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GloHo · February 27

@JoanEG
So glad you figured out the allergy connection. Nice to have immediate care from your GP and able to rule out a cold/infection! Was a good reminder for me to put allergies into the equation should something come up. I always think I have a fever the day after chemo…then I remember I have the Dex face flush 🤣. I also have the weekly Taxol runny nose that throws me off because I’m always blowing my nose and wondering if it something else. So annoying.

GloHo · February 27

Hi all. Talk about confusing!!

My CA125 has been rising since I started weekly Paclitaxel and my recent CT showed quite a bit of progression (no major organs, mild ascites). However, when I finally got my CA125 results from yesterday. the count has gone down. In addition, all the other counts that were off were also improved - not back to normal, but better.

I saw my Onc yesterday but the CA125 results were not yet available so we went ahead with my next steps plan not expecting the decrease in CA125…so didn’t get to discuss it in relation to my scan. I have a call into her to see if we have prematurely made a decision to stop weekly Paclitaxel and move to next steps.

In addition to the two standard of care treatment options I have, there is a Phase 1 clinical trial in Toronto that I may be eligible for. My Onc has initiated the trial process and they can see me for an assessment next Monday. I am just waiting for the trial coordinator to call me with details.

She reiterated her concern about bowel obstructions and stressed that I have to stay on top of that!!

I also got the nerve up to ask her about my prognosis (without the trial in the equation). She said it’s hard to say but without any complications, maybe a year. I wasn’t sure what to expect but that is better than I had been anticipating. So a positive in my book!!

So…waiting to hear if we should consider continuing weekly Paclitaxel or move to the trial. Hope to hear no later than tomorrow.

If I am going to the trial there are some logistics to be worked out…stay at my son’s place…he has two small dogs…we have a larger new puppy - they have never met and we are still trying to train our puppy!!! I am ok with it all but geez it really stresses my husband out!! (He has very little patience…and doesn’t understand the repetitive nature of training a puppy!) So not only am I trying to train a puppy…I’m trying to train my husband to train the puppy 😵‍💫 🤣🤣.

Has anyone else found that it is taking longer for CA125 results to come back? I may have to make an extra trip into London the day before my appt to get the bloodwork done so we have all results at hand for the appt. Will ask my Onc about it.

Strongwoman · February 27

@BellaDonna1959 It can be frustrating for sure. I found a handout I was given when I went through chemo and perhaps it will help you with your situation. I will quote it below:
"An antioxidant is a substance that protects cells from damage caused by free radicals. There is no evidence at this time that antioxidant supplements can reduce cancer risk and some evidence indicates that high dose supplements can increase cancer risk. Radiation treatments and many chemotherapy drugs work to produce free radicals to damage cancer cells. Because of this, we do not recommend taking antioxidant supplements during cancer treatments. Some examples of antioxidants: Vitamins A, C & E; betacarotene, selenium, melatonin, N-acetylcysteine, glutathione, CO-Q-10, alpha-lipoic acid.

While receiving cancer treatment, either radiation or chemotherapy, it is recommended not to take antioxidants. If you normally take large amounts of antioxidant supplements, and if time allows, you should stop 1 week before your cancer treatment stops and continue until one week after your last treatment. "

Although this is probably not the info you were looking for to support you taking them, it is of important note to others out there. I wish you well with your search and kindly let us know if you find any research articles supporting the use of.
As for the IV Vit C treatments, that would be contra-indicated while having chemo as that would be too high of dose as noted above. Have you asked your Naturopathic Oncologist about receiving those treatments or has someone else recommended them? What was their response to that question?

Glad you asked for what you wanted re: treatment and glad to hear it is working thus far. Keep us posted.

Strongwoman · February 27

Thanks @JoanEG, @melissa and @GloHo Waiting is hard. The landlord situation will be what it is and will go with the process at hand. I don't have to like it but it is what it is for now.
@JoanEG I am happy to hear you are resting before your upcoming surgery. Getting ill or feeling like we are getting ill from something else can set off alarm bells in us for sure. I am glad your doctor saw you and took the precautions she did with you. Sounds like a "keeper" on your team.
@melissa I am also happy to hear that you went to the gym instead of waiting by the phone. I agree with @GloHo and feel 2 wks is long enough to call in yourself and ask for your results. Let us know what you end up doing.
@GloHo Yes, it has been a frustrating go for Marianne to get this glitch fixed. She is "on it" is all I can tell you and hoping it is resolved soon. Thank all of you for being patient with this as she gets it sorted out.
We are going vinyl shopping and spending the day there. I just hope he remembers I am not the same and get tired out easily. We will see what the day brings. It's his birthday on Monday so I am hoping to make it a nice day for him in some way. I am also hoping he doesn't want to leave at a ridiculous time in the morning on Saturday. How are things going with you these days?

