Bone Mets Thread
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I forgot who asked what but I'll make my best guess. Lorrie, I had some tumors show up at the bottom left of the breast that we removed and reconstructed. They don't seem to have any intention of removing them. They did get a little better with the anastrazole. Deanna the change of taking the anastrazole in the morning instead of at night improved my sleep immediately. I sure am encouraged by reading stories of people living well for long periods of time with this. The way I felt tonight I thought surely I had taken a major turn for the worse. Hell. I shed a few tears it hurt so bad. I drank less than half my beer, and I caught myself whining to myself that I'm dying, meaning it the way we mean it when we are sick or in a lot of pain, not literally. Then I realized I was stating a fact, unless some great treatments come along. Dealing with this is a winding road.
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I am cutting back to 2 days of work per week. I need more time to exercise and take better care of myself. It became clear to me today. You all make so much sense. The anastrazole is putting weight on me quickly. My job is sedentary. I need to make my job taking good care of myself.
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dunesleeper - yes it was me who asked question about removing tumors after bone mets DX. Tomorrow I see my MO and am going to ask the question why can't I get any humors removed. For me I can't see why not. Will update you later.
Also, after seeing Deanna going for a second opinion frequently that I am going to seek out a second MO as well. It is not I don't trust mine but I am an advocate of brainstorming in groups. That is were great ideas and opinions come from. Also it gives you great peace of mind which is invaluable to me. I do not want to worry if I am doing the best thing for me.
I feel like treating bone mets is really like a winding road too. You turn left here and then , oh, now we turn to the right. But there is a reason we do this. For ourselves and for our family. At least that is why I am going through all this.
I have tears and fear sometimes too. You have to let it out. I get mine out than I am back on track to being positive and focus on the task at hand. Talk to or email your friends. Just to vent. That does wonders!
We are in this together. We are not alone. I see there are wonderful people here who offer good advise that, at least for me, I am very grateful for their responses.
We are a great group! I am so grateful to be part of this.
Lots of hugs to everyone!
Lorri
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Dunesleeper - Have you spoken to a radiologist about your bone mets? They did radiation to my spine because several vertebrae were collapsing, but they had to do it before I started chemo. It made a big difference, but it got worse before getting better. She said it takes months for scar tissue to form where the bone used to be and add strength. SEs were minimal for me, and depend on the location they are radiating.
I hope you get relief soon!
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Thanks Shutterbug. I see the doc early December. For now I'm ok. Last night I took 3 hydrocodone and 3 xanax. That knocked me out quick. Clearly I need those pain pills for now. Mom and I put a deposit on a trip in the spring. Viking river cruise the Danube. I have to find out if the doc thinks I'll be able to do it. That was a lot of pain last night. Level 10 for sure. I wouldn't enjoy the trip, as amazing as it must be, if I felt like that.
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Hi everyone! I am back from my big adventure in the Big City, getting my port put in. I honestly don't know how people live in Vancouver, the traffic is absolutely horrendous. They screwed up my appt time, calling me & telling me the time was changed when it wasn't & then not checking me in properly so I sat in the waiting room for 3 hours. The nurse was horrified because the appt before me didn't show up (I guess they called me instead of her for her appt time) but she said if they had known I was there they could have taken me in. So we spent all day at VGH & $37 on parking!!
But the port insertion went fine, he put it about where I wanted it, but I'm a bit nervous about them using it on Friday for the pamidronate, it's still quite tender. I will be so happy to have a shower today!!
I just got notice for a bone scan on Dec 15, CT scan on Dec 17 & my onco appt in Victoria on Dec 24th. Looks like I will be doing so much traveling in December.
DH & I are thinking of just staying in Victoria for Christmas & not trying to get back home in the Christmas rush.Take care everyone!! Cheers, Dee
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Dee glad that you survived the "big" city. When I drive in my big city I just make believe it's bumper cars (no my car is not all dented, have jersey plates so they get outta my way:) Had a long wait at my last appointment, after an hour I reminded the recptionist that I was still waiting got in shortly afterwards. One of the practice managers did apologise for the wait. Your port should be fine for the treatment I used mine only one day after it was put in and all went fine.
