Once again we have had a very sad week, which brings home to all of us the terrible gravity of this awful cancer.
For me, although it is still early days, It appears that my miracle drug, Niraparib, specifically aimed for BRCA1 positive women, of which I am one, is not working that well for me.
It might be slowing down disease progression, but it has not stopped it.
My CA-125 has been steadily rising, although I am still under the limit if 35.
It has gone from 15, to 22 and now 33 for my third month.
When I finished first line, I was NED with a CA-125 of 11. That held firm for 5 months, but at the sixth month it began to double, so six weeks from that point , it was 473 and scan showed return of disease mostly on my Peritoneum.
6 months of Carbo/ Caelyx later, my CA-125 was down to 15, but there were still 2 tiny nodules, less than a centimetre, inside me.
I was disappointed then, but anxious to start Niraparib, which I thought would destroy what tiny disease was left. Now I think I should have asked to remain on Carbo/Caelyx to see if it would do the trick.
I had a scan last week which showed doubling of 3 nodules on my peritoneum. They are still infintisamal. The largest at just 1.4 centimetres, so the Niraparib may be working to slow progression, but is not stopping it.
Still, it is a disappointing result.
My own Oncologist was away, but I spoke at length with the registrar. I tried to get her to simply increase my dosage of Niraparib as I have been tolerating it so well, but after she consulted with the Onc on duty, they said that this is not the answer.
I now have a CT scan set up in 6 weeks, although I will see my oncologist before that and plan to discuss options, including increasing my dosage, but also having another surgery..
I feel fantastic as usual and have no ascites. Except for cancer, I am as healthy as a horse.
If, as it looks, I have to start a different treatment, I need to be away from platinum based chemo for 6 months.
That will be soon enough, as I finished Carbo/Caelyx 18 of March.
So I can start treatment by October, however, after discussion with husband and daughter, I think surgery is the smartest option, as the nodules seem to be only in one spot, and getting them off and blasting the area with the plasma jet would give me a better chance of stopping progression.
So, I are hoping to get me a Second surgery, instead of going straight to chemo. If my Onc does not agree, I will ask to speak to my original surgeon. And if no joy there, it will be a second opinion in London, with Prof F.
So that’s the news and that’s my plan.
Love to all of you.
Keep up the fight,
Laura
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Lindaura
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Thank you for the update and a big disappointment for you. The annoying thing is that like me you feel fit and well so it makes it harder to accept that cancer is infiltrating our bodies.
I would definitely get a second opinion just so you know the drs are 'singing from the same song sheet'. Also on a positive slant you do say that surgery is an option which would hopefully get rid of the nodules. Good luck and keep us informed x
I feel more upbeat about this, ice I got over the kicked in the teeth moment.
I am also thinking of going back directly to my original surgeon, who of course works with my oncologist, but may be worth asking his opinion directly. He uses the plasma jet also. !
You had such high hopes for the niraparib so you must be feeling disheartened. A second opinion if it does nothing else, will at least put your mind at rest that the treatment proposed is the best for you and may even show the way to something different.
Disappointing for you but it sounds like you have several options to look at which is always good - surgery sounds the best option if available as it is better out than in so hoping that your team ate on board with this / if not a second opinion from Prof F well worth pursuing - indeed a second opinion from an oncologist to review your scans etc might be worth it just to assure you that everything is in order.
It is hard when this disease seems to have plans of its own despite our best efforts - hoping that you get an answer on how to proceed as soon as possible as the uncertainty is the worst part - take care x
I’ve heard so many good thins about Prof F in this site, and then she had an article in the latest issue of the Ovacome mag about second surgeries and how effective they actually are.
This news must be disappointing for you because, like the others have said you had such high hopes.
What I do know from the help and advice you have given myself and others is that you will stop at nothing to get the best possible treatment available for you.
Keep us all informed and I'm sending love and hugs your way.
