Hi everyone. I am new to OVdialogue and to the whole idea of having cancer. The diagnosis came as a complete surprise in mid July. My only symptoms initially were shortness of breath while swimming with my masters swim club. I thought I had both gotten out of shape because of reduced pool training times due to COVID-19 restrictions and/or a new allergy to chlorine. Chest X-Ray revealed pleural effusion; cytology pathology report from analysis of fluid came back with stage four high grade serous ovarian cancer. I started chemo August 11, and drugs did a wonderful job of controlling side effects (“better life through pharmaceuticals” says another friend going through cancer treatments - so true!). Feeling a whole lot better a week and a half later. Pleural effusion has been reduced by chemo - yahoo! Waiting for hair loss to start - quite terrified about that, but there is no way around it, I guess. Have not met anyone else with ovarian cancer, so hoping that OVdialogue will help me feel a little less alone. Support of family and friends has been amazingly wonderful, but meeting others online with this diagnosis would be good.
@Annie1950 Thank you Annie for your message. I think being part of this group will help my mental state. You are so right. I have learned that there are a lot of things that I used to worry about that now I don’t even think about.
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In regards to your question about the specifics of your cancer - always trust your gut and ask for what feels right for you. I know many women who have asked for every piece of info related to their cancer while others wanted to know very little. There is no right way about this - it's up to you. Having cancer often makes you feel powerless or not in control, and one sort of reassuring aspect of this journey for me was know I had control of what information was given or not given to me.
Very glad you found OVdialogue and we are here to support you
This site has been wonderful for me, not only for the communal knowledge but also as a sounding board and a shoulder to lean on and I'm sure you'll feel the same way. Big hugs from Ontario.
May your chemo treatments continue to go well. It is your journey with plans made and detours encountered. Best wishes.
Welcome to the group. I am positive you will find great support here.
My story is similar to Annie's and I was diagnosed with Stage 3C Peritoneal Cancer (very similar to Ovarian and treated much the same way) after experiencing a GI Bleed in Feb of 2021. I underwent a colonoscopy, had a biopsy that came back with the markers for Ovarian Cancer and was referred to Gyno/Oncologist in Hamilton, Ont. I underwent hysterectomy, bowel anatamose and debulking on March 17th, 2021. I have just finished the last of my chemo sessions and yes, thank goodness for pharmaceuticals. We figured out the best "cocktail" for me both before and after chemo and it helped immensely. The hair loss for me was emotional but also physical. As mine came out or thinned, it hurt my scalp too much so I made the decision to remove it after that. I don't mind at all having no hair and sometimes forget to put a headscarf on when I go out. I feel people stare no matter what you do and so I embrace it and rock it!
I wish you all the best for your treatment, and hope you find some help in this forum.
Take care of you and rest when you need to.
If I can assure you of anything it's that, firstly, you will never be alone in this group and, while your diagnosis came as a shock, as it has for most of us, this is a great time in the history of treatment for ovarian cancer; a disease that had been largely overlooked in funding for research in past. Now we are benefiting from significant engagement from the federal government, a few of the provinces, and an increase in awareness that has brought about significant increase in private donations. That all translates into research, new drugs and treatments, and attraction of the best and brightest in the medical community as more and more devote their work to our disease. I was diagnosed in early 2017 with high grade serous epithelial OVC and if I went by statistics, my prognosis would have been about 3 years if first line treatment did not provide for a sustained total remission. Well, here I am.....one surgery, 6 rounds of chemo, one recurrence managed on a clinical trial for almost two years and now stable again following 8 rounds of chemo for my most recent recurrence. I'm now five years in and still going strong. That said, you'll also find many who are long term survivors where first line treatment has been totally successful and sustained. So there is much hope...not just for complete remission but also for those of us with recurrent OVC to live longer and better lives. And BTW, I too had a significant pleural effusion at diagnosis; so bad that I had become almost wheel chair bound. But one drain of fluid gave me temporary relief and the chemo cleared it up entirely.
As you're new to the disease, I am going make some recommendations. If you haven't already, access the Ovarian Cancer Canada website https://ovariancanada.org as your primary source of information on this disease. You'll find it chock full of resources, information on current research, videos on various subjects of interest...all information having been appropriately vetted for accuracy by OCC's clinical team. And, please order By Your Side. It is a wonderful booklet to guide you through your current journey. It comes in both hard and soft copy. I have both, along with it's sister publication Still By Your Side for recurrent survivors. https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources And use the Search feature in the upper right of your screen to access historical discussions on topics that might be of interest or value to you. Just type in related key words like "neuropathy' if you want information on that topic or "nausea" if you're looking for ways to manage the queasiness we often feel.
