Bone Mets Thread
Comments
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Welcome Sissy2013, even though I hate having to welcome a new member.
As for eating, I've lost 25 lbs in the past 3 months. Of course, I can afford to lose more weight...no problem. Right now I have such a hard time eating due to loss of taste and feeling full after a few bites, that I just eat whatever I can taste. It's not a healthy diet but just trying to get food in is all I can do at this time. It's so difficult when even my favorite foods have no taste and I just can't force myself to eat. I've gotten to the point of just eating food that has a very strong flavor, things like spicy chili or heavily seasoned pasta. I'm happy to lose weight...but it gets a little depressing not enjoying eating at all. My mother, sister and I go out to eat once a week and I feel bad that when the food comes I just can't seem to be able to eat it. Hopefully, when I move from chemo to AIs it won't be as bad.0 -
aaoaao, That is rough. This disease takes so much from us. I am not complaining too much yet, but I know it is going to take years of my life from me and that su*!#. Are you still on a break from chemo, I hope? If so, maybe soon you will enjoy food again. You must feel weak, maybe you can drink some nutrients? or try little snacks often instead of large infrequent meals? I was down to 112lbs last week! (I thinkthe last time I weighed that when I was 12yrs old). I put on about 3lbs since then by adding healthy snacks in between meals which mainly consists of some salad or nuts. (I still have dark chocolate, 86%, but I am going to get the kind with absolutely no sugar. I don't know if my diet changes will help but I figure I should give it a shot). I really hope it gets easier for you to eat. see you soon.0 -
Unfortunately, I didn't get my chemo break yet. I was kind of down because my onc postponed my break until after I get my next set of antigen numbers and scans. So I won't actually be off chemo until after the holiday season...booo. I was so excited about being off for Xmas and New Year's but it's not going to happen. I was an emotional wreck because I really thought it was going to happen. I know it will happen after the holidays but I really wanted it to enjoy my holiday feasts and be stronger to Xmas shop. Oh well..as long as all the tests come back good, I'll be happy anyway. I have severely cut back on sugar and diet soda. I drink way more water than I ever have. I use to only drink diet soda all day and now I can go days without one. I usually only have one if I'm eating out with someone. To me most restaurant water taste terrible so I just can't drink water there. The taste of food is so bad that I can go all day without eating because there is just no desire. I remind myself that I have to eat something because some of my meds require food to be eaten when they're taken. I think it is the chemo just killing the taste buds and they will return after I stop. I will be getting a break soon...I will...I will. I'm certain if my numbers look good and the CT/Bone scan comes back clear I'll be good to go. If my taste buds don't improve, I probably will do healthy, protein enriched smoothies. I've been collecting some good recipes for smoothies..I just have to get a really good blender...my Xmas wish gift. I believe my son is getting me one so I won't buy one until after the holidays if I still need one.0 -
Aaoaao did you try gargling with baking soda? It seemed to help my taste buds. For some reason when I was on chemo I hated pop. Never went back just drink water coffee and green tea. Btw I'm no health food person. I eat whatever tastes good0 -
Maureen, I haven't tried that. I'll give it a try though since it might help and nothing else has. I use to hate drinking plain water and now I actually seem to prefer it. I use to put those water flavorings in it when I first tried to drink more water but now I just prefer plain water. It's funny how cancer changes things...I love water...who would have thought? I also like coffee flavored drinks now...I use to HATE anything with even the slightest coffee taste. People use to make fun of me because I would drink soda in the mornings because I couldn't stand coffee. Now I find that I actually crave an occasional Starbucks drink...they must put something addictive in there.0 -
aaoaao, I had the same taste problem you describe when I was on the Afinitor/Aromasin combo. I started taking a zinc supplement and it worked - my taste came back to I would say 85% normal. It takes time (a few weeks at least) but I found it very helpful.
Leah0 -
The most important question is, will the tooth fairy still pay up!
Let me explain. At the tender age of 57, I have a retained baby tooth (lower). There is no tooth to replace it and it's root is virtually gone. Essentially, it's being held in place by the adjacent teeth. Last night, I bit into a cookie and about 1/4 of the tooth broke off. BTW, this clearly proves that sugar is the demon in disguise
I'm not in any pain and it's not visible. Called the dentist this morning and will be going in next Tuesday (no, I will not take a day off from my dear students!) . The big concern will be the fact that I just stopped Aredia 6 weeks ago, after 16 infusions spaced over two years. I don't even want to think about ONJ, but my dentist knows about my situation, so I trust that he will do what's best to avoid that possibility. To add to this, I am leaving for my great NZ/AUS adventure next week, and have a million things to do as well as trying to teach first graders who are already vacation crazed! But, what I really want to know, is if the whole tooth comes out, will the tooth fairy still pay up?
