English Community

Good morning everyone! 

Looking forward to having you join the Teal Thursday chats for April by posting below. If you have any questions please let me know. 

All the best!

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Hi

I have a question:  has anyone seen the movie with Andrew Garfield and Florence Pugh called We Live in Time?
She has Stage 3 Ovarian Cancer in this movie - it flips back and forth a lot, but they show her once having chemo but don't show her taking any medications.  They shave her head and save the hair in a box.  

I hated the part where they show her vomiting - not everyone has that experience - in fact, that's why medications like Zofran and Metoclopramide are given....to prevent nausea and vomiting!
It made me wonder who did the research for that movie and was it only based on what the process is in the UK?  Why do the movie folks always seem to show cancer patients vomiting?  

@DiamondGoddessYYC I have not seen it. My son did and told me not to watch it. Sounds like his advice was sound. "Hollywood" depictions are not likely a good representation…they need added drama for audience impact. I never threw up through my entire chemo treatment thanks to the anti nausea meds. I'm betting their research was very loose. Disappointing that's for sure. 

Same for me - I feel nauseated a lot, but have never been sick.

I take Zofran after chemo and if I need to I take Metoclopramide as well.  Even though the protocol post-chemo is meds for 2 days, I called the Oncology Pharmacy team and said I needed longer lasting anti-nausea as I need it for 6-7 days after and this was accommodated easily.

I may write to Benedict Cumberbatch as I think he was the Director....I think we need to speak up about accuracy and depictions in media.

Dear DiamondGoddessyyc, that was truly my experience with most rounds of chemo the pre-treatment and after (zofran or metoclorpramide) was very helpful. However during my last cycle of gem/bev the meds weren't recommended making me nauseated for days and was then told to take meds as needed. During a follow-up CTscan I also became allergic to the contrast dye resulting in extreme vomiting and dizziness and now take premeds. My treatment has been paused since December due to growing side effects or perhaps mucocitis and I experience dizziness and vomiting about once a month without reason!

I think vomiting may be the only way for the movie directors to express the degree of illness but very misleading  information for the average viewer.

Thank you for sharing!

Lauren 🙏🩵

Hi Lauren @florence2022

ugh...that sucks so bad!!!  so do you still take either zofran or metoclopramide to help try to prevent your monthly side effect?  

I hope you can try something new - I heard about Zelenirstat on the news a couple months ago and I asked about that as it's been developed at U of A but was told I didn't qualify as it's only in clinical trial stages - not ready for general use yet.  It sounds SO hopeful!!  It's a pill and no side effects!!  I hope they can somehow fast-track it.  ALL Teal Sisters I'm sure would love nothing more than a pill treatment with NO side effects!!

Never mind.... I found it - it's through Wellspring, so I'm waitlisted now.

I thought I saw a Support Group: Ovarian Cancer 6 week program April 29 to June 3 - but now I can't seem to find it.  I thought it would be under events, but it's not there.... where else would I find it to register?

Wellspring website?? I know they often offer programs. 

Yes, you're right.  I found it there and am waitlisted now. :)

Hello all...I'm hoping this note will appear at the end of the previous posts. Guess I'll see when I post this.

It's a sunny and very warm day here in Florida. My countdown to return north is on. I'm so looking forward to getting back home however my Dad still has another surgery looming so I'm spending my time ensuring that we have everything in place to support him when I'm away. He was in the ER this past Friday-Monday due to some post surgery complications so it made for a fun weekend (insert sarcasm). We saw his Thoracic surgeon yesterday and the margins around his tumour and his lymph nodes were all clear. That was great news! I can only hope it means the cancer was contained. He still has ongoing bladder issues with a 4cm stone which is the next surgery he'll need. One step at a time right!

On an personal note by chest, ab and pelvis CT's came back clear. There was one strange item that popped up on the report which I reviewed quickly with a doctor friend of mine. He said it was minor and not cancer related so not to fret over it. He said the next CT likely won't even speak to it. I did speak to my oncologist team and forwarded them the report. They said if they were concerned they would call me. They also asked me to bring the CT - CD with me so their radiologists can review it. I will see them on May 9th at PMH for my Parb Clinic bloodwork/check-in.

My son, future daughter-in-law and granddaughter are headed here (Florida) tomorrow for a very short Easter weekend visit. My parents (great grandparents) are very much looking forward to seeing them (as much as me). It looks like it's going to be a hot one here so the Easter Egg hunt will be indoors (no-one wants to eat melted chocolate).

What's going on in your worlds? I know there are folks who had recent tests and are waiting on results. Some have been in treatment. Some are just dealing with the after effects of the physical and mental toll that OV Cancer can take on us. I hope wherever you are that you are able to take a moment for yourself this weekend. Be well everyone and stay strong.

I don't ever seem to be able to log on for Teal Thursday because Thursday seems to be the day when all the things happen!  So wanted to share an update.

After 3 rounds of chemo, surgery, and 6 more rounds of chemo I am officially done.  My latest CT scan still shows a couple of what they are calling peritoneal carcinomas, but they haven't changed in months. Everything else in my body is either normal or unremarkable.  My team is happy with these results – I am a little nervous.  My surgeon is also slightly perplexed by the results as she is super confident they got everything during surgery.  I trust her implicitly so am going with it.

