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Ele

Hiiii all,  i’m almost 34 and was just diagnosed with ovarian cancer;  i’m extremely overwhelmed and don’t have a very good support system;  hoping to find some here.

Strongwoman

Welcome @Ele
  You came to the right place and will find this forum quite helpful.
 I would suggest getting the book By Your Side.  It is free and has a lot of good information in it. Here is the link
https://ovariancanada.org/living-with-ovarian-cancer/newly-diagnosed/by-your-side
  Have you spoke with your Oncology team about the anxieties and lack of support that you have?  There are resources like social worker, financial issues, and I believe even if you needed some assistance with travelling to and from appts.
  Do you have any questions specifically you would like addressed? 
 What type of cancer do you have (high grade serous or low grade serous)? Have you had surgery or going through chemotherapy first? Do you know the stage of the cancer?
  How are you coping with everything?
 All of us here have walked your walk and it is a slightly different experience for each of us as individuals but there are similarities.
I was diagnosed last year and it is hard to believe that it was that much time that has passed.
  I would also recommend taking family/friends up on offers of helping. I was usually the caregiver and found that part difficult initially but now I ask for what I need.
  Let us know what you need to know and I am sure someone will have an answer or guidance as to where to get your answers.
  Sending a hug🤗
  

Ele

@Strongwoman,  i have ordered the book in a hard copy just waiting for it to arrive.  I have talked to my team who are amazing so far;  i just feel like with the lack of family i do have i won’t have support for my “bad days”. i’m not to worried financially thankfully,  i know if i need i can arrange a ride share through cancer care. 
High grade serous clinical stage 3
no surgery for me there wasn’t an option for my personal reason;  i just feel extremely strongly of not letting this cancer take all my choices away if that makes sense so i spoke with my fertility specialists and we agreed on chemo first carbo/tax 6 rounds.  
Im not coping great i think it’s mostly all my anxiety i’ve tried to get the best picture in my head of how it will go ….. make it through the blood tests first and vitals …. go to chemo room …. get settled …. take premeds which are for me something for my anixety…. get iv ready …. saline …. drugs…. check vitals ….. wait wait wait…. flush and go home?  
Is this what you can expect as a day in the life …


thank you for your response 
 

Strongwoman

@Ele
 This is a tough road ahead. Tomorrow all you need to do is show up, the staff will do thr rest and will walk you through it. You will find your rythym with your team as your treatments continue.  It may take until session 3 to determine what that is for you. Your team will help you based on your symptoms and will try to lessen them for you.
  You will be at a low spot for a few days after treatment and then will slowly feel better. That is the cycle it went in for me.
I have walked your walk and feel for you and the anxiety you are experiencing.  Try to get some rest but don't worry you will sleep after treatment.  Don't fight it either, nap if you need to, it's how the body heals.  Drink water and if you can, go for a short walk and have someone with you. 
I also responded to your chemo question as to what to expect.  Everyone's experience will differ slightly.  I can tell you I had a memorable first one and last one.😉
My thoughts will be with you tomorrow.💕

Noreen

Hi, my name is Noreen. In Feb I was diagnosed with stage 3 serous ovarian cancer. I have completed 7 chemo treatments and I’m so glad these treatments are over for now. It just got tougher and tougher to recover from the symptoms. I have a CT scan this week and start maintenance next month. What a 180 in life! I’m looking forward to learning what others have done to keep the cancer at bay.

ToughAsTeal

Hi Noreen, glad you found this group… lots of support and experiences to share. 

I was diagnosed stage 4, March 2020. It’s so true, that with each round it can get harder. I am sure you are welcoming this break physically mentally and emotionally! Depending on your maintenance drug, there are some other chat rooms here that might be helpful to your specific one (Zejula users). Thursday 1pm est chat will start again I believe in Sept. @fearless. Never know what we might chat about in that hour! We are so much more than this afterall.  I guess by now you have your copy of By Your Side book but will include the link, if you want to request your free copy. https://ovdialogue.ovariancanada.org/home/leaving?allowTrusted=1&target=https%3A%2F%2Fovariancanada.org%2Fliving-with-ovarian-cancer%2Fnewly-diagnosed%2Fby-your-side

Keep moving forward! 

