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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@Fearless_Moderator yes, the left eye is scheduled for June 1 and I can’t wait!! I will hav perfect distance sight but need reading glasses which I am happy to do!!I have been on Taxol/Avastin for just over a year which is great but as we all know it r try and squeeze just a little bit more time out of it.Ascities really does affect quality of life and it is probably my own fault for delaying the paracentesis. You hope the treatment will deal with it which it always has. Hopefully they can get me in right away.@mj@mjmck21 I too carry my Ascities high. I have to add at least one 2 inch extender to my bras when it is in full bloom like now. Lots of fun!! Lol! So weird how everyone carry’s it differently.For those of you in clinical trials, it was one of my best experiences. Those folks know what they are doing and take very good care of you. Good luck!!!1
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I finally got the iPad I was hinting for on my birthday, but as you can see, I am struggling with using it. Was trying to paste a pic of the teal sisters at the lady ball…and I can’t get it to paste!!
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@Fearless_Moderator
🤣🤣 So glad you can sleep through them. I understand about the co-mingling yuckiness.
My son has been donating his blood every three months for years. To be honest, I don't think I've ever expressed my appreciation for his generosity...guess I better get on that one!0 -
@taita wishing you good luck with the second cataract surgery and getting the acities under control. Gosh I didn't realize they could be that uncomfortable. They did mention two very small ones in a scan I had about six months ago but by the time I got to ultrasound them for more detail they'd disappeared and have yet to reappear, thankfully.
@gloho what are the blood work items used to measure liver function. I watch my creatanine and GFR for my kidneys that are problematic (I live with them at stage 4 which means I function at about 25%) but understand one of my tumors may have attached to the liver. I'd love to know which blood tests are ones that indicate any issues with the liver and get ahead of waiting for scans.0 -
Oops. already 205. Don't know where the time went. Good luck with this week everyone and hope to see you back next week.
Thanks for joining us today and keeping up a lively discussion. Until next week...stay strong, stay positive and may the good weather keep that smile on your face!Hugs to all
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@Fearless_Moderator i know that one lol. Your alt,ast, ggt, alp. I normally keep a clise eye on mine. As my ggt has been known to go as high as over 4001
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@Fearless_Moderator
This is new to me, so just grabbed a list from a website...the highlighted ones are the ones that were affected for me.
Alanine transaminase (ALT). ALT is an enzyme found in the liver that helps convert proteins into energy for the liver cells. When the liver is damaged, ALT is released into the bloodstream and levels increase.
Aspartate transaminase (AST). AST is an enzyme that helps metabolize amino acids. Like ALT, AST is normally present in blood at low levels. An increase in AST levels may indicate liver damage, disease or muscle damage.
Alkaline phosphatase (ALP). ALP is an enzyme found in the liver and bone and is important for breaking down proteins. Higher-than-normal levels of ALP may indicate liver damage or disease, such as a blocked bile duct, or certain bone diseases.
Albumin and total protein. Albumin is one of several proteins made in the liver. Your body needs these proteins to fight infections and to perform other functions. Lower-than-normal levels of albumin and total protein may indicate liver damage or disease.
Bilirubin. Bilirubin is a substance produced during the normal breakdown of red blood cells. Bilirubin passes through the liver and is excreted in stool. Elevated levels of bilirubin (jaundice) might indicate liver damage or disease or certain types of anemia.
Gamma-glutamyltransferase (GGT). GGT is an enzyme in the blood. Higher-than-normal levels may indicate liver or bile duct damage.
L-lactate dehydrogenase (LD). LD is an enzyme found in the liver. Elevated levels may indicate liver damage but can be elevated in many other disorders.
Prothrombin time (PT). PT is the time it takes your blood to clot. Increased PT may indicate liver damage but can also be elevated if you're taking certain blood-thinning drugs, such as warfarin.0 -
Just noticed that my neutrophils have dropped significantly from one day to the next, now just below norm. I'll have to get on that one with them too. The two-week break should bring them back up again, but not sure what's going to happen over an entire five-day infusion week.0
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Have a great week everyone my prayers and thoughts to all of you0
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Sorry I missed chat again this Thursday. Always on chemo day.
My chemo was cancelled because of hand and foot syndrome and high BP.
I get there and did not think there would be a problem with BP but I was surprised the onc. decides to postpone treatment. I find out next week whats going on.Delays, delays and its summer soon. There goes my whole summer into Fall.
