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Thanks. Yes me too. I will post what I find out once I am in touch with someone and can get some answers. It's one of my goals today is to make contact with one of the three places I contacted via email. From what I read, they believe it is too much Chi that is the root cause. Instead of chasing articles I read, I thought it best to seek someone out who does it and have it tailored to me and my specific case. I tried a cancer Naturopath at the beginning of my diagnosis and she was great. We decided that when I recurred it was time for me to return to my conventional team for more help. I respect that and why I chose her as she worked directly with my team from the beginning not against them. That I like and there should be more of. I have always found my body likes the more eastern medicines better than western which I usually react to in negative ways. I think we have come a long, long way in western medicine but there is a way to find a balance between the two….they just have to work with each other and find a way.
Thanks for all the support and I will definitely keep you in the loop @GloHo
How are you doing with your treatments?
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@strongwoman Yes the site would be a starting point for more in-depth research for sure if anyone is interested. I run everything by scientifc sites like Pubmed and look at actual studies. The only time I take reviews at face value is if I know the person and have seen the results for myself. But I do take a leap of faith sometimes. I read some research that THC/CBD may help in some cancer cases and that it is now being studied by scientific researchers. I couldn't find anything for my particular cancer but I read encouraging studies and I had talked to people who found it helpful (people I trusted). I decided to use the formula in suppository form to avoid any THC highs and my CT scan showed some shrinkage in the tumors and my CA-125 went down from stuck for weeks in the mid 100's to below 80 and that is the only change I made so I credit them with helping me. I do suggest them to people because I believe that they worked for me - but to also look for some studies for their cancer type and any contraindications before going ahead. Much like the Chinese Traditional Medicine - we have to do our research. Good reminder for everyone, thank you.
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@Lorraine5845 wrote:
back to the hospital I went on April 12. My calcium was thru the roof at 4.35 which causes all sorts of issues and not ready to go home. I have low blood pressure, my electrolytes too low. I don’t know if the immunotherapy did a number to my body but with only 5 treatments wasn’t worth
@GloHo wrote:
Sorry to hear you are back in hospital due to blood counts. It is impossible to predict how we will react to our treatment drugs. I was on immunotherapy earlier this year (a trial) and it affected my liver enzymes. It stopped working and I did weekly Paclitaxel until it stopped working. I am again in an immunotherapy trial…we will see how it goes.
Has your team been able to tell you why these counts are whacky? Do they attribute it the immunotherapy? Is there something you can do to resolve the counts? What type of issues are you experiencing?
I think this would be great info to share on Teal Thursdays. If you want me to put it on Teal Thursdays, I can do a cut and paste. I am heading to Toronto right now so it would be later this afternoon when I could help you out.
Let me know.@Lorraine5845 wrote:
You can repost I don’t mind.
I’m hopefully going home tomorrow but all it takes is another thing going wrong with bloods.
@GloHo wrote:
Glad to hear you are hopefully heading home tomorrow 🤞. How are you feeling? Ready to go home? What types of issues were you experiencing as a result of your blood counts that made it necessary for the hospital visit?
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Trial is going fine. Tomorrow is Cycle 1 Day 15…just blood work. I will post something in clinical trials soon…I like to post by Cycle…especially if I am tolerating the drug well. Cycle 2 begins next week with another infusion. So far no side effects.
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Has anyone experienced lack of interest in a food they used to like? I used to love eggs for breakfast and I used to keep hard boiled eggs on hand during infusion week as a quick and easy breakfast. For some reason, the last time I tried hard boiled eggs I could not finish them without feeling nauseous. I thought maybe it was an off day but then my hubby made me an egg sandwich about a week later and the same thing happened. I have not lost my appetite…just my interest in eggs. Is this weird or normal or just me? 🤣🤣
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Interesting!
I did a survey for a Dr at my cancer clinic a while back. Made me think that this is an up and coming therapy that will be accepted more readily by the medical community.
I have not investigated use myself, I am naive enough to think that it would just be used for pain. However, your report has me intrigued and I will start researching now. Since I am in a trial, I am definitely not allowed to use right now. But depending on what I find in research, I will definitely speak to my Onc about it when I’m back on standard of care.
Thanks for sharing.1 -
@Gloho - great about the possibility of using THC/CBD! Some docs are not open to different treatments outside the box. I told mine it's my body and they've told me I had months - what do I have to lose really. Of course check for your cell type - talk to people too. It's not cheap and it's not guaranteed to work. About the eggs - yes, I cannot stomach certain smells. The taste of some things is 'off' too - especially red meat (which I was cutting out of my diet almost 100% anyway). I got the same reaction to pulled pork last time I tried it and I used to love it. The sauce smell made my stomach react. It all is normal on chemo from what I've read.
