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Eileen

Ty for the encouragement. @Fearless - Vol Mod. Thats what i am aming for to reget these tumors shrunk. And to stabilize them. I was on a high dosage of the carboplatin originally. And it was working great. But having delays in treatment dont help. Yes i am going to be speaking with my oncologist to talk about having another type of chemo with the avastan.

Fearless

Ladies, I'm going to have to sign off.  The new pups have a vet appointment for their last set of shots this afternoon.  To all take care, stay well, and hope you'll join us again next week.

To ToughAsTeal and all of our community with friends and family touched by the war, 

Slava Ukraini

Eileen

Have a good week everyone. 

ToughAsTeal

I know it's not Thursday😀 i have an unofficial answer about CT scans + Ready-cat drink. From my cousin nurse diagnostic imaging in Surrey BC. I was a bit dopey/sleepy so I hope i got it right.
ready cat is a barium drink. If there is a possibility the patient  has bowel perforation, and i think she also said fistula, it is very dangerous for the barium to leak/get inside the body cavity. Also, the barium can cause very white bright imaging in the film, making it more difficult to see everything on scan.  The barium is still used in other situations.  

Will miss this coming Thursday likely as I will be at treatment.
Hope everyone had a good week...and if not good, then manageable at least. 🙂
keep moving forward

Bojenka

Hi All,  

I have been unable to participate on Thursdays so far but I read all the comments afterwards.  I find it a great support 

Thank you and to Ovarian Cancer Canada. 

Eileen

Thankyou @ToughAsTeal. For the clarification. To update my ct results even though its not thurs yet. I am currently at the hospital with right flank pain possible kidney stone the dr here are running some tests. The dr here at the hospital gave me a copy of my contrast ct results. Zejula is 100 percent not working. I now have multiple omental/peritoneal deposits (as they call it) along the left flank and centrally within the abdomen those ones are measuring up to 12mm in size. OMG. I am now terrified. I see my oncologist in 4 days
 

ToughAsTeal

@Eileen hi Eileen I am sorry to hear this unexpected trip to hosp. I hope the pain is being managed. One test, one scan, one result at a time. Journal(even if it means using your mic to dictate an email to yourself) so that you have something with all your questions for your appointment….this worked for me when I couldn’t write or use iPad keyboard.  The fear you have is understandable and pretty much all of us here understand those feelings. You are not alone when you are here😀Will look for an update when you can. 

Keep moving forward

Eileen

Thankyou for the kind words of incouragement @ToughAsTeal. i cried almost all the way home still am. Yes i keep a journal  and have been doing that for awhile now for awhile now. I am allergic to most drugs. Codiene. Morphine. Tramadol. Hydromorphine. She tried a small needle dose of tarodol. Not sure how to spell that. Just small dose and 45 later my heart is pounding like crazy. So she says oh its cancer related probably from your nodules around your abdomen. Like i believe that. Not. I touch the side of my rib and i hurt so bad. But my liver shows normal. Other than a little kidney stone in the upper kidney on right side. My liver enzymes are still a bit high but thats most likely due to the Zejula. Sorry guys i know this is the chat thurs posting. Its just that since my last contrast ct from dec 15 the nodules have gone from some to multiple and now more. Seems like its growing faster. I am back to were i started from when i  was first diagnostic. My daughter said that at least we are grateful that it hasnt spread to other organs. Right now it doesnt feel... Sorry just too much crying. Gonna close off now.

Fearless

@Eileen I can feel your fears and confusion.  I wish I had answers for you but I don't.  All I can do is offer my own experience in hopes that might help you feel less alone.  I sounds like your cancer is much like mine.  Not distinct tumors but striations of cancer cells that as they begin to to progress become nodules.  I didn't find that out until I recurred.  I also didn't find out that CT scans don't always show everything.  It wasn't until a failed surgical attempt to fix a hernia I have that I discovered that on top of two striations of cells, one on my right side and the other just below my left breast I am riddled with adhesions through out my abdomen and at the ends of many of them are cancer cells. Neither the adhesions or those bits of cancer have ever shown up on any CT's, MRI's or ultrasounds, yet the wall of them that I have precluded my surgeon being able to get into my abdomen and fix the hernia. That said, we also can't track what's happening with that additional cancer so we now work on the basis that when I'm in chemo we continue to monitor length and width of the striations and size of any active nodules of which there is but one in each striation.  And we assume that if chemo is working to shrink those or even just maintain them we assume the same applies for what we can't see.  Pretty obtuse isn't it but it's the best I have to work with.  But like your daughter said about you, what I do know is that none of the cancer I have has infiltrated any of my organs.  It's all in the same place in the abdominal cavity and just shrinks somewhat when I'm treated for recurrence and in between stays stable. And it's been six years now.

