Introducing myself

[Maryof]

I'm Mary, age 57, newly diagnosed stage 3. I had a radical hysterectomy one month ago and only knew about the cancer after histology results last week. I will start chemo soon and know nothing about the drugs or what the experience will be like. Trying to persuade myself that these drugs are my friends which will defeat any stray little #%#{# cells floating around. At the moment I'm finding it hard not to see this as a death sentence and feeling very anxious. Reading your posts has been good as you are all so positive. So I'm guessing I will be here a lot over the next few weeks/months! 😃

[JJ56]

Welcome Maryof, sorry you've had to join us but you will never find a lovelier more supportive group. It's a good bolthole to have come across.

It's a great idea to see chemo as a friend. Many of us look at our diagnosis as a chronic illness, something to live with long term, just like diabetes.

I'm coping by trying to keep my life as normal as possible. I go to the gym 5x a week and my lovely gym bunnies cajole me along and keep me laughing as they encourage me to stay as fit as possible. I do needlework too but that gives me too much quiet time to think so I try to go out meet friends and stay active and no one is allowed to treat me as an invalid!

Try to acknowledge the thought that you have an illness and you will have to incorporate it into your life and make some adjustments, like "oh blow it's chemo today," I may feel a bit rough for a few days but don't allow it to take over your life. It's a battle and some days you will feel buoyed and others as though you are sinking. It's all normal and par for the course. I find it's good to have a cry when I feel overwhelmed, let out the emotions and then once done, pick myself up and carry on. It's certainly a rollercoaster but keep telling yourself 'you can do this!' Xx

[lesleysage]

Hi Mary,

Like JJ56 and everyone else on here, really sad you have had to join us but hopefully, the sharing here will make you feel it is OK that you your emotions and 'possible consequences' are like a roller-coaster. We will all share the things we've tried that have helped us so that you can work out what you want to try. As simply as I can, mine are 1. Focus on growing healthy cells while the chemo is killing the cancer, and sadly, many other cells as well. 2. Be quick to be kind to yourself and slow to judge yourself. 3. Try, and then practice, Mindfulness (if you haven't already, that is.) I did a good online course (bemindfulonline.com) six years ago when I was first diagnosed and although I'm not a devoted practictioner, I do value it - I had a recurrence 15 months after finishing chemo so another op & chemos...but so far so good. I have downloaded an App. 'Buddify' and I'm sure others will share more. Lots of useful avenues of thought have emerged into my mind as a result of gentle practice. Now lead a very full life in a much more depleted body...but is has aged too - now 71.

Enough for now. Everyone on here will be wishing you well. Keep 'hooked in'.

Lesley

[Hidden]

Hi Mary I am also in Ireland, I can empathise with you. I think we all feel like this on diagnosis. I am living with OC for eleven years end of August. It is not a death sentence, it is manageable and you top up now and again with treatment when and if necessary. Think of it as taking bp meds to keep your bp normal, it is a chronic illness but can be managed. I am sure your Oncologist will explain to you what drugs he recommends and hopefully he will have a gynae liason nurse working with him. You will be able to build up a relationship with her as well, It is very new, very scary, thinking back to my own diagnosis but almost eleven years later, I am doing okay. Maybe when you start treatment do see if there is an Arc Cancer Support House near you. You can visit there and speak in confidence to the trained listeners. They also offer light reflexology , counselling, Mindfulness if you are interested. Here in Cork we are luck now to have four centres. The main near UCC and there is one in Bantry, Youghal , and North side of Cork City on a shorter opening hours. Also visit the Ovacare website, you can post on either forum Ovacome or Ovacare. Ovacare is based in Ireland and they will be shortly having a coffee morning in Dublin or Cork, so keep your eye on the page. Treatment itself is not as tough as you feel, the staff for the most are really nice and encouraging. I hope your Oncologist is nice too, mine is absolutely the best. Do post back here and ask questions anytime you wish, dont google for stats because they are really outdated. All the best to you

[rppizio]

Welcome to our Ladies Group. You are to be commended for finding the group so quickly. These ladies have done more to help me get through the craziness. I waited until I had already started chemo to find them. These women are experts on resources and 1st hand experience. I know for me drinking lots of water through the chemo process made a positive difference in how I felt and being able to continue working.

[Lyndy]

Hi Mary and welcome! I was really worried about chemo but was very surprised to find that it was very do-able! I wasn't sick, ok I did have duvet days when daytime telly was my saviour but overall didn't find it too bad and ended up cancer free despite stage 4 diagnosis. Take it one day at a time and follow instructions to the letter! Best of luck xx

[kristinaapril]

Hi Mary, welcome, sorry you had to join us. I also want to "ditto" what all the other ladies have already said.

I'm assuming you'll have taxol and carbo, as that is first line treatment. Taxol is the chemo that typically gives the worst side effects, but everyone reacts differently to it! Typically, prior to chemo, a nurse will give you instructions with the potential side effects - and if you need medication to combat the side effects - they can prepare it.

My mom and I prepared for the worst (I even convinced her to chew ice for a portion of the treatment, to reduce mouth sores, Lol!) and her only side effect is constipation (which she manages with medicine) and fatigue.

I am sending well wishes your way, and all the positive vibes. You got this!

