1. < Breast Cancer

A Forever Journey

Posted by ksue3 @ksue3, Apr 24 11:57am

Dec., 2023 screening mammogram discovered a mass. Diagnostic mams, biopsy, surgery, chemo. I am almost 85, a young 85 according to all of my Dr.'s. Was told I had a young woman's cancer. Had Covid about 4-5 weeks after my last chemo. Set me way back. Started Anastrazole but stopped because of trigger thumbs and persistent loose stools. On Exemestane now and hands better. I have a lot of fatigue and have been tearful a lot. Irritable. Hair thinning out after it came in so full after chemo. GI symptoms persist so will have colonoscopy in a month. Oh, yea! I don't tolerate any antidepressants so trying to handle this on my own. I did reach out to a counselor. Haven't heard back yet. I just need to talk and have someone listen and understand my thoughts and feelings about this whole thing. External stressors too with loss of family members and friends. A lot to deal with at one time. Lots of Dr. visits and followups. The anxiety for cancer patients is very common. We try to live our life as normally as possible but those check ups make us face it again. I have several Dr.'s who are all trying to get me up and going full speed again. I hope it is soon. Anyone else out there with the GI stuff and the ongoing fatigue? Would love to hear from you.

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mistymar | @mistymar | Apr 25 1:03pm

I’m 72 (73 next month) diagnosed April 23. Been through surgery, chemo (oncotype +), radiation. Was 8 months this on Anastrazole and changed to Exemestane last November because of side effects. Currently, I am constantly tired - will fall asleep in the middle of doing something middle of the day, some discomfort but not outright pain and some weakness. I think it’s due to the medication exacerbating the effects from the chemo and radiation. I also am loosing hair that grew back after chemo. Also very emotional and some days just sit and cry. Also gaining weight even though nothing else changed - started when I started 3rd month of exemestane. So a lot of what you have going on. Getting another dexa scan next month and I know he’s going to push bone meds (no osteoporosis yet but did have mild osteopenia in left hip) and concerned the side effects of that added to all this will make me incapacitated. I do mention the extreme fatigue (he actually mentioned at last visit that I “looked tired”) but all I get from both onco and PCP is that I must be depressed and should get therapy and go on medication (again, more of the same side effects). GI for me is minimal - bouts of nausea that pass quickly so guess I’m lucky there. And you’re right, still ever 3 months for doctors and bloodwork means I still plan life around this - there is no normal. Don’t know that I can help other than to say you’re not alone.

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1 reply
reflector75 | @reflector75 | Apr 26 8:25am

Similar experiences. I do feel not enough effort is put into more fully briefing on the wide ranging effects some of the AIs have for some people prior to start of treatment. This can lead to people thinking they are deficient in some way in the face of these side effects. We aren’t!!! I’m currently part of a research study ( Roseta) in UK looking at helping boost compliance with medication regimes do AIs. I’m making sure I feed back that more candour at the commencement of treatment is also a key ingredient here. Wishing you well and keep going - these meds are our servants - I refuse to be their victim.

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1 reply
Mentor
Miriam, Volunteer Mentor | @mir123 | Apr 26 8:58am
In reply to @reflector75 "Similar experiences. I do feel not enough effort is put into more fully briefing on the..." + (show)
@reflector75

Similar experiences. I do feel not enough effort is put into more fully briefing on the wide ranging effects some of the AIs have for some people prior to start of treatment. This can lead to people thinking they are deficient in some way in the face of these side effects. We aren’t!!! I’m currently part of a research study ( Roseta) in UK looking at helping boost compliance with medication regimes do AIs. I’m making sure I feed back that more candour at the commencement of treatment is also a key ingredient here. Wishing you well and keep going - these meds are our servants - I refuse to be their victim.

Jump to this post

So interesting--glad to hear of the study. Thank you!

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myoga | @myoga | Apr 26 10:58pm

I’m taking vitamin D along with AI. I hope it helps prevent osteoporosis as I still have 3 years to go on AI. I read that vit D also helps increasing the production of serotonin, the hormone that makes you feel good.