All I have is trust and faith in my doctors, and the other support I receive from my cancer centre.  I truly believe this disease has two components to it...the physiological which we treat wih surgery and drugs and sometimes radiation and the other being the psychological or how we cope.   On the latter the better supported we are and the better balanced our perspectives are the better we cope.  The best thing I did for myself was reach out to my cancer centre's social work department and engage one of their gals.  I've had her in my corner for four years now and I can't say enough about how she helps me with perspective and balance.  This might be something worth investigating for you. Your cancer care team can make the referral.  

All of that said.....cry.  And cry whenever you feel the need. And get angry, and get sad.  But also look for the small wins. A new treatment that you didn't know was there for you, a minor drop in your CA125, just a day where you're pain free.....and celebrate them.  And use our community here to be a shoulder you can cry on, or just lean on when you need that..but who will also be your cheerleaders when you need that too.

Please do keep us posted.  Not just on Thursdays.  We are here for you any time for any thing.

  

Fearless

THURSDAY MAY 10 AND 1pm ET.....come one, come all to todays live online chat.

One of our regular participants, @ToughAsTeal, won't join today. She's in chemo so we wish her well. She's had a rough couple of weeks so hope this goes a long way to getting her more comfortable and hopeful again.  She certainly hasn't lost her sense of humour though and gave me permission to share her comment in a note to me last night. " I am reduced to celebrating when I have a B.M.  Is this truly the answer to a simple, happy life?!  Lol.  You can share my life philosophy to the Teal Sisters tomorrow if someone needs a lift.... or a dump.   Sorry, I couldn't resist." 

I'm composing this early today as I'm finding the current treatment regimen is having significant effect on my ability to process and communicate information with any speed or coherency. So what would take me 30 min to compose will probably take at least an hour.  But there was something I wanted to share or at least put out there...more so for those who may read this and be caregivers or clinical support.  Specifically the importance of how you 'show up' to the patient.  My experience over the past six years of treatment has really been one of encouragement from those around me. Reminders of treatment options out there when I mentioned concerns about efficacy of current regimens, reminders of the proliferation of research and clinical trials that surface almost daily, examples of those who have mastered longevity when cure is no longer an option. Just a  well placed laugh or smile can be enough.  But yesterday, as I sat there beginning the 5th cycle my regimen of Caelyx and Avastin, knowing it's only effective 30% of the time,  and knowing that when the time comes there are limited options for me  I was chatting with a fellow survivor when one of our more senior cancer care staff came by and joined the conversation.  Well gals it sure didn't help my mood when I  I made a joke about my husbands major efforts to train the new pups and in my black humour said I'd probably be six feet under before the commands sit and stay and down were imbedded in their psyche's. She could have laughed along or made some equally humours comment. Instead I heard, 'oh, I guess it may not have been the best choice to get puppies at this stage".  I shrugged that one off.  Then came my comment about being a bit disappointed about my CA only dropping 60 points this time when I'm used to it dropping in the hundreds.  My "cheerleader's" observation....not an encouraging reminder that it's dropping and that's all that counts or my scan a month ago actually showed some reduction in size, but a  comment that this regimen can lose it's efficacy quickly. And then to my response that I was sure my oncologist had something in her bag of tricks, she added...well, options are pretty limited at this stage. A kindly reminder that new drugs, new treatments ,  and trials are happening all the time and we're sure not there yet would have been helpful.  But gals, I controlled myself and didn't jump out of my chemo chair and punch her in the nose.  I don't ascribe to giving false hope, but I sure do ascribe to my clinical and caregiver support demonstrating some decent, respectful and hopeful bedside manner. If there's one thing that's kept me going these six years of treatment beyond a very capable oncologist, is my ability to see through the dark and embrace what possibilities might lay ahead. I remind myself that when I encountered my first recurrence four years ago we were all expecting the solution to be a repeat of my chemo.  Instead, three days before I came in for my treatment plan my cancer centre was asked to recruit candidates meeting their criteria for a very promising trial and as they scrambled through patient profiles there I appeared. So day of treatment plan I had two options to consider...and the one I chose led to a two year unexpected positive response.  So there is always hope, no matter how vague or impossible that might seem at any given moment.  Perhaps, for some of our caregivers, clinical or otherwise, Beside Manner 101 didn't cover that.  Sorry for the rant today gals.  But needed to get that one off my chest.

