Hi lovely ladies.
I’m still in hospital but the drain was done today. I’m still draining. I’ve got a permanent drain. Feels weird.
My consultant has started me on a new chemo regime this Monday. I’ll be having cisplatin and gem.
Fingers crossed I can tolerate the cisplatin as I can’t have carboplatin.
Has anyone else had these two chemos? My consultant says they’re harsh.
Hoping all you ladies are all doing ok xxxx
Hi I just wanted to wish you all the best. I hope cisplatin works well for you. Looking forward to reading more of your poems. Best wishes Angela
Thank you Angela. I will definitely be writing more poems. Xxxx hugs xxx
Hi Suzanne I am glad you met your oncology team and they have a plan in place for you. Of course they do! that doctor the last day was just horrible. I heard Cisplatin is better than carboplatin in some ways from my oncologist but has a few bad side effects but you are young and strong and will be able for it, Maybe try reflexology in between your treatments and they may use some essential oils that help reduce side effects. Hope the drain will sort the fluid issues for you and you get up and about soon and get back to yourself, sending you lots of positive energy to get well soon, xx Clare
Thank you Clare. I’m hoping so much that I can tolerate it. Reflexology is a good idea.
I’m hoping the draining goes well.
I hope you’re doing ok.
Big hugs xxxx
Hi Suzanne,
I had carbo/gem for my second round, and I found it easier than carbo/taxol. However, I know that cisplatin is harsher than carbo, and I don’t think I’m the best judge of chemo side effects as I haven’t really struggled too much so far.
I hope that once you get cracking, you start to feel better. I’m so glad there was a plan for you. If you do OK on this this, ask if a PARP might be an option, as it is supposed to follow a platinum-based therapy.
Vicki x
Hi and thank you Vicky.
My consultant has said that if I can tolerate the cisplatin and my tumours shrink enough then I can have either olaparib or niraparib.
I’m hoping and preying I can tolerate it.
I hope you are doing ok xxxxx
I’m so glad you are hopefully getting a PARP! Keeping everything crossed for tolerance and shrinkage 🤞
I’m feeling OK. I actually feel like the ascites is starting to go down, so I have bought a tape measure to monitor progress - I’m going to report back to my new dr next week if there’s an improvement. Vx
Hi they can do slow infusion like I had so u will tolerate xx
I hope it goes well. I have had cisplatin but only for one IV infusion and it was not too bad however I do not think that is very indicative. As far as I know the gemcitabine is difficult on your bloods so perhaps you may need some assistance with that.
Roni
Thank you Roni. It’s nice to know what to expect. 👍🏻👍🏻
I hope you are doing ok.
Hugs xxxx
So sorry Taxol didn't work out for you. Wishing you every success with the new regime xxx Love and Hugs Maxine xx
Thank you Maxine xxxx
Hi Suzanne. Hope the Cisplatin /gem works well for you. Yes they are harsher but totally doable! You can get through this. There were times tbh when I didnt think I could but I did and you can too. Just be very kind to yourself, get tour anti sickness sorted, cyclizine was the one that worked for me xx big hug xx Kathy xx
Thank you Kathy. I need to get these tumours shrunk so I can go onto a PARP.
Thank you for the tip about the anti sickness tablets. I will ask for those.
I hope you’re doing ok xxxxx
Hiya, sorry to see you are still in hospital but so glad you've been drained & you have it fitted now so hopefully no more painful tummy. I've not had cisplatin but did have Gemictibine for third line I managed it okay, tiredness was a factor but managed that and I did have to have a couple of transfusions to help with the red cells but apart from that it was tolerable. I will be keeping everything crossed that you can tolerate this combination and shrink those buggers!!
I hope you are able to get home for the weekend and your appetite is back so you can build your strength up ready for Monday.
Xxxx
Ahh thank you for the information. I’ve heard the two together are a bit harsh but I’ve got to do it.
Yes I’ve got to shrink the buggers then I can have a PARP.
I’m coming out of hospital today. The district nurses will visit soon to show me how to empty my drain in future.
I hope you are doing ok.
Big hugs xxxx
I do hope you got to spend the night in your own bed & are able to relax over the weekend. I'm doing ok so far, still a way to go but feeling hopeful. Please let us know how Monday goes, will be thinking of you ❤️
Thank goodness Suzanne!! I knew there would be a plan and hope at the end of a long tunnel for you!
I feel like finding that horrible doctor for you and reminding her of her insensitive erroneous comment to you a few days ago!! She needs to learn the impact this has on patients who are already feeling vulnerable and ill!
