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

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Comments

  • nadiaC
    nadiaC Legacy
    @kastoyles thank you for the encouragement. I’m a bit overcome by nerves today so it was helpful to get your message. I’m going to pack my treatment bag this afternoon and the water bottle is going in ❤️
  • @kastoyles   Yes Juravinski.  Today went well.  Bloodwork passed so on to round two tomorrow!  
  • @katie666 best wishes for round two.
    I introduced myself a few days ago, and am wondering if anyone can offer some words of encouragement. I have stage 3A clear cell ovarian carcinoma. I am scheduled for Carboplatin and Paclitaxel every 3 weeks for 6 cycles. I have completed 2 cycles but the third one has to be postponed as my neutrophils dropped to 0.4. Also struggling with symptoms of peripheral neuropathy. I am wondering if I made the right decision to do chemo, considering that it often is not very effective for clear cell carcinoma in ad anced stages....
  • I have recurrent ovarian cancer, chemo is on Friday.  It’s a different drug now as this is third go round.  I had to have an illeostomy 6 weeks ago as the cancer blocked my small intestine.  I’m not looking forward to chemo, it kicks my butt every time but what are the options?  Need to stay positive and tell cancer to take a hike
  • jnrichmond
    edited July 2020
    @cbot Welcome  to the group that we all wish we didn’t belong to. I don’t have the same
    type of cancer as you do so I am not versed of the efficacy of chemo for your type of cancer.  I have Stage 1c serous ovarian cancer and did carboplatin and paclitaxol for 6 rounds. Like you, I started with neuropathy after my 2nd round. I discussed doing ice therapy on my hands and feet with my oncologist and he agreed it would be worth a try. The chemo suite I attended had the mittens and booties and I wore them during the paclitaxol infusion. Any neuropathy that had started pretty much dissipated after wearing them the first time. I continued to wear them for each infusion. I only had mild tingling in the ends of my fingers and toes and it completely went away after about a month after I finished chemo. My oncologist was so impressed with the results that he was going to start ordering for all his patients. So for me it worked well. I know for me on day 5 of each round I told my husband I didn’t want to continue. He told me I could do it and the next day I was ready to tackle the next
    round. It is hard no doubt about it. The question of continuing chemo is one that you will need to decide along with your oncologist. I’m sorry I can’t help you more but hopefully someone else on this group can chime in. I wish you the best of luck going forward.  
  • @cbot..I would say have an honest talk with your oncology team about how your feeling and the side effects your having..maybe they can adjust the dosages of chemo they are giving you or adjust the treatment altogether...they're usually pretty good at working with the patients..have your team refer you to the occupational therapists at your centre.  They deal with alot of neuropathy...maybe they can help you....as far as clear cell carcinoma goes I dont know as I had stage 3c high serous ca...use the team and all the resources that your cancer centre can provide...even the Psycology dept...I used them all to get through my treatment...dont get disheartened and lose hope...
  • Thankyou @jnrichmond and @bluebird. Good practical tips as well as emotional support. It helps! Will keep you posted.
  • @cbot we are here to listen and support you in whatever decisions you will make now or along in your journey...😊
  • @love2run good luck with your chemo on friday...
  • Hi @nadiaC..did you have your treatment today?  How did it go for you?  
  • nadiaC
    nadiaC Legacy
    Hi @Bluebird! I did have my first treatment today and it was all very smooth. The nurses were amazing. Not only on top of things but also really helpful towards each other. The room was spacious and bright. My husband was allowed to be there this time which was nice. The Benadryl made me really loopy and then really tired, so I didn’t do much other than lie back with my eyes closer and ear plugs stuffed in my ears. Overall it was a long day but quite smooth. I’m hope the coming days will be manageable too. I feel a bit bloated right now but otherwise more ‘normal’ than I’ve felt in weeks (which no doubt is the steroids). I am glad treatment rooms are somewhat communal. It gave me strength to see others managing their treatments and to be with them. Thanks so much for asking about today! I hope you’re doing well! 
  • Hi @Camper62..I may be late in this game as I saw your comment from Dec2019.just now..I hope your still browsing the site.  I hope you are doing well...your story is very similar..  your feelings stir up many emotions that I went through and still going through..I wonder how you are doing now?  I wonder did the chemo work for you and are you in remission?  And are back to work?  Is everything back to "normal" for you? This has been a life changer for me in many ways.  I seem to have side effects from the chemo when others I knew had none.  I was 20 months off work, during that time rehabbed my body, my mind, my soul for a year and made it back to work..that was my goal..it was hard work..I have a "new norm"..I have limitations, I have a new job because of that..i have a different life..i can say that because i went through lots of counseling to learn to be kind to myself and accept myself...do i feel sad, scared.upset, angry...for sure..its ok..we as cancer patients have lots of unknowns..its hard to plan in the future..(Covid has killed part of my bucketlist with the no travel thing)  I have learned to be flexible, I have quality.  I have ability.  We have strength we are survivors.
