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!
Teal Tuesdays - Live Online Chat! (Discontinued indefinitely)
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hi @Flowergirl I’m doing not too bad. Got scan results and there’s a slight increase in my recurrence. No chemo plans yet coz they don’t want to give me treatments yet to affect my immunity based on current world events. As well the scan shows kidney problems with my right kidney (moderate hydronephrosis) which is basically a type of blockage of urine. So I’m being referred to urology. Feel like either running a mile away, or just burying my head in the sand. Anxiety is thru the roof and I’m trying distractions to try to help myself get thru this.
has anyone here experienced hydronephrosis, and if so can you share your experience (either here or a private message) would be appreciated. Stay safe everyone, and God bless 🦋0 -
HI @LindaSo sorry to hear about your situation and that treatment is being postponed for the moment. Although it does sound like they want to address the problem with your kidney. I understand the feeling about either wanting to run away or hide in the sand! So hard to deal with all that is going on for you and in the world!I think that if you post your question on the main discussion page that more people might see it versus in the Teal Tuesday chat. Maybe you could post in the COVID 19 discussion or start a new one about Hydronephrosis?I am about to write a post about a session we are setting up for "Ask an Expert". We will be asking people to send their questions and then we will get the answers from the appropriate expert. Do you want to send me a question to include in this?@Flowergirl - I will be discussing this you too...
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thank you @Marilyn I’ll take your advice and post a general question entitled Hydronephrosis to see if anyone else has experienced this. This will also allow me to add updates there as I go through this journey with the urologist. I’ll also give some thought to a question for “ask an expert”. Thanks so much 🦋1
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hello everyone - I hope you are all managing as best as can be during these complicated times
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Hello @beachgirl - thank you for your post
I was diagnosed Stage 3 C high grade serous April 2015, then Surgery June 2015, Chemo ended December 2015
I was NED for about 2 years - then on Olaparib for 8 months - then chemo again - a break and then another 6 rounds chemo
Hope you are managing well!0 -
Hello @flowergirl - thanks for your reply. My heart goes out to you! You are such an advocate on this site .... My prayers are with you - you are a strong and lovely soul. I am sending you lots of Strength .... Stay Strong.
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Hello @Flowergirl - thanks for reaching out.
My pathology results from the hysterectomy are now ready and I have an appointment next week at the cancer clinic to review the results and discuss recommended (chemo) treatment. I'm very nervous. It appears to be more serious than originally anticipated. The surgeon has advised it is a stage 2 grade 3 clear cell carcinoma. I'm not sure what I should be asking the surgeon when I go in. Any tips?
I also wanted to, but forgot to ask about the peritoneal flush results. Have any of you tested positive for this?
So many questions...so many worries.
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Good evening everyone
I hope everything went ok for you @Tinazzie... were they able to provide you with a treatment plan?0 -
Hello to everyone recently on the chat - I hope you are all managing well and able to get the supports you need at this time. Check in when you can to let us know how you are doing today. Nice to see some new posts.0
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Hello everyone - welcome and I hope you are all still finding a way to manage during these changing times!0
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Thanks Flowergirl! Super kind of you. Had my MRI yesterday afternoon and got a call at 7:45 this morning. Needless to say I was a little fussed to get a call back so quickly. I now have a cyst on my right ovary... originally it was the left they were concerned about. Anyway, they are not concerned about either of them... called follicular cysts I think he said. (Unfortunately the dr called when I was driving with my girls to the orthodontist... and my girls did not know I was going for an MRI of my pelvis, so the chat was very quick).... As an aside, I do have MS, so have had a few MRI’s for that... so I just did not elaborate that I was having an MRI for something else and the girls thought my MRI was for MS monitoring. I did not want to worry them and would have told them if needed). I am still to see the OB as these cysts are causing pain, so the next step is to stop ovulation. (Oral birth control).I do wish everyone the best and appreciate the support I received while I was waiting to see what my results were. Thank you!0
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Hi everyone! It has been awhile since I have been on.0
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Wishing you all the best @CDNGirl - hoping you get your answers soon... welcome back @CountryLiving... hope you are managing ok with those side effects.1
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Thank you for checking me out. I have tolerated the two chemos I had well. I am pretty like the normal me with God’s Grace and many prayers behind, I keep my walking and exercise every day, cooking myself high protein food as well. Today, I will have my third chemo. People said the third and fourth chemo are the toughest among the six chemos. Can u and others share the experience?0
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Just heading toward my final chemo (June 8) for this second round. (Started March 16.) Different mixture this time: carboplatin and calyx. No hair loss and didn't hit me as hard this time, although I was stronger heading in than I was when diagnosed two years ago. Not sure what kind of maintenance regimen to expect. CT scan June 22 and I'm supposed to see the oncologist June 25--not sure that will happen unless things change with the pandemic restrictions.0
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My Chemo is done... very allergic and anaphylactic but the chemo nurses were excellent with me. Didnt think I could get through it but I did and it is over. Very fatigue still and frustrated I dont have the same strength yet (I like to be out in the garden) but I am improving. 3 month check up in 2 weeks. Hoping all is good.
