Bone Mets Thread
Comments
-
Hi everybody. You all sound like you are doing pretty well. I think I'm getting ready to fall asleep, so I'm going to go with it. I just wanted to let you know that today was not a very painful day. The port area still burns, but definitely a lot less; and that is going in the right direction. Tomorrow I'm going to change the dressing and am looking forward to seeing it and cleaning it. I think it will make it feel a lot better.
I have been absolutely dreadful with my diet, but I will just try again tomorrow. I just ordered a FitBit, which the ladies on the exercise thread thinks is wonderful as a motivator. I'm hoping to be able to do some light exercise throughout chemo. I'm tired of being a wimp about pain. Flares are exempted though.
Take it easy and be well. See you tomorrow.
0 -
good morning all
Dune. - hope you got some restful sleep. Glad port is feeling better. You are not being a wimp. Chronic pain can suck the life right out of you. I think you are being very strong sand courageous. Hang in there. We got your back.
Deanna. Hope the pain is better and you are having a great day.
Looks like today is going to he another beautiful day and I am thankful to God to still be alive to enjoy it. I feeling much better. Hope to get outside and hang eith my ds's today. I def can't play basketball or baseball or mych anything else they are doing But just being there, watching , talking and laughing is major important to ds's.
So someone tell me something fun they got planned for this weekend. Love to hear how y'all are doing and get inspired by y'all's adventures.
Hugs too all.
0 -
Not all that exciting but had my coffee on my balcony with my cat and dog waiting for my bf to arrive this morning. The weather is simply beautiful - the sun felt so good. And, did my groceries without my cane today! So nice to be able to walk without it once in a while.Patty - so nice to hear you're feeling better.
Leah - good to hear from you and hope your achy bones are better.
Stupid question maybe but is Claritin good for bone mets pain?
Linda
0 -
Thanks for the good wishes.
I did take Claritin but I think the combination of the Zometa with the neupogen was just too much. Fortunately, today was much better. I had another shot this evening so we'll see what tomorrow brings.
Leah
0 -
Hi All,
Patty - agree with you, my mood is so much better now that the weather is getting nicer (Finally). Beautiful weekend here. I took a walk today and tomorrow will go to my son's baseball game. Spring brings a lot of sitting at baseball games for us. I'm happy to be at them all, though I do usually pick which ones I go to.
Dune - I had a fitbit and loved it! I lost it one too many times though
. I got a new one for Christmas (just the clip on kind) and embarrassingly haven't started wearing it again yet. But now that I'm out and about a little more, I will finally start to. I know my # of steps are way down than pre dx, but anything is better than nothing.Leah - Like Deanna said, I use Claritin before my nuepogen shots and it def. seems to help the bone pain from the shot. I take the night before the first shot and each night when I get a shot.
Jean - sounds great. We started in Sitka and went to Tenakee Springs, Hoonah, Glacier Bay, Haines and Juneau. We were lucky with our weather and did take a short swim in the water to say we did it! On our way back to Juneau, we actually had to peel pack the layers to a tee shirt. We took a very small boat though, it wasn't full, but there were only 20 passengers, 11 in my group. Ronnie, too bad I didn't "know" you then, we stopped by Seattle on the way home for a few days and loved it!
Kiwi - wondering how your new house is coming along?
Have a great rest of the weekend.
Meegan
0 -
Hi Meegan,
It's coming along - we can nearly see the floor in most rooms!
I've been flat out at work; got a project I've been chasing for 3 years. That's the good news. The bad news is that it's like a month's worth of work that had to be done in about 10 days. So I haven't been much help at home. My husband has made good progress however, and the house is lovely.I have the flu...upset tummy, sore throat, runny nose, ache all over stuff. Not fun. I know this was said on this thread before, but I'm gonna say it again...if we have Stage IV cancer, we should get a pass on the flu. And yes, I know I have no reason to whine. I just hate being sick, especially when I have to travel this week and give evidence at a hearing (it's about getting a permit for a facility, not court!).
