Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. 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 Peer Support Volunteer. 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).
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@GloHo. I seem to remember them giving me Dex in the IV, but I can’t be sure. We had the same prob with one of the anti nausea pills and they just went to their cancer clinic pharmacy and got one. I can’t imagine them not having Dex, it's such a common drug. Does it expire quickly?
Sorry to hear about the trial, must be disappointing for you. Best wishes for the Paclitaxel.0 -
@GloHo what @Hooodith said! You should be able to get it at the cc pharmacy!
I had a meet with a sub for the onc who will be taking over my chemo here in Duncan. I’m now scheduled for round number 2 locally on Nov. 27th, yay!I wanted to share a poem that I just read by one of my favourite authors. It’s about hope. It’s called The Cloak by Becky Helmsley. ❤️
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@Strongwoman Sorry to hear about the clinical trial…hope all goes well with the chemo. I will be thinking about you
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@Strongwoman
Well that was easy!! Spoke to nursing triage. It looks like I do not need oral Dex…it has been ordered for me to get at chemo time…so IV. Glad I got that sorted out.My husband and two boys are headed to Detroit for a football game this weekend. They will come here and sleep over in order to cut drive time tomorrow. So I’ll get to be with them for the evening and then I will have the whole house to myself for the weekend!! Quality quiet time!!1 -
@Hooodith @JoanEG @Sylviequebecbc Thanks for your well wishes. Looks like Dex via IV so all is settled.1
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@Strongwoman - so beautifully said! I am making the same deal with my body!! 🤷♀️❤️0
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@Strongwoman
Thinking about you this week as you move through your tests, results and decisions. Sending good vibes your way.0 -
Thank you @GloHo I am prepared no matter what happens. I attendee my niece's wedding and spent a week at my parents. Whatever falls after that, just is. I will keep you posted. I get bloodwork done tomorrow and f/u appt with Oncologist Thurs afternoon. Agreements we make with ourselves/bodies helps one to get through things. 1
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Well, Monday was a whirlwind of giving blood! Not only did my oncologist need bloodwork to move forward with weekly Paclitaxel, but the trial required end-of-trial blood, urine and an ECG, and BIODIVA required blood because I am changing treatments.
I was also invited to complete a survey on Cannabis use. Looks interesting and I will complete the survey in the next couple of days. I see there's a medical marijuana discussion...I will include further posts regarding the survey, etc., under that discussion.
More details on the above two items are available in my clinical trials post.
While speaking to my oncologist yesterday, I again mentioned turkey tail mushroom therapy. I'm not giving up on this one. Now, I have to say that I do owe her an apology. As I was going on about the research I have done on turkey tail mushrooms, she tried to interject about her bad experience with a patient using supplemental/alternative therapy. Because I was in the middle of talking to her about what was on my mind, I did not stop to hear her out. This was inconsiderate on my part and I realize that listening to her about this experience will provide me with details on what happened, what supplemental therapy was involved, why she is so hesitant to consider this alternative, and how I may need to approach further discussions on the subject. This is not a situation I would have been in pre-cancer. I find that part of my personality has changed due to all the self-advocating, pushing for the things I need/want, having to change/limit the way I do things in all areas of my life, and all the ups and downs throughout this journey, have really played a number on my brain (not to mention chemobrain). I think it's the process of putting myself first which has been a difficult transition and probably is for most after being the nurturing wife/mother my entire life. I don't know if that makes sense, but I am certainly a different person since diagnosis and treatment.
WEEKLY PACLITAXEL
I was surprised by my CA125 result in that it did not rise as much as I had feared it would. However, it was in line with my last few results during the trial, so I should have expected it. The next CA125 test in three weeks will be more indicative of how my cancer is progressing and/or how the Paclitaxel is working.
My weight is still fluctuating and has been trending down gradually. I can afford to lose a few pounds so I am not overly concerned at this point but am keeping a close eye on things. My diet has also changed a bit in that I am not eating/snacking as much in the evening and find my lunch choices have been of the healthy variety lately 😊.
