Update on me.

jamiegww
jamiegww Member Posts: 384
in Breast Cancer #1
I've shared mostly my bad days with you so I thought I should at least update you on my situation. As some of you might remember I am a member of the TNBC club and I was diagnosed in July with mets to my bones, my right lung, and my chest wall. I began chemo again and the side effects were too much for me so my doctor lowered my dosage and it became more manageable. The side effects are still manageable but it is getting more difficult to start all over with them every three weeks. Sorry if I sound like a big baby. I had another infusion on Thursday and I asked the nurse practioner (the doctor is too busy to see me these days) how much longer this will go on. She said "until I can no longer tolerate it or there is progression of disease". That was not what I wanted to hear because I don't know how much longer I want to go on like this. I do feel fortunate that my PET scan in October showed much improvement but I'm not looking forward to a new year with new scans and paying for them because my insurance deductible will be resetting. I made the mistake of telling my husband that this might be my last Christmas. I later apologized to him and he asked me not to say stuff like that anymore because it upsets him too much so now I don't have anyone but you all to talk to. I feel so alone because I don't want to upset my family and I actually feel more sorry for them than I do for myself because they will still be here having to deal with everyday life. I also don't want to assume that something tragic can't happen to take them away from me before my time is over. Oh my gosh, I sound so crazy don't I??? Okay, I admit I am still refusing to take anti-depressants but maybe I will rethink that even though I don't see how that could change the way I feel. However, on a good note.........I complained to the NP that I didn't have the energy to get from one end of WalMart to the other so she ordered a B-12 shot for me and today I was able to walk an entire First Monday trade days flee market and walk from one end of WalMart to the other. That's the most exercise I've had in months so why can't I get to sleep tonight??? Go figure! If I wasn't afraid of waking my husband, I would probably drag out the Christmas tree and start decorating it. Maybe that B-12 shot wasn't such a good idea? Oh well, I want to thank you all for taking time to read about me and my problems when you all have your own problems to deal with. I love you all and wish you the best and I wish Santa could bring us all a Cure for Cancer!!!

HUGS!!!
Jamie

Comments

  • Dakota128
    Dakota128 Member Posts: 14
    #2
    I'm Here for You
    Hi Jamie, I just joined today and I just want to thank you for sharing with me your courageous fight. I am amazed at how much we can handle and endure. I believe, that we all have something to fight for and life is the greatest of all. Someday, Santa will find a cure for Cancer, maybe not in our lifetime, but in someone else's and that's alright with me.
    I hope that Santa brings you smiles, hugs and love from Family, friends and everyone here online.
    I'll write again.

    Thank you for being you,

    Dakota128
  • Mariannemm
    Mariannemm Member Posts: 136
    #3
    Turn to us
    It is hard for our families to hear us talk like that. Mine is the same way, they look at it as negitive. I look at it as realistic. For me just writing about my feelings and see it on the screen helps me so much. I have a friend I can talk openly with and she doesn't try to hush me up. Sometimes we need to get that off our chests. I wish you all the best. Marianne
  • Pinky68
    Pinky68 Member Posts: 206 Member
    #4
    Mariannemm said:

    Turn to us
    It is hard for our families to hear us talk like that. Mine is the same way, they look at it as negitive. I look at it as realistic. For me just writing about my feelings and see it on the screen helps me so much. I have a friend I can talk openly with and she doesn't try to hush me up. Sometimes we need to get that off our chests. I wish you all the best. Marianne

    Hi Jamie!
    I've been thinking of you, so glad you posted an update!! I'm glad the vitB injection helped with your energy level....I had them every 2 weeks for a while and the only thing it did was give me a bad headache within 15-20 mins, no increased energy level...I started drinking protein type slushy drinks, like Odwalla or Naked brand and taking vit gummy B....It did seem to help......As I've posted before, antidepressants have helped me tremendously..You said they won't change how you feel, but they kind of did for me. But of course you only do what you feel comfortable with. Please talk to your dr. because there are so many different ones available nowadays...
    I'm praying and thinking of you!
    Joyce
  • SIROD
    SIROD Member Posts: 2,194 Member
    #5
    Here For You Too!
    Dear Jamie,

    I'm here for you. Of all the breast cancer disease variations, it is TNBC that has it the worst, especially when it spreads. I wish that I could offer you some uplifting thoughts. I believe your complaints, feelings are right on with reality of what this disease is about especially for TNBC.

