Bone Mets Thread
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chefmiche, I understand. I WANT to work, but can't because my cancer is so extensive. I feel like I have a hundred great ideas for start up businesses. But I can't do the simplest household task without it wearing me out. It's just not fair that the cancer we have disfigures our outward signs of womanliness, the treatment damages our fragile girly parts and wrecks our normal sex function. For me, I just keep trying. If one thing doesn't work to make me feel better, I try something else. I'm not giving up, or letting cancer win. I think it's important to be gentle to yourself and not hate on yourself for things you can't do. For me, that attitude of self-compassion gave me more strength than self-pity. With self-pity, you never feel strong. I have an internal dialogue with myself that goes something like "of course this isn't the life you wanted, but it's a life worth living." Even as bad as it is, lots of people working 70-hour weeks or who can't walk would do anything for my life. It's hard, this Stage IV living. Really hard. And it's ok to acknowledge that. But we can't give up. Not yet.
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thank you Ronda
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:-)
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Very well said, Ronda.
XO
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Chefmiche, I just know being listened to and having the exact nature of your pain and suffering heard and accepted, that will probably be the most liberating thing. There is nothing about advanced cancer to like, want, or thrive on. It totally and utterly takes your all, sooner or later. When partners and family and friends get that, its a lot easier to get absorbed in small pleasures or distracted by others or the like. Tell it like it is, read lots, and keep us posted. I want to know how its going for you. Hugs.
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thanks so much MamaMe!
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Well said, MamaMe and Ronda. Chefmiche - sending you virtual hugs. I had mentioned in a post a while back that I knew I had no reason to complain as I had it so much better than so many others. And someone said to me (as I'm saying to you), just because others have different burdens to bear doesn't make yours any less valid or hard to deal with. So don't beat yourself up for not being happy about having it.
Take care,
Terre0 -
You have stated exactly how I feel, the thoughts never go away and it's so tiring. I would love a day off from cancer, I should be content when not in pain and enjoy what I have before it gets worse again. The dreaded scans the worse prognosis, the pain and uncertain future; doctor says I can't even have a drink to relieve the stress because of the liver mets. I wish there was something to relieve the fear and worry.
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ditto ladies!! I just figured sex out in my 30's now at 37 my anatomy doesn't work right. Go figure!! I would say that all those women who are stage IV are strong azz women because we face the evitable every single day and still stand and move on
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Tarheel, wow. Your post really speaks to me. I often give advice to others about being very very very good to one's self, but your words say it so much better, especially how you say 'self compassion gives...more strength than self pity'. Those are really words to savor and also live by. We do need to acknowledge our feelings, embrace them, and still care for ourselves lovingly.
All the replies to you, chefmiche are so thoughtful and kind; you are not the only one who is touched by them. Hugs to all of you.
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Not sure why, but my bone pain is gone! I start radiation tomorrow so I expect a little pain from it. I have a fracture vetibrate, and one vertebrate all cancer...so several areas of bone cancer, hip, ribs, and femur. I do tire easily. Can't do as much as I did before. Hope this is not forever.
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Wise and beautiful words, Ronda, and much the way I feel 95% of the time -- although I am blessed not to be in pain at the moment, as I know others are, which always makes it harder to be optimistic. I also think an occasional pity party can be emotionally cleansing, as long as it doesn't last.
(((chefmiche))) it sounds like you (and Ronda, too) really want to work. I started an on-line business for that very reason not too long ago -- something I can adapt to my energy level (although I haven't had to do chemo since my re-dx, which I realize can be much rougher than anti-hormonals) -- and blogging is another activity I've noticed several Stage IV women doing. Perhaps there's something you could figure out doing P/T from home to give yourself something new to think about. That's one reason I started a new business. I needed to prove to myself that I could still problem solve and create something -- that bc hadn't totally taken that from me.
Hindsfeet, I'm so glad your pain is better! I think once all your meds kick in, you should have improved energy, although it sounds like you need to be very careful with what's going on in your back. Hope the RT goes well! Deanna
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It lifts my spirits to be embraced by this nurturing online sisterhood, whether I'm expressing lamentations, joy or something in between. Thank you, lovely ladies. 💜💗💜💗
Deanna, I am considering part-time work. Thank you for the suggestion. I have some online work but nothing on a regular basis. I would like to find something once a week for 3-4 hours, maybe tutoring, that puts me around people. I'm sure that doesn't sound like much to those of you working full time but it will definitely be a lot for me. If anyone has found something enjoyable like that, please share.
