Well one down five to go, think of it that way, hope you wont have too many side effects, Drinking water after treatment is the best thing you can do apparently but I dont do it. Let us know how you are doing,
Iv had the six still waiting for a scan I was fine I don't take the steriods , my guy is fine with it only because of the side effects , I couldn't sleep with them , good luck
I've had 3 and my scan so see Oncologist next Tuesday so will get results then and hopefully continue with next 3. I get steroids for 3 days after. Was sore after first one but hopefully that was the chemo working on the cancer. No complaints with next 2.
Hi Wendy, do you mind me asking where you were sore? I have had four caelyx now and after each one have had sore pains in my tummy. It was worst after treatment one and has got better after each treatment, I too have wondered if it is the chemo working on the cancer. I have found this treatment quite tiring and found it hard on my digestive system. Good luck with the rest of your treatment xx
I had second caelyx and carbo yesterday at the Christie. Sure to bank holiday and usual chaos I was there for 9 hours. I did get some nausea after first but my stomach is easily upset and some headaches but felt pretty good for last 3 Weeks. Good luck with yours x
Hi Irene, I just take paracetamol and my doctor didn't say don't take it so I'm wondering why you were told not to. Lovely day here in Stockport and I'm going for little walk to feed the ducks
Hello Irene. I was interested to hear about not being able to take paracetamol. My Mum took paracetamol quite a bit during her initial carbo/taxol/debulking Do you know the reason why it shouldn't be taken? Thanks. Jane
Hello, Only just started reading the posts again after losing my Archie cat who was my companion and needed so much attention.I keep wondering if I should have tried more treatments for him. Also, had just finished 6 mo. of Caelyx/Carbo.
If you have seen my previous posts I recommended high doses of Vit E and B6 whilst on Caelyx. I checked this with hospital pharmacist. I'm sure they helped me avoid the usual side effects of sore hands/feet and mouth ulcers. I did get a sore arm once from the cannular but it didn't last and a few other odd small side effects but on the whole I had little problem.
Hello Irene. I am just on Caelyx. Found I felt great on the steroids for first 3 days but then slept for 2. Yesterday, made myself go out but think overdid it as got the shakes when I came back. Haven't felt sick. Tight feeling across chest all the time and low down pain worse than period pain. Hope you fair well with treatment. I am hoping to feel better with each day.
Hello Irene. You seem to be coping fine style. It's not too bad really. I have horrible indigestion however and was sick last night. They give me Piriton and Ranitidine and a lot of steroids which seems to make me more nauseous. At the RM there was no Piriton or Ranitidine or large doses of steroids so they obviously have different ideas at Ipswich under this oncologist. I think it makes me worse. Anyway it only lasts 3 days for the worst symptoms and then I'm fine.
Let us know how you do over the next few days and remember to keep cool to avoid the rash! Love Lovis xxx
I have taken my 2 steroids this morning and will see how I go with the others. If they affect me I won't take them.
Hope I get just 3 bad days and then the rest get better every day.
Will miss my hot steamy bath but hey ho, that's life.
Will let you know how I get on.
Seems like my "roller coaster drawing" (remember our research day in Hammersmith) is on the downward path. Hopefully after this 3rd line it will be on the up again.
My pain was in stomach and back but I had pain due to liver capsule stretching. Was taking analgesia for that. Since the pain after the first chemo I haven't required analgesia so all good!!!! Why were you advised to avoid Paracetamol? Chest rash band dry skin after first but changed to Dove body wash and all good
Will keep you updated. Good Luck to everyone going through treatment
Hi Irene. Great that the first one is over now and pleased it went well. It is a nice colour, those tones are in the shops at the moment so your in fashion lol. Hope you don't get any side effects but if you do that they will be mild. Ann xo
It is a pretty colour lol! I don't particularly drink a lot of water but I still end up weeing a lot after chemo. Just put it down to all the fluid pumped into me! I also get pumped full of steroids due to previous reactions to chemo. Got last chemo of 2nd line tomorrow so just about to take 10 steroid tablets and antihistamine tablet! Got another 10 steroid tablets to take in the morning and then will have steroid drip with chemo! Then the usual steroid tablets for 3 days following chemo! High as a kite lol!