Strongwoman · February 27

@GloHo Funny enough our messages crossed at the same time! LOL
Odd how the CT scan is differing from your CA 125 levels. As far as wait time for it specifically, no, where I am, bloodwork in general is taking longer. We either have to go in 1 1/2 hrs prior to the appt for all bloodwork minus CA 125 (takes a couple of days) OR go in the day before. I have been opting to go in the day before when I can.
As far as your prognosis, it is scary asking, isn't it? We want to know but we don't want to know. I will be asking again at my next appt and when and if I get to see the surgeon to see what they have to say. Glad you are at peace with what you were informed of re: prognosis. Hard to know what they will say when asked.
Glad your Onc brought up the bowel obstructions and to be aware of them. You know there is more than enough info on this site about it all!
How do you feel about the Phase I trial minus the dog/hubby issue? Yes, I hear you on the hubby thing and understanding the impact certain things have on situations that affects us all. Training them can be exhausting...the hubbies that is, puppies seem to understand or catch on quicker at times.

Weekly Paclitaxol may be something I face at some point in time but only if my bowels are stable. Same goes with changing to Tamoxifen. What stable means in their minds, I have no idea. Other than my setback yesterday, I have been doing okay.
Keep us posted! My thoughts are with you.

melissa · February 27

@GloHo @Strongwoman thanks for the advice. I was starting to feel like a dum dum... Sitting at home... I was like... What am I doing I miss the gym. As for my results, I emailed my doc on Friday but she hasn't gotten back to me. I'm going to call the office tomorrow

Keepcalmandbreath · February 28

Hello @BellaDonna1959 - I was taking a lot of supplements, including anti-oxidants, but my naturopath doctor stopped them all as soon as I went back on chemo.

BellaDonna1959 · February 28

So confusing =- read this today that tends to support high dose vit c i.v in conjunction with chemotherapy. Lots of studies are cited - but more is to be done to be clearer on the recommendations as usual. You can see it here. https://jeccr.biomedcentral.com/articles/10.1186/s13046-021-02134-y
I will be speaking to the naturopath at the IV clinic today to discuss if it will help or hurt me. Thanks for the input.

Strongwoman · February 29

Thank you for sharing @BellaDonna1959 The information is interesting. I would stress that although there is some promising information in studies currently with this, some are still in Phase I or II (could be different now as article was 2021). The article also stated that kidney issues would exclude some from receiving the IV Vit C as well as some other conditions. It would be pertinent to be transparent with your team and Oncologist about what you are doing outside of conventional/standard of care treatment to ensure the safety of any supplements/treatments not being administered by your team for your own safety. It is great you are speaking with your Naturopath regarding it and I would urge you to discuss it with your team/Oncologist after that discussion as well. I wish you better days ahead due to decreasing your frequency of treatment and thank you for sharing the interesting article. Science and research is being done on an ongoing basis and who knows what that breakthrough might be for Ovarian Cancer in the future.
Take care of you.

Strongwoman · February 29

Happy Leap Year Day Everyone!
I found the above and thought it fitting to what we all go through with this disease and our own journeys.
We fear a lot in our process....the unknown, the known, the what ifs, the whys, what's next and why now.
As we start our journey we have difficulty sorting through all of this and the rationalized mind can't handle it all at once. As we wade through our journeys and slowly process what is at hand for each of us as individuals and our individual situations, we can start to see that river and why we as the poem suggests "don't disappear but become the ocean". We find supports sometimes where we never thought they would appear and find others totally disappear. We soul search and dig deep to get through our journeys and find solace in others to help us through our process as we heal inside and out. For our journeys are not solely about our disease, it is who become in the face of it. Not all days are good but nor are all of them bad. We learn to find joy in little things again and peace within ourselves and with others. It doesn't all come at once, it's a process that is unique to each and everyone of us. Common threads and uncommon weaving together to become our story that will live on long past our own lives to be passed down from generation to generation. Question is, have you begun? part way through your journey? or At the end?
What is your Legacy?

How is everyone doing today? I feel insightful this morning as I wrote what I had to say for today's meeting. I am here. You are there. What is it that is on your mind that you would like to share, vent or discuss today?

