Bone Mets Thread
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H all.
Popping to answer a few questions up above. Pain after radiation has greatly subsided. I got new pain and am having more radiation to the hips, 10 treatments so i'll report in again about pain abation. The RO answered my question today about bone marrow mets and said yes I do have it in my marrow throughout. Unfortunately, I saw all the met spots in my spine, I was surprised to see all the spots, much more than even the MRI reported. They must have skipped over the very little spots that was pointed out to me today. I was also told that if I hdn't had the rdiation to my largest spot, it would have paralized me. He also said that radiation will be used frequently if needed to spot treat areas that aren't getting smaller whenever they might be a threat in some way for more damage. for instance the pain I've been having in my left hip is right in an area where the hip joines the spine and its part of what causes the leg to lift and move, like when you get in a car and swing your leg up and over. If I don't get it treated now, I may have a pelvic fracture next. I saw someone above has that and its very painful.
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does anyone else find the words "we treat as a chronic disease" offensive in a way? I just feel this "chronic disease" is not comparable to chronic high blood pressure disease or chronic diabetes. Diabetes and high blood pressure won't eventually stop working or resonding to medications like this cancer will. grrrr
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Sonny, I got the impression that the blood counts were slow to rise and that is why chemo would become hard to do. It is a huge decision. I haven't heard anyone here talk about it. Going to see what my MO says about it. I am not sure that it is something that I want to do and not be able to take chemo then if needed due to supression of the bone marrow.
My radiation treatments have always made my bones sore. If I rub on my right femur/thigh now after 22 treatments, it is sore.
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Rangermom.......I actually prefer the "chronic disease" idea. It means that it's something I will always have to deal with but can also live with. The term that bothers me is "pallative"......this makes me feel like they're saying "well, we know it's hopeless and you're going to die, so we'll just do what we can to keep you comfortable." When they write me off, that's what gets me going!
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Yes, palliative gets me going more. It's as if they're saying 'no hope' and 'waiting for god' although I've just actually looked up the meaning of the word and it says it's treatment and care for patients with a serious or chronic disease WHATEVER the diagnosis or prognosis is. I always thought that palliative care was that given to a terminal patient once treatment stopped working. You learn something knew every day!
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*new. Who invented this automatic spellcheck thing!
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From reading my CT, MRI and PET scans I found out there is cancer in the marrow of my bones that also have lesions. I really need to ask more questions about the exact "properties" of a lesion. What's the difference between that and a tumor/mass?
The weather (cold and wet) really does make my nerve pain worse. It makes dog walking a real exercise in pain.
Trying to figure out about the exact nature of each bone cancer (and the pain that needs managing) is like trying to unravel a REALLY messy ball of yarn. Keep at it girls. (Yeah, ya gotta love that slimy, sneaky, bdas***d--cancer.)
Have a Happy Heart Day with your precious loved ones!
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I'm not bothered by the term chronic. It implies that disease can be managed over an extended period of time, although not as long as I would like. It also gives me hope that that period of time new and better treatments will be found and perhaps even a cure.
Rangermom,
Diabetes and high blood pressure patients most certainly do die from complications of their disease. I had a relative who passed away after a stroke brought on by high blood pressure that her meds could not control. While these diseases are more manageable than metastatic bc, I don't mind being grouped with them. It beats the heck out of the days when stage IV was a relatively swift death sentence.
Caryn0 -
No one has told me anything about being chronic. I don't like the word when describing breast cancer. There are just too many variables. Find a CURE already!
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Rangermom, I also have a problem with chronic. I admit I don't know much about other diseases but with metastatic bc to 'manage' our 'chronic' condition our treatments are constantly changing and unfortunately failing. I don't think the other chronic diseases are dreading tests every three months to see if their treatment is working or not. We go into each knowing that it will eventually stop working and that places a heavy emotional toll on us.
Kay, I have come to learn and understand that pallative just means that the care gives us relief from our symptoms but not actually 'fixing' anything. It can be used in conjunction with treatment not only at end of life.
