Dilemma!!

[Coco]

Hi everyone

I have been having weekly Taxol for my 2nd re occurence and I am thrilled to tell you my marker is at an all time low of just 10. I have had 8 sessions and at our last meeting with the Oncologist he said I could stop treatment now if I wished. As I was so unsure what to do I said I would make it up to 12 then stop. But I really have had enough. My eyes and nose stream continually and my toe nails and finger nails are starting to come off!

In any of your experiences do you think the number of treatments you have makes a difference to your outcome??

It is such a hard one, I really would welcome any thoughts.

Love to each and every one of you

Coco x

[Whippit]

Dear Coco,

I've heard very good things about Dose-Dense Weekly Taxol. Is that what you're having? Apparently it reduces some of the common side-effects of Taxol such as joint pain and neuropathy. I'm really sorry to hear you're so uncomfortable with different side-effects altogether. Vile to have cold symptoms and the nail problem sounds really rotten.

What I glean from my oncologist and other wise people is that they really don't know why chemotherapy works and have no real idea as to how much you should have and how it impacts on the subsequent remission. I was surprised to hear at a recent lecture that in the USA oncologists continue chemotherapy ad infinitum. I wouldn't be happy with that.

I'm assuming you're at the leading edge of research and there's no evidence as to how long to continue the treatment. If I could bear it I'd do my best to go along with the prescription suggested by the oncologist. However, if it's affecting your quality of life you should consider whether it's worth it to you.

What a terrible decision to have to make. I hope you get some helpful answers to your dilemma. I know you'll get plenty of support from us here on the sidelines.

Loads of love xxx Annie

[Coco in reply to Whippit]

Dear Annie

You are so kind to reply so quick. yes I was having it weekly but the last two I hadfortnightly. My oncologist said they were no rules as to how many to have. He was happy to stop as my marker was so low and he felt it ihad done what it had to. But he would also be happy if I was to have a few more!! I dont know, I have bloods tomorrow So I will see after that. He is on holiday at the mo, so we cant re schedule a meeting till next week.

PS Love reading your Blogs. well done xx and lots of love to you

[Whippit]

Dear Coco, that's such a lovely reply. It does seem as though the Taxol is doing the trick for you. I don't blame you for wanting to stop the chemotherapy. I hated it. Loathed the needle in my arm and that awful pump. Hated Radio Wales blaring out in the Ward and all the jolly banter when I didn't feel jolly at all. I resented the piriton which made me feel groggy and out of sorts.

I'm obsessed with my preparations - my bungalow downstairs, my Eco-Safe for grocery deliveries, the kitchen alterations. Anyone would think I'm looking forward to going back for the second and third line of chemotherapy.

I've just posted another blog - to share a lecture I attended. I just felt so full of hope hearing what Professor Gabri had to say and I wanted to share the idea that if we can just get through the next few years there'll be a remedy and this beastly disease will be a thing of the past.

Loads and loads of love xxxx Annie

[Hidden]

Dear Annie,

It is a dilemma which way to go, did your oncologist in any way advice you on the best way forward? even though they try to stay on the sidelines they have got an opinion, for instance when I was first diagnosed and given the option of single chemo or combined my daughter asked him if it was his mum/daughter/sister/aunt etc what he would be advising them.... he then replied "both" which clinched it for me...so I know you said he was happy for you to stop but what would he suggest? he is after all the expert...now if it was myself I would stick it out.

I haven't been on weekly Taxol but have read that it is a better outcome and I am glad it is working for you...my first line chemo I lost my toenails but on a recurrence my second line chemo I didn't ...(they are now back to normal) best wishes love x G x

[Hidden in reply to Hidden]

Sorry!! I meant Coco xx

[Coco in reply to Hidden]

Dear Gwyn

My Husband kind of pushed him into saying he thought a few more would be beneficial so thats what we did. I will speak to the Nurses tomorrow when I have my bloods taken and see what they say. Guess I will try to stick it out.

Are you in remission after your second line chemo? If so, well done, and long may you stay that way

Lots of love

Cocox

P.S. very grateful for your comments

coc

[Hidden in reply to Coco]

Hi Coco,

I tried to reply earlier but it kept coming up with an error...I am now in remission for the second time even though my oncologist thought I wouldn't be.. he was just attempting to hold it back (palliative) and even at the end of the chemo he didn't give me a lot of hope.. but then when I finished chemo and had the results of a scan the tumour had gone...he did stress to me however that I have a progressive disease and it is not a cure..(we know that) I asked if it was likely to come back in the same place... to which he replied there was no way of telling...which confirmed to me that it has gone (and not just shrunk) so now it is a case of watching.. and I am hoping for a long remission best wishes love x G x