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@Strongwoman I have tears in my heart for you this morning.
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Thank you @Tinazzie it is not easy doing it all some days. So I putter along at it when I can. Today was a tough one being that the wrapping was for my two sons and my dear and close niece and nephew. The writing part was hard. I was able to start journalling in the niece's journal today and on something lighter and common ground about quotes from a book we both read. Now I am done with that for today and time to go do some knitting. Still haven't managed to get dressed yet or feel the motivation to do it. That is okay a pj day is in order some days. I have been productive as well so it makes me feel good.
How do you feel about starting your chemo regime next week? Ready for it? Starting the Legacy projects is the biggest part of it. Finding a starting point and going with it. Sometimes having themes if you have one can help too. I have looked ahead at some things I may miss like the birth of grandchildren and used that as a starting point too. Who knows its a 50/50 whether I will or won't be here for that and I am good with either because I know I am prepared. So off to knitting and some binge tv watching next.
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Thank you for those tears @Hooodith I understand them and appreciate them. It has been a day. Moving on to some binge tv watching and knitting next to get myself out of some of this funk. Time to switch gears for a little bit. The Journal writing for individuals takes time and spacing. I am getting better at recognizing all of it and thank you for all your support with this @Hooodith
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Currently in the middle of my first chemo for my second reoccurrence of HGS ovarian cancer. Surprisingly my CA125 only went up by 4 after a jump of over 50 in early July. I quadrupled my statin, Atorvastatin, from 10mg to 40mg per day. My general practitioner was happy to do it since she is aware of what a great drug it is. I didn't even have to do a blood test. How often does that happen!! I wanted on it because there is some evidence that it increases ovarian overall survival by delaying platinum resistant status. I also read that it is believed to increase the effectiveness of chemo. Not sure if its responsible for the much reduced tumor growth. Time will tell.
My big project has been sorting and purging 40 years worth of files, publications, drawings, photos, disks, etc. from my career as a landscape architect. It's been a big job to determine what needs to be destroyed for security reasons, what can be recycled and what can be given away. Sometimes its very hard to get rid of drawings and reports for which I am very proud and/or loved working on. So much is in obsolete formats. It's just seems so wasteful to get rid of such valuable information, but few want it. My family always does digital photo montages at celebration of life of departed family members. I'm seriously thinking about doing one of all my favourite projects. Few of them have any idea of all the amazing projects I've been involved with over the years.
Some time ago I was inspired by @Strongwoman legacy projects. It made me realize that had a basement full of good size acrylic paintings that would make great legacy gifts to family and close friends. It's been really interesting which one each person has picked. I'm still painting in a weekly open studio with a bunch of regulars. It's one of the few things I can reliably and safely attend.
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In the middle of your first chemo session eh? How is that going? You seem alert enough to be posting which is good to see. Sounds like your doc was ahead of your thinking which must have been wonderful to not have to advocate nor fight for what you wanted the outcome to be. Time will tell seems to be the theme for it today and we will take it. Do it and worry about outcomes after.
Purging and that many years worth is a huge project. Determining what can stay but for other reasons must be purged due to privacy reasons is a big project in itself but does take some guess work out of that. I did my files initially a year back and now have some I have to go through and purge a little bit more now that tax time is done again for another year. My girlfriend is storing my other stuff as we were in the same profession and she will know when it is time to purge those files. I think your idea of a video montage of your work projects for everyone to see is a brilliant idea. I wish you luck but fun at the same time pulling it all together. We were given a digital photo album that I have as to yet take out of the box and start putting that together of things I want on it. Another project for another day. I think your family would be amazed to see all the projects you have completed and will be a nice surprise for them all to proud of.
Thank you for letting me know that I inspired you @jmbarrhaven it is very humbling to hear that. I am happy to hear that you were able to find some projects or soon to be projects in the basement to get everyone started on. Sounds like even the picking process has been interesting to see what they will do and why. Glad to hear you are still able to safely and able to get out once weekly for yourself to complete or keep working on your own project. It must be very fulfilling to do so. Good one on you and when you are ready, perhaps you will show us your work in progress. Sometimes that can be inspiring to others as well. Thanks again for sharing and hopefully your infusion isn't too much longer before it ends today. Rest up tomorrow. Take care. 🤗
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@Since I have time now, attached are some of my favorites.
