Post First Line Consultation Today

[kazrazmataz]

Saw consultant Today for post First line treatment (actually she was the surgeon who did my Debulking Op in August).

Had bloods done 2 days ago. All bloods back in normal range except the dreaded CA125 which was 52 exactly the same as before last chemo. Nurse at GP surgery told me the results yesterday as had a routine appointment with her, gutted is not the word!!. As my previous post chemo 5 CA125 was 52 I naturally thought it would have gone down a bit from that as had chemo 6 inbetween and I was hoping it would be within normal range indicative I thought of a remission. I had convinced myself the treatment had not worked and was immediately catapulted into feeling as frightened as when I was first diagnosed this last 24 hours.

Nitty gritty is Consultant said she is happy with my CA125 at 52! as was over 3k prior to treatment. She said I looked really well and asked me how I felt, which I told her is very well. She is she said 'hopeful' I will now be in remission so that was a turn up for the books as did not expect her to say that Today with the latest CA125 not going down to within normal range.

She said she will arrange a non urgent scan and has booked my next clinic app for 3 months time. She said they do not do routine CA125 tests so wont schedule anymore but if I have any symptoms I am to contact them. That will do for me (I like that approach) as I cannot stand the uncertainty of worrying about CA125 levels would rather not know. I feel much better since talking to her (plus a little chat to the Specialist nurse who also did not seem concerned by my higher than normal CA125)!

Avastin update

Asked about avastin the answer for me is a no. Reason being they took me off Pacltaxol after chemo 2 due to an allergic rash and switched to Caelyx. The Cancer Drugs Fund will only pay if had Carbo/Pacli firstline for Stage 4 which is what I am. No point appealing she said.

PARP Inhibitor drugs - Consultant said will be licensed for them to use in 2015 - these are the promising new drugs that kill off recurrent cancer cells, that brings new hope for our sisterhood.

Apologies I know I sound like a real drama queen about my CA125 as many of you lovely ladies have been through on that roller coaster and I feel for you. I feel guilty about that but it I think I was in shock as did not expect exactly the same result as a month before and 24 hours is not enough time for me to get my head round the fact I may not be getting any remission.

Love and best wishes everyone x

[Elaine13]

Hi, love and hugs from Cheltenham Hospital!

You are well, you have finished your treatment without too many problems and your oncologist and CNS are both pleased and not concerned by the CA125. Just a thought but none of us know what our levels were before we became ill-yours might have always been at that level. What I do know is that it drives us mad.

You have contributed so much to help Women on this site why not pat yourself on the back and give yourself some treats now you have finished treatment? The future will be what it will be ( with hope of new treatments for all Women). But you are well now and that's what really matters.

It would be lovely to have a drink in celebration of your finishing treatment but I am just waiting to be prescribed laxatives

Love and thoughts,

Elaine xx

[kazrazmataz in reply to Elaine13]

Hi Elaine

Just checking you are OK. Hope they have done your second stent and that it was OK for you and more importantly you are home and pain free. You are lovely to take the time to send me such a thoughtful message when you are stuck in hospital not knowing what's happening to you. Thinking of you, take care x

[Elaine13 in reply to kazrazmataz]

Hi there, lovely to hear from you.

My procedure has been postponed 3 times and is now booked for tomorrow. But to keep the hospital bed I have had to stay here- nearly a week for what was a day case!

Desperate for this to work so I can start chemo which is booked for Friday. I feel as if the tumour pressing on my ureter must be growing and will just make things worse.

I am up and down - I know you understand this.

But I hope you can now concentrate on having a good time at Christmas at your Sister's ( which sounds wonderful). I am hoping to go to Cornwall with my Sister at New Year; I will be 2 treatments in.

I was reading up on PARP inhibitors. We all need some more options out there. I was chatting to a woman in the ward here who has had breast cancer twice over a period of more than 20 years- it's awful but I almost felt jealous....how sad is that.

I am pretty certain we are under the same team in which case we are in good hands.

Take care, love Elaine xxx

[kazrazmataz in reply to Elaine13]

Sorry its so late have been out. Hopefully you will be asleep and when you wake they will whisk you off and do the procedure and have you back on the ward in a jiffy.

Trust me, the one thing the NHS is VERY good at is prioritising urgent cases and there is no way they would put you at risk if they thought this would worsen your condition. They will be well aware the plan is to start chemo Friday and they will not risk a delay to your care, its how they work, just does not seem like that from your perspective which is totally understandable. They also need the beds and will be under pressure from the Bed Manager.

If you want to have a chat let me know and I'll give you my number. I could pop and see you if you stay any longer, give you some support - have a chat to my friend

KH :-)x

[Elaine13]

Hi, love and hugs from Cheltenham Hospital!

You are well, you have finished your treatment without too many problems and your oncologist and CNS are both pleased and not concerned by the CA125. Just a thought but none of us know what our levels were before we became ill-yours might have always been at that level. What I do know is that it drives us mad.

