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Synovial Sarcoma - Online Support Group

Sarcome synovial in médiatin


#1
Hello,

I am french. One year ago, we discovered that my husband (68 years old) had a synovialosarcoma médiastinal and pleural around the right lung, The mass measured 15cm in its biggest length. The mass is inoperable because too much near the heart. In Marseille, my husband underwent two series of chemotherapies and 35 sessions of radiotherapy. The sessions ended in the end of November 2011. The scanner of the end of February 2012 showed that the mass was 9 cms and the oncologist decided to match nothing two months. The scanner of the biggining of may 2012 showed that the mass was 11 cms and the oncologist still decided to match nothing during two months. We wait for the next scanner of the beginning of july to know how will have moved the mass. My husband does not suffer, has good appetite but is very fast breathless dices that he makes something. I know that his case is rare, that is why I try to find a patient with the same kind of sarcoma and I saw that Nasheet has the same sarcoma.

I hope he will read my message.

#2

Hello my name is Loree, I am 50 years old and live in the states. I was diagnosed with synovial sarcoma 2 months ago where they found a tumor(mass) 10cm in size near my Right Lung. On May 11 I had surgery to remove the tumor and also had 1/3 of my right upper lobe of my lung removed, I am still in recovery and feeling pretty good . I have started radiation this week and feeling a little of the symptoms of fatigue. I am feeling good otherwise but this was a big surgery to have.

I read your message and i hope your husband will be able to have this removed because when i found out i had this it was also constricting certain things such as my esophaugus and it also started to wrap around a blood vessel to my heart which doctors said if it had wrapped it any tighter i would have gone into cardiac arrest.

I had great doctors here and they did a awesome job in removing this from me. I knew when i got diagnosed with this it was the first thing i thought of was please just take it out.

I pray for your husband and hope they will be able to remove it from him at some point., i hope this brings some hope to you .

Loree


#3

Thank you Loree. I hope you are well now and you can forget your sarcoma. My husband has great doctors specialist of sarcoma in a hospital of Marseille. They said they can't do surgery because of the position of the mass and because of the age of my husband. He often coughs and is very breathless but does not suffer.

Thank you for your prayers.

Mado


#4

I am sorry to hear your family is going thru this. It's not easy....My hubby is 39 and has been going through this since 2008. Started in his leg and now all in his lungs. Many in his lungs. He has been through so many chemo's. Hoping one will at leaset make him stable. His biggest one right now I believe is 9cm. It's been a journey. He also coughs a lot and gets out of breath easy. He lost his leg last year and has had a hard time trying to use a prosthetic.

I wish you the best of luck and lots of thoughts and prayers going your way!

Dora


#5

Dear Madobo and Loree,

It is very heartening to know that we are suffereing from exactly the same "beast".It becomes very big and is around lungs or mediastinum,it seems we have a pattern here.But I think once the tumour cells are in your blood they tend to attack the epithelial lining mostly found in Pleural cavity and mediastinum cavity,and they grow fast and big.Another pattern is they do not cause much pain.The pain is only due to "pressurizing" esophagus or lungs,and yes the heart wherein u feel breathless.Chemotherapy has little effect on tumours greater than 5 cm,so it is not a perfect solution,nor is radiation or surgery as I found the hard way.This is my mother's 4 recurrence of tumour

1.)In March 2009 a small cyst was found just outside lungs wall,this was removed surgically.The histo-pathology showed it as "mesothelioma" and bad for us no post operative localized radiation was done,as the doctors asked us to wait for a couple of months due to post operative recovery.

2.)Soon after she developed nodules in lungs and a very big mass in right lung.We went for needle biopsy and found it to be Synovial Sarcoma ( report said..monophasic synovial sarcoma the tumour cells expressed EMA, BCL-2, calponin and MIC-2.they are negative for CK and CD 34 .COMMENT-it is unsual for a synovial sarcoma to metastasis after a tumour free period of 24 years,this is nevertheless a synovial sarcoma ) .She took several cycles of various regimen of chemotherapy but to no avail,it kept growing,though not that fast.Finally lobectomy of right lower lobe of the lung was done successfully.Again due to weakness after such a major operation no post operative chemo or radiation was done.The resected tumour and lobe report was "Cellular spindle cell tumour showing ill defined whorling and many blood vessels.The adjoining lung is compressed and shows haemorrage.Immunohistochemistry awaited..."

