Am I understanding this right? and has anyone had G-CSF before?

[sammyH]

Hello,

Usual pre chemo visit today but somehow or other we ending up talking about 1st and 2nd line treatment. My consultant said something to me about 2nd line treatment being palliative so I questioned him about it. He doesn't cope under pressure, so his stammered response went something like 25% of women will be cured after 1st line treatment but if it recurs, then whilst they will throw every at you that they can...you are then classed as receiving palliative care. I think he was saying that if you recur once, then your treatment hasn't worked and therefore further treatment ( that which is available now) wont work...it will always come back

Has anyone gone into remission after their second line treatment?

Also apparently my bone marrow is a bit knackered (I feel fine) but he thinks that it might be good if I have a few shots of GCSF before the next chemo.

I have used this drug before with children who had an inherited disorder but wondered how common it was in chemo world?

Thanks Sam

xxx

Justgiving.com/sam--hunt

[Hidden]

Hi Sam,

I don't have relevant personal experience as I am still in remission after surgery and 1st chemo (as yet!). However; I think this must have been a rather shocking and unnerving interview for you. I just want to stress that (I think) what has happened in the conversation is that your consultant has 'let his petticoat show' in that he's revealed his own thinking that is usually not shared with patients. He's admitting that he tends to lump all further treatment into that description; it doesn't make him correct - or; if it is the case that that is accepted by oncologists generally, it doesn't make them correct.

I have certainly read on here about women who have gone into long remission after second chemo - and never forget all those others who stop posting and communicating about it because it stops being a pre-occupation. The medical profession are sometimes less than aware of how powerful such negative expressions can be; but don't put too much weight upon it. ALL that matters to each of us is how we as individuals react to our own treatment, and if we find the way through for our individual life and disease, we can crack it.

No experience of GCSF!

I just wanted to do what I can to encourage hope and positivity rather than the despair and fear that your consultant's slip might engender.

Very best wishes,

Isadora.

[wendydee]

Hi Sam

I think this must have been a particularly insensitive consultant, what a worry for you to have been left with this impression. I do not have any first-hand experience of this but, like Isadora, I am sure I have read on here about women on 3rd or 4th line treatment who are still going strong.

We are all different, and we can all choose our own reactions, please try to put this insensitive comment aside and concentrate on feeling well and all the other things that bring joy into your life. If you type "staying positive" into the search box at the top of the page you may see some common ideas that you can re-route your thoughts onto.

Sorry I don't have any directly helpful ideas, but just wanted you to know that you have a lot more sensitive friends on here than there are insensitive consultants out there! .......Hopefully ?!?

Love, Wendy xx

[sammyH]

Thank you both - I realised from the first day i saw him that we weren't going to get on.

He is always hiding something...I go and see my GP and he's tells me the truth.

Hopefully I will go into a long remission but it does recur I have already asked my GP to refer me to another hospital.

I am a positive type. What he said about the future treatment didn'[t upset me - more than he said he doesn't like telling women the facts because he ends up having women crying - sorry I forgot to mention that last night!!!

Yeah...I'm !

Just sat here waiting for my chemo to start..now thats another rant. I have been sat 2 hours waiting for them to get it started...tick tick tick xxx

Justgiving.com/sam--hunt

[Sueart]

Hi Sam,

I was first diagnosed with OC in 1996 and after my first relapse in 2000 also found my consultant somewhat negative. Fortunately I was able to transfer to a specialist cancer hospital, but it has meant much further to travel for both appointments and treatments. Very tiring at times.

I have had further OC relapses in 2003 & 2007. and have been incredibly fortunate to respond to treatment and go into remission each time. I was also diagnosed with breast cancer in 2007 and had surgery and radiotherapy It was at this point that my consultant suspected that I had inherited a faulty BRACA gene. I was tested for this and was found to be BRACA 1.

A recent CT scan has shown that cancer has returned yet again, but my consultant is not sure whether it is breast or ovarian secondaries. I am currently waiting for an appointment for a biiopsy so that they can decide what would be the best treatment for me.

As you can see I have had a lot of chemo in the past! Like you my white cell count seems to plummet after just one dose. I have often been given GCSF injections and found they helped me keep my chemo on track. It is really frustrating when chemo has to be delayed. I did sometimes find the GCSF made my bones ache, but they did not seem to cause me any other side effects.

I have read that those of us who are BRACA do seem to respond better than average to some chemos and there are currently studies trying to find out why this is. However, none of us are statistics and it is impossible to predict an individuals response to treatment. I am quite sure remissions are not that uncommon after 2nd line treatment and I do so hope this will be so in your case.

I send my very best wishes,

Susan

[sammyH]

HI,

Thant should have said I have sat there 2 hours in the past..today ...amazingly they started me on time - I ws out by 3.30...came home had a long rest in bed and bot I'm going for a curry. It doesn't usualy hit me til Thursday.

Thank you Susan.Your comments have really help.

I am going for genetics in May.Mum died of BC and maternal GM and GGM had breast lumps of some sort. Not sure if they will go on to test me... I hope so...more for my daughters and nieces sakes.

The Doc did say about my joints aching...funny I was looking at moving to a bungalow anyway

Sorry you seem to have realpsed again...but like you said...your history with this is good. Do you know if it better one way or another...that it be OC or BC...it terms of treatment and success?

best Wishes

xx

[Sueart in reply to sammyH]

It would seem to be a good idea for you to see a genetics specialist in view of your family history. If they think you may have a faulty gene I am sure they will arrange for you to have the test as the result could influence your future treatments.

I am having several enlarged lymph nodes in my chest biopsied on Monday, but whether it is OC or BC, I think my treatment will involve some type of chemo.

Best wishes

Susan

[linnet]

Hi Sammy-

yes I had G-CSF After the first couple of chemos- It is my understanding that it isnt that uncommon, my blood count wasnt quite getting to the level that they would give me chemo after the three weeks- so had a couple of delays in the first ones- 4 weeks rather than 3- they gave me G-CSF- its my understanding that the chemo is at its optimium effectiness if it can be given 'on time'

I havent got the the second line treatment- so cannot be much help on that- there is no reason to beleve that you cannot be in the percentage that 1st line chemo is successful in- someones got to be!

all the best

Lin

[RuthPOvacome]

Dear Sam

I'm one of the support line nurses at Ovacome and I have spoken to lots of women where their cancer has come back at various times after their initial treatment but then have gone on to have further treatment and gone into good periods of remission several times, some even 4 or more times . I am sorry to hear that the consultant was so insensitive, what he was probably meaning is that if it does return it becomes more like a chronic disease needing treatment from time to time. If you want to talk this through do give us a ring and try not to dwell on what he has said ( I know that is easier said than done!)

Ruth