PPC - back on the merry go round

[Julie40]

Hi all. I haven't posted in a while but always use the site on a regular basis to give me hope and information so thank you ladies.

My biggest fear was whether I would recognise the symptons and know if my cancer was back. Unfortunately this has been proven - the beast is back and although I did spot the signs doesn't really make me feel any better ! I had bloating , abdominal pain and feeling very tired so had a trip to the clinic and my ca125 was raised and although within normal range they organised a scan and confirmed it was back. The things I am thankful for is that I was able to go on an amazing trip to South Africa (recurrence Conf day after I returned) and then I was due to go in the following week for my double mastectomy and that didn't go ahead. I don't think I could have faced chemo whilst recovering from that op. It was tough enough dealing with chemo after my last debulking surgery.

I was given the choice of starting treatment or enjoying rest of the summer with my family and revisit again in Sept. I chose the latter and have another scan and follow up scheduled for Sept. Im getting carbo/taxol chemo and parp inhibitors. I've had a wonderful year off from my last treatment and really made the best of my freedom but the dread of chemo is starting to creep in again. I'm also worried that I have not had that long from my last treatment (1 year) and that recurrences can be shorter every time.

Any positive stories about long breaks after 2nd line recurrences welcome. Also anyone been treated with parp inhibitors ?

Apologies about the long winded post.

Julie xo

[thesilent1]

Hi Julie, glad to see you enjoying another trip away with Leah. I know nothing about Parp inhibitors so can't help I'm afraid. I know what you mean about fear of starting chemo again, I pretty much feel the same. Back for scan on 14 Sep. I've been a year on the wait and watch programme now. I know some ladies had replied to me stating that they had a longer remission after 2nd line treatment than after their 1st. I cling on to the hope. Hope to see you soon. Enjoy rest of your hols with Leah. Ann xo

[Julie40 in reply to thesilent1]

You've managed really well on watch and wait. I just wasn't ready mentally or physically to start chemo so really glad he gave me the option. I decided to make the best of the time I feel good before getting started again. Squeeze in as many holidays as I can just following doctors orders lol

Would be great to catch up before your scan. Will send you a message on FB to make plans. Positive stories about 2nd line is exactly what I need to hear. Feeling a bit worried about that.

Love and hugs xo

[Katmal-UK]

hi Julie. I have stage 3 oc. I have had 2 recurrences, 1st remission after surgery and chemo was 4.5 years, second remission was 1.5 and currently im in a third remission and on parp inhibitor trial and so far this remission is 2 years this month. Do you know what parp inhibitor you will be on. I'm on Olaparib. Hardly any side effects and working full time. I wish you well for treatment xx

[Julie40 in reply to Katmal-UK]

What a positive story. You had a good break first time. Thank you for replying. I don't know exactly what parp it will be. We are meeting on 25 Sep to discuss it all. I said I would be happy to go on a trial. That's great you are still working and little side effects. Superwoman ! I rushed back after last chemo so decided to take a break from work for 6 weeks before I start treatment again. Feels great.

Do you have any recommendations for daily living or complimentary therapies ?

I live a reasonably healthy life and get a bit of exercise but nothing major. I could pribsblt do better but there are just so many conflicting stories out there about what is good for you.

Wishing you continued healing xo

[Katmal-UK in reply to Julie40]

Hi Julie. Not Superwoman but just stubborn I think lol and determined to live life. No recommendations for daily living, I just live as I always have done to be honest, eat healthily, carry on doing everything I always have done, working full time even when I could so easily stay in bed feeling sorry for myself. My GP commented last time that it was the closest he'd seen me to becoming depressed and told my husband that he believes it's my strength of character that keeps me going. I have the BRAC2 gene so I am unsure whether that makes a difference in how I react to chemo and the Olaparib.

I wish you well, please keep us updated.

Kathy xx

[Julie40 in reply to Katmal-UK]

I'm a firsty chic too and believe it's what helped me get this far. I had a very poor prognosis last year but gave it my all. I went to my doctor couple weeks back and asked him for a sick line for the first time. He nearly gave me a round of applause for finally taking a break. Everyone needs different things to help them through this. I liked the routine of work but really am enjoying the freedom right now and my aching joints haven't been half as bad in the past few weeks.