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They are beautiful and amazing. Do you have a favourite one yourself @jmbarrhaven
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@Strongwoman Thankks. Yes, the artichoke flower. I also still have the logbook painting and 2 others. The rest are up for grabs by family and close friends. The other two are among those picked.
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Amazing work and thanks for sharing with all of us. What a great past time of yours. @jmbarrhaven
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@Strongwoman I got a call from the surgeon’s office with an appointment for a consult on August 1st. I guess I will find out then what options I have in regards to the bowel surgery. I have been thinking about my legacy project and what form it will take. I keep procrastinating, my brain keeps telling me I have lots of time. I have 5 siblings, 2 kids, 4 grandkids and 4 soon to be 5 great grandkids. Not to mention the spouses of my kids and grandkids all of whom I love very much. The task seems daunting. Sigh. I work better under a deadline (pun intended).
@jmbarrhaven your paintings are lovely and will make amazing gifts.
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When I think of the date of Aug 1st it seems so far off but it truly isn't. So you will find out soon enough what options you may have available to you regarding your bowels which is good. Takes away any guess work that is for sure @JoanEG
As far as your Legacy project, it is a big one. I started with whatever came easy and naturally to myself first and went from there. It morphed into more from there. Like this cow I am painting now. For a gf who has stuck by me from the beginning and now that my more immediate family stuff is mainly done I felt I could fit this in to get it done for her. It literally took me a day to do it so easy peasy. Anything that I found easy I knocked off first and I am now left with mainly the writing and pulling together of photos which will take longer and that is okay too. The writing I am chunking down into bits and work on someone's daily. Not the same person every day so I feel like I accomplish more. I will get there, just reminding myself it isn't a race and to complete my thoughts before wrapping it up for the day. Today wrapping the "I Love You Forever" books up for the boys and my niece and nephew was very emotional and took its toll on me. I took my time and did what I wanted after that as I felt quite drained. But now I know it is done. One more part to their collaborative gifts they are all getting and then maybe I can start back on the crochet project I had in mind for them and get it completed. It is like a chakra thing on rings that I thought they would like and be a forever gift from me. I will need a refresher lessen from my Aunt of course and then can go from there. Knitting is my forte and crocheting well I am getting there and that is ok. I have a sweater to finish off for a friend that she gave me a bit ago to finish for her and one that I have ends to sew in and that is done. So a few more odds and ends projects but not my legacy projects. I am getting there slowly and glad I have had the time to be able to do all of this when I feel well enough and to help fill my day full of good things that I enjoy doing. Today I had a pj day all day. It felt good and that is all that matters. Tomorrow is another day and I will shower and dress for sure. Lazy day filled with emotions today allows for a pj day in my books. I threw a lasagna in the oven for the boys tonight for dinner. That is my contribution to them eating tonight cuz I am not in the mood to cook for them either. Sad state of affairs it is when I don't want to cook. Heat something up for them, fine but to actually cook I have no desire or willingness to do so. Hoping that shakes off soon too. Tomorrow I thought I would figure something out so they can have chicken fajitas for dinner. That would be a bit different for them and they would enjoy for sure.
Tomorrow is my Hospice day and I think I am giving my Legacy gift for my friend in my group tomorrow to her. I thought about waiting but truly we are waiting out each other and I think she could use it as a pick me up for sure rather than waiting and who knows what that would look like if I did. Will I out live her or will she out live me. We never know so is why I thought I would do it tomorrow so she can enjoy it. I am sure she will. She will be surprised of that I am certain. 🤗
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See @Strongwoman you all make me realize that I've already done some heavy legacy work. I'm older than a lot of you, so I've had some time. I just thank heavens that I didn't get into that hole of saying, "Oh, I'll do that when I retire."
In 2014, after 3 years of interviews, reading daily diaries, researching liability law and self publishing, I published a book about my father, a well known Canadian botanist, called The Real Weed Man" I just recently dug up the audio tapes of me interviewing my father and mother, as well as Word documents of the transcribed diaries and interviews. It's such a great resource for our family. One of the chapters is about stuttering. My father and quite a few family members stutter to some degree. The amazing recorded discussion we had with many family members of all ages talking with my oldest niece, the biggest stutterer in the family, was revelatory to everyone. It had a lasting positive impact on this difficult topic.
