Hello, I am currently undergoing chemotherapy for some small lung nodules after having my primary SS removed from my foot (amputated). I am on Doxorubicin/Ifosfamide. Completed 1 of 6 cycles. (Very unpleasant)
Has anyone else on here been successfully treated for the same thing? (all nodules are <1cm)
I suppose I’m just looking for some confidence/reassurance as everything I read online is so negative. I am 19 years old and from the UK.
Thank you
How many nodules do you have? Is conventional surgery an option? I've had 6 lung surgeries (5 Video Assisted Thoracic Surgery called VATS where the surgeon makes small holes under the arm and one classic surgery with opening in the back). I am currently in remission (first lung surgery in 2008). Whether surgery is possible depends on the location and number of nodules. When conventional surgery is not an option, sometimes laser surgery can be an option and the specialist for that is Dr. Rolle in Germany.
Thanks for your reply.
My specialist consultant has said that surgery is an option for me but his reccomendation was to try the chemotherapy first to see if it can take care of them. I have 2 definite nodules (6mm and 1mm), and then 3 other spots on the scan that they can not determine yet because they’re so small. (So possibly 5)
Did you have chemotherapy too ? Or just surgery?
I did have chemotherapy (high dose ifosfamide) and radiation therapy on the biggest nodule. The chemotherapy made the center of the biggest nodule somewhat "lighter" (not as dense) but didn't decrease the overall size which may have been an indication the tumor wasn't very active. I was told that even if the nodules disappear with chemo they will eventually reappear. Chemotherapy may be a good tool to get rid of the cells that are more active and aggressive.
I haven’t been told that they will definitely recur after chemo but I’ve gathered it from the researching I have done. I will be opting for surgery anyway. Thanks, how many nodules/what size did you have?
I hope the chemo will also be killing any cells that also can’t be seen on a scan that could be lurking in my body.
Thanks for the info, I am looking into laser surgery now
I would say run to Germany! I just had 54 nodules removed. I went through 5 high dose cycles of ifosfimide and all cycles reduced the size of the nodules. The doctor did tell me after I asked that the chemo would never get rid of the nodules. Maybe make them smaller or stop their growth for some time but not end the cancer which Is our goal right. Dr. Rolle will only operate if you ONLY have it in the lungs. I would overnight a CD of your last CT to him. He usually prefers you have 2 cycles of chemo before surgery then wait 30 days and operate. This is where I heard from him. http://sarcomatreatments.blogspot.de/2009/03/our-experience-with-laser-lung.html?m=1
My insurance covered most of it but I did have to pay out pocket and get reimbursed. Please at least get Dr Rolles opinion. Do not wait until it is to late. I heard he turns down 9 out of 10 patients because they come to him much to far in the process.
Oh and I forgot to mention in the US they told me I originally had about. 31 nodules and before surgery only 7! Dr rolle found 54! Please feel free to contact me with any questions. There are very few doctors in the US who will reccomend this surgery because of the FDA but I know of at least 2 and can provide their contact info.
Thanks a lot for the information 
very interesting. I’m currently being treated over in the UK so things work a bit differently over here in terms of insurance etc. All my conventional treatment/surgery is covered automatically but I should be able to fund the surgery in Germany without a problem.
I’m being treated by a sarcoma specialist and he told me the aim of the chemo at this point is to completely kill the cancer. So do you mean that it is a fact that chemo will never end the cancer? Or did he just mean your case? It has only been confirmed in my lungs. My primary tumour was 100% removed as my foot was amputated with a 5cm clear margin.
How big were your mets? How painful is the surgery? And do you breathe as normal now?
