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@HorseGirl I have also been wondering about @Strongwoman . I hope she is just busy, enjoying the holidays with her family.
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Hi @JoanEG I'm sending positive vibes your way for nothing but good news. I understand the anxiety completely. Even 4 months into my Lynparza (Olaparib) I have terrible abdominal cramps. I saw my oncologist in late December and she did an internal exam. She said she wasn't worried at all (my CA-125 was 21 which is pretty much in my average zone). I hadn't had a CT scan since July so she put a req in for one. Sadly that isn't scheduled until late March (they are trying to get it moved up but PMH is down one scanner). I try to stay calm based on her assessment however it's unnerving.
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@Alwayslearning thanks for the well wishes. I’m sorry to hear you still have abdominal pain. I also take Lynparza but fortunately have had no adverse effects. I think we are all in agreement that every ache or pain brings a sense of worry! I hope your scan gets moved up so your mind will be put at ease sooner rather than later!
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@JoanEG I’m glad you are trouble free on Lynparza!! That gives me hope. Other than the abdominal pain (which approximately 40% experience- lucky me), I’ve also been good on it. 🤞
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@JoanEG fingers crossed for good scan results. Like many of us have mentioned I think the fear of the floor falling out from under us is strong. I can 100% relate to what you said, the stronger you feel the more nerve-wracking it can be. Especially the further we get from front line treatment.
@HorseGirl I've been feeling very well for a long time. I do have what seems like chemo induced arthritic pain and hot flashes from induced menopause, might finally ask me MD to give me some hormones. I've been working 3 days a week since July and started lifting weights a while back. I'm learning to live with all the little mild discomforts. And everytime I have a scan and nothing is seen I put that worry to the back of my mind.
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@melissa lifting weights sounds like a great idea. How does that make you feel overall? I had early onset menopause in my early 40s, so I’ve been living with menopause effects for years. I’ll be 60 this month! The arthritis is likely age-related on this end, but I definitely experienced more joint pain overall when I was in front-line chemo (Sept-Dec 2023), and Bevacizumab (Sept 2023-July 2024). Putting worry to the back of one’s mind is the best thing one can do to be in the moment, right here, right now. Easier said than done some days. This time last year, I felt like I’d been dragged over 10 miles of bad road, but now I’m doing okay. Have to be careful not to lift too much in the barn due to several small hernias left along my incision line from the debulking surgery. The occasional cramps spook me at times, but that’s not something I can control, so I try to just keep doing what I can.
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Hi @jmbarrhaven … we have not connected before however I was going back through the forum site and saw your post. It piqued my interest as I've been having lots of odd abdominal pains which my oncologist is not worried. My surgery was Feb '24 however I'm told it takes up to a year for everything to settle into it's new place. I think I may seek out an osteopath and/or physiotherapist…one that deals with cancer patients (I know you can search for them online). Thank you for your post. Once again this forum proves how helpful it is! I hope you are well.
Alwayslearning
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@Alwayslearning @melissa @HorseGirl just had a call from my GP. Scan looks great! Bowel obstruction has shrunk and no sign of any new disease. I’m so thankful she always comes through with my results right away,
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@JoanEG I LOVE THIS NEWS!! That is awesome. Thank you for sharing. I was thinking of you today as I was going back through the site and had noted you were likely getting your results soon. A great way to start the new year.
Alwayslearning
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@Alwayslearning So glad you found the information useful. That was certainly the intent. All of those old pains are now resolved. I have new pains she is treating, but what else is new!!
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@Alwayslearning I actually typed this out on Friday and forgot to hit the post button! LOL
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@HorseGirl sorry for the late reply. So far I enjoy lifting light weights. I use 10 pound dumbbells and also the machines. I'm still going easy with them cause like you, the saw a small fat containing umbilical hernia. Most likely from my surgery as I have one of my small incisions there. My dr didn't even mention it when I saw her in November but I will bring it up next visit. So I'm trying not to work my core too hard.
The main benefit I get is increased energy and improved mood!! @JoanEG that is fantastic news!!!
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@melissa im glad to hear the weight training is having a positive impact. I’m going to start the Well-fit program at the university of Waterloo in February and look forward to similar benefits.
I had to come off of Zejula for a week while I was on antibiotics for pneumonia but thankfully that has cleared up. My next CT scan is on Wednesday and I’m feeling the anxiety we all do each time. Fingers crossed.
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@HorseGirl
I’m feeling really well actually and just had another CT scan on Friday so I’m hoping my oncologist will review the results at our meeting tomorrow. Mobility is fairly normal, with a bit of dizziness thrown in! I’m on some really good meds for nausea which has made a huge difference! Thanks 🙏 How are you feeling?