Charlotte
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Thanks Charlotte, I was a bit worried as it's still quite tender. I reminded the intake receptionist 3 times that I was there but I don't think she bothered checking anything. She just told me that they had taken my file. Anyway, I survived but I'm still mad that she didn't do her job.
Anyway, I will post how the infusion goes tomorrow. I'm happy that they can do all the contrasts for scans through it too.
First big wind storm of the season here, power is out until midnight, luckily we have a generator. Dee
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Hi Dee. Good to hear your port surgery went fine. Yes, driving in Vancouver is crazy! I will be waiting to read how your pamidronate infusion goes. I stopped after 2 infusions. About 12 hours after my pamidronate infusions, my joints would be so stiff that I was like the Tin Man. It was terrible. Saw the wind on the news. Yikes! Karen
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Had a busy day...day's like today...I didn't think once of my disease...just that I had to get my 5th wheeler winterized before the next big storm of either rain or snow...cuz last weekend...I had leaks... so my son-in law's friend came and got up on the roof and sealed everything and put plastic on the sky lites so I can stay warm this winter...first time spending a winter in a 5th wheeler...OMG...How did I get to this spot...from owning a home... and Harley Davidson...a passion in my life.... to this because I can't financially maintain the lifestyle i once lived...because I can't work and I'm on a fixed income.......And I'm seating here ***** in TEARS...cuz I think I over did it...and I don't feel good now...Damn it...I used to be able to do everything by myself ...I am a very independent woman...What the HELL!!! Woke up last nite and my chest was so tight ...dead sleep ...had to walk outside felt like I needed air...have NO idea what that was...scared the shit out of me...but went a way...thought it was heartburn ...
tonite...I'm having those desperate thoughts...of not feeling good...overwhelmed with emotions...Took my Lorazipan always help when i get panicky...just sometimes scared to go to sleep...thinking I might not wake up...I'm so sad tonite... ***** TEARS!!! Venting!!!!! Carla0 -
Karen, This will be my 6th pamidronate infusion. The first couple were really bad with horrific bone pain, so badly that I had to take tylenol 3, but now I just feel a bit flu-ish the following day & that's it.
The storm is over & BCHydro got the power back on 6 1/2 hours earlier than they said, so "yay" hydro guys!! I never like the big wind storms, we live in the forest & all the trees waving back & forth, you just know that one is going to go down & take out the power.
Carla, I'm so sorry you're going through this. I hope that things will turn around for you. Sounds like you might have had a panic attack. Can you go to see someone & find out if it's stress?
Anyway, I need to go to bed, I took one of my little blue pills for sleep & I must go before I have to stumble down the stairs. Cheers, Dee
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(((Hugs)))), Carla. You probably should see a doctor in case the pain is related to the colostomy. Having said that, I also had severe heartburn during chemo. I had to eat a light dinner and not go to bed until 3 hours later. Also propping yourself up in bed helps.
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Carla, I think we've all been where you are and understand your pain and fear. Sending big hugs and positive energy your way. Praying today is a much better day for you.
Dee, hoping all goes well for you today with your infusion and your port. I am positive it will go very well. Please let us know.
Dunesleeper, hoping your pain has eased off from the other day. It's strange how one day it's bearable and then others just down right excruciating! I had a rough day with my lower back and hip yesterday making it hard to function. Hate days like that.
Off to see the radiation oncologist for my consultation today. They're planning to start rads to my left humerus. I guess that's better than surgery right now. I'm very thankful for that.