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Thanks for responding. I hadn’t bothered to do the research on it. I figured it was related in some way. I hope I don’t develop any more dislikes!!
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I will definitely do the research on THC/CBD!! Thanks.
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Here I go again! If you look really close at the photo you will see that my hair has just started to grow back… oh the irony! Round one of two begins! 😆
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It may not be as bad as you’re thinking! When my hair started to grow back, it slowed but didn’t re-fall out when I had delays that took me to the four or five week mark (1st line = 6 treatments) and when I had 2nd line (11 treatments) it fell out but when it started growing back, it was just a bit slower. I’m not sure if what I experienced is ‘normal’ or unique to me. Here’s hoping your stop treatment for surgery will not interfere with you getting your locks back.🤞
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I just got some interesting news!! They have started construction for the hospice in our town and the expected date of completion is summer 2025! So, with this clinical trial and two standard of care treatments remaining…I’m hoping that these treatments will slow progression so I will be able to hang on until then (or longer, of course) 🤞. It would make it so much easier for my husband, too. I will continue my positive thinking and hope for the best. I will also have to touch base with my GP and Onc about wanting to go to this facility (plan ahead!). I have already opened the lines of communication with the Admin Assistant at the facility by inquiring about construction and support groups. Now…patience and see how it all comes together 🤣🤣.
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@GloHo what great news about the hospice facility being built in your town! We have one here that was built only a few years ago and it is my wish to spend my final days there. I am a member of the local hospice society, assisted with fundraising and have taken several valuable courses about advanced care planning through them. I also have several close friends who volunteer there and my Nextdoor neighbour works there as an administrator so I’m hoping that my “connections” will sister me in get placed there when the time comes. Bravo for getting ahead of the game!
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@GloHo ah yes who knows what the future may hold. We hope for the best and plan for the rest. My husband had a plan in place. He had elected MAID for the time when his quality of life became unbearable however he passed away from a nose bleed! Go figure! He got a nose bleed that they couldn’t stop due to the Xarelto blood thinner he was on. There is no antidote. There was no ENT specialist in Duncan so they shipped him by ambulance to Nanaimo where they did emergency surgery to cauterize it but that didn’t work. He aspirated so much blood and his lungs were so full of cancer he basically drowned. It was messy and horrible and it shouldn’t have had to be that way. If they had listened to him in the morning when he told his nurse he had a nose bleed they shouldn’t have given him the Xarelto right after. It takes 24 hours to leave your system. They could have got the blood to clot if he hadn’t taken it. Ugh sorry I turned your post into my horror story! I’m proud of you for taking steps to plan for what lies ahead. 🤗
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First, I’m so sorry to hear about your husband’s cause of death. It must have been so confusing and devastating and I can’t imagine losing someone in that way.
I do thank you for sharing because it reminds me that it is often a complication that has arisen as opposed to the cancer itself. It is one of those things that you cannot plan for but it serves as a reminder to include some “what if” scenarios in my planning strategy.
Thinking of you and sending hugs.1 -
good afternoon All
I am here…just a little late from doing errands. How is everyone today?0 -
@Strongwoman still morning here! I’m having a great day. The sun is shining and I’m getting stuff done (thanks dexmethasone). I had chemo yesterday it went well except I also had to have a magnesium infusion which created a problem with the original IB site so they had to stick me again. It’s getting harder all the time to find a good vein. It also meant a very long day in the chair. Started at 9:30 and wasn’t done until 5. My butt was sore so today I am going to order a butt cushion so I have it for next cycle!
My GP who has also become a friend over the years is coming for a social visit today. We haven’t seen each other in person for awhile although we speak on the phone at least once a week for the medical stuff.0 -
Yes, @Belladonna, there is some more research being done into THC/CBD use with cancer patients in general. I know I just filled in a questionnaire for that very thing from a link on our site/forum here. I have been using it off/on throughout my own journey. I have someone who has given me some specific for palliative patients. It seems to help with the generalities of it including nausea, soreness, pain etc. There was another they gave me which was another CBD only (both of these are) that more so helped with nausea very quickly. I have used some THC when the pain has gotten worse and so as to not increase my pain meds, cause constipation and go round and round in a circle. It has helped and does not cause me any GI issues. It is whatever people's comfort level and knowledge in it is. I know for me, I started with a bath bomb that was CBD only and then tried a THC one and they were both amazing. I don't care for the taste of it when I smoke it but…..considering what the benefits are from it and the relief of symptoms…it is worth it.
For those hesitant to try it, educate yourself or go to a licensed store. Talk with someone who has knowledge in it and experiment with your comfort level. I was open and honest with my team about using it and had no negative reactions from them. For some, it may not be something for you and that is okay too. The research will come with it and I hope to see better support or advice regarding use of it in the future with cancer treatments. In the meantime, do what is right for you!