Patty - glad you're feeling better and hope it continues!
Dune - sending you good vibes.
Love reading about upcoming travels. Can't wait for the tales and pics afterwards!
Hugs to all,
Terre
0 -
Thanks for the well-wishes. Been a tough day for me. I'm scared to death of the infusion chair. In fact, I am convinced it will kill me, always have been. Not much choice at this point. So, the port over the left breast hurts, and the right side is cording and continuing to grow ugly red burning tumors. Plus I had a mild flare. Enough already. It's quite enough to get myself psychologically prepared for Monday. So I had a pretty good breakdown that got started again every time I looked at my breasts, and since I was trying to clean the port wound, I had to keep seeing. I think I'm going to get a yummy snack.
0 -
Dune - did you have your yummy snack? I hope so, and hope you enjoyed it. You deserve a few treats. I would be scared too, never had chemo yet, but if it's any comfort to you, I will be holding your hand in spirit whenever you need it. I'm sure we all of will.Hope you have something nice to do on Sunday before you go on that chair.
Big hugs coming your way. - Linda
0 -
Linda - grocery shopping without your cane .., now that's exciting !!! Love it !!
Terre - I agree let's get the skip the flu pass. Bless your heart. You certainly have your hands full.
Dune. I agree. We will be holding your hand Monday. Hope you get out and enjoy tomorrow. I hear ya about being scare if the infusion chair. You got to think of it as your lifeline. That this med is gonna kick those cancer cells to the curb. I know easy to say from my recliner, it's been 12 years since I had chemo. Truly it's like anything else on life it's all about your attitude. Choose what you are thankful for and focus on that. I got several poster board in neon up everywhere to remind me of what I am doing this for and any inspirational thing I want to put on there. Hang in there you can So do this.
0 -
Dune, I've never had chemo either and am scared ##less of those big soft recliners too! Many times in life I have found that the anticipation of something I fear and dread is worse than the reality when it actually happens. I hope this will be that way for you. Try to stay busy tomorrow with something you enjoy if possible. You've been really brave so far and should be real proud of yourself.I'll be holding your hand on Monday too, for whatever it's worth.
0 -
Sending lots of love and good wishes your way, Dune, today and every day, and especially on Monday.
0 -
Dune, I know it's very scary now, but I honestly think you'll be surprised at how "normal" you feel immediately after your chemo infusion. Has anyone told you that you might feel icky and flu-like for a couple of days starting about two days after your infusion? That's fairly common with the taxanes, so best to maybe try to keep your calendar clear midweek (with maybe a good book on-hand), until you see if it affects you that way. There are also a few OTC comfort things that are good to have around. In fact, there's a list of them pinned to the top of the Chemotherapy board here, if you haven't found it yet. Biotene mouthwash and Colace are two that come to mind. Stick them in a pretty little basket so that you'll be prepared and in control if you need them!
You're gonna be fine! (((Hugs))) Deanna
0 -
Anne...glad you've hopped on the support train! We're here for you & before long, you'll be supporting others & feel like you can do this!!! I'm glad your dr started you on antibiotics for your inflamed port & hope your appt went well today.
Deanna..my pharmacist is the one that brought up not taking AI w/calcium. I wish I was better at taking pills any time other than bedtime...I'd take my letrozole then...and sleep better, I'm sure. I liked your take on AI #s..much like my DH said it's a healthy 14#s so not to worry.
Dune...Deanna had very good advice & like Patty said...that chemo is saving your life, so try to look at it that way. With my very first chemo infusion, I didn't have a port & I was so scared that my nurse literally laid in the bed with me & rubbed my arm....like a mother & child (well...maybe not your or my moms...HaHa!). Anyhoo...her words when I finished, "Please tell your onc you want a port." I know you've had some trouble healing from the port, but I think it will heal & be such a godsend for your infusions.
Leah...sorry about low WBC....thinking of you...and all!