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@Strongwoman missing you honey. How are you feeling? Sending love and prayers 🙏💕🙏
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thinking of you as well @Strongwoman and I hope you are okay. I also want to thank you for all of your advice and responses here on this site. You have been a role model in so many ways and I hope you know how much you have helped us all. Sending prayers for you 🙏❤️🙏❤️
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@Sandi6 I'm glad to hear you are feeling better. Sending you nothing but positive vibes for your upcoming CT scan results review. Also glad the anti-nausea meds are helping. Thinking of you.
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Hi @GloHo I'm just checking in. I apologize if you've posted since this last post and I missed it. I wanted to see how you are doing and how the trial is going. Also did you get the allergy testing done? I'm hoping you've had that positive momentum going!
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Geez…it has been awhile since I’ve been on Teal…but I have kept my clinical trial notes updated 😊.
I just finished Cycle 6…the final treatment for my trial.
Emotional on some levels since the treatment has decreased my CA125 by 90% and my tumours, according to last scan, by 23%. I have another CT this Friday, so we’ll see what’s happening.
I had some issues with reactions to Carbo but the allergy test was negative. So we went with increased dosing of pre-meds and longer infusion time for Carbo for my last dose. Good grief…I had every conceivable side effect you could get!! I am just getting back to normal but still a bit weak and tired.
Next will be to meet with my Onc, review bloodwork and scan and decide what will be best for me moving forward…another trial or one of my last two standard of care options. Fingers crossed there is something that can hold me stable for a while!!1 -
Hi @GloHo. Congratulations on finishing the final trial treatment. I have not doubt it was bittersweet however it sounds like you have some very good results. Sorry to hear about the Carbo reaction issues. I understand the pre-dosing meds and longer infusion time. I had that every time during the Pac portion of my treatment due to a reaction. My treatments were always at least 6 hours long. I hope you gain more strength each day but be kind to yourself as you recover.
My fingers are definitely crossed for positive results from your upcoming CT scan and a solid next step plan. Thank you for posting an update. I was thinking of you. Let us know how you are doing in the coming weeks.💙
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Good afternoon ladies. I had an appointment with my oncologist on Monday and based on my recent bloodwork and CT scan I only have to go for bloodwork every 2 months instead of every 2 weeks, I only need an appointment with her every 2 months instead of monthly and my next CT scan will be in 6 months instead of 3.
Thank you @Alwayslearning for reaching out and connecting with so many of us lately. We seem to have lost touch with each other over the busy holiday season. I am really missing @Strongwoman she was the glue that held us together and I appreciate your efforts to fill that gap. I will not speculate on her absence but I must admit I am fearful.Please take care everyone and remember just because we have been given a cactus, doesn’t mean we have to sit on it!
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@HorseGirl that has been my mantra throughout this journey.
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@JoanEG I'm glad you're results were as positive as they were that allows for less frequent labs/scans... Hopefully that will translate into less a anxiety.
Like you mentioned about @Strongwoman her dedication to this group is award worthy. I couldn't do what she does and like you, I won't speculate as to what her absence means. She is one of a kind.
The past 3 days have been very stressful on me. My brother attempted to take his own life.. so I have been dealing with this. Mixed feelings as I think about all of us ladies on a journey to fight for our lives how someone can do that.
I called a mental health hotline and spoke to the for over 30 mins and I feel better since doing so. My brother is very very complicated to say the least. The type of person that refuses 99% of help offered to him. I wasn't able to go to work today because I couldn't fall asleep last night until 430 am. The hubby is upset as he sees this as my brother being selfish, and not concerned for my well-being as someone in remission... Fingers crossed it stays that way for a very. Long. Time..
I guess I just needed to say that. That you to those who read my rant.
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@melissa I’m so sorry about your brother. I understand how much conflicting emotions must come into play in this situation. It’s so difficult when someone we care about refuses help. You did the right thing by reaching out to the mental health hotline and I’m glad you fell better after speaking to someone. Sending you strength and a big hug.
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@JoanEG I have also been wondering about @Strongwoman. No matter what, she would want us to stay active in this group and continue to support each other. @Strongwoman reached out to me in July 2023 when I first was diagnosed and prior to debulking surgery followed by chemotherapy. What an amazing support she was for me. I’ve been trying to find out the name of a book on end of life that she recommended. Anyone? Here is a screenshot of a post that she made in 2024.
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@melissa I feel for you! As a mom of a son who has struggled with psychosis and addiction issues, believe me when I say that I can relate to stress caused by the actions of a family member. He also refuses to accept help. You will find a way to cope, but it is heartbreaking to watch the people we love self-destruct. I hope that you are able to find a way forward through this difficult time, and don’t lose sight of what’s best for you.
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