TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)

GloHo

@mjmck21

Hi. I've posted my response in the clinical trials discussion. Here is the link:

https://ovdialogue.ovariancanada.org/discussion/98/0/#Form_Comment

GloHo

@mjmck21
I seem to be having a problem posting my response. I will try again tomorrow and send link.

HoldingOn

@GloHo. Thanks for sharing the thrilling news! I am so happy for you. This lifts everyone’s spirits ❤️

HoldingOn

@Strongwoman Not a single one if us in this group chose or deserved ovarian cancer but there are times along the way I feel privileged to seeing and experiencing the deepest kindness and compassion in people. Something that maybe I wouldn’t even be aware of in other circumstances. This glimmer 

hope2022

 @Taita @Fearless_Moderator

I wasn't able to join in yesterday, but did notice that you are both on Gemcitibine. I am on it as well, and have had more diarrhea than prior chemo drugs. Have either of you experienced this too? I realize it is one of the side effects. 

My June Ct was stable, but CA 125 has been up and down, so hoping the diarrhea is the drug and not the cancer.

Fearless, good luck with your CT this week.
Taita, I hope your ascites and bloating improve after a few rounds of chemo. 

GloHo

Hi everyone. I am not able to join today...am in treatment. I wanted to share some more good news. I received my CA125 results and they have decreased by approximately 40%. Now...my CA125 has been the highest it has ever been and I know that the initial drops in CA125 can be significant and slow as you move through treatment, which is normal. My Oncologist explained it to me early in my diagnosis. Since my CT results showed only some decrease, I wasn't expecting the CA125 result to be so significant. I guess it is hitting stuff that isn't showing in the CT. Whatever, I am happy with the positive results I am getting from this immunotherapy treatment! I have a long way to go to get my CA125 down...fingers crossed this trend continues!

I hope everyone is enjoying this beautiful weather and getting out and about. 

Fearless_Moderator

WELCOME TO OUR CALL THIS THURSDAY JULY 20.  

Wow where has summer gone.  I don't like to think it's half over.  I'd rather focus on the time ahead.
Who else is enjoying these balmy days?  Yes. mid afternoon they get way too hot and I run for cover.  For me that's just the area on the deck shaded by one of our old and huge maple trees.

It's almost 1pm so let's get started.  Looking forward to a robust  discussion today so please say hello and tell us what's  on your mind today,

Taita

@Fearless_Moderator
Yes, I am enjoying all of these lovely days!!  Well quick update, the ascites is still here but seems to be a bit less (maybe just wishful thinking LOL!)  What makes me think it is a bit better is the elevator in our condo building has been out for almost a week (hopefully repairs completed tomorrow or Monday) and I have had to climb as we live on the fifth floor (down fall of the beautiful view and living in the tree tops) and with a break, I have made it up not badly.  So small things to be thankful for, although I have a once up per day rule!!!

Second cycle of Gem completed and had lapelga shot on Tuesday, slept most of yesterday which apparently is not unusual in the first couple of rounds so hoping for a good "off" week next week. 

Heading into Toronto tomorrow for a family weekend to celebrate Tom's 74th birthday.

Next week I am putting together a chronological synopsis of my journey so far.  My oncologist doesn't have direct access to my trial information from last year as well as the results of the Bio-Diva study, etc. She can get them by asking, but I thought it would be helpful for her to see the whole picture as well.  Because I am HR2+ for my breast cancer (which she said is "interesting") there may be another line of treatment available through that. Who knows, but I won't leave anything on the table as they say.

Oh and yesterday I had a call from friend who just happens to by the Prime Minister checking in on me so that was nice. 

I think that's it for me, except to say that Amira is growing so fast and is so darn cute!! She is now swimming a bit without her life jacket. We all hold our breath for her.  LOL!!

I don't see anyone else coming on today so maybe everyone is out enjoying the sunshine.

Hope you are doing well and things have settled down.

Taita

@hope2022
I just noticed your questions about Gem side effects and diarreha.  Mine has been must worse with this last treatment. I think the ascites contributes to it as well.  Even though I am on Senakot every other day (I have something called sticky bowel) I do take a half tab of imodium sometimes just to get a break. Part of the roller coaster as I call it. Hope it passes and you feel better.

