Stage 4 with mets to bones and liver

Hello Everyone,
My 40 year old cousins stage four breast cancer with mets to bones has now shown up in her liver in her PET scan today. The doctor had given her two years at best and had asked if she wanted hospice to come in. I do NOT feel that it is time to give up yet and was wondering if anyone knows anything about treatment for this or is their a place that specializes in this. Please give me your input. She has four children at home under the age of 12. Thank you!

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I am so sorry that you and your cousin are going through this. I can read the anxiety in your post and I ache for you. There are many people on this site that can give you hope. I suggest that you search for and read past posts on survivorship and liver mets - they can tell you more about available treatment. I am a 43 year old, 4-time, 8-year survivor of breast cancer. I have two children under the age of 13. I was diagnosed with liver mets in October 2009 and am now stable (it's not gone - but it hasn't grown) after navalbine followed by gemzar/carboplatin. This is not easy. You are doing a good thing by trying to learn as much as you can. Keep hope alive in your heart.

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I was also told two years at best and hospice was contacted, without my knowledge, but it was obviously felt to be appropriate.
That was fifteen months ago and in that time met first shrunk and since then has remained stable. I feel very well and, all remaining well, do not have to see my onc. until February next. I am certainly expecting to still be here next August.
It is hugely scary to be told that the liver is involved and having young children must make it unimaginably harder but it is absolutely not an immediate death sentence.
As forman4 says learn all you can and definitly keep the hope alive.
love and prayers
Angelax

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Whit1234,

Honestly, I could write a book (and I think I just did) about doctors with a serious God syndrome who write patients off without a single thought about the "slap" they issue when telling people how long they have to live. Tell your cousin to find another doctor! Run! Run! Run! If her doc isn't a fighter, she doesn't need him/her. I, too, have been the victim of careless doctors and shotgun predictions. And in one case I think the idiot was trying to make his prediction come true. Long story, short: Diagnosed with Stage IIb triple negative BC 10/02, mastectomy 12/02, A/C 4 rounds 1-4/03, sent on my way with not so much as a PET scan, x-ray, CT, nothing! That was MY first mistake. I trusted the doc. He saw me every 4 months for a little over 4 years--he didn't even take tumor markers the dope. In 10/06 I complained of neck pain, he said arthritis. I continued to complain that it was worsening, but he basically told me to "man up" I was old and arthritis was a given. By 4/07, I was losing use of my hands and in so much pain I no longer slept but my idiot doc's attitude kept me from his office. I wanted a CT, he said "no." I wanted at least an x-ray, he said "no." Finally, I went to my primary and thankfully was treated by his nurse practitioner, who is 10 times the doc the doc is. He ordered a CT, an x-ray of my neck, and I asked for a chest x-ray for good measure (just because I had not had one since a teenager). Of course, the news was BAD, BAD, BAD (words of primary when he called me with results). Spots on lungs and liver, need biopsy and he ordered an MRI on my neck even though he saw nothing, I insisted, and a liver biopsy. More bad news: tumor in neck inoperable at T1-T2. Back to dumb oncologist. Asked for new onc, HE said "no," and his group backed him (HMOs are a real pip). He finally orders a PET (my first ever and it was a FIGHT TO GET THAT), bone scan (my first ever), and brain scan (first ever). More bad news: Mets to liver, lungs, lymph nodes, bones in neck. He predicts right then that I've 2 years left and asks if I want chemo or hospice. This is the day I finally realized I was in charge and if I didn't take charge, the medical profession would write me off, dig my grave, and kick me in it. After all, I'm "old" (60) and need to man up and face the funeral dirge. Shaken, I choose chemo even though this man has programmed me for death. Ten rounds of radiation fixes the neck tumor (so far still dead), 4 rounds of Taxol/Avastin and a PET that says NED w/tumor markers (for once measured) @ normal. I ask for maintenance. He says "no such thing," WHICH IS NOT TRUE! Sends me down the road telling me I will return with a recurrence in 7 months, have treatment after treatment, fail, fail, fail and finally be dead in 2 years (I don't know if it is the same two years from before or a new 2 years). Still trying to dump oncologist #1 w/no results, I finally change from HMO to PPO. Lo and behold, I'm back at it in 7 months (he was correct about that one). By 11/07 I and new doc, as a result of PET indicating more liver mets, start Gemzar and a trial drug sorafinib but the sorafinib turned out to be a placebo. In 12 weeks I progress 20%. Off to Abraxane and Avastin, my new doc (who also predicted 2 years -- again, I don't know what that starting date is) gets fired by his hospital (like overnight), and I become by accident the patient of a really good oncologist, whom I'd tried to sign up with years ago, but she wasn't taking patients. She puts me through a bunch of tests, we discuss chemoembolization of my liver tumor, it gets approved, I have to go off Avastin but stay on Abraxane and go through 2 chemoembos + 1 radiofrequency ablation. PET says new liver mets and new lung mets - total failure- radiaton oncologist predicts certain death in 03/08. A string of protocols follow since 3/08. I've taken and failed through so many agents it is pathetic, but I am still standing, albeit, wobbly at times. Along comes a PARP trial (ABT888 single agent Phase I). For 12 weeks I am under the care of a university doc who, as long as my liver enzymes are stable or lowering seems pleased (tumor markers slowing rising but she's nonplussed). She's nice to me because her trial is going well. Finally, the 12 week PET and bingo, 20% progression and she, no longer fond of me, literally kicks me to the curb with the words "this is the talk, you've but 5 months left, forget about more chemo, ALL WILL FAIL, go to Europe, live life because we've done all we can." Needless to say, I'm pretty much beaten by now (guess that 2 year prediction began with first doc). I return to my regular oncologist and she says, "I never give predictions because people always prove me wrong. I can't say if she's right or wrong, but you look fine, you've tolerated this stuff pretty well, your liver isn't happy but your bilirubin is fine and you aren't in pain. I know we are running out of agents but let's just keep trying and together we'll decide when you are getting 'the talk'." So, that was 2 months ago (I've been fighting this recurrence now over 3 years and cancer a total of 7). I went back to Avastin and Abraxane and we are going to wait 90 days for my first PET. I got a raging headache and asked for a brain MRI, which revealed a 2 cm brain lesion in my right frontal lobe that by the end of this month will be gamma knifed (God knows what that'll bring). I asked, "is this it"? She said, "we found this by accident, it's an inch, I know, but by accident and it's one, not many. Your type of triple negative responds to radiation, and gamma knife is radiation and noninvasive. Why quit now? We still have a few agents as we go, others are coming down the pike, your liver enzymes are slightly down and even though the tumor is 25% of your liver, you can live with 75% involvement, and if the bilirubin becomes a problem, we can put in a stent. As long as you want to fight, so do I."

