Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Community Champion. 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 (mfallis@ovariancanada.org).
OVdialogue – consider joining our team in the role of Community Champion. 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 (mfallis@ovariancanada.org).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Recurrence
Hi I am 52 years old, diagnosed with stage 3/4 , BRCA negative, serous carcinoma in March 2019. Received 6 chemo, 3 pre and 3 post surgery( debulking). Last chemo was done 2 weeks ago and recent CT scan showed no sign for cancer. My medical oncologist told me today that there is chemo break now and we will wait for recurrence. He said recurrence will happen for sure because of high grade but he don’t know when . It could be 2 months or could be 2 years. Is recurrence is a must for high grades? Anyone who has similar type cancer and has no recurrence for more than 2 years. Is prognosis is always poor?
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I had recurrence after 4 years. Im currently on lynparza. Im brca neg. Is lynparza an option for you1
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Hello @balbab68.. thank you for joining the chat and telling your story. Yes, it is hard to wrap your mind around the chemo break. Seems recurrence is so different for everyone. I hope you get the support and answers you need to move forward especially if you are feeling ok and are having this treatment break.
Others have shared similar stories and you can find them by entering the topics (like recurrence) in the search bar at the top right of the screen.1 -
Thanks Laurie and Flowergirl for your inputs. So probably I just need to monitor myself. Any kind of advice what I should be doing while I disease free. Thanks0
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Hello @balbab68.. again, so glad to hear you are done the treatment... hoping you can find your way through this no evidence of disease time....Some of the cancer centres offer a moving forward after cancer treatment seminar or session.... Also, look for the book and presentation is sometimes offered:Many have found it is very helpful and hopeful... Your cancer centre may also offer a transition appointment - helping you understand where you are now and what to monitor for your personal condition... my suggestion is also to find your own peace project (anything that brings you joy) and just dance, or do what makes your heart sing!
Picking Up the Pieces: Moving Forward after Surviving Cancer Paperback – 2007 by Magee, Sherri; Scalzo, Kathy (Author)
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I was diagnosed ovarian cancer stage 3C in March 2012. Received 6 chemo ( carboplatin-taxol-avastin), 3 pre and 3 post surgery. I am NED since the end of the treatment, in December 2012. Stay positive and thanking the life to be here. I wish you the best !!4
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Hello @gratefulheart - thank you for joining the chat and posting your story - glad to hear you are doing well.0
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I was diagnosed 3B in May 2018, i had 3 chemo, surgery and 3 chemo and was in remission for 9 months. I just started chemo again, another 6 rounds. It seems harder this time, is that normal? I am on the same drug mix as last time but I guess the effects I feel more this time around.0
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Hey @love2run, I found my second round of chemo (same drug) also harder. I initially thought it would be easier because the first time knocked me down and because psychologically it was a devil I knew. I had a 'been there, done that' attitude. Mentally, it was way better but physically I found it harder. Felt more of the effects. For me, I think it was toxicity, as I reoccurred in 7 months and hadn't fully got back to 100%. It takes a while for the treatment toxicity to leave the body. Hang in there!!! This too shall pass.0
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Thanks, always nice to know that I am normal, so to speak
. I find I am more tired this time around but hopefully this will pass as well. I have been walking on my treadmill to help get over the tiredness, at least I sleep better at night this way. Are you finished your second round? 0 -
@love2run I finished my second round the end of May 2019 and have been stable for the past several months. I'm taking Lynparza for maintenance. June, July, August, and Sept my CA125 was stable (actually dropping a bit) but my latest bloodwork in showed a small increase in my CA125 (14 to 19) and I have another CA125 blood draw tomorrow to follow-up. I'm worried my CA125 may be climbing and I'm headed into another reoccurrence. A CT is scheduled for Nov to confirm. Til then, I'm just staying positive yet preparing myself for the prospect of chemo AGAIN. I feel good and have no symptoms so I continue to enjoy life as always.1
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Hope the lynparza is still working for you. I was two years in November. Lots of side effects but worth it0
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Does a rise in the CA125 always mean a recurrence? My number has climbed to nearly 3,000 post chemo, while on maintenance drug bevacizamab but I have no other symptoms and CT scans thus far have shown no new activity. My original CA 125 at diagnosis was 25,000. They want to take me off the maintenance drug because they say it isn't working if that number is rising, but I think it is working since I am symptom free and no activity. Any others out there with this experience? The CA 125 marker doesn't seem to be a reliable indicator in all cases and I worry taking me off the maintenance treatment will allow the cancer to reassert itself.adfab said:@love2run I finished my second round the end of May 2019 and have been stable for the past several months. I'm taking Lynparza for maintenance. June, July, August, and Sept my CA125 was stable (actually dropping a bit) but my latest bloodwork in showed a small increase in my CA125 (14 to 19) and I have another CA125 blood draw tomorrow to follow-up. I'm worried my CA125 may be climbing and I'm headed into another reoccurrence. A CT is scheduled for Nov to confirm. Til then, I'm just staying positive yet preparing myself for the prospect of chemo AGAIN. I feel good and have no symptoms so I continue to enjoy life as always.
