Let's get started! Come and introduce yourself

SadieC

Hi there, I'm Nancy from Richmond BC.  I was diagnosed with Stage 3C Serous Ovarian Cancer in May 2019 though a gallbladder surgery, after months of exploring different "rabbit-holes" and specialists appointments.  My GP explored ovarian cancer right from the start that October and ordered an internal ultrasound, which came back clear.  Within 8 months I was at BC Cancer starting treatment which was 4 chemos , surgery, then 2 chemos.  I took part in a study there called GOTFIRST, which was immunotherapy and Niraparib (Zejula).
Last December 23, I was officially given the "NED/In Remission" status, which was the BEST Christmas present ever!
The following September I found out that I was in the placebo arm of the trial, and the drug company decided to close that group.  
That being said I have stayed in remission so far, with clear CT's and CA 125 scores stable at 9-11.
I started Niraparib on December 2 as  frontline maintenance.
Just found out about this group on an OvCAN podcast this morning and am so thankful for all of you!

KarenBemi

@SadieC That is a great story.  Congrats to you on your status. 

Fearless

@SadieC what an inspiring story.  And much of it thanks to a GP who thought OVC first, not last.  Gosh how we all wish every doctor out there would take that approach!  So glad you found us.  Love to have you join our live chats on Thursdays at 1pmEST if you're interested.  Just sign in, click on the Discussion "Teal Thursdays" and you're in.  So many of us are going through recurrence right now or newly diagnosed.....we love those good news stories!  
In the meantime, stay safe, stay well....and always feel free to reach out if we can be help to you.
  

CountryLiving

nice to meet you @SadieC and such a postitive story. Hope you will join live chats on Thursday. 

prayersformom

@KarenBemi are you still in treatment now? I am so scared and so is my mom. We live in charlottetown. 

shasar

Hello! 
My name is Shannon and I live in Ontario. I was recently diagnosed with HG Ovarian Cancer in September 2020.  I am 41 and have 3 children. All boys ages 7 and 2 yr old twins. I do not know specifics of my stage as I will be having my surgery this Thursday the 17th of December.  This will include a full hysterectomy, removal of omentum and debulking. I have already had 3 chemo treatments. My ca125 at diagnosis was 1749.  After 1st chemo went down to 650 and after 2nd went to 127. Not sure where it is now but hopefully alot lower again. Fingers crossed all goes well! 

Fearless

@shasar  Hello Shannon.  Very happy you found us.  So very sorry for your diagnosis and what lies ahead but you sound in good spirits.  Wonderful news that you CA dropped so significantly following your first rounds of chemo. That is a good sign. 

I am also in Ontario; close to Kingston. Treated at PMH originally and then transferred to KGH once chemo began following my surgery and I've kept that relationship ever since.  I am HG Serous....stage 3C...diagnosed back in early 2017.  And I count myself lucky that if I was to get this disease it is at a point in time where there have never been so many advances in treatment.  Todays' survivors are living longer and better lives as a result of all the new knowledge about our disease and they new approaches to treatment....along with expertly trained and committed oncology staff.  

If you haven't already, go to https://ovariancancer.org.  There is a wealth of information there, added to which you might find the recordings of sessions from a recent Symposium that was held for us by OCC in September very inspiring and enlightening. And, order the booklet "By Your Side". It is an extremely helpful guide through diagnosis and first-line treatment.

IF you scroll down the Discussions you'll find a topic called Young Survivors.  You might to introduce yourself to that forum.  At your age there are all kinds of considerations that the "old gals" like me, don't have to address. That group could be helpful to you.

And when you're up to it, do think about joining our live chats on Thursdays at 1pm EST.  To access the live chat, just sign in at the appointed time and day and click on the Discussion topic "Teal Thursday...." and you're in. 

Best of luck with your surgery on Thursday.  I still remember mine. The same procedures as you're having and I was so well taken care of, for me, much less daunting than I had imagined.  And my recovery much faster than I expected.  So wishing you the same.  In the meantime, keep us posted on your progress and do reach out if there is anything we can do for you...even if only to listen. This group is 600+ strong. All survivors.  You are not alone...
  

