Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
OVdialogue – consider joining our team in the role of Peer Support Volunteer. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
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@Hi @Strongwoman please do bob in and out as your power permits. I've seen a couple of community postings out here about power surges and brown-outs so it's pretty common right now for some reason. We're melting here where I am so perhaps the snow on the wires is heavier and the cause.
How lovely to shop for a wedding dress for your niece. I occasionally watch those Say Yes to the Dress shows. I'd never be able to say Yes. I'd want to try everything on in the store if I could LOL. But I will say that I do credit my longevity to having goals in my back pocket. And better yet, disregarding the time lines given me by my care team. Remember they deal only in medians. Had I listened to them when first diagnosed and treated I would have been gone four years ago. Instead, while my cancer progresses with odd times where it's stabilized for a bit I am in my seventh, year of treatment. I was chatting with a friend the other day, whose info similar to mine and we both laughed at the past where we were so fixated on statistics, scan reports, CA scores. Now we barely look at the info and rely on on how we actually feel.2 -
@Fearless_Moderator
Gosh. Sorry to hear you were back in the hospital. Glad it was a short visit this time!
@Strongwoman
Thinking about you and am hoping that the Letrozole is doing it's job!
@mjmck21
So glad to hear you are experiencing positive results with your treatment.
I am waiting for my CT results, which I will get on Tuesday. That will determine my move forward regarding current treatment with Caelyx and Avastin.
The Avastin has raised my blood pressure, so I have been distracted with trying to get that under control. The first med didn't budge my BP and I had a continuous headache while taking it (and Tylenol had no effect on the headache). As soon as I stopped the BP med, my headache stopped. I can't believe how much that headache affected me mentally! So stopped after 9 days. Immediately started on another medication, one pill comprised of two different drugs. In the last three days, I have seen a pretty significant drop in BP and am hoping that it will continue to drop or stabilize, so we can fine tune the dosage.
I have been slowly working on my list of things to do. Our wills have been updated and finalized. I have been doing a lot of shredding! And, I decided to rummage through my jewellery and get some pieces appraised to make it easier if my boys don't want some things and they decide to sell.0 -
@mjmck21 thanks for the welcome back. I did miss everyone and excited to hear your latest news and the positive frame of mind you're in. As I've mentioned in previous posts, the prognosis we're given is generally based on statistical medians. So far I've beaten every one of them and continue to do so, perhaps because I don't dwell on them anymore. That just causes unnecessary stress which is not good for the system. I just focus on how I feel.at any given point in time. From the looks of what you've commented you're focused on all the right things right now. Stay strong as you are right now, don't sweat the small stuff and set time aside to get at those things that bring you the most joy.2
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@Fearless_Moderator and thankful for that. You have been saying not to base too much an CA scores and I listened so it did take the stress off somewhat. When it rises to five digits though I can feel the disease progressing but a number like 530 is good for me right now even though it would be frightening for someone else. I did go as low as 58 last summer.1
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I will be getting a CT scan at the end of the month and that will tell us a lot more about.0
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Hay @GloHo glad you could join in today. Not to worry about my day in the ER. My nephrologist prescribed a "water pill" to aid i my recovery from the long stint at the hospital and decided it would be great to get the first dose administered via IV so it would kick in faster and then onto oral the next day. They called ER who said sure, send her down and we'll hook her up....yah sure! They put me through the standard triage and registration process, then the wai around for someone to access my port, then they decided they wanted their own version of my blood work and chest Xrays so put me through that and then 8 hours later informed me they didn't agree with the nephrologist and to just start the oral med when I picked it up at the druggist. A complete waste of time and would love to be a fly on the wall when my nephrologist finds out his ER colleague unilaterally changed the "work" order LOL.
My BP ended up affected by the Avastin too and it's been a couple of months of trial and error to get mine stabiized again. Good luck. Here's hoping this latest works for you
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@Fearless_Moderator
OMG!! You just have to shake your head at that one! It sounds like you took it pretty calmly...not sure I wouldn't have put up some fuss!
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@mjmck21 I do hear you about your CA score. You'll be interested to know mine started at 7600, went as low as 2900 and then without treatment while in the hospital is back up to 3200. I just ignore it. I know i'm progressing again but other than being sluggish I've no pain or other debilitating side effects and just started back on my Gemcitabine so I'm sure I'll be fine to enjoy a nice summer again this year (my six month goal....realistic and I'm sure achievable)2
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Well gals, our time is up again. Gosh sometimes it goes so fast. Don't forget to wear green tomorrow and if you can't find the blarney stone to make a wish and kiss it come true find a pretend one....or a rain bow.
See you all next week ladies.
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Have a great week everyone!0
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WELCOME TO OUR MARCH 23RD CHAT; ESPECIALLY THOSE WHO ARE NEW TO THE GROUP.