I hope everyone here is doing good. I have not heard from Strong Woman and my thoughts are with her.
Have a great long weekend!
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@babs272
Sorry to hear you are dealing with HFS and high BP. I went through the same thing on that drug combo. Sending cool and soothing thoughts your way.
For HFS, I usually started my day with ice baths for both my hands and feet and went to bed with ice packs for both. More of the same throughout the day. I had it extremely badly,
For blood pressure, I learned that drug-induced high BP cannot be resolved with lifestyle changes - believe me, I tried. Your BP may resolve when you stop taking Avastin (the culprit!). I never got to that point because I was starting a trial and needed to be certain my BP was in the normal range - so I stayed on them for that reason. My blood pressure is lower than my normal rate, but still in the normal range. My advice would be to get an appointment with your GP as soon as possible and get meds to get it under control - especially if you are experiencing delays as a result of high BP! I also worked out a schedule with my GP (appointments and telephone calls) where I could report on progress by the timeliness we discussed for the meds to take effect, and get new meds if the first ones didn't work - which turned out to be the case for me. I found the meds that worked within a week - thanks to my GP being so flexible and accommodating for my needs. You may have to go through other dosage or med changes to get something that works for you. This will be much easier and efficient for you if you have a BP monitor at home.
Hope this helps. Let me know if you have any other questions.0 -
Thankyou for the feedback. The Doc did increase my BP meds 14 days ago. It was fine at home the readings but when I got to the chemo room, it went too high
I hope to talk to my dr next week before I talk to the onc. I lost my enery this week and started taking naps in the afternoon. The heat we have here in BC is not helping and the smoke from fires is drifting down here.
Thanks for taking the time to talk to me. It helps. Barb0 -
@babs272
Hi. Sounds like you are in a little bit of a funk and feeling overwhelmed because everything is happening all at once.
You are doing everything right! If my BP was a little high when I first arrived for chemo, the nurses would let me sit for a while and then take another reading. Usually did the trick. I know as I progressed through treatment I started to get chemo-related anxiety. Not that I was worried about chemo or had problems with it, just the thought of another chemo!! It wears you down at times.
I took a look back at my notes while on Caelyx/Avastin and noticed that I started to get tired and needed afternoon naps into my third cycle. So, as is the norm while we are on treatment, I had to reassess my reality and plan accordingly.
The delays can be hard to deal with and sometimes just downright devastating! I found the delays especially difficult because they were unexpected and something I could not control (usually my neutrophils and platelets). It is something that we all have to find a way to navigate through. There may have been nothing I could do to improve my blood counts, but I sure as heck wasn't going to stop everything and usually tried to plan something special with my husband for those "bonus" weeks (within whatever boundaries my body allowed at the time). "I'm free this week - let's do this!!"
I hear you about summer! I am not a winter person and look forward to those warm summer days! I know I am not as heat-tolerant as I once was (I put that one down to aging!) and you have the added limitations of the smoke to deal with - making even your gardening a difficult task. Make a list of the things you want to see and do this summer that can occur at any time on a "flexible" schedule. That way, those boohoo delays turn into something that you are looking forward to doing! For me, the week of chemo is usually when the effects of the previous treatment have subsided and I am feeling stronger...a perfect time to do something special with that unexpected time off treatment. And don't forget to take care of YOU...perhaps a spa day or take a few days for a short spa retreat?
How about planning a vacation to take your mind off of the present and into the future? Somewhere you want to visit that is not restricted by the time of year or plan a couple of totally different vacations and see where you land depending on when your treatment ends or the Dr suggests a chemo vacation! COVID threw a wrench into any potential vacation planning for me, and I have been very hesitant to travel because of Covid. I have heard so many wonderful stories about the travels of others that I cannot stand it any longer, I am ready to start planning!
I am normally a positive person, but I have had my share of ups and downs, crying, and pity parties! All normal...all releases of the anxiety and uncertainty this disease brings upon us. Every day I am thankful that treatment is available. I count my blessings and am grateful for the love and support that surround me throughout this journey. I have to do the best I can do each day. I have to be the best I can be each day.
I know this journey is tough with so many difficult decisions. You have taken the time to explore your feelings around each option as they were presented to you and made decisions that were only yours to make. You have proven to be a strong and resilient woman! I'm sure you'll find your groove again...and be ready for all the exciting things you want to see and do this summer. Maybe time with the grandkids is what you need?
