Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?

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  • nadiaC
    hi @Scottishlass. I’m glad to hear that your first treatment went smoothly. That’s really great news. The alertness might be due to the steroid that they give as pretreatment. I had to take oral decadron for two days after my treatment and it kept me quite alert. I’m not sure what the pain could be related to. If you have a nurse you can call it would be a good idea to do that and tell them what’s happening. Don’t be sure or feel like you are bothering anyone. They can help you deal with side effects. Best of luck and do keep us posted! Rooting for you all the way...
  • @Scottishlass , I am glad that everything went well for you for your first treatment.  The not sleeping thing is a side-effect of the steroid that you take after treatments.  Give it a day or 2 and should start sleeping better, but if you have problems shutting your brain off...try listening to a meditation or something...anything to keep your mind from working.

    I did not have the pain so I would definitely call your nurse navigator to let them know what is happening and get their advice.  It could be something a simple as a tense muscle but...better to find out for sure.

  • nadiaC
    Just writing with an update. I had cycle 6 of chemo on Oct 28 and today I got the results of my CT scan. I used to have a 0.7 cm tumour which is now too small to
    measure and I used to have signs of peritoneal carcinoma which are now almost completely resolved. Chest CT is clear. I was hoping for NED, but my oncologist called it a ‘beautiful scan’ and said she was altogether very happy with how my cancer had responded to the chemotherapy. My CA 125 has been in the normal range since September. She told me to focus on living well, eating well, reducing my stress and increasing my pleasure. That last bit sounds great...just have to figure out how to do all these things now 😊
  • This is great news @nadiaC! I am so happy for you!!
  • Wonderful news Nadia! I am at the beginning of my journey and to hear your news gives me lots of hope!
    have fun increasing your pleasure !!!! @nadiaC😀
  • Great News @nadiaC . Follow your Dr's orders now and increase your pleasure.  

  • Fearless
    @Scottishlass just playing catch up. We were without power and internet since Sunday noon.  So glad your first chemo went well. Like the others said, steroids a probable cause of your insomnia...along with an active brain.  Tell your team...if they feel they need to prescribe something they will. But give it this week to see if it disappears first.  As for the pain in your side, do let them know about that right away if it's still there. If it's disappeared by now still let them know about it when you're with them next.  No idea what that might be but we all suffer or suffered from weird one-of aches and pains from time to time...usually nothing to be concerned about but better let the doctor make that determination.  Good luck with the rest and keep us posted.
  • Hello @Scottishlass - hope you are able to sleep better than the first days after your treatment - I had problems sleeping at night, usually away for two or three hours - I just gave in to it and read or did Wordsearch, etc. Then during the day, quite often I hit a wall and just had to lay down. As treatment progressed I found my fatigue increased and I had to have a nap either in the morning or afternoon.

    I had pain in my legs that started within 48 hours of treatment and lasted for two or three days. I also occasionally got a pain right over my left eye. It came about a week after treatment and lasted for a day or so. The doctor wasn't able to explain that one...but it went away after treatment.

    You've been through the first treatment and know what to expect  - for me that was the biggest hurdle. You can do it! And as the other Teal Sisters mentioned, if you are having difficulties, or questions, contact your health team.
  • Hi my name is Robin. I was diagnosed with ovarian cancer on November 1st. I start chemo this Friday. I'm in a lot of discomfort already and nervous about adding to that with chemo, but I'm also dying to get started so I can start fighting this thing! I live near Sunnybrook in Toronto so that's lucky.
  • Hi @RobinD, I am sorry for what you are going through.  Sounds like you have the right attitude to start your fight.  What chemo drugs will you be taking?  
  • Fearless
    Fearless Legacy
    edited November 2020
    @RobinD Welcome to OVdialogue.  I'm so sorry to hear of your diagnosis.  But rest assured, you're not alone.  This community you've joined is 600+ strong and here to support you through your journey.  

    My first recommendation, if you haven't already ordered it, is to get By Your Side. It's a booklet the Ovarian Cancer Canada provides that is enormously helpful in understanding what lie ahead for you.  Go to: to order it. It comes both as a soft copy download or hard copy. 

    Next, how you're feeling about you diagnosis and upcoming chemo just exacerbates any discomfort you're feeling physically.  I know it's not easy. We've all been where you are. But try to take a deep breath and focus on the outcome.  Treatment these days is so effective and there are so many options.  I am in Ontario, having been treated at both PMH and the Kingston Cancer Center but know Sunnybrook well and you are in excellent hands with them. 