RobinD

Your situation sounds very similar to mine...awaiting surgery in early Feb and going for my 2nd treatment on Friday. It helps us all to know there are others — and so many survivors! Best wishes 

KarenBemi

prayersformom said:

@KarenBemi are you still in treatment now? I am so scared and so is my mom. We live in Charlottetown. 

@prayersformom, no my treatments are done (hopefully forever) since the end of April.  

Does Charlottetown have an active Cancer Centre?  or will your Mother have to go to off-island?  I am not sure how familiar you are with the west end...but my mom is about 45 minutes West of Summerside.  Currently, she is here in Toronto visiting me but will be going home after Christmas.  I am sure that my mother would be happy to get into contact when she gets home with both of you.  It is very frightening I know.  And you are doing amazing just by being her to try to help her in any way that you can.

KarenBemi

@shasar Welcome to our community.  We are sorry you find yourself here but glad that you did find us.  Best of Luck on your Surgery.

prayersformom

@KarenBemi we will have to go to Halifax. What kind of cancer did you have and what was your treatment plan? 

KarenBemi

@prayersformom I had Stage 3B OVC - Endometrial with a secondary of Stage 1 Uterine.  My cancer was discovered in surgery.  I was hoping it was just a fibroid tumor like so many women in my family had but...no such luck.  So after my surgery, my treatment consisted of 6 Rounds of Chemo (Paclitaxel/Carboplatin) which is a common OVC treatment.  My rounds were 1 6.5hr treatment day every 3 weeks.  I took this treatment very well, with only minor side-effects.  Not everyone is the same but many that I have spoken with have said similar.

Has your mom been given a treatment plan as of yet?  

zedhoward

Hi everyone, I was recently diagnosed with stage 3  ovarian cancer.  I am 55 years old and I just finished my first chemo treatment and am currently just dealing with muscle aches and pains which I should be grateful for,  as I know that it could be worse. I have 2 more chemo treatments before I am scheduled for debulking surgery and hysterectomy. Any advice, words of wisdom would be greatly appreciated. 

RobinD

I'm just a little bit ahead of you...Stage 3 and just had my second treatment. I'm 59. The second treatment is easier because you know what to expect and can better manage what side effects you may have. Days 1-2 the steroid medications gave me energy and then a little harder days 3-6, after that it was uphill and feeling better. Where are you? I'm at Sunnybrook

zedhoward

Hi Robin, my oncologist is in London, Ontario but my treatments are set up in Chatham. This is so great that I can talk with women who are going through this and understand how we are feeling, exactly. 

KarenBemi

@zedhoward, very sorry to that you had to find our group, but happy you did so you don't have to go through it alone.  I started my chemo after my surgery but did have very minor muscle aches and neuropathy in my feet and fingers (still have it in my feet).  The only advice I can give you is what helped me:
1) Try to keep a positive frame of mind.  It will help you through the times when you cannot.  It is okay to be down...just try not to stay there.
2) Try to keep active as much as possible.  Walk every day (once your are allowed after your surgery)
3) Ask for help if you need it.  Don't be strong all the time.  

Fearless

Welcome @zedhoward I'm sorry about your diagnosis but great that you found us and are now part of our community.  I believe we have several members who are also with the London cancer center but receiving chemo out of the Chatham satellite...either now or not long ago.  I'll try to pull up their screen names and connect you when I have a moment.  

In the meantime, if you haven't already, do spend some time on the OCC website https://ovariancanada.org. It holds a wealth of information on our disease that you will find extremely helpful as you navigate through treatment. And I do recommend you order the booklet By Your Side.  It's a very helpful guide for women newly diagnosed or going through first line treatment.

It sounds like you're tolerating your chemo well.  As @RobinD mentioned, once you have experienced some of the side effects it becomes easier since you're more prepared.  The real key is ensuring your oncologist and especially the chemo nurses are well informed. The better they understand what you're experiencing, the better they can adjust your treatments to ensure they are as comfortable as possible.  My own experience, from four years ago and more currently mirrors yours and RobinD's.  Day of fine, next day full of energy from the Dexamethasone mostly, Day 3 pretty tired, achy, some queasiness and that into Day 4 and then I bounce back.  

Thursdays at 1pm EST I host a live online chat and love to have you join us if you're able and interested. We talk about everything from symptoms to side effects to emotional issues to the weather.  Just sign in, and click on the Discussion topic Teal Thursday.....to access the group at the appointed day and hour.  And you can always scan through the archived discussions.  Outside of that, if you have specific topic questions just open a new Discussion topic any time and members will weigh in to share their own experiences. 

