Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
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).
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).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
New here and looking for people to talk to.
Hello there. My journey with cancer began when i got diagnosed with FIGO Grade 1 back in December 2020. I had THBSO on Februray 2021. My gynecologist said the cancer was detected early and have been totally removed and that i don't need any additional treatment and i will be in every four months follow up for the next three years.
Eight months later, on October 2021, i got diagnosed with recurred endometrial cancer - HGSC. I started my first of six chemotherapy (carboplatin and paclitaxil) on November 2021 on a three weeks interval. My tumor became resistant to chemotherapy and the tumors started growing bigger. We stopped chemo at fourth cycle.
I received immunotherapy treatment (keytruda and Lenvima) on February 2022. Because this treatment just passed clinical trial and just got approved by FDA 8n the US, it was not yet available for Canada and so there was no funding. I had to buy and pay for my own treatment. I had three cycles which i paid for almost $30,500 CAD! This caused me so much stress and up until now, i am struggling financially.
The immunotgerapy treatment had to be stopped immediately after my third cycle as Lenvima became so toxic. My last treatment was March 29, 2022. I had been on treatment break since - which is causing me in so much anxiety.
On January 2022 I had a lumpectomy on my left breast for DCIS. Then i had a single mastectomy in August 2022. I gor diagnosed with ER+ HER2- Breast cancer.
My scan results and bloodworks result have been getting better. Scans, bloodworks and oncology appointments have been every three months. My CA 125 is now normal. I still have tumors but it is stable. Right breast is healthy. I have not heard from my oncologist that Iam cancer free. I am given Letrozole treatment indefinitely to keep cancers from recurring.
I am a person living with cancer. I am in the waiting period and in close surveilance every three months.
This new year, i started going back to working in person on a gradual re-entry. Energy level is still low.
i have not stopped working through my diagnosis and treatments. I have been working from home full time, except of course on treatment days and the days i feel crappy.
I want to regain my old self if there is such a thing. I am a widow for almost ten years now. I have two grown up children, they,re both in the university and i am still supporting them,
Nel
Eight months later, on October 2021, i got diagnosed with recurred endometrial cancer - HGSC. I started my first of six chemotherapy (carboplatin and paclitaxil) on November 2021 on a three weeks interval. My tumor became resistant to chemotherapy and the tumors started growing bigger. We stopped chemo at fourth cycle.
I received immunotherapy treatment (keytruda and Lenvima) on February 2022. Because this treatment just passed clinical trial and just got approved by FDA 8n the US, it was not yet available for Canada and so there was no funding. I had to buy and pay for my own treatment. I had three cycles which i paid for almost $30,500 CAD! This caused me so much stress and up until now, i am struggling financially.
The immunotgerapy treatment had to be stopped immediately after my third cycle as Lenvima became so toxic. My last treatment was March 29, 2022. I had been on treatment break since - which is causing me in so much anxiety.
On January 2022 I had a lumpectomy on my left breast for DCIS. Then i had a single mastectomy in August 2022. I gor diagnosed with ER+ HER2- Breast cancer.
My scan results and bloodworks result have been getting better. Scans, bloodworks and oncology appointments have been every three months. My CA 125 is now normal. I still have tumors but it is stable. Right breast is healthy. I have not heard from my oncologist that Iam cancer free. I am given Letrozole treatment indefinitely to keep cancers from recurring.
I am a person living with cancer. I am in the waiting period and in close surveilance every three months.
This new year, i started going back to working in person on a gradual re-entry. Energy level is still low.
i have not stopped working through my diagnosis and treatments. I have been working from home full time, except of course on treatment days and the days i feel crappy.
I want to regain my old self if there is such a thing. I am a widow for almost ten years now. I have two grown up children, they,re both in the university and i am still supporting them,
Nel
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Comments
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@Nel
First, welcome to the group. You have been through a lot in a short period of time that is for sure. If you don't have it already, you can use this link to obtain a FREE copy either digital or paper called By My Side
Cancer Canada - Support and Resources (ovariancanada.org)
I do believe that there is also a resource for Breast Cancer that you can tap into as well.
