Keeping on keeping on.

[julie93]

I am due my 5th dose of platinum tomorrow (its my 4th round of chemo in 4 years.)

My last ca125 had gone up by 10, so I had decided that if it had gone up again this time I would be having a serious chat with my oncologist before having another dose.

Just had my teleclinic appointment....... and its gone down 10 ! Not much but oh well. Its a very accurate marker for me , I realise this is not the case for everyone. I still have quite bad stomach pains but not every day .

So life goes on... I'm picking up my new car( well 5 years newer than the banger I've been driving!) this afternoon. It was actually a bit hard to decide to replace my car when my future is so uncertain, but once i decided it really cheered me up! Found it on friday, but had to wait for service and MOT.

Also my youngest daughter is back from uni this evening, looking forward to seeing her although she was only home a few weeks ago.

Juliex

[Hidden]

Hi Julie,

Glad to hear your marker is going in the right direction ......( every little helps )

I know what you mean about getting new things, I was the same when I got my prognosis I felt it might be a waste... But I am over that now and it does cheer us up.... so enjoy your lovely car.

Best wishes x G x

[julie93 in reply to Hidden]

Hi Gwyn

Thanks for your reply.

The car is lovely! Great catching up with my daughter.

Going for chemo at 1130. As you say every little helps.

Best wishes,

Juliex

[Whippit]

Dear Julie

It's so good to hear the CA125 count has gone down but I'm really sorry to hear you're in pain. It would be good if you could get some relief for that. Let's hope the treatment continues to fight for you.

I know what you mean about the car. I had a six-month check today after my last chemotherapy appointment and got an all-clear for another 3 months. I had thought it might not be worth buying myself a new bottle of perfume as I've got several I can use up. My daughter came with me to the hospital and we went for a bit of retail therapy to celebrate the good news. I treated myself to a coffee machine which is a complete indulgence as I have an old one - it's just the coffee didn't seem to taste too good. My first cup this evening with the new one really did taste good!

Keep on in there Julie. It must be hard to have your fourth line in four years. Have I understood that you have carbo-platin only? I asked my oncologist today why they don't try carbo-platin first and see how we get on, then add the Taxol afterwards and she said Taxol was optional and many ladies chose not to have it because of all the side-effects. I don't recall having that conversation at the outset and had just carbo-platin more by chance than design. It seems to have worked well for me. More tolerable than the cocktail of the two.

Have a lovely evening with your daughter.

xx Annie

[julie93 in reply to Whippit]

Hi Annie

Thanks for your reply.

Yes, in fact i am very glad the count is staying stable.

I do take painkillers when needed, but I wait quite a while to see how bad it is, its one way of monitoring how well the treatment is working(or not).Also sometimes the pain just goes.

Annie thats great news that you had a good appointment today!I am really pleased for you.

Glad to hear you have also been indulging in a bit of retail therapy. I think getting a new car is possibly a bit extreme....... it is lovely though.!

Had a very late night catching up with sarah but also got up early, making full use of my high dose of steroids!

Yes I'm having platinum only( other 3 lines always had it with something). Its obviously worked well for you.

I agree ,neuropathy is a most unwanted side effect of Taxol, particularly when it is given in repeated lines of chemo.Its been a bonus to keep my hair too! In my case I don't want to use up all my drug options at once. I may well consider weekly Taxol on its own for my next line, weekly seems to work well for some.Have had neuropathy off and on but don't have it at present.My last Taxol was almost a year ago.

Once again congratulations on your good appointment, hope you have many more.

Best wishes

Juliex

[MargaretJ]

Hi Julie!

4 lots in 4 years! Yeuch! I had 2 lots in 2 years and opted to stop when it wasn't working last summer! Luckily the tumour was operable and I now feel fine. I know what you mean about buying new things but I finally decided to have my bathroom remoddles to how I want it NOW! rather than worry about how the lack of a bath will affect its resale value when I have gone. That will be someone else's problem and, meanwhile I have my lovely big walk in shower to jump into when the stoma goes into overdrive!

Like Annie I was not offered the option of not having Taxol on the first round of chemo so had almost a year as a baldy! Theywouldn't give it 2nd time because of the neuropathy in hands and feet and I became allergic to carboplatin which worked really well for me. Cisplatin didn't so when the B comes back don't know what I'll be offered. Any ideas anyone?

Meanwhile the weather is lovely, I am back on my bike, even spent a small fortune getting it serviced, and managing 4 or 5 miles a day.