Caryn0 -
I lost 25 lbs soon after diagnosis. It wasn't from chemo (didn't have any) but I guess it may have been from the combination of surgeries, rads and AI. During the months prior to diagnosis, nothing tasted good - because of my back pain. I had zero appetite. It almost felt like, I was constantly chasing or looking for the way this or that particular food should taste like pre BC, but darn, i just couldn't get that taste back! Like MUSIC, I get upset when people ask if "I am okay" because I lost a whole lot of weight. I have not told anyone about my BC dx beyond my immediate family....not yet, but will, in my own time. I just hate the drama and the pity party that comes with it. Yep, I'm the type of person that doesn't like to open presents in front of people. LOL! Funny, but the baby showers they threw for me many years back were the worst ...i would have preferred opening them up all by myself, without everyone watching me! Sorry, but is it just me? Anyhow, my MO said that I can eat anything that I want that is appetizing (be it sweet or spicy) as long as it is not excessive! If I want a big juicy burger, she said go for it. If i want chocolate cake, indulge! She even told me it was okay to dye my hair if it made me feel better. MY MO believes in QOL...without her saying it to me, we both know that I am already a IV.
Take care all!0 -
Caryn..that tooth fairy hasn't got a big enough purse for what she owes you for that tooth. The timing of this certainly does stink. It always seems to be something doesn't it. Hopefully, all can be taken care of and won't interfere with your trip.
Teen22, that's my motto lately. If I can eat it, I do. I don't really worry about what it is. The unfortunate thing is even foods I use to love and crave..chocolate, chips, pizza...nothing seems to work. I buy them and then try them and nothing. When cancer ruins chocolate I feel the need to explode. I know it's temporary but just aggravating right now.0 -
Hi Caryn, I had a tooth out and developed a reasonably mild form of ONJ (if there is such a thing). Antibiotics helped and the mouthwash they gave me helped a bit. Just keep everything very very very clean. I got a mouthwash here with litocane in it; put it on the bad spot with a q-tip. But, touch wood, seems to have stopped now. I had a severe infection when they pulled the tooth and had asked them to give me another round of antibiotics as I could tell it was still there (swollen glands, etc). And they wouldn't. And the ONJ started; I think because of the residual infection in large part. After about 4 more rounds of antibiotics, it's pretty much gone. So hopefully you won't develop it. And I wish you the best for your Australia/NZ cruise! The weather has been variable, but quite nice here overall. The layered look with a rain jacket is the key here.
aaoaao- sorry to hear no chemo break. That sucks! I was a diet coke girl until the ONJ popped up. I realised that the ONJ was worse when I drank diet coke, so I stopped. Now I'm hooked on sparkling lemonade. Haven't tried it with salt, but here's a recipe: http://www.wholefoodsmarket.com/recipe/sparkling-honey-lemonade-citrus-salt-rimmed-glasses.
MusicLover - the first few months after my dx, I didn't want to go anywhere, didn't want to do anything, etc. My husband doesn't drive, so that forced me to go out a bit. Of course, being on crutches put a bit of a cramp in my style. I did go to the local kite festival in March (surgery was in Feb) and it was nice, if a bit frustrating as I couldn't really get to the beach where the kites were. And I slowly started doing more things. I think pulling in is probably common. Chrissy's philosophy is similar to mine - asking "am I ok right now" pulls you back to the present. Sometimes the answer is no - I'm not ok right now, I'm depressed, stressed, and terrified. But...I have my home, husband, job, kitties, and I don't feel that bad. So yeah, I am ok right now. Living in the moment is key, and it's really hard for me because I'm such a project manager. I want to schedule everything!
I was told by one of my former managers that I should quit work and stay home. So I gave it some thought. We have no savings to speak of, my husband can't find work, so my choices are to get up and go to work and have as much fun as I can while I'm healthy enough to do so and can afford it; or I can go on the benefit (although I'm not sick enough for the illness benefit, so they'd make me try to find a job) and be broke and depressed, or I can take myself out. So, the best choice for me is to keep working. And since I'm going to be alive, I can either spend my time in abject terror and depression, or I can enjoy things as much as possible. So I've chosen the latter for the most part. Not that I don't have my moments. But it's gone from an all-consuming terror to occasional fear. All that said, I'm quite stubborn, which is currently serving me well.
