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
Comments
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@mother42275 and @Marilyn
Mother42275 - as I read and re-read your post I am first struck by words like “stage 4” and “incurable “ and “buy some time” and “Palliative Care”.
Then the emotions "scared", “fear” and “sad”. "Cancer Sucks!" (Amen sister!)
But it is your actions that really stand out for me.
- Wait.
- Intentional Extremely intentional.
- Hug
- Love
- Let nothing stand between
- Seize the day! (Carpe Diem)
- Have (a strong faith that) brings (me peace)
Wow. What an inspirational message. A raw, honest, and powerful expression of the journey you and your family are on. Thank you for sharing your story and your hope and your peace. That is what stands out most for me!
I, too, am declared palliative. I was just last week meeting with a palliative care oncologist - an amazingly positive experience. Palliative is literally the human condition, it is the time of your life between now and your death. We are in a sense, all dying - it is after all a guarantee of our human frailty. However, when you wrap it up in a "diagnosis" it takes on a greater than intended immediacy, I think.
I, too, am a woman of deep faith. I live in a fluctuating peace and the fear and anxiety that comes into my life now is a tool that I use to point me back into the peace. It does not buffer me from the pain, the fear, the anxiety, but it gives me such an anchor to ride out the storms of my emotions until I come back to rest in the peace.
May the peace and grace and hope that is the Christmas celebration surround you and your family. Many blessings.
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@mother42275 Thanks for your inspiration and encouragement. I am under the care of a palliative Dr. who is quite is amazing! My children are grown, I can't imagine having 4 teenagers in this situation. It is a small consolation that it is not genetic.
I put my hope and trust in Jesus and pray for you and your teens.
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@VSC if you look at the recent thread about Liposomal Doxirubicin (Caelyx), we were just discussing the rash/peeling skin effect of Caelyx that happened for a few of us after the third cycle. Otherwise for me it was mostly nausea (maybe carboplatin related) and fatigue. Hope you get neither side effect!
Did you find the support group out of BCCA in Vancouver? For “Women with Metastatic Cancer” - ominous name, but kind and lots of positive energy!0 -
@VSC I am sorry to hear that you are having nausea - that can be one of the worst side effects of chemo. Hopefully you have called the chemo unit and asked about treatment? I know the aim is for NO nausea, and there are lots of treatments available - pretreatment with aprepitant, and dexamethasone, ondasetron, olanzepine after chemo have worked for me when I had nausea with chemo. There are others too if those don’t work. Good luck finding the solution that works for you:-) j
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@VSC My oncologist prescribed Dexamethasone and Ondasetron to be taken 1/2 hour before chemo and the Ondasetron 12 hrs after the first dose. Both the drugs morning and night for 2 to 3 days afterward. These two drugs are used to prevent nausea from occurring. I’ve only had one round of the carbo/dox so it’s probably too soon to really know but so far no nausea.2
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@TeddybearI am on both of those, but prescribed differently. I take the Ondasetron and Dexamethasone 30 minutes before the treatment, then 4 more Dex 12 hours apart. I was prescribed prochlorazine my first time on chemo, but didn't really need them, so I have them now. I should be feeling a lot better tomorrow.1 -
Hi @JaneWest. I was diagnosed Nov 2017 3C serous. Had 11hr debulking surgery (large mass and lots of spread). Had an ileostomy and 6 rounds front line chemo. Was NED in April, had ileostomy reversal and given the all clear. Dec 2018, CA125 started climbing and CT in Jan showed reoccurrence and a tumour on my liver. So back to chemo and I am now 1/2 thru second round. So far, so good, as responding and CA125 trending down. CT next month of tumour to see if its shrinking. Was devastated by first reoccurrence (more than initial diagnosis) but have hope seeing others battle back again and again. Approaching this like a chronic disease for me is helping. Remaining stable and symptom free is paramount for me now.0
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Hi @adfab I’m new to the community as my mom was just diagnosed with stage 2 (unofficial) as we still waiting for lab results.
She has completed her first debulking surgery and they have managed to remove all visual lesions. She is currently in recovery and awaiting chemo (6 sessions to follow).
She also had an Ileostomy. We’ve been a bit surprised by a need for a stoma and so feel like we could really use some advice by those who have experience.I’ve read many articles regarding what foods to eat and which to avoid. Do you have any other pro tips or good advice to share ? Anything to help with healing and the recovery process perhaps ?Truly grateful to have a community like this0 -
Thanks so much for all the sharing. I was NED in February 2023 and now have my first recurrence 7 months later. I’m trying to live one day at a time since I do feel really healthy but I can’t stop thinking about those cancer cells growing. Treatment will start once I have symptoms outside of my Ca125 marker which is at 184 now. When do you know you have enough symptoms to warrant getting chemo?0
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@powderpuff I am saddened to hear of your recurrence. I, myself, cannot answer your question as I am surmising you are HGSC. If that is not correct, kindly let me know. I am going to let the HGSC ladies weigh in. As for symptoms warranting chemo, I am unsure if it weighs on that solely or if your CA125 level has a play in it as well. I would write down symptoms and days they occur to see if you have any commonalities or irregularities to report to your team. What did your team say as far as next steps with your recurrence?
