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BREAST CANCER & ME *DECISIONS* Part 3

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    #16
    I love this forum - I can have 2 different illnesses and meet people with the same combo (lucky us ). I did the PET scan yesterday. I thought a PET scan does the whole body but to me the disc looks like it's only that one breast. I have the disc (don't really understand it) and I'll have the report in a week.

    The oncologist called me (she's very young and nice [not full of herself like older Drs often are] but being led by a much older experienced oncologist so hopefully that will give me good care since they will actually discuss my case all the time). She spoke with the neuro and they're definitely stopping my Tysabri but she thinks the chemo will help my MS too. I have an appointment with my neuro today so I'll find out if he wants to give me steroids meanwhile and then what the plan is. After I get the results of the PET scan I'll go to the oncologist and they'll start chemo.

    I'm still avoiding telling people. I told 3 of my sisters and my parents - Didn't tell my 4th sister yet just cause she just made a wedding and I didn't want to put this in. I didn't tell my brother cause I'm sure his wife will drive me crazy (that's her personality). I didn't tell my husband's family cause I don't want hundreds of well-meaning phone calls every day. I told one very close friend of mine who also had BC ten years ago and she's good for medical advice too.

    So I'm happy that I can keep posting here - thanks
    Dx 1/86 at age 23
    Copaxone 1993 - 2011 (except when I was pregnant or nursing)
    Tysabri - 2011 - present

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      #17
      Hi Donna,

      I'm so sorry you are facing breast cancer on top of having MS.

      Lemtrada (Alemtumazab) may be used to treat a certain type of B-cell leukemia, which is why it won't also work for your breast cancer.

      Cytoxan (Cyclophosphamide) is the name of the chemo drug that can be used for breast cancer and MS.

      My MS Specialist doesn't have a lot of faith in certain stem cell trials that use high doses of chemotherapy, because he believes the only reason anyone with MS may have any (short term) positive results is because of that drug, not because of the stem cell treatment.

      This is from WebMD and most likely sums up why your oncologist thinks the chemotherapy will also help your MS:

      "In many cases, inflammation results from autoimmunity, a malfunction of the immune system where one's own tissues or organs are not recognized as such and are attacked by the body's immune system.

      Chemotherapy helps people with certain inflammatory and autoimmune diseases because it slows cell reproduction and decreases certain products made by these cells that cause an inflammatory response to occur."

      Good luck with your treatment. Hoping the best for you!
      Kimba

      “When you change the way you look at things, the things you look at change.” ― Max Planck

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        #18
        So here's where I now stand. I did a PET scan and there's no more cancer in the breast or lymph nodes but because my cancer was triple negative I still have to have chemo . 6 times spread out. Once every three weeks to make sure to get rid of any possible hidden cell. They're giving me CMF (like I know the difference - Doctors always give you too much info). My hair won't fall out!! and I think they're not doing one that will make me numb. It doesn't sound too bad and I hope I'm not being overly optimistic. I think after I start the chemo I'll actually let my husband's family know cause then I'll have my own experience and won't have to listen to their well-meaning useless advice.

        I kind of feel like I had BC and now I'm just taking preventative steps, but that's not how people will hear it the minute they hear the words breast cancer.
        Dx 1/86 at age 23
        Copaxone 1993 - 2011 (except when I was pregnant or nursing)
        Tysabri - 2011 - present

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          #19
          hang in there!!!

          Originally posted by DonnaD View Post
          So here's where I now stand. I did a PET scan and there's no more cancer in the breast or lymph nodes but because my cancer was triple negative I still have to have chemo . 6 times spread out. Once every three weeks to make sure to get rid of any possible hidden cell. They're giving me CMF (like I know the difference - Doctors always give you too much info). My hair won't fall out!! and I think they're not doing one that will make me numb. It doesn't sound too bad and I hope I'm not being overly optimistic. I think after I start the chemo I'll actually let my husband's family know cause then I'll have my own experience and won't have to listen to their well-meaning useless advice.