You have contributed so much to help Women on this site why not pat yourself on the back and give yourself some treats now you have finished treatment? The future will be what it will be ( with hope of new treatments for all Women). But you are well now and that's what really matters.

It would be lovely to have a drink in celebration of your finishing treatment but I am just waiting to be prescribed laxatives

Love and thoughts,

Elaine xx

[kazrazmataz in reply to Elaine13]

Hi Elaine

Just wondering how you are? Hows it going.

Did you my message I sent early hours of this morning. Just noticed It was beween a duplicate message you posted (this happens if you click twice). I have copied and pasted again just in case. Apologies if seems abrupt in tone but tried to put an objective view as I can imagine a little how you must be feeling and I wanted to try and turn it around, make you feel better if poss.

Sorry its so late have been out. Hopefully you will be asleep and when you wake they will whisk you off and do the procedure and have you back on the ward in a jiffy.

Trust me, the one thing the NHS is VERY good at is prioritising urgent cases and there is no way they would put you at risk if they thought this would worsen your condition. They will be well aware the plan is to start chemo Friday and they will not risk a delay to your care, its how they work, just does not seem like that from your perspective which is totally understandable. They also need the beds and will be under pressure from the Bed Manager.

If you want to have a chat let me know and I'll give you my number. I could pop and see you if you stay any longer, give you some support - have a chat to my friend

KH :-)x

[vipervictoria]

I can understand your concern, but some women have a naturally high CA125 and this might be your normal. The fact that it's stable is good. Can you have the test repeated by your GP if you are very concerned?

You've had a hard time of it lately. I hope this is the beginning of the end, that you can enjoy Christmas and a nice long remission. Best, Vx

[kazrazmataz in reply to vipervictoria]

Many thanks for your reply, I am going to enjoy Christmas and will worry about the scan when it happens, hope you have a good Christmas too x

[Hidden]

I agree, the ca 125 has stabilished and it could be due to something else going on, mine came down after having shoulder arthoscopy so they said jokingly get the other shoulder done no way, it was worse than any chemo I can tell you straight off. If the doc is happy with you and you are not symptomatic then relax until next appointment, go and give yourself a treat for coming so far and try and enjoy Xmas without worrying too much.

[kazrazmataz in reply to Hidden]

Hi Suzuki,

Many thanks for your reply. I do feel better after seeing the consultant as per my general reply to all. Love to you too I am going to take your advice re the treats (no holds barred as they say on the L'Oreal ads 'We Are Worth It) Oh Yes!!!

[kazrazmataz]

Further to my post... I have calmed down after scaring myself silly over my CA125 of 52 post Firstline treatment. I do trust the consultant, she is a very renowned gynea/oncology surgeon. I first saw met her the day I was diagnosed after having loads of tests for liver disease/kidneys and heart failure of which were all clear. Had a drain done for what they said was 'Gross Ascites' it was gross in every respect and had put on 4 stone by the time they did my drain I looked like I was about to give birth to a baby elephant!

A gastro doc delivered the cancer news and they had sent for the specialist gynea/onc nurse. She was very kind and asked if I would like to see the consultant who was not based at my hospital but she covered the territory if that makes sense. I next met her when I attended my pre-op assessment with a nurse. Was only meant to see the nurse but saw a post-it note on the outside of my file saying 'Stage 4'. I was in bits, practically hysterical as they had only said stage 3 in clinic. The poor nurse did not know what to say she had only gone to get some info leaflets for me about the surgery and its my fault as was being nosy about what the post-it note on the outside of my file said, I did not touch my file as not that brave but the note was visible as on the outside. The nurse said she was going to try and get a doc to see me and came back with the surgeon lady! I think in hindsight the surgeon was probably appalled that the ONC consultant had not told me stage 4 so she was naturally very concerned. She said I was 'technically stage 4' as had a pleural effusion (fluid in lining of one of my lungs) she said had I not been told this and I said no. I saw her again a few days later following my scan. Had had 3 chemos as first was inoperable. She said it was 'good news' I had responded very well to the chemo, pleural effusion had gone but had tumour on top of liver which she would scrape off and a pocket in lower abdo region but bowel not involved. Was calm and OK about that, grateful they could do op.

Anyway sorry to drone on but as already reported on here surgery went well, was 'optimally debulked' and sailed through it and rest of chemo. So basically surgeon lady knows me pretty well I'd say and I'm not exactly the shy retiring type. I had a bit of a melt down when a young male nurse said 'you have a bit of a rash on your chest' was in the shower at the time with him and a female nurse who had gone to get some more shower gel or something, picture me crying almost hysterically as thought they had give me penicillin and have a platinum chemo/penicillin cocktail allergy already so thought they had give me penicillin and had now got a carbo/penicillin allery as well which could mean no more carbo for me 9its a long story). Soecialist nurse later came and reassured me they had not given me penicillin and it was a natural reaction post major surgery to have a bit of a meldown (just wish it had not been in the shower with a good looking male nurse half my age!! I am a nightmare!

