depressed about side effects/want to hear from others

ohilly
ohilly Member Posts: 441
edited March 2014 in Breast Cancer #1
I know this is whining, but please indulge me my pity party for a few minutes: I was diagnosed with stage I bc in 2008, but because I am BRCA 1, I had a double (preventive on one side/for cancer on the other) mastectomy. I tried to do everything I could to prevent the cancer coming back, so I enrolled in a clinical trial for Zometa (Zometa is supposed to reduce bc recurrence). Unfortunately, as I wrote in another post, I recently developed Osteonecrosis of the Jaw from the Zometa and have stopped taking it for this reason. At this point, my ONJ does not cause me any pain and was caught early, but I am still afraid it could spread.

But this is not all about ONJ. I am getting sick of having to take so many medications, most of which are to treat side effects. Before cancer, I was the sort of person who never, ever took medication, even an aspirin. I had lovely thick hair and it took me 5 minutes to take a shower, wash my hair, and get out of the shower. Now my morning routine takes me 45 minutes at least: I take 9 different medications (including supplements). I have to take two different anti-depressants because the Femara gave me severe depression. My hair thinned because of the Femara, so I have to use a type of concealer make-up to hide the thin spots. I have to style my hair a certain way to mask the thinness, all of which takes time. Then I have to pencil on my eyebrows because they never grew back fully. And now that I have been diagnosed with ONJ, I have to make sure I brush my teeth three times a day, floss twice a day, and use a rinse.

Again, I realize I should feel lucky to be alive, and there are people much worse off than me. I try to tell myself I should be glad I took the Zometa even though I developed ONJ because I would rather have ONJ than metastatic bc. But what is getting to me is taking all the medications to reduce side-effects from other medications and having to spend so long in the bathroom.

Does anyone else feel depressed by having to take medications to combat other side effects, or have similar feelings to mine.

Sorry for whining,

Ohilly

Comments

  • New Flower
    New Flower Member Posts: 4,294
    #2
    Ohilly
    sorry that you feel this way. I am not sure about Zometa helping you but this is life. Life after cancer is a very hard every day challenge and I completely understand your feelings.
    My eye lashes did not come back the way were. But seriously, I have been doing nothing about it. I cannot wear make up because my eyes get swollen from it (side effect of Taxotere). But seriously, I do not care. Prior my BC diagnosis (stage IIIC)I have never come to work without make up. Now I do. I do not wear slim tops too, instead I bought nice blouses. My vision has been affected by Chemo, so what? I am wearing glasses now. I do take medication, was on Tamoxifen, now Arimidex, both are sucks, Tamoxifen better, but I am pure metabolizer, now Arimidex and Zolidex. Supplements too. I have lymphedema, at leas 1 hour a day spend on stretches and massage, wearing compression sleeve and glove . Honestly, I am trying very hard not be upset about all what has happened to me. If you feel upset about medication please talk to your oncologist, maybe you need a break from your medications. Maybe you need a wonderful vacation or something which blows your mind away.
    Sending you a big hug,
    New Flower
  • ohilly
    ohilly Member Posts: 441
    #3
    New Flower said:

    Ohilly
    sorry that you feel this way. I am not sure about Zometa helping you but this is life. Life after cancer is a very hard every day challenge and I completely understand your feelings.
    My eye lashes did not come back the way were. But seriously, I have been doing nothing about it. I cannot wear make up because my eyes get swollen from it (side effect of Taxotere). But seriously, I do not care. Prior my BC diagnosis (stage IIIC)I have never come to work without make up. Now I do. I do not wear slim tops too, instead I bought nice blouses. My vision has been affected by Chemo, so what? I am wearing glasses now. I do take medication, was on Tamoxifen, now Arimidex, both are sucks, Tamoxifen better, but I am pure metabolizer, now Arimidex and Zolidex. Supplements too. I have lymphedema, at leas 1 hour a day spend on stretches and massage, wearing compression sleeve and glove . Honestly, I am trying very hard not be upset about all what has happened to me. If you feel upset about medication please talk to your oncologist, maybe you need a break from your medications. Maybe you need a wonderful vacation or something which blows your mind away.
    Sending you a big hug,
    New Flower

    thanks
    New Flower, thanks for replying. At least I'm not the only one. I think I was dealing with all okay until I got diagnosed with the ONJ. I was diagnosed with it less than 2 weeks ago, so I am probably just bummed out.

