Diagnosed carcino sarcoma

Hi Menorca456, lovely to hear from you. You can ask me anything! The only thing to remember is it’s just my experience or view - everyone has their own experience but I know I have found by reading lots, it can give a backdrop to work from, which you can then add your experience to.

The chemotherapy I had was cisplatin and paclitaxel. It took 4 hours to drip through, but generally I was there for the best part of 6 hours - I had meds first - steroids + antihistamine, then the bags need changing etc. I took water, snacks, my iPad and kindle - it was a nice few hours, not least as I was the only member of my household seeing people in a different building!

After my first treatment (I had 6 cycles three weeks apart) which I had as an in patient because I had become very ill, I had a port fitted by the brilliant procedures team (whom I’d got to know from the stomach drains for ascites). It’s completely brilliant and I’d definitely recommend them - it’s a 10 minute procedure but means you can have bloods taken, all your chemo etc through the port, which stops multiple attempts to get access into a vein, which when you are feeling poorly is a bit hard going.

on chemo day, I got a massive dose of steroids - they are fantastic and made me feel wonderful - it was bad news for my bank balance though - midnight shopping became a thing - my daughter threatened to confiscate my iPad on chemo days! The steroids meant I felt well on the day, and for a day or two after. I then had maybe 3-4 days, not longer than that, when I did have some deep aches in my legs, and didn’t feel great. I tended to just rest on those days - lots of box sets, reading etc.

the anti sickness tablets were very good. I was very sick around my first chemo, but I am certain that was my cancer as I’d been very sick before the chemo started. When the chemo started working, with the anti sickness tablets, I didn’t feel sick and had a good appetite.

I did lose my hair, and they did tell me I would ( I think the paclitaxel is responsible for that). I know from reading other people’s stories that this is often a big thing. For me, it wasn’t. I didn’t know that’s how I’d feel about it, but after my first chemo, my daughter gave me a buzz cut in the garden, and I loved it! It felt very liberating to me - but I fully know this often isn’t so for others.  I got lots of little hats, scarves and a wig. When my hair did come out, I wasn’t as keen on the shiny bald look, but soon got used to it, and didn’t bother covering up in the house or garden and I was comfortable with that. I didn’t even have any discussions about cold caps, I think because I became very ill and had the chemo brought forward, it just wasn’t on anyone’s mind, so I can’t comment except to say, if it’s important to you, do ask about it and get all the facts, then you can make your own decision. Losing my eyelashes and eyebrows was harder for me, but that didn’t happen until after 3 or 4 cycles of chemo, and I just used make up which was pretty good. And as soon as the chemo stopped, hair everywhere started growing back - currently I am contemplating my first hairdressers trip as I look like a poodle!

So, in summary (I do go on!) for me, having the chemo didn’t bother at all on the day or for a day or two after, then I just had a few days of feeling a bit rough. For me, the chemo was brilliant, as it stopped me feeling so ill with my cancer and meant I could enjoy my days again, which has been wonderful.

I hope this helps a bit. If there is anything else you want to know from my experience, or want to talk more about any aspect of it, please just shout. I always found the med teams full of answers, and I’d prepare for my consultations in advance with a list of questions in my little book, I made myself ask every question, and wrote down all the answers because I knew I wouldn’t remember some of the details. No question or request is stupid - it’s about you getting what you need.

Good luck on Wednesday - let me know how you get on - I will be sending you lots of positive vibes!

GoW xx

Thank you and will do Barb.

Hi there and thank you GrapesofWrath 

Still as uplifting as ever and this has put my mind at ease that it will be doable even though I know that each person will have a different experience.

I have written down lots of questions and will be ready to fire away on Wednesday.

will keep you updated 

take care. x

Hi Menorca, just a correction - it was carboplatin together with paclitaxel I had - not cisplatin. That’s why I write everything down!

Good luck tomorrow xx

Hi . Will be thinking of you today.

Hugs, Barb xx 

Hi GrapesofWrath

• All went well today.Consultant said he would consider me cured but will offer me 4 cycles of carboplatin as a precaution followed by the relevant check ups.I am so relieved and he said It shouldn’t make me lose my hair so that’s a bonus.I have been able to drive again this week and have my daily swim so feeling upbeat but guess it will take a while to forget all the what ifs and switch off.
• I hope you continue to feel well

That’s absolutely brilliant news - you can’t get better than that! Best of luck with the carboplatin, I hope it’s plain sailing for you.

Thats  such a relief for you and your family - big celebrations in order!

xx

Hi Menorca. Really good to hear your positive news. My consultant is calling my mass a cancerous fibroid. I've googled (I know) and everything says fibroids are always benign. If they are cancerous it's leiomyosarcoma. It's very rare but it sounds very like your cancer. I haven't seen my consultant and only spoke to her on the phone when she rang to tell me that the Christie hospital have agreed with her that the fibroid is cancerous. My mind is in overdrive now. My surgery should have been yesterday but had to be cancelled as my blood sugar levels are too high. I'm low carbing like crazy to get them down. My surgery is now booked for the 13th July.

Take care, Deb