Bone Mets Thread
Comments
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Thanks, Amy. It's surprising, since I teach 1st grade, where my vocabulary tends to be a bit more basic:)
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Maybe that's why you're so good, Caryn - you are used to explaining things!
And well said!Amy - thanks for speaking up; I was upset by the "competition" comment as well but was taking the "chicken" way out and not speaking up. I feel very connected to the people on these boards, and especially in this thread. You all keep me sane, keep me hopeful, keep me connected. There is not an hour that goes by where I don't realise how lucky I am to be stable and to "only" have bone mets. And there is not a day that goes by where I don't feel guilty for being in such good shape when there are others who are likely more deserving of a good outcome than I am. There is survivor's guilt (more or less) that goes with this whole thing. So, saying that this is a competition really made me feel like crap because that wasn't my intent.
As Caryn said, we should be able to celebrate the success of others without feeling it's a competition. When something good happens to a friend, we're happy for them. I think I can safely say that we all want a cure for ALL of us and for all of us to look back on this 30 years from now and laugh together.
Hugs to all,
Terre
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The doctor says it is probably TMJ. She is very wrong. TMJ does not cause numbness, to the best of my knowledge. This showed up the first time just before they diagnosed mets to the bone. It went away with anastrazole treatment. Now it came back. Also, from the PET report: "Numerous skeletal metastases including the ramus of the mandible on the right side ....." That is where the pain and numbness are. This doctor is an idiot. OK. Maybe not an idiot, but as I suspected, she is not looking at what is going on with ME!!!!! I'm sorry. I'm SO angry. I'm SO fed up with idiot doctors. Amy, I'm not calling you an idiot. Please don't think that. You don't have my medical records. Oh Lord have mercy! Oh well. I will take the report to the dentist tomorrow, so he can call Dr. Dimento maybe and tell her she is way off base. Oh man. I am so upset. The tears are coming now.
Earlier I tried to contact the psychiatrists that the nurse coordinator told me of, for the purpose of switching away from the disrespectful Nurse Nancy. 2 are inpatient and day treatment facilities. The other has 2 doctors. They placed me with one because I had been hospitalized before. Only that one deals with people who have been hospitalized. This sounds very promising NOT! Again, they were disrespectful, dismissing everything I had to say. I wanted them to spell the doctor's name. It is unpronounceable. They told me to "just hold on" and proceeded to demand that I spell MY name to them.
I'm putting my life in the hands of these people for crying out loud. This is BULL!
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Dunesleeper, I'm sorry to barge in on this thread, but your post really concerns me. I too have mets in that area and it had to immediately be identified that there continued to be proper blood flow to the area. Can you perhaps get an MRI done to check? Make a stink if you have to (tears may work too). Please......PLEASE don't let anyone blow you off.
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Oh Dune, I am so sorry! I agree with Leggo (who's not barging in - you're so welcome here!) - jump up and down, rant, cry, rave, do what you have to do to get their attention. Wish I lived closer, they'd get to see the Ugly American (me) up close and personal on your behalf. I was not called the "blonde bitch from hell" by a contractor for nothing.
I'm usually a really nice person, but when someone crosses a line, I am the BBFH. And your doctors have crossed my line by screwing around and being idiots. In the absence of bitch slapping your medical team, sending hugs.
Terre
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Dunesleeper, I know you're not calling me an idiot...I know that. I am so sorry you are not getting the help you should. How very frustrating. After learning more about your before and after, I agree it's probably not TMJ and your doctor should know too. I really hate when they blow you off and try to minimize symptoms and treat us like screaming mimi's.
I do hope you get to the bottom of this soon. Please know we're here for you.
Amy
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Thank you all so much. I have called them back and am awaiting another return call. I was clear that I was upset and that this is not TMJ. We will see. I am sooooo ready to call my first onc and just may do that tomorrow. Wow this thing hurts. I'm wondering if I should apply heat or cold. I can find nothing about relieving the symptoms, only the importance of diagnosis and treatment. It's the mental nerve that is involved.
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So much I related to and want to respond. I understand Myra's statement not because it's a competition but sharing good news sometimes Feels like a double-edged sword. Excited about your own but so aware of others pain because we have all been there in spades! I am so sensitive to that myself. But my feelings towards everyone here is so loving BECAUSE we have such a connection through this disease. I don't think anone here wants to hurt or alienate others....if it happens, it's an inadvertent side effect of sharing so much intensity.
Congratulations Sharon!
Oh and dune sleeper, I had THROBBING teeth post one of my treatments. Because of the Zometa I tell the dentist everything because of the necrotic jaw RARE side effect. Throbbing teeth went away with no explanation!
