Well, after my CA-125 rose from 10 to 69 in the 3 months from my first post treatment check up, with no symptoms and feeling like the poster girl for great health after treatment, I was too stunned to wait and see until my arranged Oncology appointment on 15 of October and CT scan on 7 of October,
So I had another blood test run this Tuesday.
Results came back Friday morning. CA-125 rose to 101 in a week and a half.
So, there I am. Pretty certain I am on my way to a recurrence.
Suddenly, I am not in a hurry for treatment, but resigned to having it.
Therefore, I have decided to spend the next three weeks preparing. Getting my finances in order for our little business and taking care of all the maintenance jobs involved.
Also planning to splurge on restaurants that have an interesting Vegan menu, as I know I won’t be into eating later on.
Have let my family know what might be happening. I really can’t think of any other cause for the rising CA-125 levels.
One good thing, is that I am BRCA1 positive, so I am confident that treatment will be successful and that afterwards I can go in Olaparib.
Downside is that I have a weird blood syndrome that causes my bone marrow to get very depressed during chemo and I am worried about the Olaparib causing the same problem, and I want to be on it forever, but I don’t want to keep having blood transfusions for the rest of my life...
Meanwhile, I am in great shape now, so I do not expect to be as disabled this time as I was on first line, and I know how to fight the nausea and indigestion. Shame about the hair though...
Best wishes to you all,
Laura
PS: any hints about Olaparib side effects, let me know!
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Lindaura
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Hi my friend---as many have said--that feeling when you know you are recurring (or strongly suspect) is just not a good one. I won't forget mine any time soon. Anyway--I ended Carbo/Caelyx in March and had very minor "stranding and "sand" left--oncologist said he thought my immune system might mop it up but got me on Olaparib starting in April (In the U.S., oncologist has to tell insurance company you had "successful response" to chemo which my oncologist said I did) and 3 months later on Olaparib, I was NED. They actually said those words....that was July. I have had a few blood tests and two scans since and yesterday got my results of my latest blood test and it's 5--holding steady at 5 for a couple of months now. I am BRCA2. My side effects do not stop me from doing ANYTHING. I work close to full time, socialize, exercise (religiously) daily--swim mostly, spin sometimes, walk all the time--and really think that helps the side effects. You should get a prescription for a stomach pill (the kind they use for GERD) as if I forget to take it, I get bad heartburn-and taking it, nothing at all, then fatigue--but nothing near as bad as my immunotherapy trial so I just grin and bear it, and joint pain. Its intensity can vary and I believe humidity exacerbates it, so hoping the autumn weather will help. But with all this complaining, I am HAPPY and feel great to be NED and LOVE not going to hospital for IV chemo and 6 weeks between blood tests! So for now, I am a big fan of Olaparib and hope you have similar results that continue for a long time if not forever! I was so afraid to start but it was unfounded. Wishing you luck on this journey and know that the chemo is slightly easier to tolerate mentally knowing this is what follows. I assume you will be on a maintenance dose? oxoxoxo Judy
Thanks for your informative post Judy....and the reminder about (daily!) exercise 🏃♀️🏊♀️🤸♂️🏋️♂️ I needed that reminder! 🙂 So pleased that you are doing so well xoxo
Hi Laura. Firstly Im sorry to hear you are facing a recurrence. You may not lose your hair btw, I didnt when I had my 2 recurrences. As for Olaparib, well Ive been on it for 4 yrs 9 months now, NED with CA125 holding steady at below 3. Few side effects, mostly occasional dizzyness, nausea and some loose bowel issues but thats probably about it. I still work full time, albeit reducing soon to have more 'me time' lol. Good luck going forward xx Kathy.
It's strange how we seem to know before any tests that the beast is on the march again or that the chemo has stopped working. Shame most of us didn't have any of those feelings when those very first cells in us decided to go mental. I like your attitude, Laura. We get less scared as we go along. Now, for me, it is what it is whereas this time last year I was pooping myself. Actually, wouldn't mind pooping myself today bearing in mind my dilemma. xxxxx
Read about your latest agonising symptom and how even your beloved adopted country has let you down.
It is very disheartening, when our doctors, whom we depend on so heavily to look out for us, let situations like this, that cause such pain and danger, to continue, even when we have told them that something severely wrong is happening to our bodies.
I hope your recovery is swift from this latest catastrophe.
Happily, after my first 3 month check up when I was totally clear, but still suffering from aching legs (still suffering from achy legs and joints, left over from chemo), I took my daughter back to the states to visit family for ten days.
It was great and all had been fine since our return, except for this hitch, which was just unexpected, because I had convinced myself that I would be one of the lucky ones and not experience a recurrence.
Now, I feel hopeful that treatment with Olaparib will keep the cancer at bay, if indeed this is what is happening- after second line treatment.
I know that recurrence is depressing...my ca125 did a very similar leap.... but that was in January and I am still not on treatment yet and feeling well.
Mine has come back in 3 lymph nodes and so far they haven’t impacted on my health.
Soooo you might be able to spin things out depending on what exactly is happening inside...my Onc team are chilled about delaying my next treatment and I have used the time to look at trials xx
Keep your fighting spirit in top form and you will achieve much. Thinking of you and glad you are planning to organise better your affairs. It always helps to have a firm focus. Best of luck for your treatment.