Ladies who are on Social Security disability -- you are allowed to work a bit and still receive benefits. I think it's around $800/month. Always smart to check, but it is allowed.
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Hi Sky and All,
I haven't visited the boards, since last year. Alas, no one seemed to like this Stage IV Whildchild ;>) But I am alive, anyway. Tee-hee.
This was my secret and very dangerous way to managing the pain from the bone mets. I took off like an energizer bunny last September, and kept going and going, and going until I landed in the hospital in July, and the cancer now invading the pleura of my lung
I even stopped going to see most doctors, save for my every other week pilgrimage to my oncologist.I swear, doctors who did not see me since last year, could not believe how great I looked, even now, I am so sick again. They all called my oncologist to ask him what he did. Aw shucks, he said....he really, did not want to confess. Months before, he said, he really did not think I was going to make it, until we did this...
And, I warn you this course does have very serious side-effects, and so, not all doctors may agree to it. So, Do not get mad at them.
It started with a terrible auto-immune rash last year. I could not stop itching. It was all over me, even went down my throat, and I ran to a dermatologist, who had to put me on 40 mgs. of Prednisone, dropping it down within a two week period.
At the time, I had lost a considerable amount of weight and almost all my appetite, since like, March/April. I dropped to 97 pounds, and I looked like a skeleton. Several of my doctors were screaming at me, threatening me, including trying to take away my driver's license. In Retrospect, I think, since they considerably calmed down later, they were scared that I was going to die on them, they just could not say that out loud to me. I was put in the hospital in June, and scoped and all they could find, in addition to the cancer, was that I had gastritis. I was in a sub-acute facility for two months. Even when I did get food down, I did not gain much weight.
The following medications were tried to enhance my appetite: zofran, megace, marinol, ativan (works for nausea too), bentyl, etc.
Among, the following pain medications were given to me: methadone, tramadol (scraped out my stomach, ouch!), vicodin, percoset, dilauded, and various types of benzos. I can't take ibuprofen by mouth.
But, within a week of taking that Prednisone, it was like an absolute miracle. I could feel my skin again,, the neuropathy and muscle spasms lessened, I started to get hungry and my weight rose to about 115 pounds, my sinuses cleared up, my migraines got better, the pain in my hip, pelvis, neck and spine from my mets started to go away...and, I could speak clearly again....and, then, I had the energy to walk, and then, go up and down steps, and drive, and bend down, and clean, and pick up my doggy, and the freedom to be me for a while....
So, I begged my oncologist to keep me on the Prednisone. He was not too sure about it. He knew more about Decadron, but they calculated the dose. I was lowered to about 30 mgs.... And, off I went vacuuming at 2 am, and I could go to the lingerie store and actually, wear out the saleslady.... And, a lot of people really wanted to get what I was taking because it seemed to them better than coffee,
Unless they had to live with me....because I would be up most of the night....
This approach worked for months, until I started getting some weird symptoms, and my sugar was not carefully monitored. Oops, I developed insulin dependent diabetes from the prednisone.
So, we had to lower the dose from 20-15 mgs., and it was tough to break the 10 mgs. mark. I am on 7.5 mgs. now. And, I was still, at times, outrunning people, but we added the pain meds back (because some neuropathy came back) and I do periodically need something to get me to rest (like a benzo), and I have developed osteoporosis. And, we are using it to keep my appetite going, because I have lost weight....because I have a large pleural effusion in my left lung, and it kind of partially collapsed my lung.
I am about to have a VATS next week, and pleur-x catheter placed, because the prednisone is just not ridding me of my sandpaper voice....
I have no idea what the future will hold, but for those who are desperate enough to try it, and are in the hands of someone who will monitor them carefully, and want some extended quality time and can deal with the side effects, this is one idea that is not largely talked about enough to my knowledge in the cancer community.... It also really helped a lot with my upset tummy from last year, and all that nausea...that I can hardly remember....
