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).
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Comments
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Thank you ladies for sending support and thoughts, I started having drug reactions after I had completed the chemo first time around therein lies my concern for what may happen 2nd time. I know my chemo team are excellent and will do all they can, I don't want to do this again however there is no option so I will haul up my granny panties and hope for the best. Bald for Christmas was not in my holiday planner lol but I can still rock a Santa hat.
Thank you I will keep posting my experience 2nd time around.
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@NovaScotiagirl chemo is hard. You’ve got this!
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@NovaScotiagirl I'm so sorry to hear about your recurrence. Did you have another drug along with Carboplatin the first time doing chemo? Definitely ask your medical team about alternatives.
I was given double doses of Benadryl to counteract reactions to Carboplatin. I had Carboplatin and Paclitaxel for my first line of chemo, then Carboplatin and Docetaxel for my 2nd line of chemo (first recurrence happened 1.5 years after finishing my 1st line of chemo). I'm now in my 2nd recurrence (it happened 6 months after finishing my 2nd line of chemo) and am getting Carboplatin and Doxorubicin (Caelyx). The Docetaxel gave me the most brutal side effects out of them all. I was nervous of the Caelyx because of its scary reputation, but the version given to ovarian patients is a slightly different formulation, and so far this has been the best chemo experience out of them all for side effects, though my fatigue is really increasing (I'm 1/2 way done this 3rd line of chemo). I am now borderline carboplatin resistant.
I wish you all the best. It is scary and disheartening, but can only be navigated one step at a time. I'll see my doctor this Nov. 6th to discuss the CT scan I had last week (the 1/2 way through CT scan), then chemo is on Nov 8th. I don't know the scan results yet - I refuse to look at the patient portal. The good thing is you know what chemo is like, but the bad thing is that you know what chemo is like as well! Good to hear that you have a good medical team as you start this journey again. We are here to support you too.
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@NovaScotiagirl I’m sorry to hear your news. No doubt your emotions are running high. I’m glad they are moving to treatment so quickly. I’m sending positive thoughts into the universe for you.
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@NovaScotiagirl after four years, the bastard is back!!! Grrrrr! Your worse fears realized. Of course you are sad and scared and more. That’s what this damn disease does…a brief reprieve in NED status, then false hope in starting to believe it won’t come back, and then WHAM! it does. I wish I had some helpful advice for chemo but I am currently in NED status after an initial surgery and chemo. How are you feeling overall physically? Emotionally I can tell you’re heartbroken and frightened, and rightfully so. Have you asked about anti-anxiety medication? It helps me. I hope you can get some helpful answers, and that the chemotherapy can keep the damn cancer at bay. Sending heartfelt support to you, @NovaScotiagirl ❤️🤗
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Thank you so much ladies, it is reassuring to have teal sisters who understand. My family and friends don't get it and I can't handle the sad faces . Thank you,
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@HorseGirl I think I am OK, I know there will be tears the first day. My first experience with chemo wasn't horrible and the chemo fried the cancer really quickly. Fingers crossed it happens again.
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@Hobnob thank you for the info. I did have Paxlitacel with the carbon first time and I did react 2nd round. Hoping all goes well on your scan, good luck on the 8th.
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@NovaScotiagirl I'm so sorry to hear about your recurrence. My heart goes out to you. I can't imagine how scared you must be. I had a reaction to the paclitaxel my first two rounds of chemo. The nurses told me the most important thing was to "not panic" if something happens. HA! The second time they had to give me Ativan before restarting (which was kind of okay because I don't remember the rest of the appointment OR the ride home from the hospital). After the second time I reacted is when they switched me to the Paclitaxel-NAB (Abraxane) and that one was okay but side-effects were slightly more intense.
Having a reaction is the thing that scares me the most about the chemo too. So maybe some anti-anxiety medication wouldn't be a bad thing to talk to your doctor about? I also mentioned to the nurse about how scared I was about reacting and she did spend a little more time checking on me which made me feel better.
I also see my oncologist on November 7th and restart chemo again the following week so I will be thinking about you and will send you positive and healing and "no reaction" vibes that week.
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@NovaScotiagirl im so sorry that you have had a recurrence. That is devastating news after four years. I’m wishing you all the best for your next round of treatment.
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@mcb thank you
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@NovaScotiagirl I really feel for you. Recurrence is sucks no matter how long it has been. Though currently, all I wish for is 5y of survival to see my kids into the teenage years. This is my very sensitive point - to leave my children too young to be without a mom. Breaks my heart. For myself, I could die - though I would like to live longer, I have had a great time so far.
