Hi this is my first post but im not sure if I’m posting correctly?
Family member was diagnosed with synovial sarcoma of chest wall - around first and second rib up to the clavicle. Tumour was 6cm x 4cm approx. Needed to shrink to make operable so had 4 rounds MAID along with radiotherapy. It worked in shrinking tumour and was removed with clear margins on July this year - operation was major requiring clavicle to be broken and top 2 ribs to be removed along with tumour, they also needed to deflate left lung
Had a 6 week break then had 5th MAID chaemo along with a first ever UTI which required 12 days hospitalization and 4 weeks antibiotics. During this 5th chaemo her bloods were all over the place requiring platlets and bloods transfusions.
Finally we were so excited to be having 6th and final 3 days of chaemo this week ending today. However last night and this morning she started having shortness of breath and found out she’d gained 3.3 kilos in 2 days. Oncologist ordered chest CT in middle of todays chaemo which showed pleaural effussion ( same side as deflated lung and timour). She said she thought may be caused by the chaemo treatment or bugs, when i asked how sure she was that it wasn’t mets she said 95% but what does everyone else think? Could this still be caused as after effect of operation in July?
I have more question but think o better stop for now!
Hi this is my first post but im not sure if I’m posting correctly?
Forgot to mention she saw lung surgeon for post op appointment 2 weeks ago at which time a chest xray showed pleaural effussion that she had at time of operation had cleared.
May be her surgery wound was not fully healed and since chemo causes platelet count to plummet, her wound reopened and her pleural effusion is just blood accumulating?
How is her kidney function? Is her weight gain all explained by her pleural effusion?
Thanks for reply Elodie!
When they did chest CT this morning nothing was noted about any probs with surgery wound so im guessing that was fine.
I just got home from the hospital and 1100mls has drained out and is straw colour - i think thats all ther is. Her tummy is still bloated with fluid and even her fingers were puffy.
Kidney function im not sure about but i know its been okay up to now. She has had a horrible time with chaemo throughout - neatrapenia 1st two chaemos and low platlets with each charmo. Then the very long UTI. Chaemo has been reduced a bit with each cycle. Onc seemed to think she’s been overloaded with fluids and chaemo. So don’t know if it could be acculmative effect??
Rougjly 12/7 - operating pleural effusion (lung deflated)
10/ 8 - UTI , chest xray found op pleaural effussion resolved but some effusion at bottom.
30/8 - post op lung surgeon , chest xray clear no effussion.
Now 2 weeks later - 1000mls effussion.
Also i read somewhere very rare to have mets at pleura??
I had PE after my first round of aim. I had 650 cc’s of fluid drained. I’m with your oncologist. It’s unlikely they are mets if the primary was shrinking. (Not impossible but unlikely)
Thanks for your message Wsp!
I hope so. What was determined to be the cause of your PE?
Inflamation from the chemo.
Thanks again Wsp.
I hope you’re doing well since your treatment?
Ive found out in the last 7 months what a terrible disease this is and the suffering involved.
I’m really sorry to hear that. Unfortunately I have learned the same thing over the last 22 months. Two weeks ago I had my second thoracotomy in 16 months.
The surgery is by far the worst part of the treatment. I had 7 rounds of aim followed by 35 rounds of proton therapy. I had clear margins and the tumor shrunk from 5.75cm to 1.5cm prior to surgery. Then 6 months later I was diagnosed with a 7cm tumor also in the left chest wall. I’ve been on votrient for 3 months and had another 25 rounds of proton therapy prior to surgery. I will likely be on votrient for the next year if all things go well.
But everyone is different. Some have few treatments and are cured, while others go through incredibly aggressive treatments and die. It really is a lottery in that respect. I hope this works for you.
Was your sarcoma on your chest wall in your lung?
Yes in my research ive noticed that too re varying outcomes regardless of size and site . Is Votrient a newish chaemotherapy drug? Do you take it IV or tablet form? Is the idea with Votrient to shrink new tumour and operate? What about side effects - god i hope it’s not as bad as AIM?
I’m guessing youve looked into immunotherapy? I’ve done so much research and read so much that I’ll have to start writing it all down - bad memory and i get terminology confused all the time haha - immuno, checkpoint inhibitors,PD1, vaccines Etc, etc .