    Ohilly
  • New Flower
    New Flower Member Posts: 4,294
    #4
    ohilly said:

    thanks
    New Flower, thanks for replying. At least I'm not the only one. I think I was dealing with all okay until I got diagnosed with the ONJ. I was diagnosed with it less than 2 weeks ago, so I am probably just bummed out.

    Ohilly

    Thank you for participating in clinical trail
    it is very understandable. You have gotten devastating news. As for hair Tamoxifen is better for hair and bones. Ask you gynecologist (depending on what kind of surgery did you have) if Tamoxifen could be beneficial for you. I change my style keeping my hair very short.
    Hugs
  • Marsha Mulvey
    Marsha Mulvey Member Posts: 597 Member
    #5
    New Flower said:

    Thank you for participating in clinical trail
    it is very understandable. You have gotten devastating news. As for hair Tamoxifen is better for hair and bones. Ask you gynecologist (depending on what kind of surgery did you have) if Tamoxifen could be beneficial for you. I change my style keeping my hair very short.
    Hugs

    ohilly
    Just a thought: What if you continue your treatments but discontinue the "extra" meds for the side effects? Like you, I was always healthy and never took any meds. So now, while on Zometa, Herceptin, and either Taxol or Taxotere - I don't take anything else. The side effects are many, but do you think it might be possible to leave out all the rest?

    Wish there was a magic cure, if not for the cancer itself, then for all the problems created by the treatments.

    Best wishes. MM
  • ms.sunshine
    ms.sunshine Member Posts: 707 Member
    #6
    Marsha Mulvey said:

    ohilly
    Just a thought: What if you continue your treatments but discontinue the "extra" meds for the side effects? Like you, I was always healthy and never took any meds. So now, while on Zometa, Herceptin, and either Taxol or Taxotere - I don't take anything else. The side effects are many, but do you think it might be possible to leave out all the rest?

    Wish there was a magic cure, if not for the cancer itself, then for all the problems created by the treatments.

    Best wishes. MM

    I also use to not take any
    I also use to not take any meds now I take several supplements, beats the heck out of popping pain killers or dealing with the pain. Yes the supplements help without them I have bone/joint pain so bad I can't stand up straight. I hate taking all those pills, but at least there is something to help me without the wiped out feeling from pain killers.

    I'm beginning to think the key to dealing with this, is you can't compare the old you to the new you. What you use to do and how you looked before is the past. Now we just have to begin over. Do the best you can do.
  • natly15
    natly15 Member Posts: 1,941
    #7
    Ohilly dont think you are
    Ohilly dont think you are whining. "Cancer Sucks" there are pins and hats with that slogan, and I beleive that it encompasses all that we go thru. We get our down days and thats ok. We've been thru a lot physically and our bodies get tired and I believe that affects our emotions. I finished active treatment this past June 15 and I'm dealing with emotions and energy right now. Feel sorry for yourself for a little bit, I think thats a good thing but then move on and dont let those down days dominate your life. We are tough cookies and this is an all encompassing tough walk but we learn to enjoy every moment that we can enjoy in spite of it. Hugs
  • ohilly
    ohilly Member Posts: 441
    #8
    natly15 said:

    Ohilly dont think you are
    Ohilly dont think you are whining. "Cancer Sucks" there are pins and hats with that slogan, and I beleive that it encompasses all that we go thru. We get our down days and thats ok. We've been thru a lot physically and our bodies get tired and I believe that affects our emotions. I finished active treatment this past June 15 and I'm dealing with emotions and energy right now. Feel sorry for yourself for a little bit, I think thats a good thing but then move on and dont let those down days dominate your life. We are tough cookies and this is an all encompassing tough walk but we learn to enjoy every moment that we can enjoy in spite of it. Hugs

    thanks
    Thanks for all your support. This board has helped me through a lot. I think the thing that is really getting to me is all the time I spend in the bathroom. Anyone else feel this way?