Here’s hoping the new regime zaps the beast good and proper and you don’t do too badly with the side effects x
I know you’ll be nervous on Monday because of your carboplatin experience but I’m sure this will be fine and I’m sure you’ll be monitored very closely! Are they keeping you as an inpatient until you’ve had the first lot?
All the best of luck lovely lady and massive hugs to you xx
Keep us posted and please complain to PALS when you can about how you’ve been treated I am still so upset for you x
Hugs
Bev xx
Hi Bev.
Aww thank you.
Yes that Doctor was horrible. She scared the life out of me. I might just complain about her. I did tell my CNS about her.
I’m nervous about chemo Monday. Two different ones and not knowing how I’ll feel but I e got to zap the gremlin.
Big hugs back to you Bev xxxxx
Pleased to hear your news, and you are over the worst. At least with a permanent drain, whilst inconvenient, will stop your bloating and emergency treatments.
Good luck and hope you can enjoy the sunshine today after Armageddon yesterday(at least it was in Sutton)
Much love JackieO xx
Thank you Jackie.
Yes it will stop me having to go to hospital and be drained. Hopefully once I start chemo, the ascites will stay away.
We had lots of rain here in Essex yesterday.
I like the rain.
Love and hugs xxxx
Such a different post from your last one - I’m so glad you now have a plan and I hope it’s not too harsh. Good news too that you may be able to have one of the PARPS. I’m hoping to be able to have one too, when I’ve finished Carbo/Caelyx. Everything crossed. Lots of love, Ali xx
Hi Ali.
I hope you’re getting on ok with your chemo and then you’ll be on the PARP. I’ve heard good things about PARPS. Give us a good break from chemo.
Keep us up to date on how you’re doing.
Big hugs xxxx
Is it the pleurx drain?
Yes. I’ll have a tube sticking out of me.
Do you have one? Xx
My mother had one. We as her family were trained to do this at home. We got the hang of it pretty quick. She found the drain very uncomfortable having it in and getting it put in also. Hope it works well for you. It was great though we didn't have to go to the hospital everytime. Wishing you all the best in your treatment. X
Hi Suzanne,
I have had two severe reactions to Carbo so will be starting Cisplatin & Taxol, due to still being on antibiotics from the infection I can’t go back on chemo until crp and other blood are checked next week.
I know Katmal has done Cisplatin, and so has other ladies on the site.
Hopefully the draining of the fluid will make you a little bit more comfortable, and that this regime works for you.
Hugs Ellsey xx
Hi Ellsey. Yes I’ve heard it can be tolerated if you’ve had a reaction to carbo. I’m keeping my fingers crossed.
I hope you get on well with the taxol and cisplatin.
Sending you hugs xxxx
Hi Suzanne, Julie40 has just completed this regime. She found that she had to rest a lot more than she ever has but had done it and even got through her daughter's wedding and gone on holiday whilst on it. Bearing in my, in my eyes she is superwoman, I hope this inspires you to say you can do it!
Add details of your plan to your complaint, in order to educate that dreadful doctor.
Love and luck to you. Xx
Hi
Thank you for letting me know. It’s nice to be aware of how it could make me feel. I’ll just rest up and do as my body tells me.
Hoping you are ok.
Big hugs xxxxxx
Glad to hear you have sorted out some new treatment, you sound a bit more upbeat today. Can't advise on your new chemo but I do wish you every success and hope you are home soon. Take care Lyn x
Glad that they’ve sorted a permanent drain out for you and that you’re feeling a bit more comfortable - good luck with the new chemo regime - wishing you all the best x
You are so lovely and so positive, even though I know you'll be shit scared about the new chemo. Hope you'll have partner or friend with you for the chemo so they can get help immediately if you have a bad reaction, although I believe there are other ladies on here who reacted against carbo but have been fine on cisplatin. Sounds like you have a good consultant and glad that Dyno-Rod got your drain sorted out. Love from us both, Woody & Suzanne xx
Aww thank you. Yes I’m scared. I’m scared I could react to the cisplatin and I’m a bit concerned about it being quite a harsh regime. No pain no gain though. I’ll keep strong.
My consultant is the best I’ve had. I really know he’s there for me.
My drain is funny. Looks like I’ve got a tail at the front.
Lots of love back xxx
They told me at the Christie that reactions to cisplatin are rare. They don't even bother watching me there!
