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@Sandi6 Of course you would have those feelings. They are normal. I am not having treatments anymore and I still don't feel like I am done on earth but that is not in my control anymore. It is a very surreal feeling that is for sure.
You have 2 appts to look forward to and glean info from both professionals. That is reassuring to me in and of itself. Being able to ask about Elahere OR any other trials that you may be eligible for is so important. We will be looking forward to hearing what you learn soon enough.
In the meantime, let what comes forth, be and then let it go. It takes time to process. Be kind to yourself and plan some outings etc to get your mind off what is coming. You may find the time will pass by quicker than you think.
Take care!💕
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Hello @mymomisawarrior Interesting. Can I ask why your Mom had testing done in both Vancouver and Seattle? Any difference in diagnosis or recommendations? Any difference as to what is offered in Canada vs the USA? This is all for my own curiosity and hope you don't mind me asking.
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Today Ladies is THE Day!!!! Today is Hike for Hospice Wellington! My team is assembled and we will be all donning white. Our theme is UNICORNS!!!! This is to represent all the different types of cancer out there. My Mom made the headbands using her laser printer to make the horns and then she glued ears on them. I hand made the manes with wool and ribbons. Today we have to attach the two of them together as my parents are on their way from Belleville now for the event. I made all the "tails" too. My niece will do face make up. I picked a few little extras from the dollar store for the team and know My Mom made some signs too. My boys, niece & spouse, my nephew and his family of 4, my Mom, my SIL, my cousin & her hubby, very good friend and her son, other friends and who knows who will show up. It is grey and overcast and I don't care. Today is about what we make it.
For me, this is my way of giving back to a facility that provides me with so much on a weekly basis. Hospices receive less than 50% funding from the government so they need fundraisers like these to make them operational. It is where I plan on going when it is my time as well. I know that as a team we have raised over $7,000 and as an individual I believe I am at over $6,000. People are so generous when asked. Hoping to make it to this years Walk of Hope too.
I will send some pics tomorrow of us all! Stay tuned…..
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I’m so sorry you feel like you have to fend for yourself!! What a horrible feeling. Thank goodness for your palliative Dr!
I have not entered into palliative care yet and I, of course, have a few questions 😁. Can or will your palliative Dr order scans, bloodwork as you move forward? Do you feel like there is something that your medical Onc could offer that your palliative Dr cannot? For instance, is your medical Onc more knowledgeable about trials that may open in the near future? Can a palliative Dr refer you to a trial? Do you feel like you could call your medical Onc if there is something you’d like to discuss?
I am fortunate that my GP is part of the palliative care team in town - especially since we do not yet have a facility (summer 2025). My GP has been an integral part of my care team throughout my journey. However, I would like to think that my medical Onc would still be available to me if I wanted to talk to her. We’ll see when we reach that part of my journey.
Your 🦄 theme for your walk team sounds awesome. Can’t wait to see some pics. It has been raining here in St Thomas all morning - it seems to be slowing down a bit right now. I hope this weather bypasses you or at least eases in time for your walk. What a great way to show your support and raise money for your palliative facility. I admire your commitment and enthusiasm. You go girl!!0 -
@Strongwoman you can’t get the Folate receptor test here in Canada unless you’re in a clinical trial I believe. So she had to book an appointment with a US oncologist to get him to order the test. I have spoken with rhe Ministry of Health here in Bc and this was the response I got. “With respect to your specific request for whether Elahere (mirvetuximab soravtansine-gynx) could be brought to Canada, there are several clinical trials currently underway for this drug. Health Canada has a public Clinical Trials Database which lists information relating to specific trials. If you would like further information on this please take a look at the database here: https://www.canada.ca/en/health-canada/services/licences-authorizations-registrations-drug-health-products/regulatory-approach-drugs-rare-diseases/find-clinical-trials.html.
The decision to pursue authorization of a product in Canada rests with the manufacturer and although there are ongoing clinical trials, to date Health Canada has not received a new drug submission specific to Elahere. When a sponsor decides that it would like to market a drug in Canada or make changes to an existing marketed product, it files a submission that contains information about the drug’s safety, effectiveness, and quality (which comes from the clinical trial data) to Health Canada. Health Canada performs a thorough review of the submitted information, evaluating the safety, efficacy, and quality data to assess the potential benefits and risks of the drug. If, at the completion of the review, it is concluded that the benefits outweigh the risks and that the risks can be mitigated, the drug or changes to a drug is given marketing authorization. Thus, Health Canada and CADTH can only make recommendations based on the data for which they have received formal submission. However, as you mentioned there are some circumstances where drugs not yet approved in Canada may be accessed through Health Canada’s Special Access Programme (SAP).”