Tomorrow at 1pm we have what is called Teal Thursdays which is an online platform for you to connect with others in the group. All you have to do is click the link in the discussions to participate. The only caveat is that you need to refresh your page to see comments others have made. Most recently there is usually a black box that appears when someone has typed in a message during that time. Feel free to join. @Fearless_Moderator will be hosting it and I will be absent as I have an Oncology appt at the same time.
Now, back to you......so you are recurrent HGSC platinum resistant? Do you know what grade you are currently at?
As for the breast cancer what stage is it at? I imagine that the Letrozole is being used for maintenance therapy for the breast cancer....kindly correct me if this information is not correct.
It is good, no in fact, great, news that your CA 125 is normal and that the tumours are stable. As you may or may not know, HGSC is one of those cancers that it has a high recurrence rate and many ladies here go through various treatments to assist in managing it. Many ladies here are in various stages with their HGSC and if you have anything specific you are looking for in getting answered, just put it out there. You can also type a subject or topic into the search bar at the top to see if anyone else has asked some questions you are wondering about and have given feedback to.
It must have been difficult working and managing your treatment and side effects at the same time. Good for you for being able to do that.
It is very challenging managing this disease and work/life at the same time.
What is your oncology team currently recommending now? How are you with everything? Is there anything specific you are looking for an answer to?
I do not have HGSC so will rely on the other ladies that do to reply to similar experiences (if any). Our journeys can be similar in many ways but the way our bodies react are all individual.
Hoping you can join the chat tomorrow.
Take care
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Hello and welcome. Your story is similar to mine. Did you ask your hospital to try to get those drugs covered under 'compassionate care' from the drug company and did you apply to Trillium Benefit (I am in Ontario not sure if you are). You may be able to get some reimbursements or have the drug covered going forward. Keep advocating for yourself and financial aid. At the very least you can claim your crazy medical costs on your 2022 tax return. Did they never suggest Avastin and Taxol to you as free maintenance drugs? I am on both of those. Now we had to fight to get Avastin approved and my private insurance has been helping to pay for it. My oncologist assures me that when the private insurance runs out - as early as next week - we are awaiting a decision from the insurance company on continued LTD or not - OHIP and the drug company will step in to pay as it would unethical for them to suddenly disapprove a protocol that is showing good shrinkage of my ovarian tumors. Glad the Letrozole is working - did you have to pay for that too? Imunotherapy is my next step if T & A stop working - which it typically does at some point. Definitely consult your cancer center financial aid department and see what can be done for your expenses. Good luck!0
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@Strongwoman
Thank you for the link for the reading material. I have requested for it already.
I have attended a Teal Tea session once. Unfortunately, Monday wouldn't work for me anymore as I have started going back to working in-person on a gradual basis (Mondays and Fridays)
My HGSC was not graded or staged so I'm not sure.. I was told it was highly invasive.
My breast cancer was not staged as well. It was caught early and there was no necessary treatment after the mastectomy. Which i am so anxious because i have heardthat before when i had THBSO, but 8 months later, it recurred. But i reallyhope this is different.
Letrozole is beneficial for both endometrial and breast cancer.
I am trying to regain normalcy back into my life, that is why i have started going back into working in person again at least twice a week. My oncologist is aware of this. I am being monitored every three months. My next scan and bloodworks is at the end of this month. I am hoping that my cancer remain stable.
I am planning also on travelling outside Canada, i am wondering about the travel insurance.
I also want to chat with ladies who are living with cancer, endometrial and breast cancers. How are they managing their fear of recurrence.0 -
@BellaDonna1959
Thanks for responding.
I am from British Columbia.
I have contacted the drug company who manufactured Keytruda, their financial assistance are only applied to US Citizens. I don't know where else to ask for help. My oncologist is not sure if i will get reimbursed when it is made available at BC Cancer.
I am not in a good position financially right now.
I am given Letrozole as my maintenance.and is being covered, thank God.
