Ten months remission ended : Well ladies, I have... - My Ovacome

My Ovacome

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Ten months remission ended

Sashay2020 profile image

Well ladies, I have enjoyed my ten months off chemo. I went for my quarterly CA125 earlier this afternoon. I received an email a few minutes ago alerting me to new test results. I was so anxious. Last spring, when I was diagnosed at age 69, my CA125 was 177. Since I finished chemo, my quarterly numbers had been 11 or 12. Today it is 55. I see my oncologist tomorrow. I know I have to call my daughter and tell her. That is so hard to do. She’s planning a trip to Washington DC on Thursday. I am to watch her pooch while she is away. I know if I don’t tell her today, she will not be happy with me. But I just hate to upset her. I wonder how soon I will have to go back on chemo and whether he will try platinum drugs again. Oh well. 😥

Sashay

30 Replies

So sorry to hear your news, Sashay2020. An elevated CA125 is certainly concerning but may not indicate a full recurrence nor necessarily one that needs to be treated at this time. My CA125 is currently in the 90s and my CA19-9 near the same levels but there is nothing treatable at the moment (spot on the liver in last CT Scan and still not treating...no symptoms). Your doctor will likely send you for further tests before confirming anything and he/she may find nothing to treat. I hope your appointment tomorrow goes well.

I so empathize with the "what and when" to tell others. It's such a delicate balance. We want to protect them from the worry and anxiety this disease brings, we want to assure them that we'll be here for a long while to come, we want to protect them from emotional pain, etc. and yet they want to be informed, they need time to process things just as we do and make plans to support us as they want to do. You know your daughter and what she wants/needs.

Standing with you and metaphorically holding your hand. Do let us know what the Dr. recommends. Wishing you the best.

Thank you, SophiaMaria. I just told my daughter. She will meet me at my doctor’s office tomorrow. I appreciate the information. I expect my doctor will want a CT scan. I’m grateful for your kind words and support. 🙏🏽Sashay

Don't fret if you have time go back on chemo you will cope and handle it. Tell your daughter walk the poo h be grateful laugh and if you have to do more chemistry to the options ask questions and stay positive. Hugs from paris. BTW to.orrow I have 78th chemo now in 7th year

Merci beaucoup, Ruebacelle. I knew I might not have the 18 months in remission my oncologist thought I might. I suppose if I had had 24 months, I would still be sad. My younger brother asked if I intended to fight. I wasn’t sure what to say. Thank you for bolstering my courage by sharing a bit of your history. Yes, I will fight to have more time with my daughter. Thank goodness for the wonderful support of the teal ladies. 🙏🏽Sashay

I just wanted to say that your brother's comment was horribly insensitive to your circumstances. I wish I had a pithy comeback to put him back in his box, but I don't at this minute! Sending you love and the strength to deal with whatever your onco advises xx

Thanks, testarosa. My younger brother is very frightened. Our older brother and sister both had colon cancer. Both have passed. I’m the third oldest and we have a younger sister. My little brother lives in a rural area with a pit bull and at least ten guns. He was trying to tell me, in his way, that he wants me to fight. He did tell me that he wants me to have more time on the planet. Thank you for being on my side and sending me good wishes. It means such a lot to me. Sashay

I'm sorry I misunderstood your brother's intent. It's understandable that he wants you to be around for as long as possible. I wish him the strength and understanding to handle what you are going through. sending much love xx

He is a man of few words. 🙂Thanks so much. Sashay

Hi Ruebacelle, I was just reading your message and was wondering if you were on any parps after your chemo treatments when you first started on them. Donna

No am brca neg. This next consult am going to ask about parp avastin Combo

Hi, I am BRCA negative also. I’ve been on Niraparib for 13 months now after chemo, surgery and chemo again. I am stage 4 and it has been quite the journey. Hope things go well for you, Donna U.S.

Hi SashaySorry to hear your numbers hve gone up again xx fingers crossed its nothing serious xxxx. Telling the family is the worst bit I totally agree, sounds like you have a lovely daughter so give her a big hug xxx

Love Diane

Sashay2020 profile image
Sashay2020 in reply to Bettyxxx

Thanks, Diane. I FaceTimed my daughter and said I was so sorry that my CA125 had risen and she said I had nothing to apologize for and that she was sorry to hear my news. I really need to get past my feeling that my cancer is somehow my fault. It’s not. No woman deserves OC and I am going to do my best to have a little faith that I can have more quality time on planet Earth. I REALLY want to see Daniel Craig in the upcoming James Bond film. 🙂Sashay

Bettyxxx profile image
Bettyxxx in reply to Sashay2020

Daniel craig in person would be better maybe we need to tell him its an important part of our treatment 😂😂 xx weird how we feel responsible for our cancer even though the sensible bit knows we are not! Xx positive attitude soo important in my book we are with you xxxDiane

Xx

Sashay my thoughts are with you and you have had such wonderful replies. Like you I apologise for my illness as I feel it's disrupted my family's lives. They say otherwise. Enjoy your daughter's little pooch, he/she may help distract you from your worry. Let us know how you get on. Tell your daughter to have a lovely trip. A hug from me x

You are so kind to respond, Lizzieanne. Wookie is a sweet natured and gentle creature. I think you are right. She will be a comfort to me and I will have to get up, dress, and take her on her walks instead of spending the day in my nightgown. 🙂 Thank you!Sashay

Sashay, I am just echoing what Lizzieanne was saying. Hope that things will go well with you. Hugs, Donna U.S.

