Multiple Sclerosis and Breast Cancer

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  • 3jaysmom
    3jaysmom Member Posts: 4,266
    edited May 2013

    this is for samboro: ,all 3 girls including me, had breat cancer, yet when i had the genetic testing, it was negative. so go figure!!

      I was the only one out of us 3 gradma, mom and sister.. 4 of us.. that had a bmx, and i am soo happy, when they did the bmx, they found both breasts were involved, and the cancer was plastered on my chest wall!!

      I've had a tough time with chemo, because i have had MS for over 20 yrs..

      All that said, I learned later that a Bmx doesn't garentee any better odds then a lumopectomy.. so, it's a real personal discusioon. one you need to think carefully before deciding, if your'e not in crisis now..

     I wish you well, and if you want any info, etc, you can pm me, as i'm not here a lot of the time, but will get an email alert if someone sends me a pm.. 3jays

  • AthenaB
    AthenaB Member Posts: 4
    edited June 2013

    hello everyone - i am so glad that i found this forum. My mom has had progressive MS for 25 years and yesterday was just diagnosed with stage 4 BC. It has spread to the sternun, lymph nodes and 1 lung.

    Do any of you have the same story and similar? So i can share with her some words of hope as in not being the only one out there with this

  • Beckers
    Beckers Member Posts: 1,883
    edited June 2013

    AthenaB, I believe there is only a handful of us with MS (at least on this thread) and the thread has been pretty quiet recently. There is a thread for those with family members who are stage IV. I'm sure you will find a lot of support there. FYI, Its my understanding the stage IV threads are exclusive to the patient with stage IV breast cancer. It is definitely A LOT to digest in the beginning. I have wondered if there is any correlation between MS and breast cancer or MS therapies causing breast cancer. My neurological said there was an actual study done showing decreased rates of breast cancer for those on Avonex. That was interesting. I wish you and your Mom the best as you move forward.

  • Beckers
    Beckers Member Posts: 1,883
    edited June 2013

    Silly autocorrect..."neurologist"

  • AthenaB
    AthenaB Member Posts: 4
    edited June 2013

    thank you so much for your kind words - ill check out the other threads. I wish you the best and to be strong.

  • Beckers
    Beckers Member Posts: 1,883
    edited June 2013

    Thank you Athena.

  • Live2Laugh2Love
    Live2Laugh2Love Member Posts: 39
    edited July 2013

    I was diagnosed with Breast Cancer a year ago, so I am just finishing up Herceptin. I think I have MS, I have been having alot of trouble with my muscles, fatigue, weakness, numbness,balance, tight band feeling in my muscles. All of my muscles have had me 100% paralized for about 15 min andI my husband call 911. I thought I was having a stroke. Then I looked up muscle disorders and it showed MS and when I read it, all of my symptoms fit with MS. I will get a spinal tap inthe last 2 wks in August. I am so scared. 

  • Beckers
    Beckers Member Posts: 1,883
    edited July 2013

    Live2laugh, I am so sorry you are going through this. MS is very scary. It's hard to imagine but I am used to it. I was diagnosed in 1997 with extreme symptoms of vision disturbances such as double vision, paralyzed facial muscles, slurred speech, foot drop., horrible fatigue. I have mini flare ups, a few big attacks but have learned to navigate around it. Over time it got better. I am having some symptoms again and just had an MRI. I too was diagnosed officially after a spinal tap. it is hard to diagnose. I wasn't symptomatic at the time I had the spinal tap and it still showed positive so I hope you will know for sure very soon. Hang in there.

  • chef127
    chef127 Member Posts: 891
    edited July 2013

    Live2Love2Laugh,

    So sorry your going through this after all the tx you've endured. I know this sounds insensative but I hope your sysmptoms are related to your BC tx. BC SUX but at least there are options to hopefully "CURE" you?? MS has no cure. There are only disease modifying drugs that hopefully are slowing down the progression. I managed to be very active and phys tuff REALLY, for many years w the MS, I didn't even know I had it for a long time, which is the case for many MSers. Mine was accidently found via MRI in 2001. no spinal tap.

