Metastisis to bones

Kats2 · May 2015

Hello. I was wondering if any of you have had a metastisis to the bones, in particular, the spine, ribs, and/or pelvis? I had a very tiny invasive lobular cancer, .02 cent. but had one positive sentinel node measuring .9 cent. I was treated with a lumpectomy and 33 rounds of radiation to the breast and axillary nodes. Because my bc was highly Estrogen positive, <95%, I was put on Arimidex. No bloodwork was done on me for 1 yr and 7 months. In June of 2014 I started having pain in my left ribs.......and then my right ribs....! Imaging showed fractured ribs which was highly suspicious of metastisis. A CT and Bone Scan showed that yes, indeed, my bc had spread! I was and am still in shock....! I was switched to Tamoxifen for 6 months but was taken off in Feb. 2015 and am now getting Faslodex shots in my buttocks once a month. I switched Oncologists and he's checking my tumor markers each and every month to see if this treatment will work at keeping my bc in check. I'm due for my last shots in May and then a decision will be made as to whether I should be switched to a "chemo pill", one of many that can be used.

I went for a 2nd opinion at Dana Farber in Boston and was told that I'm geting the proper treatment for my case and that I can't die from cancer that is strictly in the bones. ( which is where it is and nowhere else....thank God!)

Is there anyone out there who's experiencing what I am?? I'd appreciate any feedback that you can give me......Thanks so much. Kats2

Desmonds1 · May 2015

Hi
sorry to hear about your

Hi

sorry to hear about your bones- I am also ER+ and had "oligio " mets to my pelvis/femor area-

i did TCHP , surgery and 33 rounds of radiation to my chest and about 28 rounds to my hip area-finished in Dec. now on Tamoxifen-

i am scheduled for a hysterectomy(to also slow the estrogen) and then was told in a few years I would switch from tamoxifen to an inhibitor-

best of luck! Keep us posted-

hugs-

Susan

Kats2 · May 2015

Desmonds1 said:
Hi
sorry to hear about your
Hi

sorry to hear about your bones- I am also ER+ and had "oligio " mets to my pelvis/femor area-

i did TCHP , surgery and 33 rounds of radiation to my chest and about 28 rounds to my hip area-finished in Dec. now on Tamoxifen-

i am scheduled for a hysterectomy(to also slow the estrogen) and then was told in a few years I would switch from tamoxifen to an inhibitor-

best of luck! Keep us posted-

hugs-

Susan

About the bones....!

Susan, I was SO happy to hear from you. I don't feel so alone about my bone mets now. I don't know what "oligio" mets means....Can you explain that to me? Also the TCHP......I'm new to all this......What type of surgery did you have??? And do you feel that radiation to your chest and hip helped? I too have some hip pain with mets......but I also have back pain with a compressed fracture of T-9......My Oncologist wants to wait on radiation, and so does the Radiologist.........Are you on any bone hardener like Zometa infusions??? I go every month for that.....I've had 7 infusions so far and they've helped my ribs and bones in general to heal and feel less painful.

How long of a period was it between your original surgery for your bc and then finding out the cancer had metastisized? Also, what type of bc do you have? Mine is lobular. I hope I'm not asking too many questions of you!!!! But it's just feels so great to communicate with someone who is dealing with bone mets too........God Bless you Susan.....I wish you improvement with your health in the future, and that your treatments will bring about many more years of quality living. We're in this together......!!.........

New Flower · May 2015

Kats2 said:
About the bones....!
Susan, I was SO happy to hear from you. I don't feel so alone about my bone mets now. I don't know what "oligio" mets means....Can you explain that to me? Also the TCHP......I'm new to all this......What type of surgery did you have??? And do you feel that radiation to your chest and hip helped? I too have some hip pain with mets......but I also have back pain with a compressed fracture of T-9......My Oncologist wants to wait on radiation, and so does the Radiologist.........Are you on any bone hardener like Zometa infusions??? I go every month for that.....I've had 7 infusions so far and they've helped my ribs and bones in general to heal and feel less painful.

