Stage 4 breast cancer - dealing with bone and muscle pain
Foxlairfrm
Comments
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I am so very sorry to hear
I am so very sorry to hear this. What do the Dr's say about the swelling and pain? I'm so sorry you are having so much pain. I wish I could be more help to you. I will keep you in my prayers and thoughts. Take care darlin Kay0 -
As you've had radiation -
As you've had radiation - you might want to talk to your Dr about the swelling in legs and lymphedema. Radiaition can be a cause and the sooner you address it - the better. Swelling in legs can be an indication of heart or kidney issues. Talk to your DR ASAP.0 -
Hi.
So sorry that the beast is back. Yes my ankles were the same size as my thighs for a while. In fact it just went away when I stopped the chemo and tamoxifen. It took 3 days and they were back to normal(this was only a week ago that my treatment plan changed and the swelling was gone). However I noticed yesterday that my left ankle was swollen again but that is better this morning (of course I am now wondering if it is back). I started on new chemo, evist, and Xgeva. This is my new protocol and am hoping this does not happen again!
I assumed it was the tamoxifen as I had swelling when I was on it in 2002 and a lot of the same symptoms. I would check with your doctor. Mine also got worse during my recent radiation again to my tailbones and lower back.
So it really could have been from any number of things.
I can't tell you the relief with the water off. I was having trouble just walking. Until the water was off, I didn't realize how much pressure was in my head either.
My skin was puckered kind of like orange skin on my hips and back from all the fluid and when I walked there was no bounce in the bum. I was like the marshmallow woman.
Wish you the best with all of this. It is a hard journey!
~Carol0 -
I just want to say that I amRague said:As you've had radiation -
As you've had radiation - you might want to talk to your Dr about the swelling in legs and lymphedema. Radiaition can be a cause and the sooner you address it - the better. Swelling in legs can be an indication of heart or kidney issues. Talk to your DR ASAP.
I just want to say that I am sending positive thoughts and prayers.
Hugs, Debby0 -
Foxlairfrm
Thank you everyone. I am seeing the dr tomorrow. It does seem that these Dr's pass you on to the ortho guy or the radiation oncologist. I will make someone give me some answers.0 -
You deserve answers and helpFoxlairfrm said:Foxlairfrm
Thank you everyone. I am seeing the dr tomorrow. It does seem that these Dr's pass you on to the ortho guy or the radiation oncologist. I will make someone give me some answers.
You deserve answers and help with the pain you are having. Good luck with your doctor's and let us know.
Hugs, Leeza0 -
Wishing you good luck andFoxlairfrm said:Foxlairfrm
Thank you everyone. I am seeing the dr tomorrow. It does seem that these Dr's pass you on to the ortho guy or the radiation oncologist. I will make someone give me some answers.
Wishing you good luck and good results from your appt. You should get answers!
♥ Kristin ♥0 -
Thank you all for the support. My Dr visit was a bit frustrating because apparently there are no definitive answers to these side effects I am having. There are a number of things that could cause this, each of the medications and the radiation. My tumor markers were down again. Great news! So why would I want to change to another medication even if it is the Femara that is causing this? The Zometa is working on filling in the holes in my bones, again, why change it? Too late to change radiation and if it is that, hopefully I am at "the peak" of damage and should start to get better according to the doc. They did do a Doppler to check for blood clots - none. It would be quite unusual to have clots bilaterally. So, in the end I have Lasix to try, up the time release pain meds and try walking and stretching. One other odd thing- add more protien to my diet, not enough can sometimes cause swelling. Who knew? I have lost 7 more pounds in 6 weeks. I am sure from loss of appetite due to pain meds. That would be a simple solution.Foxlairfrm said:Foxlairfrm
Thank you everyone. I am seeing the dr tomorrow. It does seem that these Dr's pass you on to the ortho guy or the radiation oncologist. I will make someone give me some answers.