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@Strongwoman you accomplish more in one day than I do in a week! Tomorrow is my great grandson’s 10th birthday and I still haven’t made him a card! Card making is my passion but lately I have lost my “muse”. My creative juices have stopped flowing. Some days I feel like I’m using my disease as an excuse to do nothing. You on the other hand, get stuff done even in a pyjama day! You are so talented!
@jmbarrhaven my goodness you are a woman of many talents!
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@JoanEG Thanks, but I am also fully aware that I did most of it at a time when I was hale and hardy and not in the later stages of this terrible disease. I cannot fathom doing what @Strongwoman seems able to do when most of us are at our lowest health wise, physically and mentally. I will say that others should reflect back to things they previously accomplished and draw on the legacy they represent. Old and new efforts have equal value, if more difficult to achieve. @Strongwoman has made me do that. I'm not sure I would have made the connection otherwise. So thank you.
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Good Afternoon Ladies!
What does this nice day bring to you today? For those of you out west, I am hoping the wild fires are not affecting you but if they are and you want to share how, I would be interested in finding out. Sounds like there are many in both BC and Alberta. Low in Northern Ontario from what I heard this morning. I feel for anyone going through it currently.
How is everyone this week and how are you keeping yourselves busy? I painted two easy projects this week and just picked up a third to do up for my cousin today. I snuck out to do a couple of errands and to sneak in a visit with my baby friend who's little one just turned one! When I left them, she was eating her lunch which wasn't going so well so I am glad I snuck out when I did.
I am feeling "iffy" today as I over ate a little yesterday and still paying for it today. My insides are not very happy with me that is for sure. So light and small amounts today to try and combat it. Plus an extra steroid to help open everything up in there too. Wish me luck. I did it to myself and feel so bad about it all. What do you do when you are like that and feel so hungry? Damn eh?
Well I will open it up to you to let me know what you want to talk about today. Go ahead when you are ready.
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Good afternoon ladies
Today it's windy in Montreal. @Strongwoman I didn't know about the wildfires, thanks for mentioning it. I hope the ladies out west are safe and sound xo. @Strongwoman I am sorry you are not feeling well today, boy oh boy can I relate to eating too much. Fingers crossed the extra steroid dose does the trick.
Today is a bittersweet day as one year ago today I had my surgery. I feel happy as to where I am now in this moment, but grieve and feel sadness for the woman I was that morning. It's amazing how quick a year has passed.
I haven't participated much lately for no reason in particular. I have things I'd like to say and will soon, I think about us ladies and what your days may be like. Even though we don't really know each other we connect through one major common way. @Sandi6 hopefully by now you are healed from your 7!! Biopsies and that you will qualify for the trial xo
@JoanEG best of luck on Aug 1st with the surgeon may they offer you what you want xo
@GloHo I'm trying to remember where you are at in the trial.… I know the effusion decreased, and the ca125 climbed a lot. It's quite perplexing as in my mind the decrease in effusion meant the drugs are working.. maybe they are? I need to read more about pseudo progression.
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Good morning ladies (still morning here). @Strongwoman so far we haven’t been affected by wildfires here on Vancouver Island although there is one burning just south of where I am. My daughter is still here from Saskatoon and we are still on baby watch as my granddaughter has still not had her baby. Today we are re-organizing my craft room as lately I have just let stuff pile up in there instead of putting it away where it belongs. I have changed my bedding, cleaned my bathroom, done laundry and hung it on the clothes line in spite of inky getting 5 hours sleep last night. I will be having a nap this afternoon for sure!
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@melissa A year ago today eh? I can see how that can be bittersweet in the ways you described. Mourning the person you once were versus who you are now because of everything that has happened and your journey has led you on. A tough day indeed. I know I miss the "old me" many times when I look back but then wonder where I would be too since they caught this so late in the disease process back then. Would I be the new "norm" I am now and able to do all the things I can still do? One never knows do we. Glad you can look back on yours and reflect like you have today.
No worries about not being on the forum as often. I feel it ebbs and flows as we do with what life brings us and where we are at in that moment in time. We float along as we should and interact where we can and when we can.