Thank you ladies who can comment and help or give some guidance to our fellow Teal Sister.0 -
I don’t know if I’m HGSC. My dr doesn’t take the ca125 marker as an indicator to start treatment. Just sucks that I have to feel sicker before I get treatment. As far as next steps it’s to wait for more symptoms and continue to live my life. I’ve been telling myself I’m not my disease and trying not to let it run my life. My emotions go in waves and trying to be positive.0
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@powderpuff Do you mean you don't know what type of Ovarian Cancet you have? If you don't it ia time you asked. It is difficult to navigate yourself and for anyone to comment on if you don't know the type. I have LGSC and it is treated differently than high grade and some of the rarer ones.
If you don't mind me asking and sharing what symptoms do you have? How are you feeling in general?
It is difficult to navigate or handle your emotions because I feel you are sitting in unknowns. Once you know more you will have better skills to ask the questions you need. I was the one that inquired about a trial drug for my recurrence. Unfortunately it didn't work for me. I know where I sit now and know there isn't much more i van chase with my type. I have dealt and still deal with my emotions around it. I am positive you will feel better once you have some questions answered.
Hang in there!
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@powderpuff and @Strongwoman
I have read your conversation and my heart reaches out to both of you. It has been a while since I have participated in this community and I wanted to respond to you.
I have HGSOC (High-Grade Serous Ovarian Carcinoma.) It is by far the most common type of Ovarian Cancer and I agree with you @Strongwoman - it is very helpful to know what your type is as it will help you understand what is and is not available in terms of treatment.
I was diagnosed almost 10 years ago now! I am currently in my 4th recurrence and have been in treatment for it since January 2022 and am going strong, praise be to God. If you want a few more details, it is in my profile.
Each oncologist/medical centre have their own protocols and standards of treatment. And it ranges across the country and around the world. CA125 is not a reliable diagnostic tool for Ovarian Cancer, but it can be a red flag. I know of no doctor who will treat based on CA125 levels alone. I have a sensitive CA125 marker, but it my doctors use symptoms and evidence from CT scans to diagnose and treat a recurrence. So ask your oncologist for imaging when you discuss your disease type.
Anyway, I wanted to encourage you both. You are your own best advocate. Look for the answers you need. and as always, this community is here to support you.0 -
Thank you @UnPickNot.
I am curious though....you mentioned yiu had not participated for awhile but decided to for this post. Are you looking for more support? Are you wanting to help and encourage? Whatever the reason, I am thankful you have and hope to see you post or participate in the Teal Thursday chats.
Take care0 -
@UnPickNot thanks so much for your comments - I actually feel relief hearing that you have had 4 recurrences and are feeling strong. I also appreciate hearing that CA 125 is an unreliable marker and that no Dr. would start treatment based on that alone - huge relief. It's just that they make a big deal out of it during treatment so that drove up my anxiety. May I ask are you working through your treatments?
@Strongwoman - I have taken your advice and have called to see what kind of cancer I have. I don't have any symptoms yet - feel better than I ever have so is it just a waiting game until symptoms start? Thanks again for your comments0 -
@UnPickNot - I have had a recent CT scan that shows lesions on my liver of about 6cm x 6cm x 2cm but my oncologist is holding off on treatment until I have more symptoms as she wants to protect my bone marrow0
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@powderpuff Yes, I am so thankful you are going to find out what type you have. I feel it will alleviate a lot of the unknowns for you. It is also wonderful that you are not experiencing any symptoms of note. Take it and go do all the things you want to do!
As for your CT scan, are they monitoring it and waiting to see if any significant changes in CA 125, symptoms and/or CT scan? I think it is wonderful your oncologist is thinking of you and your bone marrow as well. That is so considerate of them.
You go enjoy now and let those worries go the wayside. Life is yours to LIVE!!0 -
Baaahhh!! Home now from seeing my Oncologist for our monthly meet. To find out she is ill (how dare she eh?
and had her replacement. This one, I do not prefer but thought ok, give her a second chance. Nope. I will stick with my main one from here on out. Was not up to date on my stuff. Asked me if I knew what my options were or if they had been explored if the cancer is progressing but didn't word it that way. I had no idea whether she was speaking of my cancer itself or my hydroureteronephrosis. It was the former. To be entertained, I asked if she had any suggestions.....she didn't. I let her know that I had a toxicity to MEK inhibitors, radiation is off the table and that there were no options left. She inquired about trials and I mentioned that the trials are mainly based on MEK inhibitors for my type of cancer (LGSC). That if disease was progressing than so be it. She then said and in a kind way, "So, you know more than me." I did answer "yes" to that question.
Basically I found out nothing from her. I have dropped more weight so I have been flagged if I have lost more than 10% of my body weight in a short period of time. I have actually lost 15% of my body weight. My serum creatinine has dropped to 49 from 62 and now I wait for my CA 125 level to come back. I will not be surprised to see it higher than usual. Based on my symptoms, weight loss and other findings. So, stay tuned and I will update you as soon as I know.