    Ohilly
  • cahjah75
    cahjah75 Member Posts: 2,631
    #9
    ohilly said:

    thanks
    Thanks for all your support. This board has helped me through a lot. I think the thing that is really getting to me is all the time I spend in the bathroom. Anyone else feel this way?

    Ohilly

    I'm sorry
    you have something new to deal with. But, you have come to the right place to vent all you want because we understand. I'm saddened that the clinical trial was not a success for you. I thought Zometa was for bone metatastic bc??? Anyways, like you before age 50 I didn't take any medication at all. Unfortunately I gained 80#s during menopause and developed osteoarthritis and high blood pressure. I have been taking meds for both ever since. With chemo I have not needed to take any other medication other than Dex and Emend. Since they'll stop when treatment stops I'm ok with that. I was on an antidepressant for several years but not now. I would talk to your dr and ask about not using certain meds to curb side effects of others. As for dealing with the new "you" it's all relevant. I don't wear makeup but right now the steroids are making my face and my bald head break out like a 16 year old! I haven't lost my lashes or eyebrows yet but will learn next week at Look Good Feel Better program. I guess it's a matter of living with what we have now as the new normal.
    {{hugs}} Char
  • carkris
    carkris Member Posts: 4,553 Member
    #10
    cahjah75 said:

    I'm sorry
    you have something new to deal with. But, you have come to the right place to vent all you want because we understand. I'm saddened that the clinical trial was not a success for you. I thought Zometa was for bone metatastic bc??? Anyways, like you before age 50 I didn't take any medication at all. Unfortunately I gained 80#s during menopause and developed osteoarthritis and high blood pressure. I have been taking meds for both ever since. With chemo I have not needed to take any other medication other than Dex and Emend. Since they'll stop when treatment stops I'm ok with that. I was on an antidepressant for several years but not now. I would talk to your dr and ask about not using certain meds to curb side effects of others. As for dealing with the new "you" it's all relevant. I don't wear makeup but right now the steroids are making my face and my bald head break out like a 16 year old! I haven't lost my lashes or eyebrows yet but will learn next week at Look Good Feel Better program. I guess it's a matter of living with what we have now as the new normal.
    {{hugs}} Char

    I usually am philosophical
    I usually am philosophical about things but every once in a while I just get sick of it, and think WTF??????????????????????? No rhyme or reason just hits me, I think it is anger and the unfairness of it all. Then I get over it and move on. I think its normal, Are we supposed to like this? would we have chosen it? NOPE!!!!
  • ohilly
    ohilly Member Posts: 441
    #11
    carkris said:

    I usually am philosophical
    I usually am philosophical about things but every once in a while I just get sick of it, and think WTF??????????????????????? No rhyme or reason just hits me, I think it is anger and the unfairness of it all. Then I get over it and move on. I think its normal, Are we supposed to like this? would we have chosen it? NOPE!!!!

    but what about the bathroom
    Okay, but there is anyone else who used to take 5 minutes to get dressed and now spends 45 minutes in the bathroom taking medications and doing cosmetic things because their hair thinned, eyebrows didn't grow back, etc.?

    Ohilly
  • creampuff91344
    creampuff91344 Member Posts: 988
    #12
    ohilly said:

    but what about the bathroom
    Okay, but there is anyone else who used to take 5 minutes to get dressed and now spends 45 minutes in the bathroom taking medications and doing cosmetic things because their hair thinned, eyebrows didn't grow back, etc.?

