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Your scan is coming up quickly @melissa I can understand where your scanxiety is coming from as well. That is a long time in between the scan and office visit or discussion with Onc. Can you view your results online in the meantime? If not, I am sure you will be persistent and get the answers you need. I would be doing the same. I would go out of my mind waiting a month to get results.
Regarding the PIK3CA inhibitors and the comment your Onc made, that is a tough one. Hard to know if that was a blanket comment or based on an individual. My mind would be wandering as well. If you were not able to go on those inhibitors, do you know what else might be on the table for you? I know you have been feeling well as of late which is great! Can you look into other research or trials regarding your type of cancer and see what is up and coming? I know the research forum held in Halifax recently had some great speakers and hopefully soon those will be in our viewing lens. I would like to see what is going on out there in research and who spoke etc. Who knows, maybe someone has something up their sleeve for me too!
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I recently learned something I did not know. Those over 65 are excluded from clinical trials. I was so shocked and disappointed to hear this. I whole avenue of treatment went up in smoke. I think its particularly surprising giving that I recently saw a statistic that the average age of diagnosis of ovarian cancer is 64. So clinical trials would not be very representative of most patients.
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@jmbarrhaven If you don't mind me asking, how did you come across this very interesting information? I bet you were shocked. Was there a specific trial you were looking to seek out?
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Good short! 🤗
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Good afternoon everyone. I always read your posts but I’m not great at responding as putting my thoughts into words isn’t my strong suit. I do care and can relate to your concern @melissa I sometimes think every ache or pain indicates a recurrence! @GloHo I couldn’t let the results go without looking my mind would always suspect the worst! @Strongwoman I’m sorry you had another partial and I can relate to the shopping for things with under 2 grams of fibre! That’s the story of my life these days. I had a phone appointment with my oncologist on Monday. She has ordered blood work (which I had done yesterday) and a CT scan to get a baseline prior to starting me on Olaparib. The scan will also indicate if the recent rounds of chemo shrunk the mass attached to my bowel to ease the partial blockage. Speaking of chemo I had a sign made as a thank you to the chemo nurses who have been so kind during my 8 rounds. I have attached a picture.
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@Strongwoman It was said at one of the presentations at the national research conference in Halifax. I asked one of the senior research scientists I have been working with as a patient partner in research. She told me it's the drug companies that have this restriction. The don't want the supposed poorer health of those over 65 to compromise approvals of their drugs. I still am making my way through standard of care treatments, but always saw participation in clinical trials as a end of care option.
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Well…your last question is interesting and complicated.
If I am out of trial and going to standard of care, then back to my Onc.
If the consult with the PMH Onc uncovers other options, and my Onc cannot provide them, then I would stay with the PMH Onc.
Other options would require approval for the use of the drugs outside the normal parameters of the drug. The financial component of this is a consideration and either the government would have to approve the drug use outside of what they have outlined in the drug formulary or the drug company would have to offer the drug on a compassionate basis.
I feel like PMH would have a better chance at getting approval than my Onc at my centre. Of course, if my Onc could get approval, I would return to her.
There is a process for applying for this type of thing…not sure how long that process is…again, feel like PMH would take the lead on this as well.0 -
Hmmm…I am 65 and in a trial. I wonder what this may mean going forward. Right now most trials say 18+ without an upper age limit. I wonder if all drug companies will restrict participation? I also think that without those of us @65+ they may not meet their participation quota (I haven’t looked at data on overall participation age). I also thought they sometimes have trouble finding participants so this would lessen the participant pool.
Okay…obviously hit a nerve with me. Would be devastating!
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@GloHo Yes, one of the other things that came out at the conference was the difficulty of recruiting enough patients for clinical trials for ovarian cancer. You're right, maybe this is one of the main reasons. I am appealing to Ovarian Cancer Canada to address this issue. If I hear anything concrete, I'll let you know on this forum.
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@Sandi6 I hope you are still enjoying some relaxation with the hubby and doggies at the cabin. I was actually just doing some research about medications that are being studied and I went back to read our thread on this forum cause I thought I saw you mention elahere. Indeed you did, have you been tested for alpha folate receptor % ? I read the drug was approved by the FDA as recent as March 2024
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I haven’t been tested but hope to get on Elahere. I’m not sure if it’s been released in Canada but I’ll travel to the USA if I need to. Thanks again for your support. I’m feeling much better today!!! I’ve been reading my medical reports and doing more research which helps mentally. I have an appointment with Dr Lohman on June 12. Hoping for success!
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@JoanEG Your gift to the nurses is beautiful. I am positive they will adore it! 💕 I have my fingers crossed for you that the chemo was able to shrink part or most of the mass on your bowel. I would like you to have less discomfort and I know you get the limited diet we must adhere to so we don't end up in trouble. Good thing though, my palliative doc said to eat "whipping cream". LOL Not joking either. She wants me fattened up that is for sure! I am not in disagreeance and will definitely buy some today. I was starving yesterday so she told me to eat more and good protein like an egg and cheese. I ate that and was hungry 2 hours later. Holy! I can't believe how hungry I am! Hope this is a sign of something good! Anyhow, I wish you the best and let us know your results once you get them. I will be thinking of you.🤗
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@Sandi6 Good to hear you have an appt coming up. What hospital did you get in to see? Or is this your reg Onc appt? What facility is testing for the Elahere? It is nice to see your post and to me it feels like it is full of some optimism this week compared to last. Whatever the reason or intention, that is how it comes across. I hope you are feeling it too. Take care. 🤗
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So a little convoluted @GloHo regarding next steps for you. I know you will navigate it as it unfolds. Keep us updated and I am around all day if you need to vent today. You were thinking of looking at your scan results today and want to support you if you need it. Let me know, 🤗
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I have taken both your posts and flagged them for OCC @Sandi6 with my own questions at the bottom to support the age and lack of recruitment participants. I will let you know if generates any feedback at all. Thank you for sharing the info you learned at the conference.
