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Comments
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So glad you're starting to feel better. It's amazing what constipation and stress/anxiety can do to our bodies!
Interesting about the pleural effusion. I did not know that. My Onc did not mention that it was connected to progression. But since I do not have any other 'conditions,' I knew it was definitely connected to the cancer. I didn't really think about it that way. Now I am really interested in what my Onc has to say about the decrease and see what my other tests reveal.
Thanks for the info!
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@GloHo I got so anxious and shaky today that I went to the clinic. They did a Covid test which came back negative. The on-call GP said that as the hospital had done such a thoroughwork up on Monday and found nothing, she could only suggest it was cancer related and suggested I call my onc first thing Monday morning. This was very scary to hear. She said sometimes cancer makes people feel. Very ill. Duh!
So we came home and I took. More pills and felt better, went to sleep. Its the tiredness and shaking that really worries me. I jus t want to sleep all the time. she also said that the heat has been making people feel very ill here and if you already have vulnerabilities it could make you feel worse. That does makes sense, except that every fan in the house is on and the house feels quite cool.
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I ended up in ER last year with aches, pains and shakes. They couldn't find anything except that my magnesium was very low. I started taking magnesium twice a day and within a week all the symptoms were gone. Just a thought.
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@Hooodith
So sorry to hear your symptoms are not easing. It sounds like you are tired of being tired. I’m not sure how long you’ve been taking the meds, but could your symptoms be related to one or both of the drugs or an interaction between the two? When I check the drug checker, it says they are both sedatives and can cause drowsiness. It also says to monitor closely when taken together. You may have developed an intolerance or the side effects have just shown up?
Since it’s the weekend, maybe a quick visit to your neighbourhood pharmacist for a little chat about the drugs and whether or not they think your symptoms could be related? Or, wait until you see your Onc next week. Do you have a nursing triage/help line at your cancer centre? If so, another option would be to give them a call…
Given that all of your other tests are A-OK 👍, maybe this is something to be considered and worth checking out.
I am not yet on any meds so am just guessing at this. Because I seem to be oversensitive to drugs (even OTCs!), this would be something that I would explore.0 -
@Hooodith
I just saw @jmbarrhaven post. So great to have this forum to share our experiences!!0 -
@JoanEG tha low magnesium fits the bill but I already take 250 mgs a day along with Vit D 3. I am a bit worried about taking too much as it is not water soluble. But I am going to try and eat magnesium rich food to see if that helps. Fed up with being sick when I am supposed to be in remission and feeling normal.
it is really hot here, and this could definitely be affecting everything too.
thanks everyone for your suggestions and support. I am doubly sad because its Gabriola’s music festival this weekend and there are some good performers slated, some of them for free! Still, there are loads of things on all summer, I hope to be able to take some of them in when Infeel better.0 -
@jmbarrhaven sorry that was meant for you..
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@Hooodith someone on the chat recently mentioned epsom salt bathing as a way to increase uptake of magnesium. I've been doing that every second evening. I think it has been helpful, especially for cramping. It just amazes me how a deficiency of one nutrient can have such a huge impact on the body.
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@Strongwoman I appreciate your suggestions. Unfortunately nothing cancer related is ever open on weekends here. Its as if cancer doesn’t exist on Saturdays and Sundays. I have no “team”. Just an onc who doesn’t call back when I ask him to. I sometimes get a woman who calls me back and promises to pass on messages but nothing happens. Our pharmacy is closed on Sundays. And he is very young and not very knowledgeable, even when I do get hold of him. Our nurse hotline just tells me to go to the hospital, an ambulance journey that is long, on a ferry, extremely uncomfortable. The only thing good about it is that our paramedics are now very well trained but still cannot give you anything stronger than tylenol. Oh, and if you arrive at the hospital in an ambulance they take you quite seriously and you get to see a doc in two hrs instead of seven. It takes me huge motivation to call an ambulance. But I am glad when I do because in the hospital I feel safe and they usually give me Injectable dilaudid and then I begin to relax. I got a hunky doctor on Monday so that was nice and distracting. My 77 yr old self has not given up on appreciating the young male body yet. And I like people watching. The staff, I don’t stare at the other patients. My poor husband though has to sit on a hard hospital chair for hours. He says he doesn’t mind, but my butt would go numb.
