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@Sandi6 Words will not suffice here. There are so many emotions that you have been feeling over the past 24 hours. I recall feeling like I was spinning when I found out a couple of months ago. It took a couple of weeks before I was able to look at things objectively again. I felt like the rug was ripped out from under me when I was told at that appt. I, like you, was not expecting that outcome on that day. So when it comes as a surprise like that, it is very shocking to say the least.
I did a little bit of digging into your type of cancer specifically so I might be able to assist a bit better. You do have one of the rarer types that is for sure. I will ask like @melissa suggested in her post if any genetic marker testing was done at any point along your journey so far. Do you know the answer to that? Your type of cancer is composed of different type of cell mutations instead of it being a singular one which makes it a bit more of a complicated one to treat. So, I would start there. If you are willing to look at anything, I found this site which is from Chicago and has a multitude of clinical trials that you may be eligible for. Here is the link for it:
https://www.uchicagomedicine.org/cancer/types-treatments/ovarian-cancer/ovarian-carcinosarcomaLooking outside of Canada may be an option?!? If not, try looking at clinical trials in Canada and see if there are any you may be eligible for. If you are, then contact that hospital or get your Oncologist to and see if there are any options left. If you don't know how to find that in Canada, I know our @GloHo has used this site multiple times and would be able to guide you. These are options I would seek out if it were myself but this is your journey and thus your decisions. There will be not right or wrong answer only what is right for you.
The biggest part of it all is now looking at what quality versus quantity looks like for you. Being prepared for the best but planning for the rest as I have re-iterated multiple times. This is not a topic we want to look at or face. Knowing what you want and don't want in the end, for me has been so helpful. I have taken most of the decision making away from the family and it is now my wishes. They will not have to think about if they made the right decision only that they are following what I want instead. Have you been assigned a Palliative Doctor now? If not, I would ask for one as they can help to implement things that can be done in the home and keep you out of hospital. I have avoided the ER multiple times by having the SRK kit at home that they assigned to me. It allows the nurses to come to my home and administer meds so that I don't have to go to the hospital. I know have in place at home in my binder (because this is my wish) that if 911 were called that I will not be taken to Hospital. I will instead be attended to by the paramedics until either my nurses can show up or a room is ready for me at hospice. The other thing I didn't know about is that if my family came home and found me unresponsive, all they have to do is call my nurses and they will come out and pronounce me and take care of the rest of it. This avoids all the hustle and bustle of 911 at the home (I have signed a DNR as well). I have experienced 911 being at my home for a death (my uncle) and he had a DNR but not on him so they had to perform some CPR and it was very traumatic for my aunt. I don't want that for anyone on my end. Like I mentioned, these are NOT things we want to face but for me knowing all of these are in place is empowering for me and with the lack of control I have over any of it, it helps.
I truly hope some of this helps you in your own journey and that you seek out what you want to seek. It is tough emotions, let yourself feel them and your family. It is part of the process. I am here anytime you need to chat. 💕
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@Sandi6 One other thing about the staging part of it. I was informed by my Oncologist that they don'[t re-stage. This info could be reputed right or wrong by others, I am only stating what I was told. My thinking on it, is that if you are entering into the end stages, I feel they are assuming you are in Stage 4. I could be totally wrong in that and my line of thinking but wanted to share that with you.
Again be kind to yourself. You have been "shell shocked" and have a lot to process. Hang in there! 🤗
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thank you so much. This is devastating and I appreciate your support. Just love your temperature blanket! A beautiful gift to be enjoyed by generations.
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@Sandi6
I am so sorry to hear that treatment did not work. As others have said, I am surprised that your Onc did not discuss other options for you…like other drug options or clinical trials. As @strongwoman mentioned, I have explored the clinicaltrials.gov site extensively for my own cancer and would be glad to help you navigate that option if you’d like. PM me if you’d like my help in finding a trial.
I would also suggest that you ask your Onc for an urgent referral to a specialist in your cancer type at Princess Margaret Hospital. If anyone has their pulse on what treatments or clinical trials are available, it would be them.
Thinking of you and am here to support you in any way I can.1 -
Thank you so much. I would be grateful for any help you can give me. My diagnosis is ovarian carcinosarcoma stage 3 or 4, since it’s metastatic
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@Sandi6 I agree with @GloHo . I just finished attending the national ovarian cancer research conference in Halifax. One of the speakers today was a woman from Saskatchewan with a very rare form of ovarian cancer. Similar to you, her oncologist reached a point where he said there was nothing more he could do. She contacted the Princess Margaret Hospital in Toronto and got an appointment with an expert in her specific type of ovarian cancer. He immediately offered her other options since he was up to date with the latest developments.
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Thanks for sharing and confirming that a PMH consult is a viable option for @Sandi6
Hi. Happy to help. I am going to PM you…I have a couple of questions.
