Hi,
I had a SS tumor in my right arm in Feb 2012. Was fully resected with clean margins. It was 10 cm.
I also had Radiation therapy. I was having cough and some breathlessness for the past 3 weeks and I got a chest x ray and then a CT scan which revealed that there is a 9 cm tumor in my right lung and also some other small nodules.
Also I have lot of fluid in my left pleural space.
Could you guys please help me with some suggestions on the course I should take.
I am in NY.
thanks
Are you being seen by a sarcoma specialist? I recommend my oncologist Gerald Rosen at NYU:
For my lung metastasis I saw Dr. Manjit bains at Memorial Sloan-Kettering Cancer Center. I recommend him, he was wonderful.
Thank you all for the replies.
I have one question. My PCP is suggesting to get the fluid drained first and perform a biopsy on the fluid and also on a lung tissue. But he said because of my history with SS it is 99.99 % a metastasis - my question is should I directly go to a specialist or get the fluid drained and get a biopsy to confirm that it is malignant.
thanks
SSarm, don't let a PCP handle this! How many synovial sarcoma patients has he seen in his career? Most PCP will never even see one. Do go see a specialist!
Thanks Espesset.
I got an appointment of Dr. Bains at Sloan Kettering tomorrow.
I am hopeful and praying.
thanks
SSarm said:
Thanks Espesset.
I got an appointment of Dr. Bains at Sloan Kettering tomorrow.
I am hopeful and praying.
thanks
You are going to like Dr. Bains, he is very soft spoken and kind. The doctors and nurses at Sloan Kettering call him Magic Hands, because they have seen him perform magic. Have faith in Dr. Bains.
Treat your SS as aggressively as you can each time it returns. Like yours, mine to started in my right arm back in 1991. Research your doctors and the treatments. Know your cancer inside and out. Ask as many questions as possible. You are your best asset in beating back this demon. Fight like hell - it's worth it!
Hi,
I just returned from an appointment with Dr. Bains.
He was very kind. He drained the fluid from my lung. But unfortunately he said that surgery is not a possibility in my case since there are multiple nodules/masses. I got an appointment of the chemo oncologist for this Friday.
Do you guys have any suggestion on going ahead with chemo. Since this is in an advanced stage will the side effects of chemo weaken my immune system and cause other illness.
I am not even sure what I am trying to ask. I am confused and not sure about what I should/should not do.
thanks
Hi Ssarm,
I think you should do chemotherapy and go on a diet that strict’s you from eating any sugar and just little carbohadrates.
I was diagnosed with SS early this year and my tumour was big 10.5 cm i had a surgery and having radiotherapy now and then will have chemotherapy.
I heard that a good diet can also help, i also read that hemp oil helps i will also try that.
I hope you get better and kill all the cancer cells you have
Just a suggestion... Ask about the various types of chemo and their effective rates. I was on Ifosfamide, Doxorubicin + Adromycin (was not effective at all), Votrient (effective for 21 months) There is also Yondellis (sp? - never tried). There are also new drugs and immune therapies in clinical trials. I researched these clinical trials and showed my Oncologist the studies I was interested in. He narrowed those down to the 6 that I was a good match for.
Surgeons also have a different option than oncologists on how to treat cancer. They like to remove it. I've been thru 3 lung surgeries. My oncologist and surgeon did not always agree on the best treatment. You may want a 2nd opinion.
Best of luck!
SSarm said:
Hi,
I just returned from an appointment with Dr. Bains.
He was very kind. He drained the fluid from my lung. But unfortunately he said that surgery is not a possibility in my case since there are multiple nodules/masses. I got an appointment of the chemo oncologist for this Friday.
Do you guys have any suggestion on going ahead with chemo. Since this is in an advanced stage will the side effects of chemo weaken my immune system and cause other illness.
I am not even sure what I am trying to ask. I am confused and not sure about what I should/should not do.
thanks
Will you be seeing an oncologist at Sloan Kettering?
As Jim said there are different types of chemo. Since you never had chemo, they may offer the conventional AIM (adriamycin also called doxorubicin, ifosfamide, mesna) for a start unless they have a trial that fits your need. I would ask about TH-302 and whether doing AIM now would prevent you from doing TH-302 later. The drug may be approved at the end of the year to be given in combination with doxuribicin but doxuribicin cannot be given for more than a given number of cycles because of heart toxicity. When TH-302 gets approved (if it does), will they be allowed to give it alone?
So it may be more appropriate to start with high dose ifosfamide since it tends to be effective on synovial sarcoma. Also, you may want to get more than one opinion just because different places offer different trials and they have an interest in putting you in their own trial and not a competitor's trial. Also keep in mind that most trials don't work. But then it's like playing lottery, you could get a miracle drug...
You can check for trials here:
In the search box, you would put either "synovial sarcoma", "soft tissue sarcoma" or "solid tumor".
Starting chemo now will give you time to search for other options.
SSarm said:
Hi,
I just returned from an appointment with Dr. Bains.
He was very kind. He drained the fluid from my lung. But unfortunately he said that surgery is not a possibility in my case since there are multiple nodules/masses. I got an appointment of the chemo oncologist for this Friday.
Do you guys have any suggestion on going ahead with chemo. Since this is in an advanced stage will the side effects of chemo weaken my immune system and cause other illness.
I am not even sure what I am trying to ask. I am confused and not sure about what I should/should not do.
thanks
Sorry to hear that but were u having ctscan every 3 months after u have finished you treatment ?
Yes not exactly for every 3 months I am afraid -- that is my mistake.
Last X Ray was on 09/05/2013 which was clean.
Is it possible that there would be a 9cm mass growth since Sep last year. Is SS that aggressive.
thanks
Yes, SS can be that aggressive :-( That's why CT scan every 3 months are recommended...
For the first year you should have a CT Scan every 3 months then every 6 months. SS is very aggressive and should be treated aggressively in the states they recommend chemotherapy but in the UK they say it doesnt help much.
My tumour was also 10 cm but iam just at the beginning of my treatment iam just hoping to god that when i finish all my treatments the cancer will not show up again.
Love him!!! Mad scientist! And those bow ties…
Elodie Espesset said:
Are you being seen by a sarcoma specialist? I recommend my oncologist Gerald Rosen at NYU: