Multiple Sclerosis and Breast Cancer

Stanzie

3jaysmom- good to hear from you but sorry to hear about all the mrsa that is very scary. I'm curious why you arn't on any of the meds? I'll admit I am not anywhere near as good about taking my shots as I should and it does worry me but sometimes I can't handle the pain of the shots or my skin is so bruised, numb, frostbit and sore I just can't do it.

I don't think anyone deserves any of these diseases but I keep thinking hopefully then this will be it and I can be as "healthy" as I am for a while... at least I hope that will be the case...

3jaysmom

hey stanzie..yeah, this time i really am scared. they cant seem to kill this strain.im guessing another hospital visit may be coming. i chose not to take any meds for ms, because it has been so good, for so long..not ever in remission, but with one pain pill a daY, AND IF I DIDNT OVER DO, I WAS FINE. WALK WW/CANE, OR WALKER , AND HAVE ELECTRIC CHAIR. BUT, THE TRUCK WE HAD TO TRANSPORT THE CHAIR DIED, SO, WE'VE BEGUN LOOKING.NEURO SAYS NOW ISNt sorry for caps the time to try drugs. wouldnt know what ses were from ms drug..until chemo, i handled all the ms stuff pretty well. chemo , specifically neulasta shot, and taxotere, woke the ms up, and for now, they changed my diag. from rr, to 2ndary progressive, and THATS not good. have to get rid of mrsa before it gets rid of me!! i was so surprized that there are so many of us with ms here...helps to know youre not alone ..!  light and love, 3jaysmom

Stanzie

Please let us/me know what happens. I hope you don't have to go back in the hospital - if so I hope they can take extra precautions for your immune function. Seemes like that certainly wouldn't be too much to ask for especially with all you have been though.

Now I know you are worried going into secondary progressive ,however once you are finished with the treatments can't it go back to RR?Also I have been reading about some big breakthoughs  with the progressive ms - it is late so not thinking well but things that expand the blood vessels going into the brain and it has really helped. I know I get horrible pains in my legs when I lie down and finally my neurologist said try tilting your head and chin up and it actually helps. Pain is still there but it really tones it down so I can undersand how perhaps it is blood supply to the brain or at least part of it. 

3 Jay - take care and I'm really thinking about you!!!

3jaysmom

thanks so much, stanzie..im so glad this thread got started.. Maya2 actually emailed me when she saw it..i am blown away with how many of us are here..!!yes, it can change back to RR or, progress. chemo was an unknown, and has left its mark , big time.i don't regret anything ive done so far. my ENT is a mench, gave me carafate suspension..will take of side effects from antibiotics, and help not to get dabilitating diarehea sp. that's the only way id end up in hosp. again. gp will draw blood , mon. i'll be done right after that. then, im resting for awhile. still have pet scan and ultrasound of female stuff to go. but nothing life threatening, thank God, like Mrsa. my ent is wonderful,he treats me this way...ms 1st, cancer2nd, diabetes3ed. he cultures my ears and throat every month for bacterial infections..knowing that, you'd think it was ano brainer when i thought i had mrsa..anyway, will have to have discussion with onco about refusing me a blood stick. and, if God forbid, something goes wrong with this case, im going to small house near our house. much better care..they know me. onco said to go to big regional hosp. w/ cancer ward; i ended up in telemetry ward  who can figure.?!! pray  this thing is finishd,and ill go on with life as it is. thank you for your prayers. it gets discouraging..you start excesizing, getting built up, and boom..to the beg. again..oh well, when wounds heal, i'll be walking in the pool again... ,  light and love,   3jaysmom

beckward

Just like most of you, I was dx with MS first (2006) and then BC a few years later (ILC, bilat, no chemo, or rads)   I'm on Copaxone and doing well.  There has to be a link, or is it that we are all women and these are women's diseases.

My question is...tamox.  I declined to take it because it can open the door to uterine cancer.  I'm scared to death that the Copaxone will invite it in!  It's been two years since my surgery.  I have another lump in origin. location and ultrasound is inconclusive.  Will look at it again in 3 wks.

