How are you all? How are you all dealing with this crappy disease?
I’m still being drained every other day and my syringe driver is changed every day.
I’ve not had cisplatin for many weeks. My creatinine levels are too high. Seems cisplatin is what’s bringing my CA125 down rapidly but I just can’t have it.
I’ve had gemcitabine a couple of times but it doesn’t seem to do much.
I see my consultant on Thursday. Will see what his next plan is.
I just wish I could eat. I struggle to drink too. I’m always sick in the evening. Gets me down. I’m thin and it looks awful.
Thank you all for thinking of me.
Sending you all lots of love, hope and positivity.
Xxxxxx
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Suzanne333
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Hi Suzanne, lovely to hear from you. I'm so sorry you having such a crappy time not good that you can't eat and struggling to drink, I remember that feeling well earlier this year it's utter crap, can you try a build up drink sip a little bit throughout the day? I hope your onc has a good plan for you, maybe something to help the levels so you can continue with the cisplatin as it seems to be helping. Please let us know how the appointment goes. Sending a huge hug and lots of love xxxxxxx
Hope your consultant has some ideas of how to support you - have they considered in line feeding as an option as not eating and drinking are bound to have an effect on your kidneys as well as the chemotherapy - thinking of you and wish there was something I could do to help as being sick and hungry my worst nightmare xx
Lovely to hear from you Suzanne. I fully understand that unable to eat or drink pattern. I couldn't hardly face oral tablets as i would retch. Plain water was hideous. Have you tried sparkling flavoured water. I found that more palatable. Good luck for Thursday and the next plan x
Hi Suzanne , lovely to hear from you and sorry you are feeling so bad . As Gleedy has said have a try of sparkling water , its the only thing that tastes Ok to me . Xxx
Good to hear from you Suzanne though I am sorry to hear you are feeling so rough. Hopefully your onc will have a plan when you see him on Thursday, do let us know how you you get on. Sending you a big hug. Kathy xx
So glad to hear from you my lovely friend, I'm so sorry your not feeling very well. I'm praying that our consultant in broomfield has something different for you. I was really worried we haven't heard from you for a while. I didn't want to disturb you with text. Take care and good luck for Thursday. Xxxxxx
So pleased to hear from you. Do try the flavoured sparkling water the others have suggested. I think drinking plenty will help reduce the creatinine levels. Cisplatin is very hard on the kidneys and must be doubly so if you cannot drink or eat much. Can you not be given lots and lots of saline in order for you to have another Cisplatin? Maybe worth asking on Thursday, although I'm sure if it would help your team would have already suggested it. Worth an ask anyway.
My first time round, the ascites and pleural effusion were so bad, it was impossible to eat or drink. Naturally, I was also vomiting all the time.
They gave me a syringe driver and tried different meds, but in the end I could barely walk to the loo, 5 feet away from my bed, and the driver was so cumbersome it only added to my misery.
I was so poorly, I don’t really understand why they just didn’t hospitalise me immediately.
Finally, my sister dragged me back to the Chemo Suite, and there they asked me if I wanted to be admitted for stabilisation. Why did they ask?
I was thin as a rake, I could not walk 3 steps without panting from breathlessness, and I was dry as a bone.
Turned out, both lungs had collapsed and they were full of blood clots, my kidneys couldn’t function without hydration and they kept me in hospital for 10 days of 24/7 IV fluids and vitamins, horrible steroids, blood transfusions, but found an anti nausea med that I could manage and released me all stable, re-hydrated, and nourished, in time for my nest chemo infusion, which thank the lord, killed enough of the cancer that my ascites and pleural effusion suddenly disappeared and I could breathe, and drink and eat again!
So nice to hear from you lovely, I’m so sorry you’re having such a rubbish time, we’re all here for you. Good luck with your consult on Thursday I hoe you get some positive suggestions for the way forward, please let us know how you’re getting along, Love and gentle hugs as always. ❤️Xx Jane
Hi Suzanne, sorry to hear you’re having such a bad time. Have you tried Fortisip (milkshake type therapeutic food drink)? I truely hope you get some positive news on Thursday. Sending hugs 🤗. Please let us know how you get on Lynne 💞
Hi Suzanne ... such tough times, so many of us going thigh deep mills at the moment..
I now how a semi permanent lung catheter ( in over a month now) but when I was in hospital for 3 weeks I opted to have a semi permanent ascites catheter as well fitted.
I learnt a thing about all this fluid the body produces trying to defend it against advancing disease when I was having this done.. about a litre and a half was drained from abdomen then capped off.
Was told only to drain when I got uncomfortable ( i.e. Trouble breathing, stomach hard and uncomfortable) because as soon as you drain it off the body just produces more 😳. Never ending pattern..
Really sorry to hear you're having such a tough time Suzanne. Sounds to me as if you urgently need IV fluids to make sure your kidneys can flush out all the toxins. Sending love, Woody xx
Thank you for updating us - I think we all worry when someone goes AWOL
I'm sorry you are having such a rubbish time. Do you think a little spell in hospital to stabilise your condition would help? If you aren't eating and drinking very well, maybe you are dehydrated/malnourished and that won't be helping at all (a bit like Laura's experience, above).
