Ned/Remission?

[Droomfles]

Hi ladies!

I'm well informed about my disease and treatment but 2 simple question remain that I'm just not sure about.

I am a low grader, stage 2C/3A (a bit of microscopic cells in omentum that was taken out) Had a successful complete debulking op and CA125 went from 210 to 13 post-op and down to 10 during chemo.

I only have 3 weeks of chemo left and halfway May the first CT scan will take place.

So after a successful op and a low CA125 what could they still find? And when do they say you're all clear or in remission? And is being NED the same as being in remission?

And another question. Is progression free disease measured from the point of diagnosis or from the point where first line treatment (surgery + chemo) ended?

Hope someone can help.

Love and all the best to you all!

Esther

[Spirit22]

Hello Esther I am another low grader 2a serous and at a similar stage to you. Had successful Hysterectomy end of October and will have my 4th cycle tomorrow of Taxol/carbo and will also finish in end of April and scan in May. Bloods have been normal since my op . Yes would be interested to know this too. Perhaps I should ask oncologist tomorrow.

Best Wishes xxxx

Lesley

[Droomfles in reply to Spirit22]

Hi Spirit! Let's go beat this together. Long NED, hope and new treatments. I'll remain positive as long as I can and enjoy life And let's see if anyone has an answer to the questions.

If you have any questions for me please ask :). Keep in touch and all the best!

X Esther

[Spirit22 in reply to Droomfles]

Yes lets fight this together ! and long NED. Thank you Esther I am sure I will have a few questions and likewise to you too if you need to ask anything! I will keep in touch All the best to you too

Lesley

X

[Artgreen]

My onc ( the one that wasn't brutal!) said "NED" is what we look to achieve after the surgery and chemo but that "remission" and "all clear" aren't words he would use, more like to treat it as a chronic disease that can be managed. It wasn't what I wanted to hear but I do see that some people can have very long periods of NED. Peace of mind is hard to achieve with this sometimes. Reminding myself to be in the now not the future is a daily practise. Worth asking your onc though as they may have a different attitude.

Hugs and love

Alex x

[Droomfles in reply to Artgreen]

Yes thanks Alex!

I'm aware of it might becoming a chronic disease. Although my Onc and Gyn told me it looks curable but they can't promise anything. Onc gave it a 30% chance of not coming back in my case. Just don't know if progression free time is measured from day of diagnosis or end of therapy. Makes a big difference in the stats.

X Esther

[Artgreen in reply to Droomfles]

Your onc sounds so much better than mine! I guess it depends if chemo can be proved to have been successful but here in the NHS there is no scan till after chemo is completed. Ca125 would probably have reduced post surgery anyway. My understanding is that the diagnosis couldn’t be given until the tumour was removed and biopsied. I’m also guessing it also depends on staging. If 3a that’s microscopic contamination remaining but no evidence but if stage 2 there is no contamination left behind. Maybe age also contributes to the outcome?

It seems quite unpredictable but the oncs don’t take the effect of cortisol and stress on inflammation markers (CA125) and how your own immune system can be compromised into consideration.

Alex x

[Steitlk in reply to Artgreen]

I have a great oncologist, but one who is not afraid to be honest with me, when I ask her the hard questions. She said they can’t cure it, but will do the best they can to manage it and help me have the longest quality of life they can. She seemed sad that she could not provide me with some alternative treatments, along with traditional allopathic ones like chemo. She said I would have to find another doctor for that. So I sought out a doctor of osteopathy who gives me a vitamin c and vitamin cocktail iv when I can afford it, usually 2 days before chemo. It has done me a world of good, and the side effects are so much less and frequent than my first chemo in 2017. I will work some temp or seasonal jobs during states if remission to afford it. But I generally feel pretty good. My 86 year old mom is 13 years from the same exact diagnosis and feeling well and has outlived 2 husbands. Mind over matter and full steam ahead on a great life.

[Artgreen in reply to Steitlk]

That’s wonderful!

How did you find your doctor? Are you in the U.K.?

Are you a low grader? Sorry about all the questions!

Us low graders know that our oc is chemo resistant so it’s a real dilemma between taking the only treatment on offer and weighing up the likelihood of it working v quality of life. With the vitamin c that would add another positive to the calculation. Only two more chemos for me and they may be cancelled or reduced dosage due to neuropathy. Will find out today!

Good luck and hope your regime is very successful

Alex x

[Spirit22 in reply to Artgreen]

Hi Alex I am in the UK (Essex) are you having Chemo today ? Hope they can reduce the dosage for you. I have my 4th Cycle today. Do you take Vitamin C while on Chemo? Hope all goes well for you today

Best Wishes

Lesley xx

[Artgreen in reply to Spirit22]

Hi Lesley,

yes today and then the final one next week unless they stop it. No we are not allowed supplements as it could compromise the effectiveness of the chemo . No vitamins or anything until it’s over and then only the normal daily dose.

Good luck with your chemo today too, the light is at the end of the tunnel on cycle 4 isn’t it!