    Please do tell us a bit more about your diagnosis and treatment plan, if you're comfortable sharing.  The more we know the better we can share experiences that align to your situation.  I'm thinking things like type and stage of your cancer and is your plan chemo, then surgery, then chemo or something other.   

    Finally, no matter what you see that others have experienced, whether on this site or elsewhere, always remember we all respond and react differently.  When I was diagnosed in 2017, I expected all kinds of reactions to the chemo. Everything from loss of hair, to horrible nausea, weight loss, fatigue, bowel issues.....I could go on based on what I read on google (my big mistake but I didn't know OCC and this community existed then).  Well, no hair loss at all, the odd queasy feeling from time to time but nothing I needed medication for. I sure didn't lose weight. I was ravenous the entire three months and put on 30lbs.  Mild constipation that a Senokot once and a while took care of.  Yes, lots of fatigue usually on day 3 and 4.  So for me, it wasn't nearly a tough as I had expected. And you will find the staff in the chemo room the warmest, most caring people; there not to just administer the chemo but to make it as comfortable for you as possible. The key is communication and ensuring they know if you're feeling discomfort so they make adjustments.  

    Robin, I"m now almost four years into my journey with high grade serous stage 3C and still kicking.  When I was first diagnosed my first thought was that I wouldn't see my 70th birthday. But unless I get hit by car in the next two weeks, Ill be 70 on the 6th and I fully expect to see 75. And so many of us have similar stories to share; many living with the disease much longer than me.

    Keep us posted. Reach out as you need to.  I host a live chat every Thursday at 1pm EST. Love to have you join us. Just sign in and click on the Discussion title Teal Thursdays to enter the chat.  
  • Your story is inspirational! @Vol Mod Thanks for the hope. I need that right now.
    I am 59 but I have two teenage boys that I am so worried about. 
    My mother died of breast cancer when I was 22. I have a lot of PTSD from the many years she suffered. I don't want that for my boys. So I'm fighting.
    Right now I am suspected Stage 3 serous, but no tissue biopsy yet. I have 3 rounds of chemo over 9 weeks, followed by surgery, and then more chemo. Drugs are carboplatin and paclitaxel.
    Does anyone have comments on what supplements are safe to take? 
    Also what about these ice packs for your hair? Worth it or not?
  • Hi Robin@Robinb
    I too was diagnosed  in late September with aggressive stage 2a. I have had the surgery about 6 weeks ago and started my chemo two weeks ago!

    I think no matter what you do you may lose your hair I am taking the same carb/paxel I go every three week until April next year! Actually getting the chemo was not bad at all, I was very nervous but they were wonderful at Oshawa Cancer centre 

    Side effects for me were can’t sleep but do not feel tired, joint pain . I decided to cut my hair in prep for it coming out as I was told it would probably be gone by next treatment !

    I too just want to get started and get it done, now I just take it one day at a time, I feel good and I am still working from home .

    This group is awesome as everyone has been there 
    maybe not with the same side effect but with the same feelings.

    keep us all posted on your progress 

  • @RobinD - I was 20 when I lost my mother to breast cancer, so I know what you went through with such a devastating loss at an early age. My husband was amazing during my treatment, but it would have been wonderful to have Mom around. After I was finished my chemo, I had genetic testing done and am glad to know I don't carry the BRCA genes.

    As other mentioned regarding hair, mine was going to to so I had it shaved off after my first treatment. It was one thing I had control over at that time and I was going to decide when I lost it - not the chemo treatments. Whatever way you choose to do it, the hair will grow back! This time of year one can get away with wearing colourful toques to keep cozy.

    Stay strong everyone!
  • Thanks for the feedback! So much to absorb
  • @RobinD, I was on the same drugs (as most are for OVC).  I was diagnosed after my Surgery on Nov 26, 2019 (coming up to my 1 year anniversary).  
    I did lose my hair but not until after my 2nd treatment.  I didn't take anything to stop it because I was told it was going to happen so I just let it go.  I waited to cut my hair until I saw it coming out in clumps.  Then it was gone.  It is a decision I do not regret.  It was hard to do...and I cried my eyes out doing it but...Once it was done, I got over it quick.  (if possible, book yourself in for a nice Scalp Massage at a hair salon when you are is amazing and feels so good.  I can give you a name, it is worth the drive to Whitby to do it especially if you are still in lock-down).  I am actually booked in for my first hair appointment since my treatment finished (at the end of April) on Saturday.  I am looking forward to it.

    Make sure before you go in for your treatment, you go in prepared.  You are going to be there for a LONG Time.  Bring a blanket, maybe a little pillow, books, phone, IPads, whatever you need to keep you from getting bored.  Bring Snacks and stuff to drink.  