Take care and thank you @Belladonna for bringing up this topic again. 😊
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Yes, @GloHo I have! I have also found scent/smells really affect me. If my family is eating something different from me, they have to remove their plates when they are finished because it starts to turn my stomach. I have found my sense of smell has heightened as of late. Why? I have no idea. Some foods, like you, I think I want and then find out I don't want it. It is very interesting this journey, isn't it? I know when I had my surgery, I couldn't stand the smell of cooked eggs let alone eat them. So I hear you on your issue. Hang in there and I hope it is a short phase that does not stay for you. ❤️
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@GloHo I am so excited to hear this news! Thank you for sharing. I bet it gives you a huge sense of relief. None of us want to look that far ahead, speculate and plan but it is something we should do at some point in time. Thinking about it, and knowing what you want and don't want will ensure you get the treatment you want in the end. As long as your physician knows, they will carry out your wishes. All I had to do is reach out to my care co-ordinator and she has done the paperwork on the other end to ensure that I will go to Hospice when it is time. I feel so much better about that and that if ambulance is called that the same will happen. I will NOT go to the hospital. Maybe look into that as well when it is time and the facility has been built.
The thing we all have is the ability to choose. We can choose what the end path looks like, we just need to be ready to look at it, embrace all the emotions that go with it and then express those wishes with our loved ones and our team. We have the ability to control the narrative while we can. It is scary and not something one wants to think about but it is ours to choose should we wish to do so. I hope that talks in the past and now have helped you with making some decisions. I also hope it has taken away some of the negativity or darkness around the topic of death and dying and has normalized it a little more for many. It's not saying it's happening tomorrow or is imminent and continuing with living all the while we plan. 🙏
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Well that is one of two infusions done now, isn't it? Then you are done chemo for a bit? Yes?
I hope so for you. Yes, it can get more and more difficult to find a vein. If by chance you needed more treatment (I hope that is not the case for you for a long time), perhaps it might be worth exploring a PICC line and what that entails to save your body from all those issues.
Yes, Dex is a great drug isn't it? Such a false sense of energy that we can sometimes overdo it. Be careful.
Glad to hear you are having a nice visit with your friend/GP today. It will be a lovely visit no matter what you discuss. You enjoy that.
When you do get a break from treatment, do you have anything you want to do when you feel better? Start thinking and maybe planning a little. It will be like a pot of gold at the end of the rainbow for you. 🌈
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@Strongwoman that was just my first cycle so I have one more to go on May 8th. I did some household chores this morning and went for a short walk around my yard checking out all the blossoms and buds. I have a follow up appointment with my onc. surgeon on May 3rd and if he gives his approval I want to get back to yoga class. I looking forward to being able to do some gardening and even mowing my property. I find spending 3 or 4 hours on the ride on mower to be very therapeutic. It's like a form of meditation, lol. My son mowed for me this week and will continue to do so until I can handle bouncing around for several hours.
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@Lorraine5845 I was looking back on the thread and you had mentioned you were going home from the hospital. Did that happen? How are you doing? How is the bloodwork? Doing okay or slowly getting energy, etc back? How is your journey going these days and how it is affecting you emotionally or physically? Let us know when you are up to it. Keep up with recovery.
Take care❤️
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Uggh @JoanEG I can feel the weight of what you went through when this happened to your husband. It must have been quite awful and traumatic in ways that I can't even begin to imagine. Have you been able to come to some sense of peace over it all or does it still affect you? The knowing that a part of it could have been prevented must be very difficult to process and heal from. Hoping you have had good supports to help you through this part.
You are right that it is important to know what one wants and to voice them to loved ones and your team. To be clear and concise in what they are and what one wants and does not want. I have been doing a lot of that throughout my journey and more so recently given my news last week. The last thing I want is for my hubby and kids to have to even think about what to do or decide what to do. I want them to be at peace knowing it is what I wanted and that it was followed through with.
Please don't apologize for sharing your story about your hubby. It was real and a very dark and difficult time for you. Take your time in healing from it and share whenever you need to. We will be here.
💕
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I’m still in hospital. Finally got a ct scan today and waiting by my bedside for the results. An internal medicine resident told me high calcium can mean my cancer possibly went to my bones . So u can imagine I am going down a massive rabbit hole right now. Physically feel better and hungry , my calcium was lowered (for how long no one knows or how short lived this will be) my electrolytes slowly recuperating. The first thing I did was text my psychologist 9-1-1. There are some things you need to talk with someone outside your family and friend circle. Bring you back to earth. ❤️
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