3.)next time it came back in even a more ferrocious form,this time in mediastinum,replacing esophagus to one side and barely few cms from aorta.We again went into several rounds of chemotherapy but it kept growing.Finally due to closeness to heart we had to make a decision and surgery at that time was the only option.But no doctor was ready to operate her due to size almost 10x12x6 cms and closeness to vital organs.We took her to the new ultra modern state of the art facility in New Delhi,800 kms away from my home town.The doctors initially refused,but on our insitence they decided to have a panel and evaluate the case.Finally one Thoracic-Cardio specialist who spend almost 20 years in UK took up the case and decided to go for the surgery.Initially he said that he would open up and decided whether to go for full or partial removal.But somehow he managed to remove the whole thing in a marathon supra surgery lasting for 6.5 hours.After that my mother was in ICU for 5 days and seemed fine.On the 5th day she developed uneasyness and breathless ness,which increased rapidly.Finally she had to go on ventilator and sedation due to discomfort.A gram negative bacteria called acinetobacter was found in a culture three days later,but by that time her both lungs were totally choked.It took 11 days to control the infection.Doctors say her immune system was compromised by chemotherapy,but essentially this is hospital acquired and is found in almost all ICU around the globe.Anyways my mother took 2 and a half months to recover from this trauma and ICU.She developed neuropathy due to prolonged stay in ICU/ventilator/sedation and could not move her limbs.Three months of intesive physiotherapy and she is now moving back to normalcy again.Also she had acute nausea for two months and is now better.because of all this no proper nutrition could be given to her and she became very weak and skinny.

4.)So again we could give her post operative chemo or radiation,and our worst nightmare was not over yet.Last month we found that the tumour has come back again fourth time,even bigger.Now she has completed 3 weeks of radiation,doctor say the next CT scan or radiation can only resume after a month due to her frail condition.So now we are awaiting 15th July and will go for a scan as doctors say it takes a while for the affect of radiation and in anyway nothing can be done till that time.So before we start the next chemo or radiation we will take the CT again and decide.One oncologist has suggest to go for Yondelis as we have not tried that.We have tried all others.But I feel she is too frail to take on chemo now,Chemo is really worse than the disease I think.She does have palpation, breathlessness and cough on and off,we have an oxygen cylinder at home which comes in handy.She also has problem in swallowing sometimes.But no pain as such only discomfort due to these.

I have attached her last CT scan report.

So that is my story.I really do not know what to do next? Its been 3 and half years,initially she was very strong but now she is quite weak mainly due to chemo and ICU.We as everyone else are also trying all kinds of alternative therapies,none of which have worked so far.This time we are giving her tea made out of leaves and barks of Graviola,still waiting for a miracle cure.My mom is a fighter and we all are gearing up for another battle,everytime we find no light at the end of the tunnel,but somehow manage to get out of the tunnel.Lets see this time.I hope medical science catches up for a perfect understanding of this disease and finds a solution soon.I have heard of endostatin-gene therapy and all other therapies in a hospital in Beijing -China,but my mother has now refused to travel outside my hometown.She sometimes get tired of medication-chemo/steroids and side effects like nausea,but she comes back and gears up for another fight.

-Nasheet

79-IMG2.pdf (845 KB)

#6

Nasheet, there is a chemo therapy pill called votrient, that was just approved by the FDA in the US> My husband started it and has been doing well with it. No hairloss, no nausea or vomiting. He has his heart monitored and so far so good. Have to wait for another month or soto get another CT scan to see f his tumors which were very small in his lungs. I don't know if this would be available in your country or the costs but it has had good resultsin test subjects. Good luck and keeping everyone with this disease in our prayers.


