2nd line treatment...can anyone share their experiences/successes

[FlorenceW]

Hi all...Happy Christmas..

I was diagnosed in March 2010, had 3 chemo, surgery, 3 chemo and finished in Sept 2010. Was in remission until November this year,started chemo again 28th Nov, had my second one last Monday. Can anyone tell me how they felt at this point? How long they were in remission afetr this. My oncologist said it would be good if I got another year without a re-accurance, I had hoped it would be longer. As you all know the chemo is such a pain...and the thought of going throught it again and again so horrible. Any thoughts/advice?

[Hidden]

Dear FlorenceW,

What a horrible situation to find yourself in - and the prospect of going through chemo again and again. I just want to 'nudge' you out of doing the thing we all do; seeking YOUR answers in OTHERS' experiences. I think there is a huge danger that we lose sight of our own difference and ability to 'buck the trend' in comparison. No one (especially not your oncologist) knows how YOU will respond to this chemo, and the lifestyle treatments you choose for yourself. Yes, of course they can report their experience of other patients' experiences, but they are confronted dailly with the cases that are active - believe you me; when you are in longer term remission you fall off their radar, and are viewed as something 'rich and strange'. My hospital checks have even stopped arriving on schedule - so I just go to my GP (a nice problem to have).

I firmly believe that it can be detrimental to become 'institutionalised' into a belief about your illness, so I want to emphasise that you are a wonderful individual who is searching for your way out of a series of recurrences. Keep your sights on that for now; and cross whatever bridges appear on your route as they appear.

Very best wishes,

Isadora.

[FlorenceW in reply to Hidden]

I love your emails...thy're just so inspiring...you are an inspiring lady. I read you were a therapist. Are you in Londion?

[Hidden in reply to FlorenceW]

That's kind - no; I'm not near London, I'm afraid.

I.

[sarah1963]

Dear Florence and Isadora

First of all I hope you have both come through Christmas in good heart. I feel a bit shell shocked.

Very wise words Isadora. You can't simply assume that your life will simple consist of one course of chemotherapy after another. Yes chemo is Horrible and I have developed a phobia about it so I know exactly how depressing it is to look at the future as being just that.

But.. No one knows that this will be the case, least of all the oncologists. We all want to know what's going to happen next and will we, by some miracle, be cured. The not knowing means that we can put too much emphasis on the experiences of others - so you can feel up or down depending on who you spoke to last. All I can say is that there is a lot of very solid reasons to Hope and you have the mental and physical resources to meet what ever hurdles you have to overcome.

Sarah

[FlorenceW in reply to sarah1963]

Thank you Sarah,....very positive and thoughtful......how are you?

[sarah1963 in reply to FlorenceW]

I am fine thanks Florence. I'm into the last few weeks of a drugs trial which has been a big success. Thankfully its a chemo pill once a day so no nasty intravenous stuff. I think they might keep me on the drug, hopefully on a lower dose as I am fed up with the side effects. Among other things I haven't been able to drink alcohol as my mouth is too sore and my hair is turning white!

Is your chemo weekly or monthly? If you can have a couple of 'normal' weeks in between treatment it makes it a bit more bearable.

[FlorenceW in reply to sarah1963]

sorry about side effects...how did you get on the new treatment? My chemo is every 3 weeks,,,and yes middle half onwards gets so much better!

[sarah1963 in reply to FlorenceW]

I got myself referred to the Royal Marsden as I was running out of conventional chemo options. I was very lucky to be in the right place at the right time for this particular drug but there are different trials happening all the time. I met a woman there last time who had OC for 11 years and was kept healthy and working on a different trial drug that she was taking indefinitely. The picture is changing all the time so....

Have a very hopeful and happy New Year. Love your westie.

Sarah

[FlorenceW in reply to sarah1963]

Hi Sarah......I'm being treated at the Royal Marsden too.......have seen Jim Howard the last few times..he's so knowledgeable and lovely....who have you seen? When were you first diagnosed? Sorry if I have asked that before.xx

[BusyLizzie]

Hi Florence,

How is your CA125 doing? What was it before starting and what is it now?

I have just started bloating so I think I shall be back on the chemo soon for round 2 myself. I got no remission from round 1.

I presume you are on carbo/taxol again since it was effective the first time round?

Love Lizzie

X

[FlorenceW]

Hi my ca125 was 2100 when first diagnosed, went down to 34 after treatment, was up to 100 when re-accurance found on ct scan. Am bloating much more now though. In the bath yesterday felt I looked about 7 months pregnant. When did you finish round 1? What stage were you when first diagnosed? Would love to hear from you!

[BusyLizzie in reply to FlorenceW]

Hi Florence,

I finished round 1 on October 28th. I was first diagnosed at 3c. I am finding it difficult to walk now, because I am only little and the bloating is taking over. I started bloating Christmas Eve and managed to contact my specialist nurse yesterday. She did me proud and got me into see my onologist's registrar tomorrow. I have seen her before, but my oncologist himself is off until 16th Jan. Apparently I was scheduled to be discussed at an ad-hoc MDT today, so I should find out tomorrow hopefully what was said. I had a PET scan on the 15th and have not had the results yet so tomorrow I may hear news I don't really want.

BUT despite it all, I just had a wonderful holiday at Raymond Blanc's hotel in Oxford (a gift to me and my husband from a lovely sister-in-law) and we then walked around Oxford to take in the sights.

Trying not to get down, but I feel my cancer is relentless. It is platinum resistant grade 3 and my CA125 is doubling every month. So when I think about it, it is hard to bear - so I try instead not to focus too far ahead.

Love Lizzie

X

[bosue in reply to BusyLizzie]

Lizzie, good luck for tomorrow, hope all goes well, let us know the results . xx

[BusyLizzie in reply to bosue]

Thanks Bosue. I did a new blog about today. Hope you had a good Christmas.

Love Lizzie

X

[FlorenceW in reply to BusyLizzie]

Oxford treat sounded lovely!!!!!Hope tomorrow's appt goes well...let me know....will be thinking of you...be strong...easy to say I know! All the best!xx

[BusyLizzie in reply to FlorenceW]

Thanks Florence, I have just done a new blog about my news. Are you on carbo/taxol again?

Love Lizzie

X

[FlorenceW in reply to BusyLizzie]

yes......I'll go and read your blog nowxxx

[Hidden]

Hi Florence

So sorry to hear of your reoccurrance. I was diagnosed April 2010 and finished chemo in Sept 2010 and in still in remission (I hope!). How did you know it had come back? Did you have a routine scan? My oncologist doesn't do any of this. Only asks me how I feel. Trouble is, there are always times when we don't feel completely ok and I worry that it's coming back, but I agree with the wise Isadora, we are all different and you sound like a very strong woman. I am sure you will come through this again and you are already nearly half way through. All the best for 2012. ChrisR x

[FlorenceW in reply to Hidden]

Hi...I was on 3 monthly ca125's, and it had gradually been going up.....and once it got to 100 they did a ct scan and from there it was back into treatment. Do you have regular ca125's? Strange how the hospitals are all different? All the best!x

[Hidden]

Hi Florence

Hope you and all the other ladies on this site have had a lovely Christmas.

No I don't have ca125 tests. My oncologist is a believer in trials that showed there is no benefit to starting chemo earlier than necessary (which still seems strange to me). She/he (depending on who I see) just goes by how I'm feeling and also examines me. I know I could insist on a CA125 but I'm feeling good at the moment and too cowardly to break the spell!!

I wish you and everyone else a Happy New Year.

ChrisR x