Here we go again

[yo207]

Just got the CA125 results and I was right. I will be going back on treatment soon. Although it only jumped up four points (12 to 16) I can feel it growing in my left pelvic lymph area. This will be my fourth time around in seven years. I only had one year cancer free this time around. I have to break the news to my family again which is the hardest part for me. I just lost the weight I gained from the steroids too. I try to stay positive but it is not easy. Every time I try to live not thinking about cancer it comes back. I wonder how many fights I have in me. Just venting. Hang in there everyone.

[Katmal-UK]

Im sorry to hear your news. Having had 2 recurrences myself I often wonder when the next will appear and if I have many 'fights' left in me. I suppose we just have to roll with the punches, easier said than done I know. Do you know what treatment you will be on ? Sending you a big hug. Kathy xx

[yo207 in reply to Katmal-UK]

Thank you for your response. No, not yet. I have a CT scan scheduled for next week and I see my oncologist on 7/11 so I will find out then. God Bless!

[Katmal-UK in reply to yo207]

Good luck with the scan, do let us know how you get on. Everything crossed for you and sending you best wishes xx Kathy p.s. given the way you have typed the date I assume you are in the States?

[yo207 in reply to Katmal-UK]

Thank you. I will post again when I know more. Yes, I live in Queens, New York. Thanks again for listening!❤️

[Petrolhead]

Hi Yo

Sorry that you have to through it again. I am sure you have adequate fights in you to put the ******** into place again. Keep on trucking.

Best wishes

Fay

[Ugglan]

I am so sorry you have to go through treatment and everything again! And telling your family. It is really the hardest thing and I so feel for you having to do it one more time. I wish you all the best and I hope your onc will find you an effective and tolerable treatment.

Lisa

[yo207]

Thank you for your kind words. I am trying to stay positive. Hoping the plan is tolerable as well. Trying not to overthink what is in the horizon. God Bless! 🙏

[Heddy]

I’m so sorry that you’re back on chemo. I remember leaving my doctor’s office last year crying, not because I was told my cancer metastasized but because I would be back on chemo. Since then something strange has happened: I don’t want to be off chemo. As a matter of fact I’m terrified of not being on chemo. I feel it’s kerping me alive so I need to be on chemo. I also don’t have to tell my family any news. They know I’m on it and I’m staying on it. I have been managing the weight and I’m fortunate not to have devastating side effects. I know this is a crazy response but I’m happier now then when I was always terrified that my cancer would return. The chemo is working and I’m stable for now and that’s all I can ask for.

[Colman in reply to Heddy]

Wow that's what I feel like to. It's crazy to want to stay on chemo but while I'm on it I feel safe

Claire x

[yo207 in reply to Heddy]

Hi Heddy,

Your response makes sense to me. I didn’t want chemo from day one and then I felt like I needed it. When I finished my six treatments with my last recurrence last year I was hesitant to stay on the Avastin but then I felt that I had to be on something to avoid the devastation if it came back. I have been doing fine on the Avastin until this. I am just hoping that I’m wrong but if not, I have to do what I have to do. It feels like a building fell on your head every time it comes back. Thank you reaching out. Good luck to you. God Bless!

[TarbonNZ]

Can I ask for clarification about your result, as 16 seems really low to start treatment?

[Cynthia18 in reply to TarbonNZ]

I thought the same thing

[AusTig in reply to TarbonNZ]

Yes, I was wondering the same thing. Even after a petscan and mri showed clear recurrence I had an oncologist tell me that a CA125 of 41 was nearly normal, so maybe there was nothing to worry about!

[Cynthia18]

I am sorry to hear of your reaccourance. Reading your vent...reminds me of thoughts in my head.that I try to get help for.i put it as "learning how to live

With the fear of dying"

I just said a prayer for you...my teal sister💗

[KarenArcher]

Keep positive hun, my ca125 went from 9 to 26 but as I am clinically well and my recent CY scan was normal so my oncologist is pleased, please keep up the fight, your family will find the strength as I am sure you will, much love Karen x

[yo207 in reply to KarenArcher]

Thank you Karen. The first time I had a CA125 and they removed my spleen. Last recurrence I was at 18 and I had three places where the disease was present in a Pet Scan. I am hoping that I jumped the gun this time around but preparing for the worst. You take care. xo

[Hidden]

I'm with the 3 voices above : ca125 risen 4 points to 16. Sixteen sounds a damn fine result to me. Don't start worrying until you reach 36 is my advice. Even then, your onc probably won't put you back on chemo for a while (he won't want to use up his weapons too quickly), so don't waste time worrying - you won't feel any better for it.

BTW our daughter lives in your area - Brooklyn. We live in Australia but both born in England. Such a small world these days - I remember my Grandmother had never left the area of North Wales she was born in and was afraid to ride in my brother's car; I don't think she'd ever ridden a car. How things have changed in what seems to me such a short time!

Remember - stay away from the worry. Say after me : "I will not worry" .

Best wishes. Pauline.

PS mine seems to prefer the left pelvic lymph area as a starting point too.

