How Can One Number make you feel Happy or Crappy - My Ovacome

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How Can One Number make you feel Happy or Crappy

PCCDaisy profile image
PCCDaisy

Well Hello,

Last week started Doxil because my weekly Taxol wasnt cutting it anymore. So April 1st was the last Taxol and my CA 125 was 25 which rose 11 from the prior month. Because I started new treatment on April 15th they took another test which my CA 125 was 59. How the heck can this happen, and has this happened to anybody else?

At least I started a new treatment and this hopefully will kill this bugger, damn it will and then be put on maintenance drug.

Needed to vent and thanks again my teal sisters...

Cheers 🍻🥂🍻🥂

Shelly

13 Replies

Hey Shelly,I agree, those magical numbers are an emotional rollercoaster! In the early days, I was oblivious to their significance which was probably a blessing. I still don't fully understand them, for example, how serious is an increase of 1, or 10 or 100?? It seems that various factors can effect the number so it's just a potential indicator.

And I try to focus on what my oncologist said; that they will be more guided by how I feel health wise than the scans and blood tests, so we should listen to our bodies.

Best wishes. xx

Hi Shelly, Sometimes when you start a new treatment the CA125 can go up due to inflammation and your body getting used to the drug. Hang in there and try not to worry Sue xx

It's an exhausting emotional rollercoaster Shelly which I'm so sorry that you, I and all others are on! I'm thinking because the ****er ( my word here begins with a f not a c!) was not responding to Taxol it just grew. My *****er returned whilst I was on Avastin and once it got going it just started to accelerate away ( I'm not a person with massive levels) so went 90 to 170 in about 3 weeks. I have admired your immense courage and positivity in previous posts, it's helped me in my journey to try to reframe my thinking from being in a black hole of depressed to try and get joy in life again - thank you. At the moment I am trying to let go a little of the tight observations of every blood test etc but it's really hard. I am trying to balance acceptance with hope to achieve some peace and happiness . I hope you get respite from the awful CA125 number crunching and that Doxil kicks the *****we into touch. Wishing you the best as always, Sara xxx

PCCDaisy profile image
PCCDaisy in reply to SASSY196

I am thankful that it isn't any organs, I am thankful that it was a slight progression, I am thankful that the side affects that I have are minimal to others. I am thankful I have friends and family which are a great support group. I am thankful that there's a forum like this and meet my teal angels that understand what we go thru physically and emotionally and give me hope. I am thankful for your post and all the others.

Cheers,

Shelly

ovarian1c profile image
ovarian1c in reply to PCCDaisy

I am thankful formal you girls! Bless you all!

For some ca125 is the only tangible thing we have to hold onto so it's understandable we put so much emphasison on it. Iam now 18 months since diagnosis and I now know my body causes fluctuations in that figure that aren't anything to do with my diagnosis..I try now to just let the drug do what it's got to do and imagine it busyily battling away for me.

Hi. I sympathize with your frustration about the number and the chemo not working . I’m in a different boat because my CA-125 isn’t an indicator. It’s always low. It was 8 at diagnosis and 6 at recurrence. So my only information comes from scans. I have one in three weeks and I’m already panicking about it. I do hate this disease! Good luck with doxil. Use lots of moisturizer on hands and feet.

Hi Shelley Have you got your pathology results and genetic results from the tumors?

Is it endometrial cancer?

Or other?

Margaret

PCCDaisy profile image
PCCDaisy in reply to Supermary

I took a blood genetic test which told them I am PALB2 positive, which I call it the 3rd cousin to the BRAC 1 @ 2.

I am not hormonal responsive, which wouldn't matter now anyway because have no lady parts and not on any estrogen. As for my diagnosis it has been all over, from ovarian to PPC, and then Uterine which they believe were it started. The nodules I have now are on my mesendary.

But I do know I am HCSC, so this little bugger likes to grow. Just need to find the right cocktail to remove what I have left and then find a maintenance drug so it keeps at bay.

Dr assured that there are so many drugs out there, just have to find the right one.

Cheers,

Shelly

PCCDaisy profile image
PCCDaisy in reply to PCCDaisy

So funny you asked about getting tested for a genetic tumor, just got an approved pre Auth, so it will be happening soon.

Please don't worry, for now, Shelly, until you've had the second infusion of the new treatment. This could be a delayed response/presentation from when Taxol had stopped working. Take care xx

Hi Daisy,

Keep your thoughts more optimistic. its good for your health.

what kinds of other Drugs you take now?

Do you take Avastin?

It takes a while for the CA125 to change its course with new treatment.

be aware and consult your Doctors about the changes and the possible future results.

stay strong , keep your happy mood and hope for good results.

YudAlef

PCCDaisy profile image
PCCDaisy in reply to yudalef

I was on Avastin, but they took me off of it because I had such an irritated bladder which I couldn't hold it in for more then 15 minutes for a couple of weeks.

Just got in the mail that they sent a preauth tumor genetic testing to see what this bugger is all about and what targeted therapy I need to be on.

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