How long have you been Stage IV?
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@lafish So sorry that you are having to deal with a stage IV recurrence. That is my case as well, but I lasted 15 years before the nasty beast showed its head again. I am not on Kisqali like you and soon-to-be-on-it @ssales13, but I am on the anastrozole. I think that is causing me some nausea and indigestion, though no vomiting. However, I am also on Herceptin/Perjeta infusions every 3 weeks. Sometimes hard to tell what might be causing what. Sorry you have to deal with those drains. Do you know how long you will need them?
This is a wonderful community that is very thoughtful, supportive, and caring. Please keep us posted on how you are doing and feel free to vent, ask questions, and offer suggestions whenever you like.
Thinking of you! 🙂
Hugs, Pam 💗
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living life now, It’s so unfair staying clear for that long and having it return. I was on anastrozole and a few different types of hormone blockers for 8 years, I was basically told I needed to stop taking them so I stopped. 4 years later it came back. I can’t help feeling that if I could have stayed on anastrozole I might not be in this situation . I think it is a very powerful drug for us.
The drains will be in as long as there is fluid in my pleura, it seems to be less and less fluid every week now so hoping the Kisqali is doing that for me.
I’m not sure how to type in your user name to get it to notify you. Sorry I’m still getting used to the new site haha!
Hugs
Lafish1 -
@lafish, just type in @livinglifenow with the @ sign in front and that should cause someone to get notification that they’ve been mentioned in a post.
It’s so hard to know if a treatment should be stopped or not. Especially for how long. Our doctors are all trying their best based on the current information that they have.
Since we know cancer can be caused by inflammation, and that Covid (especially long Covid) causes inflammation, I sometimes wonder if my long Covid could have triggered my recurrence. Or not? Impossible to say.
I’m trying to stay busy, especially on days when I feel better. I plan outings and activities whenever I can. I am retired, so don’t have the distraction of work this time around. If I don't have the energy to do something, I don't do it. Rest is critical when our bodies need it.
Lafish, keep busy and keep thinking positive thoughts. I know it’s tough at times. But, there are so many treatments that work for a long time these days. Wishing us all a great run!Hugs, Pam 💗
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thanks so much @livinglifenow and @ssales13
I am also retired and staying busy with a new puppy of all things haha! He’s adorable and gives lots of puppy happiness.
I think I just need some more sunshine and less snow here. Getting there with the sunshine 😁
I have some absolutely wonderful doctors and nurses that I am so grateful to have and appointments are keeping me busy these days.
So sorry to hear about your long Covid, certainly something you could do without. Hopefully you are doing better with that.
Always positive thoughts! 😁😁
Hugs,
Lafish
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thanks for the instructions @livinglifenow , I think it’s working for me today.
Just wondering if there are any active discussions for new stage 4 or possibly a discussion for lung, bone liver or maybe Kisqali stage 4 treatment?
I’m back after 12 years so I have some catching up to do in my new situation.@ssales13 thanks for your encouraging words, I appreciate any guidance at this point.
Hugs,
Lafish
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@lafish Once again, so sorry you are back here. It sure was nice having a break for over a decade, though, wasn't it? But quite the shock receiving the recent diagnosis. I never thought this would be me!
Now to your question regarding discussions on various topics. You have several options.
- Click on the search bar (top right) and type in various items you are searching for. I found a discussion on Herceptin/Perjeta that started in 2015. I read through the entire thing. Took me days. I learned a lot.
- Contact the moderators. I have not done so, but if your type @moderators with your question, someone will respond.
- I started going to the Wednesday ZOOM sessions (see below). Roughly 20 women show up each week. Some are the same and have been coming to these meeting for years. Definitely gives one hope. And, some are new Stage IV gals. A place to just listen, or share, or gather information from people going through what you are. Although I will not be attending this week (have an appointment), I will be there next week—March 12th.