I had my first treatment yesterday. I asked my doctor to replace the Benadryl with Chlorpheniramine. When I got to the chair, I discovered that they were going to give me two chlorpheniramines. When I asked the nurse if I could take only one, she indicated that I didn't have to take anything - they cannot force me to take the pre-meds. I would never opt to not take pre-meds because they are a safety net and are prescribed for a reason. So, we discussed it and because I had no previous adverse reaction to Paclitaxel, and, if anything did happen, they would IV Benadryl immediately, I decided to take only one. I was given Dex via IV and do not have to do the 6-hr/12-hr oral doses. All went well.
At my next two treatments, the chemo unit will do my bloodwork and I will see an oncologist to review the results and get approval to move forward with that day's treatment. Since I am receiving weekly Paclitaxel, the dose is reduced and everyone has indicated that it is well tolerated. It is my hope I will not have the same issues with platelets and neutrophils that I experienced with carbo/paclitaxel which caused delays in treatment. In speaking with my oncologist about this, she indicated that if this happened there would be a dose reduction. I asked her if other interventions could be employed before a dose reduction was implemented. I believe that is a possibility. We will deal with it when the time comes.
I will see my oncologist every three weeks for a follow-up with bloodwork (including a CA125 test) and I will be getting a CT scan approximately every six weeks.
Now I wait to see what, if any, side effects I may experience with this line of treatment. So far no nausea or fever. Thanks to Dex, I did have an increased appetite last night! I am assuming that side effects will be cumulative, but with the reduced dose it may take longer to get to that point. I also think it's time for a haircut before thinning/loss starts.
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I just found a discussion from 2019 “Complementary & Alternative Medicine”. I haven’t done a deep dive into the links yet but found that although the links were posted a few years ago, most link to a current website so info is pretty up-to-date. It has a few interesting links on the subject and would be great for anyone exploring the use of medicinal herbs, plants and other meds. This includes things that we use in our daily lives (garlic, ginger, green tea, etc.). I have to admit that I knew these things had beneficial effects on our health but never considered them as medicinal that also come with precautions. I am going to continue my turkey tail mushroom explorations on this thread to try to keep this discussion going.So if anyone is interested, check it out and add to it if you find some helpful articles or sites to share on the subject. The more specific info we have, the more control we have over our own health care.1
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I just found my perfect lunch! Since my home chef was away for the weekend, I found myself at our local Metro grocery store trying to figure out what I could make for myself 😂. Our Metro caters to a large retired/elderly community and carries two-person meat selections and I found some mushrooms stuffed with Italian sausage. You can get button mushrooms (7-8 in a pack) or Portobello (2 in a pack). I prefer the button mushroom to sausage ratio and can get two meals out of the pack. Add a side salad for lunch or top off a pasta dish with these morsels for dinner. Heck, make a Western omelet with these as a side for breakfast! They do take 45 minutes to bake but well worth it! I also noticed some mini peppers stuffed with Italian sausage and may pick those up next time...mix and match...yummy. As you may have guessed, I don't enjoy cooking - so easy-peasy is my style. My husband is home now...phew!1
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Oh @GloHo You are so funny! Sounded like your hubby was away for awhile then by the end of your message, poof, he's back.
Enjoy your lunch I sounds wonderful.