What's odd to me is that people tell me I'm brave. I'm not brave at all. I'm just doing the only thing I know how to do, which is put one foot in front of the other and keep on going.The other thing I'm hanging onto is the news - things are happening so fast in the cancer field. My friend's 41 year old sister tragically died of melanoma about a year ago. Now they think they have a cure. So I reckon the longer we stay alive, the more chance of a cure.
Chrissy - I would love info on the natural supplements you're taking. I hate taking ibupropen every day, but it keeps me able to live a reasonably normal life. I can't walk as far as I used to and I have chronic fatigue, but otherwise, it's life as normal. I also baby my back as I'd prefer not to have my spine turn to custard. My husband does the heavy lifting and I can only garden for a little while at a time (no more 6 hour weed pulling marathons for me). Mostly I've learned to be a bit more gentle with my body.
Hugs and prayers to all,
Terre0 -
PS..thought I'd add my seasonal avatar - Nitro looking very grumpy in his antlers.0 -
RangerMom, I'm thinking of you. You're in my prayers.
Sissy2013, welcome. Sorry you have to be here, but you'll find the support and advice invaluable. I've learnt so much, it's definitely helped my since my dx.
Music lover, sorry I didn't answer sooner, I actually slept well last night and it's now just after 7 am here! As to whether being NED makes a difference, yes of course, but I think the main difference is that now I only have herceptin, xgeva and tamoxifen and luckily for me the se's are very manageable. With regards to living my life as I did before bc, unfortunately there are changes. My neck and spine in particular are still quite painful, the bones are badly damaged so I use fentanyl patches with oxycodone for breakthrough pain. I also have arm truncal and leg LE on my left side (my dominant side) so sometimes walking is difficult (no sensation and swelling in my foot and leg) and I often can't write. Thank goodness for 2 finger typing! I can drive, but my reflexes aren't great because of back and neck problems and also the meds, so I tend to stay local. Anything else I have very good friends always willing to take me where I need to go. I have 2 kids at home, DS 14 and DS 12. My DD 18 is away studying since this year, but she's home most weekends for dinner and clothes washing lol!!
Life isn't the same, but I live each day as it comes. Like Chrissy, I live in a small town where everyone knows me; so a short walk will always mean meeting and chatting to people. I do what I can with regards to housework, I cook dinner most days, and I stay busy. It's a 'new normal' but I'm enjoying life!
Take care,
Nicky0 -
love the avatar KiwiCatMom!
Nicky0 -
Thanks Nicky! He's actually a very sweet cat but wasn't fond of wearing headgear.0 -
Hi aaoaao, I am sorry you have to wait longer for your chemo break then expected but I am glad that you got some more ideas on how you can help with the eating problems.
Hi NickyJ KiwiCatMom, You both sound like you are dealing with everything you are going through pretty well. It doesn't sound easy at all!
Hi Teen2, Last year was the first time I dyed my hair because I was afraid of the chemicals, little did I know I already had cancer. I dyed it myself with henna and it came out so bad, so then I went to a hairdresser who fixed it for me and I have it dyed professionally twice after that. Are the chemicals the reason you do want to dye your hair? Once I was diagnosed and my onc put me on the AI I got it dyed, during my testing I wasn't sure if I was going on chemo and would loose my hair so I waited. I plan on continuing to dye it unless I have to loose it.
Hi Exbrnxgrl, I too had baby teeth that never fell out. But they are long gone now, replaced with two bridges. They were matching one on each side of my lower teeth, I think they were bicuspids (which I beieve some hollistic practictioners relate back to breast cancer - that whole root canal infection thing but I have no teeth there, so it just sounds crazy.)
See you later....I have to take my mom out now.0 -
Sorry Musiclover, I didn't even think of sharing my info. Just so touched by the strength and support when I was reading the board. I was diagnosed Stage IV from the get go in August (turned 50 and apparently my warranty was up :}). Went into full panic mode until I started a treatment plan and then took a deep breath and off I went. I have done radiation on the neck met and now on my fourth cycle of Abraxane to knock back the rest of the little termites. Had my first scan since my dx and had great improvement so I am thankful. My onc said next I go on hormone therapy so I guess bring on the hot flashes but I will take them with a smile and hopefully some of you courageous wise women will have some tips for dealing with the se of the next road of this journey.
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Music, a lot of our BC sissys don't like the chemicals so they choose not to dye their hair. I am going to have it colored for the holidays to brighten my spirits (so forget the chemicals)...plus, I got family visiting from all over the country.
Femara seems to cause a lot of breakage in my hair but people can't really tell save my hairdressee. Although it has thinned quite a bit, I still have a full head of hair more than most.