    Santa can't bring us all a cure, because he would need scientists to be working on metastatic breast cancer which is not very well funded. Out of the billions raised only 2% goes in research for MBC. Komen, the best funded of all the groups, designate a biggest profits raised from "Race for the Cure" to awareness not research. I am irate for women like you because your only option is chemotherapies. So you are not crazy.

    Can you not find another oncologist, one that will see you? I refuse to see the NP. I am paying to see the oncologist, so are you. I appreciate the knowledge of NP but for stage IV, it should be the oncologist that you see for your appointments. If your stable on the next scan, why can't you have a break from treatment?"
    My oncologist stated that "breaks are needed as they were not here to torment us". Ask to see you oncologist and ask when you can expect a break from treatment.

    Thinking of you and wishing you some hope for a little joy.

    Doris
  • missrenee
    missrenee Member Posts: 2,136 Member
    #6
    SIROD said:

    Here For You Too!
    Dear Jamie,

    I'm here for you. Of all the breast cancer disease variations, it is TNBC that has it the worst, especially when it spreads. I wish that I could offer you some uplifting thoughts. I believe your complaints, feelings are right on with reality of what this disease is about especially for TNBC.

    Santa can't bring us all a cure, because he would need scientists to be working on metastatic breast cancer which is not very well funded. Out of the billions raised only 2% goes in research for MBC. Komen, the best funded of all the groups, designate a biggest profits raised from "Race for the Cure" to awareness not research. I am irate for women like you because your only option is chemotherapies. So you are not crazy.

    Can you not find another oncologist, one that will see you? I refuse to see the NP. I am paying to see the oncologist, so are you. I appreciate the knowledge of NP but for stage IV, it should be the oncologist that you see for your appointments. If your stable on the next scan, why can't you have a break from treatment?"
    My oncologist stated that "breaks are needed as they were not here to torment us". Ask to see you oncologist and ask when you can expect a break from treatment.

    Thinking of you and wishing you some hope for a little joy.

    Doris

    Hi Jamie
    I'm glad you let us know how you're feeling. I agree with Doris above--I'm Stage 4 as well and I feel that's important enough to see the doctor and I personally see my oncologist once a month when I have my treatments.

    It's funny--many of us have the thoughts like you do--could this be my last Christmas? I recently had my first grandchild born in July. When I was rediagnosed at Stage 4 in January of this year, my only thought was, "Please God, let me know my grandson." I am very hopeful and optimistic about my situation, but it's only natural to feel this way. Cancer makes it so you don't take anything for granted--especially time. But, it's hard for our family and friends to deal with this--especially if we say it out loud. But, in our minds, it's there.

    Glad you came here to talk about it. I'm really hoping and praying that your treatment works wonders, is kind to you and you feel peace and comfort.

    Hugs, Renee
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    #7
    I also agree with Doris and
    I also agree with Doris and Renee, you should be seeing an oncologist. You pay for that attention, and should get that attention. If your onc is too busy to see you, you should consider a second opinion or another doc.

    I think you know I'm also stage IV, TNIBC. When I asked my doc about 'how long' I was told 'as long as it's working'. I have had one break from chemo...I was working full time and doing chemo. I exhausted myself, so I took a leave of absence and a break from chemo. That's also when I started taking celexa, and it has made a difference for me. It didn't make an immediate difference, it takes a while. But I started feeling more like me, instead of zombie me going through the motions.

    I don't know what chemo you are on, or what's appropriate for you. But I do know there are lots of options, you might ask about what those other options are in your case. Some of them might come with fewer side effects.

    It's good to hear from you. Keep coming back. And best wishes.

    Hugs,

    Linda
  • jamiegww
    jamiegww Member Posts: 384
    #8
    Gabe N Abby Mom said:

    I also agree with Doris and
    I also agree with Doris and Renee, you should be seeing an oncologist. You pay for that attention, and should get that attention. If your onc is too busy to see you, you should consider a second opinion or another doc.

    I think you know I'm also stage IV, TNIBC. When I asked my doc about 'how long' I was told 'as long as it's working'. I have had one break from chemo...I was working full time and doing chemo. I exhausted myself, so I took a leave of absence and a break from chemo. That's also when I started taking celexa, and it has made a difference for me. It didn't make an immediate difference, it takes a while. But I started feeling more like me, instead of zombie me going through the motions.