I feel that all this Platin strategies are just a patch up and what we all really need is a good systemic therapy that really cures OC. As a scientist myself, I have great hope in cancer scientist coming up with ground breaking solution. The understanding about the different biologies of OC, tumor micro environment and how our microbiome affects how we respond to treatment ( food is prebiotic) is fascinating and has made a great jump over the last 10years.
So hang in there, like I do - today on my cycle 11 carbo + paclitacel with high dose premed so I don’t react. I believe that we have a future!
sending all my love.5 -
@Tanja I believe with all my heart you will see your children grow. I have been a single parent of one since before he was born and I want to see him find his stride, find his passion and love his life. I want to see him get married and settled and only then do I feel I can leave him. So I know we will fight as hard as we can to realize our hope.
Thank you for your encouragement and support. I believe there is a future for us.
Love and support to you on your journey
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I too believe you will see this happen too. One day at a time for now is the best way to handle your days. @NovaScotiagirl @Tanja
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Hi all,
Just wanted to update everyone! I just recently got back from my 3 week trip to Thailand and it was awesome! Pic of my fiancé and I at maya bay where they filmed the beach with Leonardo dicaprio!!
before I left I had a CT scan done, I got back and checked them and saw my doctor and looks like after 12 rounds, I have new growth in my lungs. So the chemo has stopped working. I’ve spoken to the clinical trials team at PMH and the doctors said they are going to see if I qualify for one of the trials they have which they think is my best option, and they said potentially one other trial depending on some more pathology results. I don’t have much info on the trials yet as she said when I see her again in about a week or two is when she can present me with the info if I qualify. And then I can decide what I want to do. There’s the option of another chemo called folfox that my original oncologist says we can do but then this new clinical trial doctor said that it’s about 30% chance it’ll work since my other chemo stopped working.
trying my best to stay positive!!
my fiance and I booked our wedding venue before we left, April 26th 2025, so I’m keeping myself busy with wedding planning as it’s only 6 months from now. I’m hopeful that one of these options will be the one that saves me. Fingers crossed 🤞🏻🤞🏻🤞🏻3 -
@mazupardo Beautiful pic of you and your fiancé. I’m sure you had a wonderful time!
I’m sorry to hear that chemo did not work. PMH is the best place to be to find a treatment and/or trial for your cancer! I have been staying at PM Lodge during my cancer treatments at PMH and I hear about the many rare and difficult to treat cancers being treated at PMH. Everyone holds the hospital and it’s staff in high regard and are very thankful that we have a world-class cancer centre available to us!
Stay positive and enjoy your wedding planning…how exciting!!1 -
@NovaScotiagirl I am very sorry. I had a recurrence 7 months after first round of chemo, 2nd surgery End of June and am currently in my 2nd round of Carbo/Platin. I reacted on my 2nd Carbo infusion (total 8th Carbo infusion) and this is what is expected. Risk for hypersensitivity reaction increases at 8th Carboplatin and up. I am now on premed starting 2 days prior - dexamethason, cetirizin, aspirin, famotidine and montelukast - all to suppress an allergic reaction. High dose dexa makes me somewhat irritable - but it works. I tolerate the poison. Going for round 5 on Tuesday. alternative is to switch to cisplatin or to desensitize with Carboplatin.
Novascotiagirl, you can do this and I wish for you that your tumor shrinks away.
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@NovaScotiagirl Sorry to hear of your recurrence. I was NED for a couple of years and hearing the recurrence news was devastating. Lots of tears! I am at over 5 1/2 years since diagnosis now - on my 8th treatment (including 3 trials). Other than the annoyance of some side effects to treatment, my quality of life is still good. Carbo/Taxol has been the best treatment for my cancer. I am currently in a trial that allows me to rechallenge the Carbo/Taxol combo in addition to an oral trial drug. My results after 2 treatments have been positive.
I hope all went well with your treatment on Tuesday. Try to stay positive and be kind to yourself. You can do this!
@Tanja Thanks for sharing the info on your resolution for carbo reaction. I have no idea what they are going to recommend since my reaction at my last infusion (carbo infusion #20 😵💫) so this gives me an idea of what I can expect. My reaction was nausea (did not vomit) and diarrhea. They are sending me for allergy testing. Just curious, what type of reaction did you have?I’ve noticed others have also posted their fixes for carbo reaction…thanks to you all. It’s difficult not knowing what is going to be recommended for my move forward but with all of the information everyone has shared, I feel well-informed and ready to discuss my next steps.
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@mazupardo thank you for posting the picture. What a beautiful spot! Sorry for the delayed response. I had some stuff going on so have been a bit distracted. Getting my head back in the game now.
Also congratulations on your pending wedding. I'm sure planning will provide a lot of positiveness for you.