    Ohilly

    Bathroom time
    Ohilly, I am one of the "oldies" on here, and remember when you first started posting regarding your hair loss. That was about two years ago. Now, two and a half hears later, I have started having problems with hair loss. My chemo hair loss was obviously something that just went with the territory, and when my hair came back in, it was thick and virtually the same as before. About six months ago, I started losing my hair again, little by little. I have discussed this with each of my doctors, and two hairdressers, and all say the same thing. The results of chemo and all of the other meds we take to make our bodies comfortable do take a toll on our hair, nails and skin. My oncologist yesterday told me that she takes 5000 units of Vitamin D3, which is a good source of natural oils for these areas of the body. I didn't ask about it, she just noticed my thinning hair when I went in for my six month appointment. The Vitamin D3, as well as Omega 3 (Fish oil) do a lot to keep our hair folicles lubricated and active. Yes, I do spend a lot more time in the bathroom getting ready in the mornings, and I just thank my lucky stars that I am still here to spend that time. My eyebrows are thin, my eyelashes are almost non-existent, but that just is hair. My body is doing much better, and the oncologist says that many people experience many changes from our old "normal". The suplements I take are things that are good for the body (I take calcium + D, D3 (5000 units), Vitamin B12, and Omega 3. Recently I added Dyflammanol, which is a supplement from the health food store, which is to help with the disease Tardive Dyskinesia (diagnosed after I took the drug Reglan for nausea during chemo). I guess what I am trying to say is, even though I am spending more time in the bathroom to get ready for the world in the mornings, I think how lucky the world is to still have me here to look at.....no matter how many changes have taken place in the past two years. It is a pain in the butt, but believe me, I would rather spend this time, than not be here to spend this time. My hair is thin, but I have learned that keeping it short makes it easier to work with, and also covers the scalp better. We do what we have to do to be able to do what we want to do. (I think this is a Chen quote.) It's good to hear from you again. Hope you find a way to get in and out of the bathroom quicker, but if you don't, put on some funky music and enjoy the 45 minutes you have to spend to meet the world each day. Hugs to you, Judy
  • ohilly
    ohilly Member Posts: 441
    #13
    creampuff91344 said:

    Bathroom time
    Ohilly, I am one of the "oldies" on here, and remember when you first started posting regarding your hair loss. That was about two years ago. Now, two and a half hears later, I have started having problems with hair loss. My chemo hair loss was obviously something that just went with the territory, and when my hair came back in, it was thick and virtually the same as before. About six months ago, I started losing my hair again, little by little. I have discussed this with each of my doctors, and two hairdressers, and all say the same thing. The results of chemo and all of the other meds we take to make our bodies comfortable do take a toll on our hair, nails and skin. My oncologist yesterday told me that she takes 5000 units of Vitamin D3, which is a good source of natural oils for these areas of the body. I didn't ask about it, she just noticed my thinning hair when I went in for my six month appointment. The Vitamin D3, as well as Omega 3 (Fish oil) do a lot to keep our hair folicles lubricated and active. Yes, I do spend a lot more time in the bathroom getting ready in the mornings, and I just thank my lucky stars that I am still here to spend that time. My eyebrows are thin, my eyelashes are almost non-existent, but that just is hair. My body is doing much better, and the oncologist says that many people experience many changes from our old "normal". The suplements I take are things that are good for the body (I take calcium + D, D3 (5000 units), Vitamin B12, and Omega 3. Recently I added Dyflammanol, which is a supplement from the health food store, which is to help with the disease Tardive Dyskinesia (diagnosed after I took the drug Reglan for nausea during chemo). I guess what I am trying to say is, even though I am spending more time in the bathroom to get ready for the world in the mornings, I think how lucky the world is to still have me here to look at.....no matter how many changes have taken place in the past two years. It is a pain in the butt, but believe me, I would rather spend this time, than not be here to spend this time. My hair is thin, but I have learned that keeping it short makes it easier to work with, and also covers the scalp better. We do what we have to do to be able to do what we want to do. (I think this is a Chen quote.) It's good to hear from you again. Hope you find a way to get in and out of the bathroom quicker, but if you don't, put on some funky music and enjoy the 45 minutes you have to spend to meet the world each day. Hugs to you, Judy

    a suggestion about hair
    Creampuff91344, I wanted to give you a suggestion for your hair - if you go online to www.thinninghairsolution.com, you will find that they sell supplements which are concealers to cover the thin spots on your hair. They work very well. The one I use is called Hair So Real.