How long of a period was it between your original surgery for your bc and then finding out the cancer had metastisized? Also, what type of bc do you have? Mine is lobular. I hope I'm not asking too many questions of you!!!! But it's just feels so great to communicate with someone who is dealing with bone mets too........God Bless you Susan.....I wish you improvement with your health in the future, and that your treatments will bring about many more years of quality living. We're in this together......!!.........

You are not alone

hi Kats

you are not alone. I also have mets to bones since 2012 and have been doing ok. I undergone various treatment including Faslodex which worked well for me 12 months. Try to keep positive outlook, even cancer is a very awful disease. You can read about my treatments on my personal page. My original was in 2008 included 3 types and lobular as well.

Hugs

Desmonds1 · May 2015

Kats2 said:
About the bones....!
Susan, I was SO happy to hear from you. I don't feel so alone about my bone mets now. I don't know what "oligio" mets means....Can you explain that to me? Also the TCHP......I'm new to all this......What type of surgery did you have??? And do you feel that radiation to your chest and hip helped? I too have some hip pain with mets......but I also have back pain with a compressed fracture of T-9......My Oncologist wants to wait on radiation, and so does the Radiologist.........Are you on any bone hardener like Zometa infusions??? I go every month for that.....I've had 7 infusions so far and they've helped my ribs and bones in general to heal and feel less painful.

How long of a period was it between your original surgery for your bc and then finding out the cancer had metastisized? Also, what type of bc do you have? Mine is lobular. I hope I'm not asking too many questions of you!!!! But it's just feels so great to communicate with someone who is dealing with bone mets too........God Bless you Susan.....I wish you improvement with your health in the future, and that your treatments will bring about many more years of quality living. We're in this together......!!.........

Hi Kats- please don't

Hi Kats- please don't hesitate to ask any questions!

i was diagnosed with bone mets just a couple weeks after being diagnosed with BC- oligio means a small amount- not sure how that translates as cancer is cancer-

i was originally diagnosed as triple positive- ER+, PR + and Her2+ but after surgery my Her2 was no longer showing up-did my chemo get rid of it ? Or did I have two types of cancer? Still unknown-

i did TCHP chemo first , then single mastecomy , then radiation- I was fortunate that my hip area did not cause me pain- now after radiation I do feel some sensations but my rad. Onco says it is my bone "remodeling"-

i am not taking any bone medication just tamoxifen-

on to my hysterectomy next Friday!

Hugs to you and pain-free living!

Kats2 · May 2015

Desmonds1 said:
Hi Kats- please don't
Hi Kats- please don't hesitate to ask any questions!

i was diagnosed with bone mets just a couple weeks after being diagnosed with BC- oligio means a small amount- not sure how that translates as cancer is cancer-

i was originally diagnosed as triple positive- ER+, PR + and Her2+ but after surgery my Her2 was no longer showing up-did my chemo get rid of it ? Or did I have two types of cancer? Still unknown-

i did TCHP chemo first , then single mastecomy , then radiation- I was fortunate that my hip area did not cause me pain- now after radiation I do feel some sensations but my rad. Onco says it is my bone "remodeling"-

i am not taking any bone medication just tamoxifen-

on to my hysterectomy next Friday!

Hugs to you and pain-free living!

Bone Mets.....

Susan, I admire you so much....! Seems you've been weathering this bc storm bravely and that helps me to stay positive. Thank you for sharing with us. As far as having a hysterectomy, I'm sure your Oncologist was the one who recommended it.....Did any other oncologists agree with that decision? I think I'd ask more experts about it.....It wouldn't hurt.....But know that I'll be praying for you as you undergo yet "another" procedure to rid yourself of this rotten disease....!

I was somewhat disappointed that my doctors didn't do a bone scan on me before my lumpectomy.....If they had, they would've seen that my bc had already spread...! I was told that a bone scan is only done if the patient complains of bone pain......And I did have that but thought it was arthritis.....! Live and learn....!

I didn't get chemo.....just the lumpectomy and radiation.....Now I'm on the hormone route......I'll be holding my breath at my next doctor's visit to find out if the Faslodex is working or not.....If not, it's on to a chemo pill.......

