How long have you been Stage IV?
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@ssales13, @tougholdcrow, @emiliamarty, @Elenora, @exbrnxgrl, @lafish, @chicagoan, @EddieJ
Hope you all had a great weekend. We had snow on Friday, which melted by noon; snow on Saturday, which melted by noon. Absolutely beautiful weather on Easter Sunday, and Monday we went golfing. Isn't spring weather crazy?
Well, I finished my 5 courses of Rads on Friday. No pain flares, thank goodness, just some serious fatigue on Saturday, which is slowly going away. 😊 I had another HP infusion yesterday and decided to forego the Benadryl pre-treatment for the itchy rash I'd been getting for months, which I have not had for the past two treatments. It does make me extremely wonky for the rest of the day, so glad not to take it. No itchy rash so far…. So—one side effect gone!!
Still having heart palpitations, milder heartburn, and some shortness of breath. I'm beginning to wonder if this may, in part, be due to reducing and then stopping my "Covid supplements" prior to radiation treatment. All of these symptoms are reminiscent of my long Covid in 2020-2021. Or, am I just having subconscious anxiety or a build-up of toxicity from all my cancer meds? Hard to know. We all are certainly playing a constant balancing act with everything we do and take.
Another gorgeous day outside. Heading to my weekly massage—the best medicine!
Wishing you all a fantastic day!
Hugs, Pam 💗
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Hi all, I've never had radiation, so I can't weigh in on that, but it sounds like it can be a tough road. Thank goodness it's finite, and hopefully the recovery will be quick and easy. I have had chemo (including the infamous Red Devil) and that was wretched. I was very glad to see the end of it, and felt steadily better afterwards. I was just at a wedding. I danced. Gonna dance the night away.
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@tougholdcrow I've heard of the Red Devil. Not something I ever want to encounter. So glad you enjoyed the wedding and got to dance!! 💃
Hugs, Pam 💗
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@livinglifenow @tougholdcrow @emiliamarty @Elenora @lafish @EddieJ @chicagoan @exbrnxgrl Hope you all are having a great day! I love seeing all the pics of your fur babies! @livinglifenow Pam, wow snow for you! So glad it melted quickly and you had beautiful weather for Easter. Also glad that your radiation is done. I had Hodgkin’s Lymphoma about 17 years ago and did 7 rounds of chemo and I think 28 radiation treatments so I understand about the tiredness. Enjoy your weekly massage! @tougholdcrow so glad you got to dance! Well I had my mo appointment Tuesday along with blood work and my 1st exgeva shot ( not sure if I’m spelling that right) so was at Hopkins about 2 1/2 hours and it takes about 2 hours round trip to get there so felt like a long day. Everything went well talked to mo about them lowering my dose of Kisqali as last week the doctor called me last Monday to stop med for a week and then have blood test as my white blood cells were really low. They tested yesterday and levels were good but they wanna recheck in 2 weeks and if white blood cells drop again they will lower dose to 2 pills instead of 3. The weather has been absolutely beautiful here. We have been doing a bunch of stuff in the yard planting flowers and we are putting up a small pool!! I can’t wait as I love the water. I started working more hours ( I’m an insurance agent) I had knocked back my hours after diagnosis to 2 days a week but am going back to 4 days as I need money for all of my grand plans for the summer🤣❤️
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@ssales13 Stacy, I am so sorry to hear you had to go through all that treatment for Hodgkin's Lymphoma 17 years ago. And now this! You seem to be handling everything so well. Glad you are feeling healthy enough to work a few more days each week to get some cash for fun summer plans.
Prayers that your white blood cells get back to normal soon, whether on their own or by lowering your medication dose.
We are looking forward to finally getting some flower pots filled in the near future. One of my favorite activities each spring.
Best to all.
Hugs, Pam 💗
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Hi all, @livinglifenow Pam - happy the rads are done and hope the other se’s just ease off soon! I can’t imagine what the golf course was like after 2 snow/melt days right before! Regardless, you go girl and play!! @ssales13 Stacey- Lymphoma too? I am so sorry! You sound like you are in a good place if you are increasing your work days for whatever reasons ( a pool is a good one tho! 🏊♀️😎🥰). May this good place last a long time!!