Should I start the tamox. and risk uterine cancer or fly without the net.  Anyone have experience with Copaxone and tamox.? 

DanielleSurvivorSince03-09

I'm taking Tamoxifen now and must admit I do worry about the uterine cancer risk, however I've read and been told by my oncologist that the risk of breast cancer recurrence is much higher than the risk of uterine cancer so I'm taking it.  But I only had a lumpectomy so I'm sure the risk for recurrence is higher than if I had a bilat mast.  I have actually been thinking about an elective hysterectomy to calm my hypochondriac nerves down a bit.  I had a BRCA1 mutation of "uncertain significance", which has me worried and constantly thinking every little weird feeling is something new.  I struggled with fertility for years before getting cancer.  My husband and I adopted a baby boy in November and likely won't ever get pregnant since we'll probably just adopt again.

beckward

Danielle,

In answer to your Aug 11 post, I had optic neuritis and numbness in my right arm as initial symptoms.  Looking back, now I realize that I'd had vision problems in the same eye before.

It took 3 opthalmologists and 2 neurologists before someone would take the eye/arm thing seriously.  Then it was just a matter of the MRI and spinal tap.  So it took around 3-4 months for a diagnosis.  That was 4 years ago, and I am fabulous right now; no symptoms.  I've had a hard time convincing my OB that an oopherectomy (love that word!) is what I need to get rid of the estrogen.  Meanwhile...I'm waiting for menopause to calm things down (I'm 50).

My question...do many of you share your health issues with other people?  It seems incredible that we are dealing with these two things...and look so good sometimes.  I don't share because I don't think anyone will believe me!

Beth 

3jaysmom

hey Beth, ive had MS dx. for 20 yrs.,  and use "adaaptive devices" to get around. so, most ple will ask since "i look so good" what's wrong? since the cancer thing, they think i'll be off the cane, walker, etc. thoose who dont know me. those that do, i've told. im in no way ashamed of using whatever i need to, to go where i want to go. my problem is, my truck died, it was just too old. it limits where i can go alone, cause i have a hoverround i used to put in the back. my cars too little, even for the back drive up thing, i think were going to a hitch guy next wk. to find out. otherwise, my DH just pushes me around the flea mkt., malls, etc. since getting cancer, i havent felt like going out too much, so tha works out. i dont take any of the drugs.. i was "too good" s/e wise to take them. most say you'll be in bed 3,4 days, and i was up and ABOUT. RIGHT NOW, I HAVE SO MAny s/e's from chemo, neuropathy, lymphedema,some digestive problems, that theey wouldnt introduce an ms drug anyway. im really ok. if things calm down in this yr. i might consider tsbari, or copaxone. ive heard good things about both. good to see there are so many of us... my onco was clueless about ms and how it wwould effect chemo, etc.. anyone has a onco who "gets it i must say, i went for radiation interview. the woman was totally cool, knew all about ms. they do rads differently w/someone that has ms or so she said. the 2nd interview they devcided i didnt need rads, because i had so much chemo. i finished chemo on my 22nd session, nov. last year.. it was a lot, but had a real aggresive caNCER. SO, MY CHOICE..A DBLMX. THEN, CHEMO. THATS MY STORY, AND I'M STCKING TO IT...

Stanzie

I think it is so interesting mentioning MS to doctors other than a neurologist and they all seem to back away saying, oh I don't know much about that..... I can't think of many other diseases doctors do this so what is it with MS I wonder? Is it because everyone's MS is so different?

beckward

Stanzie,

Sounds like you went for the same plan as me...surgery, but no rads or chemo.  My question...did you do the Oncotype DX.  You didn't mention your stage, but if it was Stage I, wondered if you did it.  My Oncotype was a 5, which is really great....but since I'm on Copaxone, I'm not sure I can make the same assumptions of recurrence rate as others.  My recurrence rate right now is 14%.  could had made it 11% by taking Tamox., but as I said, Tamox. scares me silly.

As you said, we have to pay really close attention to what our bodies say..

Did you get reconstruction with the BMX?

Beth 

3jaysmom

it is so great to see you all here!! when i started talking to stanzie, i thought id found gold ( I Did, stanzie) but how lucky are we to have others like us? the probability of other women with ms and bc is not very high, i've been told, yet, here we all are!! I know i have to keep in mind my ms first, before all my other"comorbidities" one which is BC. my ent, who is my unofficial infectious disease DR..considers me, cherie, then who has MS, cancer, diabetes, and stroke problems with blood flow problems oif the brain... he's the only ?DR. in what 7, now who GETS it. because our immune systems are so 9veractive, and they attatck the good stuff, not the bad.. i dont run fevers, my temp is normally 95.7; i run to bacterial infact. real easy.. none of the medical team GETS it, but him. he's treated me for psuedemonis, which i understand is rare, except in the aids community.He cultures my throat, ears, and nose every month. that's what i have to do to stay well...what a pin in the you know what 1on he other hand, im lucky he's there!!  good to see you all   light and love, 3jays

3jaysmom

it's so great to see you all on this thread. i hope we';ll stay active on it, we do have a complication others dont have.youre right, staanzie, when i say i have ms, they step back, and say WELL, i dont deal with that.. a neurologist will help you with that..hey, jack, it's not catchy, you don't need to cringe awayy!!for me, with chemo, the ac/ whatever was the worst because the neulasta shot you get the next day HARVESTS & BUILS white count cells.. i literally almost died from that drug. twice in hosp. cause 1st chem dr. said..That's impossible" only ple with sickle cell have that reaction.. so, after the 2nd trip, same reaction, i switched oncos..that was a trip! no one apparently switches horses mid stream.. im convinced the 1st dr. wouldve killed me.. anyway, after that , taxotere seemed like a breeze. left me w/ neuropathy in hannds, feet. would've couldve slowed down w/ tax. but it occurred months after i was finished. anyway, found out you can only take AC whatever..once in your life, so even if i have a reoccurence, i never have to do THAT again!! i also sorry about caps, didnt notice,anyway, i opted out of tamoxifin, but am doing natural ALS now, with  fingers crossed. see you all soon,    light nad love, 3jaysmom

3jaysmom

hi guys, sorry for the bold print on my last post. going to delete soon.. are you having trouble w ms after chemo? the last surgery/ infection kicked my butt but good  lol and, now my perfected gait of past is history for now. weak, and using walker. its all ms now.will have to find a neurologist soon i think. am starting excersice first, and we'll see. do you guys not have concerns with ms at all? i never see anyone hear .

momof3sofar

Hello everyone, I'm new to this board and to MS and BC! 

 Last June my arm/hand went numb and I thought it was a pinched nerve, infact the doctor actually told me he wished it was just a pinched nerve. He felt so bad to have to tell me.  I was diagnosed in Aug of 2009 after a series of MRI's and a spinal tap (from He77, needed the blood patch from the headache). I put off my yearly mammogram last year because, well I'm pretty sure it was just fear of finding anything ELSE wrong.  So this year I scheduled it and it came back with microcalcifications so I went back for an additional mammogram then had the sterostastic biopsy on Monday and they called Tuesday with talk of DCIS.  I go tomorrow to talk to the "team" of doctors and see what they say/reccomend to me.  I'm hoping to find out more about size, grade, etc then too.

Oh, and I am 43 years old have a 21 year old and 18 year old bio kids and a 6 year old adopted daughter, we were in the process to begin the adoption process again when all of this hit the fan.  I'm not really sure where we will go from here.

Dawn

3jaysmom

DAWN, welcome. it seems i am the only one on th thread lately, but others may appear since ther's a newcomer.. i'm so sorry you got the "double whammy that we all have here. at least they started a thread where we all can talk to others in the know.. what r you doing for m.s.? i've been dx for over 20 yrs.. relapse remitting. since chemo; its reactivated with a vengeance. i did so well before bc breast cancer that i've not been on meds for ms.we will soon go to ms centre at Baptist Hosp. in miami, for reevauation. looks like it may have jumped to secondary progressive, which was ALWAYS the fear with me on no meds. one i was ok with, but really increased with chemo. but, all things considered, i've done ok, and am hapy with all my choices. everyone here has had to make different choices, as per the tx. treatmt for bc/ i had to do many tx. of chemo (22) for a fast growing aggressive cancer, which was in one node. so, the chemo included a white blood cwll accelerator; which caused he%% with the ms. then, quite a few tx. w/ taxol, which woke up ms for sure..its pretty active now, im using ms walker, which i have not had to for many years. the stress of tx. for bc can cause havoc, but not anything i havent been able to handle with some patience. i also developed neuropathy, but that can happen to anyone; we're just more open, because of the hyper immune system. so, i for sure, have more hand control problems. again, if i slow down and concentrate, nothing i can't handle. im 60, and also had DCIS.had double bilateral masectomy DBLMX..in my case, radical..which means to the chest wall, and all tissue and muscle taken. radicals are not done much anymore, but i drew the short straw...anyway, the point is, even with all of that; my prognosis was very good. i'm ayr out from surgery, and will be 1 yr out from chemo in nov..and have had 2 cat scans for dide effects (se's) and have been cancer free in both Thank You, God..so, you can do this, no matter what the complications  .PM (private message) me if and when you want to talk to me. also, ck your home for a message from me. will be right beside you the whole way, if you'd like.. light and love, 3jaysmom

momof3sofar

Thank you for the welcome!

Right now I'm on Rebif for my MS along with Cymbalta and Baclofen (20 mg 4x day)

I had my team meetings today to discuss options.  The problem was I don't have all my information available yet.  They sent my HER2 in for further analysis since it came back a 2A or some nonspecific number.  I have my MRI on Monday so they don't have all the answers for how far it has or has not effected.  I also had blood drawn for BRAC today since my mom died of ovarian cancer at 62 and I have an aunt who survived uterian cancer.  So far everyone today seemed confident of DCIS but won't recomend treatment until we have all the pieces to the puzzle.  I am just all too confused right now to even think about it anymore.  I had my biopsy just on Monday and today they were asking which surgery I would prefer if I were told to choose today.  Sheesh!!

I'll go check my messages now!  Thanks again for responding! 

Dawn

Stanzie

Dawn - I'm so sorry you are joining the group or groups as it is. I just turned 50 in Aug. I was diagnosed with DCIS and LCIS last Feb. had surgery in March. I was diagnosed with MS in 2002 but the Doc thinks I've had it since I was around 12 - all sorts of odd things but nothing to pinpont. I've been on Copoxone and so far so good! I have some minor symptoms in the scheme of things so I'm grateful. Fatigue is my biggest problem that and pain in my legs when I lie down. Wish I was a horse and could sleep standing up, would be so much easier.

 Anyway, you are just in the beginning and I know you have tons of info being thrown at you and at the same time waiting for what seems like forever to know more. Hang in there - it will be easier once you know what all you are dealing with and what your options are. This whole forum is amazing with tons of support, good information and no matter what you have there is someone here who will have gone through it and can help. 

I loved my BS and he was kind and lovely. He told me all my options but when I asked how on earth I was supposed to choose - I knew I would do reconstructions- he told me once I found a PS who I was comfortable with I would know what I wanted to do. And it did work out just like that for me and even though I hated and still hate that I had to make any of the decisons I do think I made what was best for me. 

After I talked to my BS I went to my neurologist and asked what his advice was and for me (everyone is different as you probably know MS affects everyone so differently) he told me not to let having MS come into play as far as what my decisions would be. The only time it did come into play was my BS said not to do the DIEP as losing abdominal muscles would be hard later for balance and stability in life and my onc. thought the risks outweighed the benefits of the .... oh shoot the inhibitor drugs you take if you are in menopause, tired and can't think of the correct name. Anyway, I opted for more surgery so I wouldn't have to do rads or chemo. as I know those are hard on everyone but for a lot of people seems like it hits people with MS harder but I'd recommend talking to your neurologist as he/she will know best about your situation. 

I wish you the best and please ask away with anything we can possibly help you with! 

