Help, cancer has spread from bones to my lungs
 

I am in desperate need of some help. Here's the low-down. Doctor says that within 6 months the cancer will start making me sick- shortness of breath (I think is what he meant)- BUT that is if my newest therapy does not buy us more time. He didn't say but I assumed I'd slowly progress to death- but he didn't give a time frame.

The newest therapy, which I started ASAP was high dose estradiol (6mg). For me its a big gamble because in his words we've never been able to find a drug that gave us any traction and in his experience if you fail therapy A, B, C, D, you are more likely to fail therapy E. BUT he still thought it was worth trying the estradiol. So for your ladies and men out there...... here are my questions

1) How quickly do lung mets kill you. From shortness of breath to death. Do you have any examples of women/men that ticked along for years?

2) Does anyone have first or second hand knowledge of a person at stage IV who failed therapies A, B, C, D but E worked for a long time.

3) Any experience with estradiol? Time to progression mostly is what I'm looking for, and did switching back to anti-E work thereafter? I know the studies say it works but I want to hear from the patients themselves.

Thanks so much, you all are so supportive, I don't know what I'd do without this group. Sorry my writing is all over the place, percoset makes me really goofy.

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

Kristen, Easy does it...try not to press the panic button...easy for me to say I know. I have had lung mets (one, now two) since May 2006. I have had various treatments with good success. I have never had shortness of breath from the lung situation...only from the treatment! I cannot comment on the treatment you are having, but I wish you the BEST! Cathy

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

I have no personal experience to share. But I'm certain other members will be here to help answer your questions. Thank God for this board
I just wanted to say that I love you and I hope so much that this proposed new drug is successful
I also always say, although it's hard to do sometimes, "keep the faith" That's what keeps us going

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

Thanks ladies, I feel very strongly that you fill the niche that would be my mother's opinions and concerns, if she were still alive to tell me herself.

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

Dearest Kristin...I haven't been on for quite some time...saw your post...just wanted to tell you I'll be sending prayers your way!! Huge Hugs!

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

Hi Kristen,
TDM-1 with another round of Herceptin seems to work well with heavily pretreated ladies.
I found this article:
www.medscape.com/viewarticle/811845

God bless and hold on. There are alot of good combos out there.

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

I've already been on Kadcyla (TDM1), it didn't last long.
Please more of my met sisters chime in.

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

Kristin, I don't have input on new drug but just wanted to send hugs and prayers for success with it. I too have some lung things never biopsied but shortness of breath came from kadcyla and possibly halaven.
I hope someone here can give you better input.
Cathy

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

Kristin,
Do NOT lose faith. I was just thinking about you the night before last and read your blog of your trip to DisneyWorld. Let’s take a deep breath and a step back and look at what has been going on in your life.
You had strep throat and bronchitis twice in a short period. Parker had the flu, maybe you had that as well. You’ve had Kadcyla which can cause lung inflammation and Docetaxel which I have read on another site can also cause lung inflammation.

I have one stable bone met in my sternum, but last fall the big woop-de-do was that I also had it in my adrenal going into my kidney and let’s throw in lung spots. Fast forward to now. My adrenal gland has stopped growing (stopped drinking oral contrast-Gastrografin-which I suspected was antagonizing my adrenal), my kidney progression is stable (had Pamidronate last year which I read could cause kidney problems) and my lung thingies are stable. Now the thought is that they are fungus, sarcoidosis, inflammation. I have not changed treatment from Letrozole and Herceptin. I have stayed the course.

Many things happen in our lives that I think are being caught on scans and aren’t cancer. I, like you, have been having foot pain. Last fall my Herceptin was delayed and after I had a reloading dose I felt great, but eventually felt under the weather abit. In Feb I had a lot happen-I noticed two dots by my mastectomy scar and some inflammation and I could feel tiny bumps under my skin in my back. Then my Herceptin was delayed again and before the reloading dose I felt like a vice was wrapping from my back to my front ribs and my back felt like it had been beaten with a steel rod. I couldn’t sleep laying down, just sitting up on the couch with a pillow on my lap and leaning forward. I felt pain like labor pains in my left shoulder and under my left arm and the pain was so intense in my back I was crying sometimes. 1-4 a. m. was the worst for me.

In mid-April the day after my Herceptin my stomach broke out in dots and a week later I had vertigo and dizziness. I was constantly attached to the heating pad and couldn't move after 4 p.m. and felt like I was taking Motrin like M & Ms, but never over the recommended dose. Only a few weeks ago I was finally able to stop playing musical beds , couches and chairs to see where I could sleep. An occupational therapist got me a ROHO mattress and that was even uncomfortable.

I went to a pain management doctor a few weeks ago to try to alleviate the pain. I had just started being able to sleep laying on my side. I had planned on just getting information about the procedure, but I was going to a conference in Vancouver and thought it might be nice to not have so much pain. He punctured my lung while injecting needles into scar tissue on my mast line. (which is where he thought the pain was originating from). I’ve had two ports placed and a biopsy of my sternum and no one ever punctured my lung. So here I am with my son graduating next week and I’m still recuperating. But I am recuperating. I have stomach pain now because they think my diaphragm was involved in the lung incident or maybe the virus attacked my stomach. My scans are stable and my TMs which had risen to their highest, have slightly declined.