My update - I will try to be short and sweet (stop laughing Pam 😆). I have diverticulitis again and thankfully only need antibiotics and not hospital. However, I do have to stop Kisqali while on antibiotics. Again, after I just got back on them a week & half ago. I have to stay healthy so I can be on Kisqali consistently. Plus, I have some great happenings in May that I CANNOT MISS! So, other than doc appts and hopefully pleurX removal, I will be living a boring indoor life and any social activities will be done outside in fresh air. After my May happenings, I will do the same to be well for the Alaska cruise/LA cousin visit the second week in June. This better fu@#$&ing work!!
May happenings! * A fun weddding where I will dance the night away but mostly outside on the fancy patio and not in the middle of the crowd.
* Next happening is fun story and belongs in the ‘You never know who you might meet’ category. My DH and I were invited to attend the annual Hot Pink Party hosted by the Breast Cancer Research Fund organization. This year’s entertainment is Sting! Not my fave but still pretty grand! We met a lovely couple at my cousin’s son’s bar mitzvah. After they learned about my diag from my cousin’s husband, they told us that they were best friends with a major donor and they wanted us to come to the gala. We said thank you but not necessary. We left the party not expecting to ever hear from them. Ha! 3 weeks later we got a call from them saying it was set and we are sitting with them at the head table! So excited!! * Last May happening is a ladies’s weekend in Shelter Island to celebrate my 65th bday. I HAVE TO MAKE THESE HAPPENINGS!!
well, I tried to be succinct but I guess I don’t have it in me - stop laughing Pam! 😂
Gals, sending out healthy & pain-free vibes to you all and keeping some for me too! juliana xo2 -
@livinglifenow Pam thanks!! I’m determined to live my best life and not let cancer control me and I pray ALOT for all of us.I love flowers too but honestly I have the brownest thumb ever but I keep trying to grow them lol! @EddieJ thank you! Wow all these May happenings for you! I hope you get to enjoy each and every one of them! I hope also that after your antibiotics you get to take the kisqali regularly. Have a wonderful evening Ladies❤️
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@EddieJ Wow, Sting. That's pretty cool. I know Shelter Island very well and will be there this summer. I had some week-long delays Kisqali because of low neutrophils. @ssales13 They finally lowered my dose to 400 about a year ago and I'm just fine. I think the research shows that if you are responding to the medicine, there's the same progression free survival as on the higher dose. So if they do have to lower it to 400, it's not a huge deal. Many people are doing well on 400.
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@tougholdcrow Thanks for letting me know that. I appreciate it. I hope you have a wonderful weekend!
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@illimae Happy to put a smile on your face! He may not be my fave but also conjures up many great memories for me too. The Police’s first album came out when I was 18 and a sophomore in college. Just the start of their great songbook. Great songs and great memories. @tougholdcrow Im happy to hear that 400 Kisqali works for you and other folks too! I am thinking I might end up there. My immunity stats went way down after a month and half. I got sick then and had to stop due to antibiotics so don’t know how far down it would go. We will see eventually. Can’t start K again for another 2 weeks.
Happy Saturday all! j xox0 -
@emiliamarty @tougholdcrow Now I'm through Episode 4 on Dying for Sex and feeling really annoyed. It seems to be portraying Stage 4 patients as helpless babies who can't go to appointments alone, need others to take notes, can't call the insurance company for themselves (although in my experience, the hospital does most of the insurance company negotiations). While I like that the lead is portrayed as a person with interests in continuing to live life as fully as she can and heal from past traumas, I'm very irritated with the portrayal of the the caregiver as savior and care receiver as helpless and needy. Sometimes I need help but so much of this I have navigated capably on my own and would be annoyed at having someone always hovering.
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@chicagoan I understand what you mean, being a very independent person myself. I was thinking that I wouldn't have really wanted a big party during chemo!
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9.5 years since de novo diagnosis and stable (NEAD) on first be line treatment of Ibrance and Letrozole. Feeling very lucky.
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@jensgotthis Thanks for sharing your great news! I'm one year behind you at 8 1/2 on the same first line treatment as you. I can't remember if I've asked you before-did you ever have surgery? I did not and am looking into cryoablation for my primary tumor since it has not disappeared.
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@jensgotthis Amazing!!!!
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Great to hear, @jensgotthis and @chicagoan
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It didn’t last forever (and no, I am not cured as one member suggested) but I got 13 progression free years on AI’s alone and have never had chemo. Though shocked by my progression (lulled into complacency)I realize how fortunate it was to have over a decade without progression.
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Being all of 4 months into my ride, I love hearing of all this success and longevity!!!