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@Strongwoman a big YES to whipping cream! I am also needing to gain some weight so I have been eating lots. My snack yesterday was a banana split and it was delicious! Banana, ice cream, chocolate sauce and whipped cream. Yummy! The nurses loved the sign there were tears all around. The chemo unit here is very small, only 4 chairs so it was easy to get to know each of them. Also thank you for the cute little meme. I love it!
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Ok…so I bit the bullet and took a look…only to find that the test result is for my chest CT not the abdomen. Good grief…now I’m wondering when the other one will be available 🤣🤣🤣 . Oh well, I needed to go through the process anyway.
Chest CT showed small to moderate pleural effusion…no other changes. Overall, good news.
I didn’t realize there would be separate reports…now I know.1 -
Good morning! Happy June!
The scans were done at the same time.
Frustrating for sure. I am used to everything being in one report, so definitely surprised. Now I wonder if the reports are reviewed by the Dr then released for patient access? If that is the case, she is at a conference until next week so I may not see it until she returns. Another possibility…she is holding it until my appointment so she can talk to me about it.
I am hoping I get to see it before my appointment. I do not like going in without having a chance to review, internalize, and develop an idea of what I want to do. That has been the norm and the only way I have been able to have informed discussions with my Onc without the element of surprise (crying, blubbering, confusion - I prefer to do that at home 😁).
The pleural effusion is not really new. It has been identified in some reports over the years. I have also had ascites identified in a few reports. I have also had diverticulitis identified once. I’m not sure if these things come and go, but would think that if they are present they would be mentioned. Maybe depends on the tech writing the report?
Ah well, no sense getting worked up about it…will deal with it as it unfolds.1 -
@GloHo I frequently get separate reports. Initially I thought it was because they went to separate doctors, but now I think that it could also be the time available to the person that analyzes the scans. You'll probably get the second part in a couple of days.
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@jmbarrhaven
Thanks. I received the chest results last Tuesday…so am curious why the other has not arrived yet. I just really hope I get to review before my appointment. I am still a little bit on the fence about seeing the results, so am tolerating the waiting well 😁.0 -
Has anyone had to ask their oncologist for a 'fit to fly' letter? How did that go? I know we are all at different stages of the disease, just gathering info. I will ask my oncologist next visit if he thinks I'm fit to fly. I think I am. Anyway, my trip is booked so I'm jumping in blind. The kids, grandkids and I booked a Nov trip to Punta Cana. I haven't been anywhere in years. I'm excited! I just hope this disease doesn't stop me from making those memories with my family. I can cancel or change if I have to as I won't know how I will be in November. Fingers crossed.
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@BellaDonna1959
How exciting! Good for you!
I have not had to ask my Onc for a letter and as you mentioned, It may be too early yet. Worth a discussion with your Onc now though so you know what s/he may need to write the letter. My fingers are crossed for you🤞!!1 -
@Strongwoman im seeing a medical oncologist, Dr Lohman (also who GloHo is seeing) at Victoria hospital which is where I’ve had surgery and chemotherapy. There’s a referral in for an oncologist at Princess Margaret hospital, a Dr Razak, who specializes in sarcoma. I’m uncertain about testing for Elahere, but am planning to discuss it on June 12 with my new oncologist.
I have to admit, this has been the most difficult week for me, as I’m clearly unprepared to exit the world. I’m feeling calmer and more at peace now, focusing on life and enjoying the moments I have rather than worrying about the future. It’s not easy, but I definitely feel like I can breathe again.
Thanks to you and all of the ladies here for your ongoing support. You make this very difficult journey easier. 🥰
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My Moms doctor also specializes in sarcoma here in Vancouver Dr.Alannah Smrke. My Mom also had receptor testing done at Fred Hutchinson in Seattle. Results were fairly quick. All the best
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@GloHo We are alike re:scan results. I want to know what I am looking at so that I can have an informed discussion about next steps etc. That if I have any emotions I get them out at home so our conversation flows and I obtain the info I need. I did not like not knowing last appt and then was floored by my CA 125 levels. It was a surreal experience that is for sure. Now, I doubt they will do another one for me and feel that I was left to fend for myself. If it wasn't for my palliative doctor, I would be alone. I am thankful daily that I have her.
In saying all that, hopefully, it was a glitch and the 2nd part of the report comes in next week and you will be able to view it. I do recall you saying you had some pleural effusion before, so that part is not alarming at all and doesn't sound like it has increased in size either. I don't know about the ascites coming and going but…diverticulitis would be one that could. Depends on what you bowels are doing/feeling at the time. So, it may not necessarily show every time. That is a good thing though! 😊
Hope you are having a lovely weekend!
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@BellaDonna1959 Good for you that you and the family are planning a trip! That is good news and something positive to look forward to. You might want to ask the "powers that be" how far in advance does that letter have to written in order for it to be valid for flying. I don't know that answer. I am sure there is someone that you can ask. I know a girlfriend of mine had to have it written in she had radiology because she would have sent off the sensors going through them otherwise. She was fine when she travelled at the time with whatever documentation she had. Remember to photocopy it just in case too! Sounds like so much fun! Sun, family, change of scenery, good food and lots of memories! 💕
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