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Synovial Sarcoma survivors wanted! Would love to hear stories!

scarlettaguilar
Posts: 1
Joined: Apr 2009

Hello Survivors!
My name is Scarlett, I am 19 years old and I live in San Diego, California. This is a long one, but I would really appreciate you reading it!

Here is some background...last February I was diagnosed with synovial sarcoma. It was in my left forearm. I don't remember the approx. dimensions, but I remember them saying it was considered "small." I had a chest ct, bone scan, and pet scan which all showed no evidence of metastasis. I started with radiation to help shrink the tumor. After that finished, I had a surgery to remove the tumor as well as a sentinel node biopsy. The node biopsy was clean and the surgery was successful, my doctor was able to spare a lot of the function of my arm and thankfully, it functions very well despite the fact.

The frustrating part came after surgery. My doctors were all on the fence about whether or not I needed chemo. It took a lot of thought, discussion, and research, but ultimately I made the decision to do chemo. I thought that I would feel better with the notion that I did everything I could to fight it. I had six treatments of Adriamyacin and Ifosfomide cocktails. I would be hospitalized from Thursday to Saturday getting treatment, beginning treatment on thursday and ending treatment on friday evening. I really don't remember much of the treatment, The drugs made me pretty delusional.

Cut to now, April 2009. I am doing well, feeling good and taking care of myself. I have had an MRI and a Chest CT and they both have shown "no evidence of recurrence." I have been given a pretty good prognosis and my test results have worked out in my benefit. However, I still can't really kick the negative thoughts. I get so worried sometimes that I can't sleep or that I have paranoid feelings. Going to the doctor makes me so anxious that I feel sick to my stomach. I have had two friends pass away in the last 6 months (one to metastatic osteosarcoma, one to breast cancer) and I feel like all that surrounds me is these dismal stories.

I have been seeing a therapist and started taking an anti-anxiety medication to help combat the feelings. But its so intense sometimes and I feel like I really don't have many people to turn to...especially my friends. Its really hard to find a 19 year old that can relate to what I've been through. I have a really supportive team behind me but its tough to find somebody that can actually relate.

I would love to hear some encouraging words and survival stories. Also I would like to hear stories about cancer-survivor related anxiety and how you overcame it. Its a tough road and I know that the feelings will never completely go away, but all stories are welcome. Thank you so much and you all are so strong!

survivor7
Posts: 6
Joined: Dec 2005

Get to the Gerson Institute in San Diego. Also this Dr. in France has a new drug that has killed Synovial in mice.God Bless You

Dear Dr. Fukukawa:
Thank you so much for your prompt response. I am so happy to hear that the new trials will begin in July. I am sure you will have great success with this Frizzle gene and I am very excited for the future cure of sarcomas. I would like my son to be considered for this trial. Presently we are considering laser surgery in Germany by Dr. Rolle. We are hoping to buy him some time until the cure comes on the market. My prayers will be with you and your research. I would be very interested to hear more about the trials and the needed qualifying requirements to enter into the trial. God bless you and Merry Christmas!

Sincerely,

Ana Wolber
Happynina7@hotmail.com

--------------------------------------------------------------------------------
Subject:
Date: Wed, 22 Dec 2010 14:25:28 +0900
From: c-fukukawa@oncotherapy.co.jp
To: happynina7@hotmail.com
CC: hhanaoka@med.gunma-u.ac.jp

Diego. Also cure coming in July in FRance.

terryp6590
Posts: 1
Joined: Apr 2011

My name is terry.
I have had synnovial sarcoma for 4 years. I got it when I was 16 but was told it was something else. Fours years later a doctor in gainsville finale told me what I had. It was 14cm long and all they could do at the time was amputate my leg below the knee.

I will be starting chemo april 12. I will be in the hospital for 6 days getting the chemo 5 of those days. At the time it looke like I have had the cancer to long in my body, because it has spread through my blood stream and is in my lungs. My doctors are worries it will turn into lukemea.

But I am not writting this to be discouraging. I am 20 years old and have had a great life with no regrets. God has been good to me and I have no reason to complain. All I can say is stay strong never give up. You never know what can happen.