You mention you are in BC, and I believe there is a support group out there you may want to engage in. Tracy Kolwich, our Regional Director out there can provide more information on it and connect you to the group so I am copying her to reach out to you along with one of our members who I believe might be able to help in that regard since Tracy is on vacation until the end of the month. @walkabout @TracyOCC.
As you can see, this site operates 7X24 and participation can be fairly immediate but sometimes slow since it's reliant on how active our members are at any given point in time. That said, I host a weekly live online chat for members on Thursdays at 1pm EST. You might find engaging in that forum helpful. To participate you need only sign in on the day and hour and click on the discussion topic: Teal Thursday...... But you can view the historical discussions any time. Love to have you join us any time.
Finally, my best advice is to learn as much as you can about the disease. Prepare yourself for your meetings with your cancer care team with the questions and concerns you have. And always ensure you communicate clearly how you're feeling. Your cancer care team, which includes the nurses in the chemo room, are there to help you navigate this disease and treatment as comfortably as possible, but they can't do their job if they don't know you're having some issues...even little ones. I found when I was first treated that I really sailed through and credit that to great communication with my support team.
Pauline, I wish your treatment to continue smoothly and to have the best outcome possible. I'm here in Ontario where we are fairly progressive but, have found BC the work being done there to be exceptional in terms of both medical and and more holistic intervention. So you're in a good place and a good time in the history of this disease.
Reach out to us anytime we can be of assistance.....we offer information, encouragement, and sometimes just that shoulder to lean on when you need it, from people who 'get it'.
I was diagnosed with stage3/4 Jan 2018.
Had debulking surgery, removed 2 sections of my bowel and 2 ribs, and a Temporary colostomy. One round of Chemo
I was treated at Sunny Brook
Today I am all clear and feeling good!
My biggest complaint is the neuropathy in my feet from the chemo. I have an untested theory to prevent that. Put your feet in an ice bath during chemo. Worth a try.
@battleoflife12018 Neuropathy in the feet seems to be common. Another friend of mine with a different cancer also experienced that issue, but it seems to be going away gradually.
@LynneA I wonder if the intermittent mild to moderate pain behind my left knee that I felt shortly after the first chemo day is like what you described. I will look into CBD oil.
@NovaScotiagirl What do you mean by “break through drugs”? Are you describing the drugs given to control the nausea? I was prescribed Ondansetron to be taken before chemo, then received Dexamethasone steroids by iv on chemo day as well as in pill form for the following 4 days. I think I went through withdrawal on day 6 because I felt like a jellyfish - quite shaky on my feet and no energy! I will have a peek at the Side effects threads to see if anyone else had the same experience.
@kastoyles I hope I get to enjoy a few months without body hair as I normally swim and am forever shaving. Someone else described how they lost their head of hair during chemo but not their chin whiskers - how unfair is that?! So happy that you have passed you fifth anniversary. That is encouraging to hear. I am aiming to end up on that side of the statistics.
As mentioned before, ensure you keep open and timely communication with your cancer care team to enable them to manage your meds in the most effective way.
For the rest of our members reading this thread, there have been some great suggestions here for PaulineJ to assist in management of side effects. But a reminder to all, that what works for one is not necessarily right for another. Even simple OTC meds or the use of cannabis products should be reviewed with your care team for suitability to your own personal situation. Even some foods can be contraindicated for some medications. I know when I was on Olaparib for two years not only could I not consume grapefruit, Seville oranges were also restricted....the main ingredient in marmalade.
PaulineJ you show such great spirit and natural curiosity. Both will serve you well as you move ahead in your journey. Good luck....and sending positive thoughts your way.
I am Walkabout who Kathi mentioned in her post- I would be so happy to meet you over the phone or in person which ever your preference and tell you more about our Vancouver Support group - I am a 22 year survivor and so long ago felt like you -" I have to talk with some else going through all of this" - so with a few others so long ago, I started the support group and have watched it evolve to its place today in our lives- its such a gift to share and listen and not feel alone. I also am a swimmer and went back to the water for my mental health well being in February and have been swimming lengths for an hour each day -so we have a things in common just from the get go;) - I look forward hearing from you or meeting you on our Teal Tuesday session ( on holidays for August) a on Zoom the 2nd Tuesday each month- September 14th at 10 am - a link is sent out to us by Tracy Kolwich - Diane
" You mention you are in BC, and I believe there is a support group out there you may want to engage in. Tracy Kolwich, our Regional Director out there can provide more information on it and connect you to the group so I am copying her to reach out to you along with one of our members who I believe might be able to help in that regard since Tracy is on vacation until the end of the month. @walkabout @TracyOCC.