Again, thank you all for the support, it has been very comforting and helpful. I am trying to do a daily blog. I have a ton of support at home from a wonderful husband. Sometimes though there are thought and things you just don't want to say for fear of worrying them. It does seem to help me.0 -
I am in the same boat: boneFoxlairfrm said:Thank you all for the support. My Dr visit was a bit frustrating because apparently there are no definitive answers to these side effects I am having. There are a number of things that could cause this, each of the medications and the radiation. My tumor markers were down again. Great news! So why would I want to change to another medication even if it is the Femara that is causing this? The Zometa is working on filling in the holes in my bones, again, why change it? Too late to change radiation and if it is that, hopefully I am at "the peak" of damage and should start to get better according to the doc. They did do a Doppler to check for blood clots - none. It would be quite unusual to have clots bilaterally. So, in the end I have Lasix to try, up the time release pain meds and try walking and stretching. One other odd thing- add more protien to my diet, not enough can sometimes cause swelling. Who knew? I have lost 7 more pounds in 6 weeks. I am sure from loss of appetite due to pain meds. That would be a simple solution.
Again, thank you all for the support, it has been very comforting and helpful. I am trying to do a daily blog. I have a ton of support at home from a wonderful husband. Sometimes though there are thought and things you just don't want to say for fear of worrying them. It does seem to help me.
I am in the same boat but have not had the swelling: bone mets and on zometa and arimidex (nearly the same as femara). There are days when I am achy and tired, but, like you, the alternative is unthinkable. I am also on a little lexapro (antidepressant) which helps with my mood, but also can help with pain. This from the Mayo Clinic:
"The painkilling mechanism of these drugs (antidepressants) is still not fully understood. Antidepressants may increase neurotransmitters in the spinal cord that reduce pain signals. But they don't work immediately. You may feel some relief from an antidepressant after a week or so, but maximum relief may take several weeks. Pain relief from antidepressants generally is moderate." http://www.mayoclinic.com/health/pain-medications/PN00044
I also recommend having one of your docs check your vitamin d level as, if it is not optimized, this can also increase our pain. It is checked with a simple blood test. Don't just add vitamin d (been there, done that) as you could still be way off. See:
Vitamin D Reduces Aromatase Inhibitor Pain
Still, between aging and cancer, there are some achy days. I swear by thermacare heat pads. They are pricey but I print out coupons and then get big boxes at Wal Mart or Sam's (no Costco here). I put them on whatever part is hurting and get some relief for 6-8 hrs--yay!
FYI, my mets is in my ribs, so that is probably why no swelling.0 -
Once again, THANKS. I amCypressCynthia said:I am in the same boat: bone
I am in the same boat but have not had the swelling: bone mets and on zometa and arimidex (nearly the same as femara). There are days when I am achy and tired, but, like you, the alternative is unthinkable. I am also on a little lexapro (antidepressant) which helps with my mood, but also can help with pain. This from the Mayo Clinic:
"The painkilling mechanism of these drugs (antidepressants) is still not fully understood. Antidepressants may increase neurotransmitters in the spinal cord that reduce pain signals. But they don't work immediately. You may feel some relief from an antidepressant after a week or so, but maximum relief may take several weeks. Pain relief from antidepressants generally is moderate." http://www.mayoclinic.com/health/pain-medications/PN00044
I also recommend having one of your docs check your vitamin d level as, if it is not optimized, this can also increase our pain. It is checked with a simple blood test. Don't just add vitamin d (been there, done that) as you could still be way off. See:
Vitamin D Reduces Aromatase Inhibitor Pain
Still, between aging and cancer, there are some achy days. I swear by thermacare heat pads. They are pricey but I print out coupons and then get big boxes at Wal Mart or Sam's (no Costco here). I put them on whatever part is hurting and get some relief for 6-8 hrs--yay!
FYI, my mets is in my ribs, so that is probably why no swelling.
Once again, THANKS. I am going to check with my oncologist about switching to high dose D. xoxoxo Lynn0 -
I'm sorry
your back with mets to the bones. Dealing with pain and swelling of the ankles is not fun. I have osteoarthritis and often have swollen ankles. I have to remind myself to elevate! I also take extra Vit D. Since chemo and rads, I have issues with leg & foot cramps. Nothing about this is easy. I hope you get some relief. Even though you feel your meeting with dr was frustrating, what's the alternative? We do what we have to do. I have found zero relief for my hot flashes but I'm staying on Arimidex.