I'm brca1 and hoping for positive results with parp. There seems to be positive feedback from trials.

Thanks for your response. Take care xo

[Jo-Bo]

hi Julie Sorry to hear you have a recurrence. I too waited until the end of my family holiday before starting again. Can I ask; which parp are you on? Is it a trial?

[Julie40 in reply to Jo-Bo]

Hi. I don't know as yet. I preferred not to go into it at the time. We are meeting again on the 25 Sep to discuss the plan. The only bit I came away with was platinum chemo again with parp inhibitors. I'm brca1 so don't know if there is a specific parp for that.

When did you start treatment again and is this your combo ?

Xo

[Jo-Bo in reply to Julie40]

hi Julie thanks for your reply. I started chemo on 10 th August. I am on carbo/ caylex. As it has been only 8 months since my last cycle on carbo/taxon and I had Avastin they decided to try something else. Jo

[Jo-Bo in reply to Jo-Bo]

Oh and I am brac 1 and was hoping for a parp but that doesn't seem open to me.

[Julie40 in reply to Jo-Bo]

Where are you being treated ? I've a friend here in N.Ireland and was told it isn't available yet. She's also BRCA.

[Julie40 in reply to Jo-Bo]

He mentioned Avastin to me as an option but wants to try this combo first. Praying he is right.

I've met ladies who say calyex has been easier to manage in terms of side effects. Do you find that ? Xo

[jan50]

Hi Julie, really sorry to hear that you have a recurrence- I' in the same boat- start carbo/ caelyx next week for recurrence. I am also BRCA 1 and was hoping for a parp as the research is showing very good results, particularly for people with BRCA gene mutations, but my onc has informed me that oliparib is not available at the present time, ( although there may be another trial coming up soon), can I ask what parp you will be on and is it a trial? Enjoy the rest of the summer and hopefully we will have some nice weather before you start back on the treatment

love

Jan x

[Julie40 in reply to jan50]

Hi Jan. sorry to hear you're also back on treatment.

I'm not sure what parp it will be but find out in Sep and post again. When he gave me the option to delay for a bit I happily put my head in the sand as wanted a break yo prepare. I've had to escape the awful N.I weather so I'm currently in Spain on a break with my youngest daughter who's 11 in the subshine.

Will post again when I know details xo

[Btte]

Hi Julie sorry to hear your news, but glad to hear you are getting plenty of vit c and sunshine so you will be ready and able for your next round. I have had 3 rounds in 3 years and my old body is still coping ok. I am due back for scan and waiting to see whats in store mine too is back in lung and peritneum, are you stillbeing treated at the Christie ?, we may get to meet up for that cup of coffee. Love Bridie xx

[Julie40 in reply to Btte]

Hi Bridie lovely to hear from you again. Yes still at the Christie. I'm there on 21 & 25 Sep for starters then will find out if I'm weekly or not. Would love to get that coffee.

Pleased to hear you're still coping well. Hopefully we can meet up sometime soon xo

[Lucidalil]

Hi Julie

Sorry to here it's back again , I am on a parp - Olaparib as I am BRCA 1. I was lucky enough to get on it 4 weeks after my carbo taxol chemo finished . my geneticist knew i had been turned down for another trial as i had to have some intestine removed when I had my debulking op so put me forward for this as I met the strict criteria . I have been on it for almost 2 years and no reoccurrence as yet touchwood . Side effects aren't too bad so no complaints from me and ct scans every 12 weeks. I live relatively close to both Royal MArsden Hospitals so very lucky - both my daughters have tested positive for BRCA 1 so they are at RMH also. 😄

[Julie40 in reply to Lucidalil]

Hi. That sounds very promising. Really pleased you're doing so well on it and side effects are manageable. We really need a breakthrough for this disease.

My daughter has also tested positive for brca1. She's 23 and is still taking it all in. A lot to think about at that age. I'm the first person in my family to be tested for it. There are loads of others in the system.