0 -
Thanks for all the hands to hold and the hints about salads and seeing results and even the middle of the week take it easy - though I have a concert scheduled one Wednesday and the Cirque du Soleil show another. I'll have to pay attention to the symptoms I have and be prepared, especially with Imodium. Hahaha. Oy. I'll be holding your hands for sure, at least for this first time. I'll let you have your hand back Kiwi Terre so that you don't fall further behind. I look forward to pics of your new place and am glad you like it. Hopefully I won't need extra xanax today. I was shaking so badly and couldn't breathe right. I'm just amazed that any doctor would even think about cutting it back at this time. NOT gonna worry about it. Hopefully I've had my meltdown. I still am a little surprised that mom let me go through that alone. I mean I was sobbing. It was probably for the best though. You all have a great day. I'm going to try really really hard to do some exercise.
0 -
Dune, count me in as another that will be holding your hand tomorrow. I'll be sending positive thoughts and healing energy your way. Once you get the first one behind you I'm sure you will feel so relieved.
Tomorrow is bone scan day for me so of course I'm a little anxious. Could use all your prayers. What a roller coaster ride this is for all of us. Going to spend the day outdoors with dh, going to the island for a little hike.
Hugs to all, Annie
0 -
hey Annie - prayers for your scan.
Good morning all. Today my niece is stopping by. Haven't seen her in a couple years. She is 21 and going on vacation with 3 girlfriends. I feel honored she would want to come spend time with get old , do nothing , aunt. They are only staying a couple hours but I bet their excitement is going to be contagious. At least I hope.
Have a great Sunday all
0 -
Dune, when I had chemo, 17 years ago, I was so scared that when I walked into the room, I broke down and cried hysterically. Like someone said, the anticipation sometimes is the worst part. See if you can line up friends or relatives to go with you each time and make sure you drink, drink, drink water to get that crap thru your system. Senokot will also become your best friend. I too will hold you tight in my prayers and thoughts.
Annie, my best for good scan results.
Had my first set of TMs on Ibrance Friday. One went up and one went down. Talk about a roller coaster ride!
Best to all today. Saw an Interventionalist MD this week who put me on a strict regimen of food, supplements and exercise. If anyone is interested, will be happy to share.
Myra.
0 -
Terre, sorry I missed you, get that flu gone! Myra.
0 -
Dune, I'm joining everyone else in wishing you well. It's scary at first, no doubt about it, but we're all holding your hand. After the first time the fear dissipates.
As far as salads - I was told to wash vegetables (especially leafy greens) well with soap. I stay away from salads when I eat out but eat them at home.
Hydranne, could you send me sources for the problem with ibuprofen and low platelets? So far I've been using ibuprofen for bone pain without a problem but I want to look into this.
Despite the Claritin I was achy again last night. Today seems OK, though. The last time ( a few weeks ago) that I used Neupogen I didn't have this so I think the combo with the Zometa is the problem. At least the Zometa is only every 8 weeks.
Leah
0 -
dune,
I have never had IV chemo (only Aredia) but fears are understandable. I'll be thinking of you
0 -
Dune, My advice to you about chemo is to take the meds that they tell you to take, when they tell you to take them. You have to be ahead of the side effects, it's easier than trying to resolve them after they've started. I didn't listen to them after my first infusion because I felt so good, then day 2 hit.... TMI but anyway, if you do nothing else please do this.
You will feel normal on the day of, except for your nerves. I took an ativan before each session it just helped me get thru it. I can't remember too much else, other than I had a lot of energy in the mornings, I built a retaining wall & completely painted the house, but I had to have a nap every afternoon. About 2:30 I would feel so tired that I couldn't keep my eyes open so I would go in & have a nap for about an hour. Good luck, we'll be here for you.
KCM, hope you're feeling better & getting settled in... did kitty come home yet?
Annie, good luck tomorrow, I was supposed to have my scan tomorrow too, but there is an isotope shortage so I've been bumped to Friday.
