Multiple Sclerosis and Breast Cancer

Very interesting information. Do get all those Vit. D levels checked as it can be toxic if too high. Mine was actually getting too high and had to cut back to 1,000 a day.

The only thing is that if the MS drugs like Copoxone are immune suppressents then should any of us on them be getting sick all the time? Or am I missing something? Does that mean it just hits something big like cancer? I am confused about this?

i haven't been here, in so long i went back to read, 1st..

   as far as my ms goes, im just accepting the little things going bad, that i see. they haven't changed greatly.. the hypothryoid is the one thing that has GOTTEN me.. by taking the peds dose, im able to take a thyroid med, but it has me bedridden, and affected my knees so badly, im not very strurdy on my legs much.. not driving, he*** this is worse than ms symptoms.. however, since there's a theory that the ms is actually attacking the thhyroid, it makes sense..

  im getting the "choking" thing again, and now, ive gained weight, which i couldn't afford to, in the first place.. i've started to increase the 3 of days i tske the tirosint, so im pretty well in bed 4 days a week, not walking well, with swollen eyes...

  of course, i keep praying for some divine intervention, and i do excersize everyday, to keep the spasticity at a min.. not such a good outlook right now. im hoping if i can get enough of the med in me, we can get the hypo under control, and Mange it... grrrrrrrrr.3jays

 LA1217 - You are so right...we MSers are tough people! (Although there are days that I feel pretty wimpy.)

I have been lurking on this site since my BC dx in Aug, 2011, but now I have come to a crossroads of BC and MS, and need to join in on the conversation. I have learned so much from this site and all of the wonderful contributers. Thanks, so much!!!

I was dx'd with RRMS in 2003. My neuro started me on Rebif injections, which I took for 4.5 years, when it stopped working for me. We then decided to try Tysabri infusions, which I had great success with - no problems at all - of course, being JC virus negative, I had a greatly reduced risk of PML. Due to other medical issues, I had a 4.5 month gap between going off Rebif and starting Tysabri, and had my first MS attack in many years. Luckily, it wasn't too bad. Tysabri actually minimized those recent symptoms, however it did not change my original symptoms. I started Tysabri Jan, 2008 and stopped Aug, 2011, when I was dx with IDC BC. I had a modified radical mastectomy in Sep, and started chemo tx in Oct. Luckily, my MS held stable during this crazy whirlwind of time. Only my mind was numb.

As we all too well know, there are good days/bad days with MS. I think this actually helped me get through BC chemo. There were bad days on DD AC, for sure, but on day #10, I was okay. Of course, I knew I only had so many more good days until I would start the next chemo cycle again. At least it was fairly predictable - unlike my MS symptoms! I did 4 cycles of DD AC, and then came DD Taxol. During my initial MO consult, he wasn't sure if I would have Taxol or Taxatere, and if the Taxol would be DD (every 2 weeks) or for 12 weeks, due to the peripheral neuropathy issues. Oh goody, more numbness and tingling! More than any BC tx issue, this one really made me nervous. My MO eventually decided on DD Taxol, with the possibility of switching to every week, if I had problems. I did have 'gumby legs' for the first few days, even having to use a walker, because my knees and ankles would just give out, but as I progressed through the days, this cleared up, and I made it through with no other major problems, except fatigue. Heck, I was already used to MS fatigue, so this chemo fatigue was just another annoyance. Luckily, I have great support at home, so had help when the fatigue wiped me out. I had my last DD Taxol last Wed - I'm done with chemo!!! 16 weeks seemed like an eternity at first, but it actually went by fast. I have a 3 week break, and then start 6 weeks of Rads. Then I'm DONE! I am Triple Negative and BRCA-, so there is nothing more for me, except monitoring and vigilence. So...it's back to my MS.

Okay - here is where the crossroads meet. BC took immediate attention, so I stopped Tysabri. My neuro said that chemo usually held MS at bay, so I should be alright during tx. It did exactly that. Chemo did seem to target my weaker areas - legs, especially -  but it doesn't seem to be permanent, as it gets better every day. I did develop neuropathy in my fingers and toes after the third Taxol, but I noticed this week that it seems to be fading a little each day. My MO had me take L-glutamine powder (15mg) twice a day, and that seems to be helping with the numbness/tingling. Hmm, I wonder if I should be taking that for the MS tingles? I'll ask my neuro next week.

I see my neurologist next week to discuss my MS tx plan after BC. I'm sure she will not put me back on Tysabri, and since the interferon stopped working, that's not an option, either. She did mention Copaxone, earlier. At this point, I'm not sure what I want. I am trying to research all the MS meds, and they all seem to be suspect for various cancers, although it is really hard to find hard evidence. Of course, anything that messes with the immune system, seems suspicious, to me. With Triple Neg's reputation of early recurrance (although I'm feeling fairly positive about my agressive BC tx knocking the hell out of this nasty critter), I don't want to take something that may encourage it. What to do, next?

So, after my long ramble...

Has anyone gone back on any MS tx, after BC tx? My neuro talked to some MS guru-researcher, and he recommended a 6 month space before any MS tx. Risky, but sensible?

Okay, I'm MS-tough. I can get through this, also. ~ Shar

Hi 3jays - so sorry to hear about your thyroid problems - isn't it always SOMETHING with MS??? Hopefully, the thyroid meds will 'catch up' your thyroid gland to more normal, and you'll feel so much better. My Mom & Dad were the Mutt & Jeff of thyroid...one was hyper and the other hypo. Luckily, the meds helped them both, but of course, they weren't dealing with MS. (That's my job!)

L-glutamine is an amino acid that occurs naturally in our bodies - in fact, it is the most abundant amino acid we have. I don't think it can harm us, and I can't imagine overdosing on it...Yuck! It is a little gritty, so dissolve it in something hot, like tea. Snapple peach tea was the only thing I could drink during AC chemo, and it was perfect warmed up in the microwave. The powder dissolved pretty much and was easy to drink down. You do have to take alot...3 heaping teaspoons, twice a day. I think it is working for me, and I trust my MO who told me about it. AND it's NATURAL! (well, as natural as processed powder can be). After all these crazy MS meds, natural sounds great!

Lucky for me, Neurontin (I take the generic, gabapentin) has held my "MS Hug" at bay. I get that terrible banding tightness and pain, like a bearhug that never ends. I don't know what I would do without it...probably lie in a fetal position all day, crying like a baby. 

I am also lucky, in that I am still mobile, although I wobble through my day, with balance problems. Taxol really messed with my legs, and AC really messed with my MS bladder. Even though I felt wretched some days, my MO said I was doing very well on chemo. Yeah, those are the moments when you question if he really IS an expert!!! I'll see what my neuro says next week - how much damage has been done. Even this morning, the neuropathy in my fingers and toes is less - there's HOPE! The MS neuropathy and the chemo-induced neuropathy feel different to me, although my docs might raise an eyebrow on that one.

3jays, you must be very sensitive to drugs/chemicals. I guess I'm just a tough old bird, because I seem to tolerate most well. Of course, as I type this, I'm sitting here with a bald head and face, so they did take their toll! 

I am suspicious of all the MS meds, also. I had no known BC in my family, and low risk factors, so the dx came as a real shock. My MO/Genetic Counselor sent my case for BRCA testing, due to questionable cancers in the family, so I then figured that my Polish/Czech heritage was the culprit. Nope - I'm BRCA-. So...now I'm back to questioning the MS meds. There needs to be investigation into this, but pharma will drag it's feet, until forced into action. There needs to be an outcry like the Tysabri/PML one that has stirred some action, although not enough. What really gets pharma's attention, is when their stock prices are threatened. Sad, but true.

Nice meeting you, 3jays. I hope other MSers will stop by. Having BC and MS is a challenge, but we can do it, together. Have a great weekend! ~ Shar 

Hello ladies, 

As much as I hate to be here, I'm glad to know I have a place where people can relate to the drama of BC and MS. I must say the MS dx was easier to handle than the BC. I've had MS since 1989 but wasn't dx'ed til 2002. I managed to work FT in a hot kitchen for years. I took the copaxone for about 5 years but gave it up because I was doing so well?????? I became disabled 3 years ago after a relapse that I never recovered from. It was like an LSD trip, strobe lights, double vision, and then severe fatigue...

I don't think I'll get back on the copax or any other immune supresant drug. BC requires a strong Immune sys. It's so hard to do the right thing because they are so conflicting. I've put the MS on hold til i figure out the BC. Does anyone know how to balance their lives between the MS and BC?

