Can I do this

GwynD
GwynD Member Posts: 5
in Breast Cancer #1

so much has happended so fast. Nov 10th got the diagnosis call confirming I have invasive ductual carcenoma. Lumpectomy and some lymph nodes removed on nov 19th. Tests results 3cm, stage 2, grade 3, no evidence in blood stream, lymphs negativ, margins ok. Dec 17th another surgery to put port in (which two weeks later is too deep and isn't working), dec 18th I started chemo. The last 12 days have been horrific. I have been sick, violently sick everyday brusing my chest and pulling my back muscles. last Friday was back in the hospital cuz I couldn't swallow due to huge white bumps on the back of my tongue and hundreds of blisters on my throat, thank goodness for numbing mouth wash. Today I feel better finally, not even one dry heave (keeping fingers crossed). As I'm learning more and more and talking to survivors, im finding out that chemo for 24 weeks every week then radiation every day for 8 weeks seems like a long haul. The Drs are leading me to believe my CANCER is not too bad and since the tumor was over 2cm (it was 3) I have to have chemo. but my treatment schedule says the opposite. They keep saying We don't want to scare you, but I'm getting more scared as time goes by. And being so incredibly sick I feel like the chemo is killing me along side the CANCER. I see my onc tomorrow and I really hope he will decrease the strength of the chemo. If not I don't see how I will physically be able to handle it. If anyone has some suggestions to ask my dr or stuff I should bring up with him please let me know, since I seem to freeze up when I think of what to ask or say. Also I'd love to hear others stories relating to this and how they are getting or have got through this. Thank you

Comments

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #2
    Preventative drugs

    I was on steroids, anti-nausea meds and maybe something else (don't remember) to prevent some of the symptoms you're describing.  Are you on anything? You may need something different.  Maybe you don't need a decrease in chemo, but an increase in meds to help.   Does your oncologist know about your experience?  Our oncologists have a whole lot of meds to give us to help us through chemo.  Unfortunately, we're all different and maybe your reaction was  more than anticipated.   Many do experience mouth sores and as you know, there are meds for that.  I had a relatively easy time with chemo, but I never ever want to do it again.  I had a whole lot of side effects that I wasn't prepared for, but as soon as my oncologist knew about them, there was typically something to help. 

    So, yes, you can do this, but you need help.  I have heard that the first chemo is the worst, and then I've heard that the side effects are cumulative, so who the heck knows.  Be sure to tell your oncologist about all of your side effects and how incapacitating they were for you because sometimes they might say, "sorry, that's how it is".   Tell him/her you won't be able to do this without something to help with whatever you need help with.   There are, of course, some fortunate folks who seem to have no side effects, but it seems you're not one of them.   Be sure to take someone with you, especially since you freeze up.  Go prepared with a list of questions and get them all answered.  You will also learn when to expect side effects and when to expect them to go away.  I knew that for a few days I would be down and out but then it would pass. 

    Your questions about your chemo protocol and why you "need" it should be at the top of your list of questions.  Your oncologist should be able to tell you statistics and why s/he has chosen the protocol you're on.  I feel if I know why some decisions were made, it helps me accept (or not) the treatments/tests/ whatever.   Usually, my docs yap about why they're recommending this or that without my asking.  They like to educate their patients.  In case you don't already know it, there are so many different types of breast cancer that transcend beyond Stage and Grade and certain ones are treated with X while others are treated with Y or Z or even ABC.   There are also different chemo cocktails - it is not a one fits all with breast cancer, so it's difficult to compare ourselves to what someone else had and how they tolerated treatments.  If nothing else, this is quite a learning experience.

    Good luck with your appointment.  Hope next cycle is much better for you.