Ah well, time for breakfast! Did I mention I am on the Slimming World diet, have lost over a stone and have had to buy size 16 trousers as the 18's & 20's were falling off. As Tony the Tiger used to say "it feels grrrrrrrreat'.

Enjoy the new car! Enjoy the sunshine!

Have a great day!

Margaret!

[julie93 in reply to MargaretJ]

Hi margaret,

The new bathroom sounds lovely, and much more suitable for you.

I think we have to be as happy as possible RIGHT NOW. Still hoping for the best obviously, but a bit of uncertainty there.

I,m most impressed with your lengthy bike rides, I bet you feel great afterwards! It must help with the weight loss too.I have the opposite problem.....I'm trying to regain the half stone I lost before I started back on chemo, going in the right direction and have regained 3lbs so far.Stiil a size 8 when I should be 10 though.

Felt really wiped out after chemo yesterday, but much better today.Taking my daughter for lunch at a lovely beach cafe.Looks a bit cloudy though, may need to change venue.

Juliex

[MargaretJ in reply to julie93]

Size 8! WOW! I was never a size 8! unlike my mother! I will throw my hat in the air if I ever get back to the size 12 I was in my 20's! I am over the moon to have made it to 16 and falling!

I have the kind of metabolism that stores fat at the drop of a hat. Must find out which hat! LOL! As I have not taken sugar in any form since 1955, dislike sweet things, do not snack between meals do not eat cake, & was told by the specialist diabetes dietician that she wished her diet was as healthy as mine, I run up and down stairs a dozen times a day, cycle and do aquarobics when I am able but still losing weight is an uphill struggle for me Why? LOL!

I only have to have a couple of glasses of wine or a packet of low fat baked crisps to put on a couple of pounds! As I told my Dr one of the positive sides of the diagnosis was losing 3 stones in 6 weeks but I put 2 back on after the first lot of chemo so now I am working on getting rid of them and some more! I am 2 stones lighter than I was this time last year and hoping for another 2 off by the same time next year!

I wish I could donbate my weight gaining facility but, unfortunately these tendencies are not catching.

Good Luck

Margaret.

[cathysal]

Hi Julie

I know just what you mean. I've had two lots of chemo in two years. On Saturday I was at my son's wedding which I quite honestly thought I would not live to see. I'm off on holiday to Majorca on Saturday. I see my oncologist when I get back though It'll only be 7 weeks since my last visit to her but she said that there's some fluid there so wants to see me about that. If I get an 'all clear' as it were for the moment - I'm going to buy a new camera. I actually got a new one a couple of years ago but find when I'm trying to take photos all I can see is my own reflection and am forever cutting people's heads off etc so I'm going to treat myself to one with the option of looking through the little viewer in the old fashioned style!!

It's such a shame that you're in pain - can't they get that sorted out for you. I count myself so lucky that I haven't really had any pain apart from the odd niggle - that's if you can be lucky having had major surgery, being bald for about 15 months out of two years, having an ileostomy with a stoma which shoves out poo almost constantly and never knowing when it's all got to start again!! Oh and also having diabetes! I think we ladies must be some of the most optomistic people going - so many of us just making the best of life while we have it. Let's all give ourselves a pat on the back!!

Cheers Cathy xx

[julie93 in reply to cathysal]

Hi Cathy,

Yes I agree, pats on the back all around to everyone on this site!

.I hope you have a lovely holiday in Majorca , I have a holiday in Wales planned at the end of chemo. I fancy the idea of a quick jaunt over to Spain though.....I'll see how I feel after Wales. To be honest it will be easier to get to Spain from Norfolk , than to get to Wales!

I do take painkillers, and have some stronger ones in reserve, so i am well sorted out. When I mentioned the pain it was because I had hoped the chemo would have sorted it out.It has improved but not gone.

Had chemo yesterday,felt really rough afterwards but much better today.Taking my daughter out for lunch . Really loving driving my new car by the way!

Juliex

[MargaretJ]

Hi Julie!

Let me knowm what kind of camera you get! I have the same problem with my digital and I was not the world's best photographer to begin with!

Margaret

[julie93 in reply to MargaretJ]

Hi Margaret

Its Cathy who is getting the camera.I'm not a great photographer, but I use the camera on my smartphone and take a lot of photos.However i may consider getting an i phone just because from what I have seen the camera on the i phone is great and you can also improve the photos after you have taken them.

Would be very glad of a donation of an extra stone, but it looks like I will just have to eat even more.Doing well today, i'm at the egg sandwich stage, have had 2 so far today.

Juliex