I was diagnosed last fall (2018) with Stage 4 serous ovarian cancer which had already spread to my liver and abdomen. I know there will be recurrence but am hoping to keep things quiet for as long as possible. Any comments/suggestions?
Just had another CT scan last week; appointment with the oncologist this Thursday to see where we are headed. I will have a liver biopsy sometime in January to identify the specific cancer we are dealing with. No biopsies or surgeries were done at time of diagnosis.0 -
Hi @Shortone
How did it go with doctor on Thursday? I imagine you were rather anxious about it. The question you asked about the CA 125 is a little tricky as it can mean different things depending on the circumstances. Do you have further clarity after seeing the doctor?5 -
Hi Marilyn.
My CA 125 has doubled again; now about 6000. My last CT scan showed some new small nodules on my liver so they are ceasing my maintenance treatment of bevacizumab as they suggest it isn't working in light of this new activity. Hoping a liver biopsy can be scheduled in January to determine the specific type of cancer we are dealing with to be able to target it more effectively. In the meantime, waiting and wondering where we are headed and what kind of treatment will be in store for me.. Had really hoped things would stay quiet longer. Feeling good (normal) with no symptoms as yet.0 -
Hi @Shortone. Sorry to hear your news but good that you are feeling well with no symptoms. It is common that a CA 125 can go up sometimes well before any symptoms would become evident. However, your concern is understandable and the waiting and not knowing can be really hard - particularly over the holiday season. Have you shared this news with your family? Are they a good support for you? Since you are feeling so well, I hope you are able to enjoy this time with your family without too much worrying.
@adfab @laurie @love2run @balbab68 @Flowergirl - do you have any thoughts or encouragement for Shortone?0 -
Agreed @Marilyn - the not knowing just seems to be the hardest to deal with - I hope you are finding ways of support to cope @Shortone....do you have an activity that brings you comfort or peace? ...... on a personal note, I have tried to focus on how I am feeling and less on what may be going on inside, the numbers, the results, etc.....sometimes, it helps to make it through the tough days.0
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@Flowergirl I have an excellent support system: husband, sister, some very dear friends who never abandoned me during my lowest times of treatment. I am feeling good so focus on that and enjoying every day that comes.1
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Shortone, Happy to hear you are feeling great and have a terrific support system. The CA markers do not always accurately represent the level of disease. My numbers never went higher than 98 yet at diagnosis I was High Grade Serous stage 3c. Difficult to monitor disease progression but I know it's there. Let us know how you are doing and how your liver biopsy went. Thinking of you and wishing you a positive experience while you go through this. It sounds like you have an amazing approach to all the unknowns to come.0
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Hello Ladies: I am an RN which was diagnosed on Dec 20, 2018 with stage 3 ovarian cancer. My first surgery was an open and close case as I was so full of Ca if they had tried to remove anything they would have killed me.Second to Third worst case my surgeon has seen. Long story short, he begged my chemo guy to break all the rules and do chemo on me the next day as it was my only hope. It almost killed me, Cams close twice but by June I had my second surgery and was cancer free. Fast toward 5 lousy months and I’m in recurrence. I haven’t seen my oncologists yet, but being an RN I know it’s really bad news that it’s back so soon. My son is only 20 and I worry so much for him. I’m terrified to die and leave him. It would be helpful to hear from others going through recurrence. I find it so helpful to talk to people who understand. Thank you. Hope to hear from someone.0
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Hello @Camsmom - thank you for sharing your story so honestly - know we are all here for you as much as can be... I am reading hope and courage here above.
How are you feeling physically and have you been able to connect with your care team to confirm the recurrence?
Do you have a support team to help share your worries and concerns?
I'll also private message you.
You can search recurrence in the top search bar and see the other comments from those who have dealt with all those issues and concerns around recurrence... hope that is helpful for you.
Also, do you have a copy of "Still by Your Side"... you can order here: https://ovariancanada.org/living-with-ovarian-cancer/support-resources
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