Won't take up any more of your time. You all know what's coming up in events this month and if you need a reminder go to the OCC website and you'll find them under Events/Local Events.

And they've begun to communicate this years' Walk of Hope...Sunday, September 11 is the date and although I'm remiss for not actually reading the most current communication on the the topic I am assuming this may be the first live Walk in two, or is it three, years. Great chance to spread awareness. Great chance to honor the courage of our Teal Sisters, with us or otherwise.  Great chance to help raise donations to keep the great work OCC does for us alive.  Great chance to meet Teal Sisters in your community.

 So it's just before 1PM and ready to start whenever you are. WHO'S' WITH US TODAY? SAY HELLO.  TELL US WHAT'S ON YOUR MIND TODAY?

 

 

chris03

My name is Chris. New to this forum 

Fearless

@chris03 Welcome to our live chat, and I assume the OVdialogue community. I'm the National Moderator for the chatroom and host of the weekly live chat as well as being a survivor of 6 years myself.  And right now back in treatment myself, AGAIN (sigh).  

If you're comfortable please share a bit about yourself and what you hope to get from our community.  No rush, no pressure, just what you're comfortable with or feel free to just follow along.  There's no requirement that you participate.

Hope we can be of encouragement, help educate and just be here for you for whenever you need us.

Eileen

Good morning @Fearless - Vol Mod. Wow sorry that u had to endure that nurse. Nurses in their line of feild should be respectful and always have encouragements. It not her job to tell you outcomes but encouragements. Maybe memtion it to your oncologist next tume. As for me waiting for my meeting this morning with my oncologist in a he and half
 Still pain in my right flank giving me issues. Went to the urgent care center here and waited 3 hrs. Spoke to a dr and went over things like ct and discussed my cancer treatments issues along the way etc and he did a exam. He mentioned that he can see if my left kidney was inflamed and my uterer mildly blocked that the nodules pressing on my uterer would be the culprit. But being that it' on my right side and no masses or blockages. Mind i he did mention their is a small grey area between your kidney and ureter that isn't quite clear on ct. Good to know on that. He said their are few options. 1 would be to try antibiotics to see if pain goes away. Being that i am allergic to just about all pain killers. We went over that too. He said their is dexamethasone or the suppository anti inflammatory one. As i cannot take ibepfrophen due to severe avid issues that i take pantoprozole daily. He said to speak with my oncologist today to ask what the next step is to find what is causing this issue because their is no doubt in his mind the pain is defentely coming from the inflamation in the kidney no matter how mild ut is. The contrast ct showed i had mild right kidmey inflamatiin and uterer.  Sp he have me i pill on dexamethasone last night to i see my oncologist. Also thankyou @Fearless - Vol Mod for your encouraging words their last week. You really helped me alot get through this week. Yes i have a social worker here at the cancer clinic i put in a call we are meeting up today after my apointment. Well had my ca125 levels checked. Omg it doubled agaib from 196
 Its now 411. 2 points higher than when i fiest started ladt yr before chemo. Back to square 1. I did read that reoccurances seem to come back faster and with a vengeance. Whether that is true or not. Been reafing my by your side still book. Got to the area where it mentions the drugs used with avastan. So i been trying to research each one to see what maybe is better than another. I am telling my oncologist that i want to attach this reoccurance with a vengeous.

chris03

So my story begins with what I thought was IBS symptoms from sept-nov. I got tired of waiting for ct scan through dr and after loosing 30lbs went to emerg. I was told I had a mass. Likely cancerous. 

Underwent another ct scan. Mammogram and biopsy in span of 3 weeks. Started chemo early December for ovarian cancer stage 4 
did three rounds then surgery. Recouping from that currently and likely to begin chemo again at the end of the month. 

