Help, cancer has spread from bones to my lungs

[KristinSchwick]

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.

[Ceesun]

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

[BonnieR]

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

[KristinSchwick]

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.

[SusanN]

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!

[lkc Gumby]

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.

[KristinSchwick]

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

[Cat]

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

[CarolineC]

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

[Adriana Mangus]

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

[michka]

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

[Bunty]

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

[Pamelamary]

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

[yanyan]

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 !!!

[mamacze]

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)

[DianaMK]

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.

[Vicky]

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!

[Kkmom]

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

[Joan M]

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.

[donocco]

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