Strongwoman

Good Afternoon @Fearless_Moderator and @Taita
  It has turned out to be a beautiful day here too.  I was a little skeptical this morning when we left for the market as it was fairly cloudy. Low and behold it cleared over at the market and it has been blue skies ever since!  I shut the house up this morning as the news had said it would be humid and am thankful I have.
 I will be popping in and out today as I am washing up and putting away all my finds from the market.  It is a daunting job but does need to be done.
  @Taita Look at you go with your friend checking in on you out of the blue. That must have brightened your day especially if you had not heard from them in awhile.  Sorry to hear of your stair climbing. My friend in Hospice, has a small elevator in her parent's home and has been waiting weeks on a part. I hope it is not a shortage issue for either of you and that it gets resolved soon.  I like your "one a day rule".  
As for the ascites, I feel that would be some reassuring news based on what you wrote. It would make me feel a little better if I were in the same shoes.  I have had and continue to have quite often the same issue as you "sticky bowel".  I now keep wipes beside the toilet to make sure I am clean and to save my precious bits. I use Restoralax daily as the Senokot causes me to have too much cramping.  I have a feeling I have a bit of a "lazy" bowel from the initial surgery and bowel anastamose.
  I had my Oncology appt yesterday (monthly), and asked for a urinalysis as well to check on things. It came back very good and my bloodwork is good as well. This means that my kidneys are still doing ok and we don't have to intervene yet. CA 125 level won't be in until tomorrow or Monday. I expect it to be a bit high or elevated as it has been continuously rising and significantly for my case anyways.  So that was good news of a sort.  I had 2 pain crises within two weeks and we are discovering that if we hit it hard and catch it right away that the subcutaneous port and extra hydromorph thus far has been successful and that I don't get into the vomiting and partial bowel obstructions. I also start changing my diet when it begins now as well.  I have been more fatigued than normal which could be progression or how the narcotics are leaving my system. Who knows....just more excuse to knit and watch TV.

Taita

@Strongwoman
Sounds like you have had a great day!! I have been thinking about Restoralax as an alternative. I am really gassy which is causing my hernia to protrude. I am going to have a check in with my family doctor next week and I will ask her. Thanks for the tip.
I swear, managing our bowels is half of our work!!!  Are they are putting you on a low fibre diet.  I was on it for 8 months during my trial and then back to regular and then back on it when I had a couple of partial bowel obstructions. I find it pretty manageable except as corn and tomato season are coming in.  I will have to cheat just to have a taste .  Glad you have found a way to catch the pain right away and avoid those awful symptoms.  Must be a relief!  Just to let you know, our granddaughter asker her mother if all we did was watch tennis and golf?  LOL! She said "pretty much"!! No need for an excuse, just enjoy

Strongwoman

@Taita Here is what my Palliative Doc said about Senokot and Restoralax.  Envision Restoralax as "putting water back in", it works via osmosis and pulls water into the bowel.  Senokot is the "pusher" it moves and causes smooth muscle to act and push the feces through the bowel.  She explained that with my boys when she had a home visit. It stuck with me and makes sense.  Hope that helps you.  Some take both because they do two different things.
  No they didn't put me on a low fibre diet but am careful what I eat and how much. I am down to one "big" (big for me anyways) meal a day and snacks in between.  I mainly eat chicken or fish and am going to watch myself with all the fresh veggies to see if anything is a "eat in moderation" thing.  I hope not because I LOVE food!  I find fatty foods irritates things and processed foods as well.  I do what I can but absolutely LOVE ice cream!  
  LOL about your granddaughter.....their view of the world is amazing.

I went to a Play with Clay thing with 2 ladies from Hospice last week.  We are creating windchimes to leave for loved ones.  We were all so fatigued when we got home and the following day. The other day, one of the ladies and I were talking and we figured it out!  We think it was not only the physicality of it but...the creation of it and using that part of our brain. We were so focused on what to make and how to do it. For example, etch it into the clay or actually make it with the clay or use a mold etc....  Once we thought it out loud it made sense as being creative can take up a lot of energy although we don't realize it!

