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).
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
Comments
-
Feeling the love, support and encouragement! Thanks everyone! 🤗
1 -
@mcb Overall, it sounds Iike your results are positive and you’re ready to move onto maintenance. Try not to sweat the three-week wait…it will go by quickly. I always feel uneasy between treatments…chin up!
I hope you can get the seroma discomfort resolved soon. I’ve never heard or experienced it. How long have you had it? How does it get fixed?
0 -
Did you have an opportunity to ask about trials for future?
I suspect (hope) they will do whatever they can to keep me in the trial given the positives. It is only a six-cycle trial, so only three more to go. I am curious as to what they are going to say/do given my reaction. The carbo/taxol is really kickin’ my butt this time round or I’ve forgotten my experience since it’s been a while since my initial two lines of chemo 🤣. I am giving myself a week without demands/plans following treatment so I don’t expect too much of myself and I can give my body whatever it needs to get through this - mostly sleep 💤.
1 -
@GloHo I can imagine that you must be feeling pretty wiped out. This time last year I was nearly through my frontline chemo treatment and it really kicked my butt. Don’t be too hard on yourself if plans/demands can’t be met! You might need more than a week, so take it easy! Sending hugs. 🤗
0 -
I did ask to be considered for clinical trials and my oncologist said she would keep that in mind. She takes part in weekly meetings with someone in London who manages that. I’m being seen at the Grand River Cancer Centre in Kitchener but my actual treatment takes place at a satellite hospital closer to home. I assume London would be taking part in the same studies as PMH but maybe I should make it clear that I would be willing to go to Toronto.
The seroma likely formed after the removal of a tumour that had grown into my abdominal muscle. They are fairly common after breast and abdominal surgery and usually get reabsorbed on their own but sometimes they need to be drained or surgically removed. It’s hard to say how long it’s been there, probably since surgery. I guess I just thought it was normal to have a big belly.
Do take all the rest you need, guilt free. A duvet day, with a few short strolls to keep you regular, are definitely in order. When the TV asks if you’re still watching, it’s probably time to move lol.0 -
Thanks for the reminder. I do get despondent around this stage and just want to get up and go! I am sitting here contemplating going to the dog park. Fortunately, hubby is coming with so I can do some walking and rest in the car when I’ve had enough.
0 -
@mcb I would definitely mention that you’re willing to go to Toronto. PMH has the majority of trials. My home clinic is London and I was able to do one trial there but am now in my second trial at PMH for studies not available in London. My Onc in London would consult with someone at PMH before each of my appointments to determine if a trial was available. When something popped, I was referred to PMH immediately and we got moving very quickly on registering for a trial. I am at a different stage of journey than you are and had to move quickly - keeping an eye out right now for potential trials is a good move on your part. Most trials have a pretty long window to register so you probably wouldn’t have to register immediately. Gives you time to weigh standard of treatment vs trial, in consultation with your Onc and/or PMH Onc referral for consultation, and when a trial would be best for you. Does that make sense? (Chemo brain here 😵💫)
I hope your surgeon calls you back soon. Keep us posted on how the seroma will be resolved.
I do get up and move in the hopes of keeping my bowels moving. I had two bouts of diarrhea when I had my reaction to Carbo - really cleaned me out. Plus I’m on a low fibre diet so things are just moving slowly. Although I don’t “feel” constipated, I’m going to try to stick to more fluids today and not introduce anything else to my bowels🤞.
1 -
Hi everyone. I thought I'd check to see who may be out there and wanting to 'chat'. It's a rainy and cool day in my area (I'm on Lake Erie, an area called Long Point). The weather isn't helping with my mood. I was at PMH for my monthly bloodwork/Lynparza (Parb inhibitor) check in last Friday. My CA-125 had risen to 21 (was 13 last time) however my average since my first chemo in March/'24 is 18. Of course the 8pt rise made me very nervous but my medical team has repeatedly assured me that I'm well within "my range" and they'd be concerned if it was tripling and/or above 35. Still, any increase makes me nervous.
