Just diagnosed

Hi Jax , sorry to find yourself here . I was diagnosed in July , if you click on my profile you can read my story.

I had major abdominal surgery first and have just completed my 2/6 session of Chemo. I am on Carbo/Paxil . So far (compared to the surgery) I have tolerated the chemo extremely well , i know I'm only on cycle 2 , but the side effects have been really well managed. You get loads of drugs to take after chemo to help with side effects and they (for me) so far have been tolerable. 

I'd be interested in how the other ladies have taken to the chemo as like I said I'm new to this . 

By day 10 of the 1st cycle I shaved my hair to a no 4 as it was falling out in handfulls , it was annoying so it didn't bother me.

I hope I've been of some help to you. Keep strong.

Dear Jax 53, I am so sorry to welcome you to this club!  Too right, no one wants to be in it.  I was also diagnosed in July, and I can’t fault the medical help I have had so far.  Because my tumour was so large, I had the surgery first (removed the tumour, uterus/cervix, ovaries, Fallopian tubes, omentum and 12 lymph glands.  I believe that’s pretty standard, to my limited knowledge.  I can’t speak about chemotherapy as my first one will be in around 2 weeks time.  I am still getting over the surgery, but I saw the team at the Royal Marsden yesterday; they were great, very honest and upfront.  They don’t dress it up, but equally, they assured me of help with all the side effects, and said that individual reaction to the treatment is very varied…it’s really true that some people actually tolerate it quite well, others struggle more.  It seems if it is really awful, they can reduce the dose, adjust timing of treatments, and generally help as much as possible.  And it is temporary, if a bit of a long road, and your hair will grow back.  If you can, ask for the ‘cold cap’, which helps some women quite a lot.  It’s true it doesn’t help everyone, and some find it hard to tolerate.

Stay strong, be positive when you are able, but when you feel like you are on the floor, admit it to yourself, and share it with those you trust, very close friends etc.  I thought I was literally months from death when I first heard my diagnosis, but since then I have learned a lot more about the disease, medical advances, and realised I have lots of hope and every chance of cure and recovery.  I am Stage 2a.

I wish you every blessing, and a full recovery as you go through treatment.  

SueB.   Xxx

Hi Sue, thanks so much for your message. It was really lovely to hear back from someone in the same boat.

I'll take on board all you've said. Great advice, thank you. I just wanted to ask what "cold cap" means?

Wishing you all the very best for your up and coming chemo 

Jax xx

Hello again, and thank you for good wishes.  The ‘cold cap’ is some kind of head gear device (I haven’t actually seen it yet) that keeps your scalp extremely cold; for some reason this often protects against a lot of the hair loss.  It works better for some than others, and some people apparently find it quite uncomfortable.  No guarantees, but it can help.  Ask about it when you go for treatment.  

Take care, 

Sue xx

Hello, I had cold cap last year.  I had long thick hair.  The process adds an additional 3 hours on to the overall  treatment time.  The scalp is kept very cold throughout.  My hair started coming out  after my 2nd chemo cycle but I persevered during my next 6 chemo sessions. My hair came out in handfuls which was very upsetting.  Halfway through I started wearing turban style headwear.  Whilst I did retain some of my hair, the top of my scalp had very little.  I hope it works for you, anything is worth trying.  What I hadn’t  realised though is that it’s not just the hair on your head that you lose, it’s from everywhere

Hi Jax

i had cold cap last year and sent my reply by mistake to Sue, not you.  It’s below 

Hi Jax , my oncologist told me , with the chemo plan I'm on , 6 cycles Paxil/carbo , that it would give gauranteed hair loss and that s cold cap wouldn't be successful . Another friend of a friend went through the same regime and tried a cold cap but eventually lost her hair too.

So I would have a frank discussion with your Onco and see what their views are.

Hope I haven't made things more confusing.

Losing hair elsewhere is one of the pluses  I'm 43 and stated getting horrible little white hairs on my chin and jaw line ..... I'm now beautifully smooth ! 

The other plus is ..... No pubes

Thanks Sue, I'll ask about it xx

• Thanks so much. Good info to know. Sounds like it's not particularly effective and the hours extra per session sounds a lot. I'll speak to the team once I'm allocated a nurse specialist