Synovial Sarcoma - Online Support Group

Are there any other young children out there?


So glad to hear all the positive news & that Tristan is able to just be a kid during some of this time. Stay strong and know that we are thinking of him and the rest of your family too as it is hard for everyone!

(don't know if I mentioned Supersibs (http://supersibs.org/) was a great find for my daughter when my son was quite ill)


Oh, we just applied for Supersibs! And a number of other things, too. The Child Life Specialist, and the social worker at Kaiser have both been very helpful!


Good to hear, it is all important!


I'm glad to hear he is tolerating the chemo well. My son fared pretty well all things considered. His main issue was fatigue and nausea. He was lucky enough not to have issues with mouth sores, which I understand causes a lot of issues for people.

I assume you're doing inpatient for chemo? At Sloan Kettering they run it more like a day hospital (unless they are running a fever or something else is an issue), so we went home every night. For the last couple of rounds he did we were at the University of Iowa hospital and he stayed inpatient.

I wish I had some advice to offer but I'm sure you're getting good care. I think there is a slower recovery time on subsequent rounds, particularly in terms of the recovery of counts.

Keep in touch and please let me know if you need any input, advice or support.


Regarding pain from injections, somebody mentioned the following tool for pain relief:


Here is a video from France that demonstrates the use of hypnosis to reduce pain when they do bone marrow aspiration on leukemia pediatric patients:


The idea is to distract the patient by telling engaging stories at the moment of the procedure...


Thanks, everyone! Brian, Tristan is inpatient for rounds 1 and 2 and 5 and 6 of chemo, because the doxorubicin is a 48 hour continuous and apparently highly toxic drip (they wouldn't let Tristan go for a walk to the game room or anything, because of that, even though he felt up for it on one of the days). Rounds 3 and 4 will be outpatient because the ifo drug is three one hour drips, so he'll just have a pump with the saline/dextrose hydrating IV to go home with each day. Doing just ifo for those rounds, because he's getting the radiation on his arm during that time, and doxo isn't compatible with radiation. It's amazing all this stuff you learn during this. :-)

And thanks, Elodie, for the links! I'm happy to report that the injections have gone way better with the aid of a simple gel ice pack. We just ice it before hand, directly on the skin now, since he was icing over his shirt before and it wasn't getting his skin cold enough. And we let the neupogen come more to room temperature before injecting it. The combination has made it go much more easily. Tristan isn't afraid of injections and always watches them and never flinches, so we haven't had a problem with him getting them for a few years now. That's a lucky thing for us!

Tristan just started losing his hair yesterday, which was about two weeks after his first round of chemo. We were wondering when that would happen. We had fun with it. He's in high spirits. He has his new fedora hat now to wear if he wants, but he may just go without it (with sunscreen in place of course on that pale noggin). And he has a new rash guard to wear when swimming, since he's a little self conscious about his port showing. Life is good! Going to the water park today. Hope you are all well!


Hello. I am 14 years old, I have ss in my right ankle, and they had thought it spread to my lungs, but after a recent biopsy they found that it hasn't. Now I'm faced with the decision of amputation. I am really scared about making this decision. And I'm not very sure of what options I have other than that. I want to live a long life, no matter what, but I also want to be sure I made the right decision. I really hope your son is doing well. I've been told so many times that since I'm young, I can fight it better, which I honestly don't find to be accurate, but fingers crossed. If it's true, your son will be a survivor in no time. Love and prayer goes to you and your family. Take care <3


Thanks, Sarah! Yes, when they throw amputation into the decision process, it is a scary thing. From what I hear, even amputation does not guarantee that it won't come back in the lymph nodes or lungs, so I'm very happy that our doctors and second opinion doctors did not consider that for long. Our son is doing very well so far with chemotherapy. It is strange to be going through it when we have no proof that he has any cancer in his body right now, but it feels good to be doing whatever we can to make sure it doesn't come back. Even radiation on his arm, which he will also be starting right after he's done with this next dose of chemo. I am sure you and your doctors will be discussing what is best for your situation. Tristan, too, had a nodule in his lungs, which they removed...and it was not cancerous. But we had that scare a year ago, when all of this was first going on. Listen to all the opinions and ask all the questions you need to, so that you feel good about whatever the action plan will be. Take care of yourself and stay strong, Sarah!


Just wanted to post an update for anyone who is interested. Tristan just completed his second round of chemo this week. They did a great job of controlling his nausea this time. The doctors also put him on a Thiamine drip in order to prevent any possible reactions to the ifosfamide. The doctor explained that it's pretty rare, but some people can react the second or third time around. While she was talking to me, Tristan was literally running across the long play room and skidding with this slippers, being a totally normal healthy kid, and I was thinking, "Yeah, yeah, whatever...it won't happen to Tristan." Well, the unexpected happened. Just minutes after his one hour ifosfamide drip ended Tristan started complaining of feeling dizzy and nauseous. Then he suddenly fell asleep (this was around midnight). The nurse was literally standing there about to dose him with some additional anti-nausea med, when he suddenly started having a seizure. Luckily, that was the only one he had. We moved over to PICU and they got some methalyne blue in him finally. Methalyne blue helps prevent and mitigate effects of seizures, among other things. So, after some discussion in the morning, it was decided Tristan will get methalyne blue right before the ifosfamide each time, and that he will get a slower drip over two hours instead of one. That did the trick! And here we thought the doxorubicin was the drug that he had been having trouble with last time. I think he was already sensitive to the ifosfamide and was reacting to that. The rest of his chemo went really well this time. No ill effects from the seizure, and nausea was hardly present with the continuous anti-nausea med. He ate pretty well and didn't lose the weight this time. Radiation on his arm starts a week from Monday. The next two rounds of chemo will be just the ifosfamide, since doxorubicin isn't compatible with radiation. Therefore, those next two rounds will be outpatient, or at least we think so. They're going to do that slower drip and methalyne blue, and then will want to watch for signs of reactions. Those will be long visits, if they are outpatient. Has anyone else out there had reactions to ifosfamide? I guess anything from disorientation to actual seizures can happen. Leave it to us to have the rare things happen. Tristan, thankfully, doesn't remember a thing. And he is totally happy and positive. He just hates being hooked up to stuff, which doesn't allow him to move around or to sleep comfortably. And he's doing great...back to normal, with pretty normal eating and energy levels. Thank goodness he was so healthy going in. Hope you are all well!!!