So long and farwell.

obie1203
Posts: 8
Joined: Mar 2011

Keep the faith and stay strong. My thoughts and prayers are with you

campsie46
Posts: 6
Joined: Jun 2012

Hi Terry

Are you ok xxxxxxxxxxxx

pebs
Posts: 2
Joined: Mar 2011

Hi,

I am a 37 year old female and I was diagnosed with synovial sarcoma of the left forearm 5 days before Xmas 2010. I had the tumour for 23 years and it had always stayed the same size, however the pain it caused if I even tapped it was unbearable and it used to give "electric shock" type pain. It had been diagnosed as many benign tumours such as neuroma, ganglion, glomas tumour and lypoma despite never having a biopsy done. I was told not to have it removed as it was so close to nerves that I would lose use of my arm/hand. I just took the doctors words for it.......

3 years ago despite it still not growing it became more painful and I decided to take the risks involved with surgery. It was removed and the pathology report diagnosed as a benign schwannoma. 6 months post surgery it returned and continued to grow, this time the symptoms were "different" I had involuntary twitches in my arm and the tumour was more firm. I had what was thought to be a returning schwannoma removed in Dec 2010 and then as I said recieved the bad news that it was a grade 2 synovial sarcoma. I have since had further surgery to obtain a negative margin and have just completed 30 sessions of radiotherapy. I had a full body C.T scan which showed my organs were clear and 2 subsequent chest x rays have also been clear. I see my oncologist in June for my radiotherapy follow up and all I can do now is hope that is the end of it and it does not appear again.

Best wishes to all who are goiing through the same as me.

Mom2will
Posts: 1
Joined: Jul 2012

My son's symptoms are identical to pebs. Ironically we found out a week before Christmas 2006. My son had been experiencing a pain in his left wrist off an on for a year prior. It was not a constant pain, but when he moved his hand a certain way or would bump it, he would latterly fall to the ground in pain. He was 6 years old at the time. We spent over a year with an incompetent dr. Who told us it was a sprain, tendinitis, and then he went as far as to say that sometimes are children have pains we can't explain. I had from the beginning asked if we could do a MRI. He would not because of my sons age. He said that children can't sit still for MRI's and therefore he would have to be put under and that was just too much. He did order a bone scan and X-rays . Nothing. We eventually switched dr's and on the first visit said please give our son an MRI . They did,BTW, he was awake and stayed perfectly still. The results were that he had a tiny ganglion cyst next to his alnur nerve. Wh found a hand surgeon and had it removed. A week later we heard what every parent fears , that our little boy had a very rare cancer called Synovial sarcoma. My husband and I where devastated, but I needed to get busy and find an oncologist quickly. As I said before, it was just before Christmas and I wanted only the best Dr. For my child! I contacted Johns Hopkins and was able to get in with them four days before Christmas.
To make a very long story short, my son went into surgery to check the margins for any sign of cancer cells because when he had surgery before, the dr. Did not know he was removing cancer. A few weeks later we got a call that the margins were clear. We were so happy and thought we could just move on with just check ups every few months. Well, that was not to be. Three months later at his first rutine MRI post surgery, we were told that there was a reacurance. My son soon started 5 1/2 weeks of daily radiation. Then he would have another surgery to remove half his left hand. They had to remove the alnur nerve to make sure they got all the cancer. The alnur nerve controls the movement of your pinky and ring finger, so they took those fingers so they would not flop around.
That was September 7, 2007. He has been clear ever since. We currently are going twice a year for check on his hand and once a year chest X-ray. After his check in September, we will only go once a year for the next 5 years.
As for the Aniety, I do well on a day to day basis, but I get quesey right before our appointments until we get the results from the dr. My son is an amazing kid. He plays football and lacrosse and is really quite good! He recently took up golf and is becoming passionate about that too. There is nothing he can't do. He live his life to the fullest and is such an inspiration to everyone that knows him.

little sister
Posts: 1
Joined: Apr 2011

My sister was the 3rd report case of Synovial Sarcoma when she was 11 years old. This was in 1974. My sister underwent radiation and chemotherapy and an amputation of her right hand just below the elbow.