#7

Dear Linda,
Many thanks for the info,will surely check it out.
-N


#8

We are going to see our oncolog next 11 july. We will see if he approuves Votrient for my husband. Thank you for the info. In France, when a person has a cancer, all medication is free for this disease.


#9

Oh wonderful, wishing you all the best.


#10

Dear Linda,

is there any combination of drugs with Votrient like Yondelis?Is radiation possible along with Votrient.What is the regimen with Votrient.This could immensely help us.I have enquired and us GSK has launched this drug in India as well,but not many Oncologists know the proper administration and combination,early days yet.I have been planning to pre-pone the scans,15th july is too late,considering the size and proximity to heart.She feels very breathless now if she does any exertion a bit.So I guess its pressurizing the heart.I am planning to see the doc tomorrow and request scans by the end of this month max.

Thanks for this new info,is a lifeline,hopefully.How are the trials on large SYN like 12cms or more ?But surely the smaller ones in the lungs would be cleared,so I am definitely going for it.

-N


#11

So far, they only completed trials for votrient (pazopanib) alone. The dose used was 800mg once daily orally:

http://clinicaltrials.gov/ct2/show/NCT00753688

And you can find the results of the trial here:

http://www.ncbi.nlm.nih.gov/pubmed/22595799

There are a few trials recruiting looking at combinations with other chemos:

http://clinicaltrials.gov/ct2/results?term=pazopanib+sarcoma&pg=1

I can't find any that combines votrient with radiation.


#12

My husband takes one pill a day, I really don't know more than that. Your doctor could contact the company that makes votrient if he doesn't know the answers. The rest he'd have to help you with. I can't believe they'd make you wait til july to get the scans done to see if it's grown and pressing on her heart. I'd think they'd get her in right away. And there is no guarantee that votrient will even work for her, my husband is a guinea pig right now in our area. If it works for him then the oncologist will be recommending it to others. But votrient can cause heart problems too. Bestof luck and prayers to you all.

Nasheet said:

Dear Linda,

is there any combination of drugs with Votrient like Yondelis?Is radiation possible along with Votrient.What is the regimen with Votrient.This could immensely help us.I have enquired and us GSK has launched this drug in India as well,but not many Oncologists know the proper administration and combination,early days yet.I have been planning to pre-pone the scans,15th july is too late,considering the size and proximity to heart.She feels very breathless now if she does any exertion a bit.So I guess its pressurizing the heart.I am planning to see the doc tomorrow and request scans by the end of this month max.

Thanks for this new info,is a lifeline,hopefully.How are the trials on large SYN like 12cms or more ?But surely the smaller ones in the lungs would be cleared,so I am definitely going for it.

-N


#13

...thanks..we are seeing a doctor..u r right....it is still a research drug as per representatives of GSK in our area...lets see..hope for the best...


#14

I don't know how the drugs would work on the large tumors, my husbands are only pen size. His first tumor was found in his left leg and knee joint in 2006, they removed the tumor and put in a large metal rod in his leg, but by 2009 the cancer had returned behind the knee, wish we hadn't gone for amputation though and just had removal of the small tumor and radiation, life has been hell for my husband and I since his amputation, and this past march after suffering for 4 years with thyroid cancer, had it removed. The dr.s just told me I had a nodule and I didn't feel the urgency from them to have it biopsied until I got so ill that everything I ate almost killed me. But that's another story. Good luck.


#15

UPDATE...after feeling breathless for over a week,finally mother was put on ventilator/life support yesterday,she could take Votrient for only 6 days,chances of her reviving back are slim.

N


#16

Nasheet, I don't know what to say but I hope your mother is not suffering :-(


#17

I am so sorry to hear your news. Praying for your family.


#18

I am sorry to hear about your mom, all our prayers are with you, I hope she doesn't suffer.


#19

Hello, There are at least 2 facilities in the US that offer proton beam radiation. Apparenty the advantage of this proton beam is that is it once it hits its target it stops which makes it safer then other radiation procedures. It is my understanding that it is especially effective for lung tumors because it does damage other tissue and heart muscle. The two centers in the US are MD Anderson in Houston, TX and the other is in Oklahoma City, Oklahoma. God Bless.