I don't know if the 5 month deadline is looming ( sure hope not but brain met is scary and they grow very, very fast), but with her by my side and people on this site ready to urge me and others on, why give up. Tell your cousin to not give up. Dump the doc. That 2 year thing is something out of a statistics book the dumb docs read 10 years ago and they never change their stance. Why should they? The "standard of care" is so minimal, it usually does kill a person in 2 years while they are in Zurich skiing! If your cousin looks on this site, she will see many who have been fighting longer than I. YOUR COUSIN WILL KNOW WHEN TO CALL IT QUITS, not the doc, or they will make that decision together. I have had a very long and painful learning curve. I pass this on in hopes it will shorten the learning curve of others.

Welcome to the club (darn it), learn from the experiences of others, and my money's on your cousin being around to see her daughter graduate from college. Oh, and as for clinical trials, take it from me, anything that isn't Phase III is not worth it. I did the first because taking one for the team seemed the right thing to do. I did the second because of all the PARP hype but realized later that PARPs are not meant to work alone. That is, the purpose of a PARP is to confuse the cancer's DNA so the chemo agent can go in for the kill. Those BS201+agent PARP trials are successful for that reason and word on the street BS201 is going open label in January. YAY, another weapon in the arsenal that for me grows ever smaller. Remember, every day we stay alive might be the day an agent comes out that will work.

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I was diagnosed 18 months ago with mets to liver and brain, at age 38 with 4 young children. My cancer is HER2 positive. I was treated with tykerb and taxitere for 6 months, then went to Xeloda and tykerb. My cancer has totally disappeared from the scans, and no additional brain mets. I've been very lucky with my response, but goes to show that there is hope.

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I was dx Feb 2010 BC W/ bone and liver mets. My ono put me on Femarra and Zometa. After Pet scan 9 months later I am NED. MY ono says there are alot of drugs out there and she can keep me alive for years and years...think positive...THE CURE WILL BE HERE BY THEN. Get a second/third/fourth Ono until you find the one willing to fight for her...and that will make her fight and not give up.

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I was diagnosed initially as Stage IV with a large primary in the breast (mastectomy) and multiple large mets in the liver and throughout the chest nodes in Aug. 08. Went on Abraxane/Avastin Oct. 08 and everything was clear in 3 months time except one stubborn liver met. Switched to Xeloda/Avastin and was declared in complete remission by June 09. Stayed that way until Sept. 10. Had a clear CT and 2 weeks later tumor markers were rising. Had a PET and had a couple tiny areas (not measurable) light up in the liver and on the spine. Back on chemo, this time taxotere/carboplatin/and Zometa. Onc originally told me the 2 year statistic but that he puts more stock in his patients than numbers. I had no expiration date. All oncs tell you to put your affairs in order (there are no guarantees) which I did. Over the 2 year mark and planning on many more! Hugs and blessings to you!