As for my mental state, I am good. I solely want to know what is happening so I know how fast I have to work on my projects and squeeze activities in while I feel good.
Take care my friends!1 -
@powderpuff To work or not to work. Isn’t that the question!!!
i couldn’t work during my first recurrence treatment. My next 2 recurrences happened during CoVid shutdown and I was off work because of redundancy. When I did go back to work, I was diagnosed with recurrence within 3 months. I continued to work this time with a flexible schedule and accommodations. I left work on stress leave (manager-induced!) and finally “retired “ in June. The situation at work wasn’t going to improve and I wasn’t going to add that stress back into my life. And on this one ast Monday I was approached by a former colleague to consider a position that she was developing with me in mind! So here I am, nearly 10 years after diagnosis and living with growing recurrent cancer in weekly chemo, and someone values me enough, my skills etc. to create a job just for me with full autonomy and flexibility . Now I have to decide if I want to go back to work.0 -
@Strongwoman I read your comment about your progression in your liver. Oddly enough, on the exact same day I was having the exact same conversation with my oncologist! My lesion is not as big but it is growing. What to do?
I was struck by your calmness and it resonated with me as well. Knowing fills me with peace. Not knowing makes my anxiety fly. Here for you, sister.0 -
@UnPickNot
Thank you. I am curious though. You mentioned liver to me. Did I state that somewhere else in a post or are you experiencing similar symptoms as myself?
Yes, I am calm and I know in my heart these changes are not for the good. Will have to wait for the medical evidence to show the same.
Thank you for reaching out0 -
@Strongwoman - I’m saddened to hear about your last appointment. You are in my thoughts.@UnPickNot - thanks for sharing your work experiences. I am finding it difficult to stay focused and give work 100% for sure. Work has told me that we can easily set up flex schedule and accommodations depending on treatment. I just need to find the passion and drive when I really feel like I’ve been punched in the gut.0
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@powderpuff Good morning, I am checking in from our last posts. Have you been able to find out what type of ovarian cancer you have? How are things regarding your symptoms? Any changes or still same?
How are you feeling in general these days. I recall you being a little upset and sitting in some unknowns which is tough. How are things now?
Take care of you and rest.0 -
@UnPickNot Checking in to see how things are going with you. How is working going? Is this working out for you and being able to manage with your health at the same time? If it is, you are awesome. It can be difficult to do but sounds like they are willing to work with you to accommodate your needs.
Drop us a line when you have time.
Take care0 -
@Strongwoman. I have the HGSC type. Symptoms wise I eat less, have cramping on my pelvic floor and sometimes feeling tired. I go for another ct scan Dec 12. I’ve called my dr about these symptoms but we haven’t started treatment yet. How are you feeling?0
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@powderpuff Good. I am thankful that you know the type you have. It will be easier when discussing options/looking things up and/or asking for advice on this site.
Have you had any intervention of any sort as of yet? Or are they waiting for that CT scan in December to determine your treatment options?
As for me, thank you for asking, it is very kind. I spoke with my Palliative doctor this week and she met me at Hospice as I was there and she was coming in for other patients. We discussed my latest creatinine clearance value, symptoms, treatment options and meds. She is thinking the same way I am and so we added in a 3m long lasting Hydromorph mid day and will wait for next blood work to see what it says. If it is trending downwards again then we know what we are looking at. It is all leaning towards kidney and since my left one is the one doing all the work, it will more than likely lean me towards requiring a Nephrostomy. I have put this off as long as I could but if it will alleviate the pain in my back currently, I am all for it. I have to let her know today how the increased med is going and honestly, it isn't doing a lot. I am sore and am much worse at night. I have resigned myself to the fact of the nephrostomy, not willing to share any of this with my family as of yet and am processing constantly. I want them all to not worry so much for the next month and then we will go from there. Thank you for asking.
Take care0 -
@Strongwoman and @powderpuff thank you for sharing your updates. I, too, am working through the weeds of progressing disease, with challenging treatment choices managing my comfort levels and side effects.. I’m grateful that while our circumstances are unique, we share enough that I am not alone. There is such comfort in community. I have had a good week. I intentionally framed it as a “vacation “ from cancer and treatment. Next week back to reality and decision making and treatment and well, the Ick.0
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@UnPickNot No, you are not in this alone at all. Many of us go through similar things but the timing can be different. I am thankful you have reached out and have found a sense of community here. It is what this site was designed for. I saw on TV news the other night that in the Breast Cancer community, someone has designed an app that is a ChatBot to answer questions about having breast cancer. I sat on that for awhile and I hope that it never comes to our site. There is something to be said about talking to a live person who has gone through similar events commenting and supporting another along. I find it very impersonal to talk to a ChatBot about what I, myself, might be going through. Not to mention the possibility to create new friendships along the way.
Enjoy every moment of your "vacation" and tackle the "Ick" as it comes along.
Take care!0