I just want to hear others dealings and outcomes and suggestions. Thanks 

Eileen

Good morning @chris03 welcome to the group. Sorry to hear about your diagnosis. I was diagnosed on feb 14 2021. Day of all days eh. With stage 3C high grade carcinoma ovarian cancer. I too had a few rounds of chemo first then surgery them another 3 rounds. Had a few delays. Some mild infections. But as long as my ca125 levels were dropping i was happy. My experience was good making plans to hopefully go back to work. Staying positive. As most ladies here will probably tell you. Having a journal to write in everyday helps. This support group i just joined recently as well has given me the strength. I have gone through the whole dialogue. And read just about all posts. Their is alot of chats on different subjects. I found quite helpful. With my delays and a few issues i am unfortunately looks like i am now platinum resistant and will be starting a new regiment. But these woman on here have given me so much encouragement. I am so glad to have joined this group.

Fearless

@eileen, what a time you're having. But the good news is they've identified an inflammation as the culprit of that pain. Now to figure out what's causing it and how to treat it.  One step at a time but it sounds like emerg and your oncologist will figure that out.
Good for you for offering suggestions and challenging the answers you get until you get something that makes sense to you. I often find at the end my doctors and I are saying the same thing, just speaking different languages.  But it is a time where we, as patients who's lives are at stake, must learn to advocate for ourselves. For me it's part of why I'm still here in my 6th year when I was originally told I had 3 in my cards. Ha ha, fooled them !  And still going strong, although I do get tired of hearing...well, back to chemo again hon.  Those little breaks in between are just heaven.

As for recurrences coming back fast and aggressive, that's a statistical average and not necessarily your norm. It wasn't for me. I was NED a year and half before we even suspected recurrence and when we did (in September 2018) we did a couple of CA's and scans over three months to confirm recurrence and assess how fast it was progressing, which was very very slow.  So for me, the recurrence were still in the millimeter size when I began treatment the first time.  What I learned, having made some of the assumptions I hear others make is not to get too far ahead of myself. Just let the "plan" play out.  The only important thing is that your doctor has a plan. 

Also don't panic on your CA scores. They are notoriously unreliable and don't always reflect tumor growth. They can also react to abdominal inflammation to part of your score could well be this inflammation you're dealing with and nothing to do with your actual cancer. Hence. let the plan play out. The scans are really better indicators of what's going on.  Heck, you should have seen my face back in the fall when I came off a wonderful 6 month hiatus from treatment and my CA was 7500.  Cripes it was barely 900 when I was first diagnosed in 2017 and had a tumor the size of a huge grapefruit then.  But I have learned not to panic and the "plan" is playing out just as we'd hoped right now.  CA now just over 1300 and continuing to drop after 4 cycles. Best part is I feel just fine.

Glad you're finding By Your Side helpful. It's a great educator and reference, understanding everything there is generic and you have to be flexible to your individual situation and needs.  And so glad you've also made contact with a social worker. I hope you find her as helpful as I've found mine.

Keep us posted gal. I hope they get that pain under control fast.  

Eileen

But i did extremely well on my chemo. Just the last 2 regiments they had to do delays and lower dose. Which of course didnt help matter in my case
 With that said, everyone does respond differently. So what might work for 1 person might not work for another. So i am not giving up hope at all i am determined to give it everything i got. Oh well my hair was just starting to grow back. I look so much different now than from 1and half yrs from my original picture you see with me with long hair. Oh well not concerned about my hair it never did really bother me maybe we bit in beginning but i loved the idea no more shsmpoo to buy no more razor etc lolol. Updated pic taken 2 days ago. 

Eileen

Yes i relooked at my original ct from when i started. Its close my biggest one in the perirectum was 2.5 cm by 3.2 or something like that. The biggest one they were considered about was on my ovary i think that was like 25 cm. My oncologist nurse said over the phone last week, that they believed pain from nodules on my left abdominal was causing pain in my right back side. I knew it wasn't. The best person is you, who knows your own body. Yes i am actually been doing fine. Not really noticing the cancer just this right pain in my right flank is all.