On another note, I spoke to my Oncologist about my Landlord issue and requiring a letter from her regarding my condition etc, and I spoke of how the real estate guy that came was so aggressive, pushy and refused to leave after speaking with my hubby and my vet.  She stated, "I will not be having any of that!"   So, I hope that means something. She has my permission to speak to my paralegal so they can come up with how to put in a letter about my condition, prognosis etc AND how to relay that although I don't look sick that I am, I am able to be out and about when I am well and the prognosis is not looking favourable. I will be curious to see what they come up with because I find that difficult to say to people myself. I know most in my palliative group feel the same way I do about the "well you don't look sick" statement.

Fearless_Moderator

Welcome to todays online live chat.   I won’t be joining you today.  I’m sending this from my hospital bed and although it’s not serious I find using my iPhone just not easy. I’ll join you all next Thursday.  Have a good chat today. 

babs272

Babs here. Just back from chemo this morning. All went great! My short one today. Still have 2 more full sessions to go. Maybe finish by end of Sept and then I do not know what happens next.
The sun is shining bright today and I plan to be out there as much as I can tending to my garden this afternoon. A black bear came and demolished the corn the other night.
Yes we have Bears in Abbotsford.
 Hope everyone is doing ok.  Have an awesome day!

Strongwoman

@Fearless_Moderator My thoughts are with you and I am sorry to hear you are in hospital once again. You would think one would get 'frequent flyer miles' eh? LOL  Just a little of some dark humour as we battle what we battle. I do hope you have whatever is going on addressed and that you will be home as soon as possible. Take care and get mending!
@babs272 Apologies for not being in the chat yesterday. I had a myriad of situations going on at the same time when it was time to be online. One can only control what they can at any given time. 
Black bears!  Yes, I heard they can be an issue there and very destructive. In Alberta they are experiencing issues with cougars moving into backyards. I don't know which I would prefer!
You go girl! That feeling of 2 sessions left is a good one. On one hand you think ugghh 2 more but then once you are receiving that 2nd treatment, your brain switches to, this is my road to my last one!  Strange how the mind can think at times.  I hope that you will receive a break from treatment either short or long but preferrably the latter so you can enjoy more things.  Glad you are doing well and enjoying the sunshine. For those of us in Ontario, we are mostly hiding from the outdoors as the temp is supposed to be record high with Humidex over 40 before rain is to come in tonight. Cross your fingers for us and that the temp goes back down to something more comfortable

Hooodith

I just want to say that one of the things I look for in these forums and chats is how long people have been surviving this horrid disease. I have been for a year and a half and just started my second lot of chemo after being in remission for almost a year. When I hear women say four years or more it cheers me up so much!

Hooodith

Also, Hi Babs in Abbotsford. I am on Gabriola and we have cougars and black bears right now. Well, its fawn and blackberry season, isn’t it? Good luck with your treatment and I hope you enjoy the rest of the summer over on the mainland.

Taita

Hello @Hooodith there is never a dull moment on this roller coaster. The strength of this group for me is learning from the  strategies and experiences of others. I have been 3.5 Years now and am doing my best to still be around for some time to come. Being own advocate is probably our greatest opportunity to have some control. Enjoy the summer and good luck with your treatments! 

babs272

I will not be here for chat tomorrow. Have Onc appt in morning, little dog goes to groomers, and then, I may have time for myself for a bit.
All is going good. Two more months to go to complete my 6 cycles. I would have be'en done by now, but that reaction I had for 2 months put me back and had to start from scratch again. I will admit, it does get harder the second time round. After 4th treatment I am finding my energy is down for about a week. Then I pick up, do all my normal things, and then its back to chemo. At least I am only there for 1.5 hours at most.Not so long like carbo/taxol. I remember those days, 3.5 years ago. I just hope I see another year and one day at a time. So far, so good.
Trying to keep positive. I think our summer weather  has done that. Lol 
Hope everyone is well and the treatments are working. I sure hope mine is. My numbers went up last month a bit and a little worried. Find out tomorrow at the Onc office.
Good luck and enjoy the sunshine where you are.

