Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Community Champion. 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 Community Champion. 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).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
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Next week I will be starting chemo again, so I will not be here. My days are Thursday and its hard for me to concentrate on an ipad. LOL So much going on at the hospital. And the smoke here was bad yesterday and today its drifted elsewhere. It will be back and then I have to stay inside with windows shut.
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My God @Strongwoman you give the words “Strong Woman” a whole new meaning. What a week you have had!!. So happy you finally got some sleep (I do find it can make such a difference). The loss of a family pet is so hard, but the grieving will pass and I am sure every time you cut a piece of cheese you will smile. Your idea to write the email to your friends family was so thoughtful and I am sure it meant the world to them and her. Take care and enjoy the weekend.
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@Strongwoman I am so very very sorry for your losses. To have one is rough enough but two in one week....... unfathomable!!! I don't need to tell you to just dwell on the wonderful memories they clearly have left with you. They and all of us will always live on in the hearts of those we loved and who loved us.
Good luck with your arbitration. You have far too much on your plate to be forced into a move. My husband mumbles about selling our place as he sees the sale prices around here rising daily, despite mortgage rates. I probably wouldn't mind freeing up some major capital right now but the thought of going through another declutter, staging, packing, looking for a new place of some kind, moving and all the effort that goes with it is just totally daunting. Heck, with my breathing issues I can barely get to to the mail box without gasping for air.
@babs272 so glad to hear the hand and foot syndrome is petering out. Keep up with the cream and eventually the disfiguration will diminish, so I'm told by others who've gone through it. But you must be so relieved that the pain is gone or going.2 -
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I have been not too bad waiting for a meeting with a gadtric specialist. My kidney function has inproved a bit. But i think alot of it has to do with the ppi im on. Esomeaprazole. Stopped those and went back too rabeprazole. They dont work as well like the other one. But everytime i go on the other one my gfr plummets. So we know it has something to do with those. My gfr right now is at 49. Came up from 42 a week ago after stopping those pills. Hope it continues to go up.0
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@Fearless_Moderator I know, right??!! It is the thought of all of that which makes it just not possible to even do AND I want my precious time I have to be concentrated on finishing up on the things I want to do for my boys, hubby etc That is what and where my energy is going. I am doing my best to put the rest of it aside. The painting very surprisingly helps greatly.
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I have had no treatment for 6 weeks, so I am feeling good.Bone pain in my legs and knee but, doing good. The Onc is lowering my dose on the Doxil, so I hope I don't get the reaction back.I was taking it so well and HFS snuck up on me. LOL Please no more of that one.LOl And no more rashes it made a mess of my body.LOL
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@ Eileen Sounds like you and your team are working through it. Glad to hear your GFR is rising. That is good. How long are they indicating for wait time for gastro specialist?0
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@babs272 I will second that for you especially the unwanted rashes! I will keep my fingers crossed that the side effects/reactions either stay at bay or go away all together for you.
The bone pain/fatigue is hard. One day at a time and daily walks when you can. Hard to do in this current weather. Movement is good in any form.
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@Strongwoman they say 6 to 8 weeks. My dr put a rush on it they say i am the next but they do not know when their soooo booked up. @babs272 i am glad your hfs is cleared up. Yep had that not fun but i pushed through it. Just said ok u gonna throw this at me well its gonna take a lot more than this to stop me. You go girl1
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Well ladies, it looks like time is almost up and I have to go and start preparing some things for dinner before my friend calls.
I will put up another separate chat about Vaginal Dryness to whomever is interested. I found a product that is natural and was approved by the Oncologist before I used it. It seems to be helping and I don't use it daily.
Everyone, stay as well as you can from the fires and effects there of. I will keep you all in my thoughts and hope to be back online next week.
Take care
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@Strongwoman just woke up from a long nap! So better. Had to be up early as my husband had an x-ray guided cortisone shot in his hip and back this morning. He needs a hip replacement and hopefully this will get him some relief in the meantime. He can barely walk 30 ft and cannot stand for more than a minute or two. Hard to watch him in such pain. They put him on some CBD and THC. Not sure it is helping but we will cross our fingers.I am doing okay. Feeling pretty well actually. Nervous about CT on the 26th given rising CA125 but @Fearless_Moderator great news about her big drop in CA125 gives me hope!Big excitement yesterday!!. I drove for the first time in months. Went and did some errands all by myself. It was glorious. Lol! Always the little things.1
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@Taita
That is soooo exciting and congrats on the driving!
I will keep my fingers crossed for you as well that your levels have either remained stable or declined. We are here no matter the outcome to assist along your journey!