Hi, Laura. We have compared notes before as we are similar except you are brca positive and I am negative. Within a 3 month period my CA went from 15 to 22 and then jumped to 35. My first recurrence I was at 22 At that point I had a 5 cm module which they said it was too small for surgery.
I agree with increasing your dosage. I was put on alternating between 100 and 200 every other day. It brought my ca down to 15.
I also agree with getting a second opinion before entering next treatment. Your nodules are so tiny that zejula could get rid of them over a few months time.
As always, your positive attitude and strength are your best weapons. You are healthy so your immune system will kick in and fight this as well.
Sending you positive energy and lovely thoughts. Please keep us posted.
My story exactly.....am waiting to hear the "plan" this Friday. These shared stories have helped greatly in being aware of reality. Best to you....and best to me! Nancy D. Aka husband teal
So sorry to hear that your scan has showed some progression as we were all hoping the niraparib would be successful for you, although as you mentioned it could be slowing progression.
Sounds like you’ve got a comprehensive plan of action to discuss at your next appt. As someone else has posted I was just wondering whether it’s worth investigating switching to Olaparib as you are BRACA as it seems to be working for some.
Hope you continue to feel well and can enjoy the summer before you need further treatment or surgery.
Sorry to hear this Laura as I am also BRCA I I hoped that this treatment would have better results. Glad you are looking at the options including surgery xx
Now I realise I should have asked to stay on Carbo/Caelyx for another few months to totally eradicate the beast. Shrinking it did not do the trick, so I have progression instead of a recurrence.
Prof f just did my secondary debunking and was amazing. They found a tiny nodule which tested positive so I’m having more chemo but she’s the best if surgery is the way to go. X
Sorry to hear of this disappointment, but it sounds as if you have some very good options lined up. Really glad that you are feeling well, and wishing you all the best.
Hi Laura, I am almost identical to you in terms of nodules and their size and location. I have got down to CA125 of 10 twice. The first time I recurred I had completed 11 months. I have never got rid of those pesky couple of little nodules, however they were very small, well smaller than now. My CA125 for the second time has gone from 10, to 18, to 55, and a couple of weeks later, 59. The nodules have moved to the same size and location as yours. I have no ascites, and l am feeling the best I have, apart from a bad back (not cancer related). The whole thing is a bit surreal, with everyone saying how well I look, and I have these things going on inside of me. I am delaying any treatment until I have symptoms, and hoping to go out for a few more months. My Oncologist said it is important to catch things before I reach a tipping point. I have made 7.5 months this time, so apparently I am still platinum tolerant. My appointments have now been moved to 6 weekly to manage things more closely. I will discuss all of my options when I go back next month. I am not sure whether surgery is an option tho, although I do have a fast growing adnexal cyst which is apparently complex with a solid component and something else I cannot remember. If they decide this needs to be removed, they may also try and remove the nodules.
I have been talking to a woman in NZ (Brca2), who has had three recurrences, however she has been NED for 18 months after she went on a trial for a maintenance drug which she thinks is called rubredoxin. She said the trial worked so well for her, that the drug company have continued to supply it to her post trial end. I intend to mention to my Oncologist, however I do not have the Brca gene. Will be interested to see what comes of your discussions. Cheers Therese
Hi Laura--feel like you are going through what I did--I was so hopeful it would last so much longer. But the 2nd opinion doctor I went to was all for trying another one either with or without a second agent --so maybe something for us both in the future. I too had to go back to chemo (going to my 2nd week of my 2nd cycle this morning) of Carbo Gemzar due to my progression causing a thickening that made my onc think I was headed for a bowel blockage if I did not start within 3 weeks of the scan report. I had symptoms though.
I like your idea of surgery first and makes sense if the cancer can be removed--then blasted! Also--they told me to stay on the PARP while waiting for chemo to start to keep the cancer slow growing which is what was happening to you too I believe. But they told me a one week break was necessary also so I did not have the PARP in me when I started back to chemo. I look forward to your updates Laura. Wishing you luck and thinking of you.oxoxoxo Judy
So disappointed for you Laura and got everything crossed your own onc has a plan for you x good luck with the surgery option if you are able to go down that route x
What sad news. This horrible disease certainly tests our ability to handle uncertainty and disappointment - and to adapt and regroup.
