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Looks so inviting!
Enjoy your trip!
@alwayslearning
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@Alwayslearning have a fabulous time!
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@Strongwoman thank you!
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@Alwayslearning I’m sooooo jealous. You look fabulous, darling! Enjoy!!
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Good Morning Ladies!
I am posting early today before our Teal Thursday chat as I don't know where I will be at when it arrives. My youngest son is currently at the courthouse waiting to do his due diligence in either becoming or not becoming a jury member. So, we have no idea how long that will take and when he will be finished.
The other part to that is that I committed to helping a friend who is in Hospice create something for her son and hubby today (if she is still up to it), She is unable to do this on her own and is a way I can give back and help her leave something for her loved ones. I don't know how long I will be there with her either as I am not going until around 10:30am and will go from there. It is the least I can do to help her out. We will see where she is at today and hopefully it is a good place so we can get it started for her. :)
Lastly, I have been off/on the site lately as I tend to my own bowel issues again, Nothing new, Same ol same ol issues, Hopefully today is a better day, Today I got some laundry out on the line so that is a start of feeling good again. These issues present themselves when they want and how they want and I have no control. I had some good food yesterday at my group session but then was full and could not eat dinner. That is ok too, Maybe not as much food today and we will see what happens.
So by all means, if I am not on at 1pm, please continue or start chatting. I will hop on when I can and participate. I unfortunately can't split myself in two so one of them has to give, The chat wins because I can always catch up from it. Time with my friend, well, we don't know how much longer, She has been there 9 wks now going on 10 wks, Time is a prescious thing and I value it vey much especially at times like these. I hope you all understand,
Take care. Enjoy the sunshine and warm air,
Strongwmn
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@Strongwoman you are so right. Time is precious, and I have been making the most of my strength finally returning to start riding more vigorously. I know that this won’t always be the case, so for now, I’m getting going. My horse is big and she was feeling pretty UP yesterday. I was a bit nervous about this, because it’s a long way to the ground. My leg strength and core muscles are nowhere near where they need to be to ride really well, but I hung on and did it anyhow. Here are a few pictures of our off-property adventures from yesterday and today.
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Good afternoon everyone. @Strongwoman I’m glad you are feeling better and you continue to amaze me in the way you get so much done both for yourself and for others! You are a rockstar!
@HorseGirl you are making great progress! Your horse is a gorgeous looking beast. Enjoy your ride
As for me not much to report. I’m feeling good, gaining weight and doing the things I love to do. My sisters and I spent the weekend on a scrapbooking retreat. It is the way we have celebrated my birthday for the past eight years. I also hit a milestone, I got my first, post chemo, full haircut! Here’s a photo of me and my sisters on our weekend retreat. I’m the old one with gray hair, lol. My sisters are 9 and 10 years younger.
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Hello @Strongwoman , @HorseGirl and @JoanEG
Sorry all. I never seem to be able to make the 1pm timeslot as it seems I always have appointments on Thursday.
As has already been said, you continue to amaze and impress @Strongwoman. Time is indeed precious. That's for the reminder.
I need to admit @HorseGirl that I have never been on a horse. Your horses are beautiful. I'm glad for your continued strength. I agree that the body isn't as it used to be. I'm still trying to get back to my gym routine. I'll get there.
@JoanEG your "sister" weekend sounds like fun. Glad to hear you are doing well and gaining weight. I think I gained weight the entire time post my surgery and through my chemo. The oncologist thought it was due to all the steroids I was taking but that's not an excuse now! My weight is starting to stabilize but I'm definitely a good 8-10 pounds heavier. Maybe that's a good thing.
I just returned from our 10 days in Aruba. It was an amazing time with our best friends. We rented an Airbnb so didn't have to deal with resort/hotel crowds. We ate dinners out and all but one restaurant was open air which was great. My hubby definitely needed the break. He has been a tremendous support and caregiver for me. I've attached a photo from our sunset cruise.
My next milestone is in a few weeks…bloodwork and PARB clinic appointment at PMH. I'm hoping all my levels continue to be good as we plan to head to Florida (we are snowbirds) mid November. I'm committed to returning for all appointments so will be back/forth. My parents are American and live in Florida full-time. I haven't seen them since late January when the "shit hit the fan" with my surprise cancer diagnosis. They are in their late 80's and cannot travel easily so we've been FaceTiming over the past months. I am DEFINITELY looking forward to seeing (hugging) them again.
That's about it for me. Stay well everyone.