I have started using a THC/CBD and it does help. Mine is more CBD but I require the THC portion as well when it is painful. When I am nauseated, I use the CBD only and it does the trick. All approved by the Oncologist as well. I never thought I would see the day when I would use this stuff but here it is. Whatever works and doesn't cause constipation is the name of the game for me! Good vibes for hubby and that the wait time for surgery is not lengthy.2 -
@Taita. Prayers to your husband. I hope he does find relief in the shots. I go to the pain clinic myself for inflammation shots and nerve root blocks. Just restarted back after 2 yrs. That's really good news that your able to go back out driving.
Ok everyone yes please stay safe with the fires going on. Have a great week.1 -
@Eileen so glad to hear your kidney function is improving. Apparently mine isn't expected to be better than it is now......creatanine around 175 and gfr around 35. That bout of strep I had a few months ago did cause a chronic kidney failure from which I've recovered 25% function but that's the best I can expect. Right now we're focused on maintaining that level since my nephrologist feels it's sufficient to allow for chemo to continue.
@babs272 I'm sorry to hear our timing conflicts with your chemo schedule. We do love to hear from you so when the opportunity does arise that you're more comfortable with your tablet please do chime in.
@Strongwoman I do wish I had a single creative bone in me. Painting would be my first go to. Then again perhaps I could take the Pollock style and no one would ever know I didn't have an announce of real talent in me LOL. But seriously activities like music and art and writing are so helpful, especially for the soul. I think perhaps its not just because they are distractions but rather the channeling of energy into something creative and positive.
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Ladies, it is past 2pm now and time to say goodbye.
To each of you, as I read what you write I am always amazed at the strength each of you display. Continue to hang in. Continue to stay strong. Remember statistics are only normatives and can be beaten. And I look forward to chatting with you all, if you can join us, again next week.Big hugs to all for now.
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Oh @Fearless_Moderator. Yes i am sp sorry to hear about your struggle with gfr as well. Ive been doing alot of reading on the kidney foundation. And asking all sorts of questions with my oncologist. We are doing weekly checking of kidneys right now. I had strep as well few months back when i developed my cold and yes it seems after that that's when my kidneys started declining as well. But my kidney function dropped last yr to 64. Been like that just after i was on those ppi last yr. And now restarting them it drops more. Mmm the kidney foundation does say those ppi can also cause. I remember last yr the gastric specialist i saw back then denied it but then why do they a a black box label now on it.0
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Just dropped in to say Hi to everyone. Looks like you all have places to be...things to do... I was trying to catch up on the last couple of weeks I've been away from the chat. Boy...there sure are a lot of ups and downs and those housing issues are a real pain. My brother-in-law and sister-in-law in Alberta are in a similar situation...finding it difficult to find a house rental in their area.
I am continuing with my trial...not without continued issues that we're trying to work through. I am hoping that my CT scan will be scheduled before my next oncologist appointment so that we can cover both the scan results and my trial blood work at the same time in order to make an informed decision about my move forward. Otherwise...feeling pretty good.
@babs272 So glad you are on the other side of HFS. What a relief!
Well...I hope everyone is having FUN. I think my husband is itching to go out shopping...Canadian Tire, WalMart...who knows what he's looking for now!
Have a great weekend everyone.1 -
I almost forgot to be here today
My chemo is not until late this afternoon. How is everyone today? Hope you are all enjoying the nice weather
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Hello everyone. Mm i guess not to much chats today. Well i ended up having a good cry yestetday. I had my blood work. My gfr and creatine was rechecked. Well it decided to start going back down. My egfr now is at 39 and my creatine is up to 125. Got on the ph with my nurse at cancer clinic. We spoke expressed my concerns on my ppi meds and the trend i see everytime im off of them then go back on. Well my nurse spoke to my oncologist. She was going to do a ct at the end of july. But has now decided to bump up the ct to before I see her in the next few weeks. She going to add the kidney part in their. Their going to use contrast in a different way she said so they can look inside the kidneys to see what going on. I already watch my sodium intake. Been eating really healthy since i got cancer. Now watching what i eat so my gastric issue doesnt flare up. I tried backing off on my ppi meds to see nope in 3 days since ihave severe acid reflux etc. The only thing to try my dr said is to go on those 2 week meds for treatment of h pylori to see. But i thing is chemo gets delayed. 2 im concerned with my kidney function so low it is just going to be a repeat of my severe side effects and allergic reaction. Because im scared with lower kidney function. Your kidneys dont filter out the medication as fast and you get a build up of it in your system. I guess im very frustrated because my biggest fear is my kidneys will fail before my cancer does!