@JoanEG How close is the one that is burning south of you? Any smoke coming your way because of it? Hopefully not and that it all stays south and away from you. Must be quite concerning daily to see or hear what is happening with the fires. No baby yet eh? They do come when they want to come out, don't they? How is Mama doing with the waiting? Re-organizing your craft room sounds like a chore in and of itself on top of all the things you did get accomplished today. I hope you have a nice nap today as it sounds like your night was not a restful one. Let us know how things progress with the baby as it unfolds. So exciting awaiting the new arrival.
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I woke this morning taking on this new day and all it's brightness despite having to attend a funeral for a relative with a smile on my face. Soon to have that erased when my Mom texted me to inform me that one of the people I attend my Hospice group with, had passed away. I knew in my heart that they would not be coming out but by no means did I think it would happen that quickly especially after seeing him last week and conversing with him. We had on Wed picked out a blank encaustic card (cards made at Hospice and raise money for Hospice) and all signed it when we were having our lunch that day. Our coordinator had asked if myself and another lady were wanting to go up to see him that day after group and I told him that we would leave him be. He had been feeling overly tired and I thought it best to let him rest and be with his family. I still stand by what I said that day. After reading the Obit this morning, it is the day he passed from this world to the next surrounded by his wife and family spouting "I love you's" all around. It must have been a tough day for all. For this I am thankful, that he went as peacefully as he could, it is what he wanted and he is no longer in any pain. He kept up a brave front for all for such a long time it is nice to know he is now at peace. He truly inspired me to get my butt in gear and finish my temperature blanket for my youngest son because the colours were mainly purple which were his favourite colours as well. I had promised him I would show him when it was completed. Knowing he had been admitted into Hospice I felt like I didn't know how much time I had to get it done and it lit a fire to get it completed so I could complete my promise to him seeing it completed. I was able to do this, send a picture and we talked about it and how he inspired me to finish it when we had our visit last week. It lit him up knowing he had something to do with helping me to complete my project even on a minute level. You never know what will inspire you to do something or finish something just knowing that you are doing it and the reasons why is enough. We don't know how much time we have left on this earth or when our time will come. We can control what we do with that time and how we spend it. Having those little visits with those unable to get out anymore can mean the world to them. It can also lift us up knowing we are doing something that lifts them up even for a couple of hours or puts a light in their eyes that wasn't there before. Whatever it is, don't delay doing it and putting it off for tomorrow because we don't know what tomorrow brings us. I never thought I would wake this morning to find I would be mourning the death of a friend made in a group to support us all through our journeys. Some of them hit harder than others because you get a little closer or in this case, they are from the same small town I am and we know so many of the same people. Next week at the Celebration of Life will be a tough one as I face some people I haven't seen since my diagnosis and all that brings with it. Not that it is about me that day but I know it is something I will be navigating just the same. All good and the people in attendance are all good people lost in their own grief mourning the loss of their dear loved one who was so full of life to the bitter end. Reminds me to make sure I make the most of my days and continue on my path of completing my Legacy work daily as we don't know what will come or where our own journey ends. So find a purpose today and tell those loved ones you love them or give them an extra hug or kiss. It all matters in the end and the memories we instill in them and with them will be recalled fondly by them for years to come. If you haven't started any Legacy work, try a beginning and something simple and achievable. You will be surprised how easily it comes and how proud you will be when you have it finished. You will put a smile on your own face and be taking that step forward to what can seem like a mountainous journey when you look at the big picture too much. Chunk it down to smaller bits and slowly you will get there. It also brings me so much joy to know I am helping them in their grieving process when I won't be here to comfort them in their time of need. Whatever comes to me that day is what I journal about and I switch up who I am journaling to so that I don't get stagnant with it all. The biggest pieces are writing which I prefer to do alone and am getting a lot accomplished. The knitting and painting is something they see me do and watch me do but don't ask a lot of questions about. So think about your day, make an intention for it and seek it out. I must be off now to go get my Aunt for this funeral and visitation prior to. Parking is going to be a mess so the sooner I get to her the sooner we can find a spot close to the venue. I am off now and you all enjoy your day with the best of intents. Take care💕
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@Strongwoman We live on a more northern gulf island, no fires nearby. But wouldn't you know it, we have plans to visit our very old and dear friends this weekend, who live in Sooke, where the fire is nearby. It is far enough away to not be a threat, but the smoke might be if the wind turns, and my husband has asthma, so we will be keeping a close eye on it. It is very worrying to see all the fires in the interior of BC, and Jasper is just awful. It has always felt like BC to me, even though its in Alberta.
