Re: Help, cancer has spread from bones to my lungs
 

Kristin,

I just read you blog. I wish I could give you a huge hug. Do not let the news of one person get you down. The stuff on the Pet scan could be anything but cancer.

Please, please, please seek another opinion! I'm sending positive thoughts to you. Did I mention my daughter's name is Kristen? (I know, with an e, but still)

You are a smart woman-I hope someone comes to your aid with positive news soon.

Re: Help, cancer has spread from bones to my lungs
 

Kristin,

I am praying for you, Caroline and the other ladies here have mentioned a second opinion ... another oncologist could have another strategy to try, please consider seeing someone else.

There's still a lot of positive things that can happen and change for the better in 6 months!!

Carol Ann

Re: Help, cancer has spread from bones to my lungs
 

Ladies and Paul
The reason I haven't gotten a second opinion is that my father is an family doc, and I've been getting his opinion all along this 4 year journey. Before my mother passed away (another family doc) - she would be all over clinical trials.gov, keeping an eye out for a trial just for me. I'm also very close with a few faculty at the UI where I got my PhD and they all think that my oncologist is the best out there, he specializes in breast cancer and has successfully treated my friend with stage III breast cancer while pregnant, both baby and mother are still fine.

The main reason I haven't gotten a second opinion is that a friend I made from Immerman Angels got a second opinion from cancer center treatments of America and wa very underwelmed. First the process was horrible- they want everything from your first biopsy sample (yes the first biopsy slide) to your PET scans burned onto discs. Then at the end of it all you have to make sure you get it all back. So I am scared that something could get lost. Secondly, they told my friend that they'd do the exact same thing that her doctor was doing already.
I have a long history and he monthly presents my "profile" to the tumor board, a group of oncologists, surgeons, radiation oncologists who give their expert opinion on everything treatment related. So I feel like I am pretty well covered at the moment, but I will look into it again and see if there are any clinical trials at the UW in Madison or Twin Cities to see if a clinical trial would be beneficial.

Re: Help, cancer has spread from bones to my lungs
 

It's always very tough dealing with progression news. I'm so sorry it's such a hard time now.

But I do think there are still treatment options out there as I noticed you've still got a few chemo options, in addition to the anti-hormonals. You could also consider SBRT/RFA if there are a few small lung tumours.

There is this lady on another forum who finally met NED some years after changing several chemo options. I guess we just have to continue to push on to find that one sustainable treatment.

As the others have suggested, a second opinion would not hurt and might open up more options.

Just want to add, I'm ER- and am on my 7th year with liver met after quite a few chemo treatments thus far. Hang in there.

Re: Help, cancer has spread from bones to my lungs
 

Kristin,

Cancer Treatment of America is a 'chain store' - there's no comparison to the Mayo Clinic or MD Anderson. Even though it's still possible that they will recommend the same regiment as you've already been heavily treated, it's worth a try to contact the best cancer centers of the world. Remember it's a long process for a treatment to go on clinical trial. Anything that's been published is 'yesterday's news'. You want to get hold of the top-notch researchers to find the state-of-the art treatment.

How about our trusted Dr. Dennis Slamon at UCLA? The Father of Herceptin? AndiBB had gotten hold of him almost 10 years before Herceptin was formerly approved. He might have a better idea/picture as everyone in the field likely will consult him before conducting a new research on treating Her2.

With the birth of your son and your mother's passing, your whole family have been through tremendous stress the past few years since your diagnosis. Hang in there and good luck. I'm sending you good vibes.

Re: Help, cancer has spread from bones to my lungs
 

Dear Kristin,

If I had not actually gotten a biopsy that confirmed lung mets I would not believe I have them. I do have some shortness of breath, but I think it's from the Kadcyla. At the time I started on Herceptin & Perjeta with no chemo, I had been receiving something that can cause lung inflammation for all but 8 months since I began treatment. I also had back-to-back upper respiratory infections from Thanksgiving through late January, so I was coughing all the time.

Back to your question, there's a woman in my in-person support group whose lung mets had gotten so severe she was on oxygen a little over a year ago. Now she's doing much better--off oxygen, back to work. They did Taxol for awhile, which helped her. She's on another old school chemo now.