Not everyone enjoys cooking. I get it and no matter what, there are times that food prepared by someone else and cleaned up by someone IS better.1 -
@Strongwoman
Haha!! He left Saturday morning and was back Monday afternoon. We were thinking that in the 46 years we’ve been married, this is the first time he’s been out of the country without me!! He went to Detroit for a football game with our sons. So glad he got away. I think it was especially good since having to deal with my diagnosis and treatments for the last 4 1/2 years. It was also good at my end…some alone time was relaxing for me and I didn’t even waste time dwelling on things!!1 -
My husband has become a cook. And the kitchen is so clean and organized. I am not allowed to move anything. Unless I tell him where it is right away. He is a bit OCD. But I always hated cooking, so I don’t mind at all. The only prob is when I have no appetite and only want soup. He gets concerned. At the moment I am on a gluten- free, lactose- free diet. It is helping my gut problem a lot. He makes me gluten - free bread and scones. But he is good at anything that requires hand dexterity and organization. And he really likes it when I have the stamina to do the dishes.I had my stent replaced yesterday, and I think it really needed replacing. Day surgery, so I got home and slept very well. I am now on long acting Dilaudid and it is working well for my pain level.My daughter works for, practically manages Hemp BC In Vancouver. For the last 30 yrs they have been at the forefront of decriminalization. Now its legal, the govt is trying to put them out of business. ( as they’ve been trying to do for thirty years lol) Anyway, I asked her about a certain kind of pain relief CBD and she says its hard to find but she will keep looking for me.I drink a lot of cold green tea, mixed with coconut water and stevia. I hope it isn’t a problem. Maybe I will ask them next Monday when I have my next chemo. They are reducing my dosage as last time it took two weeks to recover from. I too am getting more pushy. I said to my oncologist that my body was not going to tolerate it any more. After all, its 77 and I need to be nice to it. He didn’t seem too bothered.Lovely poem, @JoanEG. Thank you.1
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@Hooodith
It’s wonderful that your husband learned and does gluten-free baking for you. How lucky you are! I hear you about kitchen space. I try to stay out of the kitchen while he’s in there prepping too. And the portion sizes…I have to remind him to let me serve myself because he just piles it on! When I had appetite issues (not nausea…just didn’t feel like eating) at the beginning of my treatment, I found that taking one anti-nausea med when l felt a loss of appetite cleared it up within half an hour and I was able to enjoy a regular meal.So glad to hear your stent replacement went well and you’ve found a pain relief resolution. I hope your daughter can get her hands on the CBD you’re looking for. I recently did a marijuana survey being conducted by one of the oncologists at my hospital. It looks like they are trying to remove the stigma and open the Dr/patient conversation.I, too, have introduced green tea into my daily routine. I usually just have one cup of the pre-mixed Tetley green tea/lemon/honey.I hope the dose reduction works for you. Nothing worse than getting psyched and feeling ready for our next treatment only to find out our bodies are not cooperating and have to delay. We are asking so much of our bodies. Good for you for listening and being kind to yours.0 -
Good Afternoon!
How is everyone today? I enjoyed my time away at my parents and came home on Sunday. Uggh then back to reality. As my youngest son said, "everything falls apart when you are not here." Tug on the ol heart strings he does.
I did my bloodwork yesterday and after our chat today, I am off to the Oncologist to obtain the results. Wish me luck!
The floor is open and I am here, what is on our minds today, where do you want the discussion to go and how can we be of assistance to anyone?
Let us know who is here today.....2 -
I have finished my second round of Topecan Friday, and had 7.5 litres of Ascities drained Monday after the 5.5 litres a week earlier. Needless to say this has been a very rough couple of weeks. The Nausea and vomiting have not been fun and aooooo tired. Very dehydrated and dealing with that too. Better days aheadnnnHad a visit with my PMH doctor Tuesday who did my clinical trial for any brilliant ideas because I am coming to the end of my treatment options. She has said that even though I am platinum resistant it was 3.5 years ago and wants me to try it again. So we will see. Hoping I feel better this weekend to help decorate the kids tree.Last week end was my 66th birthday and I was just not up to it. However our youngest granddaughter offered to eat my cake for me. She said she was sharing it. 🤣
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@Taita You are having a tough go this week for sure. How are you doing emotionally? I know when I am overtired/not sleeping, I get very emotional. What have they suggested for the dehydration? Curious as to what might be suggested so I can add it to my arsenal.
The suggestion of the PMH Oncologist having more chemo, what do you think about that and are you feeling up to it? Tough decisions for sure and I feel for you.
The cake is beautiful and your granddaughter looks like she loves the cake both in beauty and to eat it!1 -
@Strongwoman on an emotional level I think I am just exhausted. Today is the best day I have had in 10 and hope I can keep improving. Normally I would have an infusion of saline for the dehydration but because of the Ascites we are trying to avoid it. I do think my ascites is slowing down in the last few days 🤞🤞Gatorade and popsicles supplement my water. I have lost 20 lbs and need to gain it back so eating small meals of high protein/calcium food. My daughter made me an amazing homemade macaroni and cheese with tons of goodness in it. I will be ready to take on the next treatment when it comes. Any other option isn’t an option for me. 💪1
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@Taita Thank you for sharing as you navigate this tough spot in your journey. I am happy that today seems to be a good day and that it keeps improving slightly every day. Rest of course, but you know that already.