For those with a diagnosis of metastatic breast cancer (MBC; also called stage IV)
Register: Mondays at 2:00 PM EST, Tuesdays at 1:00 PM EST, and Wednesdays at 4:00 PM ESTHope this all helps, @lafish. It is so daunting at first. If you have any other questions, I will sure try to answer them as best I can.
Wishing you a fabulous week.
Hugs, Pam 💗
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Hi @livinglifenow and @lafish well I got my Kisqali from UPS today and will be starting it tomorrow. I’m always a little nervous about starting new medication and the side effects. I hope everyone is having a great day today. It’s raining here so I’m relaxing today and being lazy.❤️
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@ssales13, Stacy, so glad your medication finally arrived. I hear you regarding starting a new medication. It's always a bit unnerving. Hopefully, you will have very few side effects! 😏 And, enjoy being lazy today. You deserve it!
@lafish, hope all is well with you and you are finding some answers.
We have lovely weather today after clouds and snow the past few days. That always makes me feel better.
Best to everyone. Keep in touch!
Hugs, Pam 💗
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@ssales13 great news your Kisqali arrived and you started tomorrow. Treatment medications are always a little nerve racking but the good that comes from taking them takes over and only positive healing thoughts when you get going on them. I had my second zometa infusion last week, no side effects and I feel positive about getting them now.
@livinglifenow yes I am learning so much just from reading posts, so much great information and supportive discussion. I’m also learning some of the tech stuff, not zoom yet but I might give it a try at some point lol!
Just got back from a clinic appointment to have one of my pleurex drains unblocked. It’s happened before just something to watch out for when it happens.
It’s very rainy but unusually warm here today, no snow covered roads to deal with thank goodness 😁Hope everyone has a wonderful day
Hugs,
Lafish
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@ssales13 I hope you feel very well on Kisqali. I've been on it for about a year and living my best life.
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@tougholdcrow Glad to hear the Kisqali is working well for you. Wishing the same for @ssales13!
@lafish Nice to hear that you are getting lots of great information here. There is a lot to absorb.
Take care, everyone!
Hugs, Pam 💗
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@lafish Thank you! Im glad you don’t have any side effects from the zometa. @tougholdcrow thank you ! Im glad you are doing well on the Kisqali.
@livinglifenow Thank you!
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Hi all, been out for the count with a stomach virus (still awaiting test results but it feels like a typical virus) and started feeling better today since last Friday. I’ve been reading along so am up to date I think.
It appears we have a lot of Kisqali folks here @ssales13 @tougholdcrow @lafish I just started my 3rd week this week and feel rather lucky that my biggest complaint so far is bad indigestion for an hr or so after taking it. I just got back my first blood work since I started it and my WBC and Abs Neutrophil are now both low. I’ve read that often happens so I’m taking this news as positive the meds are doing something I can see so maybe they are also working on the cancer cells I can’t see too! @tougholdcrow my MO says if this drug shows positive results, I can stay on it for years. I am happy to hear you are a year in and doing well on it, congrats!! @ssales13 Stacy, Hope you tolerate it well! Keeping good thoughts!!@lafish Hi! Nice to meet you! I also have a PleurX drain on my left side. I have to say that my drainage levels the last 3 times are practically half of what they were before I started the Kisqali. Did you see a drop in your fluids too? You mentioned you had a drain blockage. Can you tell me what you experienced so I can be on watch too. Thank you ahead of time!
@livinglifenow. hi Pam! You are a wonderful font of knowledge and I so appreciate your sharing! I am considering coming to the zoom Weds afternoons when I can. Maybe see you there!
Visiting the IR doc to discuss the kyphoplasty for my spine next Tuesday - from my research, I am thinking it is just what I need to maintain spinal strength. Let’s see what the doc says ☺️
Take care all and be well! TTFN! juliana1 -
Wow, @EddieJ, Juliana, sounds like you have been down for the count for a while. Glad you are finally feeling better, and that the Kisqali is kicking those nasty cells out!