I'm challenged as your host today. YUP, another surprise visit to what's becoing my second home as of yesterday and a creatanine and GFR level off the charts. So instead of my weekly chemo they dusted off my room and sent me here. Shortly I'm off to an ultrasound of my abdomen.....not looking forward to that cold climy goop on this cold gray rainy day where I am. Then my especially nice caregiver, Mr. C, is brining me a Big Mac, Fries and a huge valilla milkshake.....SO THERE CANCER!!!!! So this is to great you and let you know Strongwoman will help host today.So at 1PM, do let her know you're there and what's on your mind today
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Good Afternoon Ladies.
I will be starting you all off today with the chat as our leader @Fearless_Moderator is in hospital and is okay. She has limited wifi and has asked if I would host for today. I gladly accepted.
So, to start off. I welcome anyone new to our chat and please feel free in joining in at any time. For the others that are not new, I was unable to join in last week as we had an unexpected power outage. So, where is everyone at? How has your week been? Anyone waiting results? Anyone received any and want to chat? Anyone under going new treatment and want to discuss? Anyone out there just not feeling good or down? Anyone feeling great? Whatever it is, we are here for you. So I open the discussion to you all and welcome you all and am curious to see where this goes today.
Here is my finished piece of pottery I worked on and off on for the past year. I am showing you both the unfired and fired picture.1 -
Hi everyone.
Update:
CT results showed progression. CA125 up a couple hundred from a month ago. Current treatment of Caelyx/Avastin stopped sinced it's not working. Waiting for an appointment with medical oncologist to discuss next treatment...clinical trial or more drugs/infusions. I am leaning toward doing a clinical trial. The medical oncologist I am going to be seeing is involved in trials in this area, so I trust he will have some useful insight into what would be best for me. I have made it clear that it doesn't have to be local, I have friends and family in Toronto if there is a trial that better suits my situation. I am looking at this in a positive light...I still have some options!
I started on a combo drug for BP and it has brought my blood pressure down significantly. I am usually within the normal range. Now that I am not receiving Avastin, it will be interesting to see if this has any effect on my BP moving lower since it seemed to be the culprit in raising it. So, I am in a wait-and-see situation for blood pressure. I just saw my GP this morning and we discussed keeping the meds as is for now...
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Good Morning, Babs here. Not doing too welll sinceThursday
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@Fearless_Moderator
Sorry to hear you're back in the hospital. As for McD's...you deserve it! Enjoy.0 -
@Strongwoman
Your pottery is beautiful! I recall you mentioning you were doing it in layers...so I wasn't sure what to expect. It's amazing to see the transformation! It looks like it was very time consuming.
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@GloHo
Sounds like you have received quite a bit of information and seem to be in a good place right now. You are open to whatever is thrown your way as to treatment options which is good and are willing to travel. That is also something not everyone is able to do and is a plus on your side. The BP, I agree with your team as to the wait and see, sometimes it takes a bit for a medication to get out of our system as well. They will want to make sure you are staying stable as that occurs. Keep monitoring it regardless so that you can show them what it is doing at your next appt. This will help them with their decision as well.
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@babs272
Hello....you sound like you are not in a good place. Is this emotionally or physically or both? Do you want to share and chat about it? Would you like to talk about anything specifically?0 -
@GloHo
Thank you for the comment on my pottery. I am pleased with how it turned out. My sister is going to make a piece of stained glass to go behind it.0 -
Hi all - finally managed to join you this afternoon! It’s 2:15pm here, and typically my siesta time (because I’m usually fading soon after lunch)! It also usually seems the time for appointments or bloodwork or such on a Thursday afternoon!0
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@Tinazzie
Welcome. How are you feeling these days? So glad you were able to join us and even if it for a brief while. Would you like to update at all?0 -
I’ve typing on my phone and having issues, so do excuse me! Health wise it’s been a rough few months. Some of you may I have ovarian and breast cancer. I have Mets to the bone and liver. Currently on treatment - 3 weeks on an oral type of chemo, then 1 week off. Have had 5 cycles so far and got ct and bone scans this month which show no further progression and some healing in the liver, and no progression in the bones but no evidence of healing. The spine has compression fractures which makes it quite painful but also more dangerous as it is so close to the spinal cord.0
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I have a home BP monitor, so I am able to track daily so it doesn't get out of control...and my mind will not be wandering!!
I have to admit, although I had reviewed my CT report just prior to my appointment and knew what to expect [some lesions/tumors gone (positive), but some increase and new (negative)], I still blubbered. It makes it so real when the Dr tells you! I find that once I have my cry, I give myself a talking to and try to get back into the positive as quickly as possible and move onto what's next.
I have been quite lax in my diet and exercise routine and that is the next thing I am going to have to tackle. It does make a difference mentally as well as physically, and I want to at least get back to some form of self-care that is healthy for me. I find all of these ups and downs are really distracting!
I started feeling mentally and physically better in January. I think it's taken this long for the Carbo/Paclitaxel to wear off. It was my second line of treatment from Dec'21 to July'22. Caelyx/Avastin was my third and other than the hand/foot syndrome (ouch!) and a bit of fatigue, side effects weren't too bad.
Each time I get new results, I realize how much I still have to do on my "to do" list. Still working on it...
