An overview of survivors' experiences with lung mets

[Mary]

This is the information that we have on members who have dealt with lung mets
(all of them had osteosarcoma and had surgery to remove mets unless noted):

Name       Type of Mets                            Chemo?                      Status
Todd        low grade mets 4 years out        no chemo                   multiple recurrences with long-term survival
Karen       low grade mets 6 months out     no chemo                   multiple recurrences
Elizabeth   CS mets 24 years out                 clinical trial history     mets remain stable long term, no surgery
Eileen       low grade CS mets 4 years out     no chemo                   unknown outcome

Gabi         high grade met 11 years out       no chemo                   clear for five years
Katie        high grade mets one year out     more chemo                Long Term survivor
Jennifer    high grade mets five years out    more chemo                Long Term survivor
Sami        high grade met 11 years out       more chemo                Deceased
Nick         high grade met 6 months out     more chemo                 Long Term survivor
Matt        high grade mets 2 & 3 years       a little more chemo       Long Term survivor

If you use the search box at the main ABC Survivors site and type "lung mets" you can read all of these stories. There are also a lot of survivors of Chondrosarcoma mets in the Yahoo Group.

I am NOT suggesting that a certain treatment is right or wrong. Studies have shown mixed results in treating sarcoma mets.

[Cari]

Thanks Mary!--Ok so that is interesting--the majority with High Grade mets had more chemo--HUMMMM Interesting........

[Mary]

From Karen, about her husband Todd:

I'd be happy to share my husband's story, if it helps.  He was diagnosed with chondroblastic osteosarcoma at at age 26 in April 2004.  After completing chemo and limb-salvage surgery, he was NED for 10 months.  In November 2005, they discovered the mets in both lungs on a CT scan.  He then did 4 months of HD Methotrexate chemo, followed by an 8-week waiting period to see if the nodules would stay stable.  They grew slightly, but no new spots showed up, so we elected to have surgery.  He had a thorocotomy on the right side on 5/5/06 and another one on the left side on 5/22/06.  The first scan following the surgeries showed that a spot had been missed, and so Todd did inhaled GM-CSF for two months.  The tumor grew and new spots showed up, so in September 2006, he started a Doxil and Avastin chemo.  He stayed on this until the end of March 2007, when the spots started growing again.  He has just recently switched to Gemcitabine and Taxotere chemo, and we are planning to do another lung surgery to remove a large spot from the left side at the end of May. 

It has been exactly 3 years since Todd's initial diagnosis, and about 1.5 years since the lung mets were found, and will things aren't ideal, Todd is still alive and feeling good overall. I beileve he has 4-5 main lung nodules right now, with other "indeterminate" spots scattered.  When they removed the nodules a year ago, there were about 15 total from both lungs.

There is also detailed information can be found on our website - www.caringbridge.org/visit/toddandrews.

[Mary]

From Vesna, Mom to Lucija, age 16.

dx.high-grade osteo. 7/2000 (10.5 years old)
tibia limb sparing surgery 9/2000 (adria, cisplatin, HD MTX, ifosfamide 18 chemo COSS protocol)
thoracotomy 08/2001 (bilateral - 3 spots)
chemo 8/2001 (alergic reaction on etoposide, adria cisplatin  1 chemo, HD ifosfamide - 6 chemo, L-MTP-PE 9 months)
2 lung spects 05/2002
thoracotomy 7/2002 (solitary nodule)
dendritic cell vaccine 8/2002 (under skin)
local recurrence 10/2002 - dendritic cell vaccine 11/2002
thoracotomy 1/2003 (solitary nodule)
chemo 1/2003 (etopophos, carboplatin - 4 chemo)
dendritic cell vaccine 8/2003 (to lymph node)
NED in 2007

[Jessica]

Thought I'd add my experience.

Original diagnosis high-grade osteosarcoma in left humerus 6/88 - one nodule in left lung 1990 - had it surgically removed followed by 10 treatments of VP-16 with ifosfomide followed by clinical trial of MTP-PE. Clear for 18 years

[Stephanie]

High grade osteosarcoma    Oct 1999
Chemo and resection for about a year,
Lung mets one nodule 2008, thoracotomy, no chemo
Scans every three months. 
I'm surprised here by the amount of you who have had chemo, this just waiting for the scans is making me batty.
Thanks!

[Cari]

First lung let in 07 removed by scope- do to location of spot(s) new about one found more in there when they did the surgery --removed all with clear margins no chemo needed.
Lung met 3-09 in middle lobe- could not reach it by scoping so had to have middle lobe removed. 
Primary recurrence and amputation 4-09. No chemo at this time and no radiation to area to avoid damaging more parts of the lung or other organs.