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👏👏👏CountryLiving!! Have good rest. 💪Pray that you have a speedy recovery. 😊May gardening heals u further. 🌺1
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Hello @lavender @Shortone and @CountryLiving... thank you for sharing your updates. Yes, it is those side effects that tend to give us so much grief. Wishing you good luck with your next sessions @lavender - sounds like you have a plan and are managing well. The medical team is there to help you along!
Fingers crossed for you @Shortone for your next scan... I hope you get the answers you need (on a personal note, scans and bloodwork are being done here on the prairies followed by phone appointments with the medical team.. especially if that scan depends on course of action for treatment)
@CountryLiving, so glad you had a good outcome with that nursing team.. they really can make a big difference in a crappy situation sometimes. I feel your frustration when the mind says yes, but the body says not today....you've got it right; I try to head to the garden for much soul healing and that seems to help calm the racing thoughts and put a smile on your face. Sending that to you all!0 -
Good evening everyone - welcome to the new chat participants... I hope you are all doing well as can be during these challenging times and changing circumstances. Here is hoping summer weather is on the way to you where ever you are across the country.1
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Hello everyone - have completed round 2 of chemo (Carboplatin & Taxol). I've been able to tolerate it so far, but have intense joint and back pain. The worst days for me with both rounds were day 3 to day 8. Round 3 is coming around the corner and it scares me. Have also been feeling a lot of anxiety and get startled easily at the slightest sounds. But all in all - hanging in there and hoping for the best.0
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Hi @Tinazzie...sorry you are having to deal with those side effects.
I can offer to you to keep your medical team updated so that may be able to help you ease those pains. For me, I find a hot shower may help and sometimes a heat pad or hot water bottle. Some women have shared day 4,5,6 are common for most stiffness/side effect issues. I hope you get the supports you need for the anxiety as well. On a personal note, psychosocial support team was instrumental in helping me cope with everything.
know you have people in your corner0 -
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@Flowergirl
So sorry to have missed the call last evening. Silly me missed the CT and dialed in at EST by mistake. Brain fog LOL! Or just an outcome of multitasking when I read your message. Next time for sure.
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Hi @Tinazzie....so sorry to hear you're having those side effects from the chemo. For me, it was the Paclitaxol that caused similar joint and muscle pain and spasms. I was eventually taken off that drug but for interim relief I found warm showers/heating pads as also suggested by Flowergirl helped and an Advil with 2 Tylenol (although recommend you consult with your doctor before taking any meds, even over the counter). The real key is making sure your care team (especially your oncologist and the chemo nurses) are aware of any side effects after or discomfort during infusion. They are there to help make it as comfortable a process as possible and knowing how your body is responding is instrumental in getting the right mix of solutions and drugs to manage effects. So don't feel you need to grin and bear it. Open and clear communication with those involved in your treatment is key to making the experience as positive as possible. Wishing you the best....1
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Hello everyone - Hope everyone is having the best day possible - if you are around this evening - join in and we will meet you back here for Teal Tuesdays at 7:00 PMCST.
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Hello everyone - hello @ and @maggiemae0