Oh! Here's a question for you: Have you had any loss of appetite throughout your treatment? That's been a problem for me....It started out as nausea....I took Zofran for that, but now I just don't feel like eating....So I've been prescribed Megace to help in that dept. It helped me a lot two weeks ago but now seems to be wearing off a bit.....I take 1 tablet twice a day......How are your eating habits?? Any secrets as to how to keep my nutrition level up?? I bought some Ensure and will drink one of those off and on. I know I've lost weight but hate to go on the scale to see just exactly how much...!!!

Again, wishing you well as you go through your surgery. I'll definitely be sending positive thoughts and energy your way next week.....!!! Kats2

Kats2 · May 2015

New Flower said:
You are not alone
hi Kats

you are not alone. I also have mets to bones since 2012 and have been doing ok. I undergone various treatment including Faslodex which worked well for me 12 months. Try to keep positive outlook, even cancer is a very awful disease. You can read about my treatments on my personal page. My original was in 2008 included 3 types and lobular as well.

Hugs

Thank you!!

Hello....I just read your personal page and you've been through a lot. I admire your positive outlook and sharing it with us. I'm just so happy that I joined this site and am able to connect with women who also share a similar metastisis as me....to the bones. Cancer sure is a complicated disease....and the treatments are very individual. Somewhere down the line I hope that research will eliminate this disease altogether! In the meantime it's nice to get support from each other.

Have you had many side effects from the medicines, treatments, etc.? That seems to be bogging me down.....especially lack of appetite.....I've been prescribed Megace which I take twice a day....It helps, but my appetite is definitely not the same since my diagnosis in June 2014. Will it ever get back to normal?
I'm trying to stay as normal as possible, but there are times when I'm just too tired to do things I used to do.( even simple things like vacuuming...)....and that gets me down. If I overdo, the bone pain will start up. But we need to keep on living, don't we?

I love you saying to STAY POSITIVE!! That's probably the best advice we cancer survivors can get. I think it's easy to go into depression....which I fear.....I have times when I feel very low....and scared. I live alone and sometimes those obsessive thoughts get to me. I try to get out in the sunshine and do something to get my mind OFF my medical problems.......What things have helped you???

Thanks again for sharing. I appreciate any and all advice people want to give me. You're right....."We're not alone." Bye for now Kats2

P.S. You've been dealing with this bc since 2008.....That's encouraging to all of us. Hope that you're feeling better since your dianosis......I wish you continued progress in the years ahead.....Keep us posted......!

Desmonds1 · May 2015

Kats2 said:
Bone Mets.....
Susan, I admire you so much....! Seems you've been weathering this bc storm bravely and that helps me to stay positive. Thank you for sharing with us. As far as having a hysterectomy, I'm sure your Oncologist was the one who recommended it.....Did any other oncologists agree with that decision? I think I'd ask more experts about it.....It wouldn't hurt.....But know that I'll be praying for you as you undergo yet "another" procedure to rid yourself of this rotten disease....!

I was somewhat disappointed that my doctors didn't do a bone scan on me before my lumpectomy.....If they had, they would've seen that my bc had already spread...! I was told that a bone scan is only done if the patient complains of bone pain......And I did have that but thought it was arthritis.....! Live and learn....!

I didn't get chemo.....just the lumpectomy and radiation.....Now I'm on the hormone route......I'll be holding my breath at my next doctor's visit to find out if the Faslodex is working or not.....If not, it's on to a chemo pill.......

Oh! Here's a question for you: Have you had any loss of appetite throughout your treatment? That's been a problem for me....It started out as nausea....I took Zofran for that, but now I just don't feel like eating....So I've been prescribed Megace to help in that dept. It helped me a lot two weeks ago but now seems to be wearing off a bit.....I take 1 tablet twice a day......How are your eating habits?? Any secrets as to how to keep my nutrition level up?? I bought some Ensure and will drink one of those off and on. I know I've lost weight but hate to go on the scale to see just exactly how much...!!!

Again, wishing you well as you go through your surgery. I'll definitely be sending positive thoughts and energy your way next week.....!!! Kats2

Hi Kats- your positive energy

Hi Kats- your positive energy gives me positive energy!

i have been very fortunate that I have a team of doctors that consult with each other whenever there is an issue to resolve- my local doctor is so optimistic he makes me feel better every time I see him! And my doctors at MGH are stellar!