3jaysmom

hey stanzie, good to see you here, for me, more surgery was worse w/ ms., just cause i always end up with a raaging staph infetion, but its all so different for all of us. for me, cancer beats ms everyday, but it certainly is a big consideration for tx. choices.. light and love, 3jaysmom

momof3sofar

I'm still trying to understand my options even though all test results are not in.  I am reading the book they sent me and in it they say that patients with certain diseases are not candidants for reconscructive surgery and one of the conditions mentioned is MS...does anyone know if this is true?  I have been told I can have breast concerving surgery or a full MX the choice is mine (baring any further information from the MRI).

Dawn

3jaysmom

im not the one with answrs. no recon. for me; i have multiple issues health wise.refer 2 stanzie, who had recon. try and find a platic surgeon, after you talk to breast surgeon.(bs and p s)they both will tell you which way to go , when they have your results they will know what can/has to be done.light and love..3js

3jaysmom

im not the one with answrs. no recon. for me; i have multiple issues health wise.refer 2 stanzie, who had recon. try and find a platic surgeon, after you talk to breast surgeon.(bs and p s)they both will tell you which way to go , when they have your results they will know what can/has to be done.light and love..3js

bru29

Hi to all,

I have RRMS-Fibro- and Lupus that are my main concern with BC..I had a Bilateral Mastectomy 4 weeks ago, recovery very slow..I also got Necrosis on the right side and still have an open wound.. I go bsck the end of October to have a repair done on my left side..Today I feel so sick and weak..I am hoping I can recover enough to go on my stitching weekend middle of October.My origanal dx. was stage 2-3 breast cancer left side, I had 2 Lumpectomys and to many biopsies Radiation for 7 weeks..I then decided enough...Thus the Mastectomy..I am 63 and hoping to feel better soon.

Thanks for letting me share:)

I

3jaysmom

glad your  here, bru, if your not new, new to me. ive had many setbacks, many infections, se's. just had cleanu up surgery from 1st durgery, mrsa  again... they just dont get ms lets infections run wild.. give time time. im back to square ne, no energy, reserve, or not. i built myself everytime, and will again, , oplease go easy on yourself, let strength build up.. but, keep moving, if only a little. i find you do lose it, if you dont use it (if only slowly, a little bit at a time)

IC10021

hi, very "special" people...

Re vitamin ya, my MS doc told me to take 2000 units vitamin D daily for my MS when I was diagnosed four years ago. I keep doing that.

I am here prior to my third  surgery on my R breast. Interventions arose as a result of frequent exams and tests I get as a high-risk patient in a high-surveillance program in NYC. (Thirty years ago, my premenopausal mom (age 49) had a mastectomy -- two years later, another for a diff type of br cancer. She had no chemo, no rad and followed those 5 years later w double reconstruction. Now a buxom 80, she still gets a kick from showing them off!)

As high-risk, I am given a br sonog and/or a br mri and/or a mamo every 6 months, depending. I am premenopausal at almost 53. I have a 16-yo daughter and I tell her it will be cured or preventable when she is my age.  

3yrs ago, a core biop & localization & excision produced LCIS. It was relatively simple & easy & left a tidy lil now hard-to-find scar around the border of my nipple.

This year not so simple. In June 2010 MRI picked up likely "calcifications" confirmed by core biopsy. Waited till after summer for second localization and excision procedure after which  promptly developed a br infection treated w cefalexin 7days. Before entirely in the clear of that, doc talked to me about "surprising finding" in the margins -- turned out DCIS & tiny, tiny (1.1mm) invasive br ca later tested as er+ pr+ & Her2-. Not entirely unexpected; very early. Would never be seen on an MRI/sono/mamo. They're going back in.

This week, new blood work; next week mapping lymph nodes to re-excise w profilactic antibiotics in surgery. Hopes for getting clear margins and clear nodes (otherwise, a different discussion). Hope to keep it at stage 1.