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Ditch the doctor. There are lots of chemo options. I never heard of a doctor say two years to live with liver mets. My primary diagnosos was bone mets in 2/05. Was able to do hormone therapy for 4 years. Then found liver mets in 1/09 and have been onchemo since. First taxol/avaston now just taxol. I dont work, but have a great life. A lot depends on where in the liver, how many tumors and is her disease slow or fast spreading, but tumors can shrink with chmo. MINE DID!! I am not NED, but my tumors got smaller. I do not have symptoms from liver tumors.
Tell your cousin to have hope, believe she can fight this and be confident. She will know when the right time is for hospice and is sounds like it is way too soon for her to think that.

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I know Dr.s think they are doing the patient a favor, but they could at least soften it with, "some people only live a few years after this kind of thing, but others have a longer life, we just don't know at this point but we'll do all that's possible to help you." I would love to give a seminar on what to say and what not to say to stage IV cancer patients. For Dr.s and lay people as well!
I started at an HMO and never got tumor markers then or a baseline CT, but I did try and be as aggressive as I could. I now have a different insurance and live in a different state and have a oncologist at a University hospital. They are much more helpful, but you have to keep them on their toes so you don't get lost in the system.
Anyway, I've outlived their predictions and have had a good time as well.

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I have been in remission from liver mets for about 50 weeks---today my PET results come back with more spots on my liver and one spot on my hip bone. My doctor's response? To get a bone scan and MRI of the liver and if it's cancer then we'd do more chemo. He followed that by saying since my cancer has responded to chemo in the past he is confident he can get me in complete remission again.

If he'd told me I only had two years to live at this point in my disease I'd be getting a second opinion instead of an MRI next week. Ditch your doctor and find someone who is willing to help you fight.

I'm gearing up for round 3 against BC and I promise you---I will win--again and again and again! You can to!

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Dear 6250:

Thank you for your "book". Please continue to write. I need to hear your story! Your original doc sounds so much like mine - I'm here in Eastern Canada.

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9 months ago my 41 y.o. wife found that her cancer had spread to her liver, bones, lymph nodes and other places. After 6 months of Abraxane and Avastin, and now 3 months on Avastin and Arimidex, we are ready to declare her "cured" because she is back to her old self...her scans look very good...no more mets on her liver....her hair is coming back, her energy is back and her life is back on track....good thing we didnt call hospice!

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I was dx with bc mets to liver (large tumors) in Jan. 2005 at age 34. It is now almost 6 years later and I have been NED for 3.5 years now. I just celebrated my 40th birthday and they didn't expect me to see 37.

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Ditch the doctor fast. I was diagnosed Stage IV with mets to liver and bones last September. Onc thought I would be on constant chemo with just short breaks. I am HER2+. I had radiation, 6 mos of chemo, and a kyphoplasty when they found a fx at T12. Finished chemo in March and am now just on Herceptin and Palmidronate.
I do a regular Pilates class every week, work as much as I can and just saw the doctor yesterday who cleared me for two more months.
It's a horrible shock to hear this news, but things are not that glum. I am going strong and it has been more than a year.
I have met several women who have needed to be on chemo constantly with just short breaks, but they have been doing it for 4-5 years!!
Run, while you still can, to another doctor.

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My doctor has always told me that only God knows how many heartbeats we have left.

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Hi Charlee2,

I just had a Kypohoplasty at L5 a little over a week ago. How long has it been since yours? To me...This was such a neat concept and the pain is soooo much better!

Hi Whit1234, I have been living with mets for almost 5 years in Feb. Original DX in bones (innumerable) with 2 small spots in liver. Those spots went away. Now I have several small spots again but they are stable as of last scan. I am on Ixempra-Tykerb & Arimidex. I also had my ovaries removed in October. They did a liver biopsy and sent it off to target now to find out what meds I would likely respond to since I have gone down the chemo line also. I try to stay in the know of drugs coming in and I learn as much as I can to have as ammo!!! I have NEVER been given a time. I saked about that originally and they looked at me like I was crazy and told me of a patient of theirs that had bone mets only and had been dealing with them for 10 years. I haven't heard anything recently about her, but by now it would be 15 years. I think I am going to ask about that. :) Get rid of your current doctor and maybe even look for a female doctor. All of my female doctors are wonderful!!!

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Find another Dr. that is barbaric for him to say that!!!!! I am 13 years out and 11 years out with bone mets and 6 years our with liver mets. GET A SECOND OPINION at a larger cancer institute and put a hit out on her doctor.

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are you guys all HER2+ ? or in many cases we are out there
that are Triple Negative...which there are not as many treatment options nor are they as successful. Good to know if you are Triple Negative or not. That gives us hope too. thanks, Katie

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Try seeing if she is a candidate for liver ablation. If not, there is a more invasive procedure called liver embolization.

Best of wishes and you, as all on team inspire, are in my prayers.

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FIND ANOTHER ONCOLOGIST NOW! There are drugs to try...Abraxane, Zometa, Avastin (if it is not done away with) and Xeloda. Bone mets have been stable for about two years and the mess has come back in my liver three times. Right now there is only one spot which is stable. Please keep up posted on your cousin. Where is she located?

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