I know that it is scary to go through the diagnosis and discuss the treatment options. But know from the sister of a survivor, I thank god every day that they did everything they could to save my sister. The treatment was much more archaic then than it is now. They have found so many more advancements in the treatment of this disease. The impact on the body is less severe now than it was then. She has struggled with the side effects of her treatment for years. She was right handed so she had to learn to do everything she normally did with her left. The chemotherapy attacked her immune system which leaves her susceptible to every virus', shingles, and to heal. They told her that the chemo caused too much damage to her reproductive organs so she would likely never have children. She did have a few miscarrages, but she had two successful pregnancies and she has two healthy children who are now in their 20's.

God bless each of you as you fight your fight and count down to your 5 year mark. Know that we are all pulling for you. Surround yourself with love and laughter.

juice_box
Posts: 1
Joined: Jul 2011

Hi Scarlett,
I am 25 years old and was diagnosed with synovial sarcoma on my right femur, on December 21, 2010. My husband and I had just been married less than two months before and Christmas was three days away. They weren't sure what it was but just determined from the biopsy that it needed to be removed. Jan 5th 2011 I had the mass removed along with a 16 cm of my femur and a full knee replacement. It was two weeks after surgery that I found out I needed chemotherapy. But before I could start we had to do In Vitro Fertilization. Chemo finally started February 11th. I had doxorubicin and ifosfamide. I had 4 rounds the last was Easter weekend. I'm all done now and my hair is just starting to grow back. The problem now is getting my leg to function properly again. The chemo set back my healing and I'm having I hard time bending my leg past 90 degrees. I get frustrated sometimes. But I just look at how far I've come. I spent 5 months on crutches and now I can walk on my own. It's still going to take some time before I am completely normal but I know I'll get there. I'm just thankful that I'm still here. And thats what keeps me going. I can overlook my hair loss my scars and my limp because I know that I survived, and I want to make my life the best it can be now. I know its hard to find people to relate too and for me a lot of friends just disappeared while I was undergoing chemo. Whether it was because they were afraid of bothering me or just didn't know what to say, I have no clue. But my husband and I find we have to try harder now, let people know we are available and we can get together otherwise we get overlooked and aren't included in plans. Anyway, I guess thats all I have to say except for stay positive! And if you need some encouragement read The Secret by Rhonda Byrne. It helped me a lot. Thanks for sharing your story!

Truusje
Posts: 1
Joined: Dec 2011

Hi scarlett

My name is Truusje, I'm from south africa. I also have a long story! Ill try to make its short! I'm actually celebrating my 5 year cancer free this year! When I was 21 I was diagnosed with a synovial sarcoma, I think in the worst place ever! My neck, inbetween my eosophogus and thrachea. At first the doc in my home town thought it was my thyriod, but they wanted me to see a specialist and after months of struggling to breath and eat properly I had my first ct scan and biopsy. Whitch came with devastating news! Worst of all was that I was all alone in that hospital bed when the doc broke the news! My mom and fiance went home already. The rest all happened so fast! Its like my life changes in seconds! The next day I had to get a tupe put in my thrachea, coz the doc was scared the tumour will grow so fast and sufficate me. I stayed in hospital for long, atleast it felt so! My doc wanted to figure out what will be the best route to take, coz the type of cancer I had was very rare. it was decided that I go for radiation and chemo first and we hope and pray that I wouldn't need surgery. Before I could go home I needed a feeding tube put in my tummy incase the radition would damage my throat so much that I can't eat. I must say that was so uncomfotrable! Living with that tube stiking out of my tummy for months! I had radiation for about 2 weeks when the tumor shrunk down so much that my doc decided I dint need chemo! Wow how amazing was that! So the tube in my trachea came out! Yippy! You don't know how nice that was! To beable to talk with out closing the whole in the trachea! No more need to take it out every day to clean, how painful that was! After 6 weeks of radiation and living away from home, I went for another ct scan. My tumor was still there! That was the worst feeling in the world! I really beleived it was gone! On 12 fed 2007 I went for surgery, almost everything in my neck was removed, they had to rebuid me a swollow pype out of my intestines and now I have a permanent trachea whole moulded in my neck from the skin on my chest. Worst of all my voice box was removed! So I have been silence for 4 years almost 5. My doc has tried voice valves with me but becoz my swollow pype isn't strong enough it jut doesn't work. It was a long and hard few years at a time I was in hospital every week to have my swollow pype stretched becoz I was unable to eat or drink. I made it throught! I have a lovely husband and family who understand me, not all the time but they learn. And last year we had our first child! How amazing is that! My boy means the world to me! I do get rough times! Its difficult to be silence in a world where everyone has a certain way of comumunicating. Where people are scared of me. Maybe becoz of the way I look or bcoz I'm just scared they won't understand me. Its difficult , but I thank God everyday for what I have!

