Synovial Sarcoma - Online Support Group

Son's scans came back..... chemo (doxorubicin) didn't work :-(

Scans came back, tumors in his lungs have grown, some new ones including one on his liver.... Dr has offered to try Ifosfamide/mesna now ... Anyone else have gone through this regimen in this order?

He asked about Votrient but was told that he should try this chemo first while he is strong enough to do it...

Also, we knew that he couldn't do the cannabis oil with the doxorubicin because of interaction and toxicity, I can't find any information about Ifosfamide and toxicity ... anyone know?

This is so heart breaking! I hate this disease and what it's doing to our family!!!

He is still feeling fairly well considering, but for how long? The side effect of this new chemo are pretty scary... how do you measure quantity over quality???

I am at a loss for answers and want to research but I'm not finding much any more. The trials are also a maybe it might work, and very costly as we are in Canada, it's like playing russian roulette... Again looking for some hope...

My son had ifosfamide toxicity during the 3rd day of his 2nd round. It was scary but they were able to avoid it happening again by also giving him extra fluids, sodium bicarbonate and methylene blue.

Synovial sarcoma tends to be sensitive to ifosfamide. Quality of life under this chemo is a little bit like a roller coaster. You feel miserable 3 weeks out of 4 but that 4th week can be quite enjoyable. The goal is not so much to prolong a miserable life but rather to buy time with the hope that better options will become available. It's a lottery and won't work for everybody but if you don't play, you don't win :-( Is it worth giving it a try? Up to your son to decide...

With synovial sarcoma both ifosfamide and doxorubicin should be taken together that’s the norm. Now I heard of new treatments in China for killing cancer please research that as well

Elodie, they will be doing the chemo every 21 days… infusions for 3 days in a row, 8 in hospital each day. 6 treatments, with scans after 3 treatments to see if working. That’s what his Dr told him… is there different protocols then?


don't panic yet. There are still some options left. But first of all why didn't he get both ifosfamide and doxorubicin at the same time? Ask your docter that as it is in general the standard first line chemo. Ifosfamide is still an option now so do it. (PS Mesna had nothing to do with the cancer treatment that's just to protect your kidney's). I had after the combination theraphy doxo/ifosfamide trabectidine (aka yondelis) was very succesfull for me. (look in my topic). After that you can try dacarbizini/gemcitabine did't wrok for me but ok for some ppl it works. Then I got an ifosfamide (alone) rechallenge stabilezed everything except in my abdomen so stopped that. Votrient didn't work for me and anyway this is the last medication you should take. I'm starting tomorrow with a trail..

Yes there are different protocols for ifosfamide. The first time I had it in 2003, it was given over 7 days, the second time (in 2007) it was given over 9 days. I've seen on pubmed that it can be given over 14 days:

My oncologist gives it outpatient which implies that his patients take a bag of chemo home (infusion overnight). This is uncommon. Most oncologists prefer keeping their patients in the hospital (for better monitoring?). That may be why they prefer infusing their patients for a shorter period? I have the feeling the protocol used may make a big difference. Unfortunately, I haven't been able to find any study that compares the different protocols :-(

Eagle said:

Elodie, they will be doing the chemo every 21 days... infusions for 3 days in a row, 8 in hospital each day. 6 treatments, with scans after 3 treatments to see if working. That's what his Dr told him... is there different protocols then?

I’m actually doing Ifex right now over four days and taking the doxorubicin home overnight for three. Just curious, Where did you hear about doxorubicin and cannabis interaction?

Thank you everyone!

Thanks Elodie for the information... so hard to comprehend all this!!! :(

Blue Llama,

We did lots of research and talked to the Drs. about taking the cannabis oil. It doesn't interact negatively with all chemo, but with some it makes the chemo more toxic, doxorubicin is one of them. The oil also can lower your platelet levels, as does chemo, so you can be at higher risks of bleeding out. From my research it can also diminish the potency of some other chemos so you don't get the full effects. It's a really fine line and needs to be researched carefully. My son was going to start the oil right away and was not informed of any of this when he inquired at a legal clinic.... so be aware and do your research. You have to be your own advocate and be able to make your own decisions based on sound information.

So my take on it is look things up, research, research, research, and to talk to your doctor and let him/her know if you are going to use cannabis oil while doing chemotherapy as it could have major effects on the outcome of your treatment and your health. We are talking about taking cannabis oil here, not smoking cannabis/pot which is different.

I also asked here on this site and was given some feedback in the late fall. Here is some of it:

"Be aware that cannabinoids can interact with conventional chemotherapy agents, this may lead to an increase of the chemo in the human system causing the patient harm through toxic levels of the chemo. Research further. Doxirubicin and Votrient are both increased in the human system when cannabis oil is taken oraly (I can not find any evidence about transdermal interactions)"

"My wife uses Cannabinoid extract. Don't smoke it!!!

There is loads of great in formation out there here are some links (great videos) (Manuel Guzman, Spanish Dr studies cannabinoids and cancer) (A great book on integrative oncology with a chapter on cannabinoids) an interesting paper on the psychoactive effects of cannabis."

Hope this help Blue Llama. Good luck with your treatments. Sending healing prayers and energy your way!