I've been following your posts with interest. I'm a few months behind you -- final carbo/caelyx was two weeks ago, CA125 down to 29 last month, scan next week -- though for me this was third line and I tested negative for BRCA. Depending on the scan results, I'm lined up to start Niraparib next month. My oncologist seems to be using platinum responsiveness rather than BRCA status as the man criterion for prescribing Niraparib. I've been thinking of getting an original tumour sample tested for somatic mutations but I'm told this wouldn't affect my treatment options at this stage. I think they just don't know enough yet to target treatments. And they are still learning about Niraparib dosage: it may be that lowering the dose doesn't affect effectiveness and there could even be a case for starting on 100. These are my impressions, not authoritative! I'm wondering if this could be a good time for a second opinion, especially if the scan shows remaining disease. I want to be as well informed as I can be but my lack of science background does't help.
Like you, I've been "lucky" to feel really well throughout, aside from the treatment effects. No ascites and I've never had more than the occasional twinge from the disease itself, even when I was first diagnosed -- 3c, with so much disease they couldn't operate until I'd had 4 cycles of chemo. Perhaps if we can keep ourselves generally fit for a while longer, there will new knowledge and treatment options.
Your plan looks good. Please keep us informed. My very best to you, and to all of us...
Not lymph nodes for me. These have been spared. I have separate little growths sticking to my peritoneum that they call nodules. Maybe the are round in shape?
Ah the disappointment and the mystery of all this...
My doctor found that her patients did best and with fewer side effects with starting on 200mgs instead of 300.
She also said it was weight related and I would have to gain 30 pounds to qualify. BUT, my bloods have been excellent with an extra high platelet count and I feel that I could tolerate a higher dose!
Yah that's indeed a bit disappointing, Linda. But who knows what the disease would have been up to without the parp.
If it was me, I'd be keen on surgery too. Fingers crossed that's an option for you. If the tumors return, they should please be considerate at least and stay huddled in an accessible place, right?
I'd try to enjoy the summer as much as possible, employing Lily-Anne's famous ostrich strategy. Don't lose heart. xx. Maus
God bless and good luck to you Laura. I am in a very similar situation. Ovarian mets to colon and peritoneum. Carbo/Doxil shrunk nodules down to about .5 centimeters after 6 rounds. I have been on Olaparib pnly now for 6 weeks and will scan in August to see if it's even working to suppress. We must stay optimistic however I will always be guarded when it's scan time. Surgery sounds like a good option and I will be thinking of you. Best. Carol
What was the dosage they had you on? I'm on 600mg a day of Olaprib. Yes I'm in the U.S. I agree I hated walking away from Carbo with the .5 cm tumors left. I will check back in with you in a months time to see how you are doing. Stay strong!!!! Carol
You are so similar to me in our journey, my CA125 was 10 after first line treatment then on my first 3months check my surgeon found a nodule In the vagina , she removed it two days later.then I started 6 months of doxorubicin, when I finnised the course they gave me 5 months off , on the understanding I would need more chemo as two lymph nodes present not on any organs just showing up in back area . So I am on carbo Gem this time nearly finished C A down to 25 from 40 which is good but stubborn node still there see what's next maybe hormone treatment . Like you really well feel fine so good luck in will be interested to see how you get on xx
Hi Laura, I am sorry your hopes have been dashed but you are such a strong, compassionate and knowledgeable woman that I am sure they will be open to your suggestions of what is best for you. You are so kind and helpful to all of us on this panel and you were very reassuring to me when I first joined in distress and fear. I hope you have a successful result to whatever you decide and you let us know how you are doing. In the meantime I will be thinking of you and wishing you a peaceful and lovely "summer"
with love and thanks for being there when we need you and your positivity and optimism.
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Niraparib 8 months in - and an update from NICE