Finally, while it's never a good thing to have this disease, I constantly reinforce the fact that just over the past couple of years there have been significant advancements in treatment, such that most of us are living longer and better lives than those who may have been diagnosed earlier on.  I, myself, have benefited from a clinical trial post first-line treatment...and now involved in new study that will position me well for consideration as more leading edge treatments become available.    The future for us is far brighter than we think and, over time, you'll find you're far stronger and ore resilient than you ever believed you were. 

Please stay connected to us. .Let us know how we can help.  And wishing you continued success with your treatment.
  

zedhoward

Thank you so much for the welcome and invite to the Teal Thursday discussions. I will definitely put a reminder on my phone so I can join in. 
It is so good to hear that they are finally advancing in treating this horrible disease. In 2011, my mother died of stage 4 ovarian cancer. By the time they had found it, it had progressed too far and affected every organ in her body. So when I was just recently diagnosed I was scared to death of my prognosis, knowing how silent this disease can be and I thought that I was taking every precaution right down to having my family physician order an ultrasound 3 years ago.  In hindsight, I should have requested a total hysterectomy after my mother passed. Now, my mission is to fight this disease, have genetic testing done,  as I have 3 kids and be a part of this research development!!

cassiemastro

Hi everybody! Brand new here. I’m 22yr old and I was diagnosed in 2015 with juvenile granulosa cell OVCA stage 1C. Only had surgery to remove my right ovary and Fallopian tube and have been in remission ever since. I’m currently struggling with poor sexual drive/libido and wondering if anyone else is also struggling and would appreciate others tips! 

KarenBemi

@cassiemastro - I am so sorry to hear that you have been dealing with all this at such a young age.  I actually have an appointment with a Pelvic Physio Therapist.  Some of the work that they do is intended to help with this.  I also know that in January or February at Lakeridge Oshawa, they are opening a special clinic for Cancer Patients and Sexual Health.

Fearless

Teal Sisters.....

I've taken the liberty of setting up a distinct Discussion topic for cassiemastro's issue titled Low Sexual Desire/Libido.  Please use that to add your comments.  I expect that discussion item will become a valuable resource for many.  

jrh78

Good morning! I'm 42 years old, living in Calgary,  AB. In September I was experiencing severe constipation and some other problems,  that I just attributed to a weight loss injection I had been taking since January of 2020. I decided to stop with the injections until I could get those issues sorted out. However,  the pain was so bad, I was constantly taking Tylenol and Advil just to be able to function.  I finally went to urgent care after I finished work at 6am on September 30th. I really just figured I had a bladder infection or something. I will forever be thankful to the doctor who treated me that day. She was very thorough. My bloodwork came back normal, as did the urine tests. So, she sent me to have an ultrasound,  including an internal one. Then I came back to see her for the results,  and she told me that a mass was found. She sent me straight to the hospital for a CT scan, and it sounded like they might even operate that day. But, after the CT scan, the ER doctor came over to let me know they found the mass to be on my right ovary, and to go home and wait for a call from Dr. Nelson's team at the Tom Baker Center.  As I was leaving the hospital,  I saw what I didn't know... that it was the Tom Baker CANCER Center.  I feel like I've been on a roller coaster since then. 

Surgery was supposed to remove the mass,  and a full hysterectomy,  as well, if the pathologist suspected it was cancer from looking at the mass, they would do some debulking and remove my appendix. Apparently ovarian cancer likes to live in the appendix (and yes, cancer was found there). After my surgery, I was told that there were some complications,  and they couldn't remove everything,  but they got the mass, my right ovary and fallopian tube.. and my appendix. So, I knew right away that it was cancer. I finally met with the team on December 10th and was told I have endometrioid carcinoma 2B. But, I'm waiting on the results from a biopsy of my uterus... so, it might change,  depending on what they find there. 