Dont beat yourself up about not having a bone scan early on- I had one and it did not detect my bone mets!

i will pray that the Falsodex will be effective for you -

i lost my my appetite during chemo and I tried to get nutrients with different shakes/mixes- Whole Foods has some pretty good protein mixes that work well when blended with spinach , fruit and seltzer water-

Ensure can help but be aware of the sugar level-

hugs-Susan

Gm2873 · May 2015

Mets to bones

i have what is called oligio bone met also. It's defined as less than five mets to one area (bone, liver, etc). I also found out that I'm BRCA2+, so I'm ER+, PR+, and Her2+. I'm just a "positive " kind of person, LOL. At first I was going to do a lumpectomy, so had Taxotere, Pertusamab and Herceptin initially to shrink the tumor. Then we got the results back from the genetic testing and that changed our plan. I had a mastectomy a couple of weeks ago, and my ovaries removed. Once I recover from all the surgery, I'll have radiation to my bone met. My onco said I would be on Herceptin indefinitely. I'm also on Zometa.

my main problem has been fatigue. Of course, right now, I'm recovering from quite q bit of surgery, so that plus the Herceptin every three weeks is probably the reason I feel so tired. Oh, and I forgot to mention I'm also on Letrozole (an aromatase inhibitor). I just want to have some energy! Like you, just doing small things around the house wears me out. i think also since I had cancer 20 years ago when I was only 44, I'm comparing myself to how it was before. I only took 3 weeks off last time to recover from mastectomy with reconstruction and then worked through out the entire time I was doing chemo. Of course, I was 20 years younger then too, so it's not a fair comparison, but I do it anyway.

Kats2 · May 2015

Gm2873 said:
Mets to bones
i have what is called oligio bone met also. It's defined as less than five mets to one area (bone, liver, etc). I also found out that I'm BRCA2+, so I'm ER+, PR+, and Her2+. I'm just a "positive " kind of person, LOL. At first I was going to do a lumpectomy, so had Taxotere, Pertusamab and Herceptin initially to shrink the tumor. Then we got the results back from the genetic testing and that changed our plan. I had a mastectomy a couple of weeks ago, and my ovaries removed. Once I recover from all the surgery, I'll have radiation to my bone met. My onco said I would be on Herceptin indefinitely. I'm also on Zometa.

my main problem has been fatigue. Of course, right now, I'm recovering from quite q bit of surgery, so that plus the Herceptin every three weeks is probably the reason I feel so tired. Oh, and I forgot to mention I'm also on Letrozole (an aromatase inhibitor). I just want to have some energy! Like you, just doing small things around the house wears me out. i think also since I had cancer 20 years ago when I was only 44, I'm comparing myself to how it was before. I only took 3 weeks off last time to recover from mastectomy with reconstruction and then worked through out the entire time I was doing chemo. Of course, I was 20 years younger then too, so it's not a fair comparison, but I do it anyway.

Mets to Bones.....

GM2873.....You are a true inspiration to all of us. You've been through quite a lot and you continue on bravely in spite of everything. I was wondering why you needed your ovaries removed seeing as you're probably past menopause......??? You're lucky that genetic testing was able to be done for you.....For me, my primary tumor was just too small to be tested....and they tried twice...! I never got any kind of number......
I hope you're on the mend after the mastectomy and ovary surgery. The fact that you must go in every 3 weeks for Herceptin infusions is quite a lot to deal with. You do get that through an IV, right?

I never heard of Letrozole....I'm going to mention it to my Oncologist when I see him next week. I'm on Faslodex....My last shots will be next week....then we'll see where I go from there. I find that the Zometa helps my bones a lot......I had fractured ribs, and a compression of T-9 in my spine. Seems the pain is lessening, though if I "overdo" with anything physical, then it comes right back...! And yes, even though I haven't gone through as much as you, I DO get fatigued quite often. It's awful. But we must trudge on....we have no choice, do we?

About radiation to your mets......Where exactly will you be radiated? I met with a Radiologist in November of 2014 and he didn't want to get into anything yet with me....He wanted to see how the medications I was on would work first. Then I was told that only a certain specific spot would be radiated......not a large area, like my back, for instance....(I have mets in my thoracic spine AND lumbar spine AND pelvis.......) So, I'm a bit confused about all of this......Let me know where you'll be radiated....I'm curious about this.......