Continue to heal!
Hugs, Pam 💗
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Nice to meet you too @EddieJ seems we have a few thing in common. I haven’t found anyone to talk with about having the pleurex drain yet so it’s was nice to see your message.
Yes my fluid levels have decreased quite a bit since starting Kisqali, I’m taking that as a good sign as well.
I’ve had 3 blockages since the left side was inserted, signs to watch for would definitely be shortness of breath as I had fluid build up after noticing that there was only small amount of very foamy fluid being drained.
I should mention that the fluid on my left side has always had a thicker consistency than the fluid from my right side.The treatment for blockage is pretty simple. Just some blood thinner type of medication pushed into me drain tube and left for 24 hours before draining again. It’s worked perfectly so far, no problems. Hopefully you won’t need to worry about a blockage as I’m told it’s not very common.
Feel free to let me know if there is anything else you want to know about my experience with Kasqali or the pleurex drain
Hope you are feeling better soon.
Big hugs,
Lafish
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Hi @EddieJ @livinglifenow @tougholdcrow @lafish I started the Kisqali last night and didn’t seem to have any nausea or anything so that was a relief. @EddieJ Im glad you’re starting to feel better! I hope you all have a wonderful weekend. Im thinking about joining the Wednesday afternoon zoom meeting as well! Although it won’t be this coming week. My birthday is Thursday and the weather here is supposed to be 70 and nice next week so I am going to enjoy that as much as I can! I appreciate that I have you ladies to chat with❤️
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@EddieJ @tougholdcrow @lafish and @ssales13, great to have you ladies to share with! I am always cheered when I hear from any of you. So glad your first pill did not cause any adverse effects, @ssales13, and that you have lovely weather to enjoy. It would also be great to meet any or all of you face-to-face on Wednesday’s MBC zoom meeting.
Right now I am waiting to see an allergist regarding my sinus and cough issues that I’ve had for years. I’m always hopeful that there will be a miracle cure for this issue as well! 😁Have a great weekend, everyone!
Hugs, Pam 💗
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@livinglifenow Pam I hope you get some relief from your sinus and cough! I have spring allergies that always start around the second week of April and usually lasts until the first or second week of May ( tree pollen) It doesn’t really last long for me but I’m miserable with itchy eyes, sneezing and feeling like I have a cold. I feel for the people that constantly have to deal with it. I hope you have a wonderful weekend!
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@EddieJ, @tougholdcrow, @lafish, and @ssales13, just wanted to check in on everyone and give you a brief update. I did see an allergist last week. No asthma. No known allergies. In other words, I was tested for everything that could be treated with immunotherapy shots. None of the 53 items showed a significant reaction. Perhaps I'm allergic to myself?? Also, I had my 8th HP infusion on Tuesday and everything went great. I actually felt very good afterwards. Maybe due to the Olive Garden take-out that my DH brought to the infusion center for me?
Anything new from any of you? Hope that everyone is doing well. After some great golf weather, we are expecting a minor snow storm tonight. Great time to watch golf on TV and sit in front of the fireplace!
Hugs, Pam 💗
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Hi all! Happy birthday Stacey! @ssales13 Hope you are having a wonderful day! So happy the Kisqali is not bothering you. I’m on my off week and enjoying not having indigestion every evening. It’s started getting better the last week so maybe I’m getting used to it 🤞🤞.
@livinglifenow Pam I hope you are feeling less sinus issues. I deal with a pretty frequent cough along with a regular post nasal drip - no allergies ever found and no explanations other than I have an over sensitive throat. So, I sympathize and empathize!!
@lafish thank you so much for the drain blockage info! Good to know! I am having some irritation around the entrance area. Can’t seem to bandage it so that the tube stay still and what with my lovely side boob sag, it’s been hurting and annoying. Working to get it better.
