Eight years later...

SHERRRY

Hi everyone. I am eight years out of having
breast cancer and I had all the things that go
with it.. Chemo, radiation, etc.. I am now really suffering
with osteoporosis, osteoarthritis and all the symtoms of fibromyalgia..
not to mention I have had insomnia since as well..
Is this common? Has anyone else suffered with these things?
Thanks, Sherry

lynn1950

4 years later
Hi Sherry. Congratulations on 8 years! I am 4 years out. Sorry to hear about the osteoporosis, arthritis and symptoms of fibromyalgia. It sounds like you are in pain.

Following my last chemo and rads, I met with a social worker. My cancer center had just instituted an aftercare program. She went over all of the possible side effects that might result from the treatments. I have to say that the meeting and its information is a blur. But, perhaps if your cancer care center provides this service, you could get some answers to your questions there.

I take Boniva because after chemo I developed osteopenia. Did you take Arimidex? I too have arthritis, and I blame some of my joint pain on the Arimidex. My greatest problem is depression - can't seem to shake it. I function with the help of antidepressants. I am hoping that the depression is triggered by the Arimidex and that it will subside after I'm finished with the Arimidex regimen.

Best wishes for relief to you. xoxoxo Lynn

SHERRRY

lynn1950 said:

4 years later
Hi Sherry. Congratulations on 8 years! I am 4 years out. Sorry to hear about the osteoporosis, arthritis and symptoms of fibromyalgia. It sounds like you are in pain.

Following my last chemo and rads, I met with a social worker. My cancer center had just instituted an aftercare program. She went over all of the possible side effects that might result from the treatments. I have to say that the meeting and its information is a blur. But, perhaps if your cancer care center provides this service, you could get some answers to your questions there.

I take Boniva because after chemo I developed osteopenia. Did you take Arimidex? I too have arthritis, and I blame some of my joint pain on the Arimidex. My greatest problem is depression - can't seem to shake it. I function with the help of antidepressants. I am hoping that the depression is triggered by the Arimidex and that it will subside after I'm finished with the Arimidex regimen.

Best wishes for relief to you. xoxoxo Lynn

Hi Lynn, thanks for your
Hi Lynn, thanks for your reply. I was on Arimidex but I couldn't cope with the leg pain. Were do you live? I would guess the States.. our cancer clinic here in Canada did not supply with with an aftercare program but it is something to look into..Thanks

New Flower

SHERRRY said:

Hi Lynn, thanks for your
Hi Lynn, thanks for your reply. I was on Arimidex but I couldn't cope with the leg pain. Were do you live? I would guess the States.. our cancer clinic here in Canada did not supply with with an aftercare program but it is something to look into..Thanks

Hi Sherry
Congratulations on your 8 years of survivorship. It is a great accomplishment considering very difficult treatment and anti-estrogen therapy. I also was on Arimidex and have osteoporosis which we treat with various medications. I have had insomnia which I treated by combination of medications and alternatives, including acupuncture, herd, and meditation.
Best of luck to you
New Flower

madsters1

SHERRRY said:

Hi Lynn, thanks for your
Hi Lynn, thanks for your reply. I was on Arimidex but I couldn't cope with the leg pain. Were do you live? I would guess the States.. our cancer clinic here in Canada did not supply with with an aftercare program but it is something to look into..Thanks

Arimidex
Hi Sherrry, I saw that you stopped the Arimidex. Would you mind telling me if that was only due to joint pain or did you have other intolerable SE's? Also, how long were you on it before stopping and did you replave it with another med? I'm discussing this med with my onc on Friday Thx for sharing

SHERRRY

madsters1 said:

Arimidex
Hi Sherrry, I saw that you stopped the Arimidex. Would you mind telling me if that was only due to joint pain or did you have other intolerable SE's? Also, how long were you on it before stopping and did you replave it with another med? I'm discussing this med with my onc on Friday Thx for sharing

I thought I had responded to
I thought I had responded to this note.. sorry if I hadn't.. yes, I stopped it because I could barely climb the stair. I had unbareable leg and joint pain.

Alexis F

New Flower said:

Hi Sherry
Congratulations on your 8 years of survivorship. It is a great accomplishment considering very difficult treatment and anti-estrogen therapy. I also was on Arimidex and have osteoporosis which we treat with various medications. I have had insomnia which I treated by combination of medications and alternatives, including acupuncture, herd, and meditation.
Best of luck to you
New Flower

Congrats Sherry on the 8
Congrats Sherry on the 8 years! I am very sorry that you are having these health issues. Maybe once you stop your hormone therapy, they will subside.


Hugs, Lex

3cbrca

SHERRRY said:

I thought I had responded to
I thought I had responded to this note.. sorry if I hadn't.. yes, I stopped it because I could barely climb the stair. I had unbareable leg and joint pain.

