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Old 06-02-2014, 08:07 PM   #1
CarolineC
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Join Date: Oct 2011
Location: British Columbia, Canada
Posts: 139
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
__________________
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
Mar–Apr 2010 25 Rads
Apr 10-Oct 11- Tamoxifen
Oct 11 – 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   #2
Adriana Mangus
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Join Date: May 2006
Location: California
Posts: 668
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
__________________
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   #3
michka
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Join Date: Feb 2007
Location: Paris, France
Posts: 858
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
__________________
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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