Bottom line is now feeling calm, reassured by consultant and your comments on here as for all I know my CA125 is naturally a bit high, has not gone up and doc positive could still be in remission as CA125 is not that reliable a measure on its own. plus she is arranging 'a non urgent' scan and does not want to see me for three months (unless I have any symptoms) .

On that note I am off, going to have an amazing Christmas at my youngest sisters in Kent, very Nigella style cosy house with log burners on the coast, will be going walks on the sea front, drinking in the pub Christmas Eve (and Boxing day) and generally eating drinking and being merry for several days plus a few nights outs/lunches with the girls inbetween. Going to get my two inch long hair layered and go 50 shades of blonde to forget about treatment and hospital consultations until Feb appointment all being well as life as they say is for living. Got to go now as got my family coming round, got curry cooking in slow cooker need to get the wine chilled and do my make up as want them to see I am doing great x

[Hidden in reply to kazrazmataz]

I also had melt down a few days after surgery but felt it coming on and went to the day room to have it alone. One of the nurses on duty came in and gave out to me. She told me that it wasnt a physciatric hospital I was in, so I said, who was I upsetting only myself, I had come away from the ward to avoid upsetting anyone. Of course the night before, one patient had been caught smoking in her bed with curtains drawn so I had got no sleep because there was a huge commotion as matron was called. That nurse was so nasty, and now she is the gynae liason nurse, mind you she is a little better these days. The night staff came on and one came and spoke to me and told me not to worry about her ladyship, that I cried because I needed to cry. That was really lovely to hear I was normal. So I hope you have a nice time with your visitors this evening and yes we are worth it,

[kazrazmataz in reply to Hidden]

Visitors gone now hubby got MOTD on telly so got back on line. That nurse sounds horrible at least the ones that dealt with me were nice. Apparently it is normal to have a meltdown after major surgery, you should have complained about her but I know its difficult when its happening to you and you are at your most vulnerable. Wish I had been there, I would have stuck up for you, I am great at sticking up for people. My hubby fell head first 4ft off some ladders last year and broke his neck (he's OK no lasting damage, could have been lots worse). He had had a few problems whilst in hospital re delays in getting pain relief and other meds so I went to the desk to sort them out. There were about 8 staff there all making excuses so I said, Excuse me but I thought the patient should be central to everything they do but from where I was standing that was not happening. Saw a DR straight away after that and things got sorted.

[Hidden in reply to kazrazmataz]

Good for you that you can speak up. I am learning slowly, that I am important in this too. Yes that nurse wasnt particularly nice at the time and I did say it to that nice night nurse and she said if you cant sleep and want company during the night come to us at the nurses station. Such a difference. That other lady has mellowed in time. I am lucky I have a great onc who is so kind to me. I am just on Avastin at the moment had a combo of Gem with Avastin and finished Gem in Feb so on Avastin every three weeks. The chemo nurses are great and run off their feet. I went back to work shorter hours do three mornings a week and its enough. I will be retiring next year anyhow. I do hope that in 2015 things will improve as regards more treatment options.

[kazrazmataz in reply to Hidden]

That nurse that upset you is in the wrong job, nurses are supposed to have compassion and be kind no matter what, no excuses. We are the most important part of their job (doctors and nurses) thankfully most of them are wonderful there's just the odd one that lets their profession down!.

[kazrazmataz in reply to Hidden]

That nurse that upset you is in the wrong job, nurses are supposed to have compassion and be kind no matter what, no excuses. We are the most important part of their job (doctors and nurses) thankfully most of them are wonderful there's just the odd one that lets their profession down!.

[thesilent1]

Great news, well done. So pleased for you. I had never even heard of CA125 prior to my illness so have no idea what level it normally was.

Your Christmas plans sound wonderful. My son in laws parents have a holiday home on the North coast of NI, right on the sea front and there is nothing better than sitting in the big bay window on a cold day watching the waves crash against the rocks whilst all cosy and warm with the log burner going. Have a wonderful time with your family.

Ann xo

[kazrazmataz in reply to thesilent1]

Thanks Ann, your right like most of us I had not heard of the CA125, or that they should do this simple blood test for any woman presenting with one or more symptoms of OC as per NICE algorithms. They should also arrange this test for ALL women over 50 who report IBS symptoms. This does not always happen hence the problem with late diagnosis. The other problem is there needs to be an awareness campaign as in NI championed by Una Crudden.

Target Ovarian are working on educating GP's and putting the key messages out there but more needs to be done so that every woman is aware to go see her GP and when she gets there they know what to look for and how to act, its as the meer cats say 'simples'.