Newbie

[Leannie]

Good Morning (at least it is morning here in Florida!)

I am a newbie here! 2c low grade serous OC was my diagnosis. I am supposed to start chemo in January but after research do not feel this is the best option. I am planning on having the BRCA testing in about a week. I look forward to learning from all of you an appreciate this forum to gain information.

[January-2016-UK]

Hello Leannie, I don't have any experience of low grade but there are a number of ladies in this forum who do. I'm sure they'll be along shortly; I just wanted to say hello and welcome to our forum!

[Leannie in reply to January-2016-UK]

Thank you !

[rareoldme]

Hi Leannie,

I’m kind of a newbie too. I’ve not posted anything yet and this is my first reply to anyone. I’m curious to know why you don’t think chemo is the best option? What have you read? I know it’s scary but don’t we have to trust what they say?

It’s evening here in England, cold and dark!

[Nicky100 in reply to rareoldme]

Hi rareold me,

Welcome to the forum here and I hope you are doing OK? The ladies here are truly wonderful so you will be in good, kind hands. There is also loads of information on here to read. You must be a bit shocked still I imagine so I hope we can help you somehow and if you have questions you can also private email people.

Love Nicky

[Leannie in reply to rareoldme]

In the research I've done it says it is "chemo resistant" then some other sites said something along the same lines ...Will have to check my internet history! It sounds as if there isn't many options available to treating and this is the general protocol... I guess options are limited....I have a lot to learn haven't had my diagnosis a whole week yet!

[Nicky100]

Hi Leannie,

Welcome to our odd ‘family’ and sorry you find yourself here. This forum is however, full of wonderful, kind and inspirational women who can help and support you. I had not found it when I was first diagnosed, so at least you have found it early.

I’m going to be honest in saying that I’m concerned about your decision not to have chemo? What specific research have you looked at?

If you consultants are recommending chemo, I would strongly suggest that you take their advice, as not having it places you at greater risk along the line. And also, if you do NOT have chemo, then you will not be elligble for other excellent drugs in the future like PARP inhibitors. They won’t give them to you if you have not had chemo. And they are out best chance of success at this time.

I did not want chemo either and did all I could to not have it but decided I had to in the end.

Please do think very carefully. I would be interested to learn about the research papers you have read?

I wish you the best of luck in any case.

Nicky xx

[Leannie in reply to Nicky100]

Hmm will have to look that up again. Had a very long day today (my first day back to work since the hysterectomy. Thanks for all of the good information as I begin this challenge! Gratefully, Leannie

[Babbey]

Morning Leannie

I’m also low grade. Stage 3c. I only did three rounds of chemo then stopped. Not a lot of evidence it responds as positively as high grade, however chemo seems to be the route forward for many low graders. For me it was a personal decision and supported by my oncologist. Am on letrozole now which is a daily oral hormone blocker. Am free if you have any questions!!

[Leannie in reply to Babbey]

Are you in the US?

[Babbey in reply to Leannie]

Canada

[thomas62]

Hi Leannie,

I am low grade 3b. now 4 years come January from my radical debulking op. I finished first line chemo standard carboplatin and pacletaxol in August last. Yes low graders don't tend to respond to chemo as well as high grade but it doesn't mean there isn't any response. My first scan post chemo put me as stable (when previously my cancer had been moving) and also with a little shrinkage. My CA128 prior to chemo was 48 and again at first scan was down to 28. Also not having a line of chemo means you can't participate in trails as it is one of the criteria for entry to a trial. (I say this but unsure if it is always the case). I was on Letrozole (a hormone inhibitor) prior to chemo for abt. 15/18 months and was stable. Have you had your cells tested to see if yours are oestrogen positive (mine are strongly and diffusely oestrogen positive/progesterone negative). Low graders do not have a BRAC1 or BRAC2 problem. Mine were genetically tested and this was the case - no BRAC1/2.

Hope this is helpful to you leannie.

Best wishes. Gwen x

[Leannie in reply to thomas62]

I am going to have those tests done next week I think. Thank you for letting me know the ins and outs (of trials etc..) as I need to know the rules etc....

[Lily-Anne]

I was diagnosed stage 1C and didn’t fancy chemo either. After my first dose my kidney function was reduced. I was NED the chemo was precautionary and my oncologist gave me the option so I decided not to continue. Three years later I recurred. I had surgery again and this time chemo but had a bad time which resulted in my stopping after three doses. Fast forward two more years and I’ve just finished chemo for a second recurrence.

I am quite anti chemo even so. I would say research is the key before you decide. Chemo isn’t a cure but it can in some cases rein in the spread.

LA

[Leannie in reply to Lily-Anne]

Thank you for responding. Lots to think about !!