Soft tissue sarcomas

A place for anyone affected by any type of soft tissue sarcoma to support one another, ask questions, and share experiences.

Trabectedin

NorfolkLass
Posted by

Hi Everyone

I have endometrial sarcoma stage 4B and am currently being treated at Addenbrookes (Cambridge) with Trabectedin.  Do any of you have experience of this type of chemo?  If so, it would be helpful to hear your experience and whether it has been successful for you.

Norfolk Lass

Norfolk Lass
latchbrook
Posted by

Hi

I'm not a member of this group nor am I taking trabectedin but I did notice that your post had gone unanswered.

I typed 'trabectedin' into the search facility in this group and did find some previous posts that mentioned it but they are at least a year old so the people who posted them may no longer use this site. However, if you haven't already done so you could still do this and read these posts.

I have also found this information about trabectedin and created a link to it in case you haven't seen it yet.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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NorfolkLass
Posted by

Hi Latchbrook

Thanks so much for taking the time to reply.  I had already searched for Trabectedin and realised that the last posts were quite old so thought I would try asking in case anyone who is on it had not reported online.  Maybe it is a type of chemo not often used?

Kindest regards x

Norfolk Lass
latchbrook
Posted by

Hi

You could also post your question in 'ask a nurse' and one of the specialist nurses will get back to you in 2 working days. 

Sorry I can't link you to that at the moment, as I'm on my phone, but if you look at the top of the page you should see a heading titled 'ask an expert'. Click on that and you should see 'ask a nurse'.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

Simon-W
Posted by

Good evening Norfolk Lass

i’m a soft tissue sarcoma patient who has just started Trabectedin. I had a five month course of Dox and Ifos last year and when the disease needed further chemo I went onto Gem and Docetaxel in July. Those drugs have jut been stopped as they have proved to be ineffective hence the move to Trabectedin

i have only had one course so far and the principal side effect appears to be extreme fatigue/lethargy. For the first week after treatment I was extremely fatigued to the point where I could barely get going at all. That now seems to be improving a little day on day so hopefully the improvement will continue

Appetite and taste don’t seem to badly affected. Both have suffered quite badly when on my previous chemo

i’m due to have between 6 and 8 cycles of the drug depending on how I tolerate it

if you have any more questions just shout

NorfolkLass
Posted by

Hello Simon-W

Many thanks for replying to my message about Trabectedin.

I am pleased to hear that so far the side effects haven't been too bad for you, other than fatigue and lethargy.  I asked about other users not because I am about to commence a course but because I've now had nine cycles and wondered how others are coping with it!  I initially had a cycle every three weeks but after the first three this was changed to four weekly.  On the whole I tolerate it pretty well.  In the first week I have issues with taste in week one but then it disappears.  I also have some peripheral neuropathy in my hands and feet, but that was largely caused by previous chemo drugs.  I would agree with you that fatigue is by far the worst side effect and unfortunately I've found that gets worse with each cycle.  My solution is to fight it and just keep going!!

I was interested to hear that between six and eight cycles are planned for you.  I've been told I will be on Trabectedin for as long as it is working and my body can tolerate it.  This is because my sarcoma is stage 4B and incurable.  I had a scan last week and am keeping my fingers and toes crossed for next Tuesday, 17th when I see the oncologist.  I'm hoping for Trabectedin cycle 10!

Norfolk Lass
Simon-W
Posted by

Good morning and thank you for your message.

Well done to you for tolerating nine cycles so far. I hope you get the green light for number ten tomorrow

I have had the same experience with taste in week one. It certainly helps with coping that it doesn't stick around for too long as the chemo drugs I have had previously seem to destroy appetite and taste

Will your peripheral neuropathy clear over time? I experienced it for a short period when I was on Docetaxel but I wasn't on it long and the symptoms cleared pretty quickly once I stopped it

My diagnosis is the same as yours so it seems strange that our schedules are different. I shall quiz my oncologist next time I see her as I'm interested as to what she proposes once my proposed cycles come to an end

All the best