Trabectedin

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

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

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

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

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!

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

Hi and thanks so much for your reply.  Apologies that it has taken me so long to come back to you but I've been in Cambridge for the past three days for my chemo. 

So why three days?  Well, Cambridge is quite a long way from where we live on the North Norfolk Coast.  We travel down by train one afternoon, I have my bloods and see the oncologist in the morning, chemo suite in the afternoon for my pump being fitted and the various bits and pieces given beforehand, then train home the next day and our local small hospital disconnects the pump late afternoon.

So far so good with how I'm feeling and the results were not too bad.  Most of my tumours are stable (I'm a 4b and have plenty of tumours!).  Just one has grown 1cm so they are now deciding what to do about it - either wait and see until I have my next scan in December or give me some radiotherapy on it now.  My oncologist is going to have a chat with someone in radiology and tell me what they decide when I go for my next appointment in October.

Good to hear you are coping well with Trabectedin.  It will be interesting to hear from your oncologist what ongoing treatment is planned for you. 

I am currently having Trabectedin once every four weeks (three weekly for the first three sessions and then four weekly - that was the plan rather than them having to change it because I was having problems).  How often are your cycles and are you too having a 24 hour pump?

Hope you are feeling well at the moment and long may it continue!

Thank you for your note. Each cycles sounds like quite an adventure!

Our circumstances sound quite similar. Like you I have a number of residual tumours that are stable with one exception. Is is that has triggered this latest round of chemo

It’s interesting to hear that your team is contemplating radiotherapy in relation to your problematic tumour. I’ll raise that as a possibility when I see my oncologist tomorrow

I am indeed having a 24 hour pump. I get connected at the clinic in London and get disconnected locally 

im finding that the Trabectedin makes you feel quite queasy in the morning. Have you had a similar experience?

All the best

Good evening

We do indeed seem to have similar circumstances.  However, my tumours have only shown stability at the latest scan (with the exception of the one dodgy tumour).  Since I commenced Trabectedin my three and six month scans showed a very minimal increase in size of the other tumours on each occasion - this was the first time stability was mentioned.  I've been told it is my decision whether to have radiotherapy at the moment but I need a further discussion with my oncologist prior to making a decision - I see him again in mid October.

For how many days after your infusion do you suffer morning queasiness?  I vary from infusion to infusion.  This time I've had a queasy few days (although nothing too awful) but last month I was pretty good.  I take ondansetron for the first few days although try avoid more than three days because of the constipation.  My oncologist also recommended (and prescribed) omeprazole, one to be taken every morning, to help my stomach.  If I'm having a bad month I take this for the first few days and it does help.

If you are suffering with queasiness for more than a few days it would definitely be worth discussing this with your oncologist.  After my first infusion I had a really bad stomach for most of the three weeks.  My doctor decreased my dose of Trabectedin by just the smallest amount and it made a huge difference.

I hope all goes well with your appointment tomorrow and will be interested to know what is decided about your tumour.

Kindest regards