Morning Ladies

[Supergran38]

Hi started on Carboplatin/Caelyx January 2018 (6 cycles).

First cycle went ok, second one knocked me off my feet. Oncologist decided to reduce treatment by 25% for third cycle to help me function. Also arranged for me to have magnesium and calcium infusions as these were very low.

Went to The Christie yesterday for bloods prior to fourth treatment Thursday. Yet again calcium, potassium and magnesium levels very low, so treatment has been put back a week whilst I take supplements to boost my levels. Consultants thinks it’s the Carboplatin that’s to blame, so is talking about stopping the Carboplatin and just having the Caelyx.

Just wondered if any of you ladies have been down this path, and did it make a difference?

Thanks for any help. 😀

[Lindaura]

So sorry about your difficulties. I have never been on Caelyx, but I know that the Carboplatin depletes our mineral levels in some cases very extremely.

However, if you are platinum sensitive, it is the very best cancer killer, responsible for about 90% of the work of your chemo.

When I was on it, I too had to have infusions and take supplements to boost my levels, even several blood transfusions, but never missed a Chemo session.

How to solve this without losing your Chemo sessions would be to take regular Sachets of Magnesium and Potassium (these must be prescribed) with bloods taken every week to monitor you so you don't take too much.

I had a nurse practitioner come to my house every week to clean my PICC line, so she took the bloods for me or if you are healthy enough, you can arrange this at your GPs. Your CNS nurse can fill out the lab forms when you go for your Chemo infusion.

In fact, she is the best person to talk to about this problem.

If your cancer is on the retreat, don't stop the Carbo!

That's my opinion anyway.

Best of luck,

Laura

PS: I have heard that Caelyx can be very hard on your body, but never had it myself.

[Supergran38 in reply to Lindaura]

Hi Laura

Thanks so much for your reply and advice.

Been given two weeks magnesium tablets, so hopefully they will boost the levels.

Back for more bloods next Tuesday and fingers crossed chemo on Thursday.

I really don’t want to come off carboplatin and will put this to the oncologist next month.

Thanks once again. X

[Lindaura in reply to Supergran38]

You sound pretty optimistic, so that's great. I found that the tablets did not help and was prescribed this: Magnaspartate 243 mg Oral powder Sachets (Magnesium 10 mmol) KoRa Healthcare.

It seems to work and I am still taking them, as the Carbo effect on Magnesium can last for several months..

best wishes,

Laura

[Supergran38 in reply to Lindaura]

Thanks Laura

Have made a note of the sachets.

Take care x

[Mrsf49]

Hi, I'm on day 10 of my second Caelyx, I'm regarded platinum resistant so couldn't have carbo, my first Caelyx last month was reduced to 85% but i still had pretty much the same side effects as carbo/taxol, I also had a bowel obstruction which was very worrying and the oncologist put down to maybe the anti sickness on day of chemo. I haven't been too bad with this second one but living on my nerves every day because of the bowel obstruction so still holding my breath.

I'm told that this Caelyx takes about three infusions before there are any benefits and it can be quite harsh I think they call it the red Devil so I'm thinking will it get worse with the build up each month. My oncologis says when I've had a bad time, no pain no gain so I worry when it does knock me about and if I don't feel too bad I worry it's not working. Lol I just worry.

Oh by the the way I was also pneutropenic and had to have a course of injections this time.

Good luck. We can do this.

Fiona x

[Supergran38 in reply to Mrsf49]

Hi Fiona

Thanks so much for your reply.

I’ve heard that Caelyx is called the Red Devil!

This is my fourth line of chemo and have never felt so battered! 🙁

I really want to finish all the treatment to give myself a good shot of staying here - got too much too to do and see! Xxx

[lorraine71-Australia]

HI,I had Caelyx only 6 treatments over 6 months with good results ,it was hard at times with a rush, toe nails went black and dry skin but I managed it with the help of my team and advice from our ladies on this site you can always ask for advice here..Take care Lorraine xx

[Supergran38 in reply to lorraine71-Australia]

Hi Lorraine

Had some good advice this morning.

Hopefully the next treatment goes ahead next Thursday and have decided to speak to the oncologist next month to see if I can stay on Carboplatin and Caelyx. Want to give it a good attempt.

Hope you’re feeling well.

Thanks again x

[lorraine71-Australia in reply to Supergran38]

Hi, As I mentioned I had single Caelyx that was my 3rd line treatment, 5th line was Caebo/Caelyx with very good results I had 8 treatment my 125 had gone up to 1300 it came down to 47, the side effect were not as bad as single Caelyx .

I was about to go on a lower dose of Caelyx as maintenance, Caelyx has proven to be the best chemo for me but as we know it's different for each person.

My oncologist suggested a trial drug so I went of chemo to do this trial it prove to be the hardest treatment so far, my 125 has now gone back up a to 320 , I've been waiting to get back on chemo, our cancer clinic is so busy I've had to wait 4 weeks and to day I go in to have Carbo/Caelyx again.

My history is as soon as I go off chemo it starts up again, to day will be my 6th treatment in 4 years but when I was diagnosed we were told that I would not see the year out, it's not always been easy and some time I wonder if I can continue but as my oncologist said she is seeing people survive longer with new treatments.

I hope if you do go back on Carbo/ Caelyx it gives you good results if not I'm sure your team will have options for you..Take care Lorraine xx

[Seasun36-uk]

Hi Supergran, (good name!), I know chemo plays havoc with our appetite/taste, but how about looking up foods rich in those minerals - mainly fruit (berries) & veg (green leafy) I think. I really do believe our bodies obtain more from fresh natural food than from supplements, although I know at times they are necessary. When I was on chemo, for some reason I wanted tinned fruit! But I really think it did me good! Linda xx

[Supergran38 in reply to Seasun36-uk]

Hi Linda

Thanks for your reply.

I agree it’s best to eat as well as possible. Will try to stock up on berries and see if that helps.

Do have a good diet and have cut out all processed foods.

Thanks for your help x