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Topic: Help!!!!!!! I need guidance

Forum: Stage IV/Metastatic Breast Cancer ONLY —

Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.

Metastatic breast cancer (MBC; also called stage IV) is breast cancer that has spread to other parts of the body, most commonly the bones, liver, brain, or lungs. Metastatic breast cancer can be treated but not cured. Metastatic disease is NOT hopeless. There are a wide variety of treatment options for metastatic breast cancer, and new medicines are being tested every day. More and more people are living life to the fullest while being treated for metastatic breast cancer.

Note: Please contact your doctor for any specific concerns about symptoms you are experiencing or your course of treatment.

Learn more about living with MBC.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

Posted on: Jun 25, 2007 08:44AM

RoxanneNJ31 wrote:

I went for a second opinion and he is totally different from what my doctor wants.

original dx i am 33 er+/PR- her2 - grade 3 left breast and 2 nodes.

New dx. bone mets to 4 bones with pain.

My original onc wants to change hormone therapy, and do radiation for pain.

The new onc wants to be more aggressive and do xeloda, advastin, foselex, and zometa because hes afraid that its going to explode throughout by body since my last rad was only last aug.

1. does anyone know if the second is the right course of treatment for bone mets.

2. I hear people taking xeloda get really sick. he also suggested abraxene instead.

I really don't want to be throwing up since i have to work because im the sole supporter in my house.

I really need some direction here and the only place i know i will get some is here with my sisters.

Thank you for taking the time to help me.

I am so confused and really am not ready for all this again. I just don't have the energy for being sick. I was always positive but im having a really hard time with going through all this again.

God bless each and everyone of us!!!

Live for today, tomorrow and for as long as were blessed on this earth...
Dx 6/5/2007, 4cm, Stage IV, Grade 3, 2/30 nodes, mets, ER+/PR-, HER2-
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Jun 25, 2007 09:17AM KariLynn wrote:

My opinions were opposite yours. I was dx'd with bone mets, 1st dr wanted chemo, second wanted hormones.

I went with hormones and did Arimidex and Zometa with Zolodex to shut down the ovaries until I had my ooph. About 18 months later we switched to chemo because Arimidex and later Aromasin stopped working. But those were 18 easy months!

It's totally your call, I'd probaby try go with the first doctor but if the scans didn't show improvement would change to the chemo. But I'd always wonder if I did the right thing. You have to go with your gut. How high is your ER%? Did they biopsy a met to make sure it's the same chemistry as the original tumor??

Sorry you have to deal with this.
If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying? Dx 6/2/2005, IDC, 2cm, Stage IV, 14/25 nodes, mets, ER+/PR+, HER2-
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Jun 25, 2007 10:24AM badboob67 wrote:

I second karilynn's advice. I was dx'd Feb. 2006 with multi-focal tumors (5+cm) and extensive bone mets. I have been treated with surgery (mast & vertebraplasty for spinal fracture) rads to spine (one round last april, on round this april for 3 new spots on pelvis). I have not had chemo. I do arimidex, zoladex (39 and pre-menopausal) and zometa monthly.

My doctor's philosophy (and I believe it is the generally recommended route) is to use the least rigourous tx first if there is a possible positive outcome with an easier therapy.

I did have small progression (3 small spots on pelvis are not that much considering I had mets on nearly every vertabra, sacrum, pelvis, ribs, skull and femur). I completed RADS a couple of weeks ago and will be rescanned after my family vacation in July. If there is a sign of more progression, we will talk about chemo options then. It is my understanding that XELODA is much easier than other chemos and it has the added bonus of being in pill form.

Good luck...I'll keep you in my prayers that whichever therapy you choose knocks that cancer out! (((hugs)))
When you're down to nothing, GOD is up to something! Dx 2/15/2006, IDC, 5cm, Stage IV, Grade 2, 24/27 nodes, mets, ER+/PR-, HER2-
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Jun 25, 2007 10:51AM JerseyGemini wrote:

Hi Roxanne --

I am in NJ too, just turned 35 and almost the same situation. I was stage 1 and on tamoxifen + lupron for 4 years when I was diagnosed with stage IV in may with one met to my rib. I, however, don't have any pain at this point. I am still 82/92% ER/PR+ These were my opinions:

My main onc. (St. Barnabas in Livingston) - switch to Femara, stay on lupron or have ovaries removed, add Zometa, and no radiation because i'm not in pain

Second opinion: (local onc. in Nutley) - initial reaction was radiation, xeloda, avastin, zometa, and femara. My head was spinning when I left there. He was like throw everything at it...but he said he was going to also confer with other experts at Sloan Kettering and MD Anderson. He called me back the next day to say he was overzealous and all of the "experts" said no chemo, just femara and zometa. He stuck by the radiation recommendation

3rd opinion (SLoan Kettering in NY) - same as my onc. femara and zometa, no radiation or chemo

4th opinion (cancer institute of nj) - same as my onc. femara/zometa/no rads or chemo

So, I should be happy that they all say the same thing but I'm still not comfortable. I'm going to one more doctor at NYU who is more of an "out of the box" thinker. What I can tell you, and my story proves, is that the accepted protocol is to not do chemo, just switch up the hormonals. Radiation definitely if you have pain. I went to 2 NCI certified hospitals and they both said the same thing.

I did decide that if the Femara/Zometa shows shrinkage in my one met by end of summer and nothing else pops up, I'm having the radiation anyway. My onc. is okay with that.