All I can say, is STAY STRONG! You're a brave girl....for sure!! Keep in touch. Wishing you well.....always......God Bless..... Kats2

Kats2 · May 2015

Desmonds1 said:
Hi Kats- your positive energy
Hi Kats- your positive energy gives me positive energy!

i have been very fortunate that I have a team of doctors that consult with each other whenever there is an issue to resolve- my local doctor is so optimistic he makes me feel better every time I see him! And my doctors at MGH are stellar!

Dont beat yourself up about not having a bone scan early on- I had one and it did not detect my bone mets!

i will pray that the Falsodex will be effective for you -

i lost my my appetite during chemo and I tried to get nutrients with different shakes/mixes- Whole Foods has some pretty good protein mixes that work well when blended with spinach , fruit and seltzer water-

Ensure can help but be aware of the sugar level-

hugs-Susan

Appetite...bone scans, etc.

Hi Susan...Thanks for writing.....I'm taking Zofran for my nausea and on again/ off again appetite....Seems that I've been bothered by this since being diagnosed.....way back in June 2014......I don't like it at all because I can't go out to eat with friends very much.....just not hungry.....I DO take Ensure off and on, and try to eat more when the appetite improves a bit.....but it's still a problem....I think my Oncologist is perplexed about it too seeing as I did NOT have chemo.......Perhaps the Faslodex shots, plus the Zometa are doing something to me???...Whatever it is, I definitely DON'T like it...! I've lost over 20 pounds since all this started.......

You're sweet saying that I'm positive.......Thank you. You, on the other hand, are extremely BRAVE!! I'm finding that many women have been through a lot more than me!! We each have our individual challenges......and from what I read, we're all trying our best to deal the hands that we're dealt......I wish everyone out there much courage and to keep up that FIGHTING spirit!!! ......! It can be easy to say...."Poor me....why did this happen to me?"
We can't look back, but must look forward. always forward and be positive that our treatments are the best for us and that we'll come out of this stronger people....and healthy....!

Thank you for telling me about the bone scan....and that perhaps nothing would've shown up on mine even if I had had one before my surgery. That helped me a lot.....I had been ruminating about that whole thing for quite a while....thinking that if only the test were done, then maybe I wouldn't be in the situation I'm in now.....bone mets......I have to let go of those thoughts.....they don't help.

Thanks for keeping in touch! Sometimes we don't know how much we help others until we write and then hear from those who were helped in some way shape or form by what we had to share and say......So, thank you....!!! Kats2

Kats2 · May 2015

New Flower said:
You are not alone
hi Kats

you are not alone. I also have mets to bones since 2012 and have been doing ok. I undergone various treatment including Faslodex which worked well for me 12 months. Try to keep positive outlook, even cancer is a very awful disease. You can read about my treatments on my personal page. My original was in 2008 included 3 types and lobular as well.

Hugs

Bone mets.....

Hello....I was wondering if you're still in a clinical trial? Are you still taking Femar with Faslodex and Xgeva? I want to talk to my Oncologist about this.....He doesn't do clinical trials he told me......How did the radiation go? And what do you take for pain? I'm on Ibuprophen for now. Am curious to know of others bc patients who are dealing with bone mets like me.....Thanks for any input you can give me....

Kats2

New Flower · May 2015

Kats2 said:
Bone mets.....
Hello....I was wondering if you're still in a clinical trial? Are you still taking Femar with Faslodex and Xgeva? I want to talk to my Oncologist about this.....He doesn't do clinical trials he told me......How did the radiation go? And what do you take for pain? I'm on Ibuprophen for now. Am curious to know of others bc patients who are dealing with bone mets like me.....Thanks for any input you can give me....

Kats2

Hi Kats

Hi Kats,

I take Nocro for bone pain, it is prescription and works for me. I aslo use Lidocaine 5% patch as needed. There are other Rx options, Talk to your oncologist and ask for Rx.I am off clinical trial and off Femara and Faslodex as it stopped working for me . I was on faslodex 15 noths and did work well. I did bone radiation twice for different areas/bones. talk to your oncologist about this possibility. It is usually used for pain management and between 10-15 sessions every day.