To celebrate the end I got a henna crown on my bald ass head.  It was my daughter's idea and it was an absolutely wonderful experience.  I felt like a princess.  It was very empowering and I had a good little cry after it.  I think I managed to share a picture

I'll be starting Zedjula this coming week if my blood work is good.  A positive HRD score is 42 and my score was 40 so my team said "that's close enough".  I've seen some mixed reviews about the side effects so I guess we'll see.  I'm starting at 200 mg per day and we'll adjust from there if required.  It's been 5 weeks since my last chemo treatment and I'm feeling really quite good so I'm dreading it a bit.

Overall I'm very relieved, but also very nervous and scared to be done treatment.  I've been told by more than one mental health professional that this is normal.  I'm itching to get back to work, but they want me to be stable on the Zedjula first, so I'm not cleared to go back until June.  In the meantime I'll need to find more things to do that isn't sitting around thinking about stuff.  I've signed up for a bunch of Wellspring classes and my golf season starts the last week in April so that is super exciting!

Hope everyone has a wonderful Easter weekend. 

Jenn.

Jenn,

   Your henna crown is very beautiful. What an empowering way to honour your journey. 

@BennieTBear the henna is beautiful!! Congratulations also on getting through the last phase. 👏

I hope the Zedjula transition goes well!!! Keep us posted  

@BennieTBear,

I have never seen this kind of henna work. Its lovely! 

I hope you tolerate zejula well and you get a long progression free interval.

I started 200 mg in Dec but had to suspend it for a week at the end of the first cycle due to low neutrophils. I was told this is a very common occurrence. I resumed after a week off but at the lower dose of 100 mg. I'm at cycle 5 now and finally had normal blood results for the first time. The side effects have otherwise been minimal, elevated BP, some sleep disruption, achy joints and occasionally mild flu like symptoms. I feel really well the majority of the time.

My 6 month scan is next week and I hope to see the residual nodules in the ommentum have shrunk or disappeared.

Stay well,

Claire

@mcb sending positive thoughts for your upcoming scan!

@BennieTBear  Thank you for sharing pics of your henna. It is beautiful and am glad it provided you with some therapeutic aspects to in your journey.  Yes, it must be scary in a way to be finished and on to a new phase. When will you start the Zedjula?  The Wellspring classes are great and glad you found some you can enjoy as you wait to return to work or be given the ok to return to work.  It is a good sign when we are looking forward to returning to more of our "normal" lives as well.  It must be enlightening to be finished treatment for now and a relief as well.  Good for you. Our journeys can bring so much to us that when we do finish it feels good. Glad you were able to log on and give us an update. It is nice to hear how everyone is doing on their journeys.  Let us know how you are doing in the coming days and hoping you had an enjoyable Easter weekend as well.  Take care of you!

How have you been doing these past few days? Getting back into the groove of things on a day to day basis and finding things to do? It can be difficult to transition back but we do and find our ways to normalize our days again. 

CONGRATS!  @BennieTBear The henna is a fantastic idea!  Looks amazing :) 

Quick update. My 6 month scan is clear. There are nodules in my omentum that they previously considered disease but no progression. This time they say since they haven't changed since diagnosis they can be considered normal lymph nodes. Yay! 
Hopefully that happens in your case too. 

Hi mcb, I am very happy for you it is always wonderful to hear good news!

Excellent news@mcb!! 🩵🩵🩵🩵🩵

Such great news Mcb
So good to hear.
My next CT scan is May21st.
And I am always on pins and needles waiting for results.
Positive Energy and Vibes always 🙏🩵
Sent from my iPad

Hi all. Just checking in. I have been busy painting the house and waiting, with trepidation, for my recent CT results (after 3-month chemo holiday).

My results…progression…as expected…but no new lesions!! 

Report indicates:

• nodule "in" kidney - stable and likely benign - not mentioned in the final summary
• trace amount of ascites
• progression - most tumours increased - one tumour decreased

I'm ok with this. I was afraid the cancer would just blow up and spread while I was not on treatment (worst case). I think the tumour increases are enough to warrant another round of treatment (more than 20%).

Not freaking out. Just taking the punches as they come 🥊.

I will be doing my research on available trials to prep for my appointment. The other option would be to go to one of my last two standard of care options. Either way, heading to treatment #9!! 

I'll have to wait till Tuesday to get the Dr's take on it and see where we go from here.

I really appreciate being able to unload here…now I can get on with my weekend! 🤣 Thank you all for listening. 🥰🤗

@GloHo…no new lesions is good! They can focus on the known. Let us know how the Dr. appointment goes. 

I'm curious. Where do you go to research trials? You are so knowledgeable in this space. 

Hi. Thanks. I will keep you posted.

clinicaltrials.gov is my main search database. I also check PMH and Sunnybrook clinical trials sites just in case something isn't posted to the first site (I don't think I've ever found something not posted but I don't want to leave any stone unturned)!🤣

If anyone needs assistance navigating the clinical trial database, I would be happy to provide guidance or answer questions. 

