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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From "Die Wise" by Stephen Jenkinson
"Cancer patients were---and mostly still are---armies of one, separated from the people around them by what they've seen and what's been done to them in the War on Cancer in the name of getting better, for however long they live thereafter, Lazuruses all."
"For all that, waking up each day is a gift. It is a gift that is not reward for playing by the rules. It is a gift from the Gods, giving each living person the capacity not just to go on, but to go on as if he or she has been gifted, to go on in gratitude and sonder that all the things of the world that keep them alive have continued while they slept."
From "Anxious for Nothing" by Max Lucado
"The presence of anxiety is unavoidable, the prison of anxiety is optional."
"Perceived control creates calm. Lack of control gives birth to fear. Anxiety increases as perceived control diminishes."
"There is a reason your windshield is bigger than your rearview mirror. Your future matters more than your past."
Some food for thought for all today. I refer back to my own notes on the books often and thought I would share today.
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Thank you @Strongwoman ❤️0
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@Taita
Your pics are wonderful. Thanks for sharing. I, too, have Portugal on my wish list of places to visit. Sounds wonderful!
Sorry to hear about your ascites but I want to thank you for sharing your story. This was a question that I was going to raise but you have answered a lot of the questions I think I would have had at this point.
Also, your experience with Topotecan is of interest to me as it is one of the last standard-of-care drugs my oncologist mentioned for high-grade serous. I am currently in a clinical trial, results are moving toward progression, but at least it seems to be slowing it. Not sure how much longer I will have on the trial and my next standard-of-care will be weekly Paclitaxel.
That's unfortunate about Keytruda. It is approved for endometrial and cervical. Wish they would change it to any gynecological cancer! Keytruda targets PD-1...so that would probably be another obstacle and you would probably have to test for it. In my current trial, which is Nemvaleukin Alfa + Pembrolizumab, they did test me. My PD-1 levels were very low but that did not exclude me from the trial - and they forewarned me that this may be a factor in how well I responded to this immunotherapy treatment.
Good luck at PMH!!
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@Eileen You are going through the ringer again! You must be frustrated. That pill that you spoke about, I have heard about and possibly because it may be an option for myself if needed down the road??? It doesn't matter. What does is that technology has come along so much that we HAVE something like this now. How utterly amazing. I don't think I really care too much as to the hows and whys of how it works but that it works, period. It also sounds much less evasive. How do you feel about it, should you need it?
Yes, the hospital can be a germ pit for picking things up for sure. I bet you are ready to skedaddle out of there. It may be a possibility that if they feel you are well enough and not contagious with the C. Dif that they might send you down for chemo treatment and then back up again???? How are your children doing with you being back in the hospital? Helpful, hopefully.
How are you doing yourself? You holding up okay? Need to vent any?
I am hopeful that you will not be in there for long, you get the meds you need to keep that C. Dif at bay for good and that you return home soon to your own bed and own things.
Take care and look forward to hearing from you again,1 -
I know I can call the nurse but a quick question I’m sure one of you veterans can answer. My face looks like I have a sunburn. I don’t have a fever or anything just a flushed face. They did tell me it was a “thing” but I guess I didn’t pay close enough attention. Common or?0
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@JoanEG. So sorry you had to go through that on your first chemo, but it sounds like they have it sorted now. With me they just started it off very slowly and watched me like a hawk. About four hawks actually. I have a gratitude practice. Its part of my nightly prayer routine. I find it so helpful to remember the good stuff that is in my life, and the people. I tried writing it in a notebook, but that was not as helpful for some reason. I would like to say more, but I am not sure about the acceptability ( is that a word?) of spirituality on this site. I am not wanting to persuade anyone and my spiritual path is not deified nor evangelistic, just something that is a big part of my ability to endure this cancer journey. I quite understand if its a no go though. Guidance needed @Strongwoman.1
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@JoanEG I was told the red flush is from the steroids. I get it too. Nothing to worry about.1
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Hello @JoanEG- regarding a flushed face, yes, I would say it’s quite common- I always had for the first 2-3 days of the treatment.1
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@jmbarrhaven and @Keepcalmandbreath thank you for your quick response. I’m thankful for the reassurance. Good to know I’m not turning into a tomato! 🤗0
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@Hooodith I am on it and have asked the question. I will post once I know the answer1
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@Strongwoman
Let’s talk turkey 🍄 🤣
I was at a market in London yesterday and came across a mushroom kiosk. The girl manning the booth was new but was as helpful as I need right now. The mushroom company is very reputable…not sure if same vendor as St Jacob’s. I am going to have to ask if the trial will allow. I am expecting not but thought I’d start doing some research now so I know what to look/ask for re mushrooms when I’m back to standard of care treatment. They had powder and pre-mixed tea bags consisting of 3g powder/dehydrated in a green tea base. I didn’t ask about dehydrated.I will also have to speak to my GP in relation to my blood pressure.So…was wondering…how did you decide between what you are using for tea vs capsules? What do you use to make your tea…powder, dehydrated, fresh(?). How much do you use? Is there a specific species(?) I should be looking for? Any other info that would be helpful?Did you get any pushback from your healthcare team?