Stay connected. It helps.

New Flower

Kats2 · May 2015

New Flower said:
Hi Kats
Hi Kats,

I take Nocro for bone pain, it is prescription and works for me. I aslo use Lidocaine 5% patch as needed. There are other Rx options, Talk to your oncologist and ask for Rx.I am off clinical trial and off Femara and Faslodex as it stopped working for me . I was on faslodex 15 noths and did work well. I did bone radiation twice for different areas/bones. talk to your oncologist about this possibility. It is usually used for pain management and between 10-15 sessions every day.

Stay connected. It helps.

New Flower

Bone radiation....

Hi New Flower,

Was wondering if the radiation to your bones helped you. Which bones were radiated? Is the pain gone in those areas ? I think having this done for me is going to be recommended......not sure....I know that my Oncologist seems uptight with anything that involves the spine. Thanks for telling me about Nocro. Never heard of it.....Stay in touch! Kats2

Gm2873 · May 2015

Kats2 said:
Mets to Bones.....
GM2873.....You are a true inspiration to all of us. You've been through quite a lot and you continue on bravely in spite of everything. I was wondering why you needed your ovaries removed seeing as you're probably past menopause......??? You're lucky that genetic testing was able to be done for you.....For me, my primary tumor was just too small to be tested....and they tried twice...! I never got any kind of number......
I hope you're on the mend after the mastectomy and ovary surgery. The fact that you must go in every 3 weeks for Herceptin infusions is quite a lot to deal with. You do get that through an IV, right?

I never heard of Letrozole....I'm going to mention it to my Oncologist when I see him next week. I'm on Faslodex....My last shots will be next week....then we'll see where I go from there. I find that the Zometa helps my bones a lot......I had fractured ribs, and a compression of T-9 in my spine. Seems the pain is lessening, though if I "overdo" with anything physical, then it comes right back...! And yes, even though I haven't gone through as much as you, I DO get fatigued quite often. It's awful. But we must trudge on....we have no choice, do we?

About radiation to your mets......Where exactly will you be radiated? I met with a Radiologist in November of 2014 and he didn't want to get into anything yet with me....He wanted to see how the medications I was on would work first. Then I was told that only a certain specific spot would be radiated......not a large area, like my back, for instance....(I have mets in my thoracic spine AND lumbar spine AND pelvis.......) So, I'm a bit confused about all of this......Let me know where you'll be radiated....I'm curious about this.......

All I can say, is STAY STRONG! You're a brave girl....for sure!! Keep in touch. Wishing you well.....always......God Bless..... Kats2

Mets to bones

Letrozole is the generic for Femara. It's an aromatase inhibitor. I'm on it because my tumors are strongly ER+ and PR+. I'm on Herceptin because my tumors are also Her2+. The BRCA testing is done on blood. I had the ovaries removed because being BRCA+ greatly increases your risk for ovarian cancer and Breast cancer. Since ovarian cancer is so hard to detect, wanted to get those ovaries out in case they decided to go all "cancer" on me. the herceptin is through IV, but I have a port so it's pretty easy. Only side effects are a little nausea on occasion and fatigue. I have an echocardiogram every three months because herceptin can cause coronary heart failure in rare cases. I lost 40 lbs while I was doing taxotere to shrink the Breast tumor. I had severe diarrhea while on that and I totally lost my appetite. my onco decided I had to come off the Taxotere early because it was causing me to loose too much weight. I've been off it since Feb 10 and still haven't gained any weight back even though I am eating better now. I don't have the appetite I once did, but I'm still recovering from the surgery (in fact, still have a drain), so I haven't been as active. I'm thinking once I get more active, my appetite will increase. I really wouldn't mind not gaining the weight back. The less I weigh, I figure the less my bones will hurt, and the Letrozole does cause joint pain.

They want to radiate my left sacrum where my bone met is. My oncologist thinks maybe the radiation oncologist may want to radiate the chest wall, but my Breast surgeon says he's not sure that needs to be done. I will just wait and talk to the radiation oncologist and listen to her recommendation. I haven't been released by my Breast surgeon for radiation yet. Need to heal awhile longer from the surgery. I figure my radiation will start sometime in June.

