How long have you been Stage IV?
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@forza I cracked a rib during chemo, didn't even know it. The radiologists were worried for a while, but now they don't even mention it. It was determined to be a stress fracture. I was coughing a lot during chemo, and just feeling generally wretched anyway. My greatest hopes for a clean PET in June. f**k cancer and let's keep on hiking!
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Hi all! You hiking gals are amazing! Keep on keeping on!! @forza @tougholdcrow
@livinglifenow @ssales13 @threetree @eleanora and everyone, I’ve been more of a reader than a poster for a bit now. I’m doing ok and may be in for some treatment changes. I am a bit unnerved. I’ll be in touch for your input if that happens. You have all been a wonderful resource and are so helping me. Please know that whether I post or not!
Wishing all a good holiday this week if you celebrate either! Best regards! juliana xox4 -
Hi @eddiej , @livinglifenow , @tougholdcrow , @eleanora , @aj and everyone! I just got on to check in with you all. I hope you all are having a nice Good Friday. I’m taking it easy this weekend and hanging around the house as next week I have blood work, a mammogram and my divorce on Friday. @eddiej Juliana, thinking of you as I might be having surgery and treatment change myself. It’s hard to not be unnerved . I completely understand.But I’ve been told we still have plenty of options right now. Hang in there I’ll be praying for you.
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@tougholdcrow Thank you for asking about me! I appreciate it so much. Im doing ok. I’m sad about the divorce and feel abandoned and a little lonely but I know I’ll be ok and as far as surgery and possible change in meds a little nervous but trying to stay positive about everything and thankful for the wonderful people I do have in my life.
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@ssales13 So sorry you are going through all of these stressful situations at once. I will be thinking of you and praying you have strength. You are awesome! 🤗🥰
Hugs, Pam 💗3 -
@livinglifenow Pam, Thank you so much for your kind words and prayers! I could really use them right now❤️
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@ssales13 Stacey, I’m sending you waves of strength and caring!! I’m so sorry you have to go thru so much at the same time!
I hope that you have a great support system to help you manage and make the best decisions for yourself. Please know I’m here for you in our virtual support world! May our next treatment steps bring us better health, stability and calm 🙏🙏1 -
@ssales13 I hope you have a real shoulder to cry on because this is tough going. You have our virtual ones! I hope the change is ultimately for the better though it is sometimes hard to see when you're in the middle of it.
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@livinglifenow , @aj , @tougholdcrow , @eleanora , @eddiej I appreciate you ladies, I really do! I’m gonna be just fine, I have a great support system and I have you wonderful ladies. I’m blessed. Just know I’m always praying for you all. Once I go to my MO appointment on 4/14 I’m hoping to know a little more info and I’ll let you all know. I hope each one of you have a fantastic weekend. Happy Easter❤️
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@livinglifenow , @aj , @tougholdcrow , @eleanora , @eddiej Hey Ladies! Hope you all are having a great day. Well I made it through my divorce and had all my tests done and seen my MO yesterday. I had progression to 2 lymph nodes under my arm so treatment change for sure. Had genetic testing done I have the PTEN mutation so I’ll be taking TruGap and fulvestrant. Waiting for approval through insurance to start.
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@ssales13 I hope the new treatment gets this thing under control for a long time, though I know this must be scary. You have been through a lot, and now I hope that life offers you some happy and loving times. May your friendships be a blessing.
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Congratulations on navigating the storm. Hope the new treatment is effective with few to no SEs. I have been on fulvestrant for 4 years now and the injections become easier with time.
See my MO on Friday and may be joining you on the treatment change. My testing showed no actionable mutations, so most likely switching to Verzenio.
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@tougholdcrow Thank you for your kind words. @eddiej Sorry you might be going through a medicine change as well! Keep me posted. @eleanora Im sorry you are also getting ready to go through a medicine change. Keep me posted ok. I’m praying for all of you. I hope you have a wonderful day and I appreciate the kind words and encouragement! It makes me feel less alone🌸
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@ssales13 To echo @tougholdcrow , @eleanora, @eddiej , I sure wish you the best on the new treatment. Hopefully, this is the one that lasts a long time! @eleanora and @eddiej, I pray your treatment changes, if needed, also yield great results.
Thinking of you all and wishing you a wonderful spring! 🌸🌷🌺
Hugs, Pam 💗2 -
@livinglifenow Pam, thanks for the well wishes! I appreciate them.
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@ssales13 @eddiej @livinglifenow @tougholdcrow
Hope those who have had a treatment change are adjusting easily with few SEs. I'm still dancing around the issue of a treatment change. Scans showed small progession in 2 existing bone mets and 2 small new bone mets. Two have been radiated already and the other two are scheduled for radiation on 5/26. Since one of the new mets is on the left side of C1, I have a planning appointment next week to be fitted for one of those ugly mask contraptions that will be bolted to the table during treatment. Not concerned about it, as I needed the mask in 2022 for radiation to a met on the clivus bone. Advantage is that C1 is not within the skull, so there should be no need for 6 weeks of steroids like last time to manage dizziness, nausea and double vision. Yay!