So ultimately, access to Canadians depends on whether the manufacturer releases it in Canada.
I also spoke with Immunogen with is now Avvbie. This was there response
“Thank you for your recent inquiry regarding ELAHERE (mirvetuximab soravtansine-gynx) and access to the medication in Canada.
If you would like to speak on the phone about the contents of this email, please let us know how to best reach you.
At this time, mirvetuximab soravtansine is only available through clinical trials outside of the United States. Patients may possibly receive mirvetuximab soravtansine treatment if eligible and enrolled in a clinical trial.
To review mirvetuximab soravtansine clinical trials, please visit https://clinicaltrials.gov.
On this website, you will find information about trials in various stages (such as recruiting, ongoing, and completed).”
In the end after all of our efforts made, she couldn’t get access to Elahere she tried so hard to attain. In our brief conversation with the US doctor the difference we noticed is they don’t offer topotecan 5 days in a row as BC Cancer does. They offer it week 1,week 2, week 3, break and so on. Which was my Moms last option that unfortunately didn’t work for her.
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@mymomisawarrior
Thank you for this detailed info. I kind of knew this (guessing from my research) but have not seen it written anywhere. I also knew about and checked the submission website but didn’t see anything there. Thank you so much for sharing both Health Canada and Avvbie’s responses. I know your mom was on a mission and determined to try to get this treatment. Through her sheer determination, we now have this info which explains a lot about the “process” and trying to get drugs only available in the US, including the potential cost(!!) that your mom shared with us in a previous post.
We can only hope that once the manufacturer completes their reports on the findings from Canadian trials that Health Canada will accelerate approval as they did in the US.
Again, I am so sorry for your loss. Thank you for keeping an eye on us and continuing to share such vital information. ❤️2 -
Hello All,
I have a question about partial bowl obstruction. How does one know if we have it ? I have not been feeling well ie abdomen pain that even hydromorphe does not relief.. I do have minimal bowl movement with lot of gas, definitely not normal. I have nausea and pain in lower abdomen and back. Could it be a partial bowl obstruction?
Thanks in advance for your replies
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@Bojenka I wanted to get back to you and answer your question. From what you describe, you may be experiencing a partial obstruction. I would advise to go to straight liquids only for a few days and take it in slowly over periods of time. If you start vomiting, you will either need to contact your health team (if you have nursing coming already) or go to Emerg. Are you passing any gas anally? I tend to have a lot of burping but hardly any gas below when I have them and am quite nauseated. As for pain, you can take break through meds if you have them. If the pain or anything else worsens, ease your mind and go to Emerg. If you have any other specific questions, send them to me and I will do my best to navigate you through it. Partial obstructions are very uncomfortable to say the least and they bed ridden me usually. I hope some of this helps.
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@Bojenka
I can’t answer your question but do appreciate that you have asked it! I just assumed I would “know” if I had a bowel obstruction and never thought about symptoms that would alert us and that we could act on to prevent a full obstruction. I am very interested in reading the responses.0 -
@GloHo No worries. I would be happy to answer any questions anyone has. I have not had the need to ask my Palliative Doc for any of those things at this time. I am positively sure that if she felt the need for any testing, she would order it. At this point in time, I feel my Palliative Doc has more to offer me than my Med Onc. There is no meds left for me or trials or surgeries or radiation. So, therefore nothing that the Med Onc can offer. If I saw something new and wanted to pursue it, I would have no issue with calling in for an appt and asking either. No, my Med Onc is not knowledgeable in up and coming anything to do with my type of Ovarian Cancer. I can honestly say, anything I have pursued is because I initiated the conversation and did my homework. Then one thing leads to the next etc. Like going to PMH to see if I qualified for a trial then led to more testing to find out surgery is off the table and no meds left for me. I am not sure if a palliative doc can refer me to a trial. Yes, I could call and talk to my med Onc if I felt it necessary. I hope that answers everything. Right now my Palliative Doc is the one that helps me through my crisis times and makes me as comfortable as I can be. I like that I can contact her and update her when I need to which eliminates a whole bunch of waiting time to find an answer to get me comfortable. Like this past Monday being able to text her and my nurse lead to a quick response time to get the meds into me and get me feeling better.
I hope and would like to think that you will find the outmost care from both of them when it comes time. Hoping too that "that part of your journey" is in the far off future. 🤗
I will post some pics and tell more about the event tomorrow. I am pretty tired from the walk today. Chat soon.
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@mymomisawarrior Thank you. I have sent what you said to me to OCC to see if there is anything they can do or look into it. There has to be a better or easier way and better access to these trials. I will let you know if I receive anything back. Thank you for sharing. It is through posting things like this that we might be able to exact some change. Fingers crossed! 🤞
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@Strongwoman Thank you that is helpful.
