1. < Breast Cancer

Is it just me, or do others suffer with no help too?

Posted by blondin925 @blondin925, Dec 6 12:22am

I have completed 5yrs of exemestane tx and have been in pain everyday from it for almost the whole time. Why are Oncologist denying that I am in pain from my treatment, and denying that it can cause very severe neuropathy pain for a small number of people who had the therapy. Is there anyone else out there living with this severe pain like me? I want to cut my legs off daily. Please share your pain. Maybe a doctor somewhere out there might give a crap for once and step out of denial. This is not a figment of my imagination, and it certainly isn't arthritis. I hope all the Oncologist that deny this is happening to patients end up with having to go through this treatment themselves some day and I hope their pain is 10x's worse than my pain scale of 10 that I am living with daily. Oh wait... "it's a figment of my imagination." Never mind.... Idiots!!!!

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harmer | @harmer | Dec 9 11:28am
In reply to @brightside21 "I've had exactly the same issues. But It was acknowledged that Femara is the cause. Asking..." + (show)
@brightside21

I've had exactly the same issues. But It was acknowledged that Femara is the cause.
Asking for help I was dismissed & told its my choice take them or risk recurrance if I don't.
Its the usual answer from all the oncologists. I was told by 3 oncologist "I can NOT advise you stopping AIs."
I've asked repeatedly what can be done to stop or reverse the imense femur bone pain in both legs that's being caused by Femara (Letrozole) & what are my alternatives to stopping..Can they stop.my deuteriation.? I'm.on high dose calcuim & vit d already. They seem unconcerned with my pain saying take MST morphine !! .

One oncologist in London uk
said try Tamoxifen 5mg or 10mg ( as its known to be less invasive on bones & pain)
20mg is the standard daily dose
Another oncologist said at a uk.hospital we do not prescribe low doses at our hospital.its unrecognised.
Another said just STOP all AIs & take the risk & enjoy a better quality of life.
Basically oncology do not have a medication that does not cause joint pain, bone pain & muscle pain so those of us who suffer this it's a total nightmare.
Like you I've seen orthopedic consultants as well as rhematogy consultants. Both confirmed my arthritus & fibromyagia is NOT causing this bone density loss& pain & both confirmed it's definately the AIs.
I've tried Tamoxifen
Anastrrzole, Examastane Letrozole & Anastrazole. All gave me severe pain issues.
We need a new medication & more research asap.

Jump to this post

I have chosen to stop all AI drugs.
I began with Letrozole, switched to Exemestane and then Tamoxifen.
I experienced pain with all and after reading of the ongoing side effects of these drugs I have chosen quality over quantity of life.
So far 2 years out.

REPLY
sue417 | @sue417 | 3 days ago
In reply to @melissab23 "I have been in pain daily since surgery over a year ago. I feel like a..." + (show)
@melissab23

I have been in pain daily since surgery over a year ago. I feel like a hot potato with docs passing me off to the next guy because no one wants to or is capable of helping me. And the palliative care docs were only interested in getting me started on mental health drugs, not trying to find the root of the pain. I'm not even 50 yet.

Plus, my oncologist is making me switch from Tamoxifen to an AI because my lab work shows I'm post-menopausal now. (He refused to retest hormone levels after taking a 2 week tamoxifen break).
I'm so scared of the side effects of bone loss, muscle, and joint pain (among others). He chose anastrazole because it's the oldest one, but said he'd prescribe any of the 3. I have to let him know in 4 days.

Jump to this post

Hi
Have you ever thought you have a right not to take it. I did not take those drugs. I gave tamoxifen a try for 2 weeks. It was horrid. I did my own research and I called my oncology radiologist to discuss with him and and he agreed. You do
have a right you know to say NO. I hope you find peace with the choice you make.

REPLY
2 replies
aej1954 | @aej1954 | 2 days ago

I have suffered for three tears and have decided to stop the Temoxifan. I pray I have made the right decision. I am turning 70 this month and feeling good is important. My oncologist wanted me to stay on it five years. Good luck to you!!

REPLY
kimogi57 | @kimogi57 | 1 day ago

I had horrible pain that was from exemestane and Anestrozole. Much worse with exemestane. I quit taking all after a year and I'm almost back to normal. Every step up my stairs at home hurt LH and I had to hug the handrail. Walking just a few minutes and my hips hurt LH. Like He'll. It's a real thing. My fingers still hurt at times and on my rt hand, and it feels like they don't want to open when I make a fist. My personality also changed. I.was so mean and angry.

