is there anyone treat it only with Navelvine for liver mets

[lilyecuadorian]

After have tykerb and xeloda and fail 5 weeks after ,my doc give it me only Navelvine ...single agent ??? I ask him if is only that drug ? and he said ..are you going to teach me medicine ? .....I was really hopeless and speechless and in shock ...the last time on March 3 when I did start T/X he told me that I never can get herceptin again ...and today he told me that I used all the therapy for her2 (herceptin ,DM1,Tykerb,Xeloda) and he said that I already used taxotere in the beginning ...and I can't used it anymore (Taxotere work for me perfectly ...when I was diag) I HAVE THIS f%#$ caNSER ...and I ask him about how he is controlling my hormones and he said that is "a good data" that hormone therapy docent let the quimo work like it suppose to ...and only NAVELVINE ????????????PLEASE ANY HELP ...please don't let me like this ...I went alone to see my doc ..and with all the opposite that he have for the information over the Internet plus my BIG Accent ....is impossible for me to get some information ...I felt like a dog (no offense to them) go to the doc office for 2 minutes and leave with a prescription that is it ..............any imput my 'smart sisters ...LANI ,BECKY,JEAN ,RB, STEPH,ALASKAANGEL ,everybody please .......please .....

[Sheila]

Lily
My first question is why you are not on something to supress the estrogen....already I don't like the sounds of this oncologist...he sounds insulted because you know as much as him/her! There have been many on this board who go back on Herceptin after Tykerb...and also try a Taxane again like Taxol or Abraxane....even Navelbine and Herceptin....but just navelbine? I would go get another opinion....you have many options, just have to find a good Dr that will fight for you!!!! You are in my prayers dear Lily....wish I could help more like to go to the Dr with you.

[PinkGirl]

Hi Lily,
I know the "smart sisters" will chime in later. You've already
received some good advice from Sheila.

I agree that there are other taxanes that you
can try if your onc doesn't want you back on taxotere.... but I
am really questioning if this is the right oncologist for you.
If you don't feel like your onc is fighting for you then it's
time to find another one.

Compared to all the crap we go through, suppressing estrogen
is easy. This makes no sense to me that you are ER+ and not
doing anything about it.

I hope you can find someone to go to your next appointment
with you. It always helps to have another set of ears there.

Good luck Lily. I know the "propellerheads" will have lots of
good advice for you.

[kareneg]

I agree with Sheila and Pink,

I am so furious with your doctor he should be fighting harder for you! I really can't add anything else like Shelia and Pink did but know I love you and I am here for you.

Love Karen

[Faith in Him]

Lily,

I am so sorry that you have to deal with an oncologist that is not doing their best to help you. You may want to go get a second opinion. Please know that I am praying for you. May God hold you close during this time of decision making.

Hugs,
Tonya

[Soccermom]

Lily,
Someone has to go with you to your next appointment...to advocate with you and for you. Your Oncologist sounds like a jack*ss...You are such a sweetheart and I can imagine how self conscious you might be trying to ask questions and all. Please at the very least take a small tape recorder with you so that your husband /friend can hear what was said at the appointment. Maybe its time to switch Docs...I know this too might be very stressful but he doesnt sound like he is doing all that he should for you.

Big hugs,Marcia

[Joan M]

Lily,

It makes me angry that your oncologist is not fighting more for you. Perhaps you should get a second opinion about the chemo and the estrogen blocker as well. I'm praying for you to get the answer you need for NED. Joan

[Barbara H.]

Hi Lily,
I'm sorry to hear your story. I agree that you need a second opinion and you should seriously consider finding and oncologist who respects your questions and your desire to find the best treatment. I also agree that you should take someone with you to your appointments.
Best regards,
Barbara H.

[mimiflower07]

dearest Lily
I feel just sick for you. You have come into my mind today...just know we are all thinking about you. One of these sisters are going to help you sort this out..then you can kick the onc out the door and find a new one.(i have a few other choice words but i will show some control)
Big hug going out to you. Don't give up Lily!
suzanne

[WomanofSteel]

Lily, I agree with the previous posts that call for a second opinion. You deserve nothing less than complete confidence in your onc. and in return he should be respectful of you and your questions. I go to the cancer institute near me and I am sure that if I spoke another language and was having communication problems, they would go out of their way to find someone to translate or help me. If they can't do that for you, you need to bring a friend who can. Good luck to you and I enjoy your posts. You sound like a very sweet person.

[hermiracles]

Dear Lily - oh Sis - you sound SO distressed http://her2support.org/vbulletin/images/icons/icon9.gif I'm so sorry this is happening to you - you deserve so much better!!!
What's wrong with this Doc that he can't really listen to you or treat you with respect???
Maybe one of the folks here can suggest another oncologist in your area that will really be on your side.
Thinking of you and praying everyday sis
♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥
Blessings
Hermiracles

[caya]

Dear Sweet Lily,

I echo the other opinions - this oncologist does not sound like he is fighting for you, and he also must have flunked Bedside Manner 101 in med school. Please try to seek a second opinion as soon as you can.

And you MUST take someone with you to your appointments to advocate for you and put your thoughts and questions across. I wish I could do more for you, you are such a lovely person Lily. Please know that I am thinking of you and praying for you.

all the best
caya

[sassy]

Lily,

My wonderful former onc is in Pinehurst NC now. That should not be too far from you. He is an advocate for the patient, and very forward thinking in treatment plans. If you would like for me to give you his name and help you get in touch with him, PM me. I'm sure a second opinion would be good and I can't think of a better onc.

[Sherryg683]

Yep, time to get a more caring, compassionate doctor who give a damn. I can't believe his attitude...this is your life. He can go back home to his golf game or whatever when his day is over, you've got a child to raise. My Oncologist told me that since taxotere, xeloda and herceptin worked so well for me, it could always be revisited if we ever needed it. There are plenty of other drugs used to fight breast cancer, I would demand every dang one of them be tried before saying there's nothing else. I'm sure someone will give you a current list of the used drugs today and even trials that may be out there. ...Find another doctor..please..sherryg683

[Paty]

Dear Lilly,

I am so sorry you are suffering like this. It is hard enough to deal with the illness to, in addition, get all this crap from someone who should rather be considered our saving angel- Pequeña, could you choose another doctor? Why aren't you on Tamoxoifen? Do not let anybody take away your peace of mind, I am sure that many of our sisters here could recommend another doctor, even if you have to travel some miles away from home, it is going to be better for you to have a doctor that helps you both mentally and with a better treatment. Keep us posted. Lots of love.

Paty

[Bill]

Oh, Lily, you should not have to be treated like that. I'm not a chemo. expert, but it seems that you should be on more, and your doctor is a jerk. I hope and pray that you can find another one, Love, Bill

[hermiracles]

Good one Sassy! http://her2support.org/vbulletin/images/icons/icon7.gif
I'm always amazed how everyone tries to be so helpful here.
Blessings
Hermiracles

[Kim in DC]

Lily,
Everyone has said what I would have said. I have seen people fail on one herceptin combo and have a response on another! Please seek a second opinion (or third) and take some one with you!!!!!!


Kim

[Soccermom]

Lily,
This one from Sassy...

"My wonderful former onc is in Pinehurst NC now. That should not be too far from you. He is an advocate for the patient, and very forward thinking in treatment plans. If you would like for me to give you his name and help you get in touch with him, PM me. I'm sure a second opinion would be good and I can't think of a better onc."
<!-- / message --><!-- sig -->__________________
Sassy
Lily, Sassys Doc seems like he might be a "winner"...any chance you could see him?

Hugs,Marcia

[Julie2]

Lily,

Please see another onc. The current one is not doing the right thing for you.

Julie

[Sheila]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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.