Now, I am off to hunt for the Affinitor board....can anyone nudge me over...I am failing on Fasoldex, but can't get up the courage to take the pills that came in the brown cardboard box two weeks ago... l* And, yes, I am still wide awake at 1 am...
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Whildchild, good post. I learned today I have 5 skull mets, and 1 brain mets to the area of the brain that controls balance. Now I have mets from head to femur. They are using a cyber knife to the one brain mets and I will be on steroids for a few weeks. Is that similar to what you were on? I was told it would give me a lot of energy.
I am having a difficult time keeping weight on...right now I have the runs 3 or 4 times a day. Not sure why. My blood work numbers were down this week...low iron, anemic, and low blood count.
I think what is controlling my pain is a coconut & hemp oil cream a friend made me. I put it on and pain is gone. Not sure if I will be in pain the next three weeks ... radiation for 3 weeks. My oncologist said she was taking me off Herceptin for the 3 weeks of radiation. Today, she changed her mind. I will continue it every week along with hormonal shots and bone shot.
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"Of course this isn't the life you wanted, but it's a life worth
living." TarheelMichelle, I absolutely LOVE that. Thank you.Leah
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Like.
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Whildchild, good post.
Aw shucks, glad I could share and help a little. ...
I learned today I have 5 skull mets, and 1 brain mets to the area of the brain that controls balance. Now I have mets from head to femur. They are using a cyber knife to the one brain mets and I will be on steroids for a few weeks. Is that similar to what you were on? I was told it would give me a lot of energy.
OMG, I am so sorry, Hinds...How long have you been at this? Terrible...but, we are still chugging along...or, limping... ;/
I do not know anything about the cyberknife...they have not used that on me, yet. But, I can guess at what steroids they will be giving you: Decadron. Decadron is the same thing as Prednisone. They will probably give you a high dose. Why are they giving it to you with the cyberknife? I am not sure they will taper you down, as they do with Prednisone. Decadron can be tough on your tummy. Can you try to find out the dose you will be on? Are they giving it to you oral or IV? Can you ask for some Ativan or Valium? You will need to take it, because you will go, and go and go, and you won't stop and be able to rest, unless you take something periodically to take a nap. Sometimes, you can cut the dose of the benzo, just to relax and sit down during the day. Otherwise, you may be cleaning your house vigorously, and offering to do everyone else{s. Just remember when you are on it, that you still do have limitations, and as much as you want to smush everything in a day, you have to try and pace yourself, even if you think you do not have to.
I am having a difficult time keeping weight on...right now I have the runs 3 or 4 times a day. Not sure why. What cancer meds are you on? Are you taking lots of acidophillus? Drinking nice peppermint,/ herbal peppermint tea? Take Immodium, that should stop it in its tracks, and I do confess to wearing those silhouettes "; The Prednisone, or Decadron, could actually, help your tummy calm down at the right dose. Are they willing to work with you on it? Prednisone is used in cases of Ulcerative Colitis, I guess that is why it can help with stomach problems. On the other hand, it can trigger blood clots, and G.I. bleeds.
My blood work numbers were down this week...low iron, anemic, and low blood count.
That is from the cancer meds, for sure. This means, you will be extra tired, and more prone to infection. I had that last year, too. Be careful when you go out, and wear those stupid latex-free gloves, and bring hand sanitizer, and do everything you can to stay away from anyone who may be sick... Are they going to hold your meds until it gets better? It can also be happening if you are dehydrated, and having the runs... That does not help. They should be giving you some IV fluid boost~=! Nice try, but not all docs will do it, alas.
I think what is controlling my pain is a coconut & hemp oil cream a friend made me. I put it on and pain is gone. Not sure if I will be in pain the next three weeks ... radiation for 3 weeks. My oncologist said she was taking me off Herceptin for the 3 weeks of radiation. Today, she changed her mind. I will continue it every week along with hormonal shots and bone shot.
Just do a little internet research on Herceptin. I do not know enough about it. I was given radiation and Navelbine shortly afterwards. There is a reaction called radiation toxicity, if you get a chemo drug too soon, or in combo with radiation. Not all medications react that way, but check it out. Mine ended up being real nasty--my lip opened up and dripped blood. My neck being radiated, suddenly, turned bright red and sunburned after the Navelbine was started, and the doc refused to give me the radiation cream. Nothing save for the prescription cream helped. I, then, developed a big clot in my port, and it broke off and dropped into my heart.