Hope all is well!
Love to you all!
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How we express our feelingsabout our condition at stage IV, QOL, pain , relationships, what we can or can't do, is an issue near and dear to my heart. I never want to have to censor my own happiness or my celebration of someone else's good news (or apologize for it) , simply because others are having a harder time. Nor do I expect anyone going through a rough time to have to censor their feelings. At any given time, someone on the stage IV boards is dying, living, happy , sad, in pain or living it up. It is all part of our reality and all legitimately part of stage IV life. We are all keenly aware of this and know that today's exciting adventure can turn into tomorrow's critical hospitalization.
So let's, unapologetically, enjoy everyone's good times and support everyone through tough times. No competition, no jealousy because this is simply the way it is
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HOORAH !
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HOORAH!!! Indeed Valerie.
They called back. Of course the doctor was no longer available for the nurse to consult with. She will talk to her in the morning and call me. I'll ask the dentist if he can xray it and share it with the onc. I'm applying heat to it now. Heat should help blood flow. It might. I will let you all know what happens in case this happens to others.
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Oh yes, we're all in this together and here for each other, good or bad.
Dunesleeper - if there is one good thing, it's that you are proactive. Good for you! I have my share of Dr. Incompents and not so bright nurse and they get my blood boiling. Keeping abreast of all our reports/results is a must in my opinion. I'll just never say it enough...
Jaw pain is horrible - mine turned out to be a sinus infection. I also have a lesion in my jaw but not aggressive. It just pops all the time when I eat and makes a horrible noise (so elegant and discreet lol).
Sending you good vibes - Linda
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Dune - glad you're being proactive. I have osteonecrosis of the jaw (ONJ) and it sucks! They took me off zometa because of it. Hope yours is nothing to worry about, but toothaches are awful.
Caryn - well said. It is life, and we shouldn't have to censor our happiness, grief, pain, anguish, laughter, etc., especially here. We should be able to laugh with each other, cry with each other, and hang on to hope together.
Not to sound pathetic or whiney, but this is the only place I can really express what I'm feeling. Everyone around me just wants me to be strong and they don't want to know when I'm scared, depressed, or having a pity party. They mean well, and I'd rather have them treat me as though nothing is wrong than to pity me. But sometimes I just need to vent to someone who understands. And the support I get here means the world to me.
That said, if one of you wins a Ferrari, I will be honestly happy for you, but I will be a tad jealous.
I'll only tell you about the happy part though. Human nature, I reckon. Hugs to all,
Terre
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what I said was taken so out of context I had to reply! I was going to just go away and not do this anymore, but decided that is the way I always handle things. Thank you Valerie for attempting to understand I was not being mean ,just the opposite. I was being compassionate to the women who were not as fortunate as we are and their bca had moved on. I applaud all the good stuff that is written but feel for the women who have written about their cancer coming back in horrible waysand metastisized in other areas. I thought this was a safe place to express it, I guess I was wrong. Being chastised for my empathy really sucks.
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Myra, We appreciate your empathy. I think that perhaps sometimes the written word doesn't translate the true meaning of what someone is trying to say because tone, facial expression, intent are not obvious.
I don't think anyone was trying to chastise your for your empathy. We all have huge empathy for one another. I think the word "competition" is what may have caused part of the misunderstanding. I will admit, it totally tripped my trigger. I felt hurt, chastised, and like this isn't a safe place to express the good along with the bad. It certainly pressed my "survivors guilt" button. I am sure that wasn't your intent, but we all like to feel this is a safe place to "talk". If I could trade places (or dx) with someone younger than me, especially someone with younger children, so they could have zero progression on Femara alone instead of having to deal with chemo, etc., I would do so in a heartbeat.
I am glad you did speak up instead of abandoning the boards and I hope that you get the support you need here.
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Myra - I don't think your post was offensive in any way or form. Please keep posting. This friggin stage 4 journey brings up so many emotions, and for me this thread is the only place where I can express them. I know that nobody here wants to hurt anybody. These virtual conversations are not always easy, but we all care for each other deeply.
Linda
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Glad you came back Myra. Yes, it was the word "competition" that was a hot button. There is no competition here and all of us are very well aware of our sisters who are dealing with more difficult situations. Wenever forget that and know that tomorrow it could just as easily be us.
Caryn
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Terre, can you tell me more about ONJ?
I do believe I will try a lidocaine patch on my jaw for tonight. Can't take more pain meds.
It's still numb on the outside and achey on the inside. Weird.
