Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. 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 Peer Support Volunteer. 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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@mjmck21
How are you doing emotionally now? You mentioned 'dark days'. What helped you get through or beyond that point?
Your HGSC gals seem to have crazy high CA 125 levels. Even at my diagnosis mine was not even close to your low number. So odd how that works eh?
I will await to see your post about your CT scan at the end of the month. I will be thinking of you in the meantime.
How are you doing with your side effects? Which is the worst one for you that you find most annoying or frustrating?0 -
I also have a technical question about how we are notified about new postings on this board. I get notifications for everyone on this discussion but not when others post on other discussions. I'm wondering if there is something I can do to turn feature on as well. I missed a lot of messages over the past few months because I didn't know they were there.0
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@mjmck21
Good question. I am in the same boat. I know we are in the process of giving the site a new look. I will make sure to mention that part as I forgot about it until you mentioned it. It is super annoying to miss out on conversations because you don't know they are there. Thank you for bringing it up!2 -
@Bojenka
Good Afternoon! How does today find you?0 -
Good news @strongwoman is that Letrozole is working! Hurray!
I'll have my fingers crossed that it stays that way for a while.
I understand for the Living Legacy stuff, and while you're busy knitting or making pottery, I sure hope it puts your mind at ease and keeps anxiety away!
Trametinib, never heard of it.
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@Strongwoman
I am pretty well. Had a good night sleep so much that I made it this morning for 9 o’clock seniors exercise class at a local rec centre. The pain I get is usually late evening or when I go to bed. Daytime I am pretty good. I do like the looks of the BD cake as well.0 -
@fancy
Yes, good news about the Letrozole. Trametinib is a new drug used more commonly for melanomas. New research 2022 showed that it had favourable outcomes for those with LGSC. Was suggested in the paper to be used in conjunction with Letrozole. Unfortunately, most abandon treatment with Trametinib due to 'quality of life' side effects decisions. So, I am not positive if it will remain an option for many. We will see. Hopefully something new may come about yet soon.
Yes, it helps to distract my mind. I write as well which helps my mind. My Palliative Group helps greatly too.
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@Bojenka
How is your exercise class going? Helping? Finding some moves more difficult than others?
Pain is a fickle thing as well, when it shows up, how long it lasts, what it feels like. Can vary so much from person to person.
Thank you about the Bday cake.0 -
@fancy
Thank you for the tip. I will try that as well. I had no idea.1 -
Well my Teal Friends. I must run. I have a son to pick up from work and poor thing is cold. LOL
I will catch up on anything pertinent on my return. Please feel free to continue on with the conversation.
A BIG thank you to @fancy for joining in today and for your tip.
Take care all and have a good week!1 -
@Strongwoman
You will be looking at pockethealth CT scan results ?
Since my symptoms are back I am scheduled for CT scan on 20th March and usually I look at the report before the oncologist meeting.0 -
@mjmck21, @strongwoman, @gloho: best of luck with your upcoming results!
Have a great day to all,
Thanks for having me,
Fancy
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@Strongwoman I think I may have the highest CA number here, Not something to be am happy about. I started at almost 23,000 at diagnoses and dropped to 58 after 8 rounds of Carbo /Taxol and surgery. Started on Zejulla but last fall it started to climb again and it was over 12,000 and a lot of pain by December. I have pockets of fluid all over my lungs, all over many organs. It was terrifying quite frankly. We were looking into a clinical trial at PM but I did not have the necessary tumor markers to qualify. I was so relieved that the pain started to reduce as soon as we began new treatment but with the knowledge that I would no longer qualify for targeted medicine or some of the other new therapies. Both the pain and this new knowledge put me into a downspin. I basically freaked out for a few weeks and started, like you to get my things in order. The fact that treatment worked so fast really helped though and I have started to talk to a psychologist, to take a lot of Wellspring courses and be as active as I can. The most annoying side effects are the continued shortness of breath and up and down fatigue others have mentioned. The facial rash is also nasty. Like you I feel pressure to do things in the remaining time I have so when I cannot I become frustrated and depressed and angry. Compounding all of it is COVID. I don't do things for fear of catching it but this is not how I want to spend my time. I would love to go our for dinner or travel but just don't know how to manage it. I see others do though so not sure if am handling it well. My neutrophils are between 1 and 2 at the moment and they change weekly.0
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Have a great week everyone!