JoanEG · February 29

Good morning everyone. @Strongwoman your posts are always so insightful. As I wind my way towards the ocean the support and camaraderie I have found here have made my journey so much easier to navigate. With my last round of chemo behind me, today I have a CT scan accompanied scanxiety. For some reason the question “what is your legacy” scares me. Maybe because I haven’t figured it out yet but I will. I am currently working on my “branch” of a family tree that goes back eight generations maybe that’s it. Hmmmm

Strongwoman · February 29

@JoanEG Can you pinpoint what is causing your scanxiety? Or is it more generalized? Your surgery is upcoming as well, does that come into play with this?
That question can scare many. Our legacies vary and can start with simple tasks we have always wanted to complete. Take for example your family tree. That is a form of legacy work. I recall beginning by painting pottery and it was a light bulb went off and I thought, why not give this to that person, etc. When I would go into the store, pieces would "speak" to me and I would realize it would be perfect for this person or that person. From there, I kept painting. The other one I began was a recipe book for my boys. My Aunt and my Mom had done one for them and I wanted to do one with the "newer" things I had made and include little notes beside the recipes and possibly some photos of what I had made previously as a forever memory for them. I am still working on things. If you are wanting to do Legacy work, starting small and simple is best. Like photos we all have on our phones. My next project is getting them off of there and making photo books for the appropriate people. It is a big project if I think of it too much but I do my best to think small or focus on only one person at a time to begin. Most of the time, I don't think of them as Legacy projects per se but projects I have always wanted to do. Instead of the question I posed think of what are those things I have always wanted to get done. Make a list. Have a couple on the go at the same time so you can bounce between activities. I find I bounce between things often and when I wake up that day, depends on what I am working on.
I think you are doing amazing work! Eight generation back, how amazing! I bet it is very interesting at the same time. I know some that have become "lost" when working on family trees and it all depends on how deep one wants to go into them. I love listening to the stories they have and sometimes what they uncover or connections they make. If it brings you joy while you do it, go for it!
Hope this helps ease some of the anxiety around that question.

BellaDonna1959 · February 29

I wanted to say that I had a really good week. I made a change - I booked Physical Therapy and an appointment with a naturopath. In both places I felt heard and that I was in good hands - these professionals knew what they were talking about and I felt embraced in their care for me. Next I will book a massage. I am lucky that my independent insurance will cover most of these treatments. The massage - feeling hands on me that are not hurting me, poking me etc will feel wonderful. I encourage all of you to take the time to seek out things that will lift your spirits and make you feel good physically. If you have the money - spend it on these kinds of things if they help you feel cared for if not now, then when? I felt less like a patient and more like a person - doing regular things and enjoying the smells, sights and sounds of peaceful, relaxing treatment centers. Just lovely - needed this.

JoanEG · February 29

@Strongwoman I think the scanxiety is more generalized. My surgery definitely comes into play. The funny thing about the family tree project is I think of it as my husband’s legacy since it is his family. I think it has become so important to me as a way to memorialize him. His family were pioneers here in the Cowichan Valley and he and our kids were always very proud of that. I like the idea of having several projects on the go. Photo books are amazing these would be a great idea for my great grandchildren.

Strongwoman · February 29

@BellaDonna1959 Good for you for undergoing self-care.

It is wonderful that you are able to do it and have Extended Health Care that covers it for you. Depending on the modality, will result in different feelings both during and after the appointment. Funny you mention massage. What you said is exactly why I chose the profession. For the simple reason of, Nothing will ever take the place of human hands. There is something to be said about that contact along with the treatment itself that is healing in many ways. If one is able to do "normal" things or "normalize" some activities, I encourage it. It can be joyful for many or even lift one's spirits. As we know, our "normal" can change with our journeys. This in itself can be a transition and process. Much like not seeing the sun for days and then feeling it on our bodies and the warmth of it can be very uplifting. Thanks for sharing and reminding us how self care can be as you put it "just lovely".

Strongwoman · February 29

I want to send out warm thoughts and peacefulness to our Teal Sisters @Elaine @Taita and @HoldingOn

Strongwoman · February 29

@JoanEG Many of us have had generalized anxiety either before surgery or before treatment. Let it be and yourself and your body will process it when ready. Be patient.
That is a wonderful way to memorialize your hubby. I have a friend who is recording/videoing herself reading story books for her grandson for later. If I had grandchildren in my life currently, I would use her idea and do it as well. What a gift to give eh? So amazing that even simple things like that come to mind to do. And hey, it is something they will have forever and can pass on to generations to come.

melissa · February 29

Hi Ladies

Happy Thursday to all. Scanxiety how I loathe thee.... My scan was Feb 9th, no news yet. Finally built up the courage to call the office today. Called 14 times!!! Voicemail full so I called the nurse and left a message asking her to ask my MD to call me when she can

JoanEG · February 29

@melissa that’s crazy! I always hear from my GP within a couple of days of my scan.