Husband73
Posts: 1
Joined: Dec 2011

Hi scarlett. My wife was diagnosed with a synovial sarcoma in her Rt elbow in law school in 1994 when she was 21. She was living in ottawa, ontario at the time and was sent to the Sarcoma group at the Mt Sinai hosital in Toronto. She had Rads before and after surgery where they were able to resect the tumor with minimal margins and reconstructt her elbow. She did not receive chemotherapy at the time. She finished law school, met me, got married and had 2 kids. She went to all of her f/u religiously and after 10 years they said that she was "cured". Then 15 years after her initial Dx. while she was pregnant with our 3rd daughter, she developed pain and weakness in her Rt hand at 8mo's gestation. Her ObGyne and family Dr said it was probably carpal tunnel. Then 1 week after delivery, she noticed that her forearm was swollen and tender and went back to her original surgeon who immediatly Dx a local recurrence 15 years later that was confirmed on Bx!. The tumor was big - 7 cm, too big for resection. In order to avoid an above elbow amputation of her dominant arm, they recommended Chemo to try and shrink the tumor to more manageable size. At the time the Drs could not say if the chemo would be helpful in preventing late metastatic disease. She went on 5 cycles of Ifos and Adriamycin which shrunk the tumor to about 1/2 its original size. Chemo was rough - 2 episodes of febrile neutropenia that required hospitalization. She went for a big surgery to remove the tumor and save her arm. Unfortunately the surgeons ran into insufficient blood supply to her hand post op, and 4 operations later she was left with an above elbow amputation. She has had vigilant surveilance with regular CT chests since her surgery and unfortunately the just found a 1cm metastases in her Left lung. the met is solitary and looks easily resectable, so she will be meeting the thoracic surgeon next week.

My wife has been living with SS for nearly 18 years, she hasn't given up hope, and we haven't given up on life! We have 3 girls 10,8 and 3yrs. We try to make the most out of every day. it took a lot of counselling therapy for my wife and me as well as medications to deal with her original recurrence. I had to deal with some PTSD related symptoms from my wife's time in hospital and we have managed to stay happily married. I would strongly recommend counselling for both patients and loved ones having difficulty coping with anxiety and depression. Mindfulness relaxation really helped me - there is a book call "full catastrophe living" by John Kabat Zinn. The most important think to understand about the stress and anxiety is that it does not go away by merely wishing it to. It takes, counselling, therapy, physical exercise, a close network of family and friends to lean on, as well as antidepressant meds. Despite the bad news with the new lung met, my wife and I can still sleep ok most nights, enjoy time with family, friends and each other.

The good news is that SS is one of the few types of sarcomas that are fairly chemosensitive to conventional chemotherapy. Most SS tumors do shrink with chemo. The bad news is that there is no good evidence that ifosfamide based chemo does anything to prevent late metastatic disease, and the cure rate (if there is such a thing) is far too low with current therapies in metastatic disease. So unless it is part of a clinical trial, routine chemo for resectable disease with negative margins is not indicated. It is unfortunate that 50% of soft tissue sarcoma patients are still given routine chemo for resectable disease when for the last 30 years there has been no good evidence to show that it prevents or delays late metastases. Maybe things will change with newer drugs and biological agents that offer a more targeted therapy. Being treated in a large tertiary center that has a multidisciplinary team treating sarcomas is very important for such a rare disease.