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@Strongwoman
I find that the exercise class does help me, especially mentally. At times I even forget about the cancer, even if its few minutes. Upper body, arm work is at times difficult, so I either skip it or don’t do as many repetitions. I don’t have much of stamina either but I do what I can. Everyone is encouraging and understanding in the group. Today our warm up was line dancing! Fun.
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@mjmck21
I am thankful you were able to find both a psychologist and that Wellspring has been helpful. It is important. What does your team say about going out and CoVid with your immunity? My elderly Aunt has a weakened immune system and is 83, she has had 6 CoVid vaccines (boosters). She was getting up early to do groceries etc. Her most recent hospital stay, not CoVid was most helpful to her. Whomever the physician was, came in and spoke to her re: CoVid and her tentativeness to go out in public without mask and do more things even with a mask. They basically relayed to her that it is here to stay and she needs to find a way to live with it. Germs will always be germs and the grocery store is no cleaner at 7am than it is at 8pm. To live her life and go enjoy things. I am relaying this story to you in hopes it may help you. Only you and your team know the answer to what your body is doing and where your immunity is at and advise accordingly. It seems so hard to persevere through everything you have been through to have CoVid take away some quality of life decisions from you. Seems so frustrating, disheartening for you. I do hope there is a solution and that you are able to enjoy some activities outside the home and still stay safe.
Do you have or are you looking at adding a Palliative Doctor to your team? I can definitely say that mine has helped me make many decisions that I have been faced with this past while. If my current results are not good and a short picture is painted, I will be asking her to come and speak with the family again like she did a few months ago. They were all put on the 'hot seat' and she asked them pointed questions about my illness etc and allowed them to ask any questions they had but didn't want to ask me. I was thankful she was able to do this for all of us.
Living legacy projects are good for the soul and mind. Keeps you busy and a gives one a purpose for the day. I still can't seem to imagine a time for myself when I won't be able to do things. It seems so surreal in ways and perhaps why I can't comprehend it at times.
You are doing amazing and have a good outlook. Keep up with the amazing work you are doing for yourself!0 -
@Bojenka
Yes, Pocket Health is how I see my CT scan results. My Oncologist also mentioned that as of March 1st, 2023, that bloodwork would also be able to be viewed on there. She was unsure whether their clinical notes would be accessible yet or not. It is wonderful to be able to view them ahead of time, compare to last ones and compose any notes or questions that I want to ask. I feel it makes the follow up visit with Oncology more effective as I have processed the info and not absorbing and trying to process all at the same time. For some, it causes too much anxiety to have access to this information and I understand that as well. For me, I love it!0 -
Hi everyone.
@Strongwoman oh those pics were beautiful to see. So true about going out and enjoying life because covid here to stay. I can honestly say I for one have been terrified to go out to catch covid again. My children have said the same thing mom you have to get out.
Well i did catch a cold and last week my throat didnt seem to calm down and had pain radiating up my ears and to my head. My GP decided to put me on antibiotics because of my low immune system. Was concerned it was turning out to be infection. It seemed in 3 days symptoms improved. But now is going the opposite again painful ear, throat ach. Whether its the antibiotic I'm using. I had a resistance to amoxicillin about a yr ago and was put on something different. Whether this is the case not sure
But see my GP tomorrow.
But with that said my chemo on hold while i finish my antibiotics. Disappointing but I'm ok with it...just resting and getting much rest is all Ive been doing for now.
@fancy. Welcome.
For everyone with ct results or upcoming ct, i pray it good news.
Me i guess with these bit of delays now in my 2nd week delay for day 8 and before that my day 15 omitted so had a few weeks their delay concerning to think oh no all i can see is my cancer growing. But i have to stay positive.
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I missed todays talk. I was at my oncologists appt.
Hope everyone is doing Ok. I have to be more positive. But, I can do this. LOL
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@babs272
@mjmck21
Sorry I missed everyone again on Thursday. Some lousy host I am, eh? In any event if you want to start up some conversation on the topic of fitness and exercise I recommend you start a new Discussion thread. Lots of your peers have engaged in programs they've found very helpful and I'm sure wiling to share their experiences.
@fancy
Hey my friend, hope all is well for you and you enjoyed joining our weekly group chat. Let me know if you have any questions and please feel free to join in any time.