Noreen

Yes, I have requested a copy of the book. Thank you! I believe I will be on Olaparib. There is a study pairing the pill with an antibody (Bevacizumab). It is approved in the US, Europe and Japan. How do we advocate for this pairing to be approved in Canada, especially if it increases the time of recurrence?

suesage

Hi Noreen.  Welcome 
I am on Zejula and don’t know Olaparib. It is interesting to hear about it being paired  with an antibody. I am curious if you carry the Barca gene. I do not that is why I am on Zejula.  Will you be part of a trial? 

LynneA

Hi Noreen I have been on olaparib since November 2021.  My tumour was braca 1 positive.   There is a group called Lynparza and me that I received an invitation to join.   The invite was through AstraZeneca I believe.   There was also a great webinar from ovarian cancer Canada on parp inhibitors.   Perhaps someone here knows how to access the recording.  I find learning more has been helpful for me.   

ToughAsTeal

Good morning! Within the Ovarian Cancer Canada Website menu there is a section called Living with Ovarian cancer… expand that and at bottom a section for videos. This is where you can view past speaker sessions etc.  The session on PARPi is within the most recent research forum. You can fast forward to it… hopefully this link will work
https://ovariancanada.org/Living-with-Ovarian-Cancer/education-and-support-videos

ToughAsTeal

Bevacizumab is more commonly known as Avastin (I had to look that up to be sure!) I am not aware of it’s pairing with Olaparib but I know it is paired with other chemos.. I was recently on Caelyx + Avastin.

Noreen

Hi Zejula, yes I carry the BRCA gene. My oncologist told me the Olaparip is the maintenance pill I would go on. There are currently no trials for this at this time. Not sure why the different drug. I will ask at my next appointment on Sept 20.

Noreen

Hi Lynne, I agree as I am learning something new everyday. I did see the seminar on Parp Inhibitors . Thank you!

Noreen

Thank you ToughAsTeal!

Dawn

Hello.  I am 55 and was diagnosed with Stage 3/4 ovarian cancer in May 2022.  As Noreen said:  what a 180 in life!   I have been been doing weekly dense dose chemo therapy since June.  Carboplatin and Paclytaxol, 6-9 rounds.   I start round 6 next week. CT scan Oct 11, and a referral for potential debulking surgery.  And then I think perhaps some kind of maintenance therapy.  That hasn’t been really touched on yet.  I am not being critical - I am empathetic, when I say I think they are short staffed at the cancer center and very busy.  They seem only able to address current symptoms and how to remedy them.  
I think it would be good to talk with other women on this road. 
I wondered if anyone else experienced an electrolyte imbalance, (low potassium, magnesium), and I wondered if anyone else has/had a pleural effusion. 
When i asked why the oncologist had written my diagnosis as stage 3/4 I was told it is because the fluid in my pleural effusion was not analyzed to be confirmed as metastatic or not.  The 

Dawn

Looks like I posted, while still typing.  The same oncologist said stage 3 and 4 are treated the same, I intended to say.  

And well wishes to you all.

ToughAsTeal

@Dawn hello, I am sorry to hear of your diagnosis, and glad you have reached out to this group of Teal Sisters.  My story very similar to yours. Diagnosed at 55...treatment plan, surgery, and maintenance plan the same. That was two years ago.   Was diagnosed stage 4 with pleural effusion.  I responded well to chemo, and the full hysterectomy + debulking went well (we knew some microscopic cancer that could not be seen would be left behind and it would reveal as my first recurrence.....  in the last few months i read news of a new procedure that can detect the microscopic stuff too. I am tagging our moderator @Fearless_Moderator as she might be familiar with it? ).  I am still in treatment for the recurrence. I am low in potassium which i could not raise through diet, so am now on a supplement (dr "prescribed" vs me just buying some off shelf).  It is keeping my potassium at a normal level.  

