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).
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
Comments
-
@Belouche1 Did they say why you were not approved? Like "didn't meet the criterium" for example?
I am curious as to why more chemo would be suggested when LGSC does not respond well to it the 2nd time around. I am on an oral drug called Letrozole which is usually what they go to with a recurrence. Side effects are minimal. I am not a candidate for more surgery, radiation and chemo rounds will not respond.
I have spoke to you yesterday regarding the Trametinib.
There are some side effects to Trametinib which include skin rash and if you go on it, let me know as I will define when to seek medical help before it gets really bad. Mine took wks to get over and was so sore that even the wind on it hurt it.
What are your thoughts on everything?1 -
@Tinazzie Welcome back! Nice to see you posting. How are things going with you currently?0
-
The doctor told me that the medication has not been approved by health Canada for ovarian cancer- just for skin cancer along with another médication - i havé heard about Letrozole0
-
For those who may not know my back story, I will share a little, so that I can help answer any questions, or give hope to those who need it. I was diagnosed with ovarian cancer by chance…luck? In Jan 2020. This was after a regular mammogram, followed by subsequent breast scan and then biopsy, confirmed I had breast cancer. I happened to mention that I had been having pain around the right side of my abdomen and asked the surgeon if she thought it might be a hernia. After examining me she didn’t think so, but, said, “since you are here anyway, let’s send you for an ultra sound”! This would never happen in today’s back logged system, but I’m so grateful that she did that. Immediately after the ultra sounds, I was sent to the CT room for another scan. Both scans confirmed, not a hernia on my right but a tumour in my left ovary. And thus the journey began.
2 -
@Belouche1 I am in Ontario and saw a Gyn Onc down in London. So, that statement is not true. It is still in trial phases and yes expensive and that may be why? I am not sure. Yes, Trametinib is used primarily for skin cancer but NEW research came out last year on it treating LGSC. I will find the article for you and post it.
Letrozole will have less side effects than the Trametinib and is more cost effective. What are your thoughts now?1 -
If it is an hormonotherapy, i tried it at one point but didn’t work for me0
-
@Belouche1 See above for the link for Trametinib
Letrozole is an Aromatase Inhibitor.1 -
So was yours reimbursed and if so, by whom and would you go back on it or you had too many side effects - thanks so much0
-
Hello all. Sending all good thoughts to @mjmck21. ❤️
I am back from an amazing vacation in Portugal with part of the family. Had my first round of daily (5 days in a row) then two weeks recovery. Tolerated the Topoecan fairly well. Tired, and nausea by the night of day 5 but not bad at all. This is my last single agent option after the Gemcitabine didn’t work and I had significant progression, a large new tumour and metastasis to the bladder. We are at the point where the best we can hope for is stability. 🤞. Had a paracentesis Tuesday with relief. Another 8.5 pounds drained. My hernia will not go back in when the ascities is large volume and it is painful. Having a conversation with my palliative doc tomorrow about possible repair. I feel okay and am happy to be able to still do most things I want to do! Wearing clothes with the ascities is so uncomfortable so I am hoping this new treatment will get it under control 🤞.
On a very hopeful note, I am having an assessment at Princess Margaret with the doctor I did my clinical trial with. Even though I am no longer eligible for a trial we are hoping she may have some brilliant ideas. i want to try Keytruda. Approved in Canada for various things but not OC. Approved in the US for Ovarian. It is $8500 every 3 weeks. It comes off patent in 2026 but too late me. So we will see!
I promised a couple of pics!0 -
I may have gotten carried away with the pics!0
-
@Strongwoman, I too was on Letrozole…but for my breast cancer. Unfortunately it did not work for me.
Dealing with 2 early stage, but both high grade, cancers was extremely hard and confusing. I had a right side mastectomy, a total hysterectomy and then 6 rounds of chemo for the ovarian cancer, which was thought would also confer some benefit to the breast cancer as well. Other than a yearly bone density scan and being put on Letrozole for the breast cancer, there was no further follow up from medical oncology. I saw my Gyne onc regularly - every 3 months or so for a year and a half. I never really felt well - mostly really bad back pain and fatigue.
And that ol’ hernia on my my right side was still persistent, so a general surgeon agreed to operate on it, provided I have a clean CT scan. So, I asked for that and to everyone’s surprise, it showed multiple metastasis - bone Mets all over my spine, rib cage, femur and Mets in the liver as well. Well, that was it - now stage 4 cancer…but which one? Everyone’s bet was on ovarian cancer, but after doing a liver biopsy, it showed metastatic breast cancer. This was last year, 2022 - a month before my daughter’s wedding.
2 -
2 -
I was put on an oral targeted therapy called Kisqali, or Ribociclib. It worked for me for about a year. I was happy with it - the main side effects I felt were fatigue, loss of appetite - and strange changes to the hair! It mostly kept my condition stable for about a year, then my scans started showing some progression in the liver. So, I have now changed to an oral chemotherapy- called Xeloda, Capcetabine. I’m only on my 3rd cycle, other than a few rough times, it has been manageable. First scans since this treatment are coming up next week. Wish me luck!! 🤗
1 -
@Tinazzie Thank you. It was a good break. As it turned out it was right after the bad news about the Gemcitabine so good timing. I too was on Letrozole for breast cancer. Discovered a couple of years ago. Stage 1. They put me on it when I was on the immunotherapy trial and They took me off it when I went back on chemo last year because Taxol was taking care of it too. Have a mammogram next week and won’t be surprised if it has progressed. No idea what’s next with that.0
-
Aplogies Ladies. My girlfriend came with her 4 month old so I had some baby time.0
-
@Belouche1 I believe it was either through the company or the hospital in London, Ont. Would I go back on it. No, because I had a toxicity reaction to it. Trametinib is a MEK inhibitor so I am unable to go anything that is a MEK inhibitor which seems to be where the research is targeted for LGSC currently.