    I don't know what chemo you are on, or what's appropriate for you. But I do know there are lots of options, you might ask about what those other options are in your case. Some of them might come with fewer side effects.

    It's good to hear from you. Keep coming back. And best wishes.

    Hugs,

    Linda

    Thank you all!
    I just wanted to say God Bless you all for your comments and continued support. I don't know what I would do without you.

    HUGS!!!
    Jamie
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #9
    jamiegww said:

    Thank you all!
    I just wanted to say God Bless you all for your comments and continued support. I don't know what I would do without you.

    HUGS!!!
    Jamie

    Jamie ..
    Thank you for the update! I hate that you can not get a few minutes with your
    Oncologist!!! Makes one feel like we are just a number, and not a WARRIOR!

    You truly are suffering from chemo infused side efforts -- we are NOT numbers,
    our side efforts don't all fall within that 'Bell Standard' chemo side efforts
    chart -- which is decades old.

    Insist on speaking with your Oncologist - one, on one. If he blows you off, or
    dismisses your health concerns -- seek a 2nd, or 3rd opinion. ** Please get copies
    of all your medical records, chemo infusions etc -- before proceeding to a new
    Oncologist. This will streamline your first appointment, and provide some insight
    to your NEW Onco's course of action.

    This is your BODY, your LIFE.

    Strength, Courage, and HOPE for a Cure.

    Vicki Sam
  • jamiegww
    jamiegww Member Posts: 384
    #10
    VickiSam said:

    Jamie ..
    Thank you for the update! I hate that you can not get a few minutes with your
    Oncologist!!! Makes one feel like we are just a number, and not a WARRIOR!

    You truly are suffering from chemo infused side efforts -- we are NOT numbers,
    our side efforts don't all fall within that 'Bell Standard' chemo side efforts
    chart -- which is decades old.

    Insist on speaking with your Oncologist - one, on one. If he blows you off, or
    dismisses your health concerns -- seek a 2nd, or 3rd opinion. ** Please get copies
    of all your medical records, chemo infusions etc -- before proceeding to a new
    Oncologist. This will streamline your first appointment, and provide some insight
    to your NEW Onco's course of action.

    This is your BODY, your LIFE.

    Strength, Courage, and HOPE for a Cure.

    Vicki Sam

    I got appointment to see onc.
    I asked them to cancel my next chemo scheduled for Dec. 27th (I had already put off the Dec. 20th infusion so I could feel better for Christmas) and suddenly I was being told my onc was available on Dec. 20th so I have a 9:00 AM appointment that day if they don't call and cancel it before that. I hope she agrees that I need a chemo break. Next year (how often do we get to say that?) I will start looking into options for getting a second opinion.

    By the way...Vicki Sam.....when trying to cancel gets me an appointment, I don't feel like a number; I feel like a checkbook. My husband thinks they are only interested in my money and I really hope he is wrong but why should they care about me personally?

    Thanks again for everyone's prayers and support!

    HUGS!!!
    Jamie
  • New Flower
    New Flower Member Posts: 4,294
    #11
    jamiegww said:

    I got appointment to see onc.
    I asked them to cancel my next chemo scheduled for Dec. 27th (I had already put off the Dec. 20th infusion so I could feel better for Christmas) and suddenly I was being told my onc was available on Dec. 20th so I have a 9:00 AM appointment that day if they don't call and cancel it before that. I hope she agrees that I need a chemo break. Next year (how often do we get to say that?) I will start looking into options for getting a second opinion.

    By the way...Vicki Sam.....when trying to cancel gets me an appointment, I don't feel like a number; I feel like a checkbook. My husband thinks they are only interested in my money and I really hope he is wrong but why should they care about me personally?

    Thanks again for everyone's prayers and support!

    HUGS!!!
    Jamie

    Hi Jamie
    I am glad that you got an appointment. I agree with others, you need to be seen by doctor every month. I changed my first oncologist two and half years ago because of similar issues he was too busy, being Director of oncology, to a patient who is in remission. I was looking for a new compassionate one. My primary care Who by the way has been my third one since cancer diagnosis (two were fired by me due to lack of personal attention) suggested a young one, I went for a second opinion and is staying with her. Surprisingly she is a former resident of my first one.
    Good luck with your appoint and happy holidays

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