Now, I found that they could give less dosing, so you can have more later. Oftentimes, after an area is radiated, you can never have radiation again....
But, I am nudging into areas, I don{t know enough about, trying to be helpful. Let me know about your steroids, and how they will be giving them to you, and the dose, and I will try to help that.
Let me know about that miracle oil cream...where do you put it?????
P.S. I see that you have lung mets... I have a large pleural effusion, and am going for a VATS procedure...know anything about that?
And, how come in the pink ribbon campaign of October, no one tells the public what it really means when breast cancer spreads, because not too many people get it still!!! Thanks!
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'My body's in such bad shape I wear prescription underwear,' Phyllis Diller.
Someone posted this on the board somewhere, and I am bumping it...
Select ratingGive it 1/10Give it 2/10Give it 3/10Give it 4/10Give it 5/10Give it 6/10Give it 7/10Give it 8/10Give it 9/10Give it 10/100 -
Thank you whildchild for your detail and thoughtful insights and help. Correction, it is not cyber knife, it is Gamma Knife to the one brain mets. My oncologist hopes the Herceptin/Perjeta, anti-hormonal shots, and bone shot will stabilize the skull and bone tumors. I have so many tumors, like in the lungs and liver and also hilar, plueral infusions that we haven't even talked about. Right now, we are only dealing with the most urgent, which is spinal mets, hip and femur (also brain). I don't need a broken hip, or back.I am taking one tablet by mouth (Dexamethasone...4MG. I've also been prescribed Frmotidine...28 Mg ... take once a night. I took my first one tonight. I'm suppose to take the Dex with meals. Hope it works.
For me right now it is one step at a time. I have tons of doctor appoints, scans, and now radiation for three weeks. Any suggestions in regard to bone therapy ... more intense radiation to the spine and sternum.. The c7 vertebrate is fracture, and another vertebrate is completely cancer. So far it is not causing bone compression. The cream my friend made has made it possible for me to be off pain medicine. She made it so I'm not sure where you can get it. Maybe she can make it for you, and I'll send you one. She doesn't make much off of it...for me free. The cream is 50% coconut oil, and 50% hemp oil. That is all I know.
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Love Tarheels Michelle's quote and also Phyllis!
Hinds - I had radiation to my spine, but it was lower in my back. No radiation burns (like I had when they radiated frankenboob) but I was really sick after the first one - threw up like mad for about an hour. The second one, I was just queasy, the third - fifth were no drama, just tired. When I had radiation for the primary cancer, the tiredness stopped pretty much when the radiation stopped. With the Stage IV radiation, I was tired for about two months, which I hear is normal.
Saw my MO yesterday. I do adore him and am so glad he's my doctor. He so totally gets it! I have been in a world of joint pain, which I've whined about on these boards. I saw my GP a couple of weeks ago and he told me to take this synthetic opiate, which didn't really seem to do much for the pain, but it did put me to sleep, so I was getting 4 and 5 hours of sleep at a whack. The GP said the next step is morphine unless I want to try codeine (which makes me sick), which I don't want to do. I feel fine, just sore joints and bones. Anyway, the MO said that the synthetic opiate "should be banned" as it's worthless, and he totally disagreed with morphine. He said it's way too early for that. I had asked my GP about Celebrex or similar and he said no. However, the MO said yes, and after Day 2 of it, I feel almost human again! I didn't wake up with my hand in agony last night! That's huge!
The MO also said that he knows how hard it is to be in constant pain, especially as "it's a constant in your face reminder of what you're dealing with and that you have cancer." He's reasonably sure that my pain is from the Femara as I have pain in all the common side effects spots. However, he's ordered a bone scan to verify. Typically takes 3 or 4 weeks to get the scan done, so we'll see what we see.
Hugs to all,
Terre
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If you call your pharmacy, you can ask them to calculate how much 4 mgs. Decadron is to Prednisone. It seems so long ago, I can't remember. I will try to research it, and see if I can follow up on it. The other year, I was given Decadron, and it just burned my tummy, and didn't help me. It seemed that the Prednisone was more helpful, and easier to take. But, as I said, oncologists are more familiar with Decadron, and it is basically, the same. Yes, you should take it with food. At a 4 mgs. dose, I dont think it will hype you up too much, though. I was given one tummy drug that does help. It is better to take the liquid form, two teaspoons, four times per day -- Carafat. It coats the Tummy.