As soon as I get through all the radiation I plan to start water aerobics (as soon as I'm released to do that). All the research I've done says that moderate exercise will help with the joint pain that the letrozole is causing. My husband says he will go do it with me, so that should make it fun and help me stick with it.

glad you found us...we sista's have to stick together and help each other

Kats2 · May 2015

Gm2873 said:
Mets to bones
Letrozole is the generic for Femara. It's an aromatase inhibitor. I'm on it because my tumors are strongly ER+ and PR+. I'm on Herceptin because my tumors are also Her2+. The BRCA testing is done on blood. I had the ovaries removed because being BRCA+ greatly increases your risk for ovarian cancer and Breast cancer. Since ovarian cancer is so hard to detect, wanted to get those ovaries out in case they decided to go all "cancer" on me. the herceptin is through IV, but I have a port so it's pretty easy. Only side effects are a little nausea on occasion and fatigue. I have an echocardiogram every three months because herceptin can cause coronary heart failure in rare cases. I lost 40 lbs while I was doing taxotere to shrink the Breast tumor. I had severe diarrhea while on that and I totally lost my appetite. my onco decided I had to come off the Taxotere early because it was causing me to loose too much weight. I've been off it since Feb 10 and still haven't gained any weight back even though I am eating better now. I don't have the appetite I once did, but I'm still recovering from the surgery (in fact, still have a drain), so I haven't been as active. I'm thinking once I get more active, my appetite will increase. I really wouldn't mind not gaining the weight back. The less I weigh, I figure the less my bones will hurt, and the Letrozole does cause joint pain.

They want to radiate my left sacrum where my bone met is. My oncologist thinks maybe the radiation oncologist may want to radiate the chest wall, but my Breast surgeon says he's not sure that needs to be done. I will just wait and talk to the radiation oncologist and listen to her recommendation. I haven't been released by my Breast surgeon for radiation yet. Need to heal awhile longer from the surgery. I figure my radiation will start sometime in June.

As soon as I get through all the radiation I plan to start water aerobics (as soon as I'm released to do that). All the research I've done says that moderate exercise will help with the joint pain that the letrozole is causing. My husband says he will go do it with me, so that should make it fun and help me stick with it.

glad you found us...we sista's have to stick together and help each other

Lots of good info!

Gm2873......Thanks so much for all the great info you provided. It's amazing what you've been through and are still going through. Your strong nature will get you through, I'm sure of it.!
I was surprised to read that your bc came back after 20 years......Wow. My sister is 14 years cancer free of her Stage 1 DCIS. She'll be interested in hearing about you. The crazy thing is that she's older than me and was NOT going for yearly mammograms even though our mother had DCIS diagnosed when she was 70. So I was on my sister's case while all along going religiously for MY yearly mammos......And who should end up with a worse cancer??? ME!!!!!

I understand a lot more about bc and the medicines, etc. because of your post. I'm glad that you'll be going to the Y and swimming with your husband. I think that'll do you a world of good and it's planted a seed in me to do the same. I haven't done very much physically......just trying to go for short walks and trying to keep up with housework...and recently planting flowers outside which has pretty much exhausted me....!

I too have lost a lot of weight......am trying to gain some of it back but it's hard to do.....Thank God I was a bit on the overweight side to begin with and could afford to lose some pounds.........but now I want to gain....I don't want to look too scrawny, plus I don't have lots of energy when my weight is down.....It's out of my hands though.

Again, please keep posting because I think you're helping an awful lot of women by telling your story.....I've learned so much since joining this site...........My best wishes for your continued successful treatments and that you'll get rejuvenated with your swimming escapades.........!!! We need to fight the good fight!!! Best wishes, Kats2

duck1255 · May 2015

Bone mets

Like everyone else I also have bone mets. I have been taking Femara for almost a year and have been lucky to not have bad side effects just some stiffness in joints after sitting for awhile. I recently have added the new approve drug Ibrance that is taken along with Femara. So far the only SE has been low white blood counts which is a major SE of this drug. I have been stable on Femara alone so let's hope the Ibrance makes it last longer

Metastisis to bones

Comments

Discussion Boards