My point is, I think I had shingles. I think maybe you could have had it as well. I don’t know. I do know that you’ve been sick with non-cancer things and that is what they are seeing on your scans. Your body is in pain and has alot of inflammation. You need to heal. What makes the doctors think the lung issue is cancer?

Take care,

Caroline

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

Dear Kristin, All I have to say is this, read my signature. Do not panic, also, why does this doctor think that you are going to have a hard time breathing? Are you having a hard time breathing now? I would take his words with a grain of salt, for no one knows for sure how well you can do on a new therapy. Can you switch doctors?

God Bless You. Take care,

Adriana

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

Dear Kristin, did you have Navelbine? If not, you could add it to your combo. Don't loose hope. Look at Mamacaze's last post. Navelbine worked for her and some others. And find another Dr for another opinion. Hugs. Michka

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

Dear Kristin, I understand that you are overwhelmed at the moment, but there has been some great advice given here. I would also seek a second opinion as well. As Adriana asks, why does the doctor think you'll have shortness of breath in 6 months? (I know we are all different, but I've never experienced shortness of breath, and I've now had lung met/s for over six years).

Sending you love and keeping you in my prayers...

Marie x

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

Dear Kristin,
My own experience is not directly relevant, but reading some of the other posts seems to make it clear that lung mets are no more predictable than other kinds. Your doctor seems to be promoting panic, and I agree with the others about a second opinion. Good luck with the Estradiol and remember there are other things to try as well.
Warm wishes....Pam

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

Hi Kristen I don't have lung mets but I'm also heavily treated. Now I'm on navelbine perjeta and herceptin. From what I heard navelbine is well tolerated and pp can be on it for a prolonged period. My last chemo was abraxane gemzar and herceptin but didn't do much to the skin mets. I went for a second opinion the Onco at UCLA said for her2 positive pp, they want to do as little toxic chemo as possible . If your lung mets are minimal maybe wedge section or ablation would work? I vote for navelbine. Hugs to you !!!

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

Hi Kristen - I love the strength in your panic - you are a women of action - you are strong, and you are going to mother and love that beautiful boy of yours for as long as you possibly can.
I would like to chime in support for a second opinion. Doctors are used to it and when your life is at stake then you go and get one. I don’t like the way your doc anticipates decline instead of giving you hope. Hope is not outside your realm of possibilities!
To answer your question:
"How quickly do lung mets kill you. From shortness of breath to death. Do you have any examples of women/men that ticked along for years?”
When I was diagnosed with stage 4, I was very short of breath. I was a fairly young and energetic 48 year old with 4 kids at home and struggled to go up the stairs. Navelbine and Herceptin worked for me.
I am sure there are others - and I am sure they will chime in.
The other thing that worked for me was entering a clinical trial with the tumor vaccine group in Seattle. You may want to consider a clinical trial.
My second opinion oncologist at Sloan Kettering is excited about the results she is seeing with Perjeta and Herceptin. Maybe that will be your magic bullet.
Finally, you may want to consider getting a genetic profile done of your tumor. Becky posted a sticky about this - if you want more info after reading that, I am happy to share via PM. I had a profile done and it was useful.
Stay clear headed and focused. You can do this. Your mom, I am sure, is with you right now giving you strength.
Love and Hugs times 10,
Kim (from CT)

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

As others have said, I would get a second opinion. I have lung mets and was able to get a wedge resection done. That was 4 years ago and they still continue to watch the one on the other side which has remained stable. I have never been short of breath. I pray they will find the right combination for you.

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

Hi Kristin,

I had 9 months of TDM1 after diagnosis just over 3 years ago, and then progressed with lung mets. I have never gotten rid of them, but managed to either shrink them or they have remained stable. I have not had any shortness of breath and feel well. I am on Arimidex currently and Herceptin, and after two months on that treatment my tumor markers just dropped. My doctor remains positive and hasn't made me feel any different about those mets.

Hang in there friend!

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

Kristin,
Just from reading the responses from the ladies which have lung mets or others, the overall seems to be "get a second opinion". Check out the MD Anderson or the Mayo Clinic - the research and new treatments are yours for the asking. When I was first diagnosed with breast cancer, my husband was the one which encouraged me to get a second opinion - it was the best thing I ever did.
You are in my prayers - Keep going - Calm your heart - we are all behind you. Pam

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

After having stage 2 in 2003, the breast cancer metastasized to my lung in Jan. 2007.

I started Herceptin and had a wedge resection in April 2007. Even though the margins were clear, the cancer returned to the same area a year later in April 2008. In August 2008, the nodule was ablated with radio frequency ablation (RFA). I was never out of breath. I haven't had anything in the lung since then.

I've been on only Herceptin since the cancer metastasized in 2007.

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

I read in an article that Taxol plus an
old drug called Mitomycin has been useful in some
heavily pretreated patients. The taxol is given every three weeks ands the Mitomycin every six weeks. This was in Pub Med

Paul

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).