Got my results at last

Hi, I finally got my results, and I have a malignant epithelial endometrioid tumour, stage 3c. I'd expected something like this, but it was hard actually being told it was malignant. I have to see an Oncologist and then start chemo in about a month. They want me to have combined chemotherapy, but the details will be discussed with the Oncologist. Now I know what I'm up against, I was wondering if anyone had any tips on how to cope with it, and what side effects I'm likely to experience. If, as I suspect, I'm going to lose my hair, is it best to get a wig before it starts falling out??

Love Sally XX

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  • HI Sally, I,ve just had my first session of chemo carbo/taxol after being diagnosed with stage 2b Ive had my opp 8wks ago tumour fully removed I have bought a wig and have had my hair cut into the style of my wig all I can say from my experience so far is that the first three days all i wanted to do was sleep and felt very muggy headed not being able to concentrate on anything,and i have tingley fingers and toes it does pass and you soon start to feel normal again next time I have a session i think i,m just going to plan not to do anything those first days good luck and rest alot xxx

  • Hi, Thanks a lot for that. Did you feel sick?? This is one thing that has been worrying me.

    Sally xx

  • Hi Sally

    Itook anti sickness and was ,nt sick at all

    dedewhite xx

  • Hi Sally

    A good tip is to ask for and wear the Ice cap.My experience was Its not that bad, just" burns "a bit for first 10 mins but hey, after 6 sessions of Carbo/Pacltitaxel (just finished) I still have most of my hair , although it has thinned.If you are not offered it ASK for it and try it. If you cant get on with it then youve tried but it works for about 30% of women. I was lucky!I did get a wig early on just in case from the best place which is Trendco in kensington but you can go online, get it cut by some one who has done |Trevor Sorbies "My new hair " course. Google it. They are sooo helpful.

    I did not hand on heart experience any feelings of nausea whatsoever and put that down to the excellent anti sickness drugs they put into you 1st before the chemo. Dont be scared, its so do oable! I was just like you.Also a good tip is get a Port fitted, a tiny device that is inserted into the upper chest for them to administer the chemo. (under local anaesthetic) Otherwise some people can experience problems with their veins and chemo can cause a hardening of the veins. Discuss all this with your Oncologist and support Nurse

    Wishing you the very best of luck and whatever you decide will be right for you

    Lindy4

  • Hi Lindy,

    Thanks so much for the information. There's so much to take in at the moment. I'll ask about the port when I see the Oncologist.

    Take care, Sally xx

  • Hi Sally

    My 7th and final chemo session is next week - I had 4 before surgery and 3 after. I am on carbo and taxol.

    Firstly don't worry about nausea, the anti emetics are brilliant I had no sickness at all - mine was called ondansetron.

    I was on 3 week cycles which meant a good day immediately after the chemo then 4 or 5 bad days where the tiredness is overwhelming (whoozy feeling) then a few days when it gets gradually better followed by about 10 good days - my advice is sit with a calendar and mark out the good and bad days so that you know what to expect and when. Also week 2 is when your immune system is low so be extra careful then, I gave only 'metaphorical' hugs to people and used masses of anti-bacterial gel. Deal with side-effects if and when they occur, I was given a list of stuff like mouth ulcers which didn't happen and strange food taste which did ( I switched from wine to lager for the first half of chemo because the sugar notes in wine made it taste horrible!). What I'm trying to say is that you will cope but in your own individual way. As far as hair loss is concerned, there's more to worry about - if you want the ice cap go for it but in my sessions the baldies outnumbered the ice cap wearers by 10 - 1. Cut your hair short to start with, I looked at my worst when it was thinning at a pace and I had long straggly wisps. I bought a wig but have hardly worn it because there are masses of wonderful hats, scarves and turbans out there but also because my head feels so lovely and fresh - showers are a joy!!

    On chemo days I am given infusions of steroids, anti-histamines, and ranitidine (for stomach) as well as the carbo, the taxol and the anti-emetics so talk to your nurses about everything - for example I was told don't take steroids after about 2pm or you'll not sleep.