So thrilled for @chicagoan @exbrnxgrl and @jensgotthis!! Keep going ladies! You all got this!!My best, juliana xoxo
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I love all the encouragement but I am always frustrated by the fact that who goes first long periods of time without progression or fights tooth and nail yet still progresses seems to be random. Yes, I did remarkably well for 13 years on AI’s alone, but virtually no one would ascribe my survival to anything but luck. Certainly no one would prescribe an AI as a stand alone tx today. I find this maddening as there is simply no explanation for it nor any positive steps to share with others. Yes, the 13 years were great but the inevitable was always lurking and now it’s here yet no one can explain why I had more than a decade without progression, The randomness of bc and the fact that we have no cure, trying to control it is not a cure, make me crazy.
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I was here on BCO back in 2009 when I was diagnosed Stage 2 with a lump in my right breast. Treated, told I was NED (with no scans) and sent on my merry way.
Last year, 2024, in July, my appendix ruptured and when they examined it, BC cells were found - apparently this is an incredibly rare place for BC cells to migrate (lucky me) and thus I was dx Stage IV Metastatic.. The discussion between my surgeon and oncologist resulted in a decision that the cells had been there since 2009, undisturbed until my appendix went bad. So I have officially been metastatic since 2009 - which means I've been living with Stage IV for 16 years!2 -
@elizaloo That is an incredible story. 16 years! So sorry for the surprise diagnosis, but then, aren't they all a bit of a surprise. I was also diagnosed the first time in 2009 with stage 1. (See my signature for all of the details.) In 2024 I was having chest pain that felt like Costochondritis that I thought was caused by my chronic cough. MY RO said the tumor in my sternum had been there at least 2 years and was very slow growing. Who knows if it had been there even longer, but gone unnoticed since I had no pain or reason for scans. Crazy disease.
Hope your new journey is smooth. Best to you.
Hugs, Pam 💗
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@elizaloo wow. You just don’t know what will makes itself known, and when. Life is such a mystery. Hugs to all.
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Hi all! Happy to report that I finished the diverticulitis antibiotics a couple of days ago and finally am beginning to feel like myself again. Going back on Kisqali on Monday. Will do my best to stay healthy so I can consistently attack this beast!
Ours journeys to get here were all so different but the warmth and caring we express and support each other with comes from the same place.
Thank you all for keeping me sane and for giving me an unexpected place to find more comfort.
Heading to a wedding tonite! Can’t wait to dance! 💃I picked my song for the album! It’s by Fitz and The Tantrums…. I Just Wanna Shine! So me!!
Wishing all calm, pain free days!! TTFNjuliana xox
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@EddieJ So glad you have finished your antibiotics and are feeling better. Going off meds is always a bit concerning. Have fun at the wedding!
@ssales13, @tougholdcrow, @emiliamarty, @Elenora, @exbrnxgrl, @lafish, @chicagoan, @EddieJ and all others on this thread. It's been quite quiet for a while. I am still feeling the fatigue from my radiation. Just a huge lack of energy. Hope it returns soon. Also still having issues with PVCs, shortness of breath and heartburn. I started Nexium and plan to take it for at least 4 weeks (though I hate being on this stuff). It may just help with the GERD, which may be irritating my esophagus, which may be irritating my vagus nerve, which may be causing all these autonomic nervous system issues!
Hoping for a better week next week when we will finally be getting our RV out of storage and heading to a campground. Looks like great weather for our trip.
Wishing you all a great Mother's Day.
Hugs, Pam 💗
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@livinglifenow , @tougholdcrow , @emiliamarty , @eleanora , @lafish , @chicagoan , @EddieJ and @exbrnxgrl I hope all of you have a Happy Mothers Day! @livinglifenow I hope the Nexium helps and also that your fatigue and lack of energy go away! I absolutely Love camping and wish we had a camper still. I have my pet scan this Thursday May 15th and appointment to see my mo on the 20 th. @EddieJ So glad that you finished your antibiotics and are starting to feel like yourself again and also that you will be restarting your Kisqali. I hope you had lots of fun dancing last night!
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@ssales13 wishing you a clear scan on the 15th! 🙏 I will take a walk by the stream for you when we go camping!
Hugs, Pam 💗
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@livinglifenow I hope to be getting back on the water in the kayak soon, so I may see you walking by! @emiliamarty , @eleanora , @lafish , @chicagoan , @EddieJ and @exbrnxgrl , it sounds like everyone is pulling through, though not unscathed. I suffer from fatigue at times myself, and I'm irritated that my youthful energy will never return, but I'm loving the springtime sun.
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@livinglifenow Pam, thank you! A walk by the stream sounds wonderful!
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