Losing weight is the tough one. Whether it be in or out of treatment, it is more difficult to deal with than the weight gain that can occur. I, myself, find it more difficult in my headspace to accept weight loss than weight gain. That is me though. I think it is this for myself: weight loss=downhill in the battle therefore weight gain=in the battle and moving forward
Does that make sense to you or anyone?
You are in a good place to make that decision and have decided that no treatment is NOT an option. I will be looking forward to being there for you in your next treatment cycle to support you.
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Okay ladies it is 2pm and I am heading off to my appt shortly. Continue chatting anytime on this thread. It is great to see the communication and updates from all
Take care!2 -
@Strongwoman
Good luck with your results. I know you are ready whichever way it goes…sending positive vibes your way.1 -
@Taita
Your granddaughter is such a sweetie. She looks absolutely enthralled with that beautiful cake.Geez…sorry to hear you’re struggles with Topotecan and your ascites. I just started weekly Paclitaxel…Gem next…then Topotecan. Thank you for sharing, I really appreciate it. That is very interesting news from PMH. When I recently asked my oncologist about doing that, she basically just said it wouldn’t be done because I am platinum resistant. So…I am interested in seeing if she will reconsider rechallenging carbo/Paclitaxel when I mention that her former colleagues at PMH may go that route. She used to work there and I know she often consults with them. Because I had over a year with NED, my time since last CP infusion is a bit shorter but if I have to go through these other meds first…that will extend the window a bit more since last infusion. Fingers crossed that they will rechallenge for you. And good on you for self-advocating and pushing for additional options.Thinking of you and sending strength through the airwaves to help speed up your continued improvement.2 -
@Taita
FYI…I have been trying to research rechallenging scenarios and there is some stuff out there. I just haven’t had the focus to go through the myriad of journals and med talk to find something that I can put in front of my oncologist. I will continue to dig and hope to find something…anything just to support the option! Again..thank you so much for sharing.2 -
@GloHo thanks for sharing this. My local oncologist said the same thing to me about going back to platinum, so who knows. Maybe a new way of thinking.Weekly Taxol was fairly easy for me. I had it with Avastin for a year. The Gemcitabine was so easy, unfortunately it didn’t work at all. I know people who don’t have issues with Topoecan As we always say this is a disease of one. Good luck! This is why this forum is so important. I also asked about Keytruda as off label. We will continue that conversation when the time comes. Have a great weekend.1
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Hi Everyone, you are all so brave, and determined with the treatments, no matter what they do or take from you. I guess that goes for me too. Sometimes ( but not today, today is a good day) I get despondent and I can’t see the light, and I think everything is dark and I get defeatist. That is when I pull out this poem, written in the 19th century, with a war-like symbolism. And the perfect reference to the incoming tide and dawn light. It never fails to remind me that I cannot see everything that is going on, and not to give up hope.
Hope you find it as inspiring as I do.
Say Not The Struggle Naught Availeth
by. Arthur Hugh Clough
Say not the struggle naught availeth,
The labour and the wounds are vain
The enemy faints not, nor faileth,
And as things have been, they remain.If hopes were dupes, fears may be liars;
It may be, in yon smoke concealed,
Your comrades chase e’en now the fliers
And, but for you, possess the field.
For while the tired waves, vainly breaking
Seem here no painful inch to gain,
Far back through creeks and inlets making,
Comes silent, flooding in, the main.
And not by Eastern windows only,
When daylight comes, comes in the light.
In front the sun climbs slow, how slowly,
But Westward, look, the land is bright.0 -
What a powerful poem @Hooodith.
Thank you for sharing.
It has been said before and I will say it again, It's okay to not be okay.
Thank you for being brave and sharing even when you aren't "feeling it". It is a tough go and am thankful daily for this forum and all the strength and knowledge that can be shared here. One never knows what little nugget will help someone in some way.
Your day is almost done and a new one will begin. I wish it is slightly better than today and same for every day after that.
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