I saw the oncologist quickly after that, but all of the biopsies, blood tests, CAT, PET, MRI had indicated cancer, but with no known primary source. He planned out a intravenous chemo regimen for me. However, before it started, the gyne-oncology team said they thought this was a cancer with a gynecological source, although they weren't sure what type. I moved from abdominal unknown source caner to some type of gynecological cancer, but still with an unknown source. Thank goodness both sets of oncologists had the same chemo regimen in mind, so I didn't lose any time.
I started chemo on 16 March 2021 with paclitaxel and carboplatin. The paclitaxel caused me to go in to anaphylactic shock. But that first chemo session (after they had stopped the severe allergic reaction), I was able to take the carboplatin. I was switched to dositaxel and although we found out I am allergic to that too, it is not as severe. Load me up with enough anti-histamine and do the drop slowly and I can handle it. We did discover though that the saline flush that was done after carboplatin, at the end of a chemo session, caused a painful burning session. It would leave a burn at the site of the intravenous and up the vein (arm), almost from the inside out, that took ages to go away. As I sit here in September 2021, I still have a burn on my hand where the last chemo session took place on 16 July 2021. No feeling in the area, either. Instead of using saline, the chemo oncologist, pharmacist and nurse decided to switch to using a glucose flush. That worked very well, until a mix up at my last chemo session.
I had four chemo sessions, then a CAT scan that showed reduction of several nodules, then debulking. The debulking was uterus, fallopian tubes, ovaries, omentum and appendix. I offered up my tonsils while they were at it, but strangely they didn't think that was a good idea. The surgery took place on 7 June 2021 and two and a half weeks later I was back to chemo. A complete diagnosis only came in late July with the lab results of the organs removed during debulking: High Grade Serous Ovarian Cancer.
About the same time as I got the diagnosis I got the results of genetic testing. No genetic connection at all. My two sisters, their daughters, and even a granddaughter were very relieved to hear that.
My last chemo was 16 July 2021. Another CAT scan in early August showed everything, except in two lymph nodes was gone. The nodules in the lymph nodes had gotten large, about twice as large. I couldn't quite grasp how they could do that in the midst of chemo. I heard the results of the CAT scan from my GP four days before hearing it from my oncologist. I must admit, I thought it was really bad news that the lymph nodes were enlarged from earlier CAT scans. I catastrophized for those four days. I was super surprised when the oncologist started the conversation with "This is good news." she didn't think the lymph nodes were enlarged necessarily by the cancer. I could have had a slight infection or they could have been enlarged by the COVID vaccine second dose that I had six days before the CAT scan. That helped. Given that this was six days before my 65th birthday, it really helped the celebration.
On 10 September 2021 I began a regimen of daily dose chemo with Niraparib. So far so good, although low to moderate nausea, by my scale, has been a feature of both the intravenous and capsule chemo. I have to tell you, I had never had nausea before that didn't start with my stomach upset. So after each chemo, the oncology nurse would ask me if I had nausea, and I would answer no, but that I felt "yucky" - just low grade not feeling great, usually the third to fifth or sixth day after chemo. It would just get better the further I got from the chemo date.. I never took the anti-nausea medication that I had been given, because I wasn't realizing that I had nausea. With the Niraparib, I finally figured out what was nausea - mainly because low grade yucky turned into to feeling like there was something in my throat around the base of my neck, then to gagging. No vomiting - yet. Now that I have got a better handle on nausea (how foolish I have felt), I'm taking the anti-nausea meds and they are really helping. The nausea has really been my only side effect so far. Well, I lost my hair, but that didn't bother me - saved on haircuts. Its growing back in now and friends and family think I have a new gamine style.
I have no idea how long I will be on Niraparib, or what would be the deciding factors on that, nor really what comes next. But I have a good oncologist and will talk to her on 28 September to find out.
In January, I thought I would die in a month and panicked, I tried getting everything in order for a death while having trouble breathing. All the activity of chemo, surgery and CAT scans kept me distracted, but I was still expecting the worst news at any moment. With the results of the last CAT scan showing lymph gland enlargement, I didn't think I might even make it to my sixty fifth birthday. I harboured those fears even when the oncologist said otherwise. It was only when I found your website that I was better able to put this journey in some perspective. Seeing the posts of others, and watching the videos really helped. I live in a small town and although I have been very open about what is going on, I have not found anyone who could say "me, too". Your site and the folks that participate in it, are the people I need to know.