Kris x

[Cropcrop]

Hi Mary of, welcome to our gang, it's sad you've had to join us but it's a good gang. you've already done the surgery, the next step chemo is a little scary but most of us here have done it and got the tee shirt. My chemo was my friend, it's good to see it that way, it won't be your bestest friend ever because it will make you feel a little rough and you may lose your hair but it is a good friend because it will be doing its job to help keep you with us. Feel free to ask any questions you have and stay as well as you can. Big hugs and love ❤️ xx Jane

[thesilent1]

Hi Mary, welcome to our club, the one that none of us wanted to be a member of! I'm sorry you find yourself here. Have you met your oncologist yet? If not, when you do, you will be talked through the treatment and possible side effects, you should also be given a copy of this information so that you can refer to it when treatment starts.

In the UK the treatment of choice for first line is two chemo drugs - carboplatin and paclitaxcol, referred to as carbo/taxol. It is the gold standard of treatment in Europe. It does, like all drugs have side effects the one we all have is hair loss, the others, its an individuals response.

We will support you in any way we can, just ask.

Ann xx

[Perthgirl]

Wish you didn't have to join us but welcome Mary. Try as much as possible to avoid Dr Google as he is not very kind to us!! I too battled with my diagnosis, 3B high grade and BRCA1, last Oct but am determined to not let cancer take over my brain so do everything to try overpower the thoughts it try to sneak in. I let myself have a sad day when it overwhelms me but then pick myself up the next day and carry on with the new normal. Stay strong and try to find something to help take your mind somewhere else. All the very best wishes to help you through your chemo xx Stacey

[Andrea63]

Hi Mary - I'm sorry you find yourself here but you will find some very supportive ladies here who will help you through treatment. I'm 54 and was diagnosed in December, also Stage 3. Like you I felt that the diagnosis was a death sentence but after getting over the hurdle of a cancer diagnosis there has been so much positive news from my doctors and also from the ladies here. I've just finished my first line treatment, 6 cycles of carbo/taxol with surgery after round 3. I now have no evidence of disease. Back in December it felt like treatment would take forever but now I can't believe it's finished. We have to learn to live with uncertainty with this disease but on the whole I feel optimistic about next steps now. Good luck and I hope you get a date for your first chemo soon. Keep us posted. Andrea xxx

[Hidden]

Hello Mary and welcome to this group of supportive ladies as we battle through this disease! I can't add a lot to the comments already made except to reiterate that looking on chemo as a big benefit is a great attitude - it does kill cancer cells and that is what you're hoping for ( even though the side effects can be a pain!). I think Suzuki said you are in Ireland? Ovacare organise coffee mornings and patient days during the year - these are held in either Cork or Dublin and it's great to meet up with the group. I was diagnosed stage 4 in June 2015 and have 3 lines of chemo, but during this time I've had a few holidays abroad and lots of weekends in Ireland so try to remain focussed on the fact that you will have good times in between the not so bad times!

Good luck!

Juliet

[Maryof]

Thanks all. It looks like my treatment will start on July 20th in James Hosp. I'm going on the javelin clinical trial. Anyone else been on it?

[January-2016-UK in reply to Maryof]

Hello Mary. I was on the Javelin 200 trial which is for platinum resistant recurrent disease. I was on the trial for over six months, Avelumab only, with very good initial results but my tumours (all in the lymph nodes) eventually started to grow again and so I had to leave the trial. However, I have a reduced disease burden and my CA126 dropped from 1880 to 142.

As this is your first line treatment, I think you must be going on the Javelin 100 trial. Do you know which Arm you will be on yet?

All the best!

[Maryof in reply to January-2016-UK]

Thanks. I only signed contract today and haven't been randomised yet. I think my trial is for post surgical woman where the tumour has been removed and bioactive tumours (hopefully). Ct scan tomorrow. I will get carbo and taxol as well. Sounds like you got some benefit which is great

.

[Maryof in reply to Maryof]

No active tumours I mean (autocorrect!!)

[January-2016-UK in reply to Maryof]

That spell-checker! I always spot it once I've pressed send, too. I'm pleased to say very little if any side-effects from Avelumab. I'm guessing you've already been given a lot of information regarding the side effects of Carbo and Taxol but no one gets them all. Try and sort out your wig / scarves / hats now, before you lose your hair. All the best.

[Maryof in reply to January-2016-UK]

And yes you were right javelin 100. Thanks for the tips.

[Maryof in reply to Maryof]

Hi January 2016

At this stage I've had 3 cycles, first one Taxol/Carbo/avelemab as I was randomised into arm c. Had a reaction (flushed face) admitted for 2 nights. No mother symptoms and felt v well. Cycle two Taxol started and same reaction happened more quickly so infusion stopped. Admitted for one night. Since then haven't had the trial drug.its all v frustrating

[January-2016-UK in reply to Maryof]

Are you just having Carbo now?

[Maryof in reply to January-2016-UK]

Last time just carbo. I.will.see my onc for review in Wednesday and discuss whether to try taxol again.

[DuckLover]

I was on Arm B getting Doxil and Avelumab for 4 months but neither of the drugs worked for me. The first 2 month scan showed stable disease and then at 4 months had progression with a tumour in my eye and thrombosis. On the inspire forum I have seen people report their tumours are shrinking. Good luck I really hope it works for you!