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Synovial Sarcoma - Suggestions Please?!


#21

This is a good point. I am a survivor with no recurrences. This June will be 15 years. I had 2 surgeries and that was it. No radiation or chemotherapy. Just wanted to share a positive story. Best of luck to all!

ufonaut said:

Every case is different which is why I didn’t explain mine on purpose. Don’t be swayed by what did not work for some. Keep in mind as well that many people who survive and have no re-occurrence, like me usually don’t post on boards like this. They move on, etc.

-Jesse


#22

What I have seen............amputations seem to have the best results. Chemos are a crap shoot and the beast almost always returns. Good Luck and bless you!!


#23

Once again, please do not make assumptions for others based on a personal experience. This is not helpful when you don't have a medical degree or any knowledge of the specifics.

Amputation is an extreme thing to approve. I do not suggest that you look to this board for an answer on that question.

-JS


#24

For me, since my tumor was under my collar bone, I would require a forequarter amputation. They'd have to amputate my shoulder. Then there's still a chance that it could come back. No thanks.


#25

Hi, my name is Dale. I am 56 year's old and i had synovial sarcoma in my left foot. The tumor was a 4.3cm located near the arch of my foot. I had 2 option's: operat to remove the tumor have skin graph's, rad. and kemo. Or i could have it amputated. I opted to have it amputated. Although i am over 50 yrs. old i am still very active work full time over 60 hrs. a week and do all kind of out door activitie's. Use your own thought's in what to do, you are the one that will have to live with your decesion. What are your plan's after your surgery, and how do you want to live your life. You are the one that has to plan what to do with your life. Live life to the fullest and don't accept defeat at anytime. You can have a full and active life after your surgery. Decide what you want to do befor surgery and then full steam ahead with your life. God Bless you and i wish you the best!!


#26

hi this is paramjit, i also had the synovial sarkoma in right tibia, my doctor removed it by surgery b4 2 years, but after 2 months it comes to my lungs, than i took 3 cycles of chemotherapy, but the problem is still there, i dont know the way out, only GOD can sort out the problem, i m from india, here the doctors are not care about the money than patients.....Actually my doctor did'nt know the actual procedure, i m telling you i think chemotherapy is the best way, there is a formula that called MAID, u cans consult ur doctor. If get something new about tell me toooo, tnx


#27

There is a new chemo pill available here in the US called pazopanib that has had good success with synovial sarcoma my husband is due to start it as sson as he can have a PET scan done hopefully in a few weeks. His sarcoma is in his lungs as well Don't know if this would be available there, it costs about $7000 a month here if you don't have insurance. So don't know how feasible that would be for you. Best of luck.

Paramjit said:

hi this is paramjit, i also had the synovial sarkoma in right tibia, my doctor removed it by surgery b4 2 years, but after 2 months it comes to my lungs, than i took 3 cycles of chemotherapy, but the problem is still there, i dont know the way out, only GOD can sort out the problem, i m from india, here the doctors are not care about the money than patients.....Actually my doctor did'nt know the actual procedure, i m telling you i think chemotherapy is the best way, there is a formula that called MAID, u cans consult ur doctor. If get something new about tell me toooo, tnx


#28

My Grandson Relapsed.....A few Months Ago after a 9 month battle My Grandson was scanned and found to have no cancer in his foot, groin , Knee, Leg and Lungs. All areas where cancer had been found in April of 2011. The first scan after he had had been told he was in remission showed all the old nodlues had re appeared in his Lungs and a few new ones were found. The Doctors said there were no signs of any Cancer in his foot, Knee , leg Or Groin...but the Lungs definetly showed Cancer growths. He Had Radiation and Chemo Thearpy of Doxarubcin and Ifoximide ( Not sure of spelling ) ..,Now hes being told that he cannot go back on the Doxirubicin which helped, because of the damage which it may cause to his heart and the fact that the cancer has seen it already, may not get the same result. We are now looking at a number of Clinical Trials at CHOP ( Childrens Hospital Of Philadelphia ) and any other place..Can anyone out there suggest any succefull trials that may help ?....Any Responses would be appreciated...Thank You Frank


#29

Hi Shannon.....I am sorry to hear about your tough decision...But I can tell you that My grandson was diagonsed with Synovial Sarcoma in April of 2011. At that time it had already metastized and was in his Foot, Groin, Knee, Leg and Lungs...and although he was found to be cancer free in January we just found out that he Relapsed and it returned to his lungs. I know its a tough decision but knowing what we know about this soft tissue cancer you should consider yourself lucky that you found it before it spread. I wish we had to make that choice with my grandson..but we dont.. Although its a personal decision, since you asked ...I would amputate..knowing that you have your entire life ahead of you cancer free if you do.....God Bless you and I will keep you in my Prayers regardless of your decision...Frank


#30

Hey, Shannon, I had a 3.5 cm tumor on the top of my foot. The Dr. I used was Mark Scarbrough with Shands in Gainesville, Fl. First I had a biopsy on June 1 2010. Followed by Radiation in July and then on August 24 they removed the tumor and area around it along with 2 ligaments and an artery. They then did a graph from my upper arm which included the removal of an artery from my arm. Your arm has 2. I do not regred my choices at at all. As of this time I am cancer free and I can walk. I have 2 children and felt that inability to walk would hamper my lifestyle greatly. I have very little pain unless I am on feet for a long time and I am doing great.


#31

Hi Joes Mum,

My son was diagnosed with ss on his foot and we went with surgery with clear margins and then chemo, doxorubicin and ifosomide, that was 2 and 1/2 yrs ago and to date our scans are still showing no evidence of disease, I was very interested to know what side effects your son has had with the same chemo? how long ago was it from he was diagnosed?