Please please let me know if you need recommendations on other opinions. I would suggest getting a third to make yourself feel better. I would bet they'll agree with the first.
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Jun 25, 2007 10:51AM LuAnnH wrote:

I was dx with bone mets only 7/06. I am triple positive and 44. Since I already had a hysterectomy, my onc recommened Arimidex & Zometa. Zometa helps streghten the bones from the mets damage and then a hormonal to stop my estrogen to see if that worked. I was on that until recently. Now on Faslodex, herceptin & zometa.

Has your onc discussed a biopsy? Your hormone status could have changed from original dx. As Diane said, they like to take the least toxic method to control the disease as long as they can. So far tx has been pretty easy for me.

I am a single parent household also and understand about the income problem. I will be going to LTD through my employer soon and with a little help from my brothers am going to be able to make it ok. We will cut some corners but at least I don't have to worry about not pulling my weight at work anymore. Lots of ladies work full time and go through tx for Stage IV, just a matter of how you handle tx.

As for xeloda, I don't know of many people who have complained of sickness. Their hands and feet are the biggest problem along with fatigue.

Good luck and keep us posted.

LuAnn -- Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
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Jun 25, 2007 01:56PM CalGal wrote:

Hi Roxanne -

I think you're on the right track with a 2nd opinion - have you considered getting a 3rd opinion?

On my recurr and mets dx (liver), I had a 2nd and 3rd opinion and then again, partway thru chemo, I had a 2nd and 3rd opinion again. Can you get a 3rd opinion - which should make you feel more confident on the divergent recommendations you've received ... although it could throw a third option in.

Trip Neg, BRCA1, Mets dx 12/05 despite 2 cm tumor & clear nodes at orig dx 9/04.. Liver, lung & one bone met.
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Jun 25, 2007 08:50PM LinTol wrote:

Roxanne- when I was diagnosed stage 4, with liver mets, I changed doctors. I loved my doctor, but she wanted to jump right in and start chemo. I went for a second opinion at a larger hospital, and was told that there were other options to try first. They said at stage 4 they really wanted to aim for quality of life and try easier options. I had 2 surgeries (1 not so easy)and was on Femara for about 9 months, but I had about a year not on chemo.
Now that I am on chemo, I realize what a gift that time had been. I was able to continue on with my life as normal, pretty much. Turned out the Femara was not working for me. Now I am on Abraxane and Avastin. The only big side effect, other than hair loss, is tiredness. I take naps when I can, which helps wonders.

A 3rd opinion may make your decision easier. Good luck with your decision and I am sorry you have to go through this!

JerseyGemini- Good for you getting 4 opinions! I feel strongly about getting a 2nd opinion- but I never had the strength or energy for 3 or 4. I think it is great! Hope you are doing well.
Linda Dx 5/2006, IDC, Stage IV, ER+/PR-, HER2-
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Jun 26, 2007 08:27AM JerseyGemini wrote:

Thanks Linda -- I got 3 opinions at first diagnosis too. With the mets dx I was in such a panic I think I reached out to every big research hospital in the Northeast. I actually had another appointment at U of Penn but didn't have enough slides and films to go around! If I were to do it again, I would have done one big place (not Sloan..I wasn't impressed) and one non-NCI biggest lesson learned is that the NCI places all basically say the same thing..protocol protocol protocol....I couldn't pry a more aggressive alternative out of them. I guess oncologists aren't known for their creativity :-)

I'm going to a naturopath oncologist in the next few weeks in NYC so I'm excited for that...I am all for convention but think some of the natural supplements could make a difference.

Hope you are well too!
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Jun 29, 2007 08:53AM RoxanneNJ31 wrote:

Ive decided to go with the new doctor who has many resources since he is at a university hospital. I decided on Abraxene, Avastin (which I am not tolerating so well ok so first one), Zometa and an anti hormone shot for six months. Then will do scans to see if the chemo worked. After that maintence drugs and hopefully nothing else. Its so tiring you beat one battle and then off to a new battle. Sometimes Im so tired of fighting especially when everyone around you has an opinion thats supposed to be better then your own. Its easy to sit on the sidelines when your not doing all the treatments so I wish they would stop and think for a second because these decisions and treatments are not like a broken fingernail and people need to reconize how strong of people we really are.

Thank you for taking the time to listen and respond.

Dx 6/5/2007, 4cm, Stage IV, Grade 3, 2/30 nodes, mets, ER+/PR-, HER2-
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Jun 29, 2007 09:38AM JerseyGemini wrote:

Hi Roxanne -- Just curious where your new doc is? Of four opinions, I couldn't get anyone to recommend chemo. So I'm doing hormonals but trying to gather a couple of onc. names that are more on the agressive side.
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Jun 29, 2007 11:36AM RoxanneNJ31 wrote:

My doctor is in Hackensack Hospital He is the chief Breast oncologist there. His name is Stanley Waintraub. You can look him up on the hackensack hospital website. Their cancer center is supposed to be in the top ten in the nation....

i always opted for the smaller more personalized care but when the cancer spread i thought it was time to be a number instead of a name and go with a more experienced hospital that are privy and able to get the trials and new drugs.

Good luck to you and if you ever need to PM me please feel free to do so!!!

Dx 6/5/2007, 4cm, Stage IV, Grade 3, 2/30 nodes, mets, ER+/PR-, HER2-
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Jun 29, 2007 11:53AM JerseyGemini wrote:

Thanks! I go to St. Barnabas in Livingston...that and Hackensack are the two largest cancer centers in northern nj so i'm also opting for large instead of small.

Thanks for the name...I'm right in Nutley which is close to Hackensack if you ever want to meet up...

Good luck!

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Jun 29, 2007 12:24PM RoxanneNJ31 wrote:

Absolutely!!!! Let me know and im there.

Dx 6/5/2007, 4cm, Stage IV, Grade 3, 2/30 nodes, mets, ER+/PR-, HER2-

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