          I kind of feel like I had BC and now I'm just taking preventative steps, but that's not how people will hear it the minute they hear the words breast cancer.
          donna, it sounds like you have a wonderful medical team taking care of you! thank God!
          will keep praying for you.
          you have been through and are still being treated for BC. unwanted advice is hard to take. just try to smile and tell them you have excellent drs. taking care of you. and if you can say it sincerely , 'thanks for your concern, but i've got it covered' or something to the effect to hopefully hush them up!
          well meaning people would give me advice and drs to see, etc. even though the whole surgery & everything was over! only you can decide what is best for your body.
          i'm proud of how well you've handled this trial.
          continue to hang in there. i pray the chemo will be as easy on you as they predict.

          take care & God bless ya!
          "All things are possible for those who believe." Jesus

          Comment


            #20
            I had my first chemo treatment last Tuesday. No big deal maybe cause I'm used to monthly IVs from the tysabri (I can imagine someone not used to IV's being freaked out by the idea of getting an IV for 2 hours). Kind of sad - I'm used to being sick . They pumped in lots of anti-nausea drugs so I left there feeling totally fine till the evening when I started to get nauseous. But they gave me 3 different types of anti-nauseau pills that I just kept popping for the next two days and never got worse than just that uncomfortable feeling. So for 2 days I basically sat in bed trying to at least drink a lot and feeling a little weak.

            I hate the idea of going back to do this again. I know I should be so grateful that my reaction was so mild but I hate the idea of feeling nauseous. I'm also afraid to count on my reaction not getting worse each time.

            Thursday I'm going to the oncologist and I'm going to beg for more anti-nausea drugs for next time (an IV would be perfect but I can't do that at home )

            I planned to tell my sister in law after the first chemo but now I really don't feel like having to discuss this with anyone (my sisters are bad enough). In 3 months it will be over
            Dx 1/86 at age 23
            Copaxone 1993 - 2011 (except when I was pregnant or nursing)
            Tysabri - 2011 - present

            Comment


              #21
              Originally posted by DonnaD View Post
              I had my first chemo treatment last Tuesday.
              So for 2 days I basically sat in bed trying to at least drink a lot and feeling a little weak.

              I hate the idea of going back to do this again. I know I should be so grateful that my reaction was so mild but I hate the idea of feeling nauseous. I'm also afraid to count on my reaction not getting worse each time.

              I planned to tell my sister in law after the first chemo but now I really don't feel like having to discuss this with anyone (my sisters are bad enough). In 3 months it will be over
              Hi DonnaD. I had been wondering how you were doing. It's good to see you again.

              It is good to hear that your reactions to the chemo were 'mild' but I can certainly understand not wanting to go through it again. But as you said - in 3 months it will be over.

              Hopefully you were still still able to 'stomach' your morning coffee?

              Here is hoping that the next (and all other) treatments be better - or at least not any worse than this one was. Hope you get to feeling better soon.

              Comment


                #22
                Originally posted by DonnaD View Post
                I had my first chemo treatment last Tuesday. No big deal maybe cause I'm used to monthly IVs from the tysabri (I can imagine someone not used to IV's being freaked out by the idea of getting an IV for 2 hours). Kind of sad - I'm used to being sick . They pumped in lots of anti-nausea drugs so I left there feeling totally fine till the evening when I started to get nauseous. But they gave me 3 different types of anti-nauseau pills that I just kept popping for the next two days and never got worse than just that uncomfortable feeling. So for 2 days I basically sat in bed trying to at least drink a lot and feeling a little weak.

                I hate the idea of going back to do this again. I know I should be so grateful that my reaction was so mild but I hate the idea of feeling nauseous. I'm also afraid to count on my reaction not getting worse each time.
                ...
                so glad your 1st round went well. it is sad that IV drugs are routine for so many of us!

                you've probably tried this already.
                i didn't have to do chemo thankfully, but get really sick with IV roids.

                i have found that drinking chai tea (especially the black spice tea- they now have green, white & every other kind under the sun!) the whole time i was on roids really calmed my stomach down.
                i didn't have the burning throat sensation or wanting to throw up.
                it didn't do much for my appetite but i was pleased with how well my nausea was under control.

                oh! discovered ginger snaps too are great!

                praying this next time goes easy on ya!

                take care & God bless ya!
                "All things are possible for those who believe." Jesus

