2017 Diagnosed-- A Place To Share "Whats Next"
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pink_is_my_colour—. Thanks!!
Today was a simulation for rads. Once again I have temporarily marks on my chest covered with a clear product to help them not wash off in the shower.
Tomorrow will be the real deal.
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Your 2017 sisters will be with you in spirit tomorrow, DogersGirl - and for every day as you "do the rads thing" again. It strikes me as both a blessing [in that you know what to expect] and a curse [that you're signed up for Act II] that you've been down this road before. But as we all repeated then, as we do for you now, this is only temporary - and it's doable. You got this!
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Scottie719– thanks! I am very much looking forward to rads tomorrow as it will be killing cancer butts. I can’t start Ibrance until rads are done. So diagnosed in December as Stage 4 and haven’t started anything to fight back. Tomorrow, that all changes. Not looking forward to SE that may come from treatment but ready to zap those cancer cells in my thoracic spine and kill them dead. ( like the Raid commercials)
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We are in your corner DodgersGirl! I guess I didn't realize that spinal rads would be done from the front of your body. I guess it would make sense depending on where the cancer is but I just never thought about it. Praying this does the trick and your side effects are tolerable.
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Legomaster225- I was worried I would have to be on my belly for rads so was pleased when RO said I would be on my back. Can’t figure out how they hit my spinal vertebrae but not my lungs or esophagus. RO said it’s all about proper setup
RO said the once 1 mm of cancer is killed off, I should see some pain relief which sounds wonderful to me right now as my pain meds did not touch the pain tonight. And I need my battle sleep tonight. (Heck with beauty sleep, i’m headed to war)
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DodgersGirl - I hope the first rads session went well today and you're resting
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Moth— thank you for asking and thinking of me!! So nice.
1st rad session went well. I was surprised that it was different from early stage BC rads. I was on a bench on my back, like before. But unlike before, I didn't know when the rad part was happening. The machine whirled around but it was much quieter. Before, I knew when each part was going on. This time I wasn't even sure when the rads started.
When it was all over, I asked about it. I was told the rads shoot from all over, even under the table. She said whatever it needs to do to get to my vertebrae and miss all the other parts nearby. That's amazing
Pain that I had in November that led my to the PCP returned yesterday. I think the T8 pushes into the nerve root and I get pain under my left sided ribs. Trouble is, if I lean back in a chair, T8 hurts. So I lean forward and the ribs hurt. Cannot get comfortable. Can't sit or lay in bed. That pain went away in December but returned yesterday. Hmmmmph I think it's a result of sitting at my computer to work. When I was off for the holidays, I wasn't sitting at a desk reaching over to a laptop stretching my back. Returned to work and after a full week, that pain returned. Wondering if I can continue working? The pain is awful.
RO said I might get a break from the pain after 2 rads sessions so I am really looking forward to Monday.
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another update— full week of rads next week. Tuesday is a bone biopsy. Still waiting on the results of my pelvic area MRI.
As I wrote before, pain right now is significant. On the good side, I was able to get all laundry done and put away. Started home delivery for groceries. It’s a great way to make sure we have food to eat while not having to figure out how to shop and carry in bags. I appreciate the opportunities we have in today’s world with all the apps and home deliveries.
Again, thank you all for being with me on this journey. It’s not a journey I wanted to be one but it is what it is. My hope is by sharing all my experiences, I can help someone in the future even after I pass. Be given lemons and find a way to have lemonade. And I don’t feel alone because of you all. Hugs to each of you
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DodgersGirl,
I thought about you yesterday and figured that you were resting. Glad that things are underway but sorry to hear how the pain came back. I hope that it goes away soon, as your RO is suggesting.
I started having groceries delivered while doing chemo, and still use the service from time to time. I live alone and found it so useful to be able to order exactly what I wanted, as opposed to having well-intended friends bring me things that I really couldn't eat. I have a three-level townhome (not what you want while in treatment) and so I had the delivery people come in and take it right upstairs and into my kitchen, while I waited downstairs to lock the gate after they left. I also made good use of Amazon deliveries for basic household items.You are so right about the conveniences today!