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I don't like palliative either! I'm ok with chronic but the actual medical definitions of these words are a little different than what I think when I use them. If chronic means at least 30 years and palliative means pain control then I'm ok with it lol!
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This reminds me of something I just remembered. My mom has a friend who has had at least 4 different kinds of cancer. She recently was dx with diabetes and she told my mom she hates it and its worse than any of her cancers. I don't know what they all were but one was a type of lymphoma and one caused her to have surgery where they removed a huge section of her butt and she wears padding there. Poor lady.
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I say call it whatever you want, just be aware that as of yet there is not a cure
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Thanks, I will try not to forget that
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I hate both words, they both depress the hell out of me. But then again, so does Stage IV cancer. What are we to do? It is all part of the cancer circus. Hugs, Renae
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How about "chronic bone mets". Forget the stage 4 part!
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It could be called chronic bone mets except that its also been known to attack the lungs, liver and brain. So, how about chronic breast mets? That aught to do it. I have chronic breast mets. I like the ring of that. Lol
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Swimmom,
I took Tramadol for arthritis pain in my knee. It worked well and I did not have any SE's. I also have bone mets.
Terri
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lol I like Chronic Breast Mets too Tree, CBM, we can start a new acronym
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I like chronic anything over terminal any day!
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People with chronic diabetes or high blood pressure have opportunities for cures through diet, lifestyle changes and/or exercise, we don't. That's the diference i see between our chronic disease, ours isn't curable
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Ranger mom, what about the alcoholic or addict? There is no cure for them . What about other stage 4 cancer victims who have no treatment and die? What. About them? At least we have treatment. At least we have treatment and that's a good thing. Please understand that that's a good thing. Im feeling very sad for you.
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Yes, I guess you're right, though usually not type 1 diabetes. Oligomets have 1-2% cure rate. Not much to bank on but a start.
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Chronic disease or what ever else it is does not matter. There is no cure for us right know. Who knows what will happen in our futures. It's great to have hope that's the only thing we have. So if somebody says chronic I will take that. It beats terminal. Who wants to here that. Unfortunately we all here were dealt the bad card and some how we have to learn to live with it. None of us have experation dates on our foreheads. So we leave chronic disease in our world it makes us feel better. why take it away. I tell everyone a have chronic disease. Am I ignorant probably but who cares.. Maybe I will meet NED one day.
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Word are just that words........i think its more important than naming something is working towards having a good life and feeling as well as we can under the circumstance. If we dwell on all the negative things the positive gets lost and we loose out on something that is very precious..........life.......in all its forms.
I take Tramadol for pain relief but have found it works best if taken in conjunction with paracetamol.
Love n hugs. Chrissy
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Chrissy, you are so right. I have been under the weather the pain is so bad I could barely move. I called my doctor to get pain killers he told me to take aleve. I think I need something stronger he does not seem to think so. I asked him for tramadol because alot of women on this site use it and get great results but My doctor told me just to take aleve.
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Chrissyb I also take Tramodol, but for arthritis in my knees and lower back. It works pretty good for me. I have no pain in my hip where the cancer is located. I have learned to except that I have cancer, I don't dwell on the negative, I look forward to my chemo each week. I had my 7th Taxol infusion today. My hair has finally started to shed and my finger and toe nails are dark, I am glad to see these side effects finally because it lets me know the tx is working. To date I have not needed the Neulasta shots. I think we all have different views on our cancer journeys and none of them are wrong. May God Bless us all!!!
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Stellaratovsky you need a new Dr. He works for you, if Aleve is not managing your pain he needs to at least try something else. It's your body.Imho
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Macyhen11, I just started to take aleve today I have been on advil which does Zilch for me. I look like a mummy with all the hot and icy patches. I think if it wasn't for the patches I would have ripped my hair out. The doctor told me to try aleve and then if it does not work we will look into other options. I did ask for tramadol but he said to do aleve.
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I guess it's just the difference in how the Dr's treat us. Naproxen ( Aleve) and ibuprofen sometimes work for me but when they don't I have the Tramodol. Hopefully the Aleve will work for you and you won't need anything stronger.:-)
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