There is life after cancer. My wife finished law school, met me, got married, had a successful career, finished a graduate degree in law, had 3 beautiful daughters. Losing her arm was horrible, but it didn't change our relationship or who she is as a person.

markesha03
Posts: 1
Joined: Feb 2012

Hello. My name is Jamie Fuller. I have a 13 year old daugher who had a synovial sarcoma behind her knee. She found it in May of 2011 during track practice. We got our Port in June of 2011,and started Chemo. She had 4 treatments of Ifosfamide and Adriamycin, and 25 radiation treatments. She did amazingly well. In November of 2011 we had the tumor removed, the tumor was essentially dead, with negative margins. The chemo made my daughter very very sick. Her therapies were monthly,for three inpatient days. It was really hard trying to decide if we were going to chemo after such a successful surgery, but I did decide to go ahead with the chemo despite how well the surgery was. My daughter's last 2 treatments were very hard on her, and her last treatment left her with an ANC of "0", and very low platelets. She has had Neulasta after each chemo treatment, but for some reason, her white blood cells are not responding as well as before. At any rate, Im glad to have run across this website. I will be sharing it with my daughter, and hopefully she will be open to sharing her experiences with all of you guys!! Blessing to everyone!! :)

Brucie
Posts: 3
Joined: Feb 2012

Hi Scarlett

I actually have just registered today with this site just as a result of reading your article. I have had a long experience with cancer. I have had cancer I suppose twice but I survived a synovial sarcoma many years ago. I have put my experience with cancer in my profile so if your interested in my experience you can read it.

I hope you are still well and if you want to know more about my feelings and how I dealt with cancer I would only be too glad to share them with you.

I must say the very fact your on this site and have stirred up the conversation is a brilliant way of helping to deal with the issues surrounding cancer.

Emeraldisle72
Posts: 1
Joined: Mar 2012

I have read jsut about all of your comments/posts. And just wanted to share my husband's journey as his case is different from the previous ones I read.

Our journey started in December of 2010. I took him to the ER at our local hospital because he was sounding hoarse and had a lump on the left side of his neck. He was diagnosed with "pharangytis". We were told to let it runs it course over 7-10 days. When he wasn't any better, we went to a different ER which referred us to and ENT. Biopsies revealed what we all thought was Papilarry Thyroid Cancer. When he had his 1st of 2 surgeries to remove his thyroid & parathyroid gland in Feb. 2011, the surgeon found "cancer" in his esphogus. Biopsies of that area revealed Synovial Cell Sarcoma. He had to have a complete removal of his esophogus, voice box and they had to reconstruct his esophogus by using his stomach. Surgery margins were clean. He underwent 6 weeks of radiation therapy. In Aug. 2011 we found that the Synovial Cell Sarcoma had spread to areas in his abdomen. He underwent 8 rounds of intense aggressive chemo therapy that took its toll on him. Adryamycin/Ifex/Mesna cocktails every 21 days and 4 day hospital stays for 5 months. The tumors shrunk, but not comepletely. He is now considered in remission, but I am terrified still that it may return since this is such a rare form of cancer and the area of his body in which it "surfaced". We are optimiistic though.

pebs
Posts: 2
Joined: Mar 2011

I have obtained some details of clinical trials that are currently recruiting in Lyon, France.

I am currently 15 months in remission but I researched alternative treatments in case of recurrence and came across the details.

I thought I should post it as it may offer some hope to sufferers who have been diagnosed with terminal synovial sarcoma.

Best Wishes.

http://clinicaltrials.gov/ct2/show/NCT01469975?term=synovial+sarcoma&rank=11

campsie46
Posts: 6
Joined: Jun 2012

Hi Scarlett

I have survived 10 years without reoccurenceI am now 45 was diagnosed with tumor in elbow at 34. They took it away and not worried until now. I have a swelling st back of knee hoping just through excessive driving that I do with my job. Your fab hope you are well and I will let you know my outcome as I am doing a lot of research and found good outcomes.

Kxxxx

1jackson
Posts: 1
Joined: Jul 2012

Hi, Scarlett:
I was diagnosed when I was 18. The synovial sarcoma was on my left knee, and was mistakenly identified as a cyst, which I asked to be removed because it was bothering me. I ended up going back to college thinking I was all set, only to be called by mother to tell me what I had. I left school early that year, had preliminary radiation, a larger surgery to make sure all was removed, and then an additional summer's worth of radiation. I'm now 47 and doing fine.