All - Are you having a lot of bone pain? If so, how do you manage it? I am curious how everyone manages their daily lives. I can't believe that some of you are still able to take Ibuprofen for their pain. My bones are probably too messed up and therefore the need for Oxycodone every 4-6 hours? I am hoping Zometa will help relieving the pain when I start beginning of the year. I am so tired of sitting at home doing nothing. A far cry from my previous life
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Teen22 - so sorry to hear about your pain. I'm quite lucky and I know it!
Sissy - don't know where you live, but my hot flashes started at the beginning of winter here in NZ and our heating bill was lower than normal! Not as much fun now that it's warming up. I just tell people that I'm still hot, but now it comes in flashes.
I dye my hair buy try to use the ammonia-free ones. Just can't quite cope with gray hair yet - it's not a pretty shade of gray at all. So I figure the mental boost it gives me to still be more or less blonde out weighs the risk of colouring form time to time. But it's definitely a personal decision. I have noticed since I've been on the AI, it's gotten curlier and curlier. And the curl patterns and shapes are getting stranger by the day. However, given that I've never had great hair, I just kind of ignore it and carry on. I can't see it, so I reckon it's not my problem to deal with - other people just need to adjust!0 -
Hello all! I dye my hair. I'm 48 and just not ready to have a full head of gray! I don't like the chemicals, but pretty sure I'm not worried about getting cancer from them!
I have a question. I have extensive bone mets in my spine, hips, pelvis, and shoulders. My last scan said my spine only had 2 small spots that didn't show tumors. Most of my pain is in my upper back, neck, shoulders, and right arm. I take Vicodin every 12 hours and it seems to be helping. My problem is nausea. I always eat before taking it, but I still seem to wake up nauseated for the first hour or so of the day....and then at random times of the day. Anyone else having this issue? What are you doing to combat? Onc offered drugs, but I really don't want to have to deal with the epic constipation that would surely follow......feels like I would be trading one SE for another.0 -
I happily dye my hair. If I'm going to have stage IV bc, at least I'm going to look good!
Teen22, I'm sorry about your pain. The only pain I have is morning/sedentary stiffness from the AI. Good thing I'm not a sedentary person. As for Zometa, it is a bone strengthener, so I don't know if it will provide pain relief. Have you had rads for bone pain?
Caryn0 -
Caryn, my pain is on my surgery site (had spine fusion last August and now have 2 rods, 8 screws and a T8 graft cage). I also have pain on my-ribs. I had 20 rad treatments on my thoracic surgery site. I was told it takes anywhere from 4 months to a year for the pain to totally go away
MO put me on prednizone for 15 days. I am on my 8th day and it's helping the pain some. We'll see..0 -
here's hoping for a more painless future!
Caryn0 -
On the subject of pain. I have tried a few things to deal with the pain of bone mets. Spent 2 months lying around taking heavy duty pain meds. Tried radiation, it helped (at least I can walk now) but not 100% Saw the pain specialist and got another prescription. Tried acupuncture, at first that made the pain worse, but it did ease a bit so I made another appointment. Meanwhile I am still taking the pain meds. While taking the pain killers I am afraid to drive so I stay home a lot. Thank goodness for the computer and this site, it helps keep me relatively sane.0 -
MusicLover- I was Vegan all last year. I actually went to The Block Center saw Dr Block and followed his Life over Cancer diet. It allows deep water fish. Took all his supplements he recommended. But the cancer came back. did it slow it down? who knows. I put my faith in drugs now, my diet kind of sucks now. fell off the vegan wagon. eating meat etc. am just not getting enough veggies right now since beging redx in oct. will probably go back to vegetarian with monthly steak. OMG I love steak!!0 -
Romansma, I had nausea with Vicoden too. Two things helped. Dark chocolate in small doses. I've read on these boards that it's helped others too. Like get a big candy bar and eat one little square. The other thing that helped me is that Vicoden makes me a bit dizzy. I tend to have hay fever and it sometimes affects my ears. So a doctor suggested taking a Claritin (or similar) and it helped. I had mentioned the dizzies and accompanying nausea and told him I felt like I needed a dramamine in bed (dizzies worse there) and he said dramamine has an antihistamine, so he suggested Claritin. And it did help!