  • Hi @nadiaC..I'm so glad your first treatment went well..and everyone was helpful...and so far so good..that makes your experience so much nicer and memorable...if you start having any symptoms that are not manageable for you...phone your hotline cancer emergency number they gave you and/or for sure let your oncology team know...especially if you start having fevers etc...not to scare you but to prepare you...I'm glad your first cycle went well..😊
  • nadiaC
    nadiaC Legacy
    Hi @Bluebird. Thank you for the advice. They told me to go to the ER if I spiked a fever or had unmanageable symptoms. No oncology hotline but I do have the number for the oncology team to let them know. Taking deep breaths and hoping the coming days are manageable :) 
  • @nadiaC...I hope everything goes well for you too.  Sending positive thoughts your way😊
  • @nadiaC You made it through your first treatment!  YAY! Emotionally, for me, it was the hardest because I just didn't know what to expect. Physically, as you progress, the side effects get a little stronger each time - but, for me, they were still manageable. I found sleeping at night to be a problem. I'd wake up for a few hours and then fall back to sleep. Thank God for my Ipad! LOL and Pearl's Perils. I always had a nap, usually in the morning and sometimes in the afternoon too. You'll be a Warrior Queen and barrel on through!
  • @kattie666 - We lived in Brantford at the time, so we had a little drive to get there, but were glad to be close enough to Juravinski. My doctor will be retiring around the same time I reach the five-year mark. God-willing I never have to set foot in the cancer center after that! The staff were all wonderful and attentive and caring, but it was nice to ring the bell after my last treatment and say good-bye to the chemo suite!
  • @kastoyles w live in Cambridge.  Juravinski is great so far.  Had 2nd infusion on Thursday.  Things are going well,  tired but feeling ok. It appeared that they have started some renovations in the chemo suite,  Registration has been moved to the hall just off the elevator.  #2 down 4 to go!!  
  • @kattie666 That's the attitude!
  • @kattie666...happy to hear your 2nd treatment went well..
  • nadiaC
    nadiaC Legacy
    @kattie666 glad to hear that your second treatment was good! Bravo! You got this!
  • nadiaC
    nadiaC Legacy
    Thank you @kastoyles! My sleep has also been a bit messed up. No sleep last night but probably because of the steroids. I’m also in surgically induced menopause, and hot flashes may be setting in. I wonder if anyone has tips about hormone replacement in this situation. My doctor suggested it but I’m worried about it’s effects on tumblr growth. I’m going to search the posts and start a new discussion topic if there isn’t one already. 
  • Good idea. I was well into menopause when diagnosed. Never went the hormone route and coped quite well. My husband might say otherwise... LOL  had lots of hot flashes though, still do. You might find a thread on hormones, @nadiaC . Enter it into the search box and see what come up.
  • CountryLiving
    CountryLiving Peer Support Vol
    Hello @kattie666! I was diagnosed with cancer during my surgery in December 2019. I finished my chemo in March. I am new to this group as well. Glad to know your chemo has gone well. It does seem that tears do run many days but they will stop. I have been married for 36 years to a wonderful man who is my rock. Glad to hear you have the same support. I live just east of Cambridge in a small community. Amazing how close we are. Perhaps when covid restrictions are better we can meet up. The ladies in this group are fantastic and helped me in my journey.There is also a good supportive centre called Hopespring Cancer Support Centre that supports the  Waterloo/Kitchener/Cambridge area that may interest you. Wishing you continued success through your treatments.
  • Hello everyone. Thank you for all of your helpful comments. I am fairly new to this online forum. Are the Teal Tuesday online chats still running? If so, what is the procedure for logging on? Thanks in advance!
  • CountryLiving
    CountryLiving Peer Support Vol
    Hi @cbot. I was diagnosed with cancer during surgery in December 2019 and then had chemo that ended this March. I understand your questioning your decisions. I too questioned whether I could go on after each session. I was hypersensitive and anapylactic to my chemo. I had major side effects and was in much pain. Long talks with my oncologist and family helped me. Extra drugs during infusion helped. The team made adjustments that helped every session. Ice on my feet at home when they ached, warm pad on my arm during infusion, and pain meds when needed. I am so glad now that I did endure. Ultimately the choice is yours and there is support no matter what you choose. We teal sisters have all had these hard decisions to make. I hope your chemo last week went well. You have made it through 3 sessions... well done! Know we are here to support you on your journey.
  • @countryliving Thank you so much for the information.  I have quickly checked out Hopespring on line and will likely be looking into the support groups.  Feels a little lonely not being out and about at all.  I hope your recovery is going well.  
  • CountryLiving
    CountryLiving Peer Support Vol
    Hi @nadiac. I just finished my chemo sessions in March. I do know how nervous I was and understand your emotions. Hope your first session went well. Emotionally it is hard because you dont know what exactly will happen. Personally the first session was the hardest for me and I had the greatest side effects. After I knew what to expect and was better prepared. Each session got better. The last one was the best! All excellent nurses every time. Talk to them with concerns as they are very knowledgeable. The group here will support you on your journey. 
  • Thank you @countryliving! I actually had to postpone last week's chemo due to low neutrophils so I'm still not quite halfway. Waiting on bloodwork results to see if I can go for my third one this Thursday..