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Readersmaven

@Fearless - Vol Mod here is link to EXCEL program website...
https://kinesiology.ucalgary.ca/labs/health-and-wellness/research-projects/excercise-cancer-enhance-living-well-excel

As I mentioned, I'm

Readersmaven

@Fearless - Vol Mod here is link to EXCEL program website...
https://kinesiology.ucalgary.ca/labs/health-and-wellness/research-projects/excercise-cancer-enhance-living-well-excel

As I mentioned, I'm looking forward to it.

Fearless

@Readersmaven found out the system was blocking your message with the URL. Those go into my spam to verify the site and the sender are legitimate.  A new functionality I just discovered I had LOL.  Learn something new every day.  Anyway pulled it out of spam so for anyone else looking to view that program, the URL is Readersmaven's comment above.  Thanks gal.  

Fearless

Thursday, January 14th and welcome to our weekly live online chat.  

How are you all doing? It’s certainly a challenging time for our mental health. For us in Ontario, a second, more strict lockdown isn’t helping matters I know but it’s so necessary. Who knew that almost a year ago when this began, we’d still be unable to gather with our loved ones for celebrations. Or even just to sit across from a friend for a coffee date. Some of us (me) are more introverted than others and it’s not that difficult to lay low. Others are climbing the walls and yearning for more social interaction. Wherever you are on the scale of ok to not ok, the one thing we can all agree on is that we want this to end.

Add to that I am constantly amazed at how the weather can drive one's attitude.  Here in SE Ontario the skies have been dull and gray for over a week now. The snow we had has been melting and leaving the scenery out my window a mix of muck and mush. Unrelenting blah is the best description and darn hard to tap into my inner resilience as I continue to feel the effects of my current treatment protocol and the enforced confinement dictated by Covid.   

So what do I do to bounce back? Distraction works for me......anything that shifts my mindset into something positive or constructive. Something that requires a bit of planning, some dreaming, some anticipation.  Today it's ME time....and I'm so due for a facial I've set aside time this afternoon to do just that. Mmmmmm, just the thought of relaxing with  warm towels on my face to open my pores, exfoliating the old dead skin, slathering on my favorite creams and the rosy glow I'll be left with is already lifting my mood.  What works for you to change perspective....to put yourself in a state of happy, calm, content?

Well ladies, it's that time....and ready to begin our chat today.  Welcome everyone.....who's ready to jump in with the first hello today?

Fearless

Hi There @KarenBemi @Readersmaven @Tinazzie Think I saw @Rad there too a few minutes ago. How are you all?

Tinazzie

Hi everone....my first Teal Thursday of the year, so Happy New Year!
I agree with you, @Fearless - Vol Mod, it is disheartening to find us still in the midst of the pandemic.  Who thought we'd still be isolating in 2021?  But there does seem to be some light in the tunnel ahead - so there's that!   

KarenBemi

Good day @Fearless - Vol Mod.  A facial sounds lovely right now, but my boss would frown on it.  Fortunately (or un) I work in construction that is ongoing so we are still at work.  But...I keep my mind on the weekend where I will be going for a hike with my BFF.  Love our walks. It lifts my spirits just thinking about it

Fearless

@tinazzie that's the attitude we all have to maintain.  If only they could get those vaccinations moving faster....and people would just suck up the inconveniences and just stay home and stop socializing outside their home bubble.  I saw a program that you plug some info in to and it tells you, based on the national guidelines, when you can expect the vaccine available to you. For me, based on my age, it said I should expect to be vaccinated the first quarter of this year. Good news but what about everyone under 70 but with diseases like ours and who are so vulnerable?

Fearless

@KarenBemi the fresh air is so invigorating and being outside is one of the ways to connect with a friend safely as long as you maintain distancing.  Brrr, too damp and cold here for me, even if I didn't have this darn neuropathy that impacts my mobility.  

KarenBemi

I would have thought that they would have added people who are like you (more than me because I have been out of treatment longer) that they would include cancer patients to the early vaccine recipients 

Fearless

@KarenBemi so far I haven't seen anything in Ontario that includes anyone but long term care patients and first line hospital and health workers. Definitely on my agenda to ask either my oncology team or the gals in the chemo room when I'm back there in two weeks.  

Hi @CynP2020 Glad to see you back.  How is the new grandson?  The yorkies? You?

Tinazzie

I love going for  walks as well!.  That's the one thing that lifts my spirits!  I'm happy that the weather, at least here in NS, is holding up nicely - and going out doors is still refreshing and not too cold.

Physically, I've really been struggling with extreme fatigue, pain and general weakness.  I've now also been diagnosed with scoliosis in my back, so that explains some of the pain I've been dealing with over the past year.  My oncologist has also ordered some blood work to check my CBC levels, as well as a bone scan to rule out any mets to the bone (given my history of breast cancer as well).   So, hopefully, more answers will help.  

How are you all doing?

CynP2020

Happy New Year to everyone.
I am very social but do like my time in the comfort of my own space. To get my social I walk with a friends when she is walking her dog. Other times I do a FaceTime with friends which also helps, My husband is working from home so he visits me between calls.

Wondering how the vaccine will affect people like us on these types of drugs with low immune system.  

Fearless

@CynP2020 I'm told, for what that's worth, it shouldn't have any effect that's different than getting the flu shot.  The vaccine, like the flu vaccines, is not live so there should be no risk of contracting Covid from it.  That said, since I am in the midst of chemo again, I do intend to double check that information when the time comes. 