I have had 2 rounds of chemo so far. One was December 17th. I am taking paclitaxel and carboplatin. My first time, I had a reaction to the paclitaxel.  I couldn't breath. So, they gave me more drugs to counter act that and slowed it down.. I was fine. My second time was yesterday,  and even though I was given all of the extra pre-meds I still had the same reaction to the paclitaxel.  As soon as it started, I knew, because I couldn't breathe, and this time there were spasms shootingup and down my spine. It's pretty scary. So, they stopped it, and the doctors advised them not to try it again. So, I had a bit of the paclitaxel and the carboplatin. Now, I have to wait to see what the decision is for my next treatment.  I'm a bit frustrated,  because I feel like this is going to affect my treatment timeline. But,  it's probably for the best. I'm also just waiting for the at home side effects.  Last time I had very bad joint pain for about 8 days. I'm not sure if it will be so bad this time without the full dose of paclitaxel or not. Only time will tell. 

So, that's my story. I am married,  have no children,  but two wonderful comfort kitties. My family is back in New Brunswick,  and COVID is making it so hard. My sister wants nothing more than to come out here to see me, but the quarantine requirements on her side make it almost impossible.  

zedhoward

Good Morning JRH,
The beginning of your symptoms sound pretty much how mine had started.  I too thought it was a urinary tract infection, that I had my family physician treat as such (as they were only doing phone consults at the time, due to COVID).  However, my urine sample had came back negative. After a couple of weeks though, my stomach had gotten so distended and I had so much pelvic pressure, it felt like my uterus was falling out of me.  So, I called my dr. Again but this time she needed to see me to properly diagnose.  She felt that it was uterus related after doing a full check up, but felt it was more bowel related.....thinking diverticulitis possibly, so she ordered a ct scan, plus I kept asking her about anything ovarian, as my mother died of ovarian cancer and I have an aunt (my mother’s sister) who had breast cancer, so she also ordered bloodwork and the ca 125 test.  Finally get ct scan (3 wks later) and it showed a 1.3 cm cyst on my ovary plus it had spread to my peritoneal lining.  My ca125 came back extremely high 3000.  So she immediately got me in to see an gyn/onc in London, and that is where my journey started.  He did a laparoscopy on Nov. 27 and took biopsies, determined it was ovarian cancer as the primary.  So my treatment plan is 3 rounds of carbo/Paxil chemo, then total hysterectomy/debulking surgery, followed by 3 more rounds of chem.  I am having my 2nd chemo tomorrow.  I did not have any allergic reaction thankfully, however I did experience the severe muscle and joint pain in my legs for exactly 1 week.  I had my bloodwork done yesterday and it was great, my ca 125 went from 3000, down to 202 after 1 round of chemo, so I was thrilled!!!
I hope that they figure out something for you, that your body can tolerate and that it doesn’t delay your treatment plan.  It can be so worrisome just waiting and wondering.  Stay positive and keep advocating for yourself.  
Take care,
Lisa

jrh78

@zedhoward, thank you. I am so glad your CA125 numbers are improving! When I first met with my gyn/onc he just about had me convinced that maybe my mass wasn't cancer. My CA125 was only about 98, and he said he was working with women who had confirmed ovarian cancer with numbers at 500-1000. But, that was not to be so. When they opened me up for surgery,  I was full of cancerous fluids. My mass was 15×12×4 cm, and was attached to my bowel as well. Thankfully they were able to get it detached from there with no issues. They just couldn't complete the hysterectomy because I started hemorrhaging. So, their work was cut short. Actually the doctor told me right after waking up from surgery that I do have ovarian cancer,  and my first question to her was, 'you mean I still have to have my period?' LOL. I had been so happy not to have to deal with that again! 

I hope your surgery goes well!! 

Bluebird

@jrh78..welcome to the support site.  I'm sorry that you've had to get the diagnosis of cancer.  Thanks for sharing your story.  Your journey so far is similar to many of our sisters on OV dialogue.  Please be assured that your cancer team is looking at all the best options for you now and there are several drugs and combinations they can use.  Waiting is the hard part.  If your having lots of muscle/joint pain or any other symptoms after treatment, phone your hotline/emergency line for Tom Baker or discuss this with your team..they may have suggestions or medication that can combat the side effects.  Exercise can also help with joints and muscles aches...if you are interested we have a monthly Zoom chat for western canada with OV/gyne cancer women.  You can email or call Tracy Kolwich.  She is the western region director ovarian cancer Canada.  She can set you up.  
tkolwich@ovariancanada.org or 1877-413-7970 ext 341...hope to see you on Zoom. 

jrh78

@Bluebird Thank you for your kind encouragement.  I've never done a zoom call before,  if you can believe that I've made it through the pandemic thus far, even working from home and never having to do it.  But, I will see if I can figure it out and send Tracy an email! 