Hugs to all,
Annie
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Carla, I hope the sunshine is out today where you live, and that the low mood, which we all totally get -- especially in the wee hours of the night if we're alone -- has passed. I don't think any of us here hasn't had at least one good pity party over the losses that bc and then metastatic bc, if that came later, brings. But you're a strong woman, as you said, and thankfully, those low times rarely last. At the risk of sounding like a Pollyanna, try to focus on what you have, like family to help, and friends who care, and a 5th wheel home for now. And try to accept the fact that right now you can't do as much as you're use to doing, but that doesn't mean you'll always feel like this or won't be much better soon.
As far as the chest pain, it sounds like a panic attack. Definitely report it to your onc or your PCP -- just to be sure you're on the right meds & dose. Your onc may also want to check your heart, just to be sure all is well.
One more thought... Is there a psychologist or oncology social worker at the facility where you're being treated? Many facilities have them, and they can be a great resource for both emotional support and also to be sure you're getting any benefits to which your current income and Stage IV dx entitle you. There may be more financial help available to you than you realize. Big hugs to you, Deanna
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Hi everyone -
Just popping into say hi - I think it's been over a week since I posted and I found myself catching up on this thread almost the last hour. So many topics. Welcome to all the newbies... as others have said, I'm sorry you have had to join us but you won't find a more intelligent, compassionate, positive (especially Deanna, Caryn, Chrissy
group of women anywhere. This is my favorite BC "family". I'm so behind that I don't know if what I have to add will be read but: I've had my port in my right arm for the last two years....halfway down.... in the jiggly part that's gotten even more jiggly since it was placed there. It doesn't bother me at all and I prefer that to my collarbone/chest area..... just an FYI for anyone else considering getting one.
Deanna - great news on your blood work. (this seems like a million years ago) and thank you for the advice and encouragement on the diet. When I read what everyone else is doing I feel guilty and panicked that although I have read those books, I haven't made the changes that I need to. I am such a sugar addict...that's the hard part for me. I have no problem giving up everything else.... but I love love love to cook and especially to bake, and I have three boys and girl (and a husband) that love to eat what I bake and I can't resist licking the bowl and the beaters and eating what comes out of the oven! Ugh. We are going to Hawaii in 2 weeks and I need to get into a bathing suit, so I think I will take this time to completely make all of the change that you all have, and sort of kick start myself.
Dunesleeper - I agree with shutterbug on the radiation. I had compressions up and down my spine and horrible pain and spasms, and after three weeks of radiation I was much better, although I was also in a back brace for 2 months (THAT was fun) and have been on a very low dose of methadone for the last two years. (I swear by it! No pain. No side effects. Doesn't feel like a narcotic.) Anyway - I highly advise the radiation.
Stress - I also had stressful events in my life before my first diagnosis (itty bitty lump in left breast) and second two years ago. I rarely stress anymore...I do have anxiety - especially now because I have a PET scan on Nov 20th - my first in 6 mo - and I am totally anxious) but I think I have managed to get rid of real stress, even though I do work part time and I have a houseful of teenagers. In terms of living each day to the fullest....this may sound sappy, but I watched the BEST movie a few weeks ago...quite randomly one night. It is called About Time...I'd never even heard of it. It is a cute little chick flick with the BEST MESSAGE about how important each day is. I just cried and cried in the end....I want to watch it again this weekend. Great movie for anyone, but maybe especially for those of us here on BCO. Anyway - that's two cents on that topic!
I'll try not to get so behind from now on and participate more.
Hope everyone has a good weekend.
XOXO
Andrea
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Back from my infusion. Having the power port was easier than getting it in arms, but it didn't take any less time. Didn't really hurt, but I've really done in my left shoulder helping DH move the dryer yesterday. Rotator cuff injury the Doc tells me. Bloody hell it hurts. Hope everyone's well... Dee
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got my second Xgeva shot. It was a quick in and out. Was real tired from the drive so napped earlier. Hopefully I won't have trouble getting to sleep now. I feel ya Dee. I know my pain all this week, including Wednesday's level 10 pain is a result of doing something I shouldn't have. But sheesh. I was always able to do it before. Sigh.
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Hi to all the new girls and welcome........really sorry you need to be here but this is a really good group.