{{hugs}} Char0 -
thanks!CypressCynthia said:I am in the same boat: bone
I am in the same boat but have not had the swelling: bone mets and on zometa and arimidex (nearly the same as femara). There are days when I am achy and tired, but, like you, the alternative is unthinkable. I am also on a little lexapro (antidepressant) which helps with my mood, but also can help with pain. This from the Mayo Clinic:
"The painkilling mechanism of these drugs (antidepressants) is still not fully understood. Antidepressants may increase neurotransmitters in the spinal cord that reduce pain signals. But they don't work immediately. You may feel some relief from an antidepressant after a week or so, but maximum relief may take several weeks. Pain relief from antidepressants generally is moderate." http://www.mayoclinic.com/health/pain-medications/PN00044
I also recommend having one of your docs check your vitamin d level as, if it is not optimized, this can also increase our pain. It is checked with a simple blood test. Don't just add vitamin d (been there, done that) as you could still be way off. See:
Vitamin D Reduces Aromatase Inhibitor Pain
Still, between aging and cancer, there are some achy days. I swear by thermacare heat pads. They are pricey but I print out coupons and then get big boxes at Wal Mart or Sam's (no Costco here). I put them on whatever part is hurting and get some relief for 6-8 hrs--yay!
FYI, my mets is in my ribs, so that is probably why no swelling.
Great suggestions about the vitamin D. I will definitely talk to them about that. With the anti depressents, does it make you feel weird? I tried one once many years ago that was supposed to help with the hot flashes but I hated the way it made me feel. I would rather deal with the flashes. I'm very sorry to hear about your mets. It's devistating news. After nearly 15 years, I can't believe its back. I have mets in both Femurs, some ribs, nearly my whole spine and I broke my left humerus in half and now have a pin in it. I suppose the pain could be worse. At least I can get around, still work some but I can hardly get on my horse. Stretching is making some improvements. Thanks again and good luck. Please keep me posted on any other suggestions. I also don't like the long term diagnoses 2 to 5 years? I think I can do better than that, my tumor markers keep coming down!0 -
I also had a lengthyFoxlairfrm said:thanks!
Great suggestions about the vitamin D. I will definitely talk to them about that. With the anti depressents, does it make you feel weird? I tried one once many years ago that was supposed to help with the hot flashes but I hated the way it made me feel. I would rather deal with the flashes. I'm very sorry to hear about your mets. It's devistating news. After nearly 15 years, I can't believe its back. I have mets in both Femurs, some ribs, nearly my whole spine and I broke my left humerus in half and now have a pin in it. I suppose the pain could be worse. At least I can get around, still work some but I can hardly get on my horse. Stretching is making some improvements. Thanks again and good luck. Please keep me posted on any other suggestions. I also don't like the long term diagnoses 2 to 5 years? I think I can do better than that, my tumor markers keep coming down!
I also had a lengthy remission: 22 years! A few of my physicians have told me that this is a good thing and one said that my cancer, for me, may be a "chronic illness"--maybe not even what ends up killing me. I sure like to believe that and so I choose to ignore statistics. And, every year, more of us with mets are living longer:
"There is a recent study published by M.D. Anderson Cancer Center in Texas where they looked at survival of their metastatic breast cancer patients over the last 20 years. In the 1970s, only 10% survived five years after a metastatic diagnosis, while in the most recent period, 40% survived at least five years. Those are pretty significant figures for women who are facing metastatic disease. We are making progress."