Bluebird

@jrh78...I'm sure you will do fine.  Zoom is nothing compared to cancer.  You ca  kick this to the curb and check both off your list😊  You will have to download the zoom app I believe.  If you send tracy an email..she will send you the link for the zoom to connect..on the scheduled day...I hope you do contact tracy...the group includes provinces of bc,ab, Yukon, northern territories and nunavut I believe.  I do believe there may be one or two women from Calgary..confirm with Tracy..anyway..stay strong..stay safe..

VernaM

Hello from BC, I was diagnosed with Endometrial cancer (uterus) from a biopsy in June 2015 when I was 57.  I had a complete hysterectomy done mid June where they discovered I had a second primary cancer in my right ovary. They were pretty certain they removed all of it during surgery, as it was found early but set me up for 6 chemo treatments to be sure. Those treatments ended Nov 2015. I returned to work in February but retired to enjoy my life May 2016. 

I had a good year but in May 2017 I started feeling tired & had less energy. Blood work showed very low levels and  a bone marrow biopsy early June confirmed Acute Myleloid Leukemia. I was sent to Vancouver General hospital & put through heavy chemo, then had to wait in Vancouver for a Bone Marrow transplant. The Oncologist said the cause was directly from the chemo I had in 2015 for Ovarian cancer. Only a .13% chance of that happening. 

A bone marrow transplant in October & a month later I was in critical condition in ICU. My liver & kidneys had shut down. I was bedridden there until April 2018 I started learning to walk again. I am still on dialysis 3x week as kidneys are down to 10%. But started getting stronger & feeling better going into 2019. 

In September 2018 I felt pain in my mid back right side. Several doctors gave different reasons, muscle pulled, stress & tension, etc but Physio therapy did nothing for it, or yoga which they suggested. I dealt with pain into 2020 & finally my Dr sent me for CT scan. A mass showed up. Two biopsies later (1st one didn’t get into mass) they diagnosed a recurrence of Ovarian cancer! Pathology reports confirmed it was from 2015 cancer. 

My weakened condition from leukemia meant they were not able to do more chemo, surgery was too risky, the mass is near 2 heart valves. I have an oncologist in Prince George who agreed to try radiation in July 2020. It shrunk the mass to half. The pain got worse by October & another CT scan showed it’s grown again. Bigger than prior radiation. 

They have no treatments or resolutions for my condition now, just 3 different pain meds I take. So, no good plans to try to beat this, just waiting for it to grow more & spread 😥
anyone reading my situation have anything similar? I wondered about a second radiation treatment but they say it wouldn’t be as strong a radiation & probably wouldn’t help much. Just wondering if anyone else had luck with 2nd radiation? Or pills of any kind to slow it down. 

Rosebud65

Verna, my heart is breaking for you. You have been through so much! I'm sorry that I don't have any great suggestions for treatment, but please remember that I, as well as anyone else reading your story, will be thinking of you and sending our positive thoughts your way.

I did have one set of 15 radiation treatments in March 2020 to shrink the tumour on my vagina. Then I finished three chemo treatments that I had put off while I had the radiation. This qualified me to take a targeted chemotherapy called Zejula (Niraparib), which can be prescribed for women who have a recurrence of ovarian cancer, and have shown that their tumours are still sensitive to platinum drug chemotherapy. I started taking it in July 2020, and my cancer has remained stable ever since. You do have to meet certain requirements to qualify for Zejula. You could ask your medical team about it. Best wishes.

suzieq

Hi I was recently diagnosed in Dec with Ovarian Cancer Stage 3C, I am 55 years old and it started with the first symptoms in mid August of having to pee more frequently.  Ultrasound and MRI showed a mass but without a lot of the typical symptoms for cancer and my tutor markers were not very high.  I had surgery Dec 18th and they found that it was cancer so they removed the mass and did a hysterectomy and did as much debulking as possible and now my first Chemo treatment is tomorrow.  I was wondering if anyone had any suggestions on the things to take to Chemo with them?
Thanks