Dunesleeper learning what we can do and what we can't do anymore sure can be painful...........been there, done that and it's not a easy lesson to learn or accept. I sure hope your pain has subsided enough for you to be a little more comfortable.
Hi Dee, sure glad your port placement went without a hitch and made your infusion easier.........anything that does that sure is a good thing. Ouch! on your rotor cuff damage, one more lessen for you, don't lift anything that heavy. Sure hope it heals quickly for you.
Just a little aside, when the nursed access your port, if it is painful you can request to use a little EMLA cream. It is a topical local anesthetic that is often used to numb the area for a blood draw in children and works really well for numbing the area of your port to make the experience a whole lot more pleasant.
Deanna, great to hear that your bloods were good......it's always a nice feeling to get good news when there is so much bad around. I admire the fact that you have made so many changes to your diet and a lot of them quite drastic. I have always had a healthy diet ie everything in moderation and 99% home cooked and fresh and as organic as possible. The major things I have really cut back on is dairy and cane sugar although I still use palm sugar, natural honey and maple syrup as sweeteners. I still eat natural Greek yogurt and a little hard cheese but for smoothies etc I use Almond milk. Red meat I eat once or twice (more once) a week but the rest of the time I eat organic chicken and eggs. So no real drastic changes in the food but there have been a lot of changes in the way I prepare it but I obviously still eat too much of it as the pounds are refusing to move.......lol.
Hope all you girls are all doing as good as possible.
Love n hugs. Chrissy
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Hi, Chrissy! So good to hear from you! It sounds like you are also a very healthy eater. How're your knees doing these days?
I don't think I shared this here yet, but if I have, I apologize for the duplication (chemo brain). I think it's a really good article.
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Hi everyone, just popping in to say I met with the radiation oncolgist yesterday and in his opinion the area on L5 is a bone met and not an arthritic change. I was sad to hear this but have to say I believe him because I'm in a great deal of pain as of late. Not just pain but my back feels very weak, like I just cant stay standing for very long but when I'm sitting it doesn't feel much better.
So they re-scanned me so they could tattoo me for the rads. One to the humerus and one to the L5. Can anyone tell me why it's just one radiation treatment to each area? I thought they would do more than that. Really having a hard day today with this weakness, feeling like all I can do is lay down. I think rads start next week, he said the one to L5 goes through the bowel and bladder and will cause some issues. He also said this is done mainly for pain management and will not eradicate the cancer.
Any input would be appreciated. Thanks and hoping you're all feeling well.
Hugs, Annie
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Hi Annie,
My experience is a bit different, but I did have rads to my upper femur, very close to the pelvic area. I had rads x15 and did develop some unpleasant diarrhea, but it didn't last beyond a week after I completed rads. I chose not to use Imodium or any other anti-diarrhea meds because I was afraid of the opposite problem, which I dread. I was on medical leave at the time , so beside going for rads, I stuck close to home. I carried aloe vera gel with me and slathered it on the radiated area immediately after tx. I also slathered on Aquaphor. My skin was a bit pinkish, but no real burns. Wishing you the best and hope you're pain free soon.
Caryn
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Caryn, thank you for your reply. So 15 rads to your femur sounds like alot but I'm wondering if it actually had a curative effect. In your opinion is there a reason why you can't radiate the L5 more than once? Just seems like such a low dose, but maybe it is because the radiation will pass through the bowel and bladder. Also are there not different types of radiation? Sorry for all the questions but you seem so knowledgeable, I value your input.
Thanks, Annie
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Annie,
My knowledge is not as great as you think:) It's really limited to personal experience. 15 rounds is not considered a lot. It seems to be "average" for spot tx. You are correct, that the intent was to kill off the little bugger. My bone met has been necrotic since rads. Pain management was not part of it since I had no pain. BTW, it's been 4 years since rads and the met remains dead and I have had no progression. I really don't know about parts of the body that can/can't be radiated more than once or different types of radiation. Great questions to ask your RO.
