Here I go again - any advice?!

[Hopefulgal1]

Well ladies as you may know I was in a muddle as to what to chose Chemo or Clinical trial.. it turned out my prof really advised chemo before I end up with a bowel obstruction but I was really erring to soaring until Jan to be able to start the clinical trial . Well the Dr of the trial phoned me and actually recommended I do the chemo - but the good news is if the chemo doesn’t work / gets too bad I could still do the trial mid jan! Well advice from any of you wonderful women needed - have any of you done Cisplatin/ Gemzar? Any specially good anti sickness tablets you can recommend ( I’ll ask for emend for first 3 days anyway...) I’m pretty terrified to be honest...😳

[Katmal-UK]

Hi. I have had Cisplatin/Gem. Have you had Carbo previously? To be honest Cisplatin is harsher but did work for me. Sickness was an issue and I ended up on cyclyzine which worked very well. Domperidone didn't touch it but cyclyzine worked very well. You will need rest, listen to your body and be kind to yourself. I finished Cisplatin Gem in early Dec 2013, been on Parp ever since Good luck. Kathy xx

[Hopefulgal1 in reply to Katmal-UK]

Thank you so much for replying - I so hope my story could be similar... I need to get my ‘ big girls pants on” as one of our fellow friends said here..

Thank you xxx

[harpist_UK]

If you're at the Christie they will give you Emend and Ondansetron before the chemo, and takeaway Metoclopramide. I had Cisplatin/Etoposide for the Rotterdam in the summer - I didn't feel sick but had some strange food cravings and was off other foods for a while. I never needed the Metoclopramide. I slept for about 3 days after coming off the steroids. Cisplatin/Gemzar may be different - who knows? I would just say it was doable. Big girl's pants on!!

[Hopefulgal1 in reply to harpist_UK]

Thank you so much for this - so appreciated . I know that I handled Carbo Caelyx very badly so guess this is a case of ‘big girls pants’ indeed!! Xxx

[harpist_UK in reply to Hopefulgal1]

Every one is different....

[Flamingobeef18]

Have not got any experience of these drugs myself but just wanted to send you some words of encouragement. It’s only natural to be apprehensive about starting a new treatment and often waiting to start is the worst bit but I am sure you will cope brilliantly.

Sending you lots of good wishes

Juliax

[Hopefulgal1 in reply to Flamingobeef18]

Thank you so much for your kind words of encouragement I’ll try to be strong again although truthfully I’m a wobbly jelly !! X

[Flamingobeef18 in reply to Hopefulgal1]

As I believe Alexander Pope once said “ to wobble is human”.

Love Juliax

[Hopefulgal1 in reply to Flamingobeef18]

Haha! Well there you are proof of my humanity!!😁

[eileen_alberti]

Live up to your name, go in there as A Hopeful Gal and pray for the best. Bring a good book and a snack. and I hope and pray all will turn out well.

Many Blessings Eileen

[Hopefulgal1 in reply to eileen_alberti]

Thank you so much Eileen - great advice and many many thanks for replying xx 😘

[Yoshbosh]

Good luck with the new regime, Hopeful. Fingers crossed you don’t suffer too badly with sickness. Vicki x

[Hopefulgal1 in reply to Yoshbosh]

Thank you Vicki - I’ll see how I go : another rocky old road to travel but if it shrinks these painful lumps down that would be great...🙏

[Ge0rg1na]

Hang in there and let the Prof do his best for you. Hope to see you on my trial as soon as they feel it's right Gina x

[Maxjor]

You poor wobbly jelly! I would be too--will be too (I am sure) but it sounds like those that have had this regimen have done well on it. Take the pre-and-post meds and find a good junky TV show for the "couch days" and onward. Sounds silly to say but you have the best plan--that you can still do the trial if not working. I am thinking of you and hoping hoping hoping this knocks you back to remission. oxoxoxo Judy

[Hopefulgal1 in reply to Maxjor]

Thank you thank you thank you!! So appreciate this : I’ll keep you all posted xxxxx 😘💕

[Rlenesue]

Yes, the chemo is usually your best bet, especially if your bowel is involved. I hope your chemo works and that you dont need a clinical trial. Xxxooo

[Hopefulgal1 in reply to Rlenesue]

Thank you again - I’ll see how it goes and hope and pray the side effects not too awful!! Xxx

[LittleSan]

I've had carboplatin and gemcitabine. It was successful in getting reduction and stability. Day 8 was discontinued after dose 3 or 4. I felt weak and wobbly and had a terribly sore mouth but tolerated it fairly well.