Hi Sherry
I'm so sorry
Hi Sherry

I'm so sorry you're in so much pain- sometimes the choices they give of us seem to be bad or worse. I have been willing to do about anything to survive but sometimes I had to make a choice.

I took Aromasin for almost four years and switched to Femara for awhile but had to quit. My docs want me to continue because of my high risk status but couldn't do it. (there are clinical trials proposed to test AIs for up to 10 years, but I don't know who they're going to get to participate- it can be brutal). I've had arthritis since my 30s and thought I could take it but had to scream "Uncle". For me it was a quality of life issue. I quit about a year ago and I'm just getting back to regular sleep patterns and my personality is returning. I still have arthritis, but the pain is manageable and chemo induced osteopenia, but there is no better drug than exercise. I just couldn't do as much exercise when I was taking AIs. I'm now up to a regular 4 times a week.

I'm not advocating that women stop taking their Aromatase Inhibitor-they are fabulous new drugs that I credit with my survival. But I had to make a choice and it took me a year to quit feeling bad about it and to start felling like my old self. You're not alone!



Hope this

Kristin N

madsters1 said:

Arimidex
Hi Sherrry, I saw that you stopped the Arimidex. Would you mind telling me if that was only due to joint pain or did you have other intolerable SE's? Also, how long were you on it before stopping and did you replave it with another med? I'm discussing this med with my onc on Friday Thx for sharing

I am sorry Sherry. Perhaps
I am sorry Sherry. Perhaps if you took a break, you might see if it is the A.

jonahrex98

FIBROMYALGIA AND CHEMO-INDUCED PHERIPHERAL NEUROPATHY
I am a ten-year survivor, and I am plagued with what I think is chemo-induced peripheral neuropathy which is similar to the fibromyalgia symptoms. How do you know for sure if it's fibromyalgia? The reason I'm asking is that I am trying to get this diagnosed, and I may have the same things you have instead.

NancyJac

jonahrex98 said:

FIBROMYALGIA AND CHEMO-INDUCED PHERIPHERAL NEUROPATHY
I am a ten-year survivor, and I am plagued with what I think is chemo-induced peripheral neuropathy which is similar to the fibromyalgia symptoms. How do you know for sure if it's fibromyalgia? The reason I'm asking is that I am trying to get this diagnosed, and I may have the same things you have instead.

From what I understand,
From what I understand, fibromyalgia and peripheral neuropathy are more like opposites than they are similar. The current thinking is that fibromyalgia is the result of over active neural activity cause pain that has not organic cause. Peripheral neuropathy occurs when a nerve or nerves are damaged and don't work properly resulting in numbness and a curtailed ability to feel pain in the affected areas. That is why those with peripheral neuropathy are cautioned to be extra careful or heat and cold, sharp instruments, etc. because they might not feel that warning pain that is associated with it.

jonahrex98

NancyJac said:

From what I understand,
From what I understand, fibromyalgia and peripheral neuropathy are more like opposites than they are similar. The current thinking is that fibromyalgia is the result of over active neural activity cause pain that has not organic cause. Peripheral neuropathy occurs when a nerve or nerves are damaged and don't work properly resulting in numbness and a curtailed ability to feel pain in the affected areas. That is why those with peripheral neuropathy are cautioned to be extra careful or heat and cold, sharp instruments, etc. because they might not feel that warning pain that is associated with it.

CHEMO-INDUCED PHERIPHERAL NEUROPATHY
I definitely have this from everything I've experienced and read. I know it seems like nothing when living or dying is the only thing that matters, but I have dealt with this for ten years, and I am very frustrated at this point. I just want to be normal again. I feel like all of the many doctors I have seen do not think it's from chemo. All their tests are negative. I can't believe how clueless they are. I just wondered if the chance of getting it diagnosed would be better if there was a similar condition to compare it with.

NancyJac

jonahrex98 said:

CHEMO-INDUCED PHERIPHERAL NEUROPATHY
I definitely have this from everything I've experienced and read. I know it seems like nothing when living or dying is the only thing that matters, but I have dealt with this for ten years, and I am very frustrated at this point. I just want to be normal again. I feel like all of the many doctors I have seen do not think it's from chemo. All their tests are negative. I can't believe how clueless they are. I just wondered if the chance of getting it diagnosed would be better if there was a similar condition to compare it with.

Peripheral neuropathy can
Peripheral neuropathy can have a number of different causes. Whether it was the result of chemo or not probably doesn't matter after 10 years. Unless it is being caused by some other condition that needs to be resolved or better managed (e.g. alcoholism, diabetes, etc.) the treatment options are the same regardless of the original cause. Sometimes the nerve damage just isn't repairable and the only course of action is to manage it as best you can with exercise, medications, and compensation.