I was fortunate to meet with an MO at Johns Hopkins last week for a second opinion. She was wonderful and knowledgeable, and I look forward to consulting her as I move on. She thinks I should continue on Kisqali, with either Letrozole or Fulvestrant. My Tempus results showed no actionable mutations, so there are only a few alternatives. She did not think I should switch to Verzenio, which was the initial choice of my current MO, because of my 6 month battle with diverticulitis last year and its impact on my GI tract. Will see my regular MO on 6/1 to discuss how we proceed. At almost 76, QOL is my priority.
Healing thoughts and hugs to all.
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@eleanora It sounds like your treatment is moving in the right direction. It’s always interesting to see two different MOs. I had two for the first year of treatment. Somethings they agreed on and some they were different. Of course, I made the final decision after doing lots of research. Like you, I am all about QoL.
Keep us posted on how you are doing.Hope everyone else is doing well!
Hugs, Pam 💗0 -
@eleanora , praying your radiation treatments on 5/26 go well. I’ll be praying for you. So far I’m doing ok on the TruGap and Fulvestrant combo. The TruGap keeps me close to the bathroom but I have been taking Imodium and that has relieved that particular side effect and the Fulvestrant makes me a little tired on day 2 but I call it a win. I see my MO on 5/19. Also My MO is at Hopkins and I really like her.
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@ssales13 Glad you are able to manage some of your treatment side effects. I pray that they continue to work for you and are tolerable.
Hope everyone is having a lovely day. Our weather today is absolutely perfect. Sitting outside at a restaurant right now after my ECHO. See MO and have infusions on Tuesday.
Hugs, Pam 💗0 -
@livinglifenow Pam, Thank you for the prayers! Appreciate them. The weather here is beautiful as well! Hope you enjoy the rest of your day! Praying that your MO appointment and infusion goes well on Tuesday 😊
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Thanks so much for your comments. I feel very fortunate to have made it this far, and to be in this group with others who understand the struggle. ❤️
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Hi all! I’m still in limbo - no change yet but truthfully, I would have resisted a change before my recent trips. DH and I had a great time in Paris and then CA. Now it is time to get back to reality. My biggest issue now is my breathing. It is compromised by the bilateral pleural effusion that has minimally progressed in the past 2-3 months. It’s still described as small or moderate effusion but I get breathless on stairs and hills. I prob have a thorocentesis in my near future. I spent Weds in the ER making sure I didn’t have a pulmonary embolism from all the air travel. The best news - my lungs and lymph nodes look clear! At least on the chest CT they took. I pray it is duplicated on the upcoming PET scan next Weds. My latest Guardent test shows a tiny amount of ESRI and no other actionable results so there’s that. Have to discuss results with MO.
I don’t know what the treatment change will be but I’m learning from you all. @eleanora First, wishing you lots of luck with the radiation treatments! I am also susceptible to diverticulitis so will be sure to note issues with Verzenio, if it is considered. Thank you for teaching me that! I also discovered in my research that Afinitor is not the best for folks with lung issues - my pulmonologist already expressed her caution to my MO about that med. @ssales13 Stacey, I have to research TruGap but fulvestrant was mentioned at my last visit. So happy to hear you are tolerating them well enough! Pray they yield only the best results for a long time! @livinglifenow Pam so happy to hear you are doing well and enjoying the sunshine!
I find it interesting that what with my “innumerable bone mets” I have yet to hear about any radiation. What precipitated the radiation treatment for bones Mets? I am asymptomatic so am thinking radiation is when pain is present? I will be asking at my next MO visit (I go to MSK in NYC) but wanted to ask you all too.
I am so appreciative that I have you all here. It so helps to not feel alone!!
You are all in my prayers!
My next MO visit is 5/18. I’ll be in touch when a decision is finally made - nervous but optimistic!
Take care 😘 juliana0 -
@eddiej It looks like you have a lot to consider. The only thing I can speak to is the bone mets. I had just one in my sternum that was causing quite a bit of pain. However, after just 4 HP treatments that met was gone. A few months later it came back so we did radiation. (I wasn’t in pain—yet!) It is my understanding that bone mets are typically radiated for pain or due to the location. Will be interested in hearing what your MO has to say.
Keep us posted. Thinking of you and all the wonderful gals on this thread.
Off to golf 9 holes. ⛳️Hugs, Pam 💗
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@eddiej Juliana, praying your breathing issues from the bilateral pleural effusion gets better for you and that your PET scan shows clear lungs and lymph nodes! Mine and your MO appointments are a day apart so will be thinking about you.Thanks for your prayers I appreciate them. I hope everyone has a great weekend.
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My bone mets have been radiated to cure pain, or if they are the only sign of progression, to avoid a treatment change.
The progression happened because the GI doctor did not properly treat the diverticulitis, so it kept recurring. This resulted in my having repeated breaks from Kisqali for a total of 3 months between June and December, although I remained on the Fulvestrant injections. I don't believe that Kisqali failed me, and my second opinion MO agrees.
My primary MO has said that, since I have no actionable mutations, Verzenio, Affinitor, and Xeloda are my only choices for next line. I see her on 6/1.
Healing thoughts to everyone.
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Hey, ladies! Saw my MO today. All of my bloodwork was perfect. That is always a relief. My ECHO from last week was fine. And, my infusions were completed more quickly than ever before. I guess the pharmacists weren’t as busy as usual so the meds were ready very quickly. Overall, a very good day.
Next PET is scheduled for June 1st.
Wishing all of you a great day!
Hugs, Pam 💗5
