My Husband, My Life, My Love, My Family, My Cancer
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Warming it with a warm pack can help.
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I've been away for too long! I can't keep up either, it's all I can do some days to get out of bed and log in for work.
I'm exhausted, but I cannot sleep. I've been like this for days it feels like. My mind going in too many directions.
Found out this month that the mets are in my bone as well. The original PET didn't pick it up, but the follow ups show my left illiac bone healing.
I saw it on MyChart in black and white..."bone metastasis". Why does it feel like I'm reading about someone else still when looking at my info?
So I'm not sure how to process this. The mets are more extensive than first thought, but they are healing so that's good.
Wondering if I should ask for a bone scan now. Is that considered more sensitive than a PET?
love and Hugs to everyone
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Tangandchris - yikes - so sorry about bone mets. Put in a call to MO for a more definitive answer.
We are flying to Denver tomorrow for our best friends daughter’s vow renewal and reception. The wedding did take place a year ago with 10 people in attendance. Both our daughters will be there. While in Denver my hope is to get some marijuana edibles to try. My oldest daughter is in charge of finding a knowledgeable dispensary to help me find something to help with my back pain. I’ve read in detail the marijuana topic on these boards and have a good basic understanding. Back pain is the worst it has ever been and I’m getting minimal relief with tramadol. My PCP is willing to take over pain management for me. Can’t get in to see pain management doc until and of August and that’s just for a phone conference. Soonest in person appointment was end of October and I’m an established patient! I’m doing a steroid burst right now to help with inflammation and thus pain. Should make getting thru airport easier as well rest of trip. Started on Tuesday and can already feel less pain. Unfortunately can only do a burst a couple times a year. Have a fabulous weekend my friends
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Morning all.
tangandchris- I was just thinking about you !!! Really!!! I was wondering where you were. Sorry it is in your bone too.
Where else was it? Not on your profile and I forget. I have only had 2 bone scans in my almost 4 years of MBC. My MO seems more concerned about following my liver than the bone. But, bone scans are iffy with me, as I have rheumatoid arthritis too. You will probably be put on a bone strengthener like Xgeva or Zometa. I am on Xgeva. My Port used to give me fits too. I have had the clot buster several times. And the yawning, coughing, repositioning. But, since I am now on Eliquis (for the PE blood clot) the Port gives blood easily. All I am doing is getting it flushed for now. But they want to keep it in, in case I need it for chemo I guess.
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my Port is how they get all my blood. My veins are awful. good to see you tang….. welcome back. waving to candy! Rosie red…..Shetland ..Moth…..Goldens…. 💐💐
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I love my port too. When I have CT or MRI, the port is usually accessed at the cancer clinic but the cancer clinic told me to ask for the venous access team so that I don't have to have two extra appointments. I will see how this works because Peter doesn't always know what Paul is doing if you know what I mean.
Have not got out yet but heading out shortly. I got a new wig that I need to break in. Kind of cute because it is flatter and a bit heavier in the bang with shorter sides as well. Really cute I think.
I am braving actual shorts today. I usually feel funny in them because my legs are ugly with scar tissue colouring at the knees when I took that fall earlier, I want to say two years ago I believe but I decided no one would be looking at me and I am willing to walk around with a funny neck fan. I want to see if it keeps me from getting the lobster face and really hot skin from just a normal walk. We will see. I even thought about wearing both fans, one in front and the other with the fans blowing the back of my neck, we will see about that as well. Not hot enough to need those I do not think.
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Hey ya'll. So this is not cancer related, per se. But I need to vent. I will try to make a long story short.
I had a small rotator cuff tear back in early 2017, before the cancer diagnosis. I was getting PT treatments. Then BAM the cancer and PT stopped (new priorities, ya know). So a couple of months ago I went back to the ortho doc and said I am looking at QOL with my continued shoulder pain. We did a MRI to see how things looked now. Now I have the torn rotator cuff AND a torn labrum (the cartilage that keeps the ball in the socket). I am once again doing PT. My PT therapist said today that, at some point, I will need shoulder surgery. That the labrum doesn't heal itself. I told him that surgery was probably not going to happen--- Ibrance low white counts (or the next treatment low counts), the bone mets, and now the blood thinner (for the PE I had last month).
Also, I have had low back issues for YEARS. So, yet again, QOL issue, so doing PT on the lower back and hips too.
He worked on my hip today, and now I am home with a heating pad on my groin. Fun fun with hot flashes. LOL.
Just frustrated. I am 1 big pain. And nothing to do about it, but PT. Just frustrated.
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candy-678: I had a rotator cuff/labral tear on left shoulder and was advised to do 6 months of conservative therapy (PT) before I would be approved for surgery. I could no longer hold my arm above my shoulder and putting on a coat was a real trial plus it kept me up most nights. So I was losing function in my left arm as well. My MRI was read as minimal tears but surgery actually found more extensive tears than visualized. It is performed laporoscopically and was done as OP surgery. Minimal blood loss with the surgery. I have no regrets though recovery was a slow process and I was out of work for 6 weeks. There are work arounds available for you if you should decide to do the surgery and you should ask about them because your PT's advice is true, it will not heal on its own.
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Candy,
My goodness. That is a LOT to handle. You most certainly should complain. I am just sorry that you have to go through yet another thing….like you need that, right? Prayers for you, my friend.