Myra, I'd love to hear what was recommended for you.
Hope everyone is having a good day, the weather is beautiful here, DH is taking me for a drive this afternoon in the sunshine. Cheers All! Dee
0 -
Annie I'll hold tight to your hand through the scan. I hope you get your results very soon.
This is quite a ride. It seems like I'm just now beginning to feel it and I've already had enough. Last night was so bad. I took off the bandage from where the port was placed and was really looking forward to cleaning it and putting cold water on the other one, which decided it wanted to act up. Both of them burned so much all day. So now I go to pieces. Every time I stood up to get back to washing I would see the swollen lymph nodes and fall apart again. So I'm really depressed today and feel totally done. I ate 3 pieces of cake with the mindset of what does it matter. Thanks for listening to me.
Well now let me see what plans you all have for the week.
0 -
Hey dune, thanks so much. We can hold each other's hand tomorrow, I'll be thinking of you that is for sure! I totally understand how you're feeling and I'm sending you healing hugs. I find it hard looking at my breasts sometimes cuz I think of all I went through to have them reconstructed and how they told me it was very unlikely I'd have a recurrence only to have it end up in my bones. Sometimes I want to scream. Don't worry about the 3 pieces of cake right now, do what you need to to get through today. Hugs, Annie
0 -
Sending good thoughts to Dune & Annie...and everyone else. My flu is nothing compared with your challenges, but frankly, I feel like hell. Am going to try to see the doc today; I have to fly to Auckland on Wednesday and have a full on schedule and really can't afford to feel this crappy.
Sorry to be whiny...think about how awful I'll be if I ever have a big challenge (like chemo).
Sending (virtual, germ-free) hugs to all,
Terre
0 -
terre. The flu sucks no matter how you look at it. Better get to the dr and get well soon.
0 -
What Patty said Terre. The flu is plenty miserable, worse than how I'm feeling by a long shot. Mine is just all drawn out and I'm tired of it. Please get some medicine and get feeling better. I know you have a lot of work to do, but you really must make time to rest to get rid of this thing.
Myra, I'm interested for sure. I keep thinking about going to a dietician, and if I'm really not supposed to eat vegetables I may have to anyway. And thanks for sharing your story. I am afraid I will cry in there, but it's not so bad knowing I won't be the only one.
0 -
This is the thing that brought me to tears. Cancer filled lymph nodes.
0 -
Hey all, here are the highlights of my MD visit:
1. Dr Andrew Weill anti-inflammation diet (can be gotten on Internet)
2. Astralagus, 2 capsules between meals Ashwagandha 1 capsule/2x per day before meals, vit c 1000 mgs 2/day
3. Cardio exercise 20-30minutes/5times per week. A Duke University study just confirmed this for breast cancer pts, especially those with mets, helped tremendously with tx
4. Meditation and guided imagery every day. Helps the mind and body connection.
5. Green tea, no more than 2x/day. This mad me kind of fuzzy, don't know why.
Those are the highlights, hope this helps. Let me know if you have any questions. Myra.
0 -
annieoakley (and any others who were told risk of recurrence/mets was small),
This is a tough one. When we are told that recurrence/mets are unlikely we have confidence in that statement and feel that what we've gone through is worth it. A mere 6 weeks after my bmx with one step recon, my bone met was accidentally found. Biopsy confirmed it was bc mets and still grade 1. Go figure! All this was discovered while I was recovering from a collapsed lung after port insertion. The chances of that happening? 1%, again, go figure. My point is that regardless of how unlikely these things are, they do happen to someone. Unfortunately, they happened to us (this is where the "why me?" part comes in). I don't like it any better than the next gal but until there is a true cure this is our reality. Now, if I had to get something that was a long shot, why couldn't it have been a big lottery win?
0 -
Agree @ lotto, Keren!
Dune - made me cry to see what you're going through. Sending huge germ-free virtual hugs.
0