Unfortunately we haven't been able to find anything on interaction with cannabis oil and ifosfamide.... so that's why I was asking hoping that someone would know, like last time... will keep searching.
My son will be talking to his Dr sometimes this week too. He seems to be leaning towards doing the new chemo treatments while he is still healthy and strong enough to do it. The final decision will be made this week......
Please send prayers and support our way for strength and courage! Thank you xoxo

Well, our son has done one round of Ifosfamide and is doing a second one this week... so far doing ok with it. Will do a third at the end of the month and then will have tests and scans to see if working or not. He is staying positive and trying to enjoy life in between treatments as much as he can :-) He is so brave and an inspiration to us all... Prayers for a positive outcome would be appreciated. Thank you!

Good luck to him! Keep us posted!

Eagle said:

Well, our son has done one round of Ifosfamide and is doing a second one this week... so far doing ok with it. Will do a third at the end of the month and then will have tests and scans to see if working or not. He is staying positive and trying to enjoy life in between treatments as much as he can :-) He is so brave and an inspiration to us all... Prayers for a positive outcome would be appreciated. Thank you!

well… we are now at a crossroad again…
the chemo stopped working, Matt ended up in hospital with a fever and a cold, was released after 3 days with high dose antibiotics, and then found out a week later that he caught cdifficile while in hospital. He just finished antibiotics for that… can’t catch a break!!!
The scans show the 2 biggest tumors are 4.5 cm and by the airway and pulmonary artery… he is coughing up blood now, short of breath and has some pain. He tires more quickly but still is able to enjoy life as he is very stoic and positive for his family.

The next step is radiation on these 2 bigger tumors and then Votrient 2 weeks after last radiation treatment. Here in Canada votrient has to be approved to be prescribed as it is considered a trial drug??? not sure if it’s like that everywhere??? and then if approved it has to be put through their extended medical for coverage which we hope won’t be a problem…

He was told that this is the last treatment available to him … Please tell me there is more out there! Are we to believe this is it??? He is now at the end of the journey and we have to resign … if so be honest and help me understand what to expect, if not what else could we ask for?

I am scared and angry… I hate this disease and what it is doing to my son and our family!!! I feel alone and need some support from people who get it and have been through it… Thank you

Is this you who posted in SmartPatient as well? I just replied something there thinking the patient may be a child but I think your son is an adult, right? Besides votrient, there is yondelis (trabectedin) but probably votrient is more likely to be active. It does seem to work for more synovial sarcoma patients although not for everybody. Where is your son being treated? I am guessing they do not have clinical trials to offer there?

I wonder if this trial could give him more options:

Elodie, yes my son is an adult, 32 yrs old, and I did post in Smart Patient as well. Thank you for your information. He is being treated in Alberta Canada. No trials available there no. He will start radiations on the 2 bigger tumors in a couple days for 10 days in the hope to stop them from growing and then start Votrient beginning of November if all goes well.
This is all very scary for him and all of us…

Easier said than done but try not to let fear and anxiety spoil your lives. Luck will determine the outcome and there’s nothing you can do about it, except appreciate every day your son is still alive and make the best of it.
The treatment plan does make sense to me. Good luck to him!

Matt started radiations yesterday. He has been in a lot of pain, coughing a lot of blood and not feeling well at all. He had a slight fever. They did xrays, blood work and a bunch of tests… and ordered a CT for tomorrow. Things don’t look good. Looks like tumor(s) might have invaded blood vessel(s)? I didn’t really understand it all… he was upset on the phone and said it wasn’t good news. Will wait for results, hopefully tomorrow, and make plans to travel as soon as we can. Me, his dad, sister and nephew all live 1200+ miles away. We were going to go first of November but now he seems to have a sense of urgency to have us come sooner… such a scary and unfair journey for him and the family!

We really don’t want to give up hope that the radiations will help but also understand it enough that it scares us a lot… Please send prayers :heart:

This does sound scary. Jump on the plane and do whatever you can to be at his side in this difficult time. It’s the biggest help you can provide. Hopefully, it’s just a bad “storm” and things will start getting better soon. Sending my prayers! Hugs!

So we got news and some relief that the tumors are not invading the blood vessels as the Dr thought. He has fluid in the plural lining and pneumonia which she said is probably what was/is causing all the pain… one tumor has grown and the other shrunk a little… she couldn’t explain why? We are relieved that the news is the best of 2 evils. He is on antibiotics, home rest and will continue with radiations next week. He is also being retested for cdiff because of reoccurring symptoms… poor him, he’s such a strong man, keeping on keeping on and trying to stay positive :heart: We will talk as a family and decide what to do this weekend as far as travel plans… Matt says he’s fine and doesn’t need us right now but we also want to see him … so hard place to be at… do we wait till November as planned or do we go sooner in case??? If finances weren’t an issue it would be so easier to come and go, but we don’t have that previledge…
Thank you for your prayers :heart::heart::heart:

Another solution is having part of the family go now and the other part go in November. This way he is getting support now and later and the time you each spend with him is more dedicated and intimate…
Unfortunately there is no way to predict what will happen so it’s difficult to plan accordingly. Just follow your heart…