    I've rambled on for long enough but do keep asking if stuff concerns you, I know I was just like you last November. love & hugs Janbeegee

  • Hi,

    Thanks so much for all that, it has reassured me loads. There's so much to take in at the moment, and I want to be as prepared as I can when I see the Oncologist hopefully next week.

    Take care,

    Sally xx

  • Hi Sally, I was diagnosed 3C only after my operation (for supposedly benign tumour!) in Aug 2009 and was told I'd had 'adhesions' removed from bowel, omentum and peritoneum. Had 6 sessions of carbo/taxol. I lost my hair 2 weeks after 1st session, but I asked my husband to shave my head before it all fell out. Made a change to me shaving his hair!! I also got fitted for a wig before I lost my hair so was all prepared. It fitted great and everyone said it really suited me and some didn't even realise it was a wig. I got through my chemo without many side affects, no sickness or mouth ulcers, but horrid taste in my mouth which lasted a few days from day 3 after chemo. Also had the tingling in fingers and toes, which lasted for some months after end of chemo. I didn't get any infections either, even when the whole family was suffering from colds and flu. Hair grew back lovely and soft and is in good condition now.

    I've been in remission for 15 months since end of chemo but back for follow-up next week. I had a couple of suspicious lymph nodes when I had a CT scan in Jan so am really anxious to find out if they have disappeared, or have grown (REALLY HOPE NOT). I've been left with bowel problems and will need to take laxatives (Movicol sachets) daily probably for ever, but I've always had bowel (IBS) problems so am used to this! Don't worry about the chemo - I'm sure you'll cope ok. xxxxxxxxxxx Colette

  • Hi Colette,

    Thanks for that. I was going to get my head shaved before hand, so I feel more in control of it rather than it being in control of me. I was also planning on getting a wig before it starts, so I am prepared, probably only for when I went out.

    Good luck at your follow up, I'll keep my fingers crossed.

    Take care, Sally xx

  • Hi Sally, my mum was diagnosed Nov 2010, stage 3c too.

    She began taxol and carboplatin chemo on a weekly basis, having if I remember correctly the carboplatin every 3 weeks. Her oncologist thought giving smaller doses more frequently would mean less side effects and for her it was certainly true;for the first three cycles (9weeks in total) she was amazing! Full of energy, you would never have known she was undergoing treatment and her hair did not fall. It did start to thin towards the end of the 3rd cycle, before her surgery, so she decided to have it cut and bought some wigs, one short and one long so depending on her mood she could decide what felt best.

    She also had a port fitted before chemo started as her veins weren't up to scratch and that made administering the chemo so much easier.

    She underwent her surgery which was a great success, though she ended up with a temporary ileostomy bag as the surgeon wanted to be sure he'd removed enough of the affected bowel. 9 more weeks of chemo followed and she finished the beginning of April, with reversal of her bag booked for May. A warning, the chemo that followed surgery was much tougher and she did experience bad reflux indigestion and some tingling in her feet but her chemo was adjusted accordingly and the support drugs they gave her have really helped. She had the cold cap for every dose and whether it was that or the little and often approach, has still 70% of her hair which is amazing.

    Stay positive, you'll get there! It's been a long 6 months but fingers crossed mum is on the other side now showing it can be done!!

    Go for it and good luck, Jess X

  • Hi Jess, Thanks for all that. It's good to hear she's through the chemo, and I wish her all the best for her ileostomy reversal next month. Have a Good Easter. Sally XX

  • Had oc 35 years ago but was treated the old way with radiotherapy. had breast cancer 10 years ago prob due to 25 years on HRT for this I had chemo and found sea sickness arm bands fantastic after suffering dreadful sickness for first three treatments. Aloe vera helps when youre losing your hair and a duvet over your mattress is like heaven for bone pain.

    Good luck and lots of love

    Margie11x

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