Looking for any Clear Cell Carcinoma Sisters! (Ontario)

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  • @jiselle16 , I got the app insight timer and yes it does help reduce the aniexty , thanks for the info
  • @Twilight63 - it's hard to overcome the stress when you're faced with treatments, diagnosis, prognosis, people hovering over you, asking how you are and what can they get you and sometimes you just want to disappear and shut the door. Then do it!  Find what relaxes you whether it's music, reading, meditation, watching the tube or taking a bath. I found that many times I hit a brick wall and had to go lay down. I didn't necessarily sleep, but closed my eyes in a dark, quiet room.

    Sleep was a major issue for me. My schedule was so out of whack that it took months to get into a normal routine again. I was fatigued from the chemo and always had a nap during the day, either morning or afternoon depending on how I felt. But at night? I woke up every night between one and two and was awake for at least two or three hours. Okay. That was my new normal for the time being. I played games on the iPad, or read and didn't stress out because I was awake. Eventually I fell asleep and slept in a little later in the morning than I normally would. Later on, I had a nap. In fact, my husband made sure I went to bed everyday to rest. It was what my body needed and since I couldn't get eight hours straight, I took it in chunks.

    Menopause has made sure I still have sleep issues, but not to the extent that I had during chemo. I usually wake up, check the time and fall back to sleep. There are nights when I'm awake for a while, but then I'll sleep better the next night.

    I listen to relaxing sounds, use lavender hand cream, do some deep breathing and read before turning out the light. I try to get up at the same time every morning. Though sometimes I sleep past the alarm..LOL  Oh well.....
  •  thanks for the info . I go for my second chemo this Thursday coming up and not that my sleep is good but with the dex it will be making it harder again so maybe I will get my iPad out.
  • Do you eat healthier now or did you always eat healthy ? I have been avoiding a lot of foods and not sure what I should and shouldn’t do . I am over weight by 50 lbs so now I avoid sweets and try not to have much for red meat . Decaf coffee and eat more veggies and fruit . Did you change your lifestyle ?
  • @Twilight63 I didn't change any patterns.  I'm lucky that my go to foods are veggies and light protein and of course a little sugar.  I really enjoy a glass of wine and have a big one every night.  Pretty sure that's not medically endorsed:)  We're human and your mental health is so important so if you have a treat now and then it's a good thing.

    I had a morning nap, an afternoon nap and went to bed at 8 during chemo, add in dexamethasone and it made me a very tired and angry person.  I took it upon myself to tell people off if they weren't obeying spacing rules during covid.  My poor husband.  I apologized pre treatment knowing what it would do to me and of course him:) 

    I avoided the 'poor you' and drama loving people.  I told those that I cared about that I didn't want to talk about cancer and told them why and guess what, it worked!  Most people are sensitive enough to know that talking about cancer brings you to a place you don't want to be when you don't want to be there.

    My biggest inspiration was a friend with stage four lung cancer who kept on building his mega garage, bought a car that he had always wanted and basically just kept on living as if cancer wasn't an issue.   

    You have 86,400 seconds each day, and it's your choice what you do with them.  

    Big hugs.
  • I go to bed at 10-10:30 sleep til 5:30 and up the rest of the time . I find also my patience is a little short also . I also don’t want the poor you either cause it drags me down . I am working on my attitude also not to have self pity and remind myself I can fight and I can win !
  • You got it girl!!
  • @Twilight63 you're getting some great information from the gals on this site who've experienced similar issues as those you've raised.  Do remember though that we all respond to things differently. A solution to a problem that works for one, doesn't necessarily work for another.  But that said, experiment and don't give up. You will eventually find your own ways to help manage some of your issues.  It is harder though while on chemo and everything you're feeling is magnified.  

    I do though urge you to advantage yourself of professional help that is available to you through your cancer centre. I see you've asked about diet.  There should be a nutritionist available to counsel you in that regard. I used one and was surprised to find that for my situation a low fibre diet, not high, was the best. That solved a number of digestive issues I was facing.  Anxiety?  I had a referral to one of our social workers and she's been amazing support through the four years I've been on this journey. I will admit, I waited too long to ask for that help. I didn't until I was out of frontline treatment.  In retrospect I wish now I that I had asked for those referrals right from the outset.  

