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Old 06-02-2014, 09:06 AM   #1
KristinSchwick
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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.
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[B]Kristin
Aug 2010: diagnosed stage 3b, 4 mo. after birth of son. 29 yrs old and breastfeeding, ER/PR-, Her-2+ started Neoadjuvant therapy: 4x FEC, 10x abraxane & Herceptin
Feb 2011: L mx with recon. Path. showed only DCIS but 4/10+ nodes.
March 2011: 6 wks rads.
Mother passed, lower back pain.
Late May 2011: Bone mets but organs clear; Tykerb, Xeloda, Xgeva. Stopped Herceptin. Implant infected: removed implant.
October 2011: Bone progression; Gemzar and Carboplatin & restarted Herceptin.
Jan 2012: Progression, re-classified as ER+; Tykerb, Herceptin, Zoladex & Femara. Anti-E is working!
May 2012: ovaries out, markers stable but elevated. Cont. Herceptin, Tykerb, Xgeva & Femara.
Dec 2012: aromasin
Jan 2013: faslodex, herceptin, tykerb
Jun: Kadcyla
Aug: Rads to hip, then Perjeta, Herceptin & Taxotere
Nov 2013: Perjeta, Herceptin, Halaven
Early 2014: Affinitor, Aromasin, Perjeta, Herceptin.
June 2014: Estradiol, Perjeta, Herceptin
Aug 14: Tamoxofin, H & P
http://kristin-notdying-blog.blogspot.com/
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Old 06-02-2014, 10:20 AM   #2
Ceesun
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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
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Old 06-02-2014, 10:23 AM   #3
BonnieR
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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
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Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 06-02-2014, 10:33 AM   #4
KristinSchwick
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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.
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[B]Kristin
Aug 2010: diagnosed stage 3b, 4 mo. after birth of son. 29 yrs old and breastfeeding, ER/PR-, Her-2+ started Neoadjuvant therapy: 4x FEC, 10x abraxane & Herceptin
Feb 2011: L mx with recon. Path. showed only DCIS but 4/10+ nodes.
March 2011: 6 wks rads.
Mother passed, lower back pain.
Late May 2011: Bone mets but organs clear; Tykerb, Xeloda, Xgeva. Stopped Herceptin. Implant infected: removed implant.
October 2011: Bone progression; Gemzar and Carboplatin & restarted Herceptin.
Jan 2012: Progression, re-classified as ER+; Tykerb, Herceptin, Zoladex & Femara. Anti-E is working!
May 2012: ovaries out, markers stable but elevated. Cont. Herceptin, Tykerb, Xgeva & Femara.
Dec 2012: aromasin
Jan 2013: faslodex, herceptin, tykerb
Jun: Kadcyla
Aug: Rads to hip, then Perjeta, Herceptin & Taxotere
Nov 2013: Perjeta, Herceptin, Halaven
Early 2014: Affinitor, Aromasin, Perjeta, Herceptin.
June 2014: Estradiol, Perjeta, Herceptin
Aug 14: Tamoxofin, H & P
http://kristin-notdying-blog.blogspot.com/
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Old 06-02-2014, 11:12 AM   #5
SusanN
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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!
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10/18/12 Found pea size lump right breast
11/7/12 Biopsy
12/14/12 Lumpectomy
1/4/13 Rexcision, NO CLEAR MARGINS!! :(
2/11/13 Mastectomy with Expander Placed
2/15/13 INFECTION at Mastectomy site...emergency Surgery!!! Expander removed :(
DX: DCIS, IDC, Stage 2a, 2.7cm, 1/5 nodes positive
ER/PR-, HER2+++
3/28/13 Port placed
4/1/13 Begin 6 Cycles TCH Therapy
4/1/14 Finished Herceptin!!
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Old 06-02-2014, 12:35 PM   #6
lkc Gumby
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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.
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Linda

Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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Old 06-02-2014, 03:51 PM   #7
KristinSchwick
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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.
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[B]Kristin
Aug 2010: diagnosed stage 3b, 4 mo. after birth of son. 29 yrs old and breastfeeding, ER/PR-, Her-2+ started Neoadjuvant therapy: 4x FEC, 10x abraxane & Herceptin
Feb 2011: L mx with recon. Path. showed only DCIS but 4/10+ nodes.
March 2011: 6 wks rads.
Mother passed, lower back pain.
Late May 2011: Bone mets but organs clear; Tykerb, Xeloda, Xgeva. Stopped Herceptin. Implant infected: removed implant.
October 2011: Bone progression; Gemzar and Carboplatin & restarted Herceptin.
Jan 2012: Progression, re-classified as ER+; Tykerb, Herceptin, Zoladex & Femara. Anti-E is working!
May 2012: ovaries out, markers stable but elevated. Cont. Herceptin, Tykerb, Xgeva & Femara.
Dec 2012: aromasin
Jan 2013: faslodex, herceptin, tykerb
Jun: Kadcyla
Aug: Rads to hip, then Perjeta, Herceptin & Taxotere
Nov 2013: Perjeta, Herceptin, Halaven
Early 2014: Affinitor, Aromasin, Perjeta, Herceptin.
June 2014: Estradiol, Perjeta, Herceptin
Aug 14: Tamoxofin, H & P
http://kristin-notdying-blog.blogspot.com/
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Old 06-02-2014, 03:59 PM   #8
Cat
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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
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3/06 DX stage III er-pr-her2+++ breast, 1+node
age 49 and 364 days
3XAC 4X taxol and herceptin continue herceptin one year
bilat mastectomy w/TRAM
32 rads
9/08 recurrance 4 sternal nodes
mediastinoscopy, able to remove 3
taxotere, carboplatin, herceptin, x6
continue herceptin indefinately
5/10 recurrance in same node/area
mediastinoscopy, removed nodes
added tykerb
27 rads
10/18/10 PET shows inflammation no active disease
8/2011 recurrence one right mediastinal node, xeloda and proton radiation to node.
D/C xeloda due to toxicity
12/5 PET scan clear
2/2012 colon blockage, breast cancer
(never thought it could go there! thought I was constipated)
start abraxane, herceptin, continue tykerb
10/2012 Kidney ablation (renal CA!)
3/2013 CT and biopsy R kidney (BC met to R kidney)
4/4/2013 Begin Kadcyla
7/30/13 Craniotomy cerebellar mets, 1.7cm 3cm
Sept 4-6 post op cyberknife
Sept 23 ablation right kidney (blow up pesky breast ca met)
Oct headaches MRI Oct 10 (only surgical changes ! Yay!)
Short of breath. CT, pulmonary function, echo
New crap in right lung heart good. Pooh!
12/13 DC kadcyla. Begin halaven
2/14 MRI brain NED Yay!
4/3/14 CT mostly stable but breast mets r kidney growing
4/16/14 ablation right kidney again
Continue halaven, tykerb
dc halaven gemzar?
2nd opinion May 14
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Old 06-02-2014, 08:07 PM   #9
CarolineC
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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. Letís 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. Youíve 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 letís 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 arenít 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 couldnít 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). Iíve 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 Iím 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 donít know. I do know that youíve 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
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Dx Age 47 July/09 Stage 2B/3
Left Mast. Aug 09- 1 of 3 positive nodes in axillary dissection (yes only 3)
ER+ 90%, PR+ 20%, HER2+++
4 x AC, 4 x Paclitaxol and H (Neupogen for 7 cycles), Herceptin complete Nov 10
MarĖApr 2010 25 Rads
Apr 10-Oct 11- Tamoxifen
Oct 11 Ė 3 cm met to sternum
Oct 11-Letrozole for 3 mths, start Clasteon-bone remodeller
Nov-Dec 11 - Happy 50th Birthday -20 rads to sternum
Jan-April 2012 Taxotere/Herceptin-6 cycles (Neupogen for 5)
Herceptin every 3 weeks-Letrozole added Nov 2012
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Old 06-02-2014, 10:29 PM   #10
Adriana Mangus
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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
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1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 06-03-2014, 12:02 AM   #11
michka
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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
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 06-03-2014, 12:18 AM   #12
Bunty
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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
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dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
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Old 06-03-2014, 01:10 AM   #13
Pamelamary
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Posts: 484
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
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 06-03-2014, 01:46 PM   #14
yanyan
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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 !!!
__________________
1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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Old 06-03-2014, 08:21 PM   #15
mamacze
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Posts: 633
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 donít 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?Ē
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)
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2001 - Stage 0, lumpectomy, radiation, tamoxifen

2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.

2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle

2011 - Still Herceptin only and NED


2011, June - STOPPED Herceptin and kicked up my heels!

2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.