Additionally I'm having some unexplained pain in my right pelvic bone. Non stop burning. I'm getting a CT scan done next week. I had to go to my GP for that request as PMH medical team said the correlation between OV cancer to bone metastasis is rare so not something they would investigate. I did have a CT scan done in August which showed my pelvic area was all fine however, as we all know a lot can happen over a few months. So my anxiety is high. I'm very fortunate that my GP is so supportive and willing to support my "crazy". I've actually got it booked in Buffalo. There's a great spot there that takes Canadian requisitions (self pay of course). Results are sent to the doctor in 24 hours (plus you get the scan on CD when you leave). So I'm hoping by Wednesday of next week I'll have some sense of what may be going on.
So that's my world. How is everyone else doing out there???
1 -
Good afternoon @Alwayslearning and everyone. Nothing much happening around here this week. In my eyes that’s a good thing! @Alwayslearning I hope the CT scan provides you with some answers and peace of mind.
0 -
@Alwayslearning That is scary, those darn markers keep us up at night! I’m glad you are getting a CT quickly, but it is a shame you have to pay for it. Do you think the burning sensation could be neuropathy from your treatment or does it feel different? You are the expert on your body so don’t let anyone dismiss your concern.
All the best,0 -
hi @mcb .. I’ve had this issue pre my cancer diagnosis however I’d have it for a day or two then nothing for months. It was investigated years ago with everything being normal. The pain has now been on-going for 3+weeks. It could be related to treatment, meds etc. There’s been so much in my system this year who knows what could be causing it. I’m just happy I’m able to get the CT done so quickly for my own mental health. Thanks for the support!
0 -
Good Afternoon Ladies.
I apologize for not being in contact lately. Last week was a big emotional roller coaster for me. My friend from Hospice passed last Thursday morning and I attended the little service they do when they leave the premises. My elderly Aunt went into Hospital the same day for other issues. We found out our neighbours had their grand baby born. We found out that our application for the house we were looking at was going well at the same time. Nothing firm but heard from them which was better than the crickets we heard from the last people. So I was all over the place emotionally and physically too. I apologize I could not have been there for all of you at the same time. I did not have the capacity to do it. I am still getting on my feet from it all.
So, we have had some activity out there regarding recurrence etc, I feel for you all and hope you all get everthing settled soon enough. It is hard navigating the waters even when we feel good. I am thankful for all you Teal Sisters out there supporting one another. Definitely shows sisterhood and support in my mind.
I have had another bout of bowel issues that I am getting over which complicates things slightly when trying to be one's best self. I am slowly coming out of that as well and am taking it one day at a time.
On a good news front, my youngest son got his "G" license this Monday so we are all happy about that. One less thing to worry about.
Then there is deciding about the tree, Do I put one up, do I not? I would like one more normal Christmas in the home but that depends on what the LTB says on Dec 2nd. So much to think and do still, Waiting for the Jeep to get snow tires on today and oil change. Yes, it is apparently that time of year again. Better to be safe than sorry.
So, who is out there and wants to chat today?
3 -
Good afternoon beautiful Teal sisters! I’m at Princess Margaret hospital in Toronto waiting for a CTscan…Hoping for good news, although it’s likely too soon to tell if this new drug, keytruda is working.
How is everyone feeling?
1 -
@Strongwoman Sorry to hear all you have been going through lately! That’s a lot to process in addition to dealing with your own health issues!! Geez. You could do a compromise for Christmas…put up the tree but don’t unpack your home decor🎄. Dec 2 isn’t that far away…decide on the home decor when you hear from LTB 😁.
@Sandi6 Since Keytruda is immunotherapy, you will likely not see the effects for a few months. I found the wait difficult but tried to stay positive. How were your blood counts after your first treatment? When is your next CT? With the Xmas season upon us, I’m sure the time will fly by with all of the merry festivities!!
I am in week 3 of my trial schedule which means no treatment and a week off the oral trial drugs. After getting through the first week after treatment, I start feeling more like myself and am feeling pretty normal right now
I was thinking about my Benadryl sensitivity and reflected back to my last treatment. It’s actually pretty scary…I do not recall leaving the chemo unit and getting on the shuttle bus. Someone woke me on the bus when we got back to the Lodge. Then I do not remember going from the bus to my room. I remember arriving in my room and lying down…slept for 2 hours and then got up and had a small bite to eat and went back to bed again. Is it possible that I blacked out? Or was I just so tired I can’t remember some parts? I was telling my oldest son about my reaction and he is now insisting on coming to pick me up after treatment. Probably a very good idea 😁.