    Suzanne

     

  • camul
    camul Member Posts: 2,537
    #3
    I too was on steroid infusion
    Before each chemo treatment and took anti med pror and then ever 8hrs for the first coule of das. Dink alot of wter now, to wash ot out of your system. Eat what you are hungary for
    I was on chemo weekly for 2 1/2 years this time. The steroid and benydrl like anti nausea comho worked so well for me. The first time around, I had it every 21 days and was sick from day one to Day 4 or 5. Now the meds are so much better than the first time around.
    Talk to your dr and the infusion nurse. Bot of mine were very helpful, but mostly the nursre.
    I wish you a better second round.
    Welcome,
    Carol
  • GlowMore
    GlowMore Member Posts: 789 Member
    #4
    Oncologist today*

    I missed the discussion boards yesterday...so missed your post Gwyn.....sorry.   I would have recommended that you write down all your questions and that you take someone with you.  Prayers for a good meeting today with your Oncologist and that you will get the help you need to deal with all the side effects.  With the lymph nodes not having cancer ...that is very good news.  I would indeed want to know exactly why I was having chemo and would want to know exactly what each drug was.  I did the 5FU/Adriamycn/Cytoxin back in 2002....and my cancer had spread to my lymph nodes.   Another thing you said was that your port was too deep and not working?    Were they not able to use it for the infusion?  My port seemed to work ok and I had it in for many years and thanked God for it every time they were able to use it instead of punching holes in my arm.   Please let us know what happens today with your doctor and we send you prayers for strength and courage....if we did it you can too girl ***  Hang in There***  Glo

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #5
    sorry to hear of your

    sorry to hear of your situation

     

    I have no advice-I had two lumpetomies (same side) and radiation...no chemo

     

    I am sure others will give you get advice

     

    Denise

  • GwynD
    GwynD Member Posts: 5
    #6
    disneyfan2008 said:

    sorry to hear of your

    sorry to hear of your situation

     

    I have no advice-I had two lumpetomies (same side) and radiation...no chemo

     

    I am sure others will give you get advice

     

    Denise

    Onc appt

    Well my onc appt went good. At 1st I thought he wasn't gonna change my chemo meds, he seemed reluctant. But he did decide to change from Adriamycin and Cytoxan for 24 weeks every week to Decadron, Emend, Epirubicin and Fu for 6 weeks every 21 days. After tomorrow I'll have 4 more treatments!! We are hoping my terrible side effects will decrease. Also he gave me a script for phenagrin and also one for a patch that I can wear for a week at a time that constantly delivers anti-nausea medicine. I feel very good about this appt!! Thank you guys!!!! 

  • button2
    button2 Member Posts: 421
    #7
    GwynD said:

    Onc appt

    Well my onc appt went good. At 1st I thought he wasn't gonna change my chemo meds, he seemed reluctant. But he did decide to change from Adriamycin and Cytoxan for 24 weeks every week to Decadron, Emend, Epirubicin and Fu for 6 weeks every 21 days. After tomorrow I'll have 4 more treatments!! We are hoping my terrible side effects will decrease. Also he gave me a script for phenagrin and also one for a patch that I can wear for a week at a time that constantly delivers anti-nausea medicine. I feel very good about this appt!! Thank you guys!!!! 

    Keep fighting Gwyn!

    I am glad you got the help you needed. Before you know it, your nightmare will be over and you will be on here helping other people get through their chemo! You'll feel better sooner than you think...Happy 2015..Hugs, Anna

  • Puffin2014
    Puffin2014 Member Posts: 531 Member
    #8
    GwynD said:

    Onc appt

    Well my onc appt went good. At 1st I thought he wasn't gonna change my chemo meds, he seemed reluctant. But he did decide to change from Adriamycin and Cytoxan for 24 weeks every week to Decadron, Emend, Epirubicin and Fu for 6 weeks every 21 days. After tomorrow I'll have 4 more treatments!! We are hoping my terrible side effects will decrease. Also he gave me a script for phenagrin and also one for a patch that I can wear for a week at a time that constantly delivers anti-nausea medicine. I feel very good about this appt!! Thank you guys!!!! 

    anti nausea meds

    I had Emend prior to my treatments- it's awesome! I also had the Decadron. It served its purpose but be prepared for some side effects from it - very common to have insomnia the days you're on it and for a couple days after, just roll with it, check out the chat room here to see if anyone else is up with insomnia, I met a couple great people here in the middle of the night and one became my chemo sister. She and I were on the same meds and schedule. Also just plan to take naps those days. Decadron also causes fluid retention, my face got really puffy for a few days and my legs got swollen so I tried to keep them elevated on pillows in my recliner. The side effects go away as the Decadron wears off, small price to pay in exchange for the good effects.