                Comment


                  #23
                  Had my third chemo (out of six). I'm really so grateful that I really have minimal nausea. really just feeling a little uncomfortable. I take any drug they'll give me for the nausea and I got those bracelets that people wear for seasickness. I'm not even sure if I put them in the right spot . So this cancer is really just an inconvenience for me. The only real problem is that while all my edges were clean and it seems like I'll be home free, with this triple negative I think I'm at high risk for re-occurrence. I still haven't told anyone. Why would I? I don't want to discuss it. I just want it to go away
                  Dx 1/86 at age 23
                  Copaxone 1993 - 2011 (except when I was pregnant or nursing)
                  Tysabri - 2011 - present

                  Comment


                    #24
                    Finished Chemo!! I had 6 doses three weeks apart. I should get the chemo award. Was only slightly nauseous for 2 days (popped all the good pills). My hair thinned out a little but I'm far from bald. They gave me CMF chemo. It may have been lighter because of the MS. Or lighter cause the lumpectomy took everything out and my edges were clean. I'm still going to have radiation. I pushed it up a week and lessened the length so I can go on a family vacation in the middle of August. My problem is this triple negative.

                    The problem with the radiation is that it's 5 days a week and it's close to an hour away from home (and I don't drive).

                    The cancer and chemo seemed to have no affect on my MS (either way)
                    Dx 1/86 at age 23
                    Copaxone 1993 - 2011 (except when I was pregnant or nursing)
                    Tysabri - 2011 - present

                    Comment


                      #25
                      Keep on keeping on

                      Dear Donna,
                      Happy to hear that you have completed your chemo! And even happier that you are feeling so well.

                      In terms of "recurrence": To worry about a future you can't control is futile, and it has its own negative consequences both physically and emotionally. A certain amount of denial is useful. LOL

                      Thank you for sharing your story with all of us survivors.
                      Stay lifted,
                      Mermaid
                      "Life is short, and we have but little time to gladden the hearts of those who travel with us; so let us be swift to love, and make haste to be kind."
                      
-Henri Amiel

                      Comment


                        #26
                        DonnaD you are such a trooper! I admire your strength. It is hard to get radiation 5 days a week, that drive is going to be tough. My friend's dad stayed in a extended stay apartment during his radiation which was an hour away. He and his wife stayed together and went home on he weekends. I would guess your hospital my offer something too. It really made his course easier. I was lucky, I only had to drive ten minutes away. Good luck!

                        Comment


                          #27
                          Originally posted by Justsayyes View Post
                          DonnaD you are such a trooper! I admire your strength. It is hard to get radiation 5 days a week, that drive is going to be tough. My friend's dad stayed in a extended stay apartment during his radiation which was an hour away. He and his wife stayed together and went home on he weekends. I would guess your hospital my offer something too. It really made his course easier. I was lucky, I only had to drive ten minutes away. Good luck!
                          I mean the apartment was offered by the hospital during treatment, their home was an hour away from the hospital.

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                            #28
                            Today was my first radiation, yesterday was x-rays. I don't drive anymore which makes it a pain but today, home-home was just 2 1/2 hours. Already learned some tricks. - Time of day travel makes a big difference (Duh). But what I found is that the time of your appointment doesn't matter (you should try to stick with similar times between treatments). The way it works here - I think they have 4 different radiation rooms. You always get the same room. They give you an appointment but that doesn't matter. The waiting room is people for all the machines. When you come in you just swipe your card and that puts you next on line for your room. No one asks you when your appointment is for like people do when you're waiting on line for the ear doctor and people hope their appointment is before yours. They gave me bad times for my appointments but I'll just go whatever time is good for me (and my drivers). DH can take me a lot but my kids drive too and they'll fill in. It's only three weeks - Right?

                            My neuro has been avoiding me. I want to go back to tysabri and the oncologist says no problem but the neuro is at a lost...
                            Dx 1/86 at age 23
                            Copaxone 1993 - 2011 (except when I was pregnant or nursing)
                            Tysabri - 2011 - present

                            Comment


                              #29
                              Only three weeks? Mine was 39 treatments, ended up going into the 7th week. Good for you! Hang in there, you have a great attitude.

                              Comment


                                #30
                                donna,
                                so glad you're doing this well with all the treatments!
                                sorry i've not seen your posts until today. i'm in lala land with migraine headaches all the time!

                                i agree with mermaid, take it one day at a time. be thankful that you're doing so well.

                                worrying just robs us of joy today!

                                take care & God bless ya!
                                "All things are possible for those who believe." Jesus

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