Take care xo

[Lucidalil]

Hi Julie, sorry to hear about your daughter testing positive. I think i found that harder to deal with than my cancer. My 26yr old tested positive first early last year then my 20year old 3 months later. All my extended family have been tested and luckily no other line carry the gene. My older daughter had risk reducing surgery in May and she is doing well both physically and mentally , my younger daughter is also going to have the surgery she is mid way through all the testing at present. I think they came to the decision after seeing me go through breast cancer when j was 36 and we thought thats it i have survived that one then 14 years later boom 3c ovarian. I think it was a bit of a no brainer for them after having cancer wrapped round them for years.

They are also going to have their ovaries removed later. After losing my mum aged 40 and my great gran to breast cancer we thought it may be genetic many years ago.

My geneticist thinks My gran survived due to having a total hysterectomy in her 20's , she lived until aged 96 - she died a month before my ovarian diagnosis so apart from the obvious we do have some longevity in the genes lol

[Julie40 in reply to Lucidalil]

You really have a handful there with genetics ! You're right about the children testing positive. It really affected me. I still struggle to deal with it and only thing that keeps me sane is the fact that they can make decisions to reduce risks. I've come across families in your position but feels strange and I'm thankful that there is nothing prior to me that alerted us to this. I wish you and your daughters we'll. I'ts great they are dealing with it. My own daughter has blocked it out a bit x

[Lucidalil in reply to Julie40]

Hi Julie ,

I am sure your daughter will deal with it when she is ready - they are so young and should be enjoying everything that life brings instead of making these sort of decisions . My older daughter decided quickly as both me and mum got breast cancer in our mid thirties and she thought she wAs getting close to that age (she was 27 on Saturday ) she said she would rather go through the risk reducing surgery than have less options with cancer and chemo but everyone will make there own choices . I had a bit of good news yesterday I had my 12 week scan results and it is clear. Although it is quite stressful having the ct scans done regularly ( with the trial) it's good to know that things would be found quickly .

Sending big hugs and positive thoughts to you and your family .

Enjoy your holiday to Sorrento.

Love Carolyn

[Julie40 in reply to Lucidalil]

Thank you Carolyn. Packing tomorrow for our trip. Hoping to forget cancer for a whole week.

It's the toughest part of it all knowing our kids have to think about this never mind make big decisions. Take care xo

[Hertsmum]

Sorry to hear it's back, I've read your posts often and you are so positive and I'm glad you've enjoyed the 'year off'. Enjoy the sunshine it's non-stop rain here!

I'm also wondering if it will raise its ugly head soon as I've had 9 months since end of treatment. Having got your life back it's sickening to think about going back on chemo isn't it but you have got through it once, you can do it again and great that you are getting the Parp drug too. I'm not BRAC positive so I don't think will get the option.

Good luck and keep us posted!

Love

Madeline x

[Julie40 in reply to Hertsmum]

Thank you Madeline. I'm trying to stay positive and it works most of the time. I think I'm just getting a bit scared about the future. I need to keep focused on the treatment and hope/ pray that I get a longer break this time.

I'm off again to Sorrento on Sunday for some more sunshine before facing up to reality xo

[Hertsmum in reply to Julie40]

Good for you, Sorrento should be wonderful. I'm off to Florence for a few days in a couple of weeks with my daughter before she goes to Uni. Love Italy! It's very hard not to worry about the future whatever anyone says but these good times like trips are all the more precious now. Wishing you all the best,

Madeline. Xx

[Julie40 in reply to Hertsmum]

Have a lovely break with your daughter. This illness certainly makes you really enjoy every moment, even the simplest things. Holidays are that bit extra special

Xo

[Julie40]

Hi. I eat a healthy diet. Not a strict crazy diet.

[Wiganw]

Hi Julie

Been on holiday so only just seen your post. I think you may know a friend of mine Chrissy Williams (now DAvis) who also attends Christies and see prof jayson. I had my first reoccurance after 6 months, if it was ever gone. However after second line I have now had 26 months with not requiring treatment.

Hope your getting along well.

Sharon

[Julie40 in reply to Wiganw]

Hi Sharon. Chrissy is a lovely lady. We met very early on in treatment and it's always great to see her and her husband. Your message was timely I'm just about to start my treatment tomorrow so another little bit of hope for me.

If you're around for a check up let me know and we can catch up.

Xo