oncs???? Hope you
are having a good day and good luck with all
of this.

Mary Jo · 04-25-2008, 01:19 PM

Hello Sweet Sister.................I am only wanting to give you my love today and asking God guide you a long your journey.

The ladies AND gentlemen all gave you wonderful advice....and I pray you have a new onc. real soon.

Wrapping you in prayer today dear Lily...

Mary Jo

Andrea Barnett Budin · 04-25-2008, 05:24 PM

Sweet TigerLily, We all love you. I just wanted to add my name to the petition! I second everything said. GET A NEW ONC (maybe Sassy's). KICK HIM TO THE CURB. I am so displeased with his attitude and his seemingly poor opinions, I have no words... And I speak English pretty well. Get over him. Listen to Sheila and Becky! And everyone on the long list of smart girls (and bros). Pretty much everyone who chimed in. I won't reiterate. Just want you to know I ECHO, ECHO, ECHO *everything* they all said!!!!!!!

Sending prayers and love to one of the dearest people it's ever been my honor to meet... Do not despair. It is time to move on. Please keep us posted, as we are all with you and your beloved family in this fight, Lily.
With huge hugs always,
Andi

jones7676 · 04-27-2008, 11:42 AM

I agree with the group....you need someone who wants to try harder! I'm angry at the doctor for not treating you better. I also understand your frustration - I'm feeling the same way about my oncologist. I read about all the people on here that have doctors who listen to them and really seem to care. Please keep us updated on how you make out.

sassy · 04-27-2008, 12:03 PM

Lily,

The onc I recommended is the one Sheila, Joe, Christine and others met in San Antonio. When he left me, he told me that everything that we had done was exactly what he would have wanted his wife to do had she been in my shoes. So you know he will treat YOU. You will be a team. He will also talk to you, explain, discuss etc. My visits with him were always long, because we talked about any new BC treatment developments since my last visit. When I shared info from this site with him, he followed up on it. As a bonus, his wife is an endocrinologist, and they must surely share knowledge.

Kavy · 04-28-2008, 03:18 AM

Lily,

You have already had great advices from our sisters and brother. I am glad you decided to look for another oncologist because yours sounds like my former oncologist with whom I had a lot of problems and who asked me 'Who is the doctor?" when I insisted on having Herceptin after mastectomy instead or with radiation. I did what he wanted, and I regret so much, because I stayed without chemo for 3 months, and I went from Stage III to Stage IV as the cancer spread to my liver and lungs while I was on radiation treatment. Nowadays I would run away from any oncologist who had this kind of attitude.
I also had a great response to Taxotere when I was diagnosed, so I asked my oncologist if I could use it again in case I needed it, and he said he would try Abraxane/Herceptin instead (another Taxane). Why can't your doctor try it too? Also, I had Nalvabine for 18 months combined with Herceptin for my liver and lungs mets with great results. I do not see why your doctor is not willing to try this combination. It does not make sense to me. If you are Hers2+, you do need more than just Nalvabine.
I am praying that soon you will find a great oncologist, maybe Sassy's, with a good treatment plan that will fight for you.
Hugs,
KarlaV.