    For the first couple of days after my treatment, I was pretty alert all the time.  it was very hard to rest.  But keep trying, any rest is better than no rest.  

    After I had finished taking my steriods (treatment on Thursday so friday & Saturday with steroids at home) about half way through the day on Sunday, I started getting the tingly fingers and feet of the neuropathy.  It was weird.  And I kept playing with my fingers because I couldn't believe the feeling.  It didn't hurt but felt weird.  I did get some joint pain but nothing too terrible.  I had very little nausea.  But when I started to feel it, I took 1 little pill and that was it.  I did that twice.   
  • So great to hear thank you!!! :)
  • Fearless
    Hi again @RobinD I noticed you asked about supplements. Don't take anything without consulting with your oncologist.  And I didn't lose my hair because I couldn't tolerate the Paclitaxel so I was given Gemcitabine instead. It's the Taxel that causes the hair loss. Like most though I had the double whammy with Carboplatin being the other drug.

    KarenBemi made some great suggestions about preparing yourself for Friday.  Wear loose comfortable clothing.  As she said, you can eat while being administered chemo so pack something to nibble on or lunch if you happen to be there over the lunch hour...or if you're like me, both LOL.  I always took bottled water. It helps to hydrate but I always found the hospital water tasting icky so preferred nice clean tasting spring water.  You will likely get antihistamines to combat  side be prepared to dose off.  And make sure there is someone to bring you home. You'll be too sleepy to drive.  Smartphone, iPad, books, magazines....whatever to pass the time.  

    So sorry to hear you lost your mom to breast cancer.  Back then treatment was far more brutal than it is today so I understand the PTSD hangover from that experience.  As for your sons, I can also understand your concern. Mine only child, my son, turned out to be my rock all the way through and even today.  Our children are all different, but mine really needed to be involved, no secrets, everything honest and upfront. So that's the way we continue to manage and he's become, next to my husband, my biggest cheerleader.  But if you need help in communicating to them, I believe Sunnybrook has a Wellspring group where you might get some advice...or ask your oncologist for a referral to a social worker at Sunnybrook. I've had one that I talk to monthly for three years now and in hindsight wish I had reached out right from the beginning. For me, Julia has been a huge support helping me stay balanced, keeping my perspective positive and helping me access other resources that I needed from time to time.  

    Let us know how you make out on Friday. We'll all be rooting for you.
    Fearless (Kathi)
  • Hi! I’m Megan. I was diagnosed with low grade ovarian cancer stage 3C in 2018 and I just found out that I’m experiencing a recurrance after being NED two years. I’m 28 and I’d like to learn more about this disease and how to live a long healthy life. 

    Nice to meet you all 
  • Welcome Megan @meganhascancer.  Glad you found our site.  I hope you find your answers and support here.  Sorry that your having to go through a reoccurrence.  There are a few young OVC ladies I believe that you may also want to connect with.  @Fearless - Vol Mod might be able to connect you.  Where are you in Canada?  Have you got a plan for treatment yet?  
  • Fearless
    Hi @meganhascancer Like Bluebird said, glad you found us. So sorry to hear of your diagnosis and now recurrence. You're so young to have to battle this disease, but your age adds to your resilience and stamina.  It's a tough road we're all on but not one that can not be conquered.  

    It's wonderful you're trying to learn more about your disease. I truly believe knowledge gives us the power to be in more control over our futures...especially making informed choices in our treatment and how we want to live our lives.  I was diagnosed in 2017 (high grade serous 3C) and over the almost four years now have gone through surgery, chemo, a recurrence, a clinical trial for two year and now, only in the past week, back into chemo.  During all that time I've had a great life....lots to do out at my retirement property in SE Ontario, met some wonderful OVC survivors through this site and locally who I know will be friends for life, and I've gotten very active as an advocate for change in how they view and treat our disease.  This may not be the life I had imaged but one I'm grateful for. 

    The first place I'd like to steer you to, if you haven't exhausted it already, there is the Ovarian Cancer Canada website where you'll find a wealth of information on your disease and including two booklets I highly recommend you order: By Your Side and Still By Your Side. And, you can go to "contact" and reach out to your regional executive. She can likely point you to more sources of information and possibly support groups and contacts local to you.  

    Bluebird mentioned a group of young survivors. Reach out to @jiselle16 on the Discussion topic Young Survivors or in a private message. She was diagnosed at 31 and I know was looking to start exchanging communication with like aged survivors.  