I have participated in the Long-Term Follow-up study, which has been collecting data on cancer survivors for more than 20 years now. I started going to a survivorship clinic at Dana Farber in Boston about 6 years ago - I now am supposed to be seen every two years or so. The focus is on what my treatment means for my future - the radiation I had, the other tests (CT Scans, bone scans, x-rays, etc.) I have had since, and what is known about side effects of those treatments years later.

I am married and have 2 children who are now 9 and 11. I did get a genetic test (p53) just to make sure there wasn't a hereditary thing going on, but it all came back negative. I also saw a nutritionist at Dana Farber who recommended healthy foods and lifestyle. I agree with others that individual results will vary, but much more is known now than when I was first diagnosed in 1984. There is also a LOT more support - physically and mentally - than when I was going through it. Continue to take advantage of it!

Good luck. Hope you're doing well.

leelovesmoos
Posts: 1
Joined: Oct 2012

I first was diagnosed 33 years ago when i was 7. I had a recurrence at 24 years old, both treated with surgery . radiation suggested after 2nd occurrence. Went for 1 radiation treatment and haven't doctored for it since. I will be 40 this Wednesday. best wishes!

ILOVETHON
Posts: 3
Joined: Jan 2013

Hi Scarlett! My name is Dominique and I'm from Pennsylvania. I am 18 and was diagnosed with synovial sarcoma when I was 13. I had a grapefriut sized tumor in my hip/groin and had chemo. radiation, a 14 1/2 hour resection and partial hip and femur replacement surgery and more chemo. I know this probabaly will just make you more paranoid but then I relapsed 3 times in 2 different places. I had 3 lung surgeries, the last one was an inferior lobectomy (removal of lower right lung lobe). Then It came back again behind my esophagus, right beside my heart. But the good news is that I am now 4 months and 10 days NED (No Evidence of Disease)! I try not to be really paranoid and just not think about the scary things, but its hard sometimes. It helps for me to just scream and cry and get things out every once in a while. But the best way is to not think about it or just think about the good things that have come from this. I am glad to have gotten cancer because of all the experiances and amazing new friends I have made through all this. Even though I have had cancer 4 times in just 4 years, I am confident that I will be ok. After all I beat it 4 times too. So don't worry about what could happen in the future, just say I beat you once and if I have to I can do it again and then forget about it. And have fun. :) P.S. you can email me at beardedhamsterdogy@gmail.com if you want. I've only ever met one other person with synovial sarcoma and he's 10.

abigailsmith
Posts: 1
Joined: Jan 2013

I’ve been battling Synovial Cell Sarcoma this past year after finding a tumor under my arm in January, 2012. I’ve had times that feel like I’m on a non-stop roller coaster of emotions, as most, if not all of you have experienced in your battles. But throughout this whole experience God’s faithfulness and peace have been so real to me. I’m not giving up on this fight and this short interview explains a bit more about what has happened.

http://vimeo.com/smithpixels/abigail

http://blog.abigailsmithphotography.com/2013/01/terminal-cancer-wasnt-in-my-plans/

sriaadhi
Posts: 2
Joined: Oct 2012

Hi all,

My name is Srini my uncle name is GVMM NAGA RAJU who is suffering with the Cancer deseage called Synovial Sarchoma which primary tumor is localised/located at left lung plura. A brief summary about the Patient's deseage history.

1. In March 2011 Patient suffered with chest pain and back pain and undergone with some testes reports attached and named as before operation.

2. Used some Ayurvedic Treatment from April-2011-October 2011 from your institute( Tumer spreads and as per you suggesions we ent for surgery)

2. In Novener 2011 Patient undergone with surgery and  reports attached and named as post operation discharge summary and also complete Bisopy report attached(we went for Critical surgery and resected with clear margins)

3.In Decmber 2011 to June 2012 Patient undergone  with Chemo therophy (6 cycles ) and report named as post operation and post chemo discharge sumary

4.In recent 1st Otober 2012 Patient suffereing with again chest pain and breathihng difficulties and went to Hospital and diagnosed as the tumor re-occured.Report attached as pots operation and post checmo CT scan after 4 months.

5. Medical oncology doctors team suggested for CT scan , We got CT Scan and found mutiple deposits in and re-occurance of the tumerin the Left luncg uplobe and plueara.