Fearless

@Dawn welcome to our community.  Wouldn't it be a blessing if there was some other reason for all of us to meet?  Well, that's not the case.  We are over 900 strong, across Canada, all with their own stories about OVC survival to share.  Lots of commonalities so you won't feel alone.  Lots of suggestions to help you through treatment and the emotional turmoil this diagnosis can bring. So do use this group for help, as a sounding board.  We're here for you.

I too was diagnosed with high grade serous OVC stage 3C back in early 2017.  And my diagnosis came as a result of a pleural effusion that was affecting my breathing.  So we have some things in common.  

The first thing I should share is that every oncologist has their own "go to" plan, and each of us tends to have even some minute differences that cause treatment to be tweaked to the individual.  So if your treatment differns from mine or someone else's don't concern yourself and fall back on the recommendations of your oncologist. He or she should always be your "go to" person. That said, there is no reason to ask about other treatment plans and why they're not appropriate to you.  Sometimes you just need that curiosity to be satisfied.  

You asked about the pleural effusion.  I was drained twice.  The first time I met with my oncologist to get my treatment plan he arranged for me to be drained since I could hardly breathe by then. However, he did request a sample of my fluid be tested for cancer cells and fortunately it came back negative.  I was drained a second time as the start of my surgery since the fluid had begun to build up again and was posting an issue for giving me anesthesia.  My oncologist suggested that the chemo I would be getting post surgery would most likely stop the fluid build up moving forward and he was absolutely right.  Post surgery, while I waited to begin chemo, a little fluid began to build again but by my second cycle of chemo it was gone and never returned.  

You also asked about electrolyte imbalance.  This is something very common to most of us.  At some point the majority of us have need a boost of magnesium or potassium.  Sometimes a treatment gets postponed while they wait for it to naturally rebuild.  More often it's given intravenously before a chemo treatment.  But it is very common, and easily treated so don't be alarmed.  While I tend not to recommend google when it comes to our treatment, I did find it quite helpful in understanding the condition and what foods or supplements could be helpful to naturally maintain those levels. That said don't change eating habits or take anything OTC without checking with your oncologist. 

Yes, the medical profession is strained these days with too many getting our disease and not enough of them to expend the time with each patient they would like.  That's one reason to come prepared for your oncology meetings.  The OCC booklet, By Your Side, is a wonderful general resource as you go through primary treatment. It's particularly helpful as you prepare for your oncology meetings.  If you haven't got it, you can order it at https://ovariancanada.org/living-with-ovarian-cancer/newly-diagnosed/by-your-side  But I would also say that your response to each step of treatment often is necessary to inform the next step.  So your doctor may be waiting on completion of the rounds of chemo he's order to decide what's next.  Lots of patience required of us unfortunately but we learn to live with it.  

Other than the booklet, I suggest you utilize the OCC website for information. It's chalk full of videos and information on topics of interest including updates on clinical trials and new developments in treatment. This site of course, is always here for you 24/7 to ask questions, share information, and even just an outlet if you feel the need to explode....we all do at various points with this disease. It's nice to know OVdialogue is a site of women who've all been there themselves and are objective and non-judgemental.  You may also enjoy OCC"s monthly Teal Teas. These are zoom based discussions among other other survivors. 
https://ovariancanada.org/Events/Find-Local-Events will get you to the list of the three that are offered each month. For those you need to register to get the link to participate.  And if you have a need for more frequent but immediate feedback, join one of Teal Thursday online live chats.  I host them every week at 1pm EST.  You need only sign in to OVdialogue and click on the discussion topic Teal Thursday..... and you're in and able to exchange thoughts.  

I wish you every success with your treatment. I hope you'll keep us posted and reach out when needed.  Or just reach out to share a laugh, or a success story.  

