The party’s over…

1356

Comments

  • exbrnxgrl
    exbrnxgrl Posts: 5,613

    Thanks, ruth! Finished 6 of 10 rads to the sacrum/pelvis today. This has knocked me down! My entire pelvic region and my legs feel like the consistency of very firm Jello. I feel very weak and fragile and flat out exhausted. Met with the RO today and he says this is typical and should improve. My dog has no understanding of why her long walks have vanished.

  • ruthbru
    ruthbru Posts: 49,024

    I am glad you are more than half done with radiation & hopefully will quickly regain your strength once it's finished. Yes, I can imagine your dog is not happy with the lack of walks! My dog strained a big muscle that wraps around his back and leg. He's is on short leash walks only, no wrestling around with his dog buddies, no playing fetch, no jumping into the car etc. until it's healed…..which takes 8 to 12 weeks…..he is NOT amused!

  • exbrnxgrl
    exbrnxgrl Posts: 5,613

    I may have mentioned it before but I am seeing the same RO (excellent doc) as I did during rads to my femur met, 13 years ago. When complaining about the lower body weakness and crushing fatigue, he did, with appropriate kindness, point out that I was 13 years younger the first time around 😂

  • ruthbru
    ruthbru Posts: 49,024

    Well, the good news in that is that you ARE 13 years older!!!

  • threetree
    threetree Posts: 2,409

    Exbrnxgrl - Am I remembering correctly, that they took you off of treatment not too long ago? You had been doing AI's if I remember, and then they decided that since it had been so long, maybe you should stop for awhile. Also, like Ruthbru, I am glad that you are more done than not with the radiation. I'm betting you will start to feel better and stronger as soon as that is done, and then you and your doggie can get back to business as usual.

  • exbrnxgrl
    exbrnxgrl Posts: 5,613

    Yes, you are correct. My long strange trip has been unique. 13 years on AI’s (tried ‘em all), never had chemo, and no progression until this. Rads has wiped me out and my Jello legs have really put a crimp in my mobility. No rads over the weekend but the infusion center is open on Sunday for my last loading dose of Faslodex, then last three rads sessions next week.

  • livinglifenow
    livinglifenow Posts: 240

    @exbrnxgrl I have seen many of your posts over the past several months since I have become active here again. I was so impressed with your long NED status and am saddened by your recent diagnosis. You have been through a lot in the past few months. As you can see by my signature I was NED after 2 months of HER2+ treatment (no chemo). Then I took a "treatment holiday." Maybe not the best decision, but I felt better than I had in years…. I also had radiation my first go-around and had very few side effects. I am scheduled for a "planning session" on Tuesday to be followed by 5 courses of rads to the spot in my sternum. I sure hope that I don't have too many side effects this time but, like your MO said, we are much older now.

    My biggest problem has been horrible heartburn the past week or so, pretty much 24/7. I've never had it that bad before. Perhaps the soft tissue mass is pushing on some nerves or something, since no GERD/heartburn medications have any effect. I'm hoping the rads take care of this problem too.

    I certainly understand your exhaustion with being a constant patient. I thought I was only signing up for HP infusions every 3 weeks, now rads! Well, I hope they do the trick and I reach NED again! Although I will still be doing the HP infusions every 3 weeks, that is much more doable.

    Thinking of you and wishing you a return to better energy levels once radiation is complete.

    Hugs, Pam 💗

  • threetree
    threetree Posts: 2,409

    Exbrnxgrl - Faslodex can make you very tired also - the combo of that plus radiation would give you a double whammy. I'm so sorry that you are having to deal with all of this now. I think things should smooth out a bit though as time goes on. Wishing you all the best.

  • livinglifenow
    livinglifenow Posts: 240

    @exbrnxgrl It sounds like you are very weak and not feeling well at all. I can understand your decision not to get the Faslodex. Sometimes it is all so overwhelming.

    I remember getting my brain MRI last year. It was the last of a slew of tests and biopsies prior to starting my treatment. After the tech finally got a needle into my extremely worn-out veins (it was very painful), I just broke down and cried. Took a while to get that scan done.

    Hope you can get some much-needed rest and recovery—both physically and emotionally.

    Hugs, Pam 💗

  • ruthbru
    ruthbru Posts: 49,024

    Oh Caryn, I am so sorry. I so hope you can get a bounce once radiation is finished. 💓

  • salamandra
    salamandra Posts: 778
    edited March 31

    I'm proud of you that you made it to your appointment to give yourself the best opportunity to get the treatment and I'm proud of you that you walked away when you recognized that it wasn't right for you now.

    I don't see how you could possibly know what's next, but from what I know about you from these boards, I believe you can trust yourself to take the steps, gather the information, and consider all the factors, to keep making the best choices for you as each decision comes up.