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@Alwayslearning it sounds like you had a much needed get away in Aruba! The photo is lively, you look great! You mentioned the weight gain thing, I lost over 30 pounds between when I was diagnosed September 2023 and my final round of chemo May 2924. I am thankful I had some extra weight to lose and I’m happy to have put some back on. I’m now within 5 pounds if my weight goal! I’m very happy for you that you will be able to go hug your parents soon!
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@Strongwoman Glad to hear you have been managing your bowel issues. I’m sure it is quite scary for you. How do you do it all?!! You are truly amazing!! @HorseGirl So glad to hear you were able to get back in the saddle. I’m sure you must have been missing riding tremendously. Your horse looks magnificent!. @JoanEG Happy Birthday 🥳. You look great! So glad to hear that you are doing well and making the most of it. @Alwayslearning Your vacation sounds wonderful! Sending positive vibes that your counts remain stable so you can get to Florida to give your parents a huge hug and spend time with them.
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As for me…my Cycle 3 has been delayed a week due to low neutrophils. No chairs available in chemo for next week so I’m on a wait list and hope to hear by end of week. Hoping my neutrophils are up enough to get treatment next week!
I am feeling well. My appetite is very good (but not gaining weight yet!). My energy level is pretty good. I don’t have any symptoms or side effects. Always a bit of fatigue…I think I am just learning to live with it.
My chest scan is stable - no new progression and no pleural effusion. My abdomen/pelvis scan reports stability with decreased ascites. My biopsy pathology reports dead tumour tissue (background necrosis suggestive of treatment effect). My CA125 decreased again (-1350). My count is still very, very high but I’ll take all the positives I’m getting right now. It’s been so long since I’ve had some positive news…feels good and has lifted my spirits.
Now, we just need to get these neutrophils UP. There is no wiggle room in this trial and they must be at a certain level to get treatment. Not sure if they will delay again or offer the injections if they don’t come up as needed. I was expecting a drop in neutrophils and platelets…just not this soon - at least my platelets seem to be ok still so one less thing to worry about.
Happy Halloween 💀👻🎃
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@GloHo I had a persistent neutrophils challenge through my chemo. I was delayed on my 2nd infusion by a week because of it and then had to self inject with Lapelga for my last three infusions. I hope it will be an option for you.
I was also told that laughter and music (so mood) can positively impact neutrophils. I don’t have scientific facts to support that however a few days before my bloodwork I spent a joyful day with my granddaughter. My neutrophils naturally went from 1.8 to 3.7. Sometimes laughter is the best medicine.
I hope you get the boost you need!
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@Alwayslearning Thanks. Even though I experienced neutrophil issues previously, I was never on the injections. I keep hearing about them. So, maybe that will be my resolution. Will find out next week if I get a chemo chair!!
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@GloHo my fingers are crossed for you.
If it becomes an option, I know there is info on the site about Lapelga injections as I sought input when I had to do them. Having said that post any questions you have as there’s always new info/users who may be able to weigh in.
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@Alwayslearning Thanks. I’ll definitely check out the site before my next appointment!!
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@Alwayslearning Forgot to mention…after the one week delay, my neutrophils landed in the normal range!! So, was able to do infusion yesterday!
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@GloHo that’s great!! 👏👏
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Hey Ladies.
It's that time again. Who is out there and who wants to chat today?
I have been struggling with the time change and have been more fatigued than normal. Needing to nap etc. Anyone else affected this way?
So how are you in general?
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hi this is the first time I’ve made it ( although I’m late). Seeing my oncologist tomorrow to review my first post chemo scan. Any questions I should ask?
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Hi @Strongwoman
Well, I have good news…something I haven’t enjoyed being able to share for quite some time now!!
My lung and pelvic CTs show stable - no new disease! My biopsy reported dead tumour tissue! MyB12 is up to normal and I am continuing the supplement to try to get it up some more. My neutrophils climbed back up to normal after a one week delay allowing me to receive treatment yesterday! Best of all…my CA125 dropped by 6000!!! This is over a 50% decrease after Cycle 2!! And it brings my CA125 to the level that I was at in February! My CA125 was/is VERY HIGH so I am nowhere near normal but these reports are amazing and have certainly lifted my spirits!
However…I had a reaction to Carbo yesterday! Nausea and diarrhea! I also had face/neck flushing which is normal for me with Dex…not sure if Carbo made it worse. I have normal face flush today. Treatment was stopped. Unfortunately, they still have me on Benadryl, so I was quite out of it when all this was going on and did not ask a lot of questions which I normally would! I hate it!
The Drs are aware of my reaction and will discuss the move forward at my next appointment in three weeks. In the meantime, they have referred me to an allergy clinic at St Mike’s to run a Carbo test.
