I'm currently 4 months into a clinical trial and have chemo 3 weeks on, 1 week off, plus the the trial drug. I've really struggled with the regime as I was unwell before I started chemo and I've been plagued with lots of other problems as well. I can have a maximum of 6 months of chemo which takes me up to the end of December but I'm not sure if I have the mental strength to continue chemo for that long as I'm so drained. Has anyone asked for a chemo break as I was thinking of asking if I could have a month off treatment during December and complete the final round in January. I don't want to come across as being irresponsible asking the question but I'm desperate for a break. Hope this post makes sense as I have terrible chemo brain today, Kerry
Am I being irresponsible asking this question - My Ovacome
Am I being irresponsible asking this question
it really isn’t an unreasonable request. I don’t know if it’s possible but it certainly isn’t irresponsible to ask the question.
Wishing you the very best
Alex x
Sorry to hear you're struggling with the chemo , I don't think it's irrisponsible at all , I think we all know when we've had enough, if a break is possible on a trial it may help you get to a place where you feel you can continue later. Do let us know . I too feel I can't do any more, I've only had one cycle of three but I've had enough. Sending you strength . Cheryl
Hi Cheryl, lovely to hear from you. I was wondering how you were as I know you were having chemo on Monday. I'm sorry you've had enough already but I totally get you. I'm going to speak to my onc next week to see about having a break. Hugs Kerry
Yes do ask Kerry , hopefully the answer will be yes and you can re- energise .
I’d try everything to stick with it. They have the regimen so it should work. Stay strong. 💪 just sleep to recover and ignore the Chemo brain! Xxx
I want to but I've barely had a day since June when I've felt well. The constant fatigue and other problems I've had have really dragged me down. I'll see what my Onc says.
I would definitely share how you are feeling with the team. The trial protocols may dictate the answer. The team may also be able to offer you other interventions to help support you. For example if you are flagging due to anaemia that is borderline needing intervention they may bring intervention forward which would give you some umph to help get you through the next few months .. so don’t ever feel bad asking a question they are there to support you ..
Thankyou, I suspect the trial protocol may dictate thenswer but I can but ask anyway.
I think you should ask your team and explain how you feel. Good luck
Thankyou, I'll talk to them next week.
it's definitely not irresponsible to ask, and it makes sense to let the team know how you're feeling. Just be prepared to hear the answer No, as they may think you really need to continue. We all feel at times that we can't go on, but believe it or not, we find that strength from somewhere. Sending hugs!
Thankyou, I'll ask the question and if the answer is no I'll just have to crack on with it.
your body. Your decisions. Do what is best for you hugs from
Thankyou.
hi Kerry. I’m on a clinical trial. All be it with tablets not chemo infusion.
You must discuss these feelings with your team. Speak to the trial team nurse and she will assist you.
I’ve had a couple of breaks in the last 9 months. Once so I could enjoy a holiday and others for my bloods.
Your quality of life is part of the trial.
Good luck
Thankyou, hopefully they will allow me a short break. It would be nice to feel a bit more normal over Xmas.
A break makes it feel more doable. I hope you get some support at your next appointment and something positive to look forward to.
I find that if you don’t mention anything they presume your doing ok. They may say let’s wait and see. but they will do there best I’m sure. X
Thankyou, I've got nothing to lose by asking
Hi Kerry, as the others have said I think you need to ask your team and see what they say? Not sure it they’d do it on a trial? I know you feel crap, but not long to go now? Maybe just resign yourself to another few weeks as you’re so close.
Good luck with whatever you decide xx
Thankyou, I can ask but if the answer is no, I'll have to hang on in there.
you can do this 💕 xx
Bless you Kerry your not being at all iresponsible in the least, ask you team lm sure they will come up with something for you. No doubt you won't be the first or last to ask, hopefully you can. To get your strength back. Love ❤ Big hugs for a positive outcome. SheilaFxxx
Thankyou, the last few months have been very hard on the whole family as I've been so unwell. Our youngest is jetting off to Australia for 6 months in Januaury so it would be nice if we could enjoy Christmas without my sitting around like a limp lettuce.
may I ask what trial you are on it seems very difficult with only one week off of chemo to recover. Bless you for sticking it out thus far! You are so close have they given you any results scans or the like?
Sending hugs and strength!!!
Debbie
Thankyou, it's the Aliftus Trial at the Royal Marsden. I've had 2 scans since starting it in July and I've had a good response to treatment so far.
Hi Kerry. It's so hard when you believe you have to be strong all of the time . I believe that it takes courage to make decisions either way, treatment or stop treatment. Asking for a break so that your body, mind & spirit are in a better state to deal with further treatment seems sensible. TELL them it's what you want. They may not agree butas said above, it's your body. Sending love & big hugs.xxxxx
Thankyou, I am incredibly grateful that I've been offered a place on the trial and they look after me so well at the RM that I don't like to complain but I need to at least ask the question.
Yes, be grateful but don't jeopardize your health because you "don't want to complain ". It's their job to find trials for us & they usually do it well but if you're struggling, they would want to know & they would want to do anything possible to have those trials go well. They are fighting for success, YOU are fighting for your LIFE. Which is more important?
Hi Kerry, it’s not irresponsible to ask at all and your team will want you to be honest about your side effects. Maybe you could discuss lengthening the cycle to give you a bit more recovery time in between.
My nurse changed my steroids for my last two cycles (more days on a reducing dose) and it helped immensely. Xx
Thankyou, I have had a dose reduction of chemo and steroids as they give me terrible acid reflux and really affect my mood. I've seen a slight improvement but I'm not sure it's enough.
I had a lovely meeting with the Trials Team including Dr Banerjee this morning and asked the "question" explaining my legs are so weak, I feel so drained and it's actually affecting me mentally as I struggle to leave the house and straight away they all understood. I said I was happy to complete cycle 5 which takes me to the end of November but she said "no let's put a hold on chemo after todays treatment as your legs are only going to get worse". She explained there is no magic number as to the number of treatments you have and I can always start chemo again at a later date. I'm due a scan in December so we can review then, Kerry
well done for asking it and great news with the answer. Hope you get to feel a bit more like you xx
Thankyou, the reason my legs are so weak is because I've developed neuropathy in them due to the treatment so I'm going to concentrate on building them back up. X
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