I do appreciate all the feedback, I feel so much less alone.1 -
@jmbarrhaven when you said you took magnesium twice a day, did you mean you doubled the reccommended dose ( 250 mgms ) or did you split that dose into two ( 125 x2)?
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@Hooodith I'm allergic to glycerin/glycol so I'm limited in what forms of mg I can take. I take 100mg twice a day plus epsom salt baths. A doctor also advised that I could take it 3 times a day during the week of chemo to help offset constipation and get an extra dose. It worked well.
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Hi everyone, I took an extra half a pill of maagnesium and almost immediately felt better. Thank you so much for this help. I also slept very well and woke up feeling chipper.
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I also ended up in ER tired, sore and achy. It turns out I also have water on left lung. Very achy since that is where most of my tumors are located and therefore cause extra pressure. I will have my lung drained on Thursday. I am sure to be disqualified from any of the trials I pre screened at PMH. I will find out tomorrow.
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@GloHo Hi Gloria! I hope you’re enjoying this beautiful weekend! I have a biopsy of lymph nodes in my abdomen in preparation for the trial @ PMH, and saw that you’ve experienced a biopsy
(or 2) and wondered how it went. Is it painful? Is there anything you can take for pain prior to? I’m not anxious about it, just curious. I appreciate any advice. Thanks so much!
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A peaceful evening at the marina while my husband builds new stairs
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Hi. Ahhh…the marina does look peaceful. So nice to relax and catch a breeze.
I have had 2 biopsies. The biopsies are ultrasound guided and they use a local for freezing. I did not ask about pain management either before or after either biopsy so I don’t have an answer for that. The first one, I was a tiny bit sore at site. The second one I experienced more pain when the freezing wore off but did not take anything. It was much better the following day.0 -
Good Afternoon Ladies.
What brings you here today? I am busy wrapping Legacy gifts. The latest are the things I made in case they have babies later on. So am having fun wrapping them but then get teary when I write in the card about maybe not being here for such a momentous event. Catch 22 isn't it. This getting prepared no matter what. What I did realize though is that I have another baby blanket to make as I am missing one for the other son now. So that is something that will keep me busy.
I am out of the funk I was in and feel better for it. Talked to Oncologist on Tuesday and all my bloodwork looks normal which is good and liver and kidney function is good. CA 125 markers aren't in but expect them to be elevated nonetheless. From that visit we agreed I stay on Letrozole and continue with it and then we repeat bloodwork and a visit every 3 months. We can change it if symptoms change and go to monthly anytime. All of it was my suggestion and I am okay with it all. I spoke to Palliative doc this week too to do with the pains in my abdomen. We have increased my Dex daily and she has given me Lorazepam for nighttime as well as I was not sleeping mainly to do with the pain. Last night was a success and my tummy has calmed down too which I am happy with. If it stays that way I will be over the moon with happiness as it was getting very wearing. So fingers crossed we have found the magic formula for now. We think it is the lumen narrowing and the peristalsis happening because of it that is causing the pain. The Dex will allow that to be as open as it can be and decrease the pressure I feel because of it all. The pain was constant with waves of acute pain from the spasming that would occur. I am thankful it has calmed and my doctor is readily available to help me over these humps.
I am steadfastly preparing everything I can for them in case that day comes that I can't then the packages will be wrapped and journals or notes written for them to view in their own time. My mind will be at rest I have prepared for the rest and as always hoped for the best. This weekend our new landlords are insisting on coming to do some home inspection which is making me miss a first birthday party for my dear friend that I am "Auntie" too. She has gone a little over the top for her first which includes a petting zoo and a Hungry Caterpillar themed birthday party, The absurdity of it all for a one year old is over the top but hey she is happy doing it so why deny her all that happiness. The next thing is hoping baby makes it for the party and is happy for the time being. Fingers crossed. I have let her know we will get together another time should I not make it there due to this inspection. Which may be better knowing how many people will be there. I may be good with a one on one instead of all that chaos. Anyhow.
How are all of you? Where are you at this week and what is going on in your life or with your journey that you want to talk about? I will continue wrapping away as I wait to see who is on today.