  

Dawn

Hello, @ToughAsTeal and @Fearless_Moderator.  Really appreciate the immediate and informative responses/support.  I am interested in the online group discussions/chats.  Glad to hear potassium/magnesium imbalances are common/not unusual and remediable.  @ToughAsTeal - our story does sound very similar.  It sounds like it is suspected that there are and will be some “microscopic cancer cells floating around” in my case also.  Yes, I’m interested in the new procedure you mention for detecting that.  Best wishes for your recurrence treatment.  

maryp

Hi. My name is Mary and my mom found out today that she has ovarian cancer. She is 75. We now have to get an appointment for an ovarian cancer doctor. Found on her right ovary and spread to liver. I’m determined to be optimistic but my stress is through the roof. I’m scared but optimistic and I want to be strong for my mom. My mom is in good health otherwise. She had a hysterectomy years ago but ovaries stayed in. Today she mowed the lawn! 😃 but the waiting is really hard. I’m trying not to google stuff to freak out. I feel like time is of the essence because last year at this time she had nothing in her system indicating cancer so it’s spread fast. 

ToughAsTeal

Hi Mary, I am sorry to hear of your mother’s diagnosis and glad you found this site for support. I understand your feelings very much, both as a daughter and now also finding myself in the same boat. My mother passed 22 years ago. Back then, I was hitting the library for information, and yes, it is hard to “not google” despite doctors telling us not to.  First thing I will suggest is to request a copy of “By Your Side” (available electronically or also hard copy). I am sorry I don’t have the link, but it is within the Ovarian Cancer Canada website…or… your Cancer Centre resource room/lending library may have it (that was how I got my copy). 

The waiting game is not an easy time. Waiting for appointments, scan results, etc. But through this group you are sure to read of others coping strategies, and sometimes we just need an understanding Teal Sister for encouragement. And mowing the lawn (for me, it’s batch cooking) can be a very positive way to get through the “waiting”.  

So often, ovarian cancer is not detected until like what your mother is experiencing.  If you live near your mother, and are able, if you can attend any appointments with her it’s a great way to have a second set of ears, writing down info etc. and just being present for each other. As a mom, I know how much my daughter’s (and my husband’s) presence has helped me (even at times when they could only be on speaker phone because COVID precautions did not allow them to come in with me). 

Again, if you can, get a copy of the By Your Side book (it is free)…. And keep moving forward🌻

maryp

Thank you. I asked for a download last night of By your side. I live in another city but my work is flexible so I’ll be spending time with my parents as we navigate the treatment plan. Deep breaths until we get the next appt.

any tips of dealing with anxiety? My tummy has been a mess for weeks when we first heard from the first doctor. I need to mediate and take deep breaths regularly. 

ToughAsTeal

Meditation/deep breathing are both very helpful. Knowing that work can offer you some flexibility I am sure reduces a lot of stress.  Tips… hmmm.. something that comes to mind that often reduces my anxiety is to take charge of little things that are within my control. One example, we pre-planned parking options at the cancer centre.. if I recall correctly my husband bought a pass so we were not fumbling for payment …
when you do have that first appointment with your mom, it is likely that the cancer centre will provide information about supports (mine offers telephone counselling, also extends to my immediate family).  

NovaScotiagirl

@maryp Hi there, I was diagnosed at 62.  Right at the beginning of covid and lockdowns.  The not knowing is the worst feeling. Once your Mom meets her team and you have a plan I do think you will be able to focus on the plan rather and the process.  Speaking only for myself as the OC patient the anxiety is ongoing but if you can do some anxiety practices and focus on today it may help you cope.  
At high anxiety times close your eyes, breathe deeply and listen for 5 different sounds, or 5 different textures you can feel, it may help to break the anxiety cycle.  Best wishes for your Mom and your family whole you go through the treatment. 

maryp

Thank you @NovaScotiagirl

i had a breakdown tonight as the fear took over. 

msf72

Hello ladies, wondering if any of you have gotten the Caelyx and Bevacizumab chemo? it was offered to me as a maintenance chemo. I am seeking other options but in the mind time but I would like to hear about side effects etc.
Thank you 

