The party’s over…
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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.
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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!
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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 😂
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Well, the good news in that is that you ARE 13 years older!!!
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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.
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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.
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@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 💗
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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.
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I walked (as well as I can walk) out of the infusion center today without getting my Faslodex injections. I just couldn’t do it. I never get used to unpleasant things. I just become more and more fearful. I also can barely walk as my legs are almost too weak to hold me up. I don’t know what will happen going forward.
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@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 💗
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Oh Caryn, I am so sorry. I so hope you can get a bounce once radiation is finished. 💓
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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
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Thank you all again for being so kind.
As of this past Wednesday, I have finished rads. It has not been good and took me by surprise because it was a breeze when I had rads to my femur years ago. Yes, this was close but definitely a different area and different number of treatments. Besides exhaustion, everything in my pelvic area (still have all the bits) feels weird and just icky, though not really painful. Legs still feel like jello and a walker was delivered. This has made me feel much more comfortable moving around the house. I try to stay downstairs once I’m down, but sometimes my bed is the most comfortable place. The pain from the bone met itself seems to be getting better or at least not occurring as frequently. My gait is still pretty amusing. I take my dog on slow short walks and I realized that I look a bit drunk as I walk in a wide waddle 😂. What a sight! Super skinny woman waddling in a wide stance… fortunately, I’ve lived here for 18 years and most of my neighbors know me.
My medical group has a small satellite office near my home and I was able to go there today for lab work and the pharmacy. Lab is in preparation for re-starting Ibrance (hope I can make it through a full cycle without some other medical calamity) . Since I know I can’t do Faslodex, I’m also going back to anastrozole, which was my first AI thirteen years ago! I was actually feeling a bit better in the morning and even did a short grocery run. Shopping carts are wonderful substitutes for walkers. I’m all stocked up with a good variety of foods I hope I can eat. My appetite is still poor to fair and I am looking a bit too skinny. I weigh two pounds more than in my Pan Am days and that was way too thin. After I quit flying, lawsuits took care of the weight issue but we were regularly weighed in my day.
Have a wonderful weekend 💐6 -
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.
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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. ❤️3 -
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.
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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 🙃).
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Please don't move away.
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