Bone Mets Thread
Comments
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Amie, looks like I missed welcoming you earlier! I'm so sorry about your dx, but i'm glad you've found us.
Annie, adorable photo of your daughter with the lynx. Is she a big animal lover?
Thank you for the suggestions and PMs about my pain. I've never had gall bladder issues, don't eat meat or anything fatty, and really don't think it's that. Besides, I neglected to mention that I remember feeling something pull as I was trying to get something down from a high shelf in my closet with kind of a twisting motion a few nights ago. Maybe I didn't explain it well, but I do think it's an injury vs. liver or gall bladder issue -- just not sure if it's a "simple" (albeit painful) injury in my shoulder blade, or something more serious due to pre-existing degeneration in at least a couple of my vertebrae. I have to do a CBC again on Tuesday, so unless it gets worse before then, I'll probably try to ride it out until Tuesday.
So I was messaging w/Patty earlier today because I've been worried about her, and she asked me to update you. To quote her, it's been RUFF. She has been vomiting daily and just wants to sleep. She's not sure if it has to do with her new meds (Faslodex+Ibrance) or something else, but even getting on BCO has been too difficult for her right now. She asked me to let you all know, and says she really needs your prayers. She said she's seeing her onc on Monday, but I'll bet she meant Tuesday due to the holiday. Her phone number is on the contact list if anyone wants to message her. I know she'd be very happy to hear from you.
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Deanna, as for your pain, if you could figure out and be sure it is not your heart, then probably you do not have to go to the ER. You might have a pinched nerve caused by any T or C along your black that has been compressed, or a disk. You might need a MRI to diagnose. A pinched nerve along the spine could cast sharp pain to the chest/back and the arms. Try to reduce activities and rest the shoulder / ribcage as much as possible for now. I had it last summer, now I understood, caust by my T9 that must have been fractured for the first time. It took about two weeks for the severe pain under my right shoulder to subside. Hope it helps. So sorry for your pain. Rest well.
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Thanks for the update on Patty, Deanna. Prayers coming her way.
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Deanna, I know you just had your hair done, and my neck and shoulder hurt something terrible from hanging my head into those awful sinks for 20 minutes. Something to think about. Myra
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Deanna, I hope you will be feeling better soon! It was very thoughtful of you to reach out to Patty even though you are hurting yourself. Prayers will definitely be said for her, and for you too. It's scary when we don't feel good.
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Deanna So sorry you are in pain. I do worry for you as yoy say the pain is a ten. Be. careful. I have shoulder pain that starts in my shoulder blade that I think might be refetred from T10 that had radiation tx this winter. My PT says use heat and if it helps it is the right thing.
Thanks for the update on Patty. My thoughts are with her.
Amie sorry you are here. I too had the full meal deal when dx stage II in 2011, and here I am. Just still difficult. to wrap my head around it.
Wishing everyone well..
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Thanks Deanna. She must be feeling very sick. Prayers going out to Patti.
Linda, I'm sorry to hear about your pain but I'm hoping you are feeling better.
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I'm sure you're all tired of hearing about my pain, but just to clarify how it can be a 10 at times and I'm not at the ER -- it's not a steady pain. If I get in a comfy position, it's more of a dull ache. Then when I move -- bam! -- it hits like a knife stab. And if I try to get up or change positions, it will hit again and again and again -- like a stabbing nerve pain. That's why I was in tears last night -- because I couldn't move or change clothes or get in bed without that horrible stabbing pain every few seconds. But if I sit down and find a comfortable position -- especially with pain meds in me -- it's bearable.
I guess one reason I brought it up was that some of you have had Vertebroplasty or Kyphoplasty procedures, and I just wondered if what I'm describing sounds anything like the pain you might have experienced when you had very weakened discs necessitating those procedures.
And Myra, absolutely yes to the possibility that the hair washing position contributed to my pain last night! In fact, prior to being re-dx'd w/mets, I used to wonder why the back of my neck was so tender for a few days after a hair appointment. I chalked it off to an uncomfortable wash station set up at a different salon than I use now. But in retrospect, I think it was an early warning that something wasn't right at the base of my skull.
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Deanna,
I'm worried about your pain levels. I know perhaps you don't like to take pain meds, but maybe for the next few days, allow yourself a little more leeway and take a few extra to get ahead of the pain until you know what you are dealing.