i had a tel convo with mon onc yesterday. He understood my preference to wait until after the wedding to go back on chemo as my numbers are shooting up. But he offered me a one- shot carboplatin in the middle of August which he said would not make me feel sick. So I am going with that. I hope he is right. Today is the memorial birthday get together for our friend who died three years ago now. I realised the other day that because my diagnosis came so soon after her death that I have not had the emotional space to process this significant loss. So I am going to join a grief group at our local hospice organization. Because I deserve to mourn her passing from my life, as well as my illness related losses. I think it might be healing to do so as well.I have started to take turkey tail mushroom powder. Mon onc was dismissive about it, but told me it wouldn’t hurt me as far as he knew. I started off taking Chaga, but got a bit worried about what Dr Google warned about the effect on the liver.
Its very quiet around th
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Well, cottage week is over. Such a relaxing time. So nice to spend time with hubby away from my everyday reality! We made a 2-hour stop at my sister’s on the way home…so a 12-hour travel day by the time we got home yesterday. Puppy learned how to swim and she was so tired by the end of the day, she fell asleep with the ball still in her mouth 🤣.
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@Strongwoman
Sorry to hear about your relative and your friend. Sounds like you were able to have some quality time with your friend last week. I am sure your company brightened his day. Your compassion and caring nature shines through in all you do.
Your progress on your legacy projects is incredible and inspiring. Thank you for sharing your thought process on getting going on this. I know I always need to hear it since I tend to drag my feet when it comes to really focussing on these things.1 -
@Hooodith How did the visit with your friends go yesterday? Were you able to go? How was the smoke and your hubby's asthma as a result of the smoke? It is incredible what the fires will and can do and the devastation it wreaks on nature and families alike. Shows us Mother Nature still is the boss lady.
The one time chemo session sounds promising. How do you feel about it as an "in between" as you await until after the wedding to resume any "normal" type of treatment. Sorry and sad to hear you have been unable to really mourn the passing of your friend like you should have been able to do. Joining the grief group sounds like it could be very helpful to yourself and all you mourn for your own illness and also the loss of your friend you were unable to process at the time. You are taking all the right steps to healing and that is amazing in and of itself. Big steps if you ask me because you are not only finding them but following through with them too which is the biggest step of all. Proud of you! Keep up the good work you are doing on yourself!
Good for you for initiating the turkey tail mushroom powder on your own even if your Oncologist is a bit skeptical about it all. All I know is that we don't have much on the table and it is harmless enough why not. Especially if it doesn't interfere with conventional treatments either. One never knows what will happen and what it will or won't provide for us inside and our healing journeys. Something to have faith in when we can sometimes feel there is nothing left.
Today is Sunday and the last day of the weekend in my home. Hubby has offered to take me for a walk and to get an ice cream later. He has surprised me because this is something I usually do with the kids and not him at all. But I will take what he is offering and embrace the memories we will get from it. Us waiting in line in the heat, him sweating, him commenting on how many people are there and then the walk to where the geese are all over the place. LOL Something I am used to but will be nice just the same. I think he has pulled some fish out for dinner which will be nice and hopefully my tummy will agree with it too. So far it is back to behaving itself but who knows how long it will last. I take every day for what it is and pray it accepts what I put in it gracefully and without incident. It feels good to feel good and I just pray it lasts longer and longer each time.
Whatever you get up today, enjoy it and whatever the weather brings along with it! 💕
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@GloHo Puppy learned to swim! How fun! Bet that was fun to watch. Fun to see her fall asleep each day with the ball still in her mouth like she is ready for action to play again. They are so much fun, like children seeing what they will do next and what phase they are in re: growth. Brings a juvenile aspect back to our own lives and lets us see things through a lens we forget about a lot as we are too busy adulting.
The trip home sounds like a long one and I am glad you got a nice visit in with your sister too. That must have been worth it all. Rest easy today and know that unpacking etc will be there tomorrow or the next day, take your time and get to it when you are ready to. No rush just our own imagined timelines we make up for ourselves.
