How long have you been Stage IV?
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@tougholdcrow Sorry to hear that you still have acid reflux from the meds. But, it's encouraging that one dose of Omeprazole can clear things up for days. Enjoy the hiking and kayaking when the weather allows!
@ssales13 Really achy! No fun. Hope your MO appointment sheds some light on what to do for you that might help. Can't wait to hear about your golf adventures once you start!
Hugs, Pam 💗
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@livinglifenow Pam, thanks! I will definitely be letting you know😊
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Hi everyone! Had a busy week. Had a good appt with mo and I may be getting my pleurX out in 2-3 weeks! My output has reduced greatly, only draining 2x a week. Direct response to Kisqali says doc. Also, my wbc and neutrophils are doing better too! Less abnormal 🥳 Feeling fatigue but pushing through to get some physical activity in every day - even if it is just walking a couple of miles. @livinglifenow I find the best way for me to be distracted is by either reading a really good engrossing book, walking or folding laundry while listening to an interesting history podcast (recommend highly ‘The Rest is History’ podcast, there are so many episodes/topics to choose from & the historians have a very dry humor and are full of fun facts) or cooking a complicated recipe. Keep the brain occupied! I pray your scans show only good news!! 🙏 @tougholdcrow i rely on omeprazole to keep my heartburn at bay and am always pleasantly surprised! The only time my heartburn is gone is when I am on a low to no carb diet which I can never stay on for very long. @ssales13 im sorry about the achiness! Hope it subsides fast! Praying for good news at your next appt!
No news on the new pup front but we are looking!
Hope everyone (including folks who just read this active topic) have a lovely calm and comfortable weekend!
ttfn! juliana1 -
@EddieJ Juliana, thanks for the prayers. I appreciate them .Thats awesome about getting your pleurX out! I hope you continue to have a great response to the kisqali. I’ve been doing good on it as well and should be getting the denosumab shot soon. I went to see my dentist last week and was told that once I start it I can never have any teeth pulled😳Hoping I don’t have any major issues.I find reading a good book or housework or yard work keeps my mind occupied. So glad it’s spring! Hoping it starts to really warm up soon. Hope you have a great weekend.
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@EddieJ Juliana, good news on the PleurX! Praying that is behind you soon. I am making note of "The Rest of History" podcast right now. I will give it a try. Thanks! On the distraction front… I just got a ticket for a ladies' luncheon tomorrow that is a "Big Event" in our little town. I have not attended before. That should be a great time with friends tomorrow! And, I am an avid reader, which really does help with keeping my mind on something else. Wishing everyone a great weekend!
Hugs, Pam 💗
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Hey ladies, just checking in. Shingles is still hanging around. I had radiotherapy to my pelvis this week, and started Truqap - my fourth line of treatment - this morning. Have a good weekend all. E x
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@emiliamarty sorry to hear the shingles are still hanging around! Praying the Truqap works great for you. Hope you have a good weekend as well.
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@emiliamarty Shingles on top of all this!! Just not fair 🤬 I pray this 4th (!) line of treatment does the job. Sending you hugs of comfort and care ♥️
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@EddieJ @livinglifenow @tougholdcrow @ssales13 @emiliamarty
Hi everyone,
I have been enjoying a few good weeks without nausea, so thankful for that. I’m on my week off Kisqali now.
Getting some really nice spring weather here and definitely enjoying the sunshine
I hadn’t realized that there are several people dealing with heart burn, I take ppi’s for gerd . Could be the generic version of what you are taking, it’s pantaprozole.
I seem to be dealing with some boredom lately, looking for distraction tactics all the time. Watching documentaries just isn’t doing it anymore. I used to be quite crafty but I find that my hands are shaky now and I just get frustrated when I try knitting, crocheting or even rug hooking. I think I’ll just wait and see if this side effect goes away and try again.
@EddieJ such amazing news that you might be getting your pleurx removed. Have you had a nurse come to drain it for you? What level did you get down to before they started to consider removing it? I’m hoping that my right side is removed at some point, I’m getting 150 mls 3 times a week from the right.
Hope everyone has a joyful weekend
Hugs,
Lafish
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@lafish Im glad you haven’t had nausea in a few weeks! Thats a miserable feeling.I hope you find a new hobby to get into and also that your shaky hands subsides so that you can get some crocheting or knitting done. I like to crochet but I’m not very good at it. I hope you have a wonderful weekend!
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@EddieJ, @tougholdcrow, @ssales13, @emiliamarty, @lafish
So glad to hear from everyone! This is such a great community.