I put a call into my councillor to help me with my stressing out so. My kids seem to think I'm over reacting. They think oh its just the chemo. Nurse told me my oncologist said no the gemcitabine doesn't interfer with your kidney function. At least that's good to know. But i guess your body can only take so much. I asked the nurse if i should start seeing a kidney specialist. I guess that whats prompted the early ct. Well at least its a start. How are u handling your worries @Fearless_Moderator on your decline in kidneys. Im stressing over mine0 -
@GloHo @Babs272 @HoldingOn
I apologize to all of you as I was out having a "fun" day out with a Palliative Friend as we both needed it. Apologies are in order as I missed a message from @Fearless_Moderator that she would not be able to participate in today's chat as she is in hospital with pneumonia and her internet connection is very spotty. Kindly send your positive vibes as will I, to Fearless as she fights this newest battle of hers. Hoping her stay is brief and is able to return home soon.
@GloHo It sounds like you are still in your trial but perhaps experiencing a few more hiccups than you anticipated. Is that fair to say? I will keep you in my thoughts that your CT scan results are what you are expecting to see at this stage. Hoping you will keep us updated with any new news regarding your trial as well. Also hoping the intensity of it is not wearing you down. I bet it is quite tiring at times.
@Babs272 Hoping your chemo session went well this afternoon. I believe from previous posts that you are quite fatigued afterwards and hope you are resting. How are things going otherwise? Spoiling those grandchildren of yours?
@HoldingOn I can feel the frustration and exhaustion in your post. I have been where you are at regarding your kidneys and fears. You can find a lot of what I went through under either Nephrostomy, Chronic Kidney Disease or possibly Renogram. Try those in the search bar. What you are describing for the "special" kidney test sounds like what I had and it is called a Renogram. It takes about a half hour to an hour to do. I described it all in another post but it is neat as you can watch the dye on the screen go through the kidneys, down the ureters into the bladder. My results showed my right kidney was functioning at 24% and my left at 76%. The reason I had it done was to find out if the right was functioning in case I required a nephrostomy and whether they would do both sides still or only one side. It is clear that should I require it, only the left side will be accessed. A stint is out for me as the tumour would cut off the stint and not have the desired effect it should. Currently we do monthly blood work to monitor the kidney function and to determine when to intervene with treatment to preserve the function I have left in the left kidney. Good cries are allowed and good for you. They are cleansing and a release as well as very healthy. This is all wearing on us all and sometimes we all reach a breaking point which is understandable. That is where this community can assist and gives you (and everyone) a safe space to do so.
I am currently doing my best to not allow my thoughts go to my video meeting with the Oncologist this Monday and all the variables as to outcomes and what they all mean. I am thinking I will ask the Oncologist for an "extension" on my prognosis if it is not a good one as I don't have all my projects done yet. LOL
I have come up (with assistance) an idea for Legacy pieces of work for both my hubby and my parents and it also provides me with something to focus on. Tomorrow I see my parents as they are down for a visitation for an old family friend that passed last Thurs night. The person chose MAID after a 7 yr battle with colon cancer. The family stated it was the "most peaceful thing that they have experienced". Perhaps that may help someone out there who is sitting on the fence with it.
Well, I must go now and get some food. Respond when you can and send our Fearless sister a healing message when you can.
Take care ALL1 -
@HoldingOn apologies I meant to address that to @Eileen Only realizing I now as I was painting
At times it's a wonder I function in a day! My mind is full.
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Np @Strongwoman. I just came back from my chemo session. So my kidneys will be checked next week as well. I should get a call from ct booking in the next few days. Not sure if their going to do that exact one like you had as they are still doing my chest abdoman and pelvic as well as my 3 monthly check to see how my tumors are. I have been the last few months reading on the kidney foundation. Keeping an eye on my sodium intake and doing what i can. But yes its frustrating. My councillor left msg on my machine so ill reach out to her tomorrow as she working from home today she mentioned. @Fearless_Moderator. Prayers and a big hug goes to you for a speedy recovery.0
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My treatment went very well today. I had the doxil and avastin. With the doxil, I had my feet and hands iced to ease the hand and foot syndrome I am getting over.I t was a good day even though it was later in the day.0
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@Fearless_Moderator Missed you on Thursday’s chat. Hoping you are feeling better and going home soon.
I missed the chat myself, was unpacking the kitchen after the move, taking advantage that I felt some energy since I am second week after chemo. The treatment seems to be working keeping me out of pain and was able to wean myself off hydromorphe. For now anyway. Oncologist wants CT scan after the 3rd infusion. Keeping fingers crossed.
@babs272 Thanks for sharing your experience with doxil/avastin and icing feet and hands. Is that provided by the hospital ?
My oncologist indicated I will be having avastin in the future.
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Yes, it was provided by the hospital.1
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@Bojenka I am at CVH too and I ask for the icing pads each treatment.1
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Thanks @BellaDonna19590
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I am in Abbotsford
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