I am so sad to hear about Patti. I have to be honest, I don't think it's the new Falsodex/Ibrance meds. I KNOW everyone reacts differently, but here we have myself and Deanna on the same combo and we are nothing close to vomiting daily. I am sending her prayers and hope she can figure out what is really wrong.
So my friends did come over. I was thinking I would not enjoy myself, as I've been feeling down and struggling w pain, but I had a really nice time. I forgot how much I enjoy these particular friends' company, plus I got to meet my friend's newborn baby Aadi. It was Aadi's mom and dad, my friend Ivana and my friend Theresa with her husband Ray and their son Liam. Liam and my son Oliver played WONDERFULLY together!! It also helped that I drank red wine but now I have a headache so gonna take some ibuprofen. My friends took photos so if they send me one, I will be sure to post it.
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All I know is that Patty has been one of us who has really been through the wringer. I was so happy that she felt better in order to enjoy her sons over the summer. Fight your way out of this Miss Peppermint Patty.
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Hi all,
Glad you got to enjoy your friends Cristina. Really gutted to hear that Patty is so sick. Sending prayers her way.
Deanna - hoping you just have a pinched nerve/muscle strain kind of thing and nothing serious with your spine.
Annie - what a beautiful pic of your daughter and the baby lynx. What a great experience!
Sending lots of love, prayers, and gentle hugs to everyone.
Terre
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Terre, I was wondering if you might, when you get the time, share your diet and exercise with us. I'm just wondering what I should do to help the treatment work better.
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Dune - I know you're not trying to be funny, but you are. Diet - eat what I want. Exercise - jumping to conclusions. Seriously, we eat lots of veg, get our meat from a farmer who uses largely organic methods, get most of our veg and fruit from a local market garden. We have beef (from the farmer) 2 or 3 times a week, chicken once or twice a week, and veg/rice or similar the rest of the time. Exercise: I walk when I can (arthritic knee is the big limitation) and I have a recumbant exercycle that I do 15 or 20 minutes on a couple of times a week. And I do yoga from time to time in the privacy of my own home (Rodney Yee is a hottie in his videos).
I don't follow any rules, and I undoubtedly should. I don't have a routine. My husband does 99% of the cooking. We both need to lose weight and exercise more. My problem is that I love food. And I'm not fond of exercise. I'm hoping that if we get the house we're trying to buy that we'll do more gardening; it has raised beds which is great. I like gardening, but my back doesn't like it that much.
I think there are many others here who have much better habits than I do and who can give you much better advice on diet and exercise to help with treatment. I know there are foods which can cause (and others which can reduce) inflammation, and I'm guessing that would be a good place to start.
Sending you lots of love,
Terre
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Deanna,
My fractured L3/L4 were off the charts pain before my kyphoplasty. Of course, they were also misdiagnosed for months and I had also done 6 physical therapy sessions, which couldn't have helped. Thank goodness the PT was incredibly gentle and patient. In my case, I could actually feel the bones in my hips rubbing against each other because I had about 3 inches of my spine compressed. I even got shorter! Heat did not relieve any of the pain. Changing position definitely hurt the most; getting in and out of the car, trying to roll over in bed, getting out of a chair. The MRI showed exactly what was going on and I was taken care of pretty quickly after that. While I was waiting for the miracle kyphoplasty, prednisone was helpful for the resulting hip pain, which was caused more by compression and inflammation. I hadn't been on narcotics before, but percoset definitely took the edge off the pain. What stood out most for me in knowing it was incredibly serious was the vocalization I was doing. I'm usually not too much of a complainer, especially in front of my kids. But every time I tried to move noises came out of me that I hadn't heard since my first non-medicated delivery. That to me was the clue that this was something much more serious.
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Deanna, The pain you are describing sounds like what I had/have in my upper rib 2&3 which are fractured. The pain feels like it is across my right shoulder blade. I can't carry a purse on that side, and certain positions send burning pain. Can't lift anything over 3 pounds, and can't reach up. I eventually had radiation on those ribs in 2 separate treatments over 2 years. Of course pain meds help, but I know that pain that takes your breath away. I have used lidocaine patches on that area which doesn't help the bone pain but sometimes settles down the tissue inflammation. OXY works the best for me in combo with Celebrex. Hope you find out soon what the cause of your pain is and that you find some relief in your comfortable position. I just thought of something. I can't lay back in a hairdresser's sink either...sets the pain right off. MRI ?