Hooodith

Thanks for the numbers everyone. I feel boosted.

Fearless_Moderator

THURSDAY, AUGUST 3 AND TIME FOR OUR WEEKLY CHAT. YES, IT'S TEAL THURSDAY ONCE AGAIN!!!!

I won't be with you other than to post this welcome today.  I'm just out of hospital, this time renal failure, and feeling just awful but on the mend.  So for those who join "in progress" please introduce yourselves and tell us what's on your mind or send a note of encouragement to a member who may be struggling.

Cheers for now and hope to connect with all through the week and for next week's chat.

Taita

@Fearless_Moderator
So glad to hear you are home and on the mend. Sounds like you had a rough go!! 

Just a quick update. Kidney stent was replaced Tuesday. Still on Gem but with low platelets so now reduced infusion. Very minimal side effects. CA125 dropped from 1130 to 720 after one cycle then back up to 910 after the second cycle. Crazy!! Ascites is somewhat reduced (on two water pills as well) but still carting around an extra 12 lbs or so. Having a tap tomorrow.  Low hemoglobin so transfusion Wednesday. Then off to Disney on Saturday (all 9 of us)! As I think I mentioned Tom and I will have scooters so I think we will be able to handle it and enjoy our time together. 

Elevator in our condo building still out. Three weeks and counting with no end in sight. 5 floor climb is not fun!”

I hope in the next few weeks I will be able to share some of the creative options we are looking at for next steps. 

Hope everyone is enjoying this beautiful summer and keeping all those positive thoughts front and centre as best we can. ❤️

jmbarrhaven

I too have been reading posts over the last year and a half.  My doctor was not helpful in giving me any sense of what "terminal ovarian cancer" looked like going forward from early Stage 3.  This weekly chat has been very helpful in fulfilling this role.  I have to say that in general the discussion has painted a better picture than I envisioned.  I have also picked up a lot of useful tips and ideas.

Because I was early Stage 3 without a lot of issues, I didn't feel that I had much to contribute to the discussion.  However, with the diagnosis last fall of a second cancer (breast) and then the reoccurence of ovarian cancer this spring, all that has changed.  I am going to try and be a more active participant.

GloHo

Hi everyone. The site sure has been active over the last few weeks. Just want to say...I am in awe of how resilient everyone is in dealing with the various issues that we all have to deal with at different stages of our journeys. I am so appreciative of everyone's openness in sharing their stories, strategies, and feelings. Your frankness has been very helpful to me, personally. It is difficult both physically and emotionally. There are ups and downs. But the trend I am seeing in all of you is positivity and flexibility in moving through all of the obstacles that get thrown our way! This is an amazing site that offers so much support when we have questions or concerns. This site also allows us to just say what is on our minds and know that there is someone here who will understand...we are not alone in our journey. Moderators...a special shout-out to you...you have been so very welcoming and supportive! Thank you so very much.

For me...my last cycle was a bit mixed up. For some reason, someone calculated my dosage incorrectly so I received 30% instead of 50% of the trial drug for the first three days of treatment week. The positives were that with a reduced dose, the side effects were lessened, my blood counts did not go up/down as drastically, and I was able to get 5 out of 5 days of treatment. I have a CT scan prior to my next treatment and my CA125 test on Day 1 of the next cycle - so I am anxious to see how things are in that respect. Overall, I feel very well on my off weeks. I am just starting to get comfortable with the schedule and am going to try to be more mindful of the timing of the medical appointments my husband and I have between treatments and try to keep them as close together as possible. Right now they have been spread out, one appointment one day, another the following week, etc., so it has been difficult to plan fun things to do between. Lesson learned and will adapt. 

Have a great weekend everyone!

mjmck21

Hi everyone,
Again I missed our chat so wanted to say hello and let you know I am reading in between. @GloHo thanks for your update. I am still in line for consideration on this trial but because the current treatment is working well they are going to wait until it doesn't before they assess me. @Fearless_Moderator so glad you are out of hospital thinking of you as you recover. @Taita glad you have some respite from the ascites and looking forward to pics at Disney, @jmbarrhaven you said it so well. This forum really helps us to know what may come but to have perspective and know that we can still have good times through it all.