    We also have a live chat every Thursday at 1pm EST.  Please join in if you can.  We talk about everything under the sun, from the weather where we are to plans for the holidays to our newest treatments and experiences.  You only need to sign in and click on the discussion topic Teal Thursdays...and voila, you're in.  

    Finally, you are not alone. This community is over 600 strong and we're all here to support each other with information, a good laugh sometimes, and always are warm touch..even when it's has to be virtual.  So please keep us posted on your progress, reach out any time you have questions we can help with, and always feel free to just let us know what we can do for you.
  • jiselle16
    jiselle16 Community Champion
    @meganhascancer As @Fearless - Vol Mod mentioned, I'm happy to chat with you if you would like the perspective of a young survivor. 28 is way too young to be dealing with this awful disease, and there are some unique challenges that young adults face. Let me know if you have any questions!
  • Hi everyone. My name is Caitlin and I am from Prince Edward Island. My mother who is 55 just received news that she most likely has ovarian cancer and I am really struggling. She went to the hospital with shortness of breath which was then explained by acities and pleural effusion. So far she has had bloodwork, CT and ultrasound. It appears that her ca125 is 305 and they have found what they believe to be tumors on her omentum. They have not yet found a primary mass on her ovaries. They are hoping to do a biopsy next week and then consider making a plan from there. I am just worried. Does this sound like really late stages?? Is there hope?? 
  • @prayersformom,  hi Caitlan..I'm sorry that your mom is going through all of this..the testing and diagnosis..I know it has to be extremely stressful for you and your mom right now..they will have to get the biopsy results for probably a definitive diagnosis to know what kind of cancer and then they will be able to have a plan for exactly what treatment your mom will need.  I can tell you that there are different treatments and some new treatments for ovarian cancers that for some is a cure and for others gives us a longer life with quality that we would not have without the treatments we have...I know it will feel like a life time before you get the results and a plan...but your moms team will make the best plan ...and Caitlan...if it is cancer, if the cancer centre has a spiritual/psychological program attached , it may be able to be utilized by both your mom and  family, you for support and counseling.   From my personal experience my psychologist  has helped me so much with support and helping me with living with my cancer. ..Caitlan..there may also be support group near you for your mom and or you/family...the hospital/cancer centre may have more information for you...I hope that helped..
  • Fearless
    @prayersformom...Caitlan, I'm happy you found our community, and if your mother is actually diagnosed with OVC, that she connects with us as well.  And I am truly sorry to hear your story and what you're all going through right now.  
    Your mother's situation mirrors mine to some degree. It was actually a breathing issue, that turned out to be caused by a pleural effusion, that led to my cancer diagnosis. Although for me, it was a tumor on my right ovary the size of a very large grapefruit. Even then, I was stage 3C. Advanced but not the worst it could be.  But don't get ahead of the investigations. They do need to do what they do to determine if is cancer, what type of OVC, and then stage to begin to establish an appropriate treatment plan. And I can say that there have been so many advances in just the last couple of years that the prognosis for most of us is so much better.  Today we are living longer and better lives...even when the cancer can not be totally eradicated. I liken that to having diabetes, a chronic condition, but managed with insulin. That could be the path for your mom. It could also be full remission after treatment.  Among my own network I have gals who are 5, 10, 20 and even one 32 year survivor..and most them diagnosed at stage 3.  So there is hope for sure.

    Right now the most important thing is to arm yourself and your mother with all of the information you can gather...and Ovarian Cancer Canada's website is the place to go. Lots of information on our cancer, treatments, stories. And especially a booklet I urge you to order...By Your Side. It will help you prepare and manage her journey from diagnosis through first-line treatment.  You'll find an order form for a  soft copy of the booklet under Resources.  I also suggest you click on Contact and reach out to the Regional Director for the Atlantic. She may well have some local resources and support groups she can direct you to..  

    Your mother is truly blessed to have a daughter, such as you, to support her at this difficult time. My own son has been my rock throughout my own journey, which is at the four year mark soon. I can tell you and your mother, that we are a far stronger and more resilient community than most would imagine.  Try to stay positive and informed and keep in touch with us.  You and your mother are not alone. Our community here is 600+ strong and all of us here for whatever support we can provide.  