Good luck!0 -
Hi Sissy, No problem, I was just curious. I don't know if it is that I am adjusting to femara or if it is that I am taking it later in the day but I seem to be sleeping better and my early morning (4-5am) hot flash that has been waking me up is not as bad. It might be since I am taking it at @5-6pm each day instead of 8am (I got this tip from someone else on the board). I moved it by an hour a day until I got to the later time. I also seem to have more energy during the day probably since my sleep at night is better. I did take a pseudo nap today for about an hour but I really feel a lot better today. It is hard to say how much my stress over all of this is effecting how I feel too (who knows). I also want to mention that the se's didn't start kicking in until about the beginning of the second month. Since I am not post menopausal I get a monthly Zoladex shot, so during the 1st month I got one last period and therefore, I don't think femara really kicked in until the second month. I am just so glad that it seems to be working for me, yeah! I hope it works a long, long time!!! I hope your HT works for you too!
The only weird thing this month, is that around my belly button feels funny since the last Zoladex injection. Like bloated or something, or even the feeling of a hernia. I think I am just paranoid, I hope that's all.
(I just turned 50 also. My saying is that I guess I reached by expiration date...I really hope not. I pictured being like my Mom, I took her out today since she doesn't drive. She is 77 and I hoped to reach that age too. I thought I would enjoy retirement with my husband and to help my kids with their children...this sucks! There I said it... it really sucks! I want a miracle, I really, really do!!! And there I go again. I think we all deserve to die of old age, not cancer. )
I was just reading Conquering Any Disease by Jeff Primack and I did so many things wrong...I drank about 16oz of soda at lunch everyday, opted for pasta or a burger instead of a salad, over cooked my vegetables, hate too much sugar and barbequed red meat (not the grass fed kind) 4 times a week, at least. If I could just have a do-over.... I knew I was acidic as opposed to alkaline and I scoffed at that and all of the other health food stuff and well here I am. I do realize that there are health food nuts that have had breast cancer and vegans and vegetarians but I think I just like beating on myself sometimes.
Sorry... I went on a rant tonight! But thanks for listening....you all are great!
I have to think grace and dignity and enjoy the days that I have, you never know what is going to happen in life right? (This still sucks!)
I keep trying to pretend it's not real so I can get away from it. Any of you do the same?
PS - It was my greatest fear...bc, that is. Weird, right? You think I would have prepared for it better but nope, I tried to run away from it and caught me threw me to the ground and trampled over me.0 -
aaoaao. I just wanted to add about taste alterations...paper plates, plastic silverware, nothing metal you see. Try everything your old favorites will return later.
Anita0 -
Hi MusicLover! You haven't had much time to assimilate the information and it takes time. This disease SUCKS - could not agree more! You've been diagnosed with cancer and tossed into menopause simultaneously. No wonder it's an emotional time! And it takes time to get yourself sorted out emotionally.
I was getting the Zoladex shot too. I was pre-menopausal (barely) and so they gave me the monthly shot for about 8 months. I got my period the day after the pin was put in my femur. Talk about insult to injury! Now they've decided I don't need it any more, which is good, but I'm feeling a bit hormonal. A couple of times, my tummy had an odd/sore spot after the Zoladex and thought I was just being neurotic. All is well now.
If it's any consolation, it seems like what you're feeling is pretty much how I felt after my dx. I read something a few months ago about dealing Stage 4 with breast cancer. It described all the "normal" feelings, thoughts, etc., like blaming yourself, wishing for a do-over, ignoring it, etc. And it was exactly what I was going through, thought and emotion wise. I asked my counsellor if I was in denial and she said that I'd only be in denial if I was refusing treatment. I also went to counselling years ago after a divorce and the counsellor talked about "grieving the loss of expectation." Everyone has expectations of what their life is going to look like in the future. Before cancer, mine was retiring, doing nature photography with my husband, doing some part-time consulting on projects I was interested in, etc. Now that "expectation" is gone. It may still happen, but with the initial diagnosis (and my former oncologist who told me to plan for hospice!), it was all gone. I remembered the "grieving the loss of expectations" and I had a damn good cry. Or two. Or three. At some point, something shifted, and I decided I was pretty well over the chronic pity party. It was getting a bit boring. And I decided I needed to reinvent my future. I still have pity parties, fear, wish for do-overs, etc., but it's farther in between them and they don't last as long.
Take care,
Terre0 -
kiwicatmom....I forgot to mention the dizzy spells....I've been having those periodically too. Thank you! I will try the Clariton.0 -
musiclover if there is one certainty with this disease its that we still do not know what causes it. diet alone is not the whole storey. There are many different factors combined and some we had no control over - genetics for example. I asked my oncologist of I need to give up wine he said "no if only it was that easy.
I have been a vegetarian for 26 years, occasional seafood and fish, lots of vegetables and no processed food (apart from chocolate and I'm still in this club
do not beat your self up about that. We just dont know causes it!0
