Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis ([email protected]).
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis ([email protected]).
Recurrance #1 - Still feels new
Just want to talk I guess. I was diagnosed in July 2019 with Stage 3C High Serous. Here I am again going through chemo for the second time. Recurrence August 2020. First time - you've got this. Second time - stay positive - this can't be the end! I have just finished round 3 of chemotherapy. I am to have a CT scan before round 4. I am scared of what the scan may show.
Any reassuring stories out there?
Any reassuring stories out there?
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Hi @Camper62 So sorry to hear about your recurrence. I too am High Grade Serous 3C. Diagnosed in early 2017, surgery, chemo and supposedly clear by September that year. But October the following year I was in testing for recurrence and then in treatment as of January. I lucked out having qualified for a trial that had just started and have been on Olaparib ever since. That said, there are a number of gals I know or are on this site who have been exactly where you are and fine. In fact, there are stories here of some who've had 2 and 3 or more recurrences, finally found the right mix of treatment, and have been NED for years now.
I truly believe if we have to be stuck with this disease, it's a good time to have it. So many trials opening up, so many new drugs being approved, and so many new approaches to treatment. We are truly living longer and better lives and it will continue to get better for us.
I do know the trepidation waiting for test results. Stay positive and let's hope the scan shows the chemo is being effective. Keep us posted on your progress and in the meantime, you now have a whole army of us rooting for your success. One you engage on this site, you're never alone.
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Hi @Camper62 I too am high grade serous 3C. Just wanted to connect. I agree with @Fearless - Vol Mod that there are finally new options out there. The recent Symposium was surely evidence of that. But equally important is knowing that one is not alone; just a message away. Wishing you well.3
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I thank you all for this. Very encouraging. I have high grade serous stage 4. Had brain met 5 years ago. Just had abdominal rads for my second recurrence since the brain met. Hoping to hold off on chemo for as long as possible. It always rakes me a couple of years to get over the worst of it.1
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I will have my last chemo treatment next week. As this is a recurrence of my stage 3c high grade serous cancer, I will start on olaparib next month. Anyone out currently taking this drug? Somehow I find this scarier than the chemo. Is this the "last stop" for treatment? I will have an appointment with my oncologist the end of January - just looking for some first hand experiences or advice before then. Thanks.
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@Camper62 please don't let the prospect of taking olaparib/lynparsa scare you. So are so lucky, actually, to qualify for the drug. It's had amazing results as a maintenance treatment. And no, it is not the last stop. If your cancer would recur again, there are many other treatments to fall back on and by then and with so many advances in treatment perhaps ones we don't even know about.
What scares you about the drug? Just the thought this might be the end? If that's the case I'm sure your oncologist can put that one to rest. Side effects? We all react differently but of the current PARP inhibitors it's the "mildest" and if there is anything that causes intolerable discomfort that can usually be managed with a change in dose.
I was on Olaparib for recurrence for two years...although on a unique trial looking to see if the drug could actually be a treatment and not just maintenance...and I still call it my two year miracle. It shrunk my recurrence and kept it stable, and me out of a new round of chemo, for that long...much longer than they expected. And now I'm back in chemo and responding well. Hopefully for the last time but if not, by the time I need treatment again goodness knows what new developments will be available.
Good luck to you and please keep us posted on your progress.
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Hi , I just finished my 6 month of chemo for stage 2 aggressive Iberian cancer all went well!
Now three month after my treatment my cancer has returned . I was so shocked that it came back so quickly .Has anyone else had the same issue ?0 -
@Scottishlass
I'm so sorry to hear the chemo didn't stick with you. Yes, it is common to recur within 6 months of finishing treatment. I' not sure of your type of cancer and the chemo you received though so hard to compare notes. Your note says "iberian cancer which I assume was typo or autocorrect got the best of your note. Give us a bit more detail to go by (type of cancer and your first line treatment protocol.....chemo, surgery, chemo? or just chemo etc. and which chemo drugs you recieved. That would enable some of members to share experience that might be relevant to your own situation.
In the meantime, I assume your oncologist has a plan moving forward. Be guided by their recommendations despite how disappointed you probably are. My own recurrence happened about a year + out and it was hard to swallow for sure. But I'm five years in now and still kicking thanks to great treatment.
