Saw Oncologist yesterday

[ritabon]

They said I've responded well to carbo caelyx but CA125 is still 448 and it looks like it will recur. They are lining me up for the Mirasol Trial if I'm accepted. Otherwise it's weekly taxol. I know o should feel good that everything is going well at the moment but I feel incredibly depressed and fed up with it all. Any words of help or wisdom? I'm so sorry I am just so fed up.

[SASSY196]

It's a ***** isn't it? Sending love xxx

[ritabon in reply to SASSY196]

Thanks so much xxxx Right back at 'ya

[SASSY196]

Have they offered you a PARP?

[ritabon in reply to SASSY196]

Yep i was on Niraparib for 4 months but it didn't work for me

[SASSY196 in reply to ritabon]

I'm so sorry. Just rubbish

[ritabon in reply to SASSY196]

Sassy I feel I should be more positive tho. Doctor was he said not to draw up a will yet lol. I'm just fed up with all of it......

[Lyndy]

I suspect most of us go through that feeling of depression periodically…. And often it’s not because things are that bad but this disease is relentless… no sooner have you got your levels down but you’re starting to worry about when they’ll start rising again. Give yourself permission to feel it…hopefully you will feel more positive very soon xx

[ritabon in reply to Lyndy]

Thanks so much

[Realistic]

Your no different than any of us , hopefully they will soon get you on the right path keep positive and well in yourself all helps in your general well being we all get down at times but you can do this were all in this together and they will find a cure soon things are getting better all the time. You'll soon feel better about everything. Treat yourself to something nice your going to be ok we all have our off days.Sending love & hugs SheilaFxxx

[ritabon in reply to Realistic]

I know thanks for the lovely message

[SUE7777]

I was lined up for that trial but only 20% fit the criteria and I failed. I've been on weekly Taxol and will start the prompt trial today, you could perhaps try that. I haven't had a parp because caelyx/carbo didn't work and now I'm platinum resistant. Good luck Sue xx

[SUE7777]

Sorry I mean good luck with the Mirasol trial you could be one of the lucky ones and definitely go for it. Good luck!

[SopSinger]

We're all allowed the odd bad day, just don't unpack and live there. Hopefully you'll get some better news about the trial, and even if it has to be weekly Taxol, there are lots of ladies who've lived well for months and even years on weekly Taxol, so all is not lost. Sending hugs!

[Tillymint61]

Hi there. You summed up exactly how I feel at the moment. Just 'fed up' conflicted by the sense of 'I should be glad I'm still here' and ' at least they are still treating me' but some how that can not overide the negative thoughts at the moment. I suppose in any other circumstance the term 'burn out' may apply. 2 and half years of full on 'hospital marathon' from pretty much standing start. Think we may both need to get a bit of help in how to turn off from dealing with it every minute of every bl*^dy day!! I don't actually know how to do that yet do you? I am normally so positive think it's come as a shock to feel like this. Oh yes btw I am on Rubraca as maintenance. Started February. After full chemo course,debulking attempt at maintenance with Avastin. 2nd line chemo then this maintenance.I guess Ian looking for the same advice as you!

[Horsesrock]

Oh Ritabon I’m in the same boat as you… CA125 stuck in the 500s and doing weekly taxol, fortnightly bevacizumab… or at least I should be. This week was a real bummer as they told me my port has to come out as it didn’t heal properly and then I was sent home from chemo as they couldn’t get a cannula in. The weekly regime is mean to be liveable but doesn’t feel like it. I am pretty well so grabbing any opportunity to ride and walk - it’s what keeps me sane. Best of luck with the trial… and as the others said it’s ok to feel down. Xxx

[delia2]

Just sending hugs. The whole thing sucks but hopefully you’ll get on the trial and it will be effective. Xx

[ritabon in reply to delia2]

How kind of you! Thanks

[Iside]

Understand your feelings. Have been on this Trip for 3.5 years and although am very grateful am still here I do feel despondent sometimes, wondering? Have given up on CA125 & concentrate more on how am feeling, which is ok at the moment. Cheers, Iside

[Katmal-UK]

Hi, on diagnosis I was given 2 years, still here in my 15th year despite 2 recurrences. I know it’s a drag but still here, get to throw the curtains open each morning and live in the here and now, not what may happen in the future. It’s hard but try to enjoy the time you have now otherwise it’s a waste (hope that makes sense?). Big hug, Kathy xx

[Hidden in reply to Katmal-UK]

It’s always so good to read your replies, Kathy. You’d be surprised if you knew how often I think of you. It’s great to see that you’re doing so well. 🤗

[Katmal-UK in reply to Hidden]

Aww thanks, hope you are ok?

[testarossa71]

I'm really sorry you feel like this, ritabon - for what it's worth, I'm going through similar emotions. If your Dr is saying don't draw up your will just yet (quite comic, in spite of it's dark tone!), then cling on to that. There are other things they can try yet, that may help your numbers and health stabilise. I know it's hard, but try and view the positives. I'm due to see my Onco next week and fully expect to be told that I have a recurrence. I've had a couple of very down days, and am swinging between feeling angry, feeling scared, and feeling hopeful (albeit in a slightly resigned way, if that makes sense!). Don't lose touch with the good that is in your life right now. Sending love and strength in your direction. testarossa71 xx