I'm nearly finished on carbo/taxol and I've had Akynzeo, a long acting (5 days) anti-sickness which has worked a treat.

Good luck. 💐💐 Xx

[Hopefulgal1 in reply to LittleSan]

Thank you Little San. I am so glad to hear from someone who has had this type... thank you!

I so wish you well on Carbo Taxol and I am making a note of this anti sickness!! I’ve just been given a new drug to Take an hour before chemo starts on Monday called Rolapitant - sounds a bit like Emend which did quite well for me before ( mind you I was terribly sick on Carbo Caylex so just shows everyone reacts so differently!) hoping your chemo is bearable and does the job! 🙏❤️💕

[January-2016-UK]

Good luck. You may find this combination more doable than your first line, I hope so anyway. That’s good you can swap over to the trial if needs be. Helrn

[Hopefulgal1 in reply to January-2016-UK]

Now I’m not so sure I will be able the trial Dr thinks so but prof thinks not - and I’m due to start the chemo on Monday! I’ll try calling today to see if I can get any clarity on this now. Well I am so hoping this trial points to an exciting new advance and most of all - it works for you!! Many thanks for replying - it’s so good to Know someone out there who understands...thank you

[ShropshireJo]

Just want to wish you all the very best for Monday. I hope those big girl pants will make you feel like Superwoman! Jo 🌺🌼🌸🌻🌹

[Hopefulgal1 in reply to ShropshireJo]

Thank you Jo - I’m a bit confused now as Prof says if I do this chemo I won’t be able to do trial - however the trials Dr had phoned me to say it would be possible ( should the chemo not work..). So I’m a rather ‘confusedgal” rather than hopeful at present!! Need to take a deep breath. May try to talk to trials Dr again today now!! It feels like I’m playing each off against each other which of course I’m not I was just really interested in doing this trial at some point!! Maybe just take a step at a time - who knows this chemo may just do the job... 5th time lucky 🙏 xxxx

[ShropshireJo]

It can’t be much fun trying to sort this out. Is there any reason why the two medics can’t speak to each other directly. They should know what’s the best for you. Good luck, my fingers are crossed for you xx🌺🌼🌸🌻🌹

[Hopefulgal1 in reply to ShropshireJo]

Thank you again - yes navigating the NHS is tricky it seems straight forward to you and I doesn’t it?! 😁xxxx

[jools53]

Cusp Latin starts tomorrow 🙏 ca125 400 , ready to kick ass again 😘 how you coping on it Hun xx

[Hopefulgal1 in reply to jools53]

Just putting one foot in front of the other Joils. The trial was suddenly whisked off the table so I’m still on the cisplatin - gemzar combo ( at 50% reduced dose) and hoping so much it works but the daily pain I’m in indicates it’s not doing much!! I’ll see soon as a scan approaches. How are you doing? X

[jools53 in reply to Hopefulgal1]

Started steroids today ready for tomorrow, having pain around sides, hoping chemo will kick in and stop it push it back then onto parfs! How’s your ca125? And how many chemo are you up to,have you had pain much? Still only taking the odd parcetmol!just praying I cope with this next lot🙏 Xx

[Hopefulgal1 in reply to jools53]

Keep on day day yo day Jools and wish you well on your treatment x

[jools53]

Ok just got letter from laparoscopy!miliary dissemination with small volume peritoneal disease! Any explanations 👀

[jools53]

Is it normal that heart rate is s bit lower 55! I’m normally around 78 /85 ? Bp not bad 150/85 slight high but comes back down mid day ? Xx

[Phuket]

HI Hopefulgal, I just wondered how you are doing now on the Cisplatin/ Gemzar?

[Hopefulgal1 in reply to Phuket]

No denying it’s a tough one. I went for chemo yesterday and was sent home as bloods too low to have. Delayed probably until Friday I would guess. Are you about to hve the same ‘brew’!?

[Phuket]

Sorry to hear this is such a tough one. I've just been following your story as I am in a similar position. Been on weekly Taxol but can tell it's no longer working so am anticipating the next step. Good luck and I hope your bloods improve quickly.

[jools53]

No2 ca125 rising on cispatin! Now 520! Any advisor as to this happening to any ? But still good results? Struggling but always positive xxx