Happy Easter everyone 🐣

@Alwayslearning

No new lesions was definitely good news! As you know, my mind was wandering from best to worst case scenarios…but that is a process I normally go through when changes  come along.

There is a trial for me and I will put something together to post in the clinical trials conversation on this site. 

I go to clinicaltrials.gov to research available trials. 

Of course your mind will do that! 
So glad there's a trial. 
Thanks again for the info on your source. 

@GloHo  Thank you for your update. It sounds relatively positive. Were you able to get to your doctor appt and have your discussion re: treatment and where you go from here? If so, what were your end results?  I am thankful that you feel confident enough to "unload" here. It is what the platform is for. To share and to unload the negative stuff that we don't feel we can discuss with others in our circle. I am also thankful to hear that you still have options to go to as of yet. That is promising that there is still treatment available to you at this time. That is promising. Good to see/hear that you have no new lesions either. You must be happy with that. 

Hope you had a nice Easter weekend. If you can update us on your journey sometime, that would be wonderful. In the meantime, take care of you!

@Strongwoman

Hi. Yes…made it to my appointment and there is a trial for me!! YAY! I am currently in the screening process…starting with four appointments on Tuesday! Waiting for appointments for heart and biopsy. Of course, I still need official approval from the sponsor but am feeling confident that it will be a go. I am just getting my head wrapped around getting back to treatment and travel after my chemo holiday and the commitments I have to make for the trial. Once I get it all straight in my head, I'll do a post in clinical trials with details 🤣.

Our Easter was good. Had my son and girlfriend on Good Friday for dinner. My son was in a hockey tournament over the weekend and that was the only time that worked well. We also went to see one of his games…so nice to see him playing hockey again…it was such a big part of our lives when he was young. 

@GloHo  That is wonderful news! I am happy for you. You will adjust your schedule and get back into it in no time. Look forward to your post in clinical trials to see what they have in store for you next. It must have been nice and felt normal to watch him play again. Glad you had a nice Easter too. Sounds like your journey is going as planned which is good.  Keep us posted along the way. Again, congrats on the good news.

@GloHo I'm glad there's a trial. You amaze me with your energy. I look forward to learning about your next journey and will watch for your post. 

Hi all...I know it's Wednesday however I'll be travelling all day tomorrow as we begin our journey north to Canada. I'll likely be incommunicado for a few days so wanted to post and just check to see how everyone is doing. I don't expect folks to post anything until tomorrow (Thursday). I just wanted folks to know I'll thinking about y'all (I'll be stopping in Georgia for a few days so couldn't resist). 

Things are better good with me. I'm hoping my May 9th check in at the Parb Clinic at PMH (Toronto) will be a non-event. Bloodwork, CA-125 checks. You guys know the drill. I'm also hoping they'll move me to check in's every 2-3 months on a regular basis. We shall see. I'm also going to meet a new doctor at the Sexual Health Clinic at PMH. Her name is Dr. Taylor Roebotham. It takes a year to get in to see her existing counterpart so I'm excited to have this opportunity with Dr. Roebotham joining their team. I've had a few challenges post surgery, chemo etc. relative to my body so hoping they can help me out. I'm turning 60 this year so there's lot of life still left in this gal (tee hee). I know it's probably a topic that we don't tend to talk about but heck, we talk about everything else so why not this right?!

I hope there is sunshine in each of your day. Looking forward to hearing from folks tomorrow.

@Alwayslearning

Thanks for bringing this up. I had a friend ask about this topic on Monday and I couldn't give her any direction. She is also a patient at PMH and said she was going to speak to her team about getting connected with someone there. I had no idea the wait would be so long!! Good to know. If you don't mind, please keep us posted. I think any information on this topic would be helpful.

Enjoy Georgia and safe travels home.

Sending positive vibes for your test results. 🤞🤗

Thanks @GloHo. It took me a few months to get in to the Sexual Health Clinic at PMH to see a nurse practitioner. It's a much longer wait to see the doctor who specializes in this area (sexual health/oncology). They also only host the clinic on a limited basis at PMH and I think that also contributes to the long wait times. I was referred by the social worker/therapist I have through PMH. Your friend's doctors can definitely make the referral. Good to luck to her!

Hello,

   I haven't joined in on the Teal Thursday chats yet as I am quite new. Can you please explain the process to me? Is it like Zoom? I live on the west coast for I assume it will be 3 hours earlier for me? 

Thanks, 

LeslieA 

Hi @LeslieA...it is not a Zoom. It's an online chat. Folks typically hop on at 1pm EST so yes, it would be 10am your time. You can come back here to this thread OR you can access it quickly from the OVDialogue Home Page. There's a big teal box on the bottom right corner called TEAL THURSDAY CONNECTION with a link at the bottom that would also bring you back to this thread. Hope you can join in and hope you are doing well.

@LeslieA  I  hope that @Alwayslearning explained it well enough for you. Have you been able to join a Teal Thursday chat yet? If not, get caught up later when it is done. Yesterday, no one was on so I just monitored it from my phone. Busy days for everyone. Hope you are doing well and continue to do well. Take care of you!