Had the anti sickness, flush, then 90 minutes caelyx (in slowly first time) flush, one hour carbo, flush.
Caelyx is a pretty colour isn't it?
Given 2 days steroids and anti sickness pills.
Drinking (and weeing) a lot of water.
Will post in a few days to let you know how I am.
Love n hugs to everyone. Take care, Irene xxxx
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,
Will do.
Drinking means weeing lots (not good for sleep) up and down like a yo-yo. Will invest in toilet rolls lol xx
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
It's so pleasing to read positive posts about this treatment.
Great to hear no side effects. Makes me feel that I can get through this.
I don't expect it to be a breeze. Just don't want it to debilitate me toooo much and let me enjoy life.
Good luck with your scan. Please let us know how you get on.
Love n hugs.
Irene xxx
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.
Good Luck with your treatment Irene.
Love and hugs Wendy xxx
Again Wendy a positive post.
Had a restless night. Too much going on in my mind.
I have 2 day's steroids which I will take and see how I go.
Let's know the scan results and pray for a good outcome.
Take care, sending love Irene xxx
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
I can cope with one crappy week as long as I get three decent ones.
That was a rotten wait - 9 hours!!!!! I suppose it was skeleton staffing in pharmacy and the ward. At least you got it in the end.
Did you take anything for the headache. I was told not to take paracetamol.
Oh the joys of chemo.
Good luck with the next 3 cycles.
Keep us updated on your progress.
Love n hugs Irene xx
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
Francesca x
I was told not to take paracetomol in case it disguised a high temperature
Love kaz xx
Forgot to say, if I needed paracetamol, I'd take my temperature first, if normal I'd then take paracetamol xx
Well done you Irene. That's one less to go. It is indeed a pretty colour. I'm glad it seems to have gone OK. Hope you are well. xxx Annie
Thank you my dear friend and confidant Annie.
Yes one down five to go.
Seems from ladies posts this one might not be as bad as taxol/carb. I hope not as that one floored me.
Speak soon, definitely before Penny Brohn.
Love from Irene xxxx
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.
Had CT scan and will see Onc in May for results.
Good luck with your treatment.
V
Hi Veronique.
Sorry to hear about Archie. I know what it's like to lose a pet. They become one of the family and are missed.
I've decided not to take any supplements at the moment as I won't know what side effects are from what (if that makes sense)
So far just exhausted, a dizzy/muzzy head
and a few pains in chest like bad indigestion.
Hope scan results are good. Please let us know.
Love n hugs on a sunny Friday xxxx
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.
Love Patx
Thanks Pat.
Sorry to hear you have been feeling some pains in chest n tummy.
I had some light chest pain last night in bed but was told this concoction can give you indigestion so I am going to lay off heavy foods.
I am going to take regular tests as and when I need to.
Good no nausea. That's the one I'm worried about.
Take care, love Irene xx xxx
Best of luck with it Irene x
Thanks - I need all the luck I can get lol xxxx
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
Thanks Lovis for that advice.
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.
Love n hugs. Irene xx
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
Love Wendy xxx
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
Yes I knew caelyx was a reddish orange colour. Very pretty sitting in the holder. The carboplatin was covered in a lovely pink colour.
A colourful day.
Hope you are keeping well
Ann and remaining asymptomatic xxxx
Sorry you're on the medication again, good luck, thinking of everyone on this treadmill again. Hope all goes well .Marilyn
Yes Marilyn. There are quite a few of us on the treadmill at the moment and some ladies almost jumping on it as well.
Let's hope we all get off well and Cancer free 🙏🙏🙏
Take care, Irene xxxx
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!
Good luck with your treatment.
Love
Annette xxx
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.
Take care of yourself, Irene xxx
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.
Well not toooooo bad (fingers crossed).
I am very tired all of the time, some chest pain like indigestion and a dizzy head. No sickness thank God.
I've got a mix of constipation and diahorrea. No 2 days the same. As I have a colostomy I have to be careful of bowel movements.
Taking care to keep cool and out of hot water to avoid skin rash/blisters.
Not taking anything else in the way of supplements
Just praying it's all going to do somebgood.
Take care, irene x
Hiya Irene
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.
Good luck with the regime.
Patx
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??
Take care and don't do too much xxxx
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
Hi Irene,
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!
Wishing you all the best
Dawn xx
Hi ya. 5 days to go and counting hey????
So far it's all good. No sickness just very tired and a few chest pains.
It's early days so not sure if I am expecting it to get worse or better.
I've not taken any vitamins or extra stuff to help.
I'll let you know how bloods hold up as that's the worry.
Take care irene xxxx
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