My primary was attached to my diaphragm and lower left lung. The first procedure involved taking parts of both. The second procedure was the top of the left lung and left chest muscle.
The votrient is oral. You get to keep what hair aim didn’t destroy but it turns white. It’s more tolerable than aim but it wears on you. Many have strange issues. Heart, eyes, etc… Both of my pupils shrank and never went back to normal. So I have blurry tunnel vision. I’ve been off it for two weeks. I stopped three days before surgery because it stops wound healing.
But I’m grateful to be alive. A local friend diagnosed with chest wall SS died two days ago. It was especially tough because we were the same age, same cancer, same cancer location, diagnosed within 6 months of each other and being treated by the same doctor.
So sorry to hear about your friends passing it must be just awful, it really seems to be so unpredictable. From what I’ve read i think it makes somewhat of a difference if you have Bisaphic or Monosaphic and if it’s SSX1 or SSX2 fusion type? And of course nothing we can do about that. It’s a problem also that research on each type is so conflicting but im gathering that SSX1 type is less favourable. My family members is biphasic SSX1. Have you found out if you have NY-ESO 1? We dont know if she has and dont know how we find out and how they test for it so I’ll have to look into it as it appears some ok sounding clinical trials are available. Unfortunately we are in Australia and from what i can see most clinical trials are in USA & Europe - typical! I couldnt think of anywhere better to live than here but right now rather be in US! Have you read book by Rene & Andrew Chee? I found it very inspiring.
Thoroctomy is horrendous isnt it , it really smacks you for a six. You must still be in quite a bit of pain? Did they manage to remove all of the tumour? So you’ll keep taking Votrient for now?
So the plan prior to surgery was to take votrient for up to s year after surgery. My tumor was pretty big and they weren’t sure they could get all of it. The plan might change since my surgeon successfully removed it all.
Yes, the surgery is a nightmare. I’ve had several other types of surgeries and just one thoracotomy is was worse than all of them combined. Quite honestly I wasn’t fully recovered before I had my second one and that was over a year later…
It does seem like there are more options in the U.S. I’m having my tumor that was removed during surgery tested now. I do know I was mono but I don’t know the SSX type. 80-90% of Synovial are nyeso1 positive which is great. The HLA marker is the problem. I saw you found is was 40% but It seems like most don’t qualify. (I guess that makes sense. 40% is less than half.) The tests will show the ssx and also if there are any other options to fight this disease. Any proteins, mutations etc…
How are you doing? Did you get results for your tumor ssx type and any further options for treatment - immunotherapy? ?
Sorry haven’t responded earlier been busy supporting family member through final treatments of chaemo - so glad that horrible hell is over!
I’m starting her on high omega 3/low omega 6 diet and I’ve been looking at options should lung mets develop - cryoablation and immunotherapy look good to me if we can someone access it. Prob would need to sell the house to fund but we do what weneed to do hey.
I’m hanging in there. This second thoracotomy has been pretty rough, much worse than the first.
My first test from Foundation One was unable to help because the tumor sample tested was dead. They are now sending more sample and we’re hoping this tissue is viable. Then I should know the fusion type and whether or not I have a target approach to go after.
Yes #2 fusion type is better than #1 or #4 types and monphasic is better than biphasic or non differentiated.
Other factors are size of tumor, location, age of patient, sex of patient. With the location and size being the most important.
I hope you don’t have to sell your house. The stress of doing that may make things worse. I’m really sorry to hear of that possibility. Hopefully it won’t come to that.
So your doctors didn’t send a tumour sample prior to be tested? I’d imagine some of the tumour must be viable since as you said it was large - how long before you find out? Will you then look at a clinical trials if nyeso is present? Looks like the odds are quite high that it will be!
Are you still on votrient? You must be feeling pretty worn out and i guess it’s important to get your strength back.
If i have to sell house it’s okay it is what it is. I just want to feel that I’ve done everything in my powers to look for a solution so no matter what happens I’ll know I’ve tried everything humanly possible.
Does make me mad though knowing that a life can depend on a persons ability to pay for treatment - actually i find it disgusting. At least i have an asset to sell . It’s not what life should depend on. Oh well I’ll help fight this battle for now but in the future I’ll put all my efforts to help find a solution. That’s me off my soapbox now haha.