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Thanks so much. I’m working on a miracle xo Struggling to breathe here and I’m grateful to this supportive community XO
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please do
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@Sandi6 It's been a few days and I wanted to check in to see how you are doing. That was a lot to process and you have received a lot of feedback from the gals here too. Hoping you either find a trial at PMH or get referred to someone there that is knowledgeable in your type of ovarian cancer. Please know we are all here for you should you need anything or any encouragement or to unload what you are feeling.
Take care of YOU!!💕
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ladies I made a funny YouTube short. When all we want to do is cry, how about we laugh for a sec. Self deprecating humor has always been a fav of mine xo
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Thanks for sharing this Melissa. So adorable XO
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@Strongwoman thanks for reaching out. We’re really struggling here. Trying to process this situation where chemotherapy isn’t working. Makes me feel so hopeless. It’s incredibly painful to face the end of your life and I can’t seem to get that feeling out of my head! I know I’m grieving, but I need to find peace within myself. A dear friend offered us her cottage on Lake Huron so the dogs, my husband Steven and I are snuggled up together by the fire enjoying some quiet time. I’m grateful for this group, especially Gloria, @GloHo, who has been very supportive. I’ve been making a lot of phone calls to get referrals and requisitions for alternative treatments and a PET scan since the report recommended it. I’m hoping to get on Elahere as trials show it has been effective for ovarian cancer that’s platinum resistant. I’m certainly learning a lot! Once I fight this and get back into shape, I’m hoping to help others through this journey. It’s overwhelming and truly makes us think about life in a new way. Big hugs and much love to you all. 🥰❤️🥰
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@jmbarrhaven thank you so much for sharing your story. You’ve given me hope that I’ll find a treatment that works for me. 🙏
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Thank you! That short @melissa was good!🤗
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@Sandi6 How very kind of your friends to lend you their cottage. While you are there, focus on yourself and hubby and all that nature that surrounds you.
I know firsthand how this feels and the feelings that go with it. I can say that it will ease over time. It will feel like it is all consuming. It sounds like you have made a lot of headway since your last post. Setting up a PET scan, getting on to see if you qualify for the Elahere trial. Of course, our @GloHo is fabulous at navigating the trials available and would have been awesome assistance. She is amazing! You are now headed in a direction and slowly coming out of being "in the dark" and coming into "in the know". It is a good place to be. Reasons to put a little smile on your face. You will get there. Patience and determination with a little guidance and you will find your way. Good on you. Now enjoy that cottage with hubby. We are having some beautiful weather.
Take care and thanks for the update!
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Good Afternoon Ladies!
We have had some good discussions occurring this past week. Thank you for all that have been active and responding to posts. As we know it "takes a village" to build our community. ❤️
This morning, I dashed out to do groceries as I have not had a vehicle for 3 wks. FREEDOM!!! Wow is that something eh? Glad it is done and now if I get "grounded" again, I know we are well stocked up in the house. I was also purposeful in my shopping making sure I had more food that is 2 grams of fibre or less for myself. Amazingly enough, cottage cheese has no fibre and I love it so score for me!
I had another setback earlier this week which equals for me a partial obstruction. Every time it happens now, I can feel the tension in my family rise. They wonder if I will come out of it and they all want to "help" me. Lots of times all I do is lay in bed because I am unable to function in any other manner. Is anyone else experiencing something similar with their family when they are feeling unwell? How do you cope or what tricks and tips do you have and use? I know these can be difficult conversations to have with our loved ones for sure.
How are you all doing out there? Treatment follow ups? Waiting for scans? Newly diagnosed? Recurrence? Palliative? Let us know and let us all come together to help each other on this site.
Who is out there today?
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Good afternoon ladies
Today the sun is bright and warm so I am going to wash my car. @Strongwoman glad you got your car back, the hubby was working on mine for over a week so I know how it feels to be without! As June 3rd approaches quickly I find my anxiety climbing steadily to the point where I know my body is creating symptoms... First place the mind goes is... Cancer is back. I have a sneaky suspicion that if my pinky toe begins to bother me I will arrive at the same conclusion . So I'm heading out to distract myself.
I run a list of signs over in my head that might = to still being in remission
Stable weight ( well, I gained 4 pounds but I snacked a lot in Florida and I haven't been exercising as much)
My appetite is very good/unchanged
My abdominal girth seems stable
So, this is where I am at today
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Hi.
Sorry to hear you had another partial and so glad you were able to work through it!
The tension is understandable. I think you should make a list of little things that each of your family members can do when you feel unwell. It’s natural they want to help and maybe allowing them to do even a little thing may be what they need. Put yourself in their shoes…I know you would be the first to reach out to help someone!I received my scan results on Tuesday but haven’t looked at them yet. I have been negotiating with myself that when I am able to even “think” about them without hyperventilating (a little exaggeration), then I can take a look. 🤣🤣 We had a few things on the go the last couple of days and I didn’t want to disrupt the momentum so I haven’t looked. I had actually arranged for my Onc to call me on Monday in the hopes that the results were available and I could discuss things with her. Unfortunately, the results weren’t available but she called me anyway for a check in. I have my trial appointment next week, so will be discussing with the trial Onc. I will probably look tomorrow to give me time to digest the news, good or bad, and think about what’s next.