Your personal journey that you are sharing helps us in the here and now. Your strength and perseverance motivates me to stay strong in the battlefield of the mind that cancer makes us fight, on top of the the physical issues it creates. You are never far from my thoughts, these days. Please continue to keep us posted.
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Today was Rads #2 followed by an unexpected RO appointment. I had to call RO’s office due to pain I was experiencing all weekend. He had told me there was a good chance the pain meds I was on wouldn’t really touch the bone mets painand to let him know if I needed something stronger.
Sunday I could not get comfortable. No sitting position was tolerable. Back felt like a had a rock covered with needles in the thoracic area. Hurt to lean back into a chair back and ribs hurt if I leaned forward. Not much sleep Sunday night.
Had to use a wheelchair to get to appointment because I thought my legs were going to collapse. Not much fun.
RO prescribed 6 days of steroids. Said they would help within 12 hours.
So here I am tonight feeling much better. Pain isn’t gone but I can tolerate it right now. Don’t know if the relief is from the 2nd rads session killing more bone mets or the steroids. Doesn’t matter. It was nice to watch tv without squirming in pain.
Tomorrow morning is rads 3 followed by my bone biopsy. Never a dull moment on this adventure.
Bone biopsy is out patient. Don’t expect the procedure to be difficult. Curious to find out if cancer is the same as before or if it’s changed. That will be good to know moving forward.
I am craving a milkshake and think I may just ask for one after we leave the hospital tomorrow.
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Holding onto you Dodger. Holding you tight.
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Wow DodgersGirl, you have been through a lot the last few weeks. I'm so glad the steroids, or the radiation helped your pain. I agree with you, it really doesn't matter which one helped today. You might be up for a movie marathon tonight with the steroids. I remember being wide awake after chemo days from the steroids, at least after the benedryl wore off.
Hope you get quick results from the biopsy so you know what you're dealing with. Good luck with the rads tomorrow. Keep hitting back! We are in your corner.
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Legomaster225– steroids were in play last night. Not very sleepy. Cat napped here and there. It’s not nerves. The biopsy today has light anesthesia so it really should be a walk in the park.
No pain this morning. What a GREAT feeling. It’s like being normal again!
Rads 3 this morning before biopsy. No idea what time I’ll be home. Hope it’s close to early afternoon
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Great news that the pain has subsided. What a relief!! Good luck with the biopsy. Maybe you can get a quick nap in afterwards.
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I sure hope you had that milkshake, DodgersGirl - and that you indulge yourself with whatever else is calling your name these days. Go for it! Thanks for letting us know the pain has been booted to the curb, and here's hoping that today is another step in the right direction.
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dodgers- I hope your biopsy went well, with no new pain and speedy results. Thinking of you.
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Home from bone biopsy. I had a rad treatment first then headed over for the out patient test. It was a CT guided bone biopsy. He used the drill a couple of times taking a couple of bone samples and bone marrow. Bandaid covers the spot. Spent an hour in recovery.
Feels like a long day at the hospital. Pain is still much better than the weekend so that is a plus. Think I would like a nap!!
Did not get the milkshake. We stopped and ate a late lunch at a new place in town. Maybe a milkshake tomorrow after Rads #4??
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Dodger's, MILKSHAKES! Now I can't get that damn song out of my head, My milkshake brings all the boys to the yard... Make it stop! (be better, Dodgers, praying for some releif for you!)
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Runor—. And they're like it's better than yours
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Dodgers, you are so NOT being helpful. Damn. It's stuck again!
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DogersGirl...been following your posts...glad your pain seemed to resolve with the steroids,although I do remembered being wired all night from using those during chemo. It seems that you've had another day to grab that milkshake?
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Scrafgal— no milkshake today. ☹️ Feel like I have the flu, but don’t. Body aches and feel run down. Yesterday wiped me out.
Did manage to make a run to a box club store and then rads #4.