ToughAsTeal

@maryp I am so sorry you had a difficult evening.  I know there are some other “topic” chats that had caregiver links… scroll up to top of this chat… top left corner there is a search window. I would do this under the “home” screen (just click on home, then search). Maybe one of the links can have more information to help you (in addition to us Teal Sisters😀🌻) At 1pm today, we have our weekly Teal Thursdays for an hour. Just go into that topic to read or post. You do need to keep refreshing screen to see others posts.
@msf72 I responded fairly well to Caelyx/avastin combo for 3 months.. then not so well in the second 3 months. Keeping in mind I am stage 4, and broken record (lol) we all respond a bit differently. After first three rounds, I had very severe hand foot syndrome. Very very severe. Subsequent rounds, the amount of Caelyx was reduced. There are a lot of sisters on this combination now or have been, if you are able to join us at 1pm today? 

Strongwoman

@maryp
  As a caregiver you can also reach out to hospice and see what programs they have for that in your area and/or they may be able to suggest some other resources if they do not have what would be pertinent to you.
Being a caregiver carries it's own unique challenges as you face a multitude of things especially if you are the one attending appts with your Mom and understand more of what is going on.  There must be a million things going through your head.  Remember to breathe, journal, yell/scream, laugh and make time for yourself.  You are only a good support for your Mom if you are whole and calm as well (and I mean in the moment as you are allowed to feel and go through anything you need to when you are not with her).  This space has a lot of information and as you find out more about your Mom's condition, type it in the search bar and see what comes up.  I am sure you will find some valuable information.  I wish your Mom well on her journey.
@msf72 I did not receive that combination of treatment but I do wish you well as you go through it.  Remember to reach out if you need to or have a good or bad day.

Fearless

@msf72 I have on treatment using Caelyx and Bevacizumab (also referred to as Avastin) since last November.  If you use the search capability of this platform you'll find the search button at the top right of your screen and typing in any or all of those three names will pull up the many discussions we've had on the site about that treatment.  As to my own experience, it's been really quite mild for me.  General fatigue from prior treatments has increased as has my brain fog. I do have a chronic cough now, more driven by the Avastin than the Caelyx, and occasional nose bleeds that are annoying to have and sometimes difficult to stop as the side effect is exacerbated by being on blood thinners.  On a scale of 1 - 5 with 5 being easy to live with and 1 being very difficult to live with I'd rate rhe combo a 4.  But there are others who would rate ir a 1 or 2 because of additional side effects like mouth sores, skin rashes. 

I hope this helps.  Good luck with whatever treatment you choose.  

GloHo

Hi everyone. I had a partial hysterectomy in Dec 2018. Pathology reports came back as inconclusive so I was referred to an oncologist. In February 2019, the decision was made to do a full hysterectomy and the results came back positive for stage 2 ovarian cancer. Underwent 6 chemo treatments, carboplatin/paclitaxel, from March to July 2019. I was fortunate that the chemo side effects were very minor. The most concerning side effect was a reduction in my platelets. 

I was continuously monitored for 2 1/2 years and, in November 2021, a CT scan showed tumors and my CA125 was over 8000. Was back in chemo for 11 treatments from December to July. The side effects were minimal, but my platelets dropped enough that the last two treatments had to be delayed a week until my platelets were up again.CT following this round of treatment showed tumors were very much reduced. 

Started Zejula 200mg for maintenance in September, but it did not work. CT in November showed progression - tumors increased slightly, nodule in lung increased slightly and cancer is now in lymph nodes.

I have an appointment with my oncologist next week to confirm next steps. My nurse practitioner said that I would be going back for chemo, carboplatin plus either Caelyx or Bevacizumab, maintenance would follow with one of the two drugs. 

I am having a really hard time mentally. My mind is racing with all kinds of scenarios. I'm sure once I see my oncologist, everything will fall into place, one way or another. It's just not knowing or taking action right now that I am finding very difficult.