Eileen

Well ladies i got to go get ready and go to my oncologist meeting and couciller appointment. Wish me luck will keep everyone apprised. @ToughAsTeal hopeyou are doing better and i hear you. Lol.

Fearless

@chris03 I can tell you your story is the norm for so many of us. This disease just creeps up and by the time someone thinks that OVC could be a possibility we're in advanced stage. For me it's 3C, but looking back I know I harboured symptoms for at least 3 years before anyone thought to scan me, and because they suspected lung cancer of all things. Surprise !!!!
And your treatment sounds pretty similar to most....3 cycles of chemo to get rid of what they can quickly, surgery to grab the rest and as a preventative, and then chemo again as the "clean up agent" as I like to call it. Little different for me. I was surgery first and then 6 cycles of chemo, a protocol that's equally common. 
Have they told you your type.  There are four with the most common being High Grade Serous (which is me). Treatments differ by type so helpful to know as we provide some response to your desire for shared stories.

In the meantime a few suggestions if you haven't already accessed these:

• The Ovarian Cancer Canada (OCC) website is a wealth of information on OVC and all fact based. It includes information on current research and trials and new treatments, survivor stories, videos on topics of interest, list of resources and other information to help inform and schedules and information on upcoming events  https://ovariancanada.org
• OCC produces a booklet called By Your Side for those in primary treatment.  You can order it soft or hard copy or both and it's free. A very useful guide that covers most topics.  https://ovariancanada.org/living-with-ovarian-cancer/support-resources
• OCC also runs monthly Speaker Sessions and Teal Teas (zoom platform) along with other events to support us https://ovariancanada.org/Events for those schedules, information and links to register for sessions (all free)
• This site is available to you 24/7 with a membership of over 900 survivors coast to coast. We're here to offer encouragement, share stories, and just be a shoulder to lean whenever you need it.  We've all walked in your shoes at some point so a community who 'gets it' no matter the issue. You're never alone in this community as you go through your journey.  To get started I suggest you click on either the Discussion topics on the home page called New Here, Introduce Yourself and just tell the gals a bit about yourself. Basically what you've shared here, type if you know it, perhaps the Cancer Centre treating you...it's so different province to province and even among centres in any province.  But in the meantime  go to the search box on the top right of this screen and type in key words related to your interests and that should pull up discussions and stories that may be of interest to you.
• Finally come join us here anytime the mood suits.  You'll find we talk about anything and everything and some days have a large lively crowd and other times just one or two.

Wishing you the best of luck in your treatment. So sorry we have to meet this way.  But if I can offer any advice after six years...so many with exactly my diagnosis are now still with us who would not be were it not for the massive number of advances made in treatment just the past few years. Some continue to be NED (no evidence of disease), some like me will always be recurrent but so far we're living well with it. There is hope.  And we are here for you if  you need us.
  

Fearless

Well ladies, time to say good bye for this week. I think @Eileen has signed off already. Gal I love the 'brush cut" LOL but the pup is darling. As you've probably surmises from my past posts I am a dog person.

@chris03 again welcome. Sorry today's gang was small. We have a few regulars who's chemo has been getting in the way of their usual participation but we'll see them again soon. But if everyone else has weather like I have here in SE Ontario (sun, light breeze, even a touch of green in the grass) they're probably outside soaking up as much Vitamin D as possible.  Oh, and if you want to direct a comment to a specific member just input the @ sign before you start typing their screen name and it will pop up. click on it and by doing that they will get a notification of your comment.  Finally, if you have any challenges navigating this site, just let me know. I'm always help to help.  

Until next week, stay strong, stay safe.  

  