I went to see the other oncologist today, who sent me for my second chest x-ray in two weeks. This is a novel idea. I sound like a frog this week. Apparently, I have more fluid in the effusion, and my lung is worse....so, the VATS will be just in time.
I did start the Affinitor -- third day. I buried it in marshmallows, like I read on some boards. The pain seems better, actually, I am just wiped out.
Just to throw this out on the bone mets board:
My oncologist tells me that bone mets gals always find their cancer spreads to the lungs, anyone finding that true?
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Hi Whild, I don,t know which came first, but yep, I have both. I am appreciating your view point and information. Thanks for sharing .
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Hi Mame,
Thanks for acknowledging me.
Have you had pleural effusions too? How did you deal with them? Thanks10 -
Hi Hinds...I had a moment to look it up. I think 4 mgs. of decadron is about the equivalent of 20-25 mgs. of prednisone. That would mean, when you go to stop it, you would need to taper the dose. And, at that dose, you may, indeed, have a lot of vacuuming in your future at night
I had the energy at the 7.5 mgs., but this past week, I came down with weird symptoms, like a spiking fever, and crazy blood sugars, and then got sick. My white blood cell counts were normal, weird part. I was given leviquin. I just could not get up this week, and I became even more hoarse. Temperatures went away. So, I started the affinitor. It is a bummer, because even with the pleural effusion, I was still quite the bunny, until I was put on leviquin. The days are ticking away until my VATS, and I am very frustrating sleeping the limited time I have left away.... But, I just tried to get up and rearrange my closet and became short of breath, and sweating....so, the bed is for me, now...
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Hi.
I don't yet know if I have bone mets, but I strongly suspect it is in my left scapula. I get the PET scan Tuesday, so we'll see how brightly I glow then. My right arm is bloated with LE and my left scapula hurts like the devil. Ugh! I can see this is going to be quite an adventure.
Hi Kiwi!
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Oh, and I think I have "numb chin syndrome."
"NCS is an underappreciated though well-documented manifestation of neurological metastases ". Citation
OK. I know I need to stop searching the internet and just wait until Tuesday. Yeah right. Just wait. Simple. Sure.
I do think I need to tell the oncologist though. She had asked about numbness but I didn't think about this. It is just a small area on my right chin starting just under the lip. It looks like it is another thing to worry about though.
I really need a happy thought.
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Whildchild...not sure of all the terms and medicines thrown out there. I'm still new to medical terms for stage iv. What is VATS?I am supposedly only suppose to take 3 steroids a day. I'm just taking two cause I don't eat more than twice a day. I take medicine for my stomach right before going to bed. I did wake up with burning in my stomach last night.
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Oh dear Dunes,
I hope you won't be mad at me for telling you this, but I learned it the very tough way.
PET/CT scans are not good for picking up all types of bone mets. You still need a bone scans. It would seem that oncs in the last few years have gotten lazy, or think, the PET scan is definitive. It is not. It is okay with some types of bone mets, and misses others. It is just the nature of tracer, and the radiologist at the helm. For example, in 2011, I complained of leg/hip pain to three of my oncs. They sent me for a PET scan only that year. My migraines were getting worse. When the results came back, all three told me that I was "cured" of breast cancer and don't bother them again. I thought it was really strange. Several weeks later, I ended up in the hospital. A bone scan was run, and a disc at the top of my neck lit up.... I didn't know what to do for like, six months. Finally...I went back to one of them...who yelled at me and called me a hypochondriac, but did give me a script for a bone scan. This time, I not only had it in my neck, but it had spread to my hip, and so on.
The radiologist told me that Pet scans are not great with the type of bone tumors that I have. I have to have both, since I have negative tumor markers. My onc tries to forget, but I don't.
And, to be very picky, the latest and greatest in bone scans really is the sodium flouride bone scan. it gives far superior results. It just depends if you can find an imaging place that does it. Do not have the contrast go through your port, it will really mess it up.
The PET scan will be a good start, but please try to also get a script for a bone scan, okay?
Good luck....
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