Great holiday....then CT! Everything is growing 😥 Caelyx/Carbo in progress now!

[Seasun36-uk]

Hello Ladies,

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

[Lyndy]

Hi Linda

Well.. given all that, what a good thing you did go on holiday and had such a nice time! Hope all goes well xx

[Seasun36-uk in reply to Lyndy]

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

[Welshandproud]

Sending you a huge amount of love Linda. You can do this. Lovely picture of you and Steve too xxxx

[Seasun36-uk in reply to Welshandproud]

Thanks Sian. It was lovely to see familiar faces today - Ali & some of the nurse’s. Thinking of you too x

[Welshandproud in reply to Seasun36-uk]

Enjoy flying high with the red Devils xxxx

[Seasun36-uk in reply to Welshandproud]

😂🥰

[Hidden]

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

[Seasun36-uk in reply to Hidden]

Thank you Lyn. I’ve been reading your posts with interest. All the best x

[Seasun36-uk in reply to Hidden]

Lyn, do you use a hairdryer? On a cooler setting? X

[Hidden in reply to Seasun36-uk]

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

[Seasun36-uk in reply to Hidden]

Is that the one called Plantur (?) with caffeine in it Lyn? X

[gmc920]

So glad you went on a lovely holiday (you look wonderful and happy 😊)! Wishing you much success with the Carbo/Caelyx.

xx Gina

[Seasun36-uk in reply to gmc920]

Aah thanks Gina! Hopefully the buzz of the holiday will carry me through at least the first part of the treatment 🙂 Hope you are doing ok? Lx

[gmc920 in reply to Seasun36-uk]

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!

xx Gina

[Seasun36-uk in reply to gmc920]

You too! Xx

[mrstadpole]

Lovely photo of you and your husband Linda.The weather looks glorious.Hope today went well at the Chemo suite.Such wonderful nurses there.

Love Ann xx

[Seasun36-uk]

Thanks Ann! Yes all went well & I saw some of the nurses I remembered, which was lovely. They coped in quite cramped conditions, don’t they.

The sunshine is Israel was lovely 🔆 approx 25-30C.

Hope all is well with you Ann. Lx

[mrstadpole in reply to Seasun36-uk]

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

[Coldethyl]

Hope the chemo isn’t too bad and kicks the bugger into touch xxx

[Seasun36-uk in reply to Coldethyl]

Thanks so much, let’s hope so. Hope you are doing well? X

[Coldethyl in reply to Seasun36-uk]

Cancer front is ok but I’ve had a tough year with adhesions from the surgery - let’s hope for a better year in 2020 for us all x

[Seasun36-uk in reply to Coldethyl]

Yes, definitely! ❣️

[Alifit]

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!!

Wishing you lots of love, Ali x

[Seasun36-uk in reply to Alifit]

Thanks Ali x

Hope you are coping ok, look forward to your update xx

[delia2]

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!

[Seasun36-uk]

Thanks Delia, good advice xx

[Petrolhead]

Fab photo. Good luck with the treatment.

Best wishes

Fay

[Seasun36-uk in reply to Petrolhead]

Thank you Fay x

[ShropshireJo]

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.

In the meantime, lots of love Jo 🌺🌼🌸🌻🌹

[Seasun36-uk in reply to ShropshireJo]

Hi Jo,

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.

Look forward to an update, when you are up to it.

Linda xx 🌻🌻

[Katiebairdie]

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.

Hope your managing the side effects (if any).

Best wishes, Kathy

[Seasun36-uk in reply to Katiebairdie]

Hi Kathy,

Thanks for your good wishes & advice on hair dryers etc. (These things matter don’t they?).

How are you? It seems a while since that conference at Reading Uni, doesn’t it? Hope things are going ok for you & your hub.

Linda xx

[Seasun36-uk in reply to Katiebairdie]

Yes, I love the sea & sunshine! 🔆🌊 Even frost, if it’s sunny! ❄️🔆

[Katiebairdie]

Hello again,

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.

Kathy x

[Maxjor]

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.

Hugs,

Judy

[Seasun36-uk in reply to Maxjor]

Thanks Judy.

Hope things are going well for you on your trial xx

[Hidden]

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

[Seasun36-uk]

All really useful info; thanks Suzuki & best wishes for the rest of your treatment x