I’m looking for soft peaked caps though as the hair is still leaping off my head and am finding very little on the market.

Much love chemo buddy

Alex x

[Steitlk in reply to Artgreen]

There is wonderful information here on the benefits of vitamin c and I had several mainstream doctors at the hospital sing it’s praises. I do 50,000 units of vitamin c, a bag of glutathione and a bag of alpha lipoic acid each time I go. No flu or colds for me. Too bad you don’t have more choices. I just finished chemo 6 last week so I have 2 more weeks until chemo 7. My oncologist would not commit to a time period or how many chemos. She goes by the ca125 and scans. My mom did 18 months the first time and 6 months the second time. I’ve only been at it 4 months so far. I don’t worry about my hair loss. I couldn’t style hair anyway. I have a huge collectiin of hats and I’m loving wearing them. Keep the faith and by his stripes you are healed.

[Droomfles in reply to Artgreen]

I took multi vitamins all through my chemo treatment

Onc was not against it. Oops...

[Spirit22 in reply to Artgreen]

Hi Alex have you looked at Annabandana for hats they are in the UK. Great choice , good price and very quick delivery ! Love Lesley x

[Artgreen in reply to Spirit22]

Thanks Lesley I will investigate!

Alex x

[Steitlk in reply to Artgreen]

I’m in the U.S. Only remember stage IIIC. 2nd time possible metastatisis to bones. As soon as first chemo was finished, my numbers doubled each month so by the 8th month off chemo I was back at original numbers on ca125, and had developed a delayed symptom of an auto immune disorder, which I was told was incurable for my lifetime. So the oc wasn’t even slowed down. Did an internet search in my area, read doctors websites and called to ask questions. Got a great d.o. It took him 6 months to clear up all side effects from first chemo and now, being in second chemo, I have little to any side effects, including neuropathy, and this chemo is much stronger this time. The incurable autoimmune cleared up with 3 treatments-just 5 days. I have both the Mayo Clinic report that I had it and ear, nose, and throat doctor exam that the impossible was possible. The first two times of the second chemo, my doctor put me in the hospital to desensitize me and I had a nurse that sat in the room and watched me like a hawk, and the monitors and readouts. So I am sold on vitamin c ivs and I will gladly granny babysit, be a Walmart greeter, etc., for extra cash to get them.

[Artgreen in reply to Steitlk]

This sounds great but isn’t available on the NHS sadly. We aren’t allowed to take supplements while on chemo due to the fact they may reduce the effectiveness of the chemo but may be able to take the normal dose afterwards. It’s so difficult trying to comprehend different approaches. The NHS really don’t like the alternative approaches but you take what is on offer as affording the treatment or getting insurance isn’t an option.

Good luck with this it really sounds great.

Alex x

[Hidden]

Hi Esther. I’m stage 3c (Spread in the lymph and walls of abdomen) and had my surgery in May 2017. I went through 18 weekly treatments (every week a treatment, argh) and my CA126 dropped from 2056 to 28 during that time. Finished in October 2017. CA125 dropped for a visit or two thereafter and is now 12. My Onc (in US) told me at first consultation that it is rarely cureable and more of a chronic disease as well and my recurrence change was 80% at the time. After successful surgery and chemo she said recurrence was a 50% chance. It has been 17 months and I’m still NED.

I have been told that remission is used only when you have been 2 years cancer free (from the date of last chemo and with an acceptable CA125 and NED). Until then you’ll be on a regular schedule of watch, wait and worry.

Most recurrences in OC occur in the 18-24 month stage so at 17 months I feel a bit as if I’m walking on ice that’s about to crack. It’s scary as heck and I’m anxious every day but I am determined that I’m going to walk (cautiously and fearfully. With my big girl panties and lipstick on for protection (🤣). across that thin layer of ice until I reach the land of remission where I will live in peace until the 5th year past “Cancer” (when I can move on to the land of Cured!)

See you all there?

[Droomfles in reply to Hidden]

Thank you so much for sharing your story. And please keep high hopes that your the one where it does not return. 50% is a lot better than most hear and you are moving in the right direction!

Find the land of the cured and show us the way please

You have high grade disease I presume?

Which has a very different tumour biology and needs a different approach.

So you say Remission is 2 years NED after last chemo. Thanks!

Now I still have to find out from what point progression free disease is measured. From time of diagnosis or also from time of last chemo? Any idea?

Hang in there and continue with what you are doing

X Esther

[Hidden in reply to Droomfles]

The countdown begins after the last day of chemo, Esther. Whatever we call it, may you and all our sisters, live disease free.

[Zena41]

Hello I’m low grade 3c currently NEd. Xx

[Hidden]

Not to sound blunt but these are questions you should ask your Oncologist. They know your treatment plan and the circumstances about your case. A word of advice - you have to speak up forcefully and be your own advocate. I always write down my questions and fax them to my Onc before my next visit so we can review them one by one. My oncologist doesn't mind answering any questions. God bless you in this journey!