Caryn
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Annie,I recently had rads to pelvis area (sacral and iliac) and it was a 1 time treatment. They said it was 3D radiation - higher dose which targets a specific area with less impact on surrounding tissues and organs. Worked well for me. Rad Onc said further rads is possible if pain comes back. I was told it is a new method.
Linda
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Annie & Caryn, Thanks for posting this information. I have been curious about rads for my tumors & it hasn't been brought up yet by onco's, but I want to know as much about it before my next appt as I am going to ask why I'm not getting radiated, but maybe I don't want to? with all the SE's. Annie, I hope you get some relief,
Chrissy, I had forgotten about emla cream, but I really didn't need it, but I think I will pick some up to have in my purse just in case.
Dunesleeper, I hear ya! I've always been able to lift heavy things and it's never been a problem. The dryer was pretty lightweight too, so that's why it came as a huge surprise that I am in so much pain. I hate taking anymore meds but had to take T3.
Andi, I've not heard of a port like yours in the arm, here that would be called a "picc line" The fellow next to me yesterday has one but he explained that because they are quite troublesome they are used short term. But I think my type of "power port" is fairly new. The RN had not seen one like my before.
Sorry if I've missed anyone, hope everyone is doing well today. Cheers, Dee
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GG,
The se's of a short course of rads are not too severe and shouldn't be a concern if the end result is helpful. As I described, I had no burns or skin damage and the diarrhea was short lived and not intense.
Ports and PICC lines are two different things. A port can be placed in the upper arm, though it is less common. A port is completely under the skin and requires no care (save for flushing) once it's in. You can get it wet without worry. A PICC line leaves an open access "tube" protruding from the site. It has to be kept covered and can't get wet. You have to take care of it, whereas with a port, regardless of placement, you pretty much don't. Because it is open, the chances for infection with a PICC are greater. In the US, it's usually used for shorter term applications, like antibiotics. again, I'm sure there are exceptions, but generally, that's the difference between ports and PICC's.
Caryn
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Well, Dee, I bet you, like me, will be more careful in the future. Funny though. At the post meeting beer Wednesday I almost helped move a table. I stopped myself but instinct told me to help. I am back in bed.
My pain is much less but I have had no energy since Wednesday. What's up with that? Does it just take time to recover from a bout of pain? I don't understand.
I am learning a lot about rads for pain relief from you girls. I'm sorry you had to go through it though.
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Well, Dee, I bet you, like me, will be more careful in the future. Funny though. At the post meeting beer Wednesday I almost helped move a table. I stopped myself but instinct told me to help. I am back in bed.
My pain is much less but I have had no energy since Wednesday. What's up with that? Does it just take time to recover from a bout of pain? I don't understand.
I am learning a lot about rads for pain relief from you girls. I'm sorry you had to go through it though.
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Thanks Caryn, I always learn new things here. And it's always so interesting, the differences between things in different countries & even between provinces.. I'm glad that my port is in my chest even though it can be seen with some shirts, I would think I would bump my arm all the time (I'm not the most graceful being on the earth!
) I've seen a number of ports here & they have always been in the chest.Dune, I'm going to have to be like you & try not to do anything. Perhaps I'll try to be one of those women whom men jump up to do things for... oh no that won't work, never has. And I find that pain is indeed very exhausting, I don't think that's unusual. Try to take it easy for a few days. Dee
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My port is in my chest too, but in the little hollow where my shoulder meets my chest. Unless I'm wearing spaghetti straps, it doesn't show, but even if it does, I no longer care. I have a strapless, long summer dress which I wear, as it's cool and comfy and it shows with my swimsuit too. I did care initially but I'm over that now
I'd like to whine about the miserable cold I have. I know, small potatoes as compared to bc but it is wearing me down. My 1st graders are lovely, but they are also little germ factories. All the hand washing in the world can't shield me from their lack of hygiene. I'm trying to muster the strength to do some house cleaning and then it's on to report card.
Caryn
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