    In 2009 I had a relapse, my first severe attack with double vision, vertigo, and nystagmus. I ended up w permanent damage to my eyes and am now disabled.

    BC sux, but for me MS sux more. Let us know how it goes.

    I hope your spinal tap goes well and nothing is found in your fluid!

    Live Love Laugh......You have the right idea.

    xox............Maureen

  • Live2Laugh2Love
    Live2Laugh2Love Member Posts: 39
    edited July 2013

    Thank-you so much for your info. its so nice to talk to people that get it. My doctor appt. has been moved up to August 1st. I had a episode in the cancer center, so they called the doctor and moved the appt. sooner. I have been having trouble spelling things right,so if words are mis-spelled thats why. Plus I will blank out in a conversation, I can't find the words.

    * All we have to decide is what to do with the time that is given to us * Gandalf the Gray

  • Beckers
    Beckers Member Posts: 1,883
    edited July 2013

    Chef, I had the same exact attack as your 2009. What damage were you left with if you don't mind me asking. So scary!

  • chef127
    chef127 Member Posts: 891
    edited July 2013

    Hello Beckers,

    The attack itself was scary.  It started with double vision and soon the nystagmus (rapid eye movements) and flashing light images, like a disco ball was following me. I forget the tech term but it was like an LSD trip flashback!The double vision got really bad, everything was distorted, but if I wore an eye patch I  could go to work. I went to a opthamoligist and he gave me a PRISM lense and it immediatly corrected the DV. Til that point the MS barely showed. I worked in a hot kitchen for 12 hours a day as a chef and was promoted to Food Service Directer, sitting on my butt. I did much better w the physical stress as a chef than I did with the mental stress as FSD?????????? I was in the middle of a class to get certified when the attack started. I blame the stress for my attack.

    Anyway, I was left w slight double vision which the prism lense corrects, nystagmus which makes walking difficult b/c I cannot focus my sight on on my path, everything jumps around, vertigo and dizzyness, and increased fatigue and my balance is way off. Oh lets not under rate the brain fog and cognitive issues.

    That is the ONLY severe attack I had in the 28 years of MS.....maybe longer? (dx'ed 2001) My neuro says I'm now in the spms phase. My BC dx is so  much easier to deal with.

    I hope you stay healthy and mobile............Watch that STRESS!

    xox.....maureen

  • Beckers
    Beckers Member Posts: 1,883
    edited July 2013

    Oh lord Maureen. I had the same EXACT visual symptoms and you describe it perfectly! Wow! LSD trip is right. I told people at the time that I would rather be in the dark blind than be left like that. I also had facial twitching for months and the nystagmus and twitching would rear it's ugly head about once a year for quite a few years. I too have horrible fatigue and brain fog. I feel like tamoxifen may flare things up a bit. You are now "secondary progressive"?? How do they know??

  • chef127
    chef127 Member Posts: 891
    edited July 2013

    That relapse was the scariest thing that had happened to me by far. When it did finally settle down, I was left with an uneasy feeling. I went to work everyay but I soon realized "I aint the girl I used to be." I went out on disability thinking I'd be back to my over achieving, workaholic self. Never happened. It was  life changing. That was 4 years ago and I'm still trying to shake it. Never had any real attacks before that one and none since. Hence the SPMS dx. perhaps it always was? My first neuro was amazed at my productivity and activity. I was dx'ed at first glance but since I had no ins he said nothing. ASShole. Had an unrelated MRI several years later and the Dx of MS. I always believed it was a benign form of ms.

    Anyway, RRMS usually goes into the SPMS when there are no relapses but a slow progression of disability. Boy is mine slow. I restarted the copaxone but I'm not sure it is the right one for me, all the others come with alot of side effects. I was worried that it was suppressing my immune system which is counter productive for BC. The neuro called it an immune modulator, whatever that means.