I knew of a patient who had neurological issues with ifosfamide and was given methylene blue. Her doctors decided to discontinue the drug because they felt the side effects were too harsh and they had a clinical trial to offer instead. She passed away though... I hope the issue gets under control in Tristan's case. Good luck!


I am so sorry he went through that. Thank goodness it was handled quickly and well. Sending you lots of love and strength from here.


My husband is an adult SS survivor but we heard a story about a young kid about 12 had it in his foot. amputated it and did the chemo.radiation route and that was over 12 years ago and he is still cancer free... everyone is different, and some get it even with the amputation... its hard to know what to do but just have hope knowing that there are kids who survive!!!


Researchers at Stanford University School of Medicine have found a new technique to allow radiation free detection of tumors:



My 14 year old daughter got diagnosed with SS in her right ankle. The tumor was removed without any prior radiation or biopsy (dr. screwed up). Now she is getting radiation before a second surgery to remove whatever is left with margin. I am very concerned that the tumor may have spread to lungs. She shows several 2-3mm nodules on the lungs on the CT scan so we are getting another CT scan to see if they grow. The Dr. did not recommend biopsy because says the lesions are small. They did not recommend we start chemo yet until more scans but I am very concerned. Did anyone on this thread ever deal with small nodules on the lungs and what was done about it? On the other thread they mention very large nodules. But nothing when they are small.



I would absolutely insist that they biopsy those nodules. My husband also presented with a small nodules in October, 2015. Multiple doctors told us they were too small to biopsy. Upon a repeat scan in January, they had grown and there were more. Dr still was not concerned about them. How can that be? In February, 2016, my husband started coughing up blood. Repeat scans showed nodules had grown considerably and spread as well as other areas of his body . We were sent to Beth Israel Deaconess in Boston. We learned that the doctors can biopsy tiny spots-even the size of a pin if they are concerned. No one ever did biopsy my husband’s lungs. I know it can be tricky to do, but it can be done. I don’t want to scare you, but I would insist. From my own personal experience, this type of cancer can spread rapidly. It also lead to one tension pneumothorax as well as two Pneumothoraxes in my husband. I urge you to pursue this. Best wishes for you and your family.


Hello, I had a SS removed in July (still in recovery) and previous scans showed no mets but recent ones showed a 4 mm nodule. They are retesting next week (8weeks from last) to see if it had grown. My doctor said he had a patient once whose lungs showed covered in nodules and they were all ready to start chemo but the next scan lungs were clear. The patient was fighting a cold. He said these things come and go in all people which is why they monitor instead of biopsy right away. Of course I’m still very nervous.


Thank you very much. How big were your husband nodules?
I have not slept since I got the CT Scan results 4 weeks ago. My Dr. said they were too small for Biopsy to wait for the second scan which I have scheduled for September. I am very concerned because my daughter has never been sick so having 7-8 small 2-3mm nodules is very scary. I feel like she needs to go into Chemo right away but we still have the surgery coming up and the Dr. told me that is better to start chemo after the surgery.


Thank you Amy! I hope your nodule goes away. My daughter has 8 2-3mm in size. You have a single one which is common. I had my own CT scan done and I had one 3 mm as well. The radiologist mentioned that is relatively common to see 1 or 2 but I am very scared because my daughter has never been sick until now and she showed with 8 of them.



Have the nodules only shown up on one scan? If so, it does seem reasonable to repeat the scan in September. If they have grown or there are more, I would insist on biopsy or futher exploration.

I know that we all could potentially be showing nodules in our lungs especially if we had a history of pneumonia, bronchitis, etc. Your daughter’s nodules could simply be related to that which would be amazing news!

I would have to go back my file of medical records to look at the size of my husband’s nodules. I can do that tonight if you would like to know. I believe they were very small when they were first discovered.

I don’t want to scare you, so try not to worry! I do, in fact, think that many people end up with good news and the nodules are nothing. The scan next month is going to reveal so much more for you. Hard to believe that September is almost here!


It’s quite usual to wait and redo a scan rather than biopsy lung nodules. 2-3mm is very small. I am not even sure all machines would pick up such tiny nodules. The benefit of waiting is that if the nodules are malignant, they can assess how aggressive they are which can help guide treatment decisions. Also they don’t need to mess up with her lungs this way. Biopsy are invasive procedures…
In the case of Zamwizzy’s husband, the doctors should have reacted at the second scan. I wonder why they didn’t.
It’s also better to fix the ankle before you find out about the nodules. Treatment options may be more limited if your daughter gets a local recurrence and metastases in the lungs at the same time.
Good luck to her!