I have been on a treatment break since end of April. In that time I have had some of the best months of my life i think. A trip to the UK honeymoon with my husband, ( I didn't mention in all that was happening we got married in January after I recurred) and a magical month in July free of treatment sailing, swimming, sunning, eating ice cream and enjoying life with family and friends in Ottawa. Now I still feel very good but the CA125 has jumped up to over 8000. Which was expected because I tend to do big numbers but I hoped for a little less. I am still waiting a bit longer to start treatment again, mostly because i still feel really good but that will happen in another few weeks. I know the next few months will be less enjoyable but this latest break was completely unexpected. 

Question. Is anyone taking part in the OCC walk in person or virtual.? I have not been involved yet and am not sure of what my energy will be just wondering who else has or is.

HoldingOn

@GloHo: So glad this trial is happening for you! I’ll be watching out for your news on the results of your upcoming scan and CA-125. 

🤞🏼
It’s a roller coaster with the unpredictable twists and ups and downs. I’m glad too that we have this community where we share news, understand the feelings and support one another. Even when you’re surrounded by supportive friends and family, it’s hard not to  feel isolated. I’m looking forward to participating more. 

Right now, a few months after the cancer metastasized to the pons area of my brain, my oncologist is suggesting that I stop chemo altogether and focus on quality of life. This decision is a tough one to make. In some ways it’s surrender, in some it’s the most reasonable because it could prolong the time I have. I’ve got a week to think. An upcoming CT scan might give me the information I need. Oral chemo is an option. My head is spinning 

Hooodith

I missed the chat yesterday too. I was busy, too busy, helping my husband get the house ready for our kids and grandkids coming over here from the mainland for the weekend. I have not seen any of them for 18 months as I have been too sick with one thing or another, or they have been sick. Its probably risky as I have just started a second lot of chemo, but I miss them so much! We will have eight people tomorrow and another four on Sunday. I have eight grandchildren, ages from 28 to 8 yr old twins. My friend came over and cleaned out our fridge the other day, and I have been slowly tidying when I can. My husband tells me “ It will be what it will be”. But he has had to do most of the work and I feel so rotten about that. He has too much to do on normal days because I have very little stamina. And today my guts are upset and I have a headache and he has forbidden me to do anything. I hate this. We were always a team and shared all the work. Now I watch him working from morning till night, getting tired, stooping a little, but always, always kind and rarely complaining. This is not just my journey. Do other people relate to this?

mjmck21

@Hooodith yes I relate completely. My husband is the same and although its more balanced between us now it's going to get worse into the fall as I resume treatment. The isolation from people, physically and emotionally also feels similar. For what it's worth right now is the likely best time to see people. I am as we know covid and other diseases will increase with the colder weather and we go inside. I hope you had a wonderful time. 

Hooodith

Thanks mjmck21 I did have a wonderful time. Only two of my family couldn’t make it. But I overdid it and now I am suffering. They all said they would be back for my birthday in October, but I will still be on chemo and who knows how I will be. People say chemo side effects get worse over time. So today I am feeling quite sad and gloomy. Not one of my best days. At least I have the memory of my nine yr old twin grandsons telling their Mum that they didn’t want to go home. 

Could somebody tell me how to post someone’s nickname before a reply?

GloHo

Hi everyone. For some reason, I am feeling out of sorts. I think it has to do with living life vs cancer balance. I have had a lot of cancer-related activities over the last few weeks and I don't think I balanced it with enough personal/fun activities. Plus all my cancer-related stuff has been spread out over the last two weeks, so felt like no downtime without thinking about what I'm doing next. So...lesson learned!! I will be more mindful with my cancer-related bookings in the future!!

I have a CT scan scheduled for tomorrow and my next cycle starts on Monday.

Well...I'm heading out shortly to run some errands and get some camping stuff to my son for his outing this weekend. We get to babysit our grandpuppy this weekend! She is such a sweetheart and brings so many smiles and laughs when we have her. Plus, I get a generous amount of exercise from the walks with her. Win-win. 

Have a great weekend everyone. 

@Hooodith Just type the "@" sign before the person's name.