CT Results in. Not what we wanted: My mom has... - My Ovacome

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CT Results in. Not what we wanted

Lind58 profile image
18 Replies

My mom has just finished her 6 infusions of carbo/taxol and was optimally debulked for advanced ovarian cancer. Today we were certain that she would get an NED as mid-way scan only showed at the time two nodules on her liver left over. Today was her first post chemo scan and there are the same nodules which are shrinking but not gone. They recommend two more chemos of carbo/taxol. This is just devastating, anyone have a similar situation?

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Lind58 profile image
Lind58
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18 Replies
Lindaura profile image
Lindaura

Oh yes,

It is a shock.

I went through first line Chemo, carbo/taxol, but I was NED at the end if it and thought I would be free of cancer forever or for a year at least.

But it came back in 6 months. After what seemed like successful second line treatment of Carbo/Caelyx, my CA-125 was down to 15, but I still had 2 nodules clinging on. Shrunken, but still there.

I was disappointed, but my Onc was satisfied and said not to worry. I am now on the PARP inhibitor Niraparib and I feel great.

I think now that we can stabilise and defeat this.

Don’t give up hope.

Stick to the treatment and all will be as well as can be.

Best wishes,

Laura

Lind58 profile image
Lind58 in reply toLindaura

Thank you for your reply.

Tesla_7US profile image
Tesla_7US in reply toLindaura

Lindaura, are you brca+? My status similar to yours.

Lindaura profile image
Lindaura in reply toTesla_7US

Dear Tess,

Yes, I am BRCA1 positive and I am hanging all my hopes on this PARP.

What a situation.

We have no choice but to do our research and try to get the best treatment possible.

I hope you are doing OK.

Are you on Niraparib now?

Hugs,

Laura

Tesla_7US profile image
Tesla_7US in reply toLindaura

No Zejula. Am BRCA negative. Having more DNA testing done on tissue from original tumor. Hoping something NEW has developed in last 3.7 years. Like everyone on this forum I'm hoping to live long enough for a cure. :)

Choosetodance profile image
Choosetodance

Has she had surgery to remove the original tumors.

Lind58 profile image
Lind58 in reply toChoosetodance

Yes, she did. These were apparently left behind despite her surgeon saying he got everything. There were 3 nodules originally and now this is the last one left. Measuring at .5”

Tesla_7US profile image
Tesla_7US in reply toLind58

Lind, sometimes areas described as "nodules" can actually be clumps of dead cells at sites where tissue was removed in TAH and also killed by chemo. I have a number of those "nodules" which are exactly that. No changes in them for 3.7 years. The only way to confirm that would be to biopsy the clumps, but it's not worth the risk and insurance would most likely not pay for it.

Lind58 profile image
Lind58 in reply toTesla_7US

Thank you for your reply.

Bettyxxx profile image
Bettyxxx

Hi there

I two had 2 lesions left over after complete debulking and chemo, they were thought to be cancer and the oncologist let me retire as it was thought they would become active again. 5.5 years later those 2 lesions are still there and inactive. I have had a recurrence but not there. scans can only show so much, and the surgeon who went in the second time saw them and commented on them but they are not cancer. They still report on the scans as possible lesions, my advice is trust in your surgeon he/she is the only one who has really seen whats in there!

Positivity is the way forward I sincerely believe it helps, so try not to feel too defeated, and she still has 2 chemos to go so they may still disappear xx and good luck in her journey xxx

Diane

Lind58 profile image
Lind58 in reply toBettyxxx

Wishing you all the very best, thank you for your reply!

19Mary profile image
19Mary

It's disappointing for you both but two further sessions is nothing in the overall scheme of things. The surgeon always removes all visible cancer but some is often missed as it was in my case when OC is advanced. I was disappointed never to be declared NED but you just get on with treatment and hope for an improved outcome.

Best wishes that your mother's additional sessions of Carbo/taxol do the job.

Lind58 profile image
Lind58 in reply to19Mary

Thank you, I hope this resolves it!

mgrae456 profile image
mgrae456

Have you spoken to Dr. Chi about maybe a second look procedure to remove them. Just a thought

Lind58 profile image
Lind58 in reply tomgrae456

We thought about that, but it’s .5” nodule (one left) the medical oncologist thinks that since my mom has responded so well to chemo this will knock it out. Thoughts?

mgrae456 profile image
mgrae456

Like I said in my post I trust the doctors at MSKCC completely so I would follow whatever they say. My father was a patient there well before my mother it's a special place. If you don't mind me asking who is your mother's medical oncologist?

Lind58 profile image
Lind58 in reply tomgrae456

dr aghagian. Did your mom have avastin?

mgrae456 profile image
mgrae456

My mother goes to Dr Sabbatini she didn't have avastin. She is brca negative but participated in a clinical trial where 1/3 got a parp inhibitor with chemo 1/3 got it with chemo and 2 years after and 1/3 got placebo. We still don't know what arm she was in.

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