6. We went for 2nd openion who done the surgery last year, and surgen suggested for us to go with Chemo therophy/pallivated chemotherophy no use of surgery as this is reoccurance and multiple deposits.

7. Again we went to Medical oncology doctor and hey found new approved medicine called Pazopanib 800mg /400mg. we can test this for few weeks  on prior to move on to pallivated chemothearphy.

8. We started the Pazopnaib 800 mg for 1st week of November and my uncle(GVMMJN) not able to loerate the side effectes and got sick. we stopped the pazopanib 800 mg for next 10 days and continued with 400 mg for next 2weeks and when ever untolarable we are giving the 1-10 days break and continue with the same 400 mg per day.

9. We went for CT scan test 3rd week of Jan 2013 and surprising "existing 2 tumers in the left lunng got shrunk(reduced 20-40%) and remianinjg two tumers same size and stable. apart from that a new tumer came in beside to those tumer.

10. As per Medical oncology doctore new arraaving of the new tumer is a part of this synovial sarchoma and how ever the result is Pazopanib is working and got good ressults.

11. Medical Oncology Doctor suggsted us to continue with 400 mg per day and till next Scan which is scheduled in the month of April(next 3months after the curret Scan).

Currently my uncle (GMMMJNR) is tolarable with 400 mg per day per 2 weeks and 1 week break and again 2 weeks. hopefully the way the medicine and deit should manage him to to prevent him from any Sick.

If any one going for Pazopanib treatment please take the suugeessions fom the concern Medical oncology Doctor on priscription and dosage depends on tolarability of the patient.

All the best and good luck to every one and keep posting to get immunised our strength to get dying of the cacner and living of the humans.All the best

akshaygupta
Posts: 3
Joined: Mar 2013

I've gone through the story...Really its a toughest fight with Synovial Sarcoma.

Could you please suggest me where are you taking the treatment for your Uncle.

All the best.

Akshay

9916706594

akshaygupta
Posts: 3
Joined: Mar 2013

I've gone through the story...Really its a toughest fight with Synovial Sarcoma.

Could you please suggest me where are you taking the treatment for your Uncle.

All the best.

Akshay

9916706594

sriaadhi
Posts: 2
Joined: Oct 2012

HI,

Curerntly my uncle ongoing treatment with Pazopanib medicine as suggested by NIMS Hyderabad Oncology,

Treatmet is bit difficult how ever bit better than the Regular chemo , Managing side effectes bit tuffest job and my uncle still capable to handle onlky 400mg per day for -3-4 weeks and then 1 week break and then continues, Tumer agrresive bit downgraded ands till increasing the size of the tumer and getting pains on surrounding liung areas and sholders.

As per Oncology still continue with Pazopanib medicine.

You can check with your nearest onclogy and get decide to be hav e a good medicine , normally Synovial sarcoma bit aggressive and it grew very fast and spreads easy via blood vessals.

Srini

relick
Posts: 1
Joined: Feb 2013

Hi Survivors

my name is Don,I'm a  survivor of synovial sarcoma which was located in my colon which apparently is rare.I'm from canada and surgery was done in Ottawa Ontario.These are the best surgeon in Canada.1 of them deal with colon and the other with the sarcoma.They told me that I was the second they have done and i went there the other day and they told me they did a third one.I was diagnosed in Feb 2005.When they found the cancer immidelately  the hospital in ottawa was contacted by  my wife .She did all the work  and she  bi-pass the Doctor that found the tumor in Kapuskasing in my own town.That was on a friday i was told that I had cancer.On the next thursday I was in Ottawa which is 10hrs from where I live.Immediately they put me to ease and told me there is no chemo involved because it's so rare.But I got all the best service in the world with these groups of doctors and don't forget their great secretairies that treats you like one of there own.Right now and then I was encourage.I spent around 6 mths back and forth from my town to this nice city.There remove a section of my colon and 1 doctor sais this might be the a secondary cancer which could come from somewhere else.1 doctor replied No and it's now been 7yrs cancer free and feel great.Thanks to the medicare we have in Canada.They monitor my brain and lungs yearly which scares me because  it's every year instead of every months.I lost both my parents  and they were 54yrs each of them due to cancer.So if you have 1 or more cancer patient in your family you need to get check ASAP because it's in your genetics.Thanks again for your stories it make me feel strong.