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Oh gal @melissa you do know how to bring the humour in! Yes, it is amazing what and where our minds go if we let them. It is so difficult to "let go" and not to let our minds think we may be having a recurrence. It is even harder to get it to stop going down the rabbit hole unless we change the environment which I know you mentioned you are doing. Good for you! I was hoping to clean out my car tomorrow. I am spent today now. Grocery shopping is truly an exhausting activity! I even was able to label some things that I put away "MOM's" which equals don't touch! LOL
@GloHo Yes, I hear what you are saying. The thing is, I never know what I need except for someone just to be around. My boys are usually the best at checking in now and then and not saying much. Hubby wants to help and gets frustrated when he can't. It is a process he has to figure out on his own. I apologize if I am little too "snippy" at the time but beyond that, it is a revolving process every time. We will figure it out but I appreciate your feedback on the situation. 🤗
I admire you @GloHo Knowing that today is not a good day to look at your results but tomorrow may be is a process in and of itself. It takes a lot of work to look at things thru that lens and to be honest with oneself about it all. Do you or have you been able to identify what is the biggest thing holding you back from looking? Is it a certain outcome you are most concerned with or something else entirely? Curious, I am……
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@melissa
Yes…I go through the same thing about each ache or pain being cancer until I put myself in check and consider other things that could be happening.
It’s funny because when I was going through my serious gas issue a couple of months ago, I knew it was gas but then remembered I had cancer and then thought…yikes! maybe it’s cancer-related and took myself to the hospital. Turned out to definitely be gas but ended up in hospital overnight because I passed out in emerg! 🤣🤣.0 -
I think, until now, I have been able to write off some aches as gas/bowel but have been feeling like it is something more lately. Although, I can still connect to gas/bowel, it is happening more frequently. So I have been trying to work through that potential reality and am not sure I want the scan results to confirm things. In the back of my mind, I realize that it really could be “just” gas/bowel stuff and the trial drug is working but it’s not breaking through to the forefront.
I still have a couple of standard of care drugs to go but there is no guarantee that they will work for any length of time. The other thing I am working on is getting my Onc to refer me to a gynaecological Onc at PMH to discuss next steps - potential drug combo or another trial?? I mentioned this to my Onc on Monday and she is supportive of the referral but we were waiting to see what this scan result shows and whether or not I am continuing in the trial. I still have options and hope for the best but, geez, the mind sure does wander!!0 -
How the mind wanders. My scan is June 3rd and my follow up is July 23rd.... So, like last time they expect me to wait for my results? They are mad. It's going to be another round of Melissa leaving voicemail after voicemail with the nurse. Been feeling a little down the past few days as I heard one of the oncologists on my team tell someone that the PIK3CA inhibitors we have don't work so great. This is contradictory to what my oncologist told me back in November. She said, that with my variant of the mutation the drug they have, that they didn't have 3 years ago simply works when given to my type. I realize that even if there is a high chance that something will work it doesn't mean it will.
I've been holding on to her words since then as she said it with enthusiasm . I guess I should take what he said with a grain of salt, as it wasn't directed at me, and was more general and not taking into consideration my variant.
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@GloHo So, tough! 😔 Navigating it all and the emotions that go with it. Sometimes we do but don't want our "guts" to be right. We do to confirm that "yep that is what I was feeling and why" but don't because the reality of what it means can be hard and scary. Facing a reality we don't want to face…….yet. On the other hand, if our "guts" are "off" then when we read the scan we may have more questions than we have answers for and we aren't settled with that either. That is why I say "so, tough!". It is truly a good statement.
The other part of your post is hard too. What to do? Wait for the scan and see, I guess. Then you will know whether a referral needs to be made or you won't be part of the trial going forward. If the latter is the case, will you continue to see someone at PMH regardless?
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I don’t know how I let the results go either! I’m usually right into them…anxious to know and act!! I think I have been through this so many times that I know how I will initially react (if bad news - a couple days of swirling brain and grief) and I give myself time to work things through in my mind before looking.
That does seem like a long time to discuss your results! I was able to get my Onc to schedule an appointment within two weeks of expected results. We did this at the same time that we discussed when my next scan was expected. The Dr usually indicates a timeframe for the scan and we work from the latest date. So I have both a week timeframe for the scan and a date for the follow up/review before I leave my appointment.
I think you are wise to disregard the general comment. If your Onc was optimistic - go with that! Sounds like she is in the know of these things and would have done her own research on your variant in relation to this particular drug.
Scanxiety…I know it well 🤣.0
