update on me/ Tracey 2424

Hi Ladies,

Not been on the board for a while been having a really hard time, following my Jaundice i had my Cisplatin/Gemzar regime round 1, treatment day is a Tuesday by Saturday i had turned an awful colour ofyellow/green so admitted to hospital and let out on the following Tuesday on entering the hospital my Bil was at his highest on Sunday at 328…
I was sent home and asked to return in 3 weeks to see what my new blood count was and for round 2 of chemo by the end of the second week my colour had dropped and felt normal again, when i went back to the onc my liver counts had come down by half much to his suprise.

So onto the second round and once again by Saturday my yellow colour has come back and today my enzynes have rose again, i am so pissed off and really am unable to be positive i look awful my eyes are grey and the insides yellow.

The onc says that Gemzar is known to make your liver enzymes fluctuate but is also hard on the liver and as a lot of my liver is compromised its working even harder,

im thinking of getting a second opinion as i am beginning to feel like a number at my hospital and not a person i suppose eally im asking has anyone been and got a second opinion at another hospital Christies, Royal Marsden etc.

i have been so well for the past two yrs and it freaks me out to think this has all happened overnight, i dont feel im getting the best from my onc people seem to love him but ive always been a bit sceptical when things are good hes ok but when not so good a bit too negative.

Hes saying my only option left is Vinorabline and well decide on my next visit.

sorry for the long winded rant but im scared to death its my beautiful daughters 16th birthday today so that brave faces got to come back out but my hearts breaking…

Love Tracey. x

Hi Tracey

I am sorry to read that you are having such a difficult time at the moment. I thought you may like to know about some of the other support services from Breast Cancer Care for secondary breast cancer. There is a telephone support group, the aim of the group is to give you the opportunity to talk privately and confidentially to other people around the UK with similar experiences. Discussions cover issues such as relationships, work, money, living with uncertainty, treatment, as well as everyday life, for more information click on the link:

breastcancercare.org.uk/content.php?page_id=11306

There is also a secondary live chat, this Breast Cancer Care’s online chat facility where you can talk to others in real time, it’s from 8.30 pm - 9.30 pm on Tuesdays. It is facilitated by an expert moderator and a nurse who are on hand to point you to sources of help and information. But for most people, the chance to talk to others in a similar situation is what counts, again for more information click the link:

breastcancercare.org.uk/content.php?page_id=6218

I hope this is of some help to you Tracey.

Best wishes
Lucy

Hi Tracey

Sorry you are not feeling well right now and things have been bad for you, it sounds awful what you are going through and I hope that things settle down for you.

The uncertainty is awful isn’t it. I have had an emotional few days, and my poor little man, who is 17 months has had wet hair going to bed each night where I shed a few tears giving him his bottle and wondering how long I actually will get to watch him grow up. Rips your heart out doesn’t it and makes me wonder “why me”!!!

Sure you will get lots of advice and I know lots of people go to the Marsden and it is supposed to be excellent, keep thinking about getting referred there myself sometimes.

Anyway, rambling on a bit. I do hope you enjoy your daughters 16th as best you can and hope things improve for you soon.

Take care and lots of love
Dawn
xxx

Hi Tracy

Its awful that you have had this suddenly happen, I am sorry to hear this.

Why dont you ask for that second opinion - go to the Marsden and have a full and frank discussion there. I often feel that the onc has one gameplan and although they make a show of listening I am not really sure they do. There are so many variations in treatment that someone else might take a completely different look at things.

Know what you mean about putting your face on - but I hope you can enjoy your daughters birthday.

love
cathy

Hi Tracey

So sorry to hear you are having such a rough time of it. And the onc’s talk of “only options” sounds very scary. Think your idea of getting a 2nd opinion is good though, particularly at somewhere like the Marsden where you may find there are indeed other options. You really do need faith in the medical team and it sounds as if you are losing that. So don’t think you have anything to lose by asking for a 2nd opinion - if they would go for another treatment, that gives you more options. If they don’t, then at least you know the Vinorabline that your onc is suggesting is the best next step.

Hope you’ve enjoyed your daughter’s birthday despite everything - do know what you mean about putting a brave face on though.

Lots of love

Kay xx

Hi tracey.
sorry you are having such a rough time. I think it sounds a good plan to ask for a second opinion, at least then you won’t be wondering whether there were other options for you, i really hope there are & that you get care from a team you feel confident with. Hoping you can enjoy your daughters birthday,
with my best wishes
Rivergirl.

Hi
sorry to hear you news. hope you had a good birthday with your daughter.
it’s my twins 11th birthday today and unless a miracle occurs, this will be their last with me - it’s heart wrenching.
Definately get another opinion - depending on where you live. Marsden is wonderful and are doing some early trials under Dr de Bono so you could ask to be directly referred to him or to prf steve johnson there who is head bc man there
i don’t know any names at Christies or other big centres of excellence but maybe others can help.
Don’t get put off by your onc - I’ve really had to push for more chemo and just about to finish gem/carbo this week but going to push for a trial if eligible or recycled chemo or referral to Marsden.
By pushing as hard as i did in december when i was really poorly, I’ve had 5 months of reasonably good health.Every month to me is precious so push or get someone to push on your behalf. I get so tired of pushing , I’m going with a delegation this week!!!
please get another opinion
good luck and hope you start to feel better
Kate

HI Tracey,
Sorry to hear you’re having such a rough time. It’s bad enough coping with feeling poorly and even worse when you don’t feel confident with your team. Definitely worth asking for a second opinion and I’ve heard such good things about the Marsden too.

I hope you were able to enjoy your daughter’s birthday. This illness makes you realise how precious every day is.
I do hope you start to feel better soon and get some good medical advice and options.

Love Anne

Thanks for the replies ladies, the irony of it all is i dont actually feel poorly fatigued which my onc states is from the cancer personally i think from the chemo but im still up and about, life goes on when you have kids as you all know too well.

The Marsden sounds pretty promising what id like to know is whos actually eligible for all this RFA, Chemobalisation, Spheres etc i threw all this at my onc with not much outcome, sometimes i think it really comes down to NHS cost, as i asked if i could try the Herceptin again in conjunction he said it was not really licensed to be used again when its failed you.
But when its your life youll try anything im sure youll agree.!!!

Anyway have a great day in London good job i did not arrange to come due to my kids birthdays must have been fate.

Love to all
Tracey.

I am triple negative so this doesn’t apply to me, but in America and Germany there is another drug they try once herceptain has failed. I’m sorry I don’t remember the name of it, maybe something like tykerb! I just briefly read about it and the minute I realised it was not suitable for myself I didn’t take it in. Google tykerb and ask you onc about it.

Good Luck

Diane

Hi Tracey,
There was something in the Telegraph this week about it. GlaxoSmithKline’s Tykerb is marketed in the EU as Tyverb, just to confuse us! Also called Lapatinib. It works only on HER2 positive tumours. The paper says it’s cheaper than Herceptin at £6,700 a year (against £20,000 for herceptin) but hasn’t been approved by NICE yet. This means patients have to apply for special consideration for funding and can be denied it (or maybe a trial?). They’re waiting for a European licence, then will fast-track it, but it will still be 4 or 5 months till it’s approved.
The article can probably be found on the Telegraph website. It was on 18th April.
I think a second opinion’s well worth it, just for the record. You can’t afford to be ‘polite’ and accept what your onc says if you’ve lost faith in him. This is too important.
I really wish you well, and hope things improve a lot for you,
love Jacquie x