    How is the tamox working out for you? I don't take the AI's. Onco said I'm taking a big chance with my head in the sand..........xoxMaureen

    OH, I see you had the DIEP surgery. My PS would not do a DIEP for me because of the balance issues from MS. Did it effect your balance in a negative way? A tummy tuck would have gotten me back into my jeans.............So superficial of me.

  • Beckers
    Beckers Member Posts: 1,883
    edited July 2013

    Hi Chef,



    Wow, so sorry the MS took a turn. I don't notice any trouble with balance since DIEP. He took a small strip of muscle on each side. So far so good. Tummy tuck has been disappointing actually as it is not flat. :-(



    I too am concerned about ms drugs. Waiting for MRI results and then will probably be going on again.



    I'd better try to sleep. Talk to you soon.

  • Live2Laugh2Love
    Live2Laugh2Love Member Posts: 39
    edited August 2013

    I had my brain MRI done and there was two area's of white matter. That was all I was told so far. What does that mean? Is the white matter where my brain had trama or not enough blood? I have more testing to do this month, waiting for anwers is so hard. Anything you know would be helpful.

  • chef127
    chef127 Member Posts: 891
    edited August 2013

    White matter in MS is usually associated with MS lesions. I can't believe the dr didn't say anything else yet. Are they new, are they active. Have You been dx'ed with MS yet? Was this your first MRI? My MS was immediatly dx'd with my first MRI and no further testing.

    Good Luck w the MRI results..........xox maureen

  • Live2Laugh2Love
    Live2Laugh2Love Member Posts: 39
    edited August 2013

    I don't know if they are new and active. That was my first MRI. It feels like its active to me. He wants me to do more testing august 15th, so they can simulate my brain in the different areas and see my brains activity. Then I will do another test on sept. 5th with my balance and numbness. I hate being in the dark.

  • chef127
    chef127 Member Posts: 891
    edited August 2013

    I think the most definitive test for MS is a spinal tap. they check for certain protiens in the fluid. Many MSer's spend a lot of time and go through a lot of testing before getting thier Dx. Why not go right to the spinal tap?????????

    When I was dx'ed it was upsetting but I was relieved to know I wasn't crazy. some of the symptoms are crazy. I hope you soon get answers..............but MS really SUX. xox

  • Beckers
    Beckers Member Posts: 1,883
    edited August 2013

    Hi there. I had an MRI with contrast. (still waiting to get results) the contrast will tell if any lesions are active vs. old. The "white matter" is actually part of the brain. Maybe that's where the lesions are. The spinal tap is also how MS was confirmed in my case as well. I too was relieved to know what was wrong. Was still a hard pill to swallow.

  • Sunny14
    Sunny14 Member Posts: 1
    edited August 2013

    Hi just found this forum

    If it is any help I have MS and Breast cancer. I am 56 yrs old



    I was diagnosed with MS in 1984. It's been quite a long difficult journey and now I can walk very little and use a wheelchair. That said, I have had a good full life with family, friends, work and many interests. You adapt to the different challenges and get on with it.

    In oct 2012 I was diagnosed with breast cancer. I couldn't believe it. I was very fearful of treatment and how I would cope with it all. I had a mastectomy then rads. The oncologist was concerned about chemo as she thought it would be too much. She consulted my neurologist who said go ahead she will be fine and I was.

    I am not saying it was a walk in the park but I got through it and it wasn't too awful. I am now on hormone therapy and finding that quite difficult but I hope I can cope with it.



    So really I just wanted to say if you have ms and get bc you will hopefully be able to deal with it.

  • chef127
    chef127 Member Posts: 891
    edited August 2013

    Hello Sunny14,

    Welcome to the wonderful world of BC and MS.My BC journey has been pretty easy. No chemo No hormonals. Don't want to add to the MS. Maybe playing with fire...