REPLY
1 reply
kimogi57 | @kimogi57 | 1 day ago
In reply to @sue417 "Hi Have you ever thought you have a right not to take it. I did not..." + (show)
@sue417

Hi
Have you ever thought you have a right not to take it. I did not take those drugs. I gave tamoxifen a try for 2 weeks. It was horrid. I did my own research and I called my oncology radiologist to discuss with him and and he agreed. You do
have a right you know to say NO. I hope you find peace with the choice you make.

Jump to this post

We do have a right to say no, but if we say no we have a fear of another cancer. That's where I am right now. I feel so much better physically and mentally, and just hope one day I'm not kicking myself for stopping AI's

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1 reply
sue417 | @sue417 | 1 day ago
In reply to @kimogi57 "We do have a right to say no, but if we say no we have a..." + (show)
@kimogi57

We do have a right to say no, but if we say no we have a fear of another cancer. That's where I am right now. I feel so much better physically and mentally, and just hope one day I'm not kicking myself for stopping AI's

Jump to this post

Hi
I know I wrestled with the decision also. But my gut was telling me loudly NO. I have always done alternative therapies .I started doing ionic foot cleanse today because of all the drugs and radiation. My water is black which indicates heavy metals. Doing them until it's clear. There are other modalities to help our bodies.

REPLY
1 reply
kimogi57 | @kimogi57 | 1 day ago
In reply to @sue417 "Hi I know I wrestled with the decision also. But my gut was telling me loudly..." + (show)
@sue417

Hi
I know I wrestled with the decision also. But my gut was telling me loudly NO. I have always done alternative therapies .I started doing ionic foot cleanse today because of all the drugs and radiation. My water is black which indicates heavy metals. Doing them until it's clear. There are other modalities to help our bodies.

Jump to this post

I've never heard of this. Thank you for the information. I'll do some research!

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lifetraveler | @lifetraveler | 14 hours ago
In reply to @kimogi57 "I had horrible pain that was from exemestane and Anestrozole. Much worse with exemestane. I quit..." + (show)
@kimogi57

I had horrible pain that was from exemestane and Anestrozole. Much worse with exemestane. I quit taking all after a year and I'm almost back to normal. Every step up my stairs at home hurt LH and I had to hug the handrail. Walking just a few minutes and my hips hurt LH. Like He'll. It's a real thing. My fingers still hurt at times and on my rt hand, and it feels like they don't want to open when I make a fist. My personality also changed. I.was so mean and angry.

Jump to this post

Hi! @kimogi57:

I feel your pain, for "hurting LH" is very real because I experienced similar aches and pains from taking AIs also...

I started taking Anastrozole on 1/18/24; experienced loads of awful side effects such as: joints pain, trigger fingers, muscle pain all over my body, etc., almost immediately after taking this AI medicine. Due to the fact that I declined the radiation treatments (for fear of its potential long-term side-effects) against my oncologists' recommendation, I decided to tough it out and continue taking Anastrozole because my cancerous cells are ER95%+, PR+, and Her2-, and taking any AIs is the only avenue for me to keep those BC cancerous cells from popping out anywhere in my body:(. Fortunately for me, my kind-hearted PCP recommended PT/OT (physical therapy/occupational therapy) to strengthen my weakened muscles, bones, & aching joints and gradually keep my fingers moving daily.

Sorry for such a lengthy note, Kimogi; but I wish to share with you my own personal experience to show there's hope to mitigate pain under any circumstances. Please bring up all your side-effects and discuss with your physicians again to see if they'd recommend any viable solutions for you.

Best wishes to you all for the new year!

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LisaY1 | @lisay1 | 8 hours ago

We do hear you! I feel that Doctors don't always have the fix so they make it seem like it's just you with a problem. Anyone who has gone through cancer can and will relate to you. You are not alone! Stay strong! Sending you gentle hugs 🙂

REPLY
LisaY1 | @lisay1 | 8 hours ago
In reply to @sue417 "Hi Have you ever thought you have a right not to take it. I did not..." + (show)
@sue417

Hi
Have you ever thought you have a right not to take it. I did not take those drugs. I gave tamoxifen a try for 2 weeks. It was horrid. I did my own research and I called my oncology radiologist to discuss with him and and he agreed. You do
have a right you know to say NO. I hope you find peace with the choice you make.

Jump to this post

It's a scary decision. I have Rheumatoid Arthritis which is very painful. I could take an injectable which I did for years. Now I'm worried about reoccuring cancer and do nothing to help with the Rheumatoid Arthritis. My surgeon said it's about the quality of life decision. I'm not trying to fight the RA but not so sure .......... I want to fight cancer again

REPLY
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