JOE'S MOM said:

My son was dx with synovial sarcoma when he was 18..we did the chemo and rad and surgery route. But if I would have known what he would have faced later on I think we would have really thought about amputation. He was right handed and only 18 at the time and the tumor was on the right forearm. He goes to Hillman Cancer Center in Shadyside. His surgeon was Dr McGough and his cancer dr is Dr Tawbi. Who do you see? Would like to hear from you. Take care and if you need anything just let me know.


#32

in 2009 he had a lump on his arm that kept growing in 7/09 he started complaining that it hurt wast bx and dx in 8/09 we had chem ifos and doxirub and mesa from aug to oct and radiation in nov with surgery and removal clean margins in 12/09. Had f/u scans in march or april 2010 which showed a couple of spots they watched them then they removed one tumor 6/10....then they came back in both lungs he was put on a clinical study for a vaccine ny-eso he did not have any problems with it it just did not work the tumors grew. we then went on another study ?sp termserimius and a pill. He had really bad side effects mouth sores so bad that he could not eat or drink he lost 25 pounds and a skin rash that went from his heal to hips that left scars....which are just now fading. That failed as well. He had lung in 6/11 on his left where they removed the lower lobe and a wedge on the top and in 8/11 they did the right lung with a wedge on the bottom and top were removed. And eight weeks after surgery there were spots in the pleural area so now he is on ifos and mesa with good results....side effects are that he gets sick a couple of days after treatment. We are just finishing up a two month break from chem we have scans on the 4th of may and will prob have to start back up on chem in may. Maybe we will get lucky this time and won't have to have chemo anymore. How's it going with you?


#33

hi

really this is very hard time, but i suggest you to take the treatment as early as possible, but as per my opinion is that only 1 treatment that is Chemo Therapy is best solution so far.....


#34

tnx, but is it a pill, and now hows ur hasband, can u send the the pet report if u dont mind, n can u tell me the doctor's detail, so that i can ask him about the dossage.....


#35

Synovial Sarcoma likes to travel to the lungs. If your PET scan shows negative for metastasis, then I would think about amputation. If the PET scan shows positive for metastasis, then think about going the chemo direction.


#36

I'm facing a similar decision right now Shannon, only my synovial sarcoma is in my left sinus cavity above my eye and it has grown down into my nasal canals and up through the bone towards my brain (there is a membrane fortunately between the tumor and the brain still). I just underwent 25 rounds of radiation and my surgery will be in June. I have two surgeons that will perform the surngery - a neuro surgeon and an Ears Nose Throat surgeon. One of the surgeons wants to remove everything that has touched the tumor - this includes my eye and the skin around it. I'm for sure going to lose the top of my nose (which includes sense of smell). The ENT surgeon feels that to leave my eye puts me at risk for the sarcoma to return. His exact words were "do you want to be alive with one eye or dead with two?" The neuro surgeon feels that removing the muscle beside the eye is enough - my left eye won't track properly but I'll still have my eye and the skin around my eye. I would love to keep my eye and the skin around my eye - essentially to still look like me and not look freaky. But I really don't want this cancer to ever come back. I have an 11 year old son that needs me. I lost a husband to cancer 4 years ago. I'm not going anywhere! I haven't come to a conclusion yet but I know I'm leaning towards sucking up the loss of my eye for his sake.


#37

Hi Joes mum, sorry I'm just getting back to you now
We live in Northern Ireland and Matthew was the first case of ss they had seen and didnt know how to treat it, at first they were just going to amputate, they then got in touch with a hospital in Birmingham, England.We travelled over and he had a lift flap (limb salvage) with clear margins he was in surgery for 10hrs but he recovered really well and was up walking about 5dys after surgery,on returning home to Northern Ireland he then started his chemo, didnt get on so well with that, no complications but very, very sick and all the usual that goes along with chemo.

Our mantra at home was positive,mental attitude, we never let Matthew see us upset and we carried on as normal as we could and after Matthews treatment finished(october 31) he was back playing football mid November. Matthew is a typical grumpy, moody 14yr old and we love it, I know I personally let him away with things that maybe I shouldnt, but I cant be mad at him for very long, we dont know whats going to happen from scan to scan so we try to make the most of life and pray that this is the last we see of cancer, wishful thinking but its what keeps us going.

would love to hear a little about Joe and how he's handling things.x
denise clerkin said:

Hi Joes Mum,

My son was diagnosed with ss on his foot and we went with surgery with clear margins and then chemo, doxorubicin and ifosomide, that was 2 and 1/2 yrs ago and to date our scans are still showing no evidence of disease, I was very interested to know what side effects your son has had with the same chemo? how long ago was it from he was diagnosed?

JOE'S MOM said:

My son was dx with synovial sarcoma when he was 18..we did the chemo and rad and surgery route. But if I would have known what he would have faced later on I think we would have really thought about amputation. He was right handed and only 18 at the time and the tumor was on the right forearm. He goes to Hillman Cancer Center in Shadyside. His surgeon was Dr McGough and his cancer dr is Dr Tawbi. Who do you see? Would like to hear from you. Take care and if you need anything just let me know.


#38

We have been dealing with cancer with Joe since he was 12 he had hodgskin's lymphoma we have been done with that since 2004. Now we are dealing with this cancer since 2009. I am amazed how well he has handled this. He does not let it bother him he is so much stronger than I am. He has always been this way since he has gotten cancer.


#39

Did yu get a reply from me? I’m new at this and not sure I did it right? Wanda from Mississippi


#40

Did you post your reply here Wanda?

Wanda said:

Did yu get a reply from me? I'm new at this and not sure I did it right? Wanda from Mississippi