Steroids are making my sleep lighter at night. But on the positive side, they are helping arthritis pain and back pain.
Still waiting for results of the pelvic area MRI. It should be back any day.
Returning to work tomorrow. Wish me luck.
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yes...Good luck tomorrow!
I wish that you didn't have to trade off sleep for pain relief but it is hard to sleep while you are in pain... so, the steroids at least have an upside.
Speaking of work...heading to the classroom in 15 minutes to teach my MBA class...
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🍀
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DodgersGirl, happy to hear your updates and glad the pain better controlled now!
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Dodgersgirl... So sorry you moved to stage 4 now. I hope you get Ibrance. I have used it for two years now. Compared to chemo there is much easier. And...lots of girls in the stage four threads seems to use it for years and years. My onc told me between 80-90% showed really good and loooooooong results from Ibrance AND if Ibrance stop working there is possible to switch to other CDK 4/6 inhibitators and get effect from them as well...
🙏🏽
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Anna33 - thanks for the info. I have Ibrance sitting on my counter, waiting to start once I finish spine rads. Sure am hoping to be amount those who have years of great results!
Moth- thanks for the kind words!
Rad #5 is now completed. Half way done. 5 more to go. Back feels much better. I am now to a point where I can start to believe the pain can dwindle away!!
Still no results back from last MRI. Bone biopsy sight is still tender but looks good on the surface.
Rads # 6 is tomorrow. Then get the weekend off.
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Scrafgal -
I am wondering if you can post the details of what the blood tests for cardiac function are?
I know GLS and LVEF are both ultrasound/echo procedures. But what specifically is the blood test called?My resting heart rate has been steadily climbing over the past 6 months & I don't know if it's just stress + lack of exercise or if something else is up so I'll be speaking to my dr about it.
thank you!
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Moth
I have not had the test yet, the first one will be in May, and I don't recall the name of the test (if my cardiologist told me the exact name). It is very new and based on research yet to be published widely. I do know that this test is for something (a protein?) that the heart emits into the bloodstream that actually starts to rise BEFORE there is any significant impact on GLS (or certaingly LVEF). Do you have a cardiologist already? If so, your cardiologist probably knows or could contact the onco-cardio physicians at MD Anderson and find out more about the test, if they are not aware of it. I am sorry that I can't recall the name of the test. The onco-cardio area at MD Anderson is very good but it is almost impossible to get a quick answer to a question via email, or else I would ask now!
If your resting heart rate is rising, it could be related to a change in your exercise habit. My cardiologist told me that the RHR is a good sign of overall health, and he liked the fact that I track it with my fitness monitor. If your RHR is still within the normal range, then likely there is nothing to worry about. My RHR hovers between 57-62..which he thought was great for my age (53). He said that for my age, even 80 would not be considered abnormal, especially if the person is not very active.
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Been experiencing intense pain in right hip/groin area since Wednesday afternoon. At first, I chalked it up to pain from bone biopsy procedure. But it wasn’t going away even from pain meds. I mentioned it Thursday to my rads technicians as I was wondering if it was a blood clot?
Friday morning I was having a hard time walking. That spot really hurt.
Friday afternoon I found the MRI of the pelvic area posted on my patient portal. Blah, blah, blah numerous bone mets visible everywhere. Sigh. The largest bone met is on the right acetabulum. Well, I had to look that bone up as I had never heard of it. Seemed to be part of the hip in the same area my deep pain radiates from.
Wondering if I was at risk of a hip or femur fracture, I called MO’s office. His nurse talked with me. Said MO had already told her to send my results to an orthopedic surgeon and to my RO. Nurse said MO wants orthopedic surgeon to see if I need help stabilizing the bones. That sounds really freaky and sounds like surgery. Sigh
RO’s office called Friday afternoon. I go in Monday for scans and simulation for a new rads plan on the right acetabulum. Another sigh
Today I am walking with a cane as I am afraid something might snap and down I would go.
There is nothing easy about the early months of a stage 4 diagnosis.
One day at a time.
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