Writing this with my left hand as venflon is in my right hand! Yes first recurrence!
I was surprised, as I’d coped well on a busy tour in Israel. (Photo of hubby & myself; can it only be a couple of weeks ago??).
Had ‘nodules’ (very small) on CTs in April & Sept; now they are all growing, with some new deposits on the liver & a cyst (?) above vaginal vault. Oh and a small R pleural effusion! Was I breathless? No...well only on hills...I thought I was just getting old 😂 I made the Registrar laugh!
The Registrar couldn’t have been kinder❣️ Also seen familiar faces in the Macmillan Centre & Maggies yesterday. Also recognised a receptionist & some of the lovely nurses today.
So, here I am in the Chemo Suite. No reactions. Sleepy from the antihistamine. The lady next to me is on her 2nd Carbo/Caelyx. I’ve been nervous about the Caelyx because I know it can be harsh. She said she’d been ok, just nausea during the first week. I know a few of you ladies are on Caelyx, or about to start. I’ve armed myself with Aveeno shower wash, hand cream, mild toothpaste etc. Ladies, what about using a hairdryer?!
Wishing everyone well,
Linda xx
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Thanks Lyndy! I think we are quite similar in that we both have nodules & were on ‘watch & wait’. I was sure it was going to be the same this time....but no! Yes SO glad we went on holiday 🔆 Hope you are doing well x
Hello Linda - I am glad you had such a lovely holiday. With your batteries recharged, caelyx/carbo will be a walk in the park. I have just finished my 5th cycle of caelyx/carbo and apart from fatigue I haven't had any life changing symptoms. Caelyx can take a few infusions to "kick in" I was horrified when after the 1st infusion my CA125 rose dramatically, but it has started to come down after the 2nd infusion and has continued to do so. Good Luck with your treatment. x
Yes I use a dryer on medium setting as I have very wild hair (think worzel gummage) I have noticed recently that my hair is a bit thinner on top than usual, no bald patches but definitely thinner. I have invested in thickening shampoo/conditioner and body building mouse, haven't used yet, will let you know. x
Thanks, I’m doing ok, but I am back on treatment. Like originally, the disease is small and scattered, so no surgery. My oncologist seems confident that chemo will knock it back, so here’s hoping! 🤞🙏🏻 Wishing you all the best!
So pleased all went well. Yes the chemo suite is quite small .I remember on a few occasions going upstairs to another suite when I was having avastin .Mostly just a few small rooms. Ann x
Ah Linda - I’m sorry you’re experiencing a recurrence. I hope the Caelyx does the trick for you and that it isn’t too challenging.
I’m working towards posting as lots has happened to me this year, but I’ve got some more appointments in the pipeline so I think I’ll leave it until later in December!!
Hi. Your holiday looks great-nothing like it! I’ve just had two Carbo/caelyx infusions. I’m miserable from day 3 to the morning of day 8 but it’s nothing like frontline. Then there are three good weeks! I’d be careful about the hairdryer. Keep it tepid. I am icing my hands and feet and mouth during chemo but still got mouth ulcers. Good luck!
Hi Linda. I’m so sorry to read you’re back on chemo. But pleased that you had a wonderful holiday before starting more treatment. Hope it goes smoothly and that Caelyx works well for you. It’s a great photo of you both in Israel.
I’ve just finished seven and a half months of chemo. Swapped Caelyx for cisplatin and gem which suited me better. I’ve been in hospital just over a week on IV antibiotics for an infection and now platelet and blood transfusions which will hopefully give me a good start to recovering from the chemo. Like Ali, I haven’t posted for a while but will do an update soon.
Thank you for your good wishes. Yes it was such an interesting & enjoyable holiday!
Reading between the lines, it seems you have had a rough time these past few months, with some Hospital admissions. I hope you are being well treated & leave much stronger after those infusions.
Hello, lovely photo, makes me think you like sun and probably sea, hence your name.
It’s a long time since I had carbo/caelyx but I remember being very cautious with my hair, I use Johnson’s baby shampoo and brush gently. Nurse told me use a wide toothed comb. I’ve always a hairdryer on medium heat.
Yes Reading does seem a long time ago and it was sunny and warm, ah.
I’m doing fine, about to have my last taxol infusion on Tuesday. Last of 16 spread over 6 months. I’m looking forward to no more hospital visits but always wonder, what’s next.
In the meantime preparing for Xmas. Hope you are well enough to enjoy the festivities.
Hi Linda. Great photo. Been to Israel and found it amazing with all there is to do and see.
Sorry about being back on chemo. I found Carbo Caelyx to be the least harsh for me with days 3 and 4 the hardest but it may have been the Carbo too. We all seem to react so differently.
Wishing you a smooth and uneventful time on it, and back to remission for you.
Hope things are going well for you on your trial xx
I am on Caelyx too, wonder should we start a group just joking. I hope you wont find the next one too harsh. My main problem is my bowels, they either go one way or the other. I moisturise my hands regularly, I do use a hairdryer and get it shaped now and then when needed, I was told I can colour it without any ammonia products so doing that. It has thinned but the thinning is far more noticeable when my colour fades. Hope that helps
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Signing a form to agree that the chemo only palliates the disease
Meeting with oncologist quick update
1 Month Down - all good on Niraparib/Zejula