This was my 20th infusion of Carbo and, apparently, reactions are not uncommon when one has had MANY infusions 😁. I have, of course, researched options to overcome this sensitivity but the wrinkle is that it is a trial and I don’t know what will be allowed. So I wait to hear what my options are…encouraged to hear there are options…just hope I like them 🤣🤣.
Overall, I am still feeling well. Just have to get through my week after treatment stuff (fatigue, heavy legs, low energy, etc.), then I’ll be back to myself. I always allow a week of not demanding too much of myself after treatment. But, after four days, I start getting antsy and asking myself why I’m not better…then have to remind myself that it has not been a week yet 😵💫.
So…I wait.
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@GloHo That is good news! So happy for you. The reaction is not great but it sounds like they are on it. Yes, it is hard to remind ourselves of time and how much has passed. The week will pass before you know it. Sounds like you will have options coming up too which is promising. All and all some good news after such a long journey for you.
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@Strongwoman For sure!! Forgot to mention that I also gained .4 kg. Not a lot, and I really don’t want to put on much more because I feel good at my current weight. I am near the top of “normal” weight for my height…so not too worried. My appetite has been amazing…I can finish everything I put on my plate and sometimes go back for a few seconds. Learning how to manage low fibre diet…takes some getting used to.
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@GloHo sorry I’m late again. Your news is great!! You take all the positives you can. It’s trending in the right direction so that’s good. Sorry about the carbo reaction. I was told that infusion #7 was typically when folks reacted so they watch you closely then (was told that by chemo nurses at PMH). So if your first reaction is at 20 then you are doing exceptionally well.
I hope the energy continues to return. Don’t fret the weight. Gaining vs losing, I’m told, is a good thing.0 -
@GloHo I’m so happy to read that your CA-125 levels have dropped, and that things are holding steady. After everything that you are going through, I admire your positivity and resilience. It does get super frustrating when one is too tired out from treatment to do much. Sounds like you like to be on go! My chemo gave me heavy legs and extreme fatigue as well. I finished chemo December 2023, and Bevacizumab July 2024–still feel like I’m recovering in terms of shortness of breath at times. Have been pushing myself to ride my horse (exhausted afterwards) and driving mini ponies during these lovely fall days…appreciating and fully living my life in the NOW because the future is uncertain. Heading to the Royal Winter Fair in Toronto tomorrow— bringing a walker that I can use to sit on, as there is a lot of walking and not much seating. Sharing a picture from yesterday at a local conservation area.
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@Strongwoman the time change has fooled my body too…up around 5-5:30 and ready for bed at 7pm. Sorry that you’re feeling tired and hope that you’re holding steady in the meantime. I’ve been thinking about you and been wondering how things are going. Clearly the bowels do what they want, but it sounds like you are taking these challenges in stride as much as you can. How did you make out with helping your friend with her legacy work? A generous and kind gesture on your part—I’m sure it was deeply appreciated. Have you done any shopping for Christmas? This time last year, I had it all done—and felt too exhausted to do much of anything. Presently I have not done a thing for Christmas—trying to enjoy the horses before the weather takes a turn.
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@GloHo perfectly understandable after the ordeal you’ve just been through. I’ve been on the Benadryl loopy ride on a normal dose, so I can just imagine. I’m so pleased that your CA125 responded so well. I hope they are able to keep you in the trial, but I know the criteria can be quite strict. Your journey prompted me to look at trials for my future and I will definitely bring it up today at my appointment.
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@mcb hope that you get good news today at your oncology appointment. CT scan results I presume? I have a follow up in person appointment today with my oncologist since my last Bevacizumab treatment (July 2024), and CT scan in September. Holding steady at NED so far. I wish the same for you today! Please share your results when you are comfortable.
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I didn’t meet the criteria for NED as there are still nodules in the omentum. I had hoped there might be another reason for their existence. The surgeon left the omentum between the stomach and the transverse colon, but removed it below. I’m not sure why that decision was made. They are smaller than before treatment though so that’s good. They won’t do a PET scan to see if they are indeed malignant.
I’ll be getting either olaparib or niraparib, but waiting for a call from the drug access coordinator to go over Trillium funding. That may take another 3 weeks. The long gap without treatment of any kind is a tiny bit terrifying.
My CA125 had fallen into the normal range after the first round of chemo from a post surgery high of only 101 to 7 at the start of round 6. CA15-3 started at 290 and has plateaued at 46 after round 4.
In the meantime, I’ve put a call in to the surgeons office to see what can be done about a seroma that’s causing some abdominal pain. And later today I get the PICC line removed! Small victories.
Feeling a bit deflated and I can’t really explain why I thought the news would be better. Just a lifetime of ADHD “having the toast land jam side up” I guess.0