http://www.breastcancer.org/symptoms/types/recur_metast/ask_expert/2003_09/
I have also had trouble with antidepressants in the past and, for that matter, many meds. I seem to be hypersensitive so I have learned to start low and go slow. I take only 5 mg lexapro (not considered a therapeutic dose), but it works for me. We are all very different chemically and will all react differently to meds. Don't give up because you had one bad experience, because there are a lot of meds out there. But, if you choose to take an antidepressant, make sure your oncologist oks it as some aren't compatible with certain treatments.0 -
Thanks too!Hugs, JanCypressCynthia said:I am in the same boat: bone
I am in the same boat but have not had the swelling: bone mets and on zometa and arimidex (nearly the same as femara). There are days when I am achy and tired, but, like you, the alternative is unthinkable. I am also on a little lexapro (antidepressant) which helps with my mood, but also can help with pain. This from the Mayo Clinic:
"The painkilling mechanism of these drugs (antidepressants) is still not fully understood. Antidepressants may increase neurotransmitters in the spinal cord that reduce pain signals. But they don't work immediately. You may feel some relief from an antidepressant after a week or so, but maximum relief may take several weeks. Pain relief from antidepressants generally is moderate." http://www.mayoclinic.com/health/pain-medications/PN00044
I also recommend having one of your docs check your vitamin d level as, if it is not optimized, this can also increase our pain. It is checked with a simple blood test. Don't just add vitamin d (been there, done that) as you could still be way off. See:
Vitamin D Reduces Aromatase Inhibitor Pain
Still, between aging and cancer, there are some achy days. I swear by thermacare heat pads. They are pricey but I print out coupons and then get big boxes at Wal Mart or Sam's (no Costco here). I put them on whatever part is hurting and get some relief for 6-8 hrs--yay!
FYI, my mets is in my ribs, so that is probably why no swelling.
Thanks too!
Hugs, Jan0 -
Changing oncologistscahjah75 said:I'm sorry
your back with mets to the bones. Dealing with pain and swelling of the ankles is not fun. I have osteoarthritis and often have swollen ankles. I have to remind myself to elevate! I also take extra Vit D. Since chemo and rads, I have issues with leg & foot cramps. Nothing about this is easy. I hope you get some relief. Even though you feel your meeting with dr was frustrating, what's the alternative? We do what we have to do. I have found zero relief for my hot flashes but I'm staying on Arimidex.
{{hugs}} Char
All of the suggestions and support I have received here has helped tremendously! After asking my doctor many of the questions and asking about some suggestions, I really did not get any answers. We have thought it over and in talking to many other people in the same situation, we feel it's time to change. I believe this Dr. Is more of a pain management kinda guy. Some of the symptoms that I am experiencing may not even be cancer related and he has not made ANY suggestions. My family practitioner agrees. I want to thank you all for the information that ultimately could give me many more years under the right care. I would like to see another Dr. In that practice, I don't know how that all works, I hope smoothly.
I also am having leg and ankle cramps. Some of you have the same or similar symptoms and have physicians that at least try different things. Mine does not, his answers are to increase pain meds. Is it that useless to try something? I don't think so!
Again, thank you all! Good luck to everyone. I'm thankful to have found some support.
Deborah0 -
Dog groomingsmalldoggroomer said:I am so very sorry to hear
I am so very sorry to hear this. What do the Dr's say about the swelling and pain? I'm so sorry you are having so much pain. I wish I could be more help to you. I will keep you in my prayers and thoughts. Take care darlin Kay
Kay,
Looking at your name, I assume that you are a dog groomer. Ironically I am too! Have owned my business for over 25 years.
Best to you,
Deborah0 -
Glad you are changingFoxlairfrm said:Changing oncologists
All of the suggestions and support I have received here has helped tremendously! After asking my doctor many of the questions and asking about some suggestions, I really did not get any answers. We have thought it over and in talking to many other people in the same situation, we feel it's time to change. I believe this Dr. Is more of a pain management kinda guy. Some of the symptoms that I am experiencing may not even be cancer related and he has not made ANY suggestions. My family practitioner agrees. I want to thank you all for the information that ultimately could give me many more years under the right care. I would like to see another Dr. In that practice, I don't know how that all works, I hope smoothly.
I also am having leg and ankle cramps. Some of you have the same or similar symptoms and have physicians that at least try different things. Mine does not, his answers are to increase pain meds. Is it that useless to try something? I don't think so!
Again, thank you all! Good luck to everyone. I'm thankful to have found some support.
Deborah
Glad you are changing oncologists. It never hurts to get another opinion. I wish you the best!
♠♣ Love, Susie ♠♣0
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