Would I recommend it? I don't know. The research is there to support it but the side effects and experiences of side effects has 80% of the population who has tried it, discontinue it. This is due to the quality of life aspect related to the drug itself. For me, the answer would be no and I would not have gone it if it was not covered.
We are unsure if the Letrozole is working or not working. For now, I remain on it due to low side effects that hardly affect me now.
I have also started taking Turkey Tail Mushrooms in tea form which is reported to decrease the cancer producing cells. I will not say yes or no for sure. My last CA 125 level was down from the previous one. Will see what the next one is. The way I look at it is, I have nothing to lose and everything to gain.
I hope this helps. If you want to private message me, that is okay too. If you have any more questions and want to ask, I am here anytime.
I will have my fingers crossed that you will find a resolution soon that will help you.0 -
@Taita Wonderful pics and it looks like you had a great time! I am sorry it hear about your latest news. I, too, have a mammogram next week. I will keep my fingers crossed that the scan is better than you expect it to be. I have heard that the ascites is uncomfortable and that clothing is difficult to wear. I know that after my surgery and even last year, I disliked anything around my waist and mainly wore loose fitting clothing. Bras were another issue for me and would press on my abdomen.
How long does it take for the fluid to accumulate for you now?
Glad to hear the new drug has minimal side effects for you and is manageable as well.
How are you doing overall?
Portugal is also on MY bucket list of places I would like to go to. Thank you for sharing your pictures!1 -
@Taita My apologies, I got mixed up for a minute. You are not on a new drug but are inquiring about one that is only available in the USA currently. I do hope that PMH has some answers and solutions for you. I know you will keep pushing for answers. Keep on doing the things you want to do when you are feeling well enough too.1
-
@Tinazzie I am thankful the new drug is working and with minimal side effects for you. How are you managing otherwise? How do you fill your day up?0
-
I missed the chat again this week.
I am doing ok. Just having another CT scan on Monday and to talk to onc. Then chemo Thursday.
Just say the ENT speacialist and see him again in 3 weeks for an ultra sound and biopsy apt. No one wants to say much to me. I am still in limbo. But, I feel fine. Some mornings my legs don,t want to carry me but its tirering. I still keep moving forward.
I hope you all have a great day!0 -
@Strongwoman, and everyone. I am so proud of myself! After yesterday’s convo I decided to listen to my body and cancel my stent replacement surgery on Monday. I am still very depleted from the chemo I had last Wednesday, although today I think most of the doxyrubin has left my body and I am taking fewer painkillers. I had a lovely talk with a pre- admissions nurse, who was really empathic and supportive of my making a decision that felt right to me. So I called the urologists office, and his nurse gave me pushback because it is the second time it had been re-scheduled and they are very short of operating room times. I explained the situation to her and she said the only date she had available was Dec 18th, which is the surmised date of my last chemo. But chemo can be put off for a week, so I agreed to that. Then she called back later and she had been juggling with possible dates on my behalf and come up with Dec 4th if she can get someone to move to the 18th. She didn’t have to do this. It is not yet definite, but it shows what can happen when you stick up for yourself, doesn’t it?So today I am dealing with constipation from all the extra opioids I took over the last two days, but my stress level has gone right down, knowing I don’t have to go through the hell of day surgery in three days. What a relief! Now I can concentrate on building up my strength again for the next merry-go- round.
May you all be well and at ease, with joy, love and kindness all around you.1 -
@Hooodith I am so proud of you! Good going! You are on the right track.
Next is the opioid situation which you will deal with next.
Constipation......Restoralax even twice a day, lots of fluids, a tsp of corn syrup
See what happens. It is awful .... Constipation that is!
2 -
@babs272 Hello! No worries as here you are now.
If you mind sharing, what is up with the ENT? Something related to the cancer or separate issue?
Sorry to hear about the legs. Hard when your mind wants to do something and your physical body doesn't want to cooperate. So frustrating. Sounds like you are taking it in stride.
When you are ready, let us know how your appt goes next week
Thank you for the update and for sharing0 -
Good afternoon everyone. Just catching up on all today’s chats! Lovely to “meet” some I hadn’t met before. I got a call this morning telling me I needed to go for more bloodwork asap as it would be a baseline before I start my chemo tomorrow so I rush to the lab and they don’t have a requisition. After calling the cancer clinic it turns out it got faxed to the wrong number (non-urgent). Anyway I got it done and tomorrow I shall finally get started.1
-
@JoanEG Thankful that was sorted out for you. How are you feeling about starting chemo tomorrow?1
-
@jmbarrhaven Thank you for letting us know.
@mjmck21 I feel so lucky to have known you. You were an inspiration to me with your positivity and live life to the fullest quest. It is so fortunate that you were able to get your trip to the UK/Ireland and I hope those memories help carry you through this difficult time. The few times I met you on some zoom support groups, your words were always kind, understanding and supportive. It is with a heavy heart that I say goodbye…I will miss you. Wishing you a peaceful journey.
1 -
@Strongwoman I’m actually anxious to get started. Maybe a little nervous but more about the logistics of getting there on time during rush hour and hoping that I am feeling good for the 1 1/2 hour trip car trip.0