KarenBemi

@CynP2020 - Facetiming does help too to keep the social.  My last chat with my friends including a toast with some sparkling wine.  It was lovely.  It is the little things that get us through

Fearless

@Tinazzie the fatigue and general weakness is tough enough without the add on of the scoliosis diagnosis. So sorry to hear that. What can they do for that? Is it an outcome of the cancer or treatment or just something else they found that's always been there?

Tinazzie

@Fearless - Vol Mod are you half way through your chemo treatment now?  How are you feeling this time compared to the previous time?  

CynP2020

When going through your first treatments did your CA125 go into range? I had my debulking surgery that got all the visible cancer. I am going into my last cycle of chemo and my CA125 is not coming down in range. I started with over 5500 and it came down into 400's then little by little but now stuck around 190 and last check was 188. I really had wanted it to be a lot lower by now :{

Fearless

@KarenBemi so right. I've so learned the value of the little things.  Just the sound of a bird chirping, or the dog wagging his tail can just make my day.  I find my life and appreciation for things I never noticed before so different. 

@Tinazzie thanks for asking.  Only just finished cycle 2 a week ago and had the chest port installed the day before the Day 8 chemo. So recovering from both.  So glad I did the chest port.  They were able to use it immediately and it made the chemo so much easier and faster.  Right now just letting it fully heal so no heavy lifting etc.  The chemo though has been far rougher than I remembered. Fatigue much worse and then on again, off again side effects...everything from bloating and tenderness to a sore throat and tongue sores.  Just started feeling like my old self yesterday.  Scan on Wednesday coming and then results on the 25th before I go into cycle 3, so hoping to see progress in remission to make all this worth it.  

KarenBemi

Wishing you all the positives @Fearless - Vol Mod

Fearless

@CynP2020 when I went through primary treatment four years ago I was very uneducated and naïve.  I didn't even know the CA125 was being used as a benchmark for progress until long after. I do know I started at 9000 and by the end of surgery and chemo they told me (later) that I had gone down to normal range.  That said, as I became more educated on the subject I learned not to set my expectations on CA values given how volatile the test is.  I know not seeing yourself getting into that ideal 0-35 range is scary and frustrating. Get through your last round and then see where you stand then.  Some people don't respond as quickly as others to the chemo. 

CynP2020

@Fearless - Vol Mod Sorry to hear you have to go through it again!! I can't even imagine how I would feel. How long has it been since your first diagnosis? I think you have the HGS with BRAC like myself. 

Rad

Hi ladies, hope everyone is doing well,sorry to be joining so late.Had my 5th chemo a week ago and still trying to recover. Last chemo for me Is on January 25th and I will be seeing my oncologist/gynecologist before the chemo and he will let me know my next steps. 

KarenBemi

Wishing you all the positives also @Rad

Readersmaven

Hello all! Jumping in late...was about to join and got phone call from my niece, hadn't talked to her for months so was good to catch up. 

Back to self care.... love idea of a facial, definitely later today  

Fearless

@CynP2020 Not BRCA but yes, HGS 3C.  I was "clear" for a little over a year when it came back. That was December 2018 and caught very early.  Lucky me there was a clinical trial we decided to use versus back into chemo and that shrunk my recurrence significantly and kept me stable close to 2 years. Then the drug stopped working  late November so started the chemo early December.  I never expected the drug to last forever so this recurrence didn't surprise me. Just very glad that once again it's very early stage. 

@rad I feel for your recovery challenges given I'm in the same boat right now. Just remember...this too will pass.  We'll be thinking of you ringing the bell and doing the happy dance on the 25th.  Let us know what your oncologist recommends for next steps.  

Tinazzie

@Fearless - Vol Mod - No, the scoliosis isn't an outcome of the cancer treatment.  I think it has been gradually developing.  However, the 3 surgeries and treatment have not helped - likely weakened the body and consequently the mobility of the spine and its nerve tissues.

Sorry to hear about the ups and downs with the current chemo treatment. Maybe it always feels that way in the moment, and then we're so glad when it's finally over, we tend to push away all memories of that period to another side.  I was recently reading some journal entries I had made after my surgery and chemo and found myself thinking - did I really go through all that??   

Regarding regular check ups - although my oncologist is getting me to have my CBC checked, she will not arrange for a CA125 test - or another scan, unless something in the physical examination warrants it.  I know we often have discussions on the pros and cons of this, as there are certainly 2 ways of looking at it. In your own case, was it a physical exam or scan that indicated a recurrence?  

Tinazzie

Congrats and good luck and with your last chemo, @Rad!!

Readersmaven

@Fearless - Vol Mod I'll be hoping for positive news.

Fearless

@Readersmaven how wonderful. Nothing like a surprise call from someone you love. 

@tinazzie my first recurrence in 2018 I caught.  I'd been put on 3 month surveillance, which entailed only a visit with my oncologist and standard blood work, no CA or scans unless something triggered the need for investigation...this the standard protocol and one that so many of us are uncomfortable with.  But then I had learned so much more about this disease that when I started to have to some persistent bowel issues and feel some unusual fatigue I raised it immediately. That prompted a CA which was elevated a bit.  We left it another month and did another CA and it had doubled. That triggered a scan which identified two tiny spots.  So it was understanding my body and good communication between me and my oncologist that caught it early.  This second time is purely a result of intense surveillance that is done for clinical trials...monthly follow ups including physical check and blood work, CA included and scans every two months.  One of the advantages of being on a trial for sure.