I"m so sorry to hear about Patty. She has been through enough.
Hope...how are you doing? Check in with us if you can.
Christina, looking forward to your new pictures. Glad you felt well enough to have a good time.
Linda E, are you feeling any better?
Xavo, how much pumpkin seed powder do you use at a time? In applesauce?
Thanks to those for the suggestion of a 45 min. Zometa. I will ask my onc. Maybe he will try that instead of Xgeva.
Linda
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Good morning all,
So many of us struggling with pain, just plain unfair. Hoping for better days soon.
I'm a little better this morning. I don't feel light headed or feverish anymore. I've been taking a cough syrup with codeine at night to be able to sleep (codeine and narcos, let's just say I'm waiting for a good poo LOL). My muscles hurt from coughing. Never had the flew in my life but think that's what it is. I look and feel pathetic, swollen and bruised ankle and hip, white as a ghost... that said I'm just so grateful my fall was not any worse. No more crocs sandals for me, back to running shoes.
Deanna - is it any better today?
Cristina - glad you had a nice time with friends. And some wine, you go girl!
Dune - are you back on tx this week?
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LindaL, I took two teaspoons mixed with a little hemp milk the night before last night without going with any carbohydrate (overlooked the instructions). Fell asleep after reading as usually (I usually have OK sleep, but sometimes not deep enough and occasionally had hard time to fall asleep). Last night I forgot doing it.
Dune, just thought of reading somewhere on the boards here that taking a sauna after infusion on the same day to benefit the most. It makes sense. Heat enhances blood circulation. If sauna is not a convenient thing, I think a long hot tub bath should also help in the same way.
Hope everyone have a pain free day!
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Linda E - could you have a UTI? bcs of the fever and you mentioned the burning?? They could even do it STAT if so ordered, so sorry for ur pain.
Deanna - Dani had that type of pain, WAS ignored by Onco, we went to an Ortho he ordered an Xray and right after an MRI, and of course she was in need of radiation. So maybe more scans are in order. I really hope you could feel better soon.
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LindaE, not sure if you are having chemo but I read on a board that chemo can cause bladder irritation as it can burn the inside of the the bladder lining. My bladder gets very irritated after infusions and I have to drink a ton of water. Hope you feel better.
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Dune and Terri,
Firstly, my apologies for posting here (I know I am not welcome), but dune's query to Terri also made me laugh.
I too eat pretty much whatever I want and my diet is virtually unchanged since before bc, but... I had eaten a largely vegetarian diet for years. I do eat chicken or fish if I want and once in a great while, should I crave beef, pork (bad Jewish girl!) or lamb, I eat it! The same goes for other foods that many people feel we shouldn't eat. I try to eat/buy organic but never stress if it isn't. I'd stopped drinking soda, eating chips, junk food and fast food more years ago than I can remember. But again, if I have a craving for Coke once a year., I'd feel no guilt about giving in. My excercise consists of walking (by myself or with my two dogs). I teach first grade, an excellent exercise in itself. BTW, I have always used movement and brain based excerise breaks with my students. Yoga and an online site called gonoodle.com are current favorites. My pain is limited to a wonky knee and the Femara induced stiffness that I get whennot moving (I feel like a 2x4 when I wake up).
I do take some supplements nightly; melatonin, vitamin D , calcium and probiotics.
I spend almost no time worrying about what I eat or don't eat. I don't chase down research and wonder if xyz pills, powder or tea should be added to my arsenal, or eliminated from my diet.
I know many of you are in pain and I am truly sorry and hope that you find relief soon. My apologies for intruding again.
Caryn0 -
mommalthetime and txmom - The burning is gone - sure that was a reaction to the infusion. Drinking a lot of water and unsweetened cranberry juice to flush out of my system. No chemo (yet).
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Caryn, of course you are welcome here!!!!!!
A heart surgeon friend of mine just shared this NYTimes article and I thought I would share it here. Though not about cancer, there's an extremely valuable lesson to be had. http://www.nytimes.com/2015/09/06/opinion/sunday/a...
Linda, glad to hear you're feeling better! I am still shaking my head at the huge mistake in your infusion rate. How in the world did that happen?