  • gracesmiles52
    gracesmiles52 Member Posts: 10
    #9
    ;( scary

    I am new at this Cancer thing. My timeline is about the same as yours. In Nov I had a Lumpectomy with Sentile Node biopsy and the Cancer has spread to my Lymph glands. Now I am looking at Mastsectomy, Chemo, radiationa nd pills. I am scarfed it has been 4 days and I haven't slept, nauseated, diarreah from the thought of all the poison from the Chemo and radiation. I am questioning how can i consent to putting these poisons in my body. The Oncologist said of I won't do the treatment I will die. I am thinking die from the sideeffects of the treatment or live my life out and die naturally (cancer later). I also have Multiple Sclerosis and am not looking forward to how the chemo and radiation will affect that. I do not want to go back to a wheelchair. I am a basket case right now. My heart goes out to you and I dread this so much it is making me sick. I will have Mastectomy in 3 weeks. I don't even mind having the Mastectomy it's the treatment.Scared. Dr.'s do scare you mine said if you don't do this you will die and I said well I am not afraid to die. My tumor was smaller than yours I don't know what length of time they have planned for me. I am so scared and nervous. Can I do this? Do I Want to do it? Does anyone besides GwynD feel this way? I am looking for a support group to help me through this.

    Thank you,

    KAthy 

  • gracesmiles52
    gracesmiles52 Member Posts: 10
    #10
    GwynD said:

    Onc appt

    Well my onc appt went good. At 1st I thought he wasn't gonna change my chemo meds, he seemed reluctant. But he did decide to change from Adriamycin and Cytoxan for 24 weeks every week to Decadron, Emend, Epirubicin and Fu for 6 weeks every 21 days. After tomorrow I'll have 4 more treatments!! We are hoping my terrible side effects will decrease. Also he gave me a script for phenagrin and also one for a patch that I can wear for a week at a time that constantly delivers anti-nausea medicine. I feel very good about this appt!! Thank you guys!!!! 

    YEA

    I am so glad the Oncologist was able to work with getting you something different. It amazes me That they have apill for everything. Oh and I hate pills :)

     

  • gracesmiles52
    gracesmiles52 Member Posts: 10
    #11
    GlowMore said:

    Oncologist today*

    I missed the discussion boards yesterday...so missed your post Gwyn.....sorry.   I would have recommended that you write down all your questions and that you take someone with you.  Prayers for a good meeting today with your Oncologist and that you will get the help you need to deal with all the side effects.  With the lymph nodes not having cancer ...that is very good news.  I would indeed want to know exactly why I was having chemo and would want to know exactly what each drug was.  I did the 5FU/Adriamycn/Cytoxin back in 2002....and my cancer had spread to my lymph nodes.   Another thing you said was that your port was too deep and not working?    Were they not able to use it for the infusion?  My port seemed to work ok and I had it in for many years and thanked God for it every time they were able to use it instead of punching holes in my arm.   Please let us know what happens today with your doctor and we send you prayers for strength and courage....if we did it you can too girl ***  Hang in There***  Glo

    Hello GLowmore MS

    Glowmore. I am just beginning my Breast Cancer journey. I am nervous, scared, angry and confused. It has been a month since my diagnosis and 3 days since I found out it has gone into my Lymph glands. Will have a MAstectomy in 3 weeks, then Chemo, then radiation, then pills. My question is I have Multiple Sclerosis and I am afraid the treatment will make my MS relapse and I will be sick with that as well. I know Dr.'s have a pill for everything but me going back to a wheelchair is very real for me and very scary.I have not been able to calm down this week. I would appreciate any information you can give me please. I would almost rather die from the Cancer than from the sideeffects of the treatment 10 years down the road. My brain is in a sad place right now. I have been positive, wore rose colored glasses and a happy person. This has thrown me a loop.

    Can you help add any advice for the MS questions.