NancyJac

jonahrex98 said:

CHEMO-INDUCED PHERIPHERAL NEUROPATHY
I definitely have this from everything I've experienced and read. I know it seems like nothing when living or dying is the only thing that matters, but I have dealt with this for ten years, and I am very frustrated at this point. I just want to be normal again. I feel like all of the many doctors I have seen do not think it's from chemo. All their tests are negative. I can't believe how clueless they are. I just wondered if the chance of getting it diagnosed would be better if there was a similar condition to compare it with.

sorry this one posted twice
*

MAJW

NancyJac said:

Peripheral neuropathy can
Peripheral neuropathy can have a number of different causes. Whether it was the result of chemo or not probably doesn't matter after 10 years. Unless it is being caused by some other condition that needs to be resolved or better managed (e.g. alcoholism, diabetes, etc.) the treatment options are the same regardless of the original cause. Sometimes the nerve damage just isn't repairable and the only course of action is to manage it as best you can with exercise, medications, and compensation.

Have to disagree...
I have to disagree on the comment that neuropathy doesn't cause pain.......I had severe neuropathy in my beasts due to radiation....long story...I was in agony at times with it..like my beasts were on fire, tingling, etc...was prescribed Gabapentin when my oncologist determined it was neuropathy...changed my life..it's different from the neuropathy in my left foot...no pain, just numbness....

jonahrex98

MAJW said:

Have to disagree...
I have to disagree on the comment that neuropathy doesn't cause pain.......I had severe neuropathy in my beasts due to radiation....long story...I was in agony at times with it..like my beasts were on fire, tingling, etc...was prescribed Gabapentin when my oncologist determined it was neuropathy...changed my life..it's different from the neuropathy in my left foot...no pain, just numbness....

CHEMO-INDUCED PERIPHERAL NEUROPATHY
MAJW,

Your experience sounds very different from what I have, but I appreciate your sharing. I have Peripheral Neuropathy which effects your limbs. Mine is not painful,but I've read that some are. My limbs are just virtually useless which really takes its toll when you're supposed to be a vital young wife and mother. I've tried fooling everyone for about ten years since chemo, but it's not working anymore. My clumsiness is too noticeable. The doctors need to do something! They should know about this, but don't have a clue. I'm expected to work for the next 12 years so I can get my full pension, and help send my two teenagers to college.

one_happy_island

10 years out and have terribly painful CIPN in BLE. It has been diagnosed by showing with MRI that it is not spine related, the nerve conduction study showed how bad it is and other causes like diabetes has been ruled out. It is like my feet and lower legs are on fire with needles and broken glass being forced into the areas...but I have to put socks on because it goes from fire to ice; "feeling cold" like I'm standing on ice but my feet don't actually feel cold to the touch.

Sensations are hightened unlike diabetic neuropathy. Sharp, stabbing pain esp. while standing still for 30 minutes or more. (somehow walking is much better than standing)

I began falling about 2X a year after chemo. (was strong and athletic prior to chemo). I didn't relate it to my neuropathy until the injuries from my falls became more and more severe over the 10 years. I have been to a lot of PT for balance and work out with a trainer now for strength and balance. I no longer can hike on trails like I used to. The pain is a constant level of 3 (which I can tolerate) but when I stand on my feet, it shoots up to a 7 or sometimes 8. Sometimes the pain rises with no appreciable cause. It can wake me from my sleep.

I am looking for other women who have had this lingering (now considered life-long) painful neuropathy. I need to know I am not the only one. TYIA

Sadiej

Trust me one_happy_island, you are not the only one. Ten years ago I was given chemo/surgery/radiation. My rheumatologist has already told me I have chemo induced peripheral neuropathy, fibromyalgia and rheumatoid arthritis. I also think my other problems are chemo induced. My Neurologist told me that the peripheral neuropathy will advance first in my legs, then my hands and finally my eyes. (Great 😑). He said because my neuropathy has taken away any feeling in my feet that my brain can't process space/ground differences. (which explains why I walk like a drunk sometimes and also sometimes fall). He recommended my getting a walking stick so my brain will learn to process it through my hands.

Yes, I AM in a lot of pain. I have different meds I take for this but sometimes it's just not enough. I also take Kratom (green, found in CBD stores) for my fibromyalgia. It's the only thing I found that calms the pain and the "kicking".

Just wanted to let you know you're not alone.

one_happy_island

Sadiej, thanks for sharing! Kratom 🤮 Can't find a way to cover that nasty taste. I had an Spine MRI to rule out spinal cause and I don't have diabetes and it started after chemo....so with the Nerve Conduction Study showing nerve damage...my neurologist confirmed a diagnosis of CIPN.

I like the walking stick idea! For now I am just extremely careful when walking.

Wishing you well,

Kate

Sadiej

https://csn.cancer.org/discussion/comment/1706339#Comment_1706339

Hi one_happy_island (Kate)

I don't take the powder form of Kratom (yuk!), I get the pills. I take two green Kratom pills to calm things down but everybody is different. I'm sorry you developed CIPN. Chemo is nasty stuff, for sure.

Hoping things will get better for you,

Sadiej (Pat)