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Hi Fearless
Sorry for typo ! I had been diagnosed with stage 2a aggressive ovarian cancer on October 2020. I have the surgery and debulking was done as well as total hysterectomy! Free syrgery my oncologist said I would have 6 months of chemo a combination of Carboplatin/Paclitaxel ! Chemo went well I had very little side effect, after 6 months I was done in March 4th 2021. When I went for my first appointment after chemo I told my doctor I did not feel right that I felt like I did when all this cancer stuff started , blood work good then last week the results of my MRI showed the cancer was back! In less than 3 months! I did everything they ask me to do and it still came back, I am so angry and upset about what happens now!
with Covid is has been very trying to get new Luke this by yourself. Just makes it harder.
Now I have to wait for a new oncologist to see what the plans are for the future, I just wish it did not take so long to get an appointment .
At present I am in quite a bit pain lower abdominal and lower back my own doctor providing me with pain medication!
I was wondering if anyone has had the same issues and could enlighten me in what to expect.
sorry my first message was so short I was kind of having a melt down at the time I messaged . Lol
I am getting a little better but am feeling very overwhelmed .
Thank you all for listening !
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First of all, @Scottishlass, no one on this site ever needs to apologize for meltdowns or expressing any emotion they're experiencing. We've all been there and get it. That's one of the reasons we're here......a safe place to blow off that steam when you need to.
And I can only imagine the disappointment you feel having recurred so quickly. But your experience is not unique. It likely means you are platinum resistant, meaning the platinum based drugs like Carboplatin, Cisplatin etc. either have no effect on you or do, but the effect is not sustainable long term. They usually tell us that if you don't recur within six months from end of first line treatment then you're considered platinum sensitive. These sensitivities inform our treatments moving forward and it's unfortunate there isn't some test you can take beforehand to determine which drugs are the most appropriate for you.
Disappointing and concerning as it is, it's not the end of the world. In fact, there's been much more focus on developing treatments for platinum resistance, especially the past year, than ever before. I have a friend just at the end of a trial that includes both an oral and an IV drug, the latter specifically developed for resistant and I can tell you a year ago, when she recurred she expected, at best, to get something that might stabilize her long term. But she has a complete response to this drug mix, in other words, her cancer is gone. I'm not sure what's next for her.....stay on the drug, get something else, or just wait and see. But right now she is just elated and so are the researchers who proposed this as a last possibility for her. And of course I also expect there are others in the trial who have only had a partial response and some non at all. But the results do imply there may be a new drug coming to market. Miracles do happen, and she's such a lovely lady...I'm so glad it's happened to her. On another note though, outside of this, there are lots of other options available and I'm sure your oncologist will be discussing them with you, if he/she hasn't already. And, you do have an advantage over many of us.....your cancer may be considered aggressive, which I translate to mean the type is high grade serous...but it's not advanced. You're only stage 2a.
My recommendation though is to arm yourself with as much information on your status as possible. The anxiety and fear you feel will somewhat dissipate as you better understand the what's and why's and have a concrete plan to address this unfortunate step back in your journey. If you haven't already, make a big list of questions to address with your medical team like:
Why has my cancer recurred so quickly?
What does this mean for my treatment plan?
What does this change mean to my long term prognosis?
Are there any trials available to explore for me?
And, of course, anything for which you might have a question and need some answers.
Sad to say but for most of us this journey we're on is seldom and straight route to follow. It's full of twists and turns and surprises, but many of those very positive. I find that into my fifth year I've become more able to weather the blips than at first....for me, it's helped to maintain my sense of humour....and to know I'm not alone.
Keep us posted on your progress. I'm sure as members do in to update themselves on recent discussions those who have had early recurrence, and there are many, will be weighing in with their own experiences to share with you.
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Hi Fearless!Thank you so much for your response , it very much gives me hope! Once I have met my new oncologist and know what I am dealing with I may feel better!
I have been reading and making notes to ask questions of my doctor, the unknown is a dark place
and the Covid situation makes it even harder
when you are receiving bad news!
I am just going to take it one day at a time till
I know what the plan is !
I reached out to this site when first diagnosed got lots of information but did not participate to much as that’s just not me, but now after getting your message I do feel a little more hopeful hearing other people experiences
Thank you for all you do!
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Hey Fearless
Just a wee update! I just got back from meeting new doctor, always hard with a new doctor don’t know if you like her, can you talk to her ! She was nice!
so, according to her when cancer return this quickly it is stage 4 now but she will be doing a biopsy to check as she said when I was first diagnosed I had two types with the Stage 2a being the bigger so she want to check what one has returned!
Course of treatment is chemo every week taking Paclitaxel getting this chemo on it own and every week they are hoping to shrink and with chemo and medication try to keep it at bay!
for how long we’ll that remains the question.