    Thank you and blessings,

    KAthy

  • Flame825
    Flame825 Member Posts: 24
    #12
    GwynD said:

    Onc appt

    Well my onc appt went good. At 1st I thought he wasn't gonna change my chemo meds, he seemed reluctant. But he did decide to change from Adriamycin and Cytoxan for 24 weeks every week to Decadron, Emend, Epirubicin and Fu for 6 weeks every 21 days. After tomorrow I'll have 4 more treatments!! We are hoping my terrible side effects will decrease. Also he gave me a script for phenagrin and also one for a patch that I can wear for a week at a time that constantly delivers anti-nausea medicine. I feel very good about this appt!! Thank you guys!!!! 

    Treatment

    Our cancers are very similar.  Our treatments are drastically dIferent.  But I am on A/c but before they give it to me the give me anti nausea and then I have of ran 8mg.  Then if that doesn't help I also have compazine 10mg.  I know drs treat differently.  But here I also have a cancer care nurse who is my angel. She gave me a big folder full of information supplied by the ACN.  

    they think my port might have to be taken out and replaced because while in the hospital they said it could also be the clots that they can't draw blood.  

    as far as the port, I am just sorry I didn't have it put in before my first dose of chemo.  

    Well seems like I have blabbed long enough.  Take care and ask questions take someone with you.  Take notes.  I am so grateful that between my husband and my cancer care nurse I pretty much understand what's happening.  

     

    Janice

  • Flame825
    Flame825 Member Posts: 24
    #13
    gracesmiles52 said:

    ;( scary

    I am new at this Cancer thing. My timeline is about the same as yours. In Nov I had a Lumpectomy with Sentile Node biopsy and the Cancer has spread to my Lymph glands. Now I am looking at Mastsectomy, Chemo, radiationa nd pills. I am scarfed it has been 4 days and I haven't slept, nauseated, diarreah from the thought of all the poison from the Chemo and radiation. I am questioning how can i consent to putting these poisons in my body. The Oncologist said of I won't do the treatment I will die. I am thinking die from the sideeffects of the treatment or live my life out and die naturally (cancer later). I also have Multiple Sclerosis and am not looking forward to how the chemo and radiation will affect that. I do not want to go back to a wheelchair. I am a basket case right now. My heart goes out to you and I dread this so much it is making me sick. I will have Mastectomy in 3 weeks. I don't even mind having the Mastectomy it's the treatment.Scared. Dr.'s do scare you mine said if you don't do this you will die and I said well I am not afraid to die. My tumor was smaller than yours I don't know what length of time they have planned for me. I am so scared and nervous. Can I do this? Do I Want to do it? Does anyone besides GwynD feel this way? I am looking for a support group to help me through this.

    Thank you,

    KAthy 

    You can do it!

    for your anxiety ask for something.  They can also give me the meds I mentioned.  Do not be afraid to talk to your dr.  If you don't understand have him repeat it.  Do you have the option for a second opinion?  

    Take care.

     

  • mschaben
    mschaben Member Posts: 87
    #14
    GwynD said:

    Onc appt

    Well my onc appt went good. At 1st I thought he wasn't gonna change my chemo meds, he seemed reluctant. But he did decide to change from Adriamycin and Cytoxan for 24 weeks every week to Decadron, Emend, Epirubicin and Fu for 6 weeks every 21 days. After tomorrow I'll have 4 more treatments!! We are hoping my terrible side effects will decrease. Also he gave me a script for phenagrin and also one for a patch that I can wear for a week at a time that constantly delivers anti-nausea medicine. I feel very good about this appt!! Thank you guys!!!! 

    Hello

    Hi my name is Mary , I am 39 years old and a mother of five.  I have exact diagnosis as u with lymph nodes but I was her2 pos also . my chemo consists of diff meds.. I haven't started yet.  I was told the adriamyacin is very hard on a person.  my four meds are newer and hopefully won't b too bad.  I am sorry you are having a bad experience.  It is crazy how many diff kinds of breast cancers there are and the variations in treatment.  I hope you can get some meds to help you.  I hope to get my drains out tomorrow as they are beginning to hurt.   The following week will have port put in and chemo started.  Do u mind me asking how the placing the port was for u?  praying for you.. Be strong!

     

    Mary

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