    MS is alot rougher. I had my first symptom in 1985 but it didn't effect my life at all. I was accidentily Dx'ed in 2001 via MRI for a problem with my ear. Nothing wrong with my earSurprised I was great till 4 years ago, had an attack that left me disabled over night. I've been concidering getting a scooter......or a wheelchair but I'm not ready to give in, yet.

    For me BC has been a mental stress  and the unpredictable MS is a physical one. You seem to be coping quite wellSmile

    Hoping the hormonal tx is easy on you................xox Maureen

  • Live2Laugh2Love
    Live2Laugh2Love Member Posts: 39
    edited August 2013

    Since that 1st episode, I have signs all the time. The muscles twitch in my face alot,and a little in legs and arms. Brain fog have a hard time spelling, and finding words when talking. Very forgetful, lots of fatigue.Numbness and tingling, off and on with balance issues. Sometimes I get starry vision.

    Chef 127- I hope that your doing better that sounds so scary. I hope that I don't have MS but its not looking very good on my end, I see the oncologist to day and I will see if I can get some more info. on my MRI.

    Beckers- I had the MRI with the contrast to.

    Nice to meet everyone, thanks for your help.

  • Live2Laugh2Love
    Live2Laugh2Love Member Posts: 39
    edited August 2013

    I just got back from the doctor.  I have 3mm focus of hyperintense T2 FLAIR signal in the right frontal subcortical white matter and 4mm in the same area. Does anyone knows what that means? I am in another new world of the unknown.

  • Beckers
    Beckers Member Posts: 1,883
    edited August 2013

    Live, it sounds like you may have 2 small areas of active MS. :-( are you having symptoms right now?

  • Beckers
    Beckers Member Posts: 1,883
    edited August 2013

    Chef, were you told not to take antihormonals?? I am wondering if tamoxifen is making MS worse.

  • Live2Laugh2Love
    Live2Laugh2Love Member Posts: 39
    edited August 2013

    Yes, my face muscles twitch all the time, lots of fatigue,hard time focusing, all over headache, and numbness. 

  • Beckers
    Beckers Member Posts: 1,883
    edited August 2013

    Live, I too had the face muscles constant twitching...bad! It was after my first attack and every now and then but nothing like the beginning. Fatigue is horrid. Every damn day ofmy life. :-(

  • chef127
    chef127 Member Posts: 891
    edited August 2013

    Live2,

    Get a copy of your MRI report. good to have for future reference. I don't recall what mine stated re the size of the enhancements, I'll dig it up, but it did say probable MS, and I was symtom free? unless I accepted any symtoms as part of me. After the Dx I assumed I had a benign form of MS...til the one and only severe attack.Surprised

    There is a possiblity that the chemo you had is the cause of your symtoms?? Chemo is damaging. Chemo brain, neuropothy, either way it SUX.Do you know what your next tests for MS are? Good luck.

    My MS has always been PAIN FREE. Lucky me. I was advised to take arimidex. I chose not to because the anti hormonals are toooo powerful (effective for er+ BC) but I don't want to gamble with my sparce estrogene. MY choice. I take DIM etel and a herbal tea to balance the hormones. I wonder if the menopause contributed to that MS attack as well as the ER+ BC. The timing is close.  curious. I'd rather balance the hormones as opposed to enilating it??

  • Live2Laugh2Love
    Live2Laugh2Love Member Posts: 39
    edited August 2013

    I agree with you, I am glad you are pain free. They are going to look at my brain activity, and lots of blood tests. What is that test like? That test is on the 15th of this month.

    The fatigue is horrible for me to, sometimes its 3 times a day,and it will put me to sleep.

    I take DIM to, I hate taking alot of medican. I am suppose to go back to work sept. 1st . I think I will just work 2 days a week or extend my leave of absence.

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