Some good news to report! My IR doc said I do not need kyphoplasty for my spine! He reviewed the MRI and says the vertebrae looks stable and since I have no pain or numbness, I am good to be left alone. Yay! One less procedure to endure! Also, the Kisqali seems to be working! I now have to drain only twice a week since the volume of effusion has decreased more than half! Plus, my swallowing issues have gotten so much better and I believe that’s bc my chest lymph nodes are less swollen or inflamed. Seeing my mo on Monday - will report back!
🌞So happy that our weather was so nice this past week I even took a 4 mile hike on Tues! Our first spring flowers have risen too. Spring is coming!!
Wishing everyone a wonderful calm comfy weekend! Ttfn 🤗 juliana1 -
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@EddieJ Isn't it great when you start feeling better because of the meds? May it continue for a long time.
Happy Birthday @ssales13 . I wish you many more birthdays to come.
@livinglifenow I am looking forward to the red moon tonight, as it may be visible where I am.
I have been coughing up phlegm for a month now, and since they found a new 3mm nodule in my lung, I have a nagging worry, even though my onc wasn't worried. She said it was quite common, like 50% of patients show something in their lungs at this time of year (winter).
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@EddieJ juliana and @livinglifenow Pam thank you both for the birthday love!! @EddieJ glad your doing better on the Kisqali and that your seeing results! indigestion is no fun.Im doing ok on the Kisqali but noticed that I have some nausea with it but it’s not too bad. @livinglifenow Im glad you don’t have asthma and allergies and that your infusion went well!! Olive Garden Definitely helps. Its been cloudy all day here today.I hope everyone has a nice evening ❤️
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@tougholdcrow Thank you!! I cough up phlegm as well try not to worry too much. I know that’s easier said than done. I hope you have a nice evening!❤️
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@tougholdcrow Sorry to hear about all of the phlegm coughing. I’ve had that for decades. It is most annoying. People always think I’m sick, when it’s just my normal condition. Hopefully, your doctor is 100% correct! Have a great evening.
Hugs, Pam 💗
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Happy Birthday @ssales13 hoping you had a wonderful day, crossing fingers that the nausea is temporary.
@EddieJ that’s fantastic news about not needing that procedure, you must be so relieved. I love that you are seeing spring flowers, how beautiful. Ours might take a while, snow banks are still as tall as I am in the driveway
@tougholdcrow it’s interesting about 50% of patients show something in their lungs in the winter, seems everyone gets a winter cough
@livinglifenow sounds like you had quite the allergy work up. My Daughter was just told she has a snow mold allergy, imagine, allergic to snow.
Hope everyone is having a great evening.
Hugs,
Lafish
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@ssales13, @lafish, @EddieJ, @tougholdcrow, just wanted to check in all everyone. We've had some cold days with mild snow flurries, but spring is in the air today! Hopefully to stay.
I am doing pretty well. Just dealing with the same old stuffy sinuses, chest congestion, and GERD. Awaiting my next PET/CT scan on Monday. Trying to keep busy and distracted. Fingers crossed.
How is everyone else doing? Have any of you starting golfing yet?
Wishing all of you a lovely weekend!
Hugs, Pam 💗
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@livinglifenow Hope the scan is clear, but we all know it's nerve wracking. I'm doing really well, especially now that the sun is out. Still quite cold here. I suffer from acid reflux, too, because of the meds. Usually, I'll take TUMS at first to see if that clears it up, but if not, I take just one Omeprazole (prescribed) in the morning, and it clears it up for days. Anyway, I am looking forward to warmer weather, and although I don't golf, I do hike and kayak.
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@livinglifenow Pam, Praying you have a clear scan! I’m doing good I have an mo appointment on Tuesday the 25th. I’ve just been really achy ( hips and lower legs) I’m excited spring is here! It’s cold today but we’ve had a couple of really beautiful days in the 70’s here. I have not played golf yet, waiting for the weather to warm up a little more. Hope you and @lafish , @EddieJ , @tougholdcrow have a great weekend!❤️
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