Sending positive thoughts and vibes your way...1 -
You are such a sweet lady. Thankyou for your kind messages.
I do spend alot of time with some of my grandkids that live close. They do help me stay positive.
My oldest will be 12 in July and she loves staying here, I think its to get away from her brother .LOL
I made my Dr appt for Wed and Onc on Friday.I can,t go up anymore on my meds, but the red feet is an issue to resolve before Chemo again.I can barely walk. Last night I did have a decent sleep after taking a gravol . The nurse said gravol could help you sleep, and it did.
Another nice hot day out there and the cotton is blowing like snow out there.Allergies and dealing with smoke in the air soon. Oh well, I will get thru this. LOl
Have a great day, Barb0 -
HELLO MY FRIENDS, AND WELCOME TO TODAYS' ONLINE LIVE CHAT.
Wow, May 25th already and heading into June. Weather here is fabulous today....worthy of a good book and comfy chair on the deck.Not to belabor anything, let's just get at it. Say hello and do tell us what' s on your mind.
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Hi. A little chilly here, but the sun is shining!!
@babs272 Just wondering how you are doing with the hand and foot syndrome. How are you feeling? I believe you saw your oncologist yesterday. How did it go?
I have been busy with oncologist appointments and blood work (lots!) to determine next steps for the trial. I am happy to report that my liver enzymes have descreased significantly and I still have a couple of dates with the vampires coming up next week...so we're keeping an eye on any new developments. At this point, the plan is to move forward with a reduced dose of the trial drug and to keep Keytruda as is. So, we'll see how it goes for Cycle 2.1 -
Glad to see you back today, @GloHo. Your post reminded me of the times I've been on clinical trials and studies. Some days I couldn't believe I had that much blood in me. Often felt tapped like a maple tree for its syrup LOL.
Really appreciate you keeping us all informed on your trial and we all wish you well with it.0 -
Well the sun is beautiful here but the wind is CHILLY!!! Tuesday was the beginning of my next cycle Taxol/Avastin and as usual it went well. I have had a couple of partial bowel obstructions (yuk) and all clear for now. Back to low fibre little meals which I don’t mind except for all the amazing fruits and veggies to look forward to this summer. CA125 results came in today. 588 to 944. Disappointing but not surprising. We are going to do the next CT a couple of weeks early so June 26 is the day. On a happy note I picked out a new summer wig and a couple of caps yesterday so all set! On a very happy note we have a new gardener in the family complete with gloves!! ❤️
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@Taita, love the new gardener. Does she charge much ?LOL. Seriously though, it's great getting the little ones interest in plants and how they grow at an early age. I have fond memories of planting tomatoes and green beans in our backyard garden when I was little.
I think I"m in the middle of a bowel obstruction. Day 5 and no action but I'm not nauseous or vomiting, no pain, no fever, none of the other symptoms that will send me skyrocketing to the ER. But nothing seems to work. I'm taking 4 Senekot at night, a cap of Restorolax in OJ in the morning and just started on one Dexamethazone in the morning that my oncologist prescribed yesterday. This is all very new to me so anyone that has any tricks up their sleeve to get some action happening would be welcomed.
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@Fearless_Moderator @Taita
My meds could go either way and I have been feeling a bit bloated lately. I have a hard time determining whether it's a slow moving bowel or the drugs doing something. I err on the side of caution and assume it's the bowels and take Senokot in the evening. I usually take one and I have some movement the next day, but I'm not sure it's enough. I just looked up low-fibre stuff (do's and don'ts)...I sure hope the Senokot works!! It seems that you have to cut out a lot of things that are not only tasty but are good for you. I would also be interested in hearing more on this subject.0 -
Gotta sign out early...have to run to Costco. I will catch up when I get back later this afternoon. Have a great chat!0
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@Fearless_Moderator sounds like you are doing everything right and then some!! The things we have to put up with! Good thing we all have somewhat of a sense of humour through all of this.0
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Have a great weekend everyone. I have to sign off for this week and @Fearless_Moderator I hope things start “moving” for you. @Fearless_Moderator
@GloHo it is so hard to tell the difference sometimes and I am not sure we are always right in the diagnosis but we do whatever we can to be more comfortable! I find laying down on my back on the bed and relaxing or meditating and then gently, very gently pushing on my abdomen and massaging does seem to sometimes move things around and I get release. My GP recommended it to put my hernia back in and she said the “relax” is the most important part. Good luck!0