Taita

@chris03 Sorry I missed the chat today. Welcome and thanks for joining us. While I am commenting outside the normal blog time I wanted you to know that there is so much hope out there.  My story is similar to yours.  I have had IBS my whole life and I too thought that was it.  I had a big upheaval in my professional life and it was Christmas and I had all the rational going on.  I too finally went to the hospital and by the next morning at 6:30 I knew what it was  That was 27 January 2020.  I had three drains for ascites and had my surgery 18 March 2020 (two years next week) and they treated me as a HGS Stage 3 even though I was technically Stage 4 because of liver involvement.  I had surgery and then six rounds of both IP and IV Carboplatin and Taxol finishing 16 Aug 2020.  I felt amazing and sailed through chemo.  New Years Eve 2020 I had the old familiar feeling back.  Sure enough it was back and a lot. January 2021 I was officially platinum resistant.  Emotional gut wrench!  The stats are horrible but I soon came to realize that I am a statistic of ONE.  Those stats are so out of date.  So I tried for a clinical trial and didn't qualify which was not my happies day and then the doctor put me on Caelyx.  Lasted 5 months and then it wasn't working.  So not to let it go, I asked for consideration for another trial and I got in!  16 Sept 2021 I started a Phase 2 randomized clinical trial, got the new drug combo and it has now been six months. (had to get a kidney stent but that is a minor detail)  I feel amazing.  Side effects are minimal (mostly inflamed joints).  My CT'S show partial response and stable disease.  Happy dance territory.  I will just stay on this until I no longer get benefit or I have some intolerable side effects.  Hopefully a long time from now.  Platinum resistance does reduce your options, but there are other clinical trials waiting for me and I still have standard of care options too.  I consider my disease chronic, I will be in treatment for the rest of my life and I intend to make it as long as possible. There are so many new trials and new options that weren't there even two years ago. I am not saying it will be an easy road, but we just keep plugging along until the next new treatment and whatever else they put on the table.  I am now considered Stage 4 as well (because of the recurrence) and frankly that too is just a number.  This forum and OCC has helped me tremendously on this journey and in turn I hope I have helped other people.  I am very public about my journey because I want to make other women aware.  Not everyone is comfortable with that and privacy is always respected.  Hope this helps and as @Fearless - Vol Mod who we all look to to keep our positive focus on track and provide reassurance when we are facing a new challenge said, reach out anytime.  

Eileen

Lol her name is Miya. Been with me for 12yrs now. Don't know what i would have done without her she been my rock here at home. Same with my orange tabby girl she is like reaching 18 yrs now. Still acts like a kitten. Though she is very vocol meowing at like 3am every morning aggggg hello shut up!!!

Update... i will be starting Avastan with Gemcitabine. My oncologist and i had a nice long talk. Had my books and questions and research. We went over a few of different treatments. She explained that some of the treatments with avastan you can do more of when chemo is finished. If your stable.  Some u cannot. Or some you can switch in between if one don't work. They normally do 6 to 8 cycles my oncologist mentioned but i said oh i thought it mentioned in areas i read u can do up to 22 cycles. She said you can do more on but only on special request by them. All depends on how you do well on it. Weekly. But bring it on. Lets get this shrunk!!!!

 Found out exactly where those extra nodules are in my upper pole left side though near the midline. Behind my left kidney! On the mesentery. My oncologist thought that was where i was having the pain. I said no,  right flank rib and side area. oh she said. So she examined me fully. We went over my results from yesterday dr. And hospital reports etc.  She doesn't think its an  infection. She is going to order a specialized ct that you either drink it they inject something in you where your kidneys and ureter lights up like a xmas tree. We are going to try some muscle relaxing meds that does have some inflamation reduction in it. She will be giving me some extra dexamethasone to help as well for now. So we start from their. Had my meeting with my councillor. She is going to give me a few more links for like knitting club and art club work shops to do online to help me get out of the rut as they say. And i am going to try to maybe weather permitting to go for a little walk even if it a ten min.

Eileen

Hi @Taita..welcome back. Yep same here platinum resistant. i noticed you mentioned that your now stage 4. Even though you thought it was initially stage 4 in the beginning Was it your oncologist that told you as this is a good question to bring up with my oncologist. Curious because in the By your side still book on page 28. Titled stage and grade...it mentions that staging is done at the time of your initial diagnosis and it does not change at the time of your reoccurance even if the stage was stage 2 initially and you have recurred. It is now called recurrent cancer. Its not called stage 3 or 4.   So with those exact words from the book,  it makes me wonder if that has changed now.  Since joining and reading everybody's notes it made me question and ask questions i would never would have thought to ask learning from everybody's experiencing. Its made me better prepared and more knowledgeable.

Eileen

Quick update my oncologist called me this morning. She mentioned that recent studies and research has shown that Caelyx is shown to have a slightly better outcome than the Gem. So after discussing this my oncologist switching. I can always switch if we find things are not working out. I did my own research and it does show this. At least its every 2 to 4 weeks and not weekly. You get a bit more fatigue with this drug. I also requested to have a port installed. Possibly a 2 month wait to have it done due to the covid.