After that, to see the oncologist (same one who treated my bi-lat mom 30 years ago). Talk is of tamoxifen and rad. First, though, I will have to re-do my uterine sonogram when just after my next period (need thin walls to see better). Currently, a small issue showing there that may clear on its own by next month or perhaps will need a D&C. This because my gyn will probably want me to have a "squeeky-clean" uterine sonogram before I start tamoxifen. Gives her a "baseline" to compare any changes after I start tamox.

Thanks for all your posts. Some are very funny, just because they reflect the same  overwhelming and outrageous stuff that comes up for me and sends me reeling. People just don't "get it", like the extreme fatigue when the weather changes. I am sorry esp for the moms w young babies and their little ones. Sad face. :-(

BTW, my MS neurologist said that there are no issues re my MS treatment (copax) that need adjustment or review prior to my cancer treatment. best and good luck to everyone: -- Irene

3jaysmom

hi  irene, i don't know if you're new, or iv'e just missed you here. 20 yrs. w/ms, ni treatmt yet. relapse remitting that they think may be primary progressive now, from chemo. will be going for a new eval. next month. copaxone is the only drug i will agree to, and it might be too late to take now. ohwell, i knew i was "rolling the dice" with neulasta, which i had to take to get ac?cytoxin. using wheelchair again for the first time in 5 yrs..you're right, tho, lest you have it, ya dont get it. i ended up with MRSA w/ both my surgeries, docs wouldnt believe i didnt run temps till puss was running out. am doing better and better, but still weak 6 mos later. hope all goes well for you. you sound like the're more on the ball where your going. please let us "special" ple know how you're doing    light and love,    3jaysmom

Stanzie

momof3 - when they said MS patients can't do some recon, my doc said he would never do the tram flap on MS patients as they need their core muscles later for balance and such. But otherwise no one told me of any complications. I had the latissimus dorsi surgery recon.

momof3sofar

That is what I was told yesterday as well when I met with the new PS.  He is going to do DIEP unless for some reason he can't find a viable vein to use.  He is afraid of leaving me under for longer than necessary.  He said he would then do a free TRAM and spare as much of the muscle as he could for core strength later.  I do feel confident that he will aim for the DIEP though.  He just wanted me to know upfront.  My BMX is scheduled for 11-10.

I went off my Rebif a few weeks ago and I swear I have never felt better. I didn't realize I was living in such a fog while on it, it came on so slowly but after a year of being on it and now stopping I can't believe the difference.  I lost my perscription funding assistance and knew there was no way I could pay for that and all the copays with my cancer treatments so I quit.  They made me talk to their safety department because I was diagnosed with a "serious" disease since beginning it.  Makes me wonder.....

Y'all are definately right, unless you get it (MS) you will NEVER get it!

IC10021

Thank you all, again for your postings and 3jays for your reply.

A few days ago, I had lunch w some high-school classmates with whom I am celebrating 35 year reunion soon. Nice.

Later in the day, at my intro to "nuclear medicine", I was handed a card that I could use to explain my detectable radioactivity to anyone who asked (a must-have in NYC) and told to stay away from small babies and pregnant ladies for a few days. Hummmm.

Yesterday evening, after R br surgery I was peeing bright blue dye (used to help locate lymph nodes for biopsy). Very different.

Today, during my visit to urgent care, I got purple dots in circles on my R br marking a post-surgical infection was likely arising, for which I am now taking antibiotics (that will likely set me up for a yeast infection later in the week, for which I will take w a single-dose med to treat.)   

Busy. Home. Preparing for The Horizontal.

kisses -- Irene

3jaysmom

hi guys, i stop by once inawhile, just to keep thread going, and check "on the chickens" see how we all are doing on our journey.. for me, i'm going to float on the river of denial for a little while longer. the drs. i see want me to go for another eval, they think the dx is changed. if it has, i don't see the sense of hearing it. its' going to be way bad, and not much they can do.. i've had it so long, i don't even know if opaxone would work, and thats the only one i'mwilling to take..

momof3sofar

Goodluck 3Jaysmom!!!  I love that river name denial, it is my favorite hang out!

I'm having my BMX tomorrow with DIEP.  Hopeing and praying that none of this does a number on my MS. 

Dawn