Lindalou and Rachel, it was really helpful to know what caused each of you to have similar pain to what I had yesterday. And Rachel, I can absolutely relate to yelling out when the pain hits, which of course if very upsetting to everyone around us. Thankfully, my pain seems better today -- more constant, but more moderate, with fewer stabs. I think it helped to prop my right arm up on a pillow during the night, to take the weight off the vertebrae or shoulder blade or rib or wherever the pain is actually coming from. And Cristina, yes, I have been doing more pain meds than usual, and about to pop one now so that I can hopefully get more accomplished today than the nada I did yesterday.
Speaking of diet & exercise, I am determined now that it's cooling off here to get back to walking. There were a couple of years after my first dx that I did 5 to 6 miles a day, and felt so good. Now I can barely walk the dog without feeling winded, which is not good. So that's my commitment for September, now that's it's hopefully cooling off some -- to make time to walk, even if I have to do it in shorter increments several times a day. Anyone else?
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Hi Deanna,
I thank you, as does my one, grade 1 bone met, which I have not relocated to the suggested area 😉. Pillows, lots of pillows in varying sizes, have always been a great help for aches and pains, whether from aging, surgery or cancer related. I elevate, support, incline or decline the angle to make sleep or relaxing as comfy as possible. I find that, especially while sleeping, it really helps. Plus, I have a very cushy looking bed!
Take good care of yourself.0 -
Yes, Caryn always welcome. Everyone should always be welcome. There are new people on this thread all the time. Everyone's input is valuable and welcome. XO
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Deanna - I'm joining you on the walking. I need some kind of commitment/motivation to start moving. I'm still shaking my head too, but let me tell you, I will never ever let anybody infuse anything without checking and double checking. And I will ask my Onc to switch to Xgeva. Did you start it yet? And so glad you're on the mend.
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Thank you txmom,
I am in a very different situation than most on this thread. I have a single grade 1 bone met, which is necrotic and have been NED for a bit over 4 years. The pain I have is from a bad knee and Femara, but is very easy to deal with. Unlike most, MBC has not really altered my life, but the sword is always hanging over my head. I don't know why I have done so well but I hope my experience can be considered to be just as valid as others, though I know that I am a minority and some feel that I am somehow detracting from the majority experience. Perhaps if we ever figure out why I've done well, it might help others.
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I forgot to add that I bought an adjustable bed frame this spring and a new mattress at my surgeon's suggestion. What a difference! I can change it to whatever my back/spine/ribs need.
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Caryn, mbc is tough no matter what our experience is with it.
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Hi everyone, I am so sorry that so many people are in pain. I hope that you all find relief soon. I have only been on this thread for a few months, but I don't remember hearing about so many suffering here before. I will keep you all in my prayers.
Valerie, I decided not to go to the mbc forum at DF. I am not sure what I would have heard. At this point, I want to hear about hope for new treatments and research, but I am not ready to hear more scary statistics. I know what the stats are, but stats are just numbers and they cannot be applied to individuals. We are all unique. I am still doing very well on Arimidex. I am not suffering any SEs right now. I am hoping this keeps up for a long time. Isolated see my MO at he end of the month. I am hoping my TMs are down. H, and I am NOT looking forward to winter. I think I will run away.
Deanna, I recently began walking again. I had walked 4 miles a day for a few years, but when my dad got sick 2 years ago, I gave up the walking to spend more time with him. I don't regret that, of course, but it is tough to get back into the routine. I was in severe pain from neck to ankles right before my bc dx, so I did nothing at all for a while. Once my tx began, the pain which was from bone mets, subsided. Now I am trying to get back into the routine. I feel good after the walk. It helps my mood.
Caryn, welcome back. As you know, I believe you belong on this thread. You have lots to contribute.
Amie, welcome to our group. You will find lots of support and knowledge from the wonderful women here.
All the presidential candidates make their way to NH, and I have seen many of them in town. The long weekend is a busy time for them. I don't mind that, but the phone surveys drive me crazy. Thank goodness for caller id.
Enjoy the rest of the weekend.
Lynne
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I remembered one other thing I meant to say. I will have my first Zometa infusion later this month. I appreciate all the helpful hints that you have all provided. I will make sure I am well hydrated and that the infusion isn't rushed. I don't understand why doctors don't provide that information to their patients when they schedule the treatment.
Thank you for the info.
Lynne
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