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Finally received my CT Abdomen results!! Minor progression…so I should be allowed to continue in trial. More details under clinical trials (A STUDY OF 23ME-00610 IN PATIENTS WITH ADVANCED MALIGNANCIES).
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@Gloho - where is your trial being held? Thanks good luck!
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@flory
Thanks. I’ve never heard of the Signatera test. Is it a blood test? Does your Onc use it? Sounds interesting…think I’ll do a little research 😁.@BellaDonna1959
Thanks. My trial is at PMH. I live near London so it’s been a lot of driving and overnight stays. Once I get past Cycle 4 (Days 1, 2, 3 this week and Days 8 & 15), the schedule is lot better!! Only one visit to TO for infusion every three weeks!!0 -
Not sure if this link will work
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The link works - thanks. Interesting.
Here are more details about the test and cost from the Ontario Life Labs site. Check out @flory link for detailed information about the test - ovarian cancer is identified as one of the testing cancers.
I read that Natera may offer the test on compassionate grounds so the cost is not prohibitive. It is an American company so not sure if that extends to Canadians. It says you can call the company to see if you qualify.
If anyone is interested and follows up, keep us posted.
Clinical Trials
I just checked the clinical trials website. PMH is doing a collection/evaluation trial. I do not believe the results are shared with patients. It is being collected to set up a banking system and data gathering for future research only. Seems odd that info would not be shared…you could ask Onc to check. There are no other trials for this in Canada. There is one trial in California - I “think” data is shared with patients. There are trials in France, Italy and a few in Asia (I did not look closely at these). Lots of trials for this…just not for Ovarian cancer.1 -
@JoanEG I had a scan this evening and I thought of you when I saw that the hospital still hasn't repaired the .... How did you refer to the wall? Bullet holes lol
@GloHo I can see why my team never brought up the ctDNA test with me. $$$$$ heck, they probably don't bring it up ever unless a patient does and is willing to dish it out. Oh well
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See if PMH is still doing a Bio Diva or Venus study - you will get the genetic markers at no cost. At least, back in 2022 I was able to get a full report on my cancer types and mutations out of participating in this study (Bio Diva).
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Hello Teal Sisters
Have you read about the huge trial going on in the UK for a cancer vaccine? It is for any cancer ( that has already been identified, possibly treated,) They take your cancer cells and personalise a vaccine fof it, so that if it shows up again, your immune system will kill them. Based on the MRNA Covid vaccine. Thousands have signed up for it. It is being sponsored partly by the NHS.
It will be years before we know if it works, but its the most hopeful thing I have heard this week.
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Hello ladies and @Hooodith . I saw a video on YouTube the other day about the trial that's starting in the UK. Sounds promising, I believe there are a few trials with the same goal going on with cancer vaccines.
Progress takes time doesn't it? Was thinking about how far the world of medicine has come over the past 100 yrs. Imagine, once upon a time a simple infection could have taken you out without antibiotics. A medication we often take for granted. Millions of people died, many with the thought, I wish there was a med that would cure this.. sounds familiar. Not to dampen the day, just thinking out loud.
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@GloHo That is great news about your scan. How has it left you feeling?
@Hooodith @melissa Very interesting up an coming info in the world of cancer. Is there a cost associated with this too yet? Curious is all. Yes, there seems to be costs for a lot of the genetic testing and why if your facility is offering to do it, take it because it can be quite expensive to do a panel. An up and coming vaccine seems other worldly that is for sure! Good going though on those that are headed in that direction and trying to figure something out.
I ended up with another episode early Monday morning and have been a little out of commission. The walk was a lot for me and started then. We have been more conservative with meds and am taking them more often this time and trying food at the same time while I have them to see what happens. I will begin trying to take my oral meds over the next couple of days and then hopefully come Monday we can remove the ports. Frustrating going 3 steps forward and 5 back. Alas, it is my body and what it decides to do! 😣
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WEll I am feeling well enough to post some pics from the Hike for Hospice this past Sunday. Our team is called the DIvas and we dressed as Unicorns to represent all the types of cancer out there. Hope you enjoy our pics. We won for top fundraiser individual and team and Team Spirit. So much family and friends I was surrounded by that I could feel the love all around.
This last one is my Mom and I hugging after receiving the cards with the prizes in them, She kept saying between tears "I am so proud of you!" She had me crying too. Such an emotional part of the day. Lovely day with friends and family. Yes, the girl that looks like me is my sister. She was mistaken for me at least 5 times that day she said. LOL
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