I hope that one of the trials will be a possibility for you. I admit to not knowing anything about trials other than the information that others on this site have posted. I'm also a PMH patient and knowing that you are being treated at one of the top 5 cancer centres in the world does provide some comfort. Please keep us informed as you learn more. Sending positive vibes your way.
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Hi @BennieTBear …thought I'd check to see how you are doing. You had mentioned you were meeting with your medical team last week and starting treatments this week. I hope everything is going smoothly for you.
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hey Ladies!
I am hoping everyone is doing well! I did 3 cycles of carbo taxol. (Need to have Benadryl every time due to allergic reaction). I just had a ct scan of abdominal area and pelvis. I am a bit concerned as 4/15? Of my lymph nodes had cancer. Right now some lymph nodes around my left chest area are swollen. What are your tips to calm the anxiety?0 -
@itzewhatever I feel for you. Do you have someone you can talk it out with? That helps me. When is your next doctor appointment. Getting a treatment plan worked out, helps me as well. I am thinking about you.
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Hi @itzwhatever … glad you made it through the three cycles however the news about the lymph nodes is obviously distressing. I'm aligned with @Tanja that a treatment plan and discussion with the medical team can certainly help go a long way towards addressing anxiety. It certainly won't eliminate it however knowledge can be powerful to ease the mind. If the anxiety is taking over and you aren't getting rest talk that out with your medical team too as they should be able to provide options to help.
Do you have someone close to you that you can talk to? Ask them to listen…not provide advice. Just be there as a source so you can have an outlet for your emotions. I know that Ovarian Cancer Canada has an option to chat one-on-one with a specially trained Ovarian Cancer Support Volunteer. These are individuals who have experienced OV cancer so will know what you are going through. You meet privately via telephone or video. Possibly an option? Here's the link.
I'm definitely thinking about you and hope you will get the support you need.
https://portal.wellspring.ca/service/a1dON000000vq8LYAQ/peer-support-ovarian-cancer
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@Alwayslearning sorry it took so long to respond. I had 1st chemo on the 12th and by the 14th I was so sick . It was terrible, I have never felt so bad and don't want to ever again. I am coming around today finally. The pain in my abdomen was off the charts.
My cancer team were supportive but the breakthrough drugs just about killed me. Dramatic I know but it was horrible. I see my oncologist on the 29th to make a new recovery plan that I pray works.
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@GloHo Thank you for the encouragement, I have been very low this past week due to a very hard chemo recovery. It was awful, painful, overwhelming Torture. I am heading in the right direction now.
Chemo #8 will be Dec 3rd and hoping my team have worked out a new recovery plan.
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@NovaScotiagirl please no apologies. You have a lot you are dealing with. I’m sorry your chemo was so tough. Hearing your description brings tears to my eyes. I hope the recovery plan for your next round works. Fingers crossed.
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@NovaScotiagirl I feel so sorry for you. Bad enough to have recurrence but then you also really suffer now on chemo. what are the breakthrough drugs they gave you?
But then I thought, today is the 19th and you can already write on this blog again. So, good to know that symptoms improve after 1 week? But pain is horrible no matter how long it takes. I had bladder pain after the first chemo and a heat pack helped. Why everybody is different, maybe you want to try?
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@Alwayslearning an to all.
I went for a 3rd opinion to Berlin Charite, Germany ( I am German-Canadian) last week and learned that there the tumor gets immediately tested for all sorts of genetic markers. So, today I had a good discussion with my PMH-Onc in Toronto showing her the list and I will get more done. Again knowledge is key. These tumor genetic markers are important as they will guide whether your tumor will respond to PARPin, immune therapy or antibody drug conjugates (ADC), which is the new kid on the block.
Among many others, need to test for HDR (PARPin, MMMd (PARPinh), HER2 (prognostic markers and there are ADC), TER, CPS (PD-1 expression for immune therapy).
I also learned that Mirvetuximab is coming to Canada, strongirvetuximab is a really advocated by Ovarian Cancer Canada. This is a ADC against folate receptor alpha (FRalpha). Tumor gets tested for that marker and if highly express, this could be your drug. In my case with clear cell carcinoma for which platin-based chemo may not work as well and PARPin does not work, Mivetuximab is my best next option should my cancer recur. So, I can not wait to have it in Canada. Costs around $450,000/year treatment.
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@Tanja thank you for sharing this important information!!!
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@Tanja will this be the first time you get your tumor tested? As soon as my pathology report came back as clear cell my oncologist recommended tumor testing which I did and turns out I have a mutation.
Very common with our type are ARID1A and PIK3CA mutations and clinical trials testing out many targeted agents. It's very possible you have one of them
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