    Of course you are right: I should be happy that I am alive to be able to spend 45 minutes in the bathroom each day. I know what cancer can do, as both my parents died of cancer. I think I was dealing with everything okay until I developed the devastating diagnosis of Osteonecrosis of the Jaw. Right now the ONJ is not causing me any problems except that I have a tiny bit of exposed bone under my tongue, but I am worried it is going to spread (just like cancer). The specialist told me she cannot tell if it will spread or not, but if it does they will treat infection with antibiotics and in the worse case scenario, I would have to have surgery but it is not disfiguring. She said my case was 'mild' so far and I am very, very far away at this point from having to have surgery.

    I think I am just temporarily discouraged, but thanks for responding. Try the hair concealer - it really works!

    Ohilly
  • ohilly
    ohilly Member Posts: 441
    #14
    creampuff91344 said:

    Bathroom time
    Ohilly, I am one of the "oldies" on here, and remember when you first started posting regarding your hair loss. That was about two years ago. Now, two and a half hears later, I have started having problems with hair loss. My chemo hair loss was obviously something that just went with the territory, and when my hair came back in, it was thick and virtually the same as before. About six months ago, I started losing my hair again, little by little. I have discussed this with each of my doctors, and two hairdressers, and all say the same thing. The results of chemo and all of the other meds we take to make our bodies comfortable do take a toll on our hair, nails and skin. My oncologist yesterday told me that she takes 5000 units of Vitamin D3, which is a good source of natural oils for these areas of the body. I didn't ask about it, she just noticed my thinning hair when I went in for my six month appointment. The Vitamin D3, as well as Omega 3 (Fish oil) do a lot to keep our hair folicles lubricated and active. Yes, I do spend a lot more time in the bathroom getting ready in the mornings, and I just thank my lucky stars that I am still here to spend that time. My eyebrows are thin, my eyelashes are almost non-existent, but that just is hair. My body is doing much better, and the oncologist says that many people experience many changes from our old "normal". The suplements I take are things that are good for the body (I take calcium + D, D3 (5000 units), Vitamin B12, and Omega 3. Recently I added Dyflammanol, which is a supplement from the health food store, which is to help with the disease Tardive Dyskinesia (diagnosed after I took the drug Reglan for nausea during chemo). I guess what I am trying to say is, even though I am spending more time in the bathroom to get ready for the world in the mornings, I think how lucky the world is to still have me here to look at.....no matter how many changes have taken place in the past two years. It is a pain in the butt, but believe me, I would rather spend this time, than not be here to spend this time. My hair is thin, but I have learned that keeping it short makes it easier to work with, and also covers the scalp better. We do what we have to do to be able to do what we want to do. (I think this is a Chen quote.) It's good to hear from you again. Hope you find a way to get in and out of the bathroom quicker, but if you don't, put on some funky music and enjoy the 45 minutes you have to spend to meet the world each day. Hugs to you, Judy

    a suggestion about hair
    Creampuff91344, I wanted to give you a suggestion for your hair - if you go online to www.thinninghairsolution.com, you will find that they sell supplements which are concealers to cover the thin spots on your hair. They work very well. The one I use is called Hair So Real.

    Of course you are right: I should be happy that I am alive to be able to spend 45 minutes in the bathroom each day. I know what cancer can do, as both my parents died of cancer. I think I was dealing with everything okay until I developed the devastating diagnosis of Osteonecrosis of the Jaw. Right now the ONJ is not causing me any problems except that I have a tiny bit of exposed bone under my tongue, but I am worried it is going to spread (just like cancer). The specialist told me she cannot tell if it will spread or not, but if it does they will treat infection with antibiotics and in the worse case scenario, I would have to have surgery but it is not disfiguring. She said my case was 'mild' so far and I am very, very far away at this point from having to have surgery.

    I think I am just temporarily discouraged, but thanks for responding. Try the hair concealer - it really works!

    Ohilly

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