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Hey Dune,
This is the very nonmedical explanation of ONJ. When you take bisphonates (like Zometa), you are at risk for ONJ. ONJ usually only occurs when you have major dental work done, which is why (most) people are advised to get dental work done before they start infusions. I wasn't told this, and it may not have mattered because I had a nearly invisible crack in a tooth. It got infected and until they extracted it, they couldn't figure out exactly what was wrong with the tooth. Anyway, I had the tooth out and it was almost healed when I felt this sharp "spike" thing along the inside of the gum. It got worse and started to hurt like mad. Went back to the oral surgeon and he diagnosed ONJ. It's basically that the bone develops major weirdness (that's not a medical term) and starts poking out through the gums. You can get a bone infection from it. So I had to do this yucky mouthwash numerous times a day and also rinse with saltwater. I got some over the counter stuff with litocane in it and put it onto the sore area with a swab. It helped. For several weeks, it hurt to talk, to eat, to drink, etc. I could only drink through a straw and lived on iced coffee and jello for about a week (no weight loss, unfortunately). It finally healed over. The key to keep it at bay is keeping your mouth and teeth really clean. I have a standing prescription for antibiotics and when I feel it coming back (based on pain and so forth), I start using those. I also get my teeth cleaned a lot and brush a lot.
Here's a more medical explanation: http://www.rheumatology.org/Practice/Clinical/Pati...
There wasn't any numbness with my ONJ, just this sharp piece of bone inside my mouth (it cut my tongue!).
Good luck!
Terre
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In just going to have to make one more comment so I can sleep tonight. I'd regret not saying anything. Having blood flow impeded in your mandible (whether it's ONJ or tumor) is way worse than if it were in your upper jaw. The results of bone death there can be devastating. Since you mentioned it's in your lower jaw, that's what worried me and had me a little anxious about nobody really listening to your symptoms. An x-ray isn't going to cut it. The blood supply has to be checked with an MRI with tracer dye or some other test where they can get a visual of the blood flow (there might be another way, not sure). Unless you get a reasonable explanation from your dentist about why your jaw is numb, I wouldn't let this slide. Hope you have some luck with your dentist, but this seriously sounds like something your onc should have investigated.
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Great info Leggo! That's something I didn't know and I have ONJ in my lower jaw. Thanks!
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Oops, meant to say CT, not MRI, though they can probably do either?
Ya, KiwiCatMom, once there's numbness like dunesleeper is having, I'd be making some noise until I got answers.
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I would too Leggo. But then I'm loud anyway.
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Thank you leggo. I'll try to get the dentist to rule out dental problems. Hopefully I do get a call from the doctor's office. Still numb on the skin, pain in the bone.
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I know this may sound wacky, but I have had TMJ for 30 years. To relieve pain in my jaw, I take a pencil, place it horizontally across my mouth so my teeth are resting on it and the jaw muscles are relaxed. Then take ice packs to both sides of the jaw. 20 minutes on, 20 minutes off if you can stand it that long. That should relax the muscle out of spasm if it is TMJ. My symptoms do include facial numbness, cluster headaches, sore throat and dizziness. Good luck
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In general ,this forum is a safe place to express your feelings. Sometimes you may encounter otherwise, tho rarely it is intentional to hurt another. It most often is a misunderstanding. We are allowed to have differences of opinions. We are not Stepford wives. I don't agree with up and leaving when you encounter the occasional friction that is going to inevitably arise . Stick around for goodness sake. Take a break if you must, but by all means, hang in there.
Ladies, we are all tough. Emotional at times, sure. But we are tough.
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I am at the dentist now. We'll get this figured out. I've been feeling so afraid. I'm so disgusted with doctors. The dental hygienist gave me more attention, asked more questions than onc.
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By the very nature of the reasons we are all on this board, there is a lot of emotion expressed, and it runs the full gamut between joy and sorrow. Those emotions are sometimes expressed very articulately, other times not so much. But trust and empathy are what makes this all work. We may stumble in our expressions of our thoughts and feelings at times because we are human beings living under great duress, but we are all here to support each other and that is sometimes a little messy. The important thing is that no one means to hurt or offend anyone, and we have to cut each other some slack when things don't show up on the screen exactly the way we meant them to. Families "fight", and this is an extention of families for some of us, but they also love. So let's let love and compassion rule here always.
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Thank you Mamma Ray. I'm feeling the need for prayers.
We have my 3 year old great nephew today. My gosh he is loud. Cute though.
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Dune - he's adorable! Hope you're feeling better.Linda
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