I definitely don't think you have to assume this is the beginning of the end. I, too, love the strength in your panic. Just take it one day at a time, dear Kristin. And keep in touch.

Re: Help, cancer has spread from bones to my lungs
 

I'm wondering how your team feels about oligometastatic disease, or treating some metastatic lesions with a local procedure, such as surgery, radiation, and interventional radiology. I advocate for local procedures in combination with systemic therapy, where appropriate. Perhaps you could bring it up to them.

Far too many oncologists argue that since metastatic disease is systemic, a local procedure won't help in keeping the cancer away. And this appears to be particularly the case at larger institutions and when a doctor is famous. They also say that there's no evidenced based medicine to show that local procedures help. Only anecdotal evidence. Or, for heavily pretreated patients, they might finally say, Let's cut it out, radiate it, or ablate it. In sort of a last ditch effort. However, all of that may change based on the results of clinical trials, and some medical oncologists are speaking more about local procedures at metastatic conferences.

Clinical trial of stereotatic body radio surgery for advanced bc survivors:

http://www.clinicaltrials.gov/ct2/sh...=chmura&rank=1

This is an area of oncology that makes me feel TREMENDOUSLY SAD: that perhaps local procedures/systemic therapy can help some patients, but doctors refuse to consider them. Only some of us are lucky enough to have sustained NED through only chemotherapy and targeted treatments, such that we can then drop the chemo. And I wasn't one of them, but I've never taken chemo since my bc advanced to stage 4. So, I really don't know what would have happened.

Also, WE are particularly lucky, because there are THREE targeted treatments for us, and more if we're hormone positive. I CRY for women who have mTNBC. They have no targeted therapies and can rely on only chemotherapy. Some of my good friends have metastatic triple negative disease. I PRAY everyday for the discovery of an effective, targeted treatment for them.

I now know several women who have had lung mets removed and are doing very well. A survivor on this website did the same for skin mets. She was being treated with Herceptin, Tykerb, and Xeloda at Sloan-Kettering, and they refused to consider surgery to remove them. The mets were on her breast where she had a lumpectomy. Every time she stopped taking Xeloda, they recurred. After three times, she switched to my oncologist who agreed to remove them surgically, followed by radiation to the area. In March, she passed her one year NED mark, and she stopped taking Xeloda about three months after the surgery.

Local treatments aren't for everybody, but they could perhaps help some patients.

To quote our angel Brenda, who said many times on this website: I'D RATHER BE ANECDOTALLY ALIVE THAN STATISTICALLY DEAD. Her fiancé even mentioned this quote at her funeral service of which a video was posted online. Brenda, I couldn't agree more.

After all, we're fighting for our lives.

Re: Help, cancer has spread from bones to my lungs
 

Kristin, I hate this ucking cancer. As you already know, cancer can be so unpredictable. A doctor told me I had 7 months to live---that was 18 months ago. It's a horribly scary feeling like your days are numbered, but no mater how much time we have left, we shouldn't make ourselves suffer with worry until that time. I know it's so hard to stay positive and there are many times I don't succeed. No matter how good doctors are, they can't predict the future. So please don't focus on that part. Live for today, keep your strength and faith. You obviously - are in good hands with this doctor and you fully trust this doctor's care. So give this treatment a try and continue taking it a day at a time. I know it's easier said then done, but you are a very, very strong woman. Wishing you improvement and wellness with this treatment. I'm praying for you too. Super huge hugs,
Joanne

Re: Help, cancer has spread from bones to my lungs
 

Joanne,

I remember going back and forth with you with many PMs about two years ago, and thinking at the time, what a nerve your doctor had about the 7 months!! Well, it goes to show us how wrong they can be and how we never know.

Joan
xo

Re: Help, cancer has spread from bones to my lungs
 

Kristen I have two online friends on a cancer support forum and both have just celebrated five years out and in remission so don't give up just yet as it is possible to still beat this!

Re: Help, cancer has spread from bones to my lungs
 

Thank you so much ladies (and gentlemen), for taking the time to respond to my panic. I'm feeling alot better all your stories have given me much hope (or disbelief in statistics is more like it).