I am going to have a look at this site and see what some members write about having stage 4
Was very shocked at grade 4 and her asking about
DNR.
so start chemo on Monday wish me luck and I will just take it one day at a time !
Ann
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@Scottishlass I'm so sorry to hear your diagnosis changed so rapidly. With the new treatments and combinations they might find the magic cocktail for you that will extend your life considerably and who knows what's on the horizon in a few years. So many promising new drugs and trials. I have a friend who was diagnosed with stage four cancer many years ago and guess what, she's still around and enjoying her life. I hope the same for you. Best of luck:)1
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Hi Annie1950
Thank you so much for responding to my post!
I am having a really tough time with the news but you message gives me a little hope !
Ann (scottishlass)0 -
Ann @Scottishlass
Like Annie1950 so sorry to hear of the upgrade (or maybe it's a downgrade) in your stage. Personally, I've never heard any of my gal pals mention a change in stage because of early recurrence. Perhaps it's a combination of aggressiveness and where the recurrence is. But all of us are different, and I do find some discrepancies in how oncologists interpret information. I know my first diagnosis was 3C. Came to Kingston and my new oncologist decided I was 3A, then changed that to 2B. My current oncologist and all my records today confirm I am 3C based on her assessment of my cancer. But at the end of the day I don't care if I'm 146F.....just as long as I'm treatable and they can continue to help extending my life (so far so good).
Regardless, hang on to that hope. There are so many treatments available out there and so many I know who have been given diagnoses that would imply not much expectation for a future and yet they're outliving me. Most of the information that is available reflects a very generic viewpoint so what might apply to the average may not apply to your case. Rely on your oncologist to do the best she can to keep you living longer and with quality.....that's her goal for sure. And wonderful you like the new one.
Keep us posted and hoping to hear good news as you continue your journey. We're all here when you need us. 3 -
Ann @Scottishlass
I am so sorry to hear of your news. So much to absorb. This is a great group for information and emotional support. There are some great video sessions on dealing with uncertainty by Jennifer Turner. Teal tuesdays ana teal thursdays are also great for support.
I find it helpful knowing that everyone in this group has experience with this cancer. While not a path I would have chosen, it has made me think about what is really important in my life.
Thinking of you, keep us posted, gayle3 -
@Fearless-Vol Mod and @Scottishlass
Hello. I am sorry to hear about your recurrence Ann. I am experiencing a similar experience. I was diagnosed with high grade serous 3B October 2020. I had three rounds of carbo/taxal, followed by surgery, then three more rounds of chemo finishing late April this year. I have been on Zejula since the beginning of June.
My oncologist was very pleased after my surgery... said that the chemo had worked wonders and he said everything was optimal. He predicted a long remission.
Yet, today I had blood work and my CA125 is up to 84. My last CA125 was 18 in April.
I haven't spoken to a doctor yet, as I just got the results tonight.
Fearless, thank you for your advice and encouragement for Ann. Just reading it, made me feel as though there is hope.
Best wishes for successful treatment for both of you! Susan
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@Susan i'm glad to hear my comments above have been comforting to you as well. It's one advantage of this online group that we can all review the historical conversations and glean information we're seeking from common issues.
For you, I would add not to be too fussed about your CA125. That test is very unreliable as a predictor, especially on the basis of one score. A year ago having gone a full year with my CA in the normal range but bouncing up and down from time to time I was shocked to have a score of 400 out of the blue. I had had a CT the week before so fully expected evidence the trial I had been on so successfully had stopped working. But the scan showed no remarkable change in my tumors so the CA125 was just an unexplainable anomaly. Now, if over time your CA continues to rise significantly, that is normally the flag to say more investigation (usually a scan) would be appropriate to either formally discount the CA scores or validate there is new growth to be addressed.
Let's keep our fingers crossed your CA is just one of those anomalies, especially if you're not experiencing any discomfort or symptoms.
Please keep us posted and do reach out whenever we can provide support, whether it be shared experience, or just a shoulder to lean on. You're not alone....
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Thank you Fearless. Yes, your words are comforting and encouraging! So grateful.
Interesting note on CA125. Unfortunately I also have a bloated stomach. But I won't jump to any conclusions. I spoke with an oncology nurse today and she booked me for a consult on Tuesday. Then I am guessing I'll be given a scan.
I'm hoping that the team will have alternative chemo options (that is if the cancer has recurred), since I might be platinum resistant. I will keep you posted. Again, I thank you for your support. It is so appreciated.
Susan
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