I am also participating in a couple of Wellspring programs. I would like to do more, but gosh they offer a lot and I don't want to commit to things that I won't be able to join when the time comes. I don't want to overextend myself because then I would just feel bad and be stressed if I couldn't join something I had signed up for. Fine line...
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Sorry to hear of @Fearless_Moderator’s visit to the hospital again. I hope it’s a relatively short one.@Strongwoman, I love all the legacy work you are doing. I’m hoping to start some of that myself. I find it quite overwhelming and I panic when I think of how much there is that I’d love to leave behind, Yet, I still find it hard to muster up the energy when I feel so physically weak.0
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Okay.....I seem to have lost you all so I am going to ramble on because I like to write and it passes the time.
So, my week has been eventful to say the least.
I spoke with my Oncologist last week and like I suspected (from seeing my CT results) my tumours are growing along my descending colon and I have a new growth as well. There are multiple areas and it is all along the colon (descending) pushing from the back, side etc. So, the thought is we can't do radiation as it can sometimes do more damage than good. More importantly in my case the bowel could be damaged. Knowing this, I still asked if we could review it with a radiologist and the oncologist agreed and thought we should. What I didn't know and naively thought was that the doctors would talk amongst themselves, not me going to an appt. Which I am now! Next week. Oh well. I can do it!
I must have said something in passing about my Palliative doctor (I truly don't remember) when I spoke to the Oncologist. I say this, because they called the next day and we had a good chat.
I was feeling okay and good for me and then Saturday it all came crashing down. We were out doing errands and I had nausea hit hugely. I was fortunate I had an Odansetron in my purse and took it but it wasn't my sublingual one so it didn't act fast enough. I was almost to the point of vomiting and thank goodness that passed. I came home and went to bed. I ate and from then on out every time I ate, I felt bloated, uncomfortable etc. No localized pain but pain. Not nice and sitting was worse for it. I stuck to a liquid diet yesterday and today as well. I still am not feeling great in my abdomen and standing etc worsens it, I do feel a bit brighter today.
I have watched the newest Downton Abbey movie and really enjoyed that. My boys have left the house for a bit so it is quiet here.
I found out that someone I connected with is in Hospice locally. I dropped in to see them when I was there for program yesterday but they were resting comfortably. I spoke briefly with a family member and will continue to drop in when I am there.
I have found out today yet another dear friend has cancer and has yet to go in for any surgery or treatment.
It seems like this is all around us and there is so much happening.
I snapped on my boys yesterday when I wasn't feeling well. I am sad I did it but on the other hand, they needed a bit of a wake up call as well. We have chatted since and I apologized and so have they for not participating more at home and helping.
So that is where I am at.2 -
@Tinazzie
I get it! It is so hard when we aren't feeling well to do some of it. I have seriously been thinking of asking for some help with some of it. I am trying to figure out in my head what that would be and what I want it to look like. Not sure. Could that be an option for you with some of your legacy work? Someone helping you organize or do some of it. Writing can be done in bed but there is always leaving voice messages for people too.
Might help.
So it sounds like you are no further ahead but remaining in a status quo so to speak as far as tumour growth. How do you feel about that?1 -
@GloHo
You said it! It is a "fine line". Only you know what that is and what that looks like for you. We can over extend ourselves at times which makes it difficult. I believe we do it for "fear of missing out" so to speak. Meaning we try our best to find so much to look forward to and experience plus leave behind that it can be all consuming at times. I truly wonder how I every would have worked through all of this. I would have given it my best shot, that much I know. If I also know myself, I probably would have been in hospital because of it. So I am glad I retired.
Do what you can, when you can and enjoy. Take the time to slow down and smell the roses. We forget about that a lot or at least I do and I have to remind myself to do it.
I am looking forward to spring and seeing the new growth sprouting from the earth.2 -
Legacy work...I have thought about it and want to do it. But, I can't seem to get my head wrapped around it yet and do not have the initiative or mental strength to get started. I have started my To Do list, which does include legacy work, but have been focussing on other things that can be done a little easier...although still difficult when put in the context of why I am doing it!
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Thanks @Strongwoman for the advice - will try taking certain people up on their offers to help. My bestie is always looking for ways that she can help - so that is an option.How do I feel about the stats quo? Im not sure. One thing I know, is that I am so grateful for the time that I have been given. When I was diagnosed with the recurrence last summer, all I prayed for was that I wouldn’t go before my daughter’s wedding - which was a month away. I made it to that - and more.0
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@GloHo
Yes there is that part of the Legacy work as well. I work on the writing parts when I feel like it. Some of the other stuff like organizing etc. I don't find as daunting. I have made 2 baby cocoons to put in their Memory Box I am doing for them. I have 2 more to do as well. Next time I am out, I will go grab more wool for it, Trying to do some baby blankets up too. I do when I want to and feel I can. It's hard when you feel like a big bag of poo to engage in anything.
Do what you can when you can or involve others to help you. Wish you the best and will catch up next week unless you post something sooner.
Take care0