    My thoughts will be with you over the next weeks.  Please reach out as you have questions or need information...or just a place to share your feelings.  <3
  • @Fearless - Vol Mod thank you. Did you receive chemo first before surgery or have the fluid drained at all? My fear is that it will take too long to get through the medical system to the doctors she needs. How long from diagnosis wa sit before you started treatment ? 
  • Fearless
    @prayersformom There never seems to be an consistency in how things are organized, province to province and even hospital to hospital.  My GP sent me for the scan and three days later called to tell me there was a tumour and pocket of fluid under my right lung...likely OVC...and she would schedule a referral a gynecological oncologist (btw, I am assuming your mother is either already in the hands of a gyn-onc or that's being organized for her).  That appointment was fairly quick...within 10 days.  He confirmed the diagnosis and laid out his Plan A and Plan B. Plan A to schedule surgery and hopefully get everything, then 6 cycles of chemo to follow.  Plan B would be to go in and if there was more than could be dealt with in that surgery, close me up, send me for 3 rounds of chemo to reduce the amount of surgery, then go back in and remove everything, and then 3 more rounds of chemo to finish off.  I didn't have to go to Plan B, since A worked just fine.  It seems my treatment though was not the norm with most of the gals I talk to. Most of them automatically did chemo, then surgery, then chemo without an exploratory to start off. Some had biopsy's first, some didn't.  And much of the treatment plan is dependent on which of the ovarian cancers it is as well as the stage. The OCC booklet, By Your Side, provides some information on the various types of ovarian cancer.  But for me, it was only about 2 weeks between seeing the gyn-onc and my surgery/beginning of treatment.  Then chemo started about 4 or 5 weeks after my surgery.  

    As for the fluid, by the time I saw the gyn-onc at Princess Margaret in Toronto, I could barely breath.  I couldn't even walk from the car to the entrance of the hospital.  So he arranged for me to go to Acute Care the afternoon I saw him to have the fluid drained. What a relief that was!  They just insert a tiny catheter and drain the fluid off.  2 litres for me the first time.  But it was quick (maybe 10 minutes tops) and painless, and breathing is back to normal right away.  It does come back though so they had to drain me a second time just before they started my surgery.  Between the surgery and chemo it goes away.  

    I hope this helps.  And BTW, my CA125 was over 900 when diagnosed, so don't let a 300+ score scare you.  That said, don't put too much reliance on the CA scores.  The test is the best of what we have available as a tumor marker but very unreliable. It's the CT scans that really count...they provide the definitive picture of what's going on..

    We have a live chat every Thursday that you and your mother are welcome to join. Usually a handful of us get together.  I host it at 1pm EST, and all you have to do is sign in  and click on the Discussion topic 'Teal Thursday' and you're in. You might want to scan through it to see what we talk can be everything from the weather, to sharing our experiences with the disease.  Those in treatment find it most useful to get answers to immediate questions they might have.  That said, always rely on the medical team.  Each of us has had our own experiences but, given we all respond and react differently, what works for one doesn't necessary mean it will work for all.  
  • CountryLiving
    CountryLiving Community Champion
    Hi Caitlin @prayersformom glad you researched and found this group. Your Mother has a very encouraging and supportive daughter. She will appreciate you along her journey. Knowing that your mother has had many tests and they have scheduled a biopsy sounds like things are moving along. I am 9 months from completing my treatment. I did not have a biopsy before surgery because of the type of cyst. From appt with gyn, i was referred to oncology gyn surgeon who I saw 11 day later and then surgery 3 weeks later. I did not have chemo before surgery just after. But as the other ladies have said, everyones treatment is different depending on what and how it was diagnosed. My CA125 was similiar to your Moms and it was what flagged me for cancer as the CT scan could not clearly see or diagnose my mass. Have faith in the medical team and do ask any questions to them. Keep in touch.
  • CountryLiving
    CountryLiving Community Champion
    Hi @RobinD welcome to the group. I am close to your age and have 2 sons in their 20s. They have been my rock along with my husband. I too am treated in Toronto but at Princess Margaret. Like @KarenBemi I just celebrated my one year from surgery Dec 5 and like her it was in surgery where I was diagnosed and had the debulking surgery. I had chemo after healing from surgery. I am 9 months from chemo! Before chemo some hospitals have a education session on what to expect in chemo. I took my cell phone, and laptop to watch movies, and packed some snacks like crackers, protein bars, and banana bread I had made and water bottle.The pre chemo drugs made me very sleepy so I just dozed on and off most of the time. It is a very long day. My treatment room provided blankets and pillows if I wanted them. I wish you all the best and you have got a great attitude which certainly helps. Keep in touch.
  • @prayersformom Hi Caitlin, very sorry for your Mom's diagnosis.  Welcome to the group.  I am not sure what part of the Island you are from but if you every need support, My mom lives in the O'Leary area.  She was here with me throughout my treatment and may be able to help you deal with your thoughts and feelings as support person to someone with Cancer.