Ladies, "see" you all this Thursday. I"ll be back in my hot seat once again.0 -
HAPPY ST. PATRICK'S DAY (one day in advance). Yes, it's Thursday March 16 and welcome to this week's Teal Thursday, our on line live chat.
No green beer for me this year. But the fridge is stocked with corned beef, cabbage and potatoes for boiling in honor of grandmother Jeanne, a late 1800's immigrant from north of Dublin. No, not because she was an especially good cook. Her gray version of roast beef and mushy veg was legendary....but she did boil a good corned beef once a year. Any one else out there with some Irish roots ?
Recovery slow but going well. Amazing how it's worse than being in the hospital so long. Had to go into ER once again on Friday and after spending 8 hours there for a quick in and out as proclaimed by my nephrologist I discovered that one of my BFF's and Teal Sister had been there the entire time just two cubicles down. Partial bowel obstruction for her but they managed to fix her up with meds. Small world though.
Sorry I've been in and out of our chats and my updating on our site the past few weeks. I'm getting at all of it slowly and sure happy that Strongwoman has been backing me up so well. I've missed everyone and there sure seems to have been alot of new developments and new members this year so far. Welcome to those who have only joined us recently. Do useour community to ask questions or share experience or just a group where you can share emotion and feelings where you know it's a non-judgement and confidential environment. It's hard, at the best of times, to keep up that happy ad positive front that seems expected of us. Being able to blow off steam can be enormously helpful; remember that.Now we're at the 1PM mark so please say hello....
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Hello AllI will be in and out of the chat. Our power just went out randomly. Weird stuff. TV was working this morning then screen was black and all I could hear were voices. Not sure what is up but will pray to whatever God's take care of such things that it will restore to normal soon.Finished watching Daisy Jones and the Six and I think there is one more episode to come out next week and then will be done. It is based on a book that got great reviews from those I know that read it. Same with Where the Crawdads Sing. Except I read the book and was looking forward to the movie purely for the scenery.As for updates, here goes. I was right about my scans etc and it explains all my pain and symptoms. Now what going forward. We have no idea if the Letrozole is working or not working and since the side effects are minimal, we have decided to keep it in for now. If in the coming months, things start to change well then I will go off it. No biggie.
Other than that, I enjoy life until my body fails me. Which I guess I haven't stated, my cancer is progressing. We don't know what will be the catalyst yet and that's okay. I know what I want or don't want. In the meantime it's a push to complete some of my legacy stuff, enjoy things I like and leave everyone with ways to move forward afterwards.
Told most people yesterday and received a flood of replies which I returned today. I had an emotional moment last night but am doing well otherwise.
On a good note, I have been invited to go wedding dress shopping with my niece, Mom and sister at the beginning of April. I am thankful I get to in case I don't make it to the wedding. That is my ultimate goal. To make it to witness that in person in Nov and will have been there for both my sons birthdays as well. If it goes longer...awesome! But for now that is what I am clinging on to.1 -
Hi all,
Just joining now. I have some better news on both the physical and emotional fronts. I have completed 3 cycles of weekly paclitaxal and bevacizumab followed by a two week break. I start cycle 4 tomorrow and I am hving some good results. I feel much better, symptoms are shortness of breath, some facial rash and nose bleeds as well as intermittent fatigue and some hair loss , although not completely.. But I feel pretty good all in all and I am able to do more activities. I have very little pain now, just some hips and back -not sure if it is Taxol related or still disease but more and more think its treatment. CBC is still within acceptable ranges inlcuding white and red blood cells but the best thing is the drop in CA125 from over 12,000 in December to 535! I realise that may sound high to some but I usually have high numbers and we were not expecting such a positive response but I will take it! IT corresponds with how well I feel. And
I have started to make plans a few months further down the line including travel, getting out and seeing more people, etc. I have started working with a naturopath who specializes in oncology and he has made some interesting recommendations that I am of course clearing with my oncologist. Fortunately they know one another from early university days. All in all I'm feeling more optimistic about the near future at least. Thinking in terms of 3- 6 months of quality of life now. Whereas in December it was weeks.1 -
Glad to see you back @Fearless_Moderator and hoping your recovery speeds up. Also @Strongwoman you have been amazing these past weeks and I have appreciated how you bring in the difficult conversations about grief and legacy. This has helped me to get a handle on some of this as well. Despite my good report this week, its a matter of time for me as well.
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