 

Regards,

Don

akshaygupta
Posts: 3
Joined: Mar 2013

Hi All,

3 years ago my brother was diagnosed for a mass of size 8x5x3 mm in his right axilla and the surgeon removed.Biopsy reports of the mass shown no sign of malignancy.But Now in feb 2013 my brother started complaining of pain in his right axilla while trying to move his arm above head.MRI reports suggests that there is a mass regrown at the same sight,biopsy was taken and tested and the surgical oncologist at Rajeev Gandhi hospital,New Delhi,India is suggesting that it is a "BIPHASIC TUMOR FAVOURING SYNOVIAL SARCOMA".Since then its an emotional trauma for my entire family.

Now we have refered to ALL India Institue of Medical science.And the surgery date is 22nd April 2013should we wait so long..

please suggest.

Regards.

 

 

t123
Posts: 25
Joined: Feb 2013

I have angiosarcoma and have been in treatment since February 2013. Feel free to email me if you have any questions . I will give you the little hints and clues that may make the treatment easier. Ive gone through the chemo, radiation and surgery.

gaby9's picture
gaby9
Posts: 2
Joined: Oct 2013

Hello, 

My name is Gabriela, I am 23 years old and was recently diagnosed with synovial sarcoma.  In December of 2012 I remember telling my family I felt a really strange feeling, when ever I would lay on my left side I would hear a sound like popping bubbles (that's the only way I can explain it) and a weird vibration on the left side of my tummy. I went to the doctor and he gave me a prescription for anti inflammatory pills, he also recommended I do an x ray to see if there was anything else going on. I never went to get that x ray because I thought to myself "Why would I possibly need an x ray". I went back for a follow up and told him I was feeling sharp chest pains and he advised I get that chest x ray.  I finally decided to go to the hospital and A few minutes after my x ray the doctor came out and told me my left lung had completely collapsed. I was then hospitalized for 5 days with a collapsed lung (pneumothorax). During my hospital stay I had numerous tests done (including scans) and the doctors did tell me that I had some old scar tissue near the left side of my lung, but that it was NOTHING to worry about.  

About two weeks later I went back to the doctor for a follow up visit where I had another chest x ray done. To my surprised my left lung was completely collapsed AGAIN. I was at a loss for words. After much deliberation I decided to go ahead and have surgery to have my lung stapled. 

I remember waking up after surgery and over hearing the doctor telling my sister they had found a tumor barely attached to the bottom left lung, but he went ahead and removed the tumor. Two weeks later I found out that the 4.3 centermeter tumor was synovial sarcoma and extremely rare. Although the tumor was removed with clear margins, the doctor first recommended I do radiation because of the aggressiveness of the cancer,but After speaking with other doctors he recommended I do 6 rounds of chemo therapy IFEX/adriamycin and mesna and radiation after. I went ahead and started my chemo April 11th and finished my last round July 28th. I started radiation August 26th and will finally be done this upcoming week. 

Never in a million years did I imagine I would be diagnosed at such a young age with such a nasty aggressive cancer. Although there are days I can't help but wonder if it'll return, I know I did all I could to prevent it. During my chemo I did not stop going to work because all my little kiddies (first graders) helped me keep my mind off everything that was going on. My job was a big part of what helped me keep sane. That and my wonderful family who stood throughout it all. I never let the cancer get the best of me and always kept a smile on my face even though there were days I felt I didn't want to keep going. I hope this is some way helps someone else. 

JennSS
Posts: 3
Joined: Jul 2014

Hello Scarlett: Our minds can work in our benefit or we can

make it destroy us. It is all up to us. You can read my story

to know my synovial sarcoma story.

My advice to you is to have faith and when you get negative thoughts on your mind, switch them 

with positive thoughts. Also try to keep yourself occupied

with hobbies that you like. Something that works for me is 

listening to classical music to relax. If you have a religion,

prayer is very helpful. We need to practice our faith

and use our powerful mind to sent positive things to our bodies.

Keep a positive mind and remember that you are not alone.

 

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