    Wishing you well on your second chemo.  Before you know it it will be over and through the course you'll find, like most of us, that you're far more resilient and strong than you ever thought you were.
     <3 
  • thank you 
  • Hi , I spoke to my doctor today and she said she won’t give me taxol because I reacted to it and she thinks it will happen every time . Then she told me I only have to do the three months because they don’t think the last three make a difference and mine was caught so early . I am very happy about that but also nervous about not taking the last three just looking for thoughts from you ladies . My second treatment is tomorrow , thanks in advance any input would be appreciated . I will be taking carboplactin
  • Hello: I’d like to introduce myself. I was diagnosed with stage 2 OCCC in September 2020. You could have knocked me over with a feather!  I was 49, very healthy and quite fit, but I guess cancer doesn’t care. I had surgery to remove both ovaries and my uterus. I also had 6 rounds of chemo. I’ve had two CT scans, one after the third round of chemo and one after the last round. Both showed no evidence of disease. I’m currently waiting for a follow up appointment to decide if we do any other treatments. I’m very happy that my eyelashes and eyebrows are starting to come back in!  Losing my hair didn’t really bother me, but I feel pretty awkward with no eyebrows! Other than the fear after my initial diagnosis, now is the scariest time for me. I hope feeling like a ticking time bomb eases with time. I’ve found this site very helpful and I want to thank everyone for sharing their stories. 
  • Hi , I spoke to my doctor today and she said she won’t give me taxol because I reacted to it and she thinks it will happen every time . Then she told me I only have to do the three months because they don’t think the last three make a difference and mine was caught so early . I am very happy about that but also nervous about not taking the last three just looking for thoughts from you ladies . My second treatment is tomorrow , thanks in advance any input would be appreciated . I will be taking carboplactin

    @Twilight63  Good luck today at your second treatment.   We are all thinking of you.
  • @Pinksunrise welcome. So glad you found us and so glad you're getting value and comfort from the stories and discussions.

    Sorry you've joined the community of cancer survivors...something none of us ever wanted but so glad we're all here to support each other.  Wonderful though you were only at stage 2 when diagnosed and your frontline treatment has been so successful. High hopes you stay NED now but we all understand your anxiety about the future.  Fear of recurrence is one of the top issues for OVC survivors and managing the anxiety around it can be difficult.  You'll see lots of suggestions form our community on that topic.  Wait for your followup and see what your oncologist has in mind moving forward.  At the very least, expect and if not offered, a structured follow up plan.....generally that consists of a check in every 4 months or so the first year with blood work.  Some oncologists automatically schedule a CA 125 in that but ask for it.  It will help put your mind at ease, even though the test can be somewhat unreliable.  And ask her what symptoms she thinks you should focus on that might mean you should check in earlier with your oncology team...that might save you from worrying about every little twinge you feel.  

    You are a young survivor at 49 so you might want to connect with your Young Survivor group.  There is a discussion thread titled Young Survivors, or private message @jiselle16 I believe they are also trying to set up a recurring Zoom group for young survivors, outside of the OVdialogue function.  She can also steer to you who to contact if you're interested in joining it. 

    And feel free to join our live chats any time you feel the need to connect real-time. We hold those on Thursdays at 1pm EST. Just sign in and click on the Discussion title: Teal Thursdays......to enter the chat and participate.  Love to see you there.

    Good luck....wishing you a lifetime of NED....hope you'll reach out when you feel the need or have something you wish to contribute to support another member.  
  • @Twilight63, will you be getting 3 chemo treatments in total?   I had 6 treatments of Carbo/Taxol, 3 weeks apart.   When it came to #4 and #5, I was very tired for about 5 days afterwards. For chemo#6, I was absolutely exhausted, especially on the fifth day. 
    I was given pills for nausea.  The idea is that you take a pill at the very first hint of nausea, so that's what I did and that worked. 
  • They are giving 3 treatments total first one was carbo/taxol and now just carbo cause I had a reaction 
  • Don’t know if I should say I want more only thing is mine was caught very early with no ned
  • I have been so stressed which I’m sure everyone is but I’m not sure if that is why they changed it to 3 and I had a rash all over body so that is why they cut out the taxol . Just not sure what to think
  • Forgot to say I had a ct scan a month after surgery and it showed ned
  • My treatment went well . Dietician came gave more info and the pharmicist
  • Elsie13Elsie13
    edited February 25
    Were you thinking of asking about 3 more treatments of just the carbo?  No harm in asking, right?  You might feel better knowing the oncologist's reasoning, @Twilight63 .
  • Yes about the three more treatments since I Amy not getting the taxol
  • Yes that was what I was thinking just need to know the reasoning . It bothers me also that I can’t have an one on one visit face to face . 
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