That brings me to my next treatment…first, will my blood counts be ok so there’s no delay? Second, what is the Dr going to recommend for the move forward since I had that reaction to Carbo? I am also waiting to hear from the allergy clinic at St Mike’s. The Dr sent a referral…not sure if that is a must do before next treatment. I’ve let my nurse know that I haven’t heard from them yet. So, I wait.
0 -
Also wanted to share our garage door cover. ‘Tis the season…🤣🤣🤣.
6 -
Good afternoon sisters! @Strongwoman I’m so sorry you have had so many things to deal with lately! I have to admit I was worried about you! I hope things work out for you in the housing department and as for putting up your tree if it brings you joy then do it! I never decorate until December. I’m a bit of a minimalist and my house always seems cluttered when I decorate for Christmas, lol.
@Sandi6 sending you positive vibes for good results on your CT scan.
@GloHo that Benadryl knocking you out like that sounds a little bit scary! I had a very bad reaction to the carbo so they had me taking 30 mg of Dexmethasone 12 hours prior to chemo, another 30 mg 6 hours prior then they would give me an IV dose when I was in the chair as well as Benadryl and some other thing in a syringe with a red label prior to starting the carbo. They also started the infusion as a very slow rate then gradually increased it every 15 minutes until it was a full flow. It meant a very long day in the chemo chair! I think it is a good idea to have someone pick you up after your treatment and I hope your oncologist is aware of the sensitivity issue!
As for me I’m feeling really good. My blood work is good and my CA125 is staying at 7. I have had no side effects from the Olaparib and I am almost back to my goal weight! I have been gaining the weight back steadily over the past 3 months so I’m feeling very happy with how things are going right now.
3 -
@JoanEG It sounds like you are doing great! What wonderful news!
I have been telling my Onc that Benadryl knocks me out but it seems to be a requirement for Carbo. I actually negotiated a single dose for my last infusion. They agreed since I had not had any signs of sensitivity in my previous two infusions. On reflection, given my reaction, perhaps having only the single dose was not the best idea on my part 😵💫. I also did not realize how Benadryl affected me other than knocking me out. In previous treatments, I have usually had the opportunity to sleep it off in the chair. Carbo is the second infusion and only half an hour. They IV the Benadryl prior to the infusion and the effects are very much present when my treatment is complete.
They do give me Dex via IV but not the 12- and 6-hour oral doses as I had in my first and second lines of treatment.
I really do not want to move to an alternate to Carbo because I am seeing positive results with this trial combo.
I am sure we’ll come up with a resolution as this is quite common for Carbo. I have even been thinking of asking them for a bed in the phase 1 clinic or even a chair in Convergence for a couple of hours after treatment so I can sleep it off. 🤣
Thanks again to everyone weighing in on my Carbo reaction. I appreciate your feedback and support. Your experiences give me some ideas for options to discuss with my Onc. My Onc and I have lots to talk about!
0 -
Hubby and the boys went to Detroit for a football game last weekend. So I decided my son’s girlfriend and I deserved a nice lunch. I took her to Pinecroft - a restaurant, pottery gallery and studio. I love the atmosphere of this restaurant - literally in the middle of the woods - very quaint.
3 -
@GloHo remind me..are you at PMH for treatments? One of my chemo nurses gave me great advice to ask for a bed when I register. There’s no guarantee you will get one (vs a chair) however I did for 5/6 chemos. Similar to @JoanEG my pre meds were so long (2 hours) even before chemo started so I was typically there for 6-8 hours. The bed was a godsend since you were also in a room on your own. Sharing if that helps you or anyone going forward.
0 -
@Strongwoman that’s a lot of ups and downs. Sorry for the passing of your hospice friend and for your health issues. So tough.