Hi Suzanne, I'm glad you posted I was wondering how you ere going, I know how you feel about eating, I've lost so much weight that I have no cloths that fit and only a few months ago I took a lot of cloths to the OP shop thinking I'll never get that small again, I could now.
My GP has me on a low dose of steroids 5mg a day and I think it is helping with my appetite plus I'm taking cannabis oil I do think the oil is helping me sleep, also I've been off all treatment for a few months now and this has helped wit my fatigue, through my 125 is now 2,700
I meet with the Palliative care DR yesterday and and was told that they would be there for me when I need them.
I"m like you was told no more options but find it hard to accept that arfter all time I've run out of options,I hope when you see your consultant on Thursday he has a good plain for you..Take care hugs Lorraine💙💙 xx
Dearest Suzanne, I have been thinking about you so it is good to hear from you but I am so sad to hear what a horrible time you are having . I cannot tell you how I wish I had a magic wand to make it better. I hope the consultant comes up with a plan . All I can send is my sincere best wishes . Love Chris
Suzanne - being thin is miserable, illness all too noticeable. Agree with all comments above. I’m on those milkshake supplements, I think they are good. Sending you lots of love from Provence - Nicola
So good to hear from you but sorry you not feeling so great. Sending strength and happy thoughts to carry you through the bad times and hope you can find something you feel like eating. Take care 🌹🌹
So sorry to hear you are having such a rubbish time. I had problems eating and drinking when diagnosed, through chemo and when my bowel perforated. The only thing I could drink was tonic water. Fevertree make some delicious varieties, especially the 'pink one' it has angustora bark in it. Might be worth a try. Sending big hugs and hoping your appointment goes well next week x x x
Hi, sorry you are having a rough time. What about trying really sharp lemonade or pineapple cubes? I remember not being able to eat and my daughter came up with the idea of feeding me squares of chocolate that I could let melt in my mouth. Thinking of you xxx
Hi Suzanne--so so glad to hear from you, not so glad as to what you are going through. I do hope there is another plan that you can tolerate better and they can help you with not getting sick so you can eat and drink more. Sips of anything high caloric is a good start if you can do it (if you have Vitamin Water over there--it has so many good things in it, including electrolytes which you need if you are getting sick every night). Wishing and hoping their plan gets you back to feeling well. Really missed you here. oxoxoxx Judy
Good to hear from you. I'm on very different treatment but have problems with high creatinine. They have kept me going by regular iv fluids and a lower dose but I think Cisplatin is a much harder drug to take. I do hope you can get back on this treatment as it has obviously bern working. Sending much love.
Hi lovely xxx so sorry you’re still having a crap time and you can’t yet have the one thing that’s seems to have helped! Fingers crossed they can sort your creatinine levels out!
All I can offer is a huge hug and all my support xx you are a trouper and have beaten the odds already! Keep on keeping on and I’ve everything crossed you turn that corner soon xx
Really sorry to hear about the cr*p time you’re having Suzanne. No practical help so will,just send you lots of love, positive vibes and gentle hugs and a large bouquet of 🌺🌼🌸🌻🌹🌺🌼🌸🌻🌹 Jo xx
Thanks so much for posting and lovely to hear from you. Just sorry you are going through such a horrible time. I hope your consultant has a good plan for you going forward I do hope you feel better soon, keep going. Thinking of you and sending hugs. Xx
My new attempt at sickness control, which isn’t great, is highland spring fizzy water. Out of all of them this has a very slight hint of saltiness and it seems to just take the edge of it sometimes
It's good of you to have found the time and energy to write to us. As you can imagine, we are all constantly thinking of you and others who are going through very difficult and challenging times. I do hope your appointment with the consultant has given you renewed hopes.
Please connect with us whenever you wish to...xxx
Maryanne
Good to hear from you, but sorry you're in such a rough place. You've had lots of good tips already.
I've recently had an alarming kidney episode with v high creatinine and am now on cisplatin.
Stop worrying about not eating and concentrate on getting any liquids in to flush the kidneys and get the level down. I found variety was the thing. you get sick of water. Apple, coconut, orange, cranberry, aloe juices.......... I've got quite a thing for Badoit water at the moment. Just a touch of fizz and does settle the old tum. And slices of fresh ginger in hot water makes nice drink, hot or cold, Mint ditto. Anything wet helps: yoghurt, soup. I also found setting the kitchen timer helped to remind me to have another drink.
Glad to hear from you, Suzanne. But crushed that you're so poorly.
Love Laura's and others' posts about possible options to help you get some nourishment into your body... possibly in the hospital. Hope one of them works for you. Is TPN a possibility?
Hi Suzanne I started cisplatin yesterday and I had a 2 hour kidney hydration flush before then the cisplatin over two hours and then another flush for 1.5 hours. I was very weak today. I was given an anti-sickness Emend its made by Merck in Dublin i was given 125mg yesterday and 80mgs for today and tomorrow. I am so tired but didn't get sick. I am in a private hospital now so got a prescription to bring the meds for the next session. Hope you improve soon you are strong xxx Take Care Clare
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