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Betrayal- Work arounds? for surgery? I have not discussed surgery with my ortho or my MO yet, but they would want me off the cancer med Ibrance to raise the white counts, right? Before surgery of any kind. Also, off the blood thinner for so many days before any surgery, right? And I had a PE in May. And I may be looking at progression of the liver mets right now-- scans tomorrow/MO appt Monday--- and maybe a change in treatment plan for the cancer. So I do not see surgery anytime in my future. I have had the rotator cuff issue for 4 years now. Unsure how long on the labrum tear. So not acute injury, but been there a while.
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in candys pocket for Tomorrow !
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In your pocket as well, so many variables to consider to treat your shoulder while looking out for PE and possible lung progression.
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Definitely in your pocket tomorrow Candy, I'll bring the timtams, hopefully there'll be a way to get you that surgery you need, don't give up hope.
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In your pocket tomorrow Candy! I believe that two others have scans tomorrow. I can't remember who or if for sure they're on this thread. I can't keep up
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mara- No lung progression that I know of. Looking at increases of liver mets.
dutchiris-- It is Rabbit and Aprilgirl from the Ibrance Thread that are having scans tomorrow too.
Kittykat- Timtams sound good !!!
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candy pocket duty!!! Chocolate chip cookies.
Tany
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in your pocket for scans, Candy. I hope there's a way you can get your shoulder fixed. Maybe your docs will have news that surprises you. Crossing fingers.
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Candy, I'm also in your pocket for your scans tomorrow and for results (with MO?) on Monday. Hoping for a clear answer so you can have a definite plan on continuing I/L or a change. The not knowing has really weighed on you. Once you get your results it might be worth discussing your shoulder dx with your MO, keeping it open as a topic for future visits if you feel like it's getting worse. Good luck tomorrow. 🌺
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Hi to all and along for all needed pocket duty providing Love In Needed Times, or L.I.N.T. Pocket lint.
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In anybody’s pocket for scans who needs me.
Candy, I’m sorry about your shoulder. Whenever I get scans and am supposed to raise my arms over my head, it hurts. I have shoulder problems but no tears.
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Candy - more confirmation on how life as cancer patients suck in so many ways. Hope pt gives you some relief. Pocket duty for scans. Do you have a palliative care team? Maybe better pain relief from that perspective. Something I’m considering.
Off to the airport
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Candy, I am on pocket duty for you. You are there for so many others, and I am sure all those people will be sitting in your pockets for you today. Those pockets will be bulging!
lynne0 -
pocket duty! Checking in for candy! Lemon bars in hand. Sending gentle hugs.
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Reporting for pocket duty!
Speaking of shoulders I went for massage with my RMT this morning and we worked lots on the left shoulder. Haven't been for massage since last Nov when we went into lockdown. She found a bunch of knots and areas to work on and prescribed exercises and stretches. So glad I went. Thinking of trying to get into a pool at some point and do some backstroke- I think that would feel nice too.
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Home from my scans. Long day with the drive and the tests. Now for the wait--- over the weekend. MO appointment Monday. Thanks for the pocket duty. Needed again Monday for what the scans show.
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Jumping in for pocket duty and hoping results are boring and not cancery stuff.
I’ve got Bone and CT Body on Tuesday but have no reason to be particularly concerned. I was a little on edge recently about occasional hot flashes/night sweats coming back, then I remembered it’s summer in Texas.
More progress on the move with lots of big furniture moved from upstairs out to the garage. After we breakdown the pool table and our houseguests move out, the house could be fully cleared and cleaned in less than 2 weeks, even with medical stuff and lazy days.
Other than that, I resold my music festival tickets for Las Vegas in September, still feels too risky for me but an item from my bucket list is back (Jaws on the water), which I am considering.
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Have not heard from Sondra about her MRI from this week. Hoping for good news. How about Moth's scan?
I am going to still try to keep up with everyones scans with my own list next to my computer, but do you all still want me to post, on Sundays for the upcoming week, the list I have?
Hope all have a good weekend. Not much here.
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Candy, I do think you should keep posting like you do about upcoming scans and such. I know I don't always talk much but I'm always here.
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Mae - good call, Vegas in September is so hot as it is, but this year looks like a whopper already. We were tentatively planning Palm Springs for a few days in early September but I think we may leave California to early next year instead and go... somewhere else!
Candy - MRI was totally uneventful, pretty standard stuff. Of course work has picked up considerably the last week or two so my right shoulder is tense and achy (my mouse hand hahah) and as usual you start to wonder if its new mets. I've had this muscle tension before, though, so it usually means I need to make time for more stretching and core strengthening which Ill admit I had let slide recently. I have MO/bloods/injection (my last Xgeva for three months!) on Monday.
Other Half went for a walk Thursday and came home an hour and a half later to inform me we need to be in Tulsa next May as he bought PGA Championship tickets when the sale went live. If anyone has any solid recommendations (food, museums, shopping) for that area of the world, I am all ears - I see there are more than a few good aviation/space museums around and we like to road trip when we do golf tournaments, so driving up from Dallas is likely but certainly not in a straight line!
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dutchiris-
Sondra- Happy for the uneventful scan for ya.
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