Thank you for your kind words. It did mean a lot to hear him say last week that he felt enlightened that he had anything to do with helping me finish a project. Those are the things it is all about. Again, I am thankful I was able to see him when I did and that he was conversing normally at that point. I am sure the family is struggling this weekend with the grief of loss of him and all that entails. They will need each other. I heard many a time what a trooper and strong woman his wife was throughout it all and wish her nothing but healing thoughts as she mourns the death of her hubby.
As for the Legacy work and your comment, thank you as well. Reminders as to why or how to get started can be helpful. It also helps to fill my day with a sense of purpose knowing I am preparing for something far off (or I hope it is) but knowing if it is not the case I will be as prepared as I can be for them all. We can get lost in it all as we navigate our journeys and try to complete or start or Legacy work and just "live" every day for what it is and how we feel. It is a lot that we process daily and I feel we don't give ourselves enough credit for all that goes through our minds as well as the physicalities that we must navigate through too. I know you will get to your Legacy work in your own time and once you start you will be amazed at how much you will accomplish along the way.
Rest my friend from your long travel day yesterday and embrace whatever the day brings you. I am off to do a little painting next. Take care 💕
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Hi my sisters!
I am in Sooke staying with our old friends, and when I say “old” I mean it in two ways. They are in their eighties, and I have been friends with them for over fifty years. Joan began by being my 4 yr old son’s daycare provider and quickly became his second mother. Colin comes from the same part of London as I do, and we all became family. I called them my chosen family, and their extended family gradually adopted us too. J and C introduced me to my husband forty-one yrs ago on the pretext, to both of us, that they needed a fourth for bridge. They deny to this day that they were matchmaking. We got married in their beautiful old Victorian house, full of stained glass and old wood. It was like getting married in a church.
So we are doing a lot of catch up as we have not been here for a couple of years, and they cannot travel. Its a nice day down here and the fire has not impinged on us at all.1 -
Sounds beautiful and fairy tale like @Hooodith I hope you had a great visit and catch up yesterday with your friends. Sounds like you had a lot you could reminisce about. Funny to think they had a part in your meeting your partner and that it worked out. Their home sounds divine and beautiful. I love old Victorian homes myself so can imagine it vividly due to your description.
Glad the fires have not impinge on you at all and that you were able to get there to visit.
Enjoy whatever today brings.
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Thanks for sharing the puppy pictures such fun to see the ball in the mouth and sleeping, Yup ready for action.
@Hooodith Such wonderful memories with your Sooke friends. And your wedding sounds a lot like Downton Abbey backdrop.
@Strongwoman I am very sorry to hear about the loss of your hospice friend but it sounds that he was strong till the end. I hope for me and my family, that things go that way when the time comes.
My update is that I qualified for one of the medical trials and I am to start chemo on Wednesday with an overnight stay, and daily bloodwork checks. I am grateful to my sister that I can stay with her for the week. And it gives my husband a break from driving to TO everyday or staying at the Lodge. So keeping fingers crossed, hoping to keep anxiety at bay with deep breaths.
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@Bojenka
That’s great news! Which trial will you be participating in?
If I am withdrawn from the current trial, I am going to ask my Onc about Fontana. I believe that was one of the two trials you were waiting to hear about.
Do you know if your overnight stay is on the 18th floor? They are pretty lax in allowing you to wander around the hospital so you’re not stuck in the bed/room - as long as you are feeling up to it.
It’s great that you can stay with your sister! A great support for and relief to you, I’m sure. The driving back and forth can get a bit tedious, but you do what you have to do. I am so grateful for the Lodge and shuttle service.
If you have any questions, let me know.
Good luck on the trial🤞.0 -
@melissa
Just catching up after the cottage.
I have completed Cycle 6. Yes, the CA125 decrease then increased, scan results showing minor progression and the pleural effusion decrease have all been quite perplexing. I can’t tell which way this is really going.
I have a CT this Wednesday…we’ll see what it shows. My appointment with the Onc is next week so hoping the scan results are back!0 -
@GloHo Yes it is the Fontana trial I will be doing. And I am to stay on the 18th floor, thanks for the note about being able to wander about. Did you have an overnight as well ? I am a good sleeper so I hope it’s quiet and I can sleep. Usually I am wanting quick out from a hospital. And I am to return Friday for bloodwork.
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