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ksue3 | @ksue3 | Apr 27 3:13pm

I was told that at my age, 84, that I wouldn't have many side effects other than some hand stiffness and aches and pains along with hair thinning. I think it might be that Dr.'s don't want to put pretreatment thoughts in our minds to imagine things. Some people do cruise through without any symptoms of side effects. I know of a couple. Wonder why or how. At my last visit the oncologist asked if I thought I could stay the course of treatment. I told her yes, as of that moment on that day. I am trying, but will see how severe these side effects turn out to be. I am on Exemestane now for 4 months. Had to stop the Anastrozole after 3 months.

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1 reply
reflector75 | @reflector75 | Apr 28 8:05am
In reply to @ksue3 "I was told that at my age, 84, that I wouldn't have many side effects other..." + (show)
@ksue3

I was told that at my age, 84, that I wouldn't have many side effects other than some hand stiffness and aches and pains along with hair thinning. I think it might be that Dr.'s don't want to put pretreatment thoughts in our minds to imagine things. Some people do cruise through without any symptoms of side effects. I know of a couple. Wonder why or how. At my last visit the oncologist asked if I thought I could stay the course of treatment. I told her yes, as of that moment on that day. I am trying, but will see how severe these side effects turn out to be. I am on Exemestane now for 4 months. Had to stop the Anastrozole after 3 months.

Jump to this post

Yes I can understand ( as a retired nurse)why they don’t want to discourage compliance or create suggestiveness about possible side effects - but still feel a fuller discussion of possible effects is often overlooked.

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1 reply
flygirl747 | @flygirl747 | Apr 29 10:44am
In reply to @mistymar "I’m 72 (73 next month) diagnosed April 23. Been through surgery, chemo (oncotype +), radiation. Was..." + (show)
@mistymar

I’m 72 (73 next month) diagnosed April 23. Been through surgery, chemo (oncotype +), radiation. Was 8 months this on Anastrazole and changed to Exemestane last November because of side effects. Currently, I am constantly tired - will fall asleep in the middle of doing something middle of the day, some discomfort but not outright pain and some weakness. I think it’s due to the medication exacerbating the effects from the chemo and radiation. I also am loosing hair that grew back after chemo. Also very emotional and some days just sit and cry. Also gaining weight even though nothing else changed - started when I started 3rd month of exemestane. So a lot of what you have going on. Getting another dexa scan next month and I know he’s going to push bone meds (no osteoporosis yet but did have mild osteopenia in left hip) and concerned the side effects of that added to all this will make me incapacitated. I do mention the extreme fatigue (he actually mentioned at last visit that I “looked tired”) but all I get from both onco and PCP is that I must be depressed and should get therapy and go on medication (again, more of the same side effects). GI for me is minimal - bouts of nausea that pass quickly so guess I’m lucky there. And you’re right, still ever 3 months for doctors and bloodwork means I still plan life around this - there is no normal. Don’t know that I can help other than to say you’re not alone.

Jump to this post

Look at how Japan treats bone meds! The Japanese women have been treated with K2, D3, and calcium vitamins. I would ask about this treatment since 1995, as bone meds have so many side effects.

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ksue3 | @ksue3 | May 2 2:34pm
In reply to @reflector75 "Yes I can understand ( as a retired nurse)why they don’t want to discourage compliance or..." + (show)
@reflector75

Yes I can understand ( as a retired nurse)why they don’t want to discourage compliance or create suggestiveness about possible side effects - but still feel a fuller discussion of possible effects is often overlooked.

Jump to this post

I agree completely and I am a retired nurse.

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minkky | @minkky | May 3 10:39am

I'm on letrozole. Started March 3, 2025. I have had some instances that may be side-effects. I wonder if I'm being hyper sensitive to any pain I feel. I'm 64. I didn't have to have chemo. My onco score was 6. Genetic testing all negative. I did do 30 rounds of radiation. I developed a dry cough during radiation. My husband and I both got a bad upper respiratory virus and we're just over that about 2 weeks. We were both sick and fatigued for 2 weeks. I'm still coughing some. Using an inhaler occasionally that was prescribed for that virus. I started feeling aches in my hands at night and hot flashes at random times. I'm stiff and sore in the morning but I experienced that before. If I walk a lot my feet and hips ache. Again, not exactly new. I'm afraid these things will get worse on the letrozole. I am taking vitamin D3, K2, calcium, and magnesium. All recommended by oncology nurse practitioner. I'm supposed to take this for 10 years. Anyone able to go 10 years? It seems everyone I've read about switches to different drugs or stops all together.

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