Best of luck to you as well.2 -
Hi Nel - keep us posted as the more information we have the more powerful we are. Keep on keeping on - we are in the same boat - hope plus uncertainty - it's not easy.0
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@Nel
Happy to hear from you. I had a quick look at a couple of things and will pass along the links. If you have already tried this avenues...I don't know what to say but will keep thinking.
Here are links:
http://www.bccancer.bc.ca/health-professionals/clinical-resources/systemic-therapy
https://bccancerfoundation.com/
Have you looked into either of these before? The first had a drop down where there was a "compassionate care program".
If nothing else, it may be worth contacting them to see if they can help guide you.
https://cancer.ca/en/
The one just above if for Cancer Care Canada
Again, may be worth contacting to see if they can assist or direct you.
I have written before on various things to do with 'things to do' but am in Ontario. One is getting in contact with your life insurance person and asking about your policy. Another alternative would be asking about any work programs you may not know about
One never knows until we ask. Some may be a simple email and others may be worth the phone call. Just write it all down so you can remember who is who, what they said and any timeliness they indicate to get back to you.
As for travel insurance, other ladies have commented in it, just type 'travel insurance' in the search bar and you will find it.
Same goes with your type of cancer....if there is something specific type it in the search bar. For example you could use: HGSC, breast cancer, recurrence, letrozole
See what you can find there and read about.
I am on Letrozole for LGSC as maintenance therapy. It has minimal side effects for myself. Hope that is the case for you as well.
Anxiety, SADS (which worsens this time of year), grief are all things one can go through on top of our illnesses. If you feel you are struggling or need some help, reach out to your team and see if they can assist you with this. Some of those topics have been talked about here as well, so you can search for that as well.
Not trying to overwhelm you, plug away at things as you can and see what you find.
Since you are in BC if you find anything BC specific or even of interest, post it so there can learn too.
One day at a time first and you will make your way through.
Glad you ordered the book. It is useful and helpful.0 -
@Strongwoman
Thank you very much! I will explore these websites asap and will start sending emails or making phone calls right away. Thank you!0 -
@Nel
Quick check in to see how you are doing and if you have any updates you would like to share. I look forward to what you may post.
Take care0 -
Hello everyone.
After 11 months on treatment holiday, my cancer progressed and would need to get back to my treatment. My oncologist recommended that since the immunotherapy treatment helped last time, i should get back to it. Unfortunately, it is still not covered by BC Health. Because time is an essence, i have to have that treatment even if i need to shoulder the expenses again. It is not an easy decision, but i still want to be around and be with my kids much longer.
Just when i thought i can start re-claiming my life, was even ready to go to my office to work in person three times a week, now i am back to working from home again. My daughter and i have even booked a flight for a vacation abroad only to cancel it. And now i am back to treatment and it's side effects and financial challenges. Tomorrow, April 13 will be my second cycle.
My kids kindly organized a gofundme. It is a big help, but of course the funds could only cover one infusion for now. I am really grateful. I was able to pay my credit card (for my first cycle).
My medical team have been sending emails to Drug Access Navigators, BC Provincial Health, even to Merck, the manufacturer of Keytruda. For now, they were told, it's not covered for my type of cancer. It will, eventually, maybe this summer. I have sent emails to my mayor, my MP, and BC Health Minister. I have hit a wall. I will continue to send email until i get replied to. I wonder if i am the only one paying for my own treatment. I wonder if the politicians have even read my email. I wonder if my voice would even be heard.
Fighting this dreaded cancers while being buried financially is sometimes discouraging. But i am determined to keep this fight.
Thank you for checking on me and for reading my rants.
Nel0 -
@Nel, I"m very sorry for the predicament you find yourself in. Short of everything you've done and the suggestions of others I am a loss to add anything of value other than to suggest, if you haven't already, to reach out to Ovarian Cancer Canada. It may have some suggestions to try and given the scope being national, could look at BC specifically. Use this URL to connect with someone there https://ovariancanada.org/get-in-touch who can perhaps be of further assistance.
I wish you success in your search. It's challenging enough for us to have the disease to begin with but more so frustrating to see possible help and solutions out there that financially we don't have access to.
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Thank you very much. I will send them a letter.0