Hiya Irene. Just an update on progress with first caelyx treatment. 3 days great ( compliments of steroids). 2 days asleep, 2 days tummy pain. Today tummy pain bit better. Expecting to be even better tomorrow. No other side effects to report.
Interested to know how you are experiencing treatment.
Well I am pleased to report so far NOTHING AT ALL. Took my steroids yesterday and didn't have a very good sleep so I haven't taken them today. Hopefully I will sleep a bit better.
Very red in the face, flushed is the right word.
Haven't had bowels open, which for me with a Stoma is a worry, so I will take some Movecal this evening to see if that helps. What a subject, sorry.
No pains in stomach or anywhere else. Keeping out of sun and hot water. Not taking any other supplements, chemo nurse suggested just to stick to the chemo and then we will know what is causing side effects, if any.
Just wondering how you are doing? I am now 2wks in. Tiredness better, tummy bit better. Think due to constipation. Taking more movecal than I usually do to pardon the pun - get to the bottom of the problem.
Caelyx definitely is making me more tired. But improving. Affects bowels also. Have to constantly take Lactulose to stop becoming bunged up. If I don't get lot of pain in this area. It must be even more difficult with a colostomy. I am taking supplements in the form of high strength Vit E and B6 which ladies on this forum have suggested. Just hope I am doing right thing. We do our best don't we? Going to chase second opinion tomorrow as I will be seeing my Consultant a week tomorrow, so time is getting on. It won't be long before my next treatment.
I definitely agree that a lot is very tiring. I get very dizzy heads as well. I'm ok with the bowels so far, no major concerns.
I'm not taking any vitimins as I don't know what dose to take and don't want to overdo it. I've never taken supplements before so don't want to mess my bidy up too much. Be jnteresting Tom know what your oncologist says about the B6 and Vit E.
I'm due to see mine on 7th May, so a while yet.
How many Caylex have you had Pat, this is my first one of six??
Just had the one Caelyx so far. Next due 29th. Consultant said she would arrange for a scan after second treatment which I am not happy about as I have noticed on forum most ladies have 3 before having scan because Caelyx is slow acting. My Consultant said she would take me off it if there was no sign of improvement. Also other drugs not so effective. Don't know where this leaves me that is why I am seeking second opinion at The Christie. Also got increasing discharge which she seems uninterested in. Lost confidence basically. She is far too blunt and gives me no hope. Dont know whether to even tell her about the Vits.
So we are nearly neck and neck with the treatment. My first was on the 7th April Nd next due on the 8th May. My onc sits in clinic in a Thursday so I have bloods done, the. See her and if all good she does the prescription there and then for the chemo the next day. She pretty good (I think) and I see her more than her registrars, who are apparently scared of me lol. I ask far to many questions.....my oncologist calls me Dr Google 😂😂😂😂
It's a real shame you have lost confidence in your oncologist, because these are the people we have to trust and turn to when things are not so good. I don't blame you for seeking a 2nd opinion and I have heard that Christies is brilliant!!!
I wonder what the discharge is. I must say I have had a very itchy underneath but no discharge. Let me know what she says, if she says anything. Also abiut the vitimins, be interesting to hear her take on it. I will be asking mine on the 7th, so will let you know.
Take care, it's a lovely day here in London, just a pity I can't lay in the sun 😢 xxx
Very upset just now. Rang the christie to see where I am up to with appointment. Apparently no record of me. Rang gp - apparently forgot. I can't believe it. Not only do I feel overlooked by my oncologist but gp aswell.
Glad to hear you are doing well on the side effects.. I will be on the same roller coaster as you in 13 days time ( not that I'm counting!)., so I'm very interested to see how it is going with you, you are my test dummy!
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