Research on this topic is quite extensive and interesting.Thanks!!1 -
@GloHo You are funny! No, I have not had any push back from any of my team regarding anything I do or try. Thankfully!
Turkey tail mushrooms is what I take currently in tea form and have made a tincture. I had read lots about it a while ago and when the mushroom guy at my market (St. Jacob's) talked to me about it, it sparked my interest again. Knowing the person and where they were originating helped on deciding to pursue it. My Uncle also forages them for me.
My sister found an interesting tidbit on them. Here is the link:
https://globalnews.ca/news/10007437/fungi-frenzy-new-reasons-to-elevate-mushrooms/
I will say this, I feel that due to me being palliative, no treatment options left and my team knows I am knowledgeable helps when I discuss anything with them. They also know I take a CBD that is for Palliative patients. It freakin works too. Took away my pain that my pain meds weren't touching! As I said to them, "I have nothing to lose and everything to gain."
Let me know if you have any other questions.
Here are some pics of the mushrooms and the start of my tincture.
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@Strongwoman
I knew you’d give me some answers and some things to think about…
The guy in the article is the vendor booth I visited. So I feel good about that.Yes…we are at different places in our journey and I thank you for bringing this stuff to our attention. I am so glad you have found some things that are effective for your needs.Not sure when I will delve in…but I do know this is something I will definitely try.You know me…Why not give it a try!!Thanks. I’ll touch base if I have any other questions.0 -
@Strongwoman. Could you tell me more about the CBD you are taking? I am in so much pretty constant pain and as you know, taking short acting Dilaudid and having a hard time getting enough prescribed to allow me to be pain- free. We have a store here, but I don’t know what to ask for. If I could know what sort works and is medically reputable I would be in a better position when talking to mon onc and my NP about it. I am not considered palliative by my NP, because I am still being treated towards a remission. But I think any woman with OC is palliative because its incurable, and my pain is due to this disease. I wonder what my being palliative or not has to do with my pain management anyway. Is this just another thing about the addictiveness of opioids, and are they worried I will end up homeless on the streets, begging for small change?0
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@Hooodith Absolutley I can. My brother in law grew mine but I do know they have the same kind in stores. I will find the write up on it that my sister sent me about it.
Honest to goodness, I am not lying about last night. I almost thought I was going to have to ask for the sub cutaneous IV yo give myself shots during the day of pain meds. The CBD helped so much. I smoked mine but do know there is a cartridge you can buy that you put the bud in and it vaporizes it for you. It is probably better that way, I haven't looked into it yet
Stay tuned and I will send the write up1 -
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@Hooodith I will say this. I never in a million years prior to getting sick, would I have thought to try anything like this. Pain makes you broaden your scope of what you will look at and try. For me, anyways.1
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@Hooodith As for the pain meds, I wouldn't worry about what they think. I would think with the amount you are taking, that you would fair better on the long acting ones and end up taking less MG per day. I am not a doctor and we are all individual but I would urge you to have this discussion with your doctor/NP.1
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@Strongwoman. Thanks so much for this info. I will have the discussion.0