As for Christmas, do whatever your energy and your heart tells you to do plus enlist your family for help if you can. Engaging them may make it that much more special. I hope whatever you choose gives you some joy. You deserve it1 -
@Alwayslearning 6 to 8 hours for me also. I didn’t mind as the chair was comfy recliner, I always had my iPad and a book and the nurses kept me well supplied with snacks and drinks 😊.
1 -
@JoanEG Thanks for clarifying. I totally understand the distant memory sentiment!🤣
@Alwayslearning Yes, I’m at PMH. Thanks for the advice re asking for a bed. I actually prefer a chair and I didn’t want to tie up a chemo space just so I can sleep off the Benadryl after my infusion 🤣. I may have to reconsider depending on my move forward - so good to know.
I’m in chemo for 4-5 hours now…so what’s a couple more hours if needed!!
1 -
Hello everyone!
What's everyone up to? Deciding on holiday plans? Treatments going well?
What is on your mind this week?
0 -
hi @Strongwoman
I'm in limbo now, waiting to hear from the drug access advisor about funding for PARP inhibitors. It’s unnerving being without treatment for 6 weeks and counting. I still have some residual nodules after chemotherapy and I’m concerned that they will grow without any pressure from treatment. I had postponed making a social media post hoping I could say I was NED.
Fortunately, it’s easy to keep busy at this time of year with crafts, projects and gift gathering. I joined a walking group and will start an exercise program offered by the University of Waterloo. My hair is starting to grow back! I wish I could choose eyelashes over chin hairs 😄1 -
@mcb is this your first time taking the Parb inhibitor? I’m curious about the delay from a funding perspective. I’m 3 months in on Lynparza and treated out of PMH. The doctor and team managed all the access to funding. Also if it puts your mind at ease I was told the inhibitor needed to start 8-12 weeks post your last chemo so you are certainly well ahead of that.
So glad your hair is coming back. My eyebrows returned shockingly fast and eyelashes within a few months so I wish that for you too!!@Strongwoman thanks for keeping us connected. My pelvic bone CT for issues I was having there came back negative for any lesions or cancer related items however sounds like it’s arthritis or nerve related. The radiologist recommended an MRI for further “characterization”. My GP and I didn’t feel that was urgent so that’s scheduled for the new year. Right now I’m in Florida (we are snowbirds) returning before Christmas for my next bloodwork/oncology meeting at PMH (routine Parb checkin). Hoping my red/white counts all continue well enough for me to continue the inhibitor and no surprise increases in CA-125.
On a positive note my son got engaged this week. We are thrilled!!Be well everyone.
1 -
Hello beautiful Teal sisters,
I’m in the midst of my week off from treatment and the heavy fatigue is lifting enough for me to get some Christmas decorations up. It’s always been a favourite part of the holidays for me, and I’m feeling grateful to be alive and able to celebrate this year. I’m experiencing diarrhea and vomiting which is taking a toll.
‘We’re trying to get organized for Christmas since we’ll be at PMH December 23 & 24, so we need to be prepared.3rd round of Keytruda on Wednesday and am still awaiting ct scan results from last Thursday .
Enjoy this season as best as you can. Love and support 💝
1 -
@Sandi6 it takes a lot to see joy when you are feeling crappy so well done. I hope the CT results yield a positive outcome.
1 -
Waiting is always hard! I totally understand the worry re not getting treatment and the concern related to that. My funding for Zejula was handled by my nurse practitioner and it took about 7 weeks.
Sounds like you are in very good health otherwise. Good on you for walking and exercising…especially this time of year. I just want to hibernate!
It’s always nice to have your hair growing back! Thanks for reminding me about the facial hair!! Guess I will have to contend with that AGAIN!0 -
@Alwayslearning Hello Snowbird! So glad to hear your CT was clear of cancer and that you are going to follow through with an MRI in the New Year to try to figure out what is causing your discomfort.
How often do you get blood work follow up for Lynparza? How have your counts been so far? Hoping all counts are A-OK for you and that your CA125 remains stable!
What exciting news that your son is engaged! Have they set a date yet? Something to look forward to!
Enjoy the Florida sunshine ☀️!0