Hi Suzanne---how are you feeling with the fluid being drained--is there room now for you to eat well? I have not had Cisplatin and gem but I hear they work quite well in many. I would ask in the forums (Kathy/KatMal had a suggestion of an anti sickness drug) for all those things that helped people on this combo. There is another site called Inspire.com (then to OC within Inspire) and they are a bit more scientific about things like this (at times) so you may want to log on and ask about what kept things tolerable. I know you can do it and the goal of reducing the tumors and getting rid of the ascites AND the possible PARP after will help when you don't feel well. Wishing you lots of luck (when do you get out of the hospital, any idea?) And hoping your sig other is there for you???? Thinking of you--anything you need from across the pond, let me know! Hugs and more, ooxx Judy
Hi Judy
I came out last night. The drain is a bit painful but I’m sure it will settle down.
Katmal did give me the name of a good anti sickness. I will look into the inspire.com.
Just need to get a tumour response in order to get the PARP.
I hope everything is ok with you Judy.
Hugs xxxx
Hi Suzanne, glad there's some action at last. How are you feeling in yourself now you've been drained? Been thinking of you. Love Zena xx
Hi Zena.
I came home last night. I feel a little relief but the drain is sore and tender. Weird thinking there’s tubing in my tummy.
Hopefully it will settle down.
I hope you are doing ok
Big hugs lovely lady xxxx
I'm fine Suzanne, thanks.
I expect your drain will get more comfortable, I hope so anyway. All this stuff that happens to us is a bit weird. You're just more weird than the rest of us. ha ha
Take care, Zena xxx
Positive steps for you especially after your last post, I hope the permanent drain makes you more comfortable long term and now You will be able to start your new regime. I have no experience to draw upon so can’t offer any advise but just wanted to send you big hugs and love and support as you embark on this, hopefully last stage in your battle with the beast. I truly hope this shrinks your tumours enough to enable you to have one of the PARPs. I should complain about that horrible doctor, she shouldn’t be allowed to go round scaring people in such a way 😤. Keep being your beautiful self ❤️Xx Jane
Hi Jane. Aww thank you.
The drain is weird. Feels sore and a bit painful. Hope it settles down. Looks like I’ve got a tail at the front of my body.
I’m hoping beyond hope that I can tolerate the cisplatin. It will give me more future treatment options.
That doctor was horrible. I came across another horrible one too. Then I told all doctors that I’ll happily discuss my draining with them but not anything cancer related as I’ll only speak to my consultant about that.
I hope you are doing ok
Sending you a big hug lovely lady xxxxx
Hi Suzanne
So glad you are sounding really upbeat and so much better. It must be a relief to have the permanent drain in and get rid of the Ascites. I haven’t had either of the drugs you are going to be on, but I really hope and pray they knock the baddies back for you. I also hope you cope alright, but as one of the ladies said you are young and strong. Take care, lots of love
Sophia xx
Thank you Sophia. I’m going to bash these gremlins back again. They’re annoying me now.
The drain is weird. It hurts and is sore but hopefully it will start to settle.
I hope you are doing ok lovely lady.
Big hugs xxxxx
Hi Suzanne - I have just done 6 cisplatin infusions and after 3 they told me it had smashed my CA125 in half - I don't know what it is now, but I'm hoping it has done more good work as some of my lymph node lumps have gone down. It's in combination with Etoposide tablets as part of the Rotterdam regime (see my profile). At the Christie you get Emend as well as ondansetron for the first 3 days, plus the usual steroids. I haven't been sick at all, but I haven't been sick with any other chemo. I am fine as long as I keep eating at regular intervals. With this one, by day four I just have to give 3 days over to sleep - it made me very lethargic, but it's a small price to pay for some tumours being smashed. Oh, and it gives you a horrible dry mouth and taste. But it's doable. I have had gem as part of the carboplatin/gem combo last year and it knocked my blood counts a bit. But doable. No hair loss on either gem or cisplatin. Best of luck. x
Hi
Thank you for your message. It gives me an idea of what to expect. When I had carbo/taxol first line I had about five days where I felt done in. I just want to make sure I don’t get nausea. I’m being sick a lot at the moment but that’s not nausea , it’s because my stomach is being squashed by a bowel thickening and so I throw up a lot.
Hopefully the chemo will reduce the thickening.
I’ll plough through the regime and hope to get the same good results as you.
Sending you lots of love. Xxxxxx
Make sure they give you good laxatives too, as both the cisplatin and ondansetron are constipating - Christie gave me sodium docusate in addition to Movicol, and have had no problems. Reducing tumours and thickening should happen with the chemo and make you more comfortable. xxx
Recovery from ascites drain?
PleurX semi-permanent chest drain
Ascites drain shutting bowel down and green bile sick.