2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine


2020 On Herceptin and NED continues - WOOT WOOT!
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Old 06-04-2014, 08:31 AM   #16
DianaMK
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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.
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12/2006 right lumpectomy - HER2-Stage 1
A/C x 4
Radiation
Herceptin - one year
6/2010 - Stage 4 - lung and skin mets
Lung resection
TCH x 6
12/2010 - right mastectomy
On Herceptin
Scans every six months
11/2013 - stable continue to watch spot on lung
Continue on Herceptin
6/2016 - 6 years Stage 4 - stable - continue Herceptin
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Old 06-04-2014, 06:42 PM   #17
Vicky
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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!
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3-16-11 dx IDC 4.4 cm tumor, right breast,HER-2 neu 3+++, Stage III
3-25-11 PET scan shows 3 mets to liver and 1 to spine, Stage IV
4-12-11 start clinical trial of TDM1 infusion 1x every 3 weeks.
6-14-11 CT scan after 3 cycles shows NO liver spots, reduced spinal met from 18mm to 13mm and right breast mass from 4.4 to 4.2 cm.
8-12-11 Mastectomy rt. breast.
10-11 scans reflect stable cancer
12-11 MRI reveals area of concern in brain, CT scan reveals 3mm spot on lung. Watch and wait and rescan in a few weeks. Round 13 TDM1 complete.
2-21-12 Scans reveal progression in lungs with 4 new small mets. Officially off tdm1. Start halaven and radiation for single brain met, 1 spot in spine.
3-13 stereotactic radiosurgery for single brain met.
5-31-12 Halaven stopped due to low blood counts. Start tamoxifen and cont. Herceptin 1x3 weeks.
7-11-12- brain mri shows shrinking brain met and no new lesions. Cont. Herceptin and Tamoxifen
10-2-12 Stable tumor markers. Continue Herceptin and Tamoxifen
4-9-13 progression in lymph node under arm and new lung spots. Stop Tamoxifen. Add Xeloda to Herceptin.
6-10-13 Stereotactic radiosurgery to two new brain mets. Stop Xeloda due to lung mets progression. begin Tykerb 7-2-13.
10-29-13 Begin radiation to my lungs and one lymph node under my arm. Stop Tykerb until completion and then recommence.
1-31-14 Progression in lungs. Oophorectomy performed.
2-18-14 Begin Arimidex and continue Herceptin
7-7-15 progression with spots on colon, in pelvic region, and in lungs. Begin Taxotere, Perjeta and Herceptin.
11-15 Switch to weekly Taxol, and continue with Perjeta and Herceptin.
12-23-16 PET scan shows Complete Response with no new spots. Continue on with TPH indefinitely.
3-16-16 Still no evidence of disease, break from Taxol. Continue on with Perjeta and Herceptin.
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Old 06-04-2014, 08:18 PM   #18
Kkmom
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Posts: 168
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
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[FONT=Tahoma]Dx 12/14/2012, IDC, 2cm, Stage II, Grade 2, 4/5 nodes, ER+/PR+, HER2+[SIZE=2][COLOR=Blue]
Surgery 12/28/2012 Lumpectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right)
Chemotherapy 02/06/2013
Herceptin, Carboplatin, Taxotere Started 6 rounds on 02/06/2013 Herceptin
Finished chemo - May 22, 2013
Radiation Therapy 06/12/2013 - 36X External
TM Marker - 13 October, 2013
TM Marker - 15 November, 2013
Annual Mammagram - 3D - Both Breast - CLEAR!!!
Colonscopy - 1st-Clear - November 18, 2013
CT Scan-Results-Clear - November 27, 2013
BC Diagnosis-1 Year - December 14, 2013
TM - holding steady at 15 - December 24, 2014
TM - 24.2 - January 12
Herceptin Treatment - Last One-February 4, 2014!!!
TM - 3.7 - February 4, 2014
MRI & CT - February 21, 2014 - All Clear
NED - and my doctor said - "well, it looks like you are NED - your MRI and CT are clear - Febuary 25, 2014
TM - 18.2 - February 21, 2014
Port Removed - Scheduled for Wed, March 19, 2014
Port Removed - Yeah!!! I feel lighter already!!!
TM - 15.3 - March 25, 2014
Diagnostic 3D Mammogram - Rt Breast - All Clear!!! - Tuesday, May 13, 2014
TM-15.5 - June 25, 2014
Diagnostic 3D Mammogram - Nov. 2014 All Clear!!!
Diagnostic 3D Mammogram-Rt Only-May,2015-All Clear!!!
Diagnostic 3D Mammo-Annual-Nov 2015-Right Clear!!! - Left Breast-found 5 mm CYST. Aspirated - all clear!!
TM - Nov 2015 - 18.2
NED-December, 2015 - 3 Years NED!!!
TM-Feb 2016 - 13.7
TM-June 2016 - 13.3
TM-Oct 2016-10.0
Annual 3D Mammo-Nov, 2016-All Clear!!!

Annual Mammogram - November 2017 - ALL CLEAR. i AM 5 (YES) YEARS OUT!!!

NED - 8 Years Out!! - December, 2020
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Old 06-05-2014, 11:18 AM   #19
Joan M
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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.
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 06-05-2014, 11:37 AM   #20
donocco
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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
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