Thank you, Donna. I’ll know more when they redo the CA125 next month. 🤞🏽Sashay

To Sashay2020 My C125 spiked to over 100 . Went for a Catscan , they gave me two copies of the results , one for me and a one for my oncologist. They , also sent in a digital one to her .I was such a wuss , I wouldn't read my copy , My appointment was 6 days later. My Dr got to the door and said your scan was good , looked at her and admitted I was afraid to read it . I asked her about the C125 numbers and she answered they can fluctuate on any given day .

My chemo nurse said to me that they don't always show an accurate picture .

I've also read that the Covid shot can elevate it .

My numbers have started to come back down , got to hang in there , which easier said than done . Good luck with your appointment, we are all pulling for you !!

Positive thoughts to you ,and good wishes .

Gill , Mookie Fox 1234

Thank you, Gill. I left my oncologist not long ago. He gave me the option of having a CT/PET scan now or wait and return in 30 days to see if it drops back down. I’m going to have a redo in 30 days of the CA125. He also said I am still considered platinum sensitive, so they would try the same frontline chemo drugs again. I was glad to hear that. But, he announced he is retiring in three months and named who he thinks is well qualified to take over my care. I hope the new guy and I get on well. I really appreciate you sharing what happened with you. It’s definitely too soon for me to give up. Sashay

Hi Sashay , Whatever you do , don't give up or give in .Brits are fighters , as my best friend keeps telling ," Brit Strong ."

I was born N. Wales went to college i Shrewsbury and came to the USA for 3 months . Met my husband after 3 weeks and the rest is history , My best friend comes from Leicester, she keeps me supplied with Yorkshire tea .

Looks as if your retiring Doc has really given a lot of thought on the Doc to take over your case. You will know pretty quickly if you are compatible.

Hope all goes well for you , hugs from across the pond , will keep you in my prayers and thoughts .

Wishing all the very best.

Gill

Thank you so much. I wish you the best, too. 🙂Sashay

Hi Sashay2020, Just got up thinking of your daughter winging it to Washington . I live in Annapolis ,about a twenty minute drive from DC .

Your daughter will be arriving to a cooler day , yesterday was in the 90s hot and humid .She may have to contend with some isolated storms tonight .

It is a beautiful city with lots to do , I hope she has a great time here and her dog takes your mind off your news .

Sending you all the best for successful treatment options . Keep fighting , a cure might be just around the corner!

Best Wishes

Gill , Mookie Fox 1234

Thanks, Gil. I did visit DC a few years ago with my daughter during Christmas time. The snow and decorations were absolutely magical. We rarely have snow in New Orleans. I would love to see DC in the spring when the 🍒 trees are blossoming. Sashay

The cherry blossoms are truly spectacular and attract a lot of visitors. Hope that things are getting back to normal after Ivan . For the first time , we had a tornado touch down near us . It took off some roofs and uprooted some trees , but no injuries than goodness.

I have been in New Orleans for Mardi Gras .

Love the seafood too ! It was a fun visit .

Hope that your daughter has a fun visit , more venues are back open . We are going to the Kennedy center tomorrow for a concert, first time in months.

Keep your spirits up and enjoy having the dog around .

Regards

Gill Mookie Fox 1234

Thanks. Enjoy the concert!Sashay

Hi Sashay My CA125 levels are rising too, in july they were 94. Had a scan September 4th got results September 13th. Consultant said nothing showed up on the scan. I'm to continue with 100mg Niraparib another scan December. A "watch & wait" situation. (I don't ask about CA125 now, they just stress me) I have told none of my kids about this, only my husband knows. We've had a wedding,birth of new grandchild & my middle child is going to Croatia for her honeymoon 18th September. I hate worrying them so will tell everyone when my daughters back. Good luck xx

I sure understand how you feel about worrying family. Thanks so much for your kind response. Sashay

Hi Sashay,

I echo what's been said by all the ladies, it is worrying even when numbers start going up, even by a few, automatically we start thinking the worst. Your MDT will always have your best interests at heart. Hopefully it's not anything to worry about, try to enjoy each day and let the Oncologists take your worry.

Thinking of you and trust all will be well. Jas x🤗

Sashay2020 profile image
Sashay2020 in reply to Dubai18

Thanks, Jas. Sound advice. 🙂Sashay

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