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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
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🤗
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
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.💕
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?
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
And well wishes to you all.
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.
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.
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).
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.
i had a breakdown tonight as the fear took over.
@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?
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.
I hope this helps. Good luck with whatever treatment you choose.
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.