I have done a lot of relaxation training and guided imagery during the intravenous chemo sessions, and to a certain extent with the surgery. I'm finding it a bit harder with a daily dose capsule. I envisioned the chemo travelling through my veins and body, and like Ms Pacman munching the cancerous cells. It helped during chemo, but it hasnt been effective with feelings, regrets, etc of mortality. I'll have to work on that and with this website, I think I can.
By the way, I am 65 years old, never had any children, married with three step kids and an adopted child - all are adults now, and have been amazingly lucky to have had very little in the way of illness, broken bones, or surgery (just one on a shoulder operation) before all of this. 2021 has been a year of firsts for me: first time my lung was drained, first MRI and PET scan, first thoracic surgery, first cancer diagnosis, first chemo, first severe allergic reaction, first surgery to remove a bunch of organs, and first time on chemo pills. I'm sure there will be other firsts, but who knows what they will be. I just hope they go on for a long, long time.
More than enough info to start and its been therapeutic doing it. Thank you for reading.
Welcome to OVdialogue. I'm so glad you're here and part of our community.....although sorry it always takes a diagnosis of this lousy disease that brings us together. Wow, quite the journey you've been on and how much you've taken in stride. And nice to see you've already connected with a kindred spirit out your way.
Let us be a sounding board when you need it. I agree that writing your story and your thoughts and feelings and fears can be enormously therapeutic. Sending it to a group who get it...who've all walked in your shoes in some way or other...is a big bonus. At least it has been for me. I'm not only the Moderator for OVd, I'm also a survivor (high grade serous stage 3C) in my fifth year of treatment, feeling strong, and loving each day I have ....hopefully many more to come.
And beyond listening, if there is anything else you need from us you have only to ask. We're here for you every step of the way, even if it just means lending an ear when you need it.
Big hugs and know you're in everyone's thoughts...
I don't have official staging and grading yet, as they could not get that information from my biopsy, but they are going to give it to me after surgery I expect. That definitely disappointed me, but hey, what can you do?
I'm scared, but hopeful. I know it's late stage, the mass is over 34 cm long.
I'm currently doing my second round of chemo to shrink the tumor, and then they plan for a debulking after my third if enough shrinkage (seriously think this is probably the only time one hopes for massive shrinkage! LOL) has occurred.
I have just had my port put in on Tuesday as well, and they accessed it today for the chemo.
I asked Cancer Care Manitoba for a peer, but they don't have one for Ovarian Cancer currently, so I plan to work hard to recover and be that person! However, if there is anyone from Winnipeg who's been there in my shoes, I'd love a buddy who might want to meet up for coffee sometime?
I'm a 40 year old mom of two, aged 16 and 11. I have a Shiba dog, and two cats, and a job from home I definitely plan to return to.
Nice to meet you
I'm happy to inform you that a year and half later I'm in excellent health and cancer free. I'm currently enjoying a vacation in Florida. Life went back to normal for me, long may it last that way, and I hope the same will happen to you..
You've found the right site to learn, listen and sometimes lean on people as they will you. I'm not sure but I think there's a young survivor's group that you'll have a lot in comon with.
Big hugs from Ontario:)
So please do lean on us for support. We won't let you be alone in this.
If I have any immediate suggestions for you, they are:
You mentioned a desire to find a buddy in Winnipeg. We have not, as yet, created a buddy community..although it's something I would love to entertain at some point. But there is/was a support group in Winnipeg that met monthly you might want to look into. I don't know current status because of Covid. They may be back meeting now, or went virtual when Covid hit, or like some temporarily disbanded. But I believe the organizers can still be reached by emailing Val or Doreen at [email protected] I am also copying the OCC Regional Directory for Manitoba and Saskatchewan, Stephanie Gosselin @StephOCC in hopes she can reach out with any other local suggestions for you.
- use the ovarian cancer canada website as your primary resource, after your cancer care team of course, for information on this disease. If you spend some time perusing the website you'll find an enormous volume of information from resources available, event announcements, shared stories, updates on research and trials and more
- order the Ovarian Cancer Canada booklet By Your Side if you haven't already. It comes in both soft and hard copy and free. So many of us found it highly valued as a guide throughout our primary treatment. You can access the order form at https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources
Please continue to reach out anytime and tell us how we can help...or just use us as sounding board or virtual shoulder to lean on if you just need or let off some steam in a safe and caring place.
Big hugs to you...I sure you need all you can get right now......
This site has been a source of comfort, inspiration, education and companionship and I'm sure you'll find it to be the same for you.
A big hug from the GTA:)