@lafish So glad you are having some nausea-free weeks! But, sorry you are in the Heartburn Club. I just started Nexium today. Plan to take it for 3-4 weeks to see if it helps. I really need to pay attention, though, because, as we all know, the absence of pain is not nearly as noticeable as the presence of it.
Ah, boredom! Always a challenge. I used to be able to fill those empty hours by deep cleaning a part of my house. Just don't have the energy to do that much anymore. 😕
Glad to hear that most all of us are making some positive progress in the journey.
Hugs, Pam 💗
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@EddieJ, @tougholdcrow, @ssales13, @emiliamarty, @lafish
Hope all is well with all of you on this lovely Monday. Well, I had my PET this morning and by the time we arrived home I was able to see the results in the patient portal. Not NED as I had hoped, but one nodal mass and one sclerotic sternal metastases are both stable and have gone down slightly. And, although some nodules were seen in the lungs at the beginning of all this, they were never biopsied (so don't know if they were even cancerous or just inflammation, etc.). Anyway, there is nothing seen in the lungs at all now! The only real area of concern is a new hypermetabolic lytic metastasis within the sternum. I immediately called my MO office and asked to speak with her. (My appointment with her isn't until next Tuesday.) While waiting for her, I called my RO (who I had 2 consultations with earlier in my diagnosis.) While waiting to hear back from him, my MO called and said that after looking the PET over, she suggests radiating that one spot and continuing with my HP protocol, which seems to be working for everything else. She is going to speak with my RO to see about getting things set up. So lucky to have such a responsive team!
Now more appointments and hopefully putting this to bed for a while.
Hugs, Pam 💗
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@livinglifenow Pam, I understand wanting to be NED but I’m glad the 2 areas are stable and that they have decreased in size and the lung nodules being gone are all Great news! And as far as the sternum area it sounds like your Mo and RO are on top of everything. I’m sure when they radiate that area that pesky lesion will be gone as well!! Praying that you become NED soon❤️
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@ssales13 Thank you so much for the positive thoughts and prayers. I am looking forward to getting this gone once and for all. It is, perhaps, part of my GERD/cough issue…. Wouldn't it be great if that disappeared as well!?
Enjoy this lovely day!
Hugs, Pam 💗
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@livinglifenow Pam. Awww you’re welcome! Yes that would be amazing if it disappeared. I’ll say a prayer that it does. I hope you have a nice evening Pam! I go to see my mo tomorrow. I’ll give an update when I get home❤️
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@livinglifenow Pam, Such wonderful news from your scan! It may not be total NED but you are definitely heading in that direction! Your team seems great - good on you for finding them and keeping them on their toes!! @lafish so happy to hear your nausea has receded, I hate that feeling the most! In regard to my pleurX, I have a nurse visit once a week and she drains and changes the dressing. Since the beginning, my DH drains me or changes my dressing in between nurse visits. I’m down to draining 2 times a week & my last drain Sat night was only 20ml! The 3 drains before that were all around 25ml. When I first started, I was draining around 150-200ml every other day. The Kisqali is definitely doing something good!! I cannot wait to get this drain removed! It bothers my sleep and now that the weather is getting warmer and my hot flashes are more numerous, I’m getting skin irritation under the plastic dressing. Get it out!! Can’t wait!!
We are planning a possible Alaska cruise trip in June! Comparing the different options from each carrier can drive you mad but we are keeping the eye on the prize - a great trip and new memories to make! We are planning with close friends of ours - hope to have it reserved by week’s end.
Stay cool everyone and enjoy all the good stuff each day brings! juliana xo0 -
@EddieJ Juliana, thanks for the encouraging words. So glad your drains are soon to be removed. A trip to Alaska! What fun. Great to be planning for the future!
Hugs, Pam 💗
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@EddieJ , @ssales13 , @livinglifenow , @tougholdcrow , @emiliamarty
Hi there everyone,
I’m feeling grateful for having these online connections and conversations, definitely lifts my spirit to see such positivity.
What wonderful news livinglifenow, sounds like your team is doing what needs to be done and doing it quickly.
Thanks for the info regarding your drain @eddiej. I’ve been wondering how low the fluid has to be to start thinking about drain removal, I’d be happy if I could get rid of one drain soon but I might have to wait a while before I get as low as yours. At least they don’t bother my sleep so that’s a big plus. An Alaskan cruise, wow! What a fantastic way to create memories!
Hope everyone is enjoying their week and getting ready for spring, finally
Hugs,
Lafish
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@EddieJ I went to Alaska some years ago and backpacked in Denali National Park. Saw the bears and the Northern Lights. Absolutely magical.
Just had my monthly go-around with the oncologist, and everything is hunky dory. Long may it remain so for me and you!