Stay well girls......................Maureen

Hi Maureen - working in a hot kitchen with MS??? And with all that stress??? Oh, how I admire you, girl!!! I'm a total wipeout when the temps rise - and they don't have to rise much.

Finding balance between MS and BC...that's my next adventure. I see my neurologist next week to try and figure out what to do next. I was doing so well for all those years, and then BC came along. I'm trying to stay positive that I'll continue to stay stable, but the fear of a relapse is always there. I had such good luck with Tysabri, but now I'm not sure what to trust. BC trumps MS, but after aggressive tx (MX, Chemo and Rads, to come soon), I feel pretty good that we got it. However, I am Triple Negative, so early recurrance is a possibility - one that I don't want to encourage with immuno-suppressants. But then, MS could cause so much disability (I'm so sorry to hear how it affected you), that quality of life is really affected. It's the old quantity vs quality issue. Guess it's time for the pro and con list.

Good luck to us all. Take care ~ Shar 

P.S. My oncologist is top-rate, but he admits to not knowing much about MS tx. My neurologist is top-rate, but not on BC tx. No wonder we are a little lost. 

hello Spica16,

MS and BC alone is cause for tears, but think about all you've been through for the past 6 months, And the saga continues.  I'm sorry its been such an emotional ride for you. Your intitled to the tears. I have not shed too many. I get more upset when my friends present me with a pity party. They really have no idea what I'm feeling. My attitude is "it is what it is". WTF is next.

I haven't had a MS relaspe in three years, my BC tx are almost done. I'm doing the best I can and it is working for me. I just wish I can wear high heels again. lol.

I have changed my diet and started to take supplements to battle the BC and make my immune system as strong as I can. Not such a good thing for MS, but MS does not kill. My only issue is the fatigue. I used to take provigil for that but it is no longer covered by Medicare and it is so expensive. 10.00 a pill. How dare they charge sooooo much. I think its going generic some time this year.

Anyway, I choose to treat the BC and then concentrate on MS because the MS is still stable enen tho I'm disabled. I walk like a drunk and I'm always tired, oh and I still have the double vision but I wear corrective lenses. amazing.

Let me comfort you and keep your tears at bay, and maybe I should try to cry a little more.

((((((xo))))))))))...............Maureen

chef 127...thanks for letting me know you haven't had any (additional) fatigue...that is truly my biggest fear at this time.

hello 3jaysmom,

I'm sorry the ms has effected you so much. It is so hard to say what the ms is responsible for or what will happen in the future. Its so unpredictable. When I had my last attack I had a bad cold. I took something pretty strong for the mucus and then added an alergy pill and BAM full blown relapse. I believe the chemicals caused it.  

I don't see a neorologist. He was always putting me on this drug and that drug and they usually had a negative effect on the rest of my body. Steroids made my blood sugar rise to unhealthy levels. Solumedroil gave me severe infections. I was peeing FIRE.

Although I am disabled, I've been lucky. But who knows. Supporting the immune system is proberbly NOT the thing for the MS but the BC is scary. One thing at a time. I'm finishing up the radiation and I hope it misses my thyroid. Did you have rads to your clavical area??

Have you seen Montel Williams lately? He looks great. He pushes nutrition and excersize. I'm sure there is more to it than that. I can't afford the same care that he is getting. It's not fair! The cry baby is making another million$$$$$$. It really bothered me when he started to cry everytime his MS was bought up. He rarely talks about it anymore. 

2 years in a wheelchair and you worked your way out of it. THAT IS GREAT! I can't walk or shop or clean my house for more than an hour a day...I miss shopping. Maybe thats a good thing because I can't afford to shop anyway. I've been shopping in my DD closet for a year now. We are the same size but I'm much older and the styles are a bit inappropiate for me. Oh well.

It's so nice to be here with other MS'ers. NO ONE ELSE CAN RELATE.