    Sending you all the best vibes I can shove through the ether <3

  • ruthbru
    ruthbru Posts: 49,024

    I am so glad rads are done & that you are out walking your dog, getting groceries etc.! By walking & doing other 'normal life' things, you WILL get stronger! Eat whatever you can stand…..don't worry as to whether it's 'healthy' or not.

  • exbrnxgrl
    exbrnxgrl Posts: 5,613

    Good morning,

    Rads recovery continues to be up and down. My legs feel a bit stronger but still compromised. I swear that an alien has taken up residence in my pelvic/saddle region. It is not so much painful just super uncomfortable. Second day back on Ibrance and anastrozole. I fervently want to complete an Ibrance cycle . Since this is my third try, hope it’s the charm.
    I’ m going to move away from this thread as an “all about me” thread is not my thing but I can’t say enough how grateful I am for all of your support during a time when I was absolutely plunged into shock after over a decade of complacency. ❤️

  • threetree
    threetree Posts: 2,409

    Exbrnxgrl - Glad to hear that things are improving, even if slowly. I'm sorry that all of this has happened to you, but I like to think that with time, you will move into a more relatively comfortable and steady situation. Take care.

  • ruthbru
    ruthbru Posts: 49,024

    Please don't move away from this thread, Caryn, if your reason is because it's all about you. We who are your friends are grateful that you started it so we can have a place to catch up with what is going on. (Otherwise we will each have to send you PMs & you will have to spend a lot of time responding to them individually 🙃).

  • cowgirl13
    cowgirl13 Posts: 813

    Please don't move away.

  • exbrnxgrl
    exbrnxgrl Posts: 5,613

    I am waking up for the second day in a row in the beautiful Santa Clara Valley… in the hospital. Too much stuff going on but my pain is almost controlled, my appetite is slowly returning. And I pooped👏. Will try to write more later. but this is quite overwhelming

  • chicagoan
    chicagoan Posts: 1,383

    exbrnxgrl-So sorry to hear this and kind of shocked. You were stable for so long, it's hard to believe this is happening. Will watch for your update when you are able. Glad that things seem to be on the upswing. Take care.

  • sf-cakes
    sf-cakes Posts: 683

    Thinking of you, exbrnxgrl. Good to hear that they've got your pain under control, but hate to hear you had to go to the hospital. Please keep us updated ❤️

  • tougholdcrow
    tougholdcrow Posts: 477

    Hang in there, @exbrnxgrl . We're rooting for you.

  • ruthbru
    ruthbru Posts: 49,024

    Glad they're on the right track with pain control & that your appetite is better. Hopefully those two improvements will allow you to get some rest & help with your energy level. 💓

  • ruthbru
    ruthbru Posts: 49,024

    Not overtly political, but something to reflect on nevertheless.

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  • exbrnxgrl
    exbrnxgrl Posts: 5,613
    edited May 15

    Here’s the choice; chemo or hospice. Neither sounds appealing.

  • tougholdcrow
    tougholdcrow Posts: 477

    @exbrnxgrl Gosh, that's rough. No actionable mutations or anything? I went through chemo and it was ok. I'd do it again if I had to. At least you're done with radiation since I know you were really struggling with that. But I really feel for you.

  • chicagoan
    chicagoan Posts: 1,383

    exbrnxgrl-What?!? It doesn't seem like there has been a chance for Ibrance to work. Do they think that your cancer is no longer responding to AI's? This makes no sense to me b/c it seems you have barely tried any of the modern treatments. Second opinion time?

  • harley07
    harley07 Posts: 576

    exbrnxgrl - I’m so sorry to hear this. Perhaps a second opinion (if that is what you want) would offer a different perspective? Sending hugs.

  • ruthbru
    ruthbru Posts: 49,024

    Oh Caryn, I am so, so, so sorry that those are the choices. Would you maybe be willing to try chemo, knowing you could quit if it's too horrible?

  • threetree
    threetree Posts: 2,409

    Exbrnxgrl - I am so very sorry to hear of this development! There are still a lot of drugs out there and with more time, good things could happen. 🤞 When I became stage 4, they put me on Verzenio and Faslodex. After 2 months, scans still showed some small progression and the onc I had then was ready to pull all the drugs and put me on chemo! Just from reading here I knew that it could take several months before the benefits really showed so I asked for more time. After swearing that 2 months was plenty of time, she reluctantly gave me one more month, after I pretty much insisted, and then she went on maternity leave. During that time I saw her "sub" and really liked him. After that extra month (more like 6 weeks) the new scans showed that small patch of progression gone, the new onc said all was well and that yes, it can take a few months or more, and I have continued on those drugs for 2 years now. (I switched to that onc permanently also.) I agree with the idea of getting other opinions and I think Chicagoan is on the right track wondering if you've had a long enough time to really see if the Ibrance works. There are other AI's too. Please know that you have all of us here pulling for you and "in your pocket". Wishing you all the best and sending a hug!

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