Cisplatin and gemcitabine side effects- any thoughts please?

[Lou53]

Hi everyone I have just had my first cisplatin and gemcitabine treatment and am hesitant about doing the next this Friday as the side effects have been awful. Nausea and the headache from hell so I didn't want to move. Ondansetron didn't help much and I'm wondering if anyone else has had these side effects on cisplatin and if you managed to get them resolved? Of course I will also speak to my oncologist but value any experiences you may share.

Thanks and good wishes to all of you.

Louise

[January-2016-UK]

Call your team, they can tweak your meds and stop your nausea. Don’t suffer. Are you drinking at least 1.5 litres if water? It might well help the headache. I had Cisplatin and Gemcitabine first dose last Tuesday and my second dose yesterday. Not nauseous. Different folks need different nausea meds for different chemo.

I had Ondansetron before the infusions now domperidone.

Good luck.

[Lou53 in reply to January-2016-UK]

Thanks I'm waiting for my team to call back. Drinking lots yes and will try to get different meds for the nausea. Will ask about domperidone.

Good luck with your course.

Louise

[Janet235 in reply to January-2016-UK]

How are you doing Helen? What timescale are you on with regards to this regime? I am really nervous about this one due to start ( after 2 delays) on 10 th October.

Janet x

[January-2016-UK in reply to Janet235]

Good luck for 10th Janet! Is it proposed you are to have just Cisplatin / Gem or are you joining the catchily named INCB0015-203 trial? I thought you meant the trial before. I think in the UK it’s only available at The Christie and UCL and I know you’re at The Christie.

I’m doing really well, had my second dose yesterday. As far as I can establish (the info sheet is written for a few different cancers with differing chemos (and ovarian has two different chemo regimes to further confuse) I do not get the chemo next week just the trial drug, It wouldn’t have used much extra ink or paper to spell out exactly the routine for each.

If you are on the trial, Day 1, Cycle 1 is eight to ten hours of tests and observations from blood results. By squeezing mine into eight hours my last test was 2140 so got away by ten o’clock. So be prepared for a v. long day. Fortunately, UCL have their own hotel (not hospital rooms) so I didn’t have to travel my two-and-a-half hours late at night.

Lovely sunny day here. I’m watching my bees protecting their stores from some wasps while at the same time trying to stop a red admiral from attempting to enter one of my wasp traps. Beats having chemo any day.

Have you planted those plants yet? I know a keen botonist like you might whince but I’ve forgottem what plants you said.

Best wishes!

[Katmal-UK]

Hi Lou I have done this combo a for midway through my first recurrence (having developed a reaction to Carbo) and also for 6 cycles on my second recurrence. Cisplatin is so much harsher (sorry but there is no point in me sugar coating it) but I found that Cyclizine w2as good for the nausea as domperidone didn't touch it II took co-codamol and Tramadol for the headaches. Speak with your team, there really is no need to suffer. It took a week in hospital not eating and feeling nauseous for them to get my meds right but you could ask them if you could try cyclizine. Do try and persevere though. After 3no cycles I was NED, though I carried on to 6 and (albeit on a parp inhibitor) have been NED for 5 yerars 1 month. Sending you a big hug. Kathy xx

[Lou53 in reply to Katmal-UK]

Thanks Kathy, good to know it's worked for you and the tips on cyclizine and tramadol which I will raise with the team. Do you think it's overly optimistic to try and carry on working? Reading your profile you seemed to take a break during this chemo. I was hoping to carry on as my return to work has been really good for my mental health but wonder now if this is realistic...

Also I see you are taking a PARP inhibitor. This has been mentioned to me by my oncologist as a possible follow on but I am negative for the BRCA gene. Any thoughts on that?

Thanks and here's to many more years NED for you!

Louise

[Katmal-UK in reply to Lou53]

Hi Lou. I took a break after the first cycle as its cumulative and harsh and I couldn't continue to work/function. Also I didn't want to put myself close to infections/coughs/colds etc. I did, however, against my Consultants wishes, return to full time work asap. I totally believe this really helped me not just mentally but physically. I didn't do a phased return either I want straight back to full time from day 1. With regard top the parp, I am on a trial for Olaparib and it's going well. Been on it for 4 years 9 months. NED for 5 years 1 month. Hardly any side effects. Work full time. feel great (for my age lol). I am BRAC2 positive and there was mention of non BRAC ladies having Olaparib and apparently they are seeing good results. Some ppl say parps aren't chemo, they aren't standard chemo but my team say it's chemo. I don't care what they call it tbh I just know it's probably the easiest (side effects wise ) of the trial drugs (this is my third ) that I have taken. Hope you make the decision that right for you. Do be kind to yourself though regarding working. Big Hug. Kathy xx

[Lou53 in reply to Katmal-UK]

Thanks Kathy, really helpful. I will review the work situation and pleased to hear PARP inhibitor may be a possibility for me. So good to hear that you feel great 😁.

Take care,

Lou

[Janet235]

I am sorry to hear this but as Helen says we all respond differently and hopefully it will just be a matter of tweaking the after meds so you don't suffer too much.

Are you on a regime that will give you two weeks on one week off over 6 weeks?

This is my next proposed treatment and I am really worried about it as my body is not in a good place to start... will post soon.

Meanwhile hope you get through his bad patch.

janet x🌈

[Lou53 in reply to Janet235]

Hi Janet,

I'm on the 2 weeks on and one week off for 18 weeks. I feel reassured by the responses on this forum so will see what I can get with regards to other meds for side effects and update you. My next treatment due before your first I think.

Try not to worry. Side effects are so individual you may find this much easier than me.

Take care,

Louise

[lizzie3bee]

Hi Louise,

I am currently on carbo platinum and gem, so slightly different. However, I experienced dreadful headaches daily for the first two doses. The ONC reduced the gem and I have been fine since. So it's another possibility for your pain. Hope you get it sorted out.

Lizziebee

[Lou53]

Thanks Lizziebee, another option to discuss with them.

Good luck with your treatment.

Louise

[coksd]

Im on cisplatin on its own and I am on emend for sickness and have no sickness hope you have got yours under control.

[Sallyjv]

I know this is from 3 months ago but just a thought on the headaches. Although the ondansetron is good for nausea it did give me terrible migraine/headaches which stopped when changed to an alternative anti sickness.. I hope they have managed to get your side effects under control now.

In am due to start on cisplatin/gem tomorrow after another reaction to carboplatin.

[Lou53 in reply to Sallyjv]

Thank you for replying to me Sally. They did manage to change me to another drug and eliminate the migraine response. Good luck with your Cisplatin and Gemcitabine. I have just come off mine due to recurrence but hope to be on a trial by end of this week.

Louise