Fearless

THURSDAY MARCH 17 AND ASIDE FROM IT BEING A NOD TO OLD ST. PATRICK, IT'S TIME FOR OUR WEEKLY ONLINE LIVE CHAT.  

Not much of a welcome today. Just had my power restored at the house so no time to prepare my usual updates and reminders.  Of course, if I could ever remember my password for OVd, I could have used my mobile.  Thankfully my laptop has it automatically programmed.  One of these days I'm going to risk getting hacked and just change all my passwords to one.  

Anyway ladies, time to get rolling so welcome to whomever is out there.  Please say hello and let us know how we can help you

mjmck21

Hi Everyone, This is my first time posting on Teal Thursday and I really appreciate all of you wise women on here! 

Diagnosed in November with stage 4 HG Serous with a plural Infusion right lung. Tumor on my right ovary, 'caking' on my liver and possible on intestines also unsure if other organs near the liver are also involved.  Saw the gyno-oncologist Dec 3, started carbo/paxol Dec 6 and have had 4 treatments. After the third the CT scan showed marked improvement. Which was a relief. Caking reduced, tumor halved, plural infusion mostly gone. 

Debulking is to occur on this Tuesday, with an incision from my pubic bone to sternum  so they can do a total hysterectomy, the intestines and explore the liver and area in my upper abdomen as well. I'm not clear if they will do any liver resectioning at that time or if it will be later. The diaphragm may also be involved. I may end up with an intestine resection and stoma but not for sure. There is a lot more involved than the reproductive organs and most of the advice around post-surgery recovery is aimed at hysterectomy patients.
Like many of you I have so many questions. And I have scoured this forum and have read By Your Side. Mostly because it does not seem like there are too many like me. Maybe that is a perception.
Today I am interested in hearing from anyone who has had such along incision or knows something from a patients perspective and what I might expect for the first 2-3 weeks. Its seems like all the recovery information is for simple hysterectomies where the incisions are much shorter which seem like a walk in the park from what I will be experiencing. 
Also any experiences with liver, intestine or diaphragm resections. I may or may not experience these but my guess is there will be at least one involved. And finally I will be having at least three more rounds of chemo and I'm concerned about managing all of this and the side effects from chemo. 

I have many other questions regarding those who are also stage 4 that I will post as I go and will post under topics as well 


Thanks!

Fearless

Well ladies, it's 15 into the hour now and since there doesn't seem to be anyone wanting to engage I am going to go on to other things today.  Usually it's not inconvenient for me to wait for someone to join in, but today has been a challenge here and I need to head into town to run some errands.

If anyone does decide to join in, please feel free to chat among yourselves today. Otherwise, I'll look forward to hosting you all again next week.  Until then, in the inimitable words of my Irish Gran......

May the road rise up to meet you  
May the wind be always at your back.
Good friends are like a four-leaf clover, hard to find and lucky to have,
So raise a glass to those who matter, and be blessed with the family that you have.
Slante to all  Happy St.Patricks Day....

Taita

@Fearless - Vol Mod
Happy Thursday!  It is finally warming up!  I have a weird story with a happy ending .  Went in for my usual blood work on Monday for treatment Tuesday as usual.  Received a call from trial nurse (as usual) to say blood work is good to proceed. There was just one thing .......... the trial I am on that I am having success on has been cancelled.  It was due to be completed October 2022. The reason is that preliminary data showed that the other side of the randomized trial (Taxol and Avastin - standard of care) were getting better results for more of the participants, so they were closing it down.  Shocked was an understatement!  In the next breath she said, but you are getting such good results and shrinkage and you have been on it past 5 cycles so you have two options.  One, leave the trial and go on the Taxol/Avastin or stay on the current new drug regime (with all of the CT's and supports, etc) until June 2023 and then the drug would no longer be available to me.  Well it took be about one second to respond, I will take the latter .  SO glad I was randomized into the new drug arm of the trial! So what could have been a panic turned into great news for me .  So that's my news for this week!

Fearless

Well, before I could sign off the posts from @mjmck21 and @Taita popped up so I'll stay on for a bit and try to answer.