[Hidden in reply to Hidden]

Hello Pauline66 - It is a small world indeed my son is currently living in Brooklyn.

[yo207 in reply to Hidden]

Small world Lyn. I was born and raised in Brooklyn. Park Slope which is the most desirable area in Brooklyn these days! Be well!

[yo207 in reply to Hidden]

Definitely a small world. I will not worry. I just wanted to mention that the first time my CA125 went from 7 to 21 and they removed my spleen. I will try to enjoy my family getaway without thinking about this. Thank you Pauline. Be well! xo

[Cheryl4677]

Has recurrence been confirmed? Your CA125 is still low and within normal range so there could be other causes for a slight raise. Have you had a CT scan? I know we know our bodies and sometimes have intuitive feelings that all is not right.

Fingers crossed for you that it isn’t as grim news as you envisage. I have stressed to my family that this is a chronic disease so likely to be on treatment of some form throughout. I don’t want to raise hopes that I am ‘cured’. I think they have coped better with this thinking and I have too.

Best wishes.

Cheryl

[yo207 in reply to Cheryl4677]

Hi Cheryl,

No, it has not been medically confirmed. I am just going by past experience, CA125 level and my body talking to me. I hope that I am wrong and it is something else but I needed to vent. I will have my scan next week and will have results the week after. The waiting game as always. Thank you for reaching out. God Bless!

[FighterCW]

I’m sorry you have to go through this. I’m not yet halfway through my first chemo and this stuff isn’t easy. Thankfully we have such a wonderful support group here with so many positive outcomes. We just have to keep fighting the best we can. Take the good days with the bad. Hoping the best for you.

[yo207 in reply to FighterCW]

I hope things get better for you soon and you are back to feeling like yourself. Thank you for reaching out to me and the kind words. I know that we all need to fight. After the initial shock the strength finds it's way back into me to do what I know I have to do. Be well!

[Mptelesca]

I know how horrible it is to recur. It just knocks you on your butt emotionally and otherwise. I had to convince myself when I recurred (CA was 22) that, at least, we caught it early and the chemo will blast it out of me. Each time after chemo I feel like a building fell on me, but, within a couple of days I brush myself off and try to continue to live. Hard to do, but, we are doing it. You got a lot of fight in you. Good luck and just take care of your self. Rest, drink water, take some vitamins and this will be over before you know it.

XOX

Marisa

[yo207 in reply to Mptelesca]

Thank you for understand Marisa. I am trying to get myself together and plan for the worst but hope for the best! Good luck to you too. God Bless You! XOX

[Mptelesca in reply to yo207]

Thank you. God Bless you too!

XOX

Marisa

[tara108]

Hi. I am so sorry to hear you have recurred. I am facing my 3rd chemo soon in 3 years. I didn't start chemo the 2nd time until my CA125 was around 1500. I did wait and watch and went back under 35 after 5 chemo's. I think because we may get chemo resistant, they tend to want to wait a while before we go back on chemo, in some cases. Depends on scan results, symptoms (which I don't really get) and the jump between the CA125 numbers.

I hope your's gets knocked on the head! quickly when you start treatment and you have another 7 years, at least, with no more recurrences.

Big hugs from English gal in Australia.

[yo207 in reply to tara108]

Thank you English Gal from Australia. I am hoping the same. If I have to wage another war on this monster I will. I want it to be over and done with already!!! Australia is one the top places on my bucket list. Maybe after this bout, I will look into a trip even if it's just for a few days. We have to keep on living right! God Bless you!

[delia2]

I hope you have some good time before treatment. I have low CA 125 numbers too—I have been at 5 for the pst two tests so 16 would scare me but it’s really about the symptoms and the scan results. I’m sending positive vibes! 💐🌺🌸

[yo207 in reply to delia2]

Thank you for understanding Delia. I am just going by my past experience which was a recurrence with a score of 18 from a regular 7-8. I realize that those numbers should not cause alarm and they are still within the 35 mark but it happened to me with an 18 and 21, both times the cancer was back. I am hoping that I am jumping the gun and maybe it is something else. I just needed to vent and I am so glad that I did it on here because you all understand what it is like. Thank you and God Bless you too. Hang in there!

[Tabor]

Oh yo207 I have been in your shoes too, 4 times and been free for almost 1 year. But I stay strong and positive as you. YOU WILL FIGHT THIS AND WIN AGAIN. It’s another chapter in our lives. At least it’s caught at an early stage where they can help us. God Bless you, and lots of love and prayers sending your way.

My Dr says not to worry until above 35 you could just have slight infection some where causing number to rise, that happens

Always

Pat

[yo207 in reply to Tabor]

Dear Pat,

Thank you very much for your words of encouragement. Deep down inside I do realize that this is my life now. What I am troubled by the most is that I am on Avastin now and have been for almost a year. If the cancer keeps growing, how long before it will go so much or so fast that it cannot be dealt with. I agree that if it is a recurrence, I am hopeful that it will be at an early stage but the one year time frame does worry me. God Bless you too. I will report back once I have confirmation either way.