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Greetings beautiful teal sisters.
I hope you are having a wonderful week. My husband, Steve, and I are on our way home from Princess Margaret Hospital, where I had 7 biopsies. They were going to put me under which would have meant staying in the hospital for the day, however I forgot to fast, so they just froze the area on my abdomen and took the tissue needed from lymph nodes that appear to be abnormal.
It’s a rest day for me, although I will have to do some work to prepare for our guests who arrive tomorrow from Victoria. I’m very excited to see them. We used to see each other all the time, but then they moved out west, so I’m grateful to have them here for a visit.
My abdomen is sore from the biopsies, but the pain is manageable so I’m not taking anything for it.
When I read about the legacy work that Stongwomen has created it makes me want to get creating! I’m so impressed 💜
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@Sandi6 Impressive 7 biopsies. You are a trooper! I imagine you may be sore in the days to come so make sure you rest if needed. Good to be excited about company too. Gives us a different focus.
Thank you about the Legacy work. I am so worried I won't have it all wrapped that it is my biggest goal is to keep up with that so there is no guess work for them should something happen to me. It is kind of fun planning for the future but bittersweet knowing I may not be there for some momentous occasions. Knowing I am prepared and they will have something that is a keepsake from me and will always remind them of me brings me great joy. I am glad I am doing it because now I a missing one blanket and 4 cards to go with the gifts. I am addressing them to the boys themselves and welcoming their new baby boy or girl. Who knows maybe there will be none but they will know I was prepared all the same. Gives me something to work on and a sense of purpose. So 4 more gifts to wrap today and I am done for the day with that.
Make sure you rest when you get home. Take care.
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Hi everyone.
What weird weather we are having in Ontario!! When I was in Toronto on Tuesday, the storm caused flooding in the hospital basement - this affected radiation patient appointments for the next couple of days. The storm also caused street light outages! It took 1 1/2 hours to get from the hospital to the Lodge…usually no more than a 20-minute trip!! This delayed my leaving to head home but I looked at it as a blessing in disguise otherwise I would have been right in the middle of the mess, so it all worked out 🤣🤣 .
On the good news side…I’ve made it to another birthday!! 6 birthdays since I’ve been diagnosed 🎉. Blessed 🙏😇.
The not so good news…
My CA125 has increased significantly (+1200). I believe this increase indicates progression. I have a CT scan scheduled for the end of the month - this will show, definitively, the degree of progression.
I am still feeling ok, although I have noticed some tenderness in mid-section. I am unsure if it is the cancer or bowel…my bowel movements have been slow moving.
I have an appointment with the trial Onc a week after the scan…I am expecting to be withdrawn from this trial
Never fear…I have already set up an appointment with my primary Onc for the day after my appointment with the trial Onc 🤣. There is another trial I am interested in and it is being conducted out of London (as well as PMH)…I have alerted her nurse that I want to talk to her about it 🤣🤣.
So, I have done my self-advocating and have started things moving for next steps…I can relax at the cottage starting Friday and not fret about all this “stuff” while I’m away 😁.2 -
@GloHo Sorry to hear that there is a possibility of progression for you. I am awaiting my new numbers and am expecting them to elevated again. I hear you on it. Sounds like you have your plans all lined up and hope it works out and that there is another trial for you. I inquired about chemo for me in the future and was met with "it will increase the chances of recovering from a bowel obstruction very difficult". Which means it is out of the equation for me. I don't need anything working against me where my bowels are concerned. So Letrozole it is for now.
Sounds like you have some wonderful plans for the weekend. Hope you enjoy the cottage and don't fret while you are away. Sounds like a longish day for you too. Go home and rest and put your feet up. I am about to make myself some potato soup for dinner. I finished all my wrapping for the day. Glad it is done and it feels good. So that is good for the soul.
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Good afternoon everyone. Just had a visit from my GP. As much of a social visit as a medical one. She wanted to touch base with my daughter while she is here (they are old friends) and answer any questions she might have. When I told her I haven’t heard about an appointment with the surgeon regarding the bowel surgery she sent a message for her staff to check on that. I truly appreciate her always going above and beyond for me. It is nice to have nothing on my agenda this weekend as the last two have been very busy!
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