I am definitely considering this. I go for my second cycle of doxo/ifos on Tuesday and I have a CT scan after my third to see how things are going so I’m guessing that’s the best time to make a move
And do you need to be recommended by a doctor for the surgery or do you simply apply yourself and go? (Last question)
Hi,
My son had Synovial had his legs amputated. Stop the chemo and radiation it does not work and will only make your immune system weaker. Go to Germany for surgery with Dr, Rolle or Mexico for DMSO, Laetril and Vitamin C shots these three work together in a synergistic way to kill the tumors. Dr Alvarez Stella Maris Clinic Tijuana , Mexico 619 ■■■■■■■■ USA Toll free 1800-■■■■■■■■. Become totally organic and check your urine for ph levels. Stop all sugars. You need to be at 7ph. Prayers for your journey. Be strong and courage's, God bless you.
Synovial Mom
Synovial mom - I apreciate the kind words. I already drink high alkaline water and eat very healthy food when I can(although the chemo makes that hard) I think that I am going to go to Germany after my next scan.
I never had more than 3 nodules at a time. The biggest one was the first one (probably about 4cm) and you can see the pictures here:
https://sites.google.com/site/synovialsarcoma/metastases
mlukeuk said:
I haven't been told that they will definitely recur after chemo but I've gathered it from the researching I have done. I will be opting for surgery anyway. Thanks, how many nodules/what size did you have?
I hope the chemo will also be killing any cells that also can't be seen on a scan that could be lurking in my body.
Thanks for the info, I am looking into laser surgery now
Thanks for the good news! That sounds promising!
Townclerk said:
MY husband's is in his lungs. He was doing a trial drug of doxorubicin and the trial drug TH-302. It was rough but he made it through. He is now on just the trial drug doing maintenance. The tumors are still shrinking and some are gone. Doctor is amazed at how well he is doing. He looks good and feels good. It is just a pain doing the chemo - one day a week for two week and one week off and then it starts again. It is promising.
I am in Germany now and I say come to Germany. Just ask your oncologist what the chances of you going into FULL remission not getting smaller or stop growing. It took me Asking a few different ways but synovial sarcoma is stubborn! I bet (sadly) that most chemo will not get you to full remission…just maybe get them small enough to not be seen on a scan and bam after some time they grow back! Dr Rolle is very good at explaining this. After my chemo they told me I went from 31 to 7 lung nodules…dr rolle somehow removed 54! That’s why I can not trust him 100%. Send your scan now and make up your mind in the mean time. He takes a day or two or more if he is on holiday to review them and give you a thumbs up. Email me for more info as this site doesn’t tell me you wrote me. It’s dilynda @gmail.com
My largest nodule in the beginning I believe was less than an inch…I have reports but well I can send them if you’d like. The surgery is not painful at all if the epideral stays in place if not it is very painful for a few days. Once the drainage tubes are out you feel awesome. 2 weeks and you feel normal just a tiny bit of pain. My breathing after the first surgery was normal but after the 2nd it is a bit harder. Dr Rolle said I should not lose too much lung capacity if I train. It all depends on what he removes. And you are correct he wants 2 cycles of chemo in my case and I listened to the doctors at home and did 5! Listen to dr rolle he says if they are too small he will not find them (even thought they are still there) so he can not remove them and they will grow eventually. I seriously love this man!
Chemo and radiation work for some people and don't for others. The 6cm mass in my left groin/thigh shrunk in half after chemo and radiation. I just found out I have several tumors in my lungs and my lymph nodes now so we'll see what happens. When I see some progress I shall let you know and reassure you that this is treatable, as I'm sure it can be!
Miss, You said that you had Surgery with Dr Rolle. We are in
Elodie Espesset said:
I never had more than 3 nodules at a time. The biggest one was the first one (probably about 4cm) and you can see the pictures here:
https://sites.google.com/site/synovialsarcoma/metastases
mlukeuk said:I haven't been told that they will definitely recur after chemo but I've gathered it from the researching I have done. I will be opting for surgery anyway. Thanks, how many nodules/what size did you have?
I hope the chemo will also be killing any cells that also can't be seen on a scan that could be lurking in my body.
Thanks for the info, I am looking into laser surgery now
Miss,
Trying to figure this messaging. I just joined. My daughter is about to see Dr Rolle in Germany. Can you share your experience with this Dr. His reputation/insurance coverage/cost/treatment..