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Old 11-24-2015, 10:48 PM   #1
yanyan
Senior Member
 
Join Date: Apr 2011
Posts: 403
Multiple lung nodules any idea?

While pleural effusion can be drained, multiple lung nodules seem only controllable by systemic therapy. Does anyone have any successful experience in treating this condition? Could avastin be of any help? I am not a candidate for lung resection or radiation because the nodules are multiple. I'm very scared and feel hopeless! I cough constantly and my doctor does not yet have a new treatment plan. Although I have been on all sorts of chemo for skin mets, there might be a possibility to revisit some medicine I used in the past. Thanks for your input!
__________________
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 11-25-2015, 09:34 AM   #2
Pat94
Senior Member
 
Join Date: Jul 2013
Posts: 100
Re: Multiple lung nodules any idea?

Wish I could help but I can't with your question. I have you added onto my prayer list.
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Old 11-25-2015, 11:08 AM   #3
bonjourpug
Junior Member
 
Join Date: Aug 2013
Posts: 3
Re: Multiple lung nodules any idea?

Hi,

I'm a lurker on these boards, and I haven't dealt with lung mets ... but looking at your profile, there may be a couple of things you could discuss with your onc:

Have you had tumor tissue sequenced (e.g., via the Caris or Foundation Medicine tests)? If you have tissue stored or could get new tissue, and you haven't had the test, it might be a good idea to try it. For example, if you find a PI3K mutation, Afinitor may be effective, particularly in combination with chemo (mutation aside, the BOLERO-3 trial showed good results when combining Afinitor with Herceptin and Navelbine). Afinitor is on-label for hormone-positive breast, but if you had the mutation, insurance may be more likely to pay for it. I believe the reports from Caris and Foundation will show all the markers for which you test positive, even if there are no approved drugs for that target yet - so you can use those results to search for studies for investigational drugs on Clinical Trials.gov.

On traditional chemo, it looks like you haven't had irinotecan, which is not used super commonly in breast but could be something to try in combination with Herceptin. Carboplatin if you want to revisit the platinum agents, and Taxotere if you want to revisit the taxanes, could be options. Avastin is one of those mysteries where it works amazingly for some people, even in breast, and we just don't know for whom or why. For me personally, I probably wouldn't roll the dice on Avastin if I weren't also combining it with a chemo agent.

Depending on where you're located and if you're open to joining a trial, I've heard good things about ONT-380 and liposomal doxorubicin (called MM-302). But there are lots and lots of trials out there.

Good luck, and keep us posted,
Lauren
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Old 11-25-2015, 11:23 AM   #4
thinkpositive
Senior Member
 
Join Date: May 2014
Location: San Diego
Posts: 411
Re: Multiple lung nodules any idea?

yanyan,

I'm so sorry you are feeling badly. It sounds like Lauren has offered some great suggestions for you. Hoping that these will work for you.

I'll be sending positive healing energy your way.

Take care,
Brenda
__________________
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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Old 11-26-2015, 06:02 AM   #5
yanyan
Senior Member
 
Join Date: Apr 2011
Posts: 403
Re: Multiple lung nodules any idea?

Thank you very much ladies for your kind wishes and wise input! I'll be back in the US next week. My doctor is still trying to get Opdivo for me. Mm302 is something I was offered but I was doing radiation and at the time didn't have lung mets. I know there is still hope but it also feels like shooting in the dark. Many times it is racing with time!

Happy Thanksgiving sisters! Enjoy the time with our loved ones !
__________________
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 11-28-2015, 04:02 PM   #6
supportwife
Senior Member
 
Join Date: Oct 2014
Posts: 49
Re: Multiple lung nodules any idea?

Hi Yanyan,

Not sure where you are located but UCSF is doing chemo with liposomal Doxil and it sounds promising. ALso they are doing a clinical trial with enzalutamide if you are er- and pr- also your tumor has to be androgen receptor +ve.
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