I like your attitude, getting ready for what might happen.
There have been lots of good outcomes for ladies on olaparib. I was on niraparib for 9 weeks and it did affect my blood. Had a transfusion (3 pints) and onc told me to stop the drug immediately. Also advised olaparib would have the same effect. Saying all that we are all different and I will try anything that I’m offered.
Good to know and also depressing. I am hoping they will give it to me anyway and just give me periodic transfusions.
My bone marrow snapped back to its usual self after my last Chemo, so I am pretty sure that it can snap back again. But that will need to be monitored.
I wish there was an antidote for red blood cells like there is for white cells (neurlasta).
Update on my research about anaemia and PARP inhibitors.
I read about the treatment monitoring for anaemia and they say, yes, stop treatment, but only for a short time, letting your blood recover with the transfusion, but then start it up again, perhaps at a lower dose.
The benefits of Olaparib far outway, receiving a transfusion once a month and you will need to be monitored anyway.
Bloody CA125! Our lives used to be so trouble free before we got cancer. When we felt well, we enjoyed our good health now though we can't enjoy feeling well as that b***** marker brings us back to our new reality. I suppose that's why we become stronger, mentally, especially when we can share our fears and frustration with other sufferers who understand. Let's hope for miracles that it's down again in your next blood test! Gina
I was told CA125 can rise for all sorts of reasons, it is just a number. Wait until the CT scan results before you come to any conclusions. Good luck. Lyn xx
Because I have no symptoms, no pain, digestive complaints or any other signs of illness, the sudden rise of my CA-125 from 10 to 101 is kind of indicative of recurrence. Your CA-125 can rise because of some kind of bowel or stomach inflammation, but I have none of these. Just a rising CA-125, and I just think it is prudent to prepare myself for what comes next.
The ladies here have all given me pointers and I have continued to research all this, so I feel pretty good about planning ahead.
Dear Lindaura, I am new to this site and don't post much but read your stories frequently. I am hoping and praying for the best for you! Your attitude is awesome! Don't forget to try to keep moving. I hope you can take supplements/whole food vitamins that help a lot with side affects. God bless.
Hi Lindaura, No I haven't posted about my health. I am the healthiest 65 year old that I know. But in June I was diagnosed with ovarian cancer. I was totally freaked out as I have never had a surgery!!! So I had a successful surgery and now doing 6 cycle chemo, Carboplatin and Taxol. Have had 3 cycles so far. Dr caught it in early stage (2b) because I had horrible pain, ovarian torsion. She said my pain was my blessing. I am very thankful. I remember my husband and I were so afraid.
I am doing ok. The greatest side affect for me is severe leg pain. Some fatigue but the whole food multi vitamins help a great deal, I'm sure. 2 days before the mass was found, we had adopted an 11 year old boy who has lived with us since he was a baby. So we are trying to keep life normal, that's the one word I found myself crying over...Normal. And I feel bad complaining at all because you Strong ladies deal with so much and you just keep right on going. So I say, "Hooray for you".
You may not have to start treatment for some time if there's nothing or very little to be seen on the scan, so you may continue to be the picture of health for sometime to come. I agree with you about not being so disabled as first line; you know more about what to expect and are able to deal with side effects.
You may not have hair loss on treatment this time it depends on the drug and the route.
I had CA125 that rose and fell so have you another test booked? I was told a minimum three week gap between tests for them to be accurate. I’m guessing it’s a good indicator for you?
My CA levels used to stress me out. As you’ve got a few weeks before your scan anything could happen. It could easily reduce
What is your plan for after the scan? I was given a choice of options/scenarios and wish I’d put some thought into it so I was prepared.
From 3000 down to 9 at the end of treatment in March.
10 at the end of May.
69 at the end of August.
101 - 2 week’s later.
I am planning to get another test in 2 week’s, scan in 3 week’s, Ongology team a week later.
If my scan shows nothing, but my CA-125 goes up consistently, I will opt for Chemo. As I am BRCA1 Positive, I will get the same chemo, Carbo/Taxol, but I will ask for less Taxol, because of the neuropathy.
I expect treatment to be successful and am planning to go on to Olaparib forever.
Hi. There's a trial called Athena that's testing parp inhibitors and immunotherapy as maintenance after first line chemo. They're doing it at UCL as well as in the US. I'm not sure you'd be eligible because 6 months have elapsed since chemo but you might check it out.
Sorry to read of your poss recurrence but glad that you sound so positive and have a plan you believe in - that’s half the battle!
As you can see from Kathy’s post Olaparib can have amazing results so here’s to you being in that group!
Good idea to get organised and enjoy FOOD over the next few weeks. One of my joys in life but now on liquid diet. Yours on chemo won’t be so restricted but I know it badly affected my tastebuds and lots of fav foods didn’t taste right.
Dear Lindaura, sorry to hear about your ca-125 scores. I do have good news, though, regarding Olaparib side effects!
I've been on Olaparib for 5 years, and I can say the side effects are small compared to Taxol/Carbo! The worst is the nausea, but that's easily resolved with Zofran and/or Marinol. I've had aches & pains in joints, but these are from my osteoarthritis, which I had 10 years before my treatment began for ovarian cancer. So, all said, my side effects seem minimal.
Best of luck to you, good thing you're staying on top of things!
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