Strongwoman · February 29

OMG @melissa That is horrible! I can't imagine having to call that many times and to only get to leave a message and still wait. You must be uber-frustrated! All I can say is....To the gym you go! LOL

You are like me, sitting in an "inbox" waiting for direction as to what to do with me. I know the doctors are super busy etc but it is very hard on us waiting esp given our diagnoses.
Sheesh! What will you do to keep your mind off it now?

Strongwoman · February 29

I am watching "House" on Netflix with my youngest son right now. He says it is popular in his age group (20) Interesting eh?

melissa · February 29

@Strongwoman I've left the message so now I will just wait. If I don't hear anything by Monday or Tuesday I will call again. The nurse I left the message with is good at returning calls and following through on requests so, fingers crossed. About to go out for a late lunch with friends and then hopefully hit the gym afterwards

Strongwoman · February 29

Nice! That sounds wonderful way to spend the afternoon @melissa Enjoy!!!

Strongwoman · February 29

Excuse the swear word at the end....but very fitting for many of us!

melissa · February 29

@Strongwoman don't apologize for the very very mild profanity lol. Kermit the frog rules! And he is very right. I also watched a few episodes of house, couldn't quite get into it. I am a fan of medical dramas though

Strongwoman · February 29

Well.....the doctor is a tad on the sarcastic side. I know....I am saying that very mildly. He is VERY sarcastic which is not for everyone.
Yes, Kermie does rule!!!

jmbarrhaven · February 29

I was just recommended a book called Hope for the Best, Plan for the Rest, 7 keys for navigating a life-changing diagnosis. Published in 2023, by 2 Canadian doctors involved in palliative medicine. So far it is living up to the hype.

melissa · February 29

So after calling 14 times and leaving a message the receptionist calls me and says I will have a phone appointment for my results on March 14th.. not sure how I feel about this

Taita · February 29

Hello everyone. Thank you @Strongwoman
for your kind thoughts. Well things are progressing as the trajectory predicted. Timelines are fuzzy but it’s not tomorrow or next week. My doc came to see me yesterday and we made some med adjustments to hopefully give me some energy and relief from my ilias (sp) which I am now experiencing post twice weekly ascites drain. As some of you know it just sucks the energy out of you and is quite stressful.

My husband is recovering from
his hip replacement slowly but surely. They discovered last week that he has a fractured femur caused my the hip replacement. Happens in 4% of the surgeries. Our elevator is yet again delayed but we needed to go home. My mental health was suffering. Just for information, we used Pioneer, a service to lift us up to the 5th floor through the stairwell. It was almost $1000 because my husband is 6’2 and 240 and he needed to have two teams do it. It was worth every penny. So happy to be in our home. Even if it is only for a little while. I am kind of stuck up here but I am good with that. Hopefully elevator fixed in the next two weeks. We just don’t seem to catch a break.

I have filled out the paperwork for MAiD and have my second assessment done next week . It really is a simple process given my situation and prognosis. I plan to go to Hospice first but am prepared for the next steps. Quality of life is important to me so I will make the decision based on that. My family is one hundred percent behind me.

I have had four years of non stop treatment and it is time. My body can’t take anymore. But I had four years of quite a good quality of life and made many many new family memories.

We have amazing family and friend support. Home care for my drains and my SUB-Q for anti nausea meds all done at home which has been a godsend!! Nurses are amazing!

I wish everyone positive journeys and outcomes and thank you all your amazing support and compassion over the years. I don’t know if I will be posting again but will try. I do read everything posted 😍. Love Taita aka Kim.

Tinazzie · February 29

Dear @Taita, I am so sorry to hear the news and the difficulties you have been going through. Dealing with 2 active primary cancers myself (Ovarian and Metastatic Breast), I do not post much, although I do follow the group and try to stay abreast on how everyone is doing. I know and have always felt how much your family means to you - and how precious you are to them! So, it is not surprising that you and they are at peace with your decisions as you navigate the next steps.

We were both diagnosed around the same time, and along with you, we have lost several dear and courageous Teal sisters. But there have also been twists and healings and all is not gone until it is gone. Stay strong dear friend - and know that you have a lot of support behind you and a lot of strength within you.

Love, prayers and hugs.
Tina.

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