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@EddieJ, @tougholdcrow, @ssales13, @emiliamarty, @lafish
Hi, all! I got in to see my RO today! Wow! We had a great discussion on the PET/CT findings. He is so good at explaining things. The plan is to 1) get insurance approval; 2) do planning session; 3) a week or so after planning session do 5 treatments (M, W, F, M, W). 4) Done!
I am really looking forward to getting this done. The tightness in my chest is getting worse. So, hopefully insurance will approve this radiation therapy soon.
@ssales13 Stacy, how did you appointment with MO go today? Hope progress is being made.
Hugs to all, Pam 💗
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@livinglifenow Pam, so glad you had a good discussion with RO! 5 sessions that’s great. I seen my MO yesterday and was only there about 15 minutes. I start denosumab next month at my next mo appointment. I was told once I start this medication that I can’t have any teeth pulled or have a root canal done because of ONJ. I have some dental issues and don’t have dental insurance but am worried about having problems. I have had 2 SE’s pop up from the Kisqali . 1 is a UTI ( I go on antibiotics tomorrow) 2 itching ( arms mostly but no rash) and MO said that I will be having a pet scan sometime in May to check and see how everything is.I hope you and @EddieJ , @tougholdcrow , @emiliamarty and @lafish all have a wonderful evening!❤️
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@ssales13 When I started Kisqali a year ago, I had pins and needles feelings on my skin. I don't have that anymore, perhaps because the dose was lowered to 400 (low white blood cell count) or I just got used to it. Good thoughts to all of you.
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@tougholdcrow thanks for letting me know that I appreciate it. Good to know that if they lower dosage it might relieve my SE’s. I did notice on my blood test that my white blood count was lower.
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@ssales13 Stacy, thanks for the update. It sounds like things are moving along for you. I may be starting Zometa soon. Will talk with MO about it next week. It is also a bisphosphonate that can cause ONJ. Yuck!
Although I have had an itchy rash since starting Perjeta/Herceptin, it has finally stopped. I think it may be due to me starting using Lubriderm lotion. I slather my entire body after every shower. I am shocked that this is working, since I don't have dry looking skin. Anyway, it's something you may wish to try. Strange, but true!
Have a great evening.
Hugs, Pam 💗
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Hi all! I have to say I live in denial sometimes; I never thought my itchy skin was from Kisqali - silly me! I just thought it was dry skin. Of course, thankfully, the moisturizer is working to keep it under control. @tougholdcrow My trip to Alaska will be tamer but your trip sounds amazing! I will be seeing Glacier Bay which I am very excited about. We r doing the cruise round trip from Vancouver. Great to hear everything is hunky dory! So happy for you!
@ssales13 So sorry about the UTI - antibiotics usually work fast on it. I’ve had denosumab shots monthly since January. I read about ONJ - scary stuff! Let’s assume it won’t get any of us!! You and I are getting our next scans around the same time May. They will be the first ones since I was first diagnosed. I’m working real hard to not think about them. I am feeling too good and don’t want to burst my bubble. Again, assume the positive!!
@livinglifenow Pam, hoping the radiation gets approved post haste and you get the treatments soon!
Stay cool gals! juliana xo1 -
@livinglifenow Pam, thanks for the lubriderm lotion tip! I will try that and see if it helps me too.
@EddieJ Juliana, thanks hoping it works fast. This pet scan will be my first as well since starting treatment! I’m glad we are having ours around the same time. We can encourage each other. I hope everyone has a great day today❤️
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@EddieJ, @tougholdcrow, @ssales13, @emiliamarty, @lafish
Just wanted to let everyone know that I got insurance approval this morning for the radiation and an appointment for the planning session this coming Tuesday following my ECHO, MO appointment, blood draws, and HP infusions. It will be a long day but save us an extra three hour trip. So grateful for such a wonderful, responsive team!
Hugs, Pam 💗
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@livinglifenow Pam, that’s great! It sounds like you have a great team. I will be thinking about you Tuesday and your in my prayers. Have a great day❤️
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Hi all! So the cold I caught from DH has turned into pneumonia. I knew I wasn’t feeling ‘just a cold’. Started meds yesterday; fever may have broken, will tell for sure come late aft when it tends to rise again.
Since we are all in the same club here, I would love your thoughts. I know we are all different and we don’t know each other but you are still the best crew to ask. I seem to catch illness every 2-3 weeks these days. A stomach virus a couple of weeks ago and now this. I know it is from lowered immunity from the cancer drugs and my need to keep my life as same as possible. I am now thinking this is not the time to be going on a cruise. But, I keep thinking that while I can do, I should do since I can’t tell the future. Please think on it and let me know what you would decide for yourselves. @livinglifenow Pam, I hope today goes well!0