Lets stay mobile and healthy........Maureen

i also, aren't going to the neuro: he said "good luck" after the discussion of bc and ms meds.. theyre totally dependant on the ms meds, and don't know what to do, if ya can';t take them..

  with the thyroid, its the same old song.. can't take anything to "rev" up the immune system.. so, i just take it a day at a time, Having ms for so long, im used to living that way.. its' sad, though.. i tell everyone, i lived with ms, lived thru bc tx; but thyroid has laid me low.. its hashimotos thyroiditis, so it can turn around, if we get it lower.. the #'s i've seen miracles, so im always prayig for another one..chemo after a bi lateral masectomy, so can't help you about rads.. its a crap shoot.. they dxed me with "chemo  induced thyroiditis.. so, i guess rads and chem o can but don't always end up with it..

  i feel for you about getting out. i sure am not doing much on that front, much.. did get to salvation army today, bought 3 mens shirts to accomadate my swollen arm from lymphedema.. its worth the hour i spent.. only cost me $20.00 and got 5, 6 shirts.. happy day.......3jays

Hi Nana,

Yes, we are "Special"!!! No one knows what to do with us...

I'm in the same predicament, just at a different stage in the process. I have finished chemo (YAH!), and start rads next week. I am Triple Negative, so I'm done when rads are completed. The worst part of BC tx is over...now it's on to MS, again.

I was dx with MS in 2003, and have been on Rebif and Tysabri. I was doing really well on Tysabri, until BC decided to join the party 8/2011. My neuro said BC trumps MS, so off the Ty and onto chemo. The chemo did hold me stable, MS-wise, as my neuro predicted. I had my post-chemo check with my neuro, last week, and all MS symptoms are the same, although my legs are weaker. I had DD Taxol x4, and it gave me 'gumby' legs for the first few days. I even had to use a walker on those days, because my knees and ankles would just give out. However, as each day went by, my legs felt stronger and the walker was put away.  My legs may still be weak from the Taxol, or inactivity from the total chemo (DD AC x4  wiped me out) or the natural progression of MS. I have my MRI this Friday, to see if there is any new activity. I feel that I came through chemo with my MS unchanged, but we'll see.

My MO was concerned about using Taxol, because of it's neuropathy SE. He told me to take 15 grams (3 heaping tsp.), twice a day, of L-glutamine powder, mixed in a beverage, to help with the numbness and tingles, caused by Taxol. I did get neuropathy in my fingers and toes, after my 3rd Taxol, but it is now lessening every day. 

My neuro wants to put me on Copaxone next. She thinks this is the safest MS drug for me, right now, following chemo. She also wants me to see a neuroimmunologist for a 2nd opinion.  Hoo-boy, more complication. 

Nana, how did you like Copaxone? Did you have any problems with SE? I'll admit, I'm very spoiled by Tysabri... once a month IV, given by wonderful nurses, with no SE (I was lucky). Now I'm looking at daily shots, with site rotation, and possible site/skin reactions. Oh goody. 

I don't know if age is a factor, especially if your MS has been fairly stable. I'm 58, and have also had the invisible symptoms for most of my MS-career (it's a full-time job). I have crazy balance problems, so I'm a 'wall-walker', also!

Here's hoping that you finally get a tx plan tomorrow. Let us know what the MO says...

Welcome to the Journey, where we GET IT, 'cause we GOT IT !!! ~ Shar

P.S. This thread is under the forum "DCIS". I found it by searching for "Multiple Sclerosis and Breast Cancer". Maybe it should be under another forum, and therefore easier to find. I wonder how many other BC/MSers are out there who haven't found this thread??? 

Hi Chef,

I am doing pretty darn well, this week. Tomorrow is 3 weeks out from my last chemo, and I feel good. AND...I am sprouting HAIR!!! Right now, it's the cosmetic SEs that I'm dealing with, such as funky nails (brown staining, ridges,etc. from the Taxol), dry skin, weepy eyes due to lack of eyelashes, and drippy nose due to lack of nasal hair (it really does have a purpose!). Just minor, superficial problems. 

I had my neuro check last week, and it seems that I have the same MS problems, so no major changes, as far as chemo affecting me. However, my legs are weaker, but, as I said above, it could be the Taxol, inactivity, or just the unfortunate progression of MS. I have my MRI on Friday, so we'll see if there are any new active areas. I don't feel like there are. Hope there's not another surprise - I've had enough, lately, thank you very much.

Thanks for the info on Copaxone. My neuro thought it would be the safest, due to it's mode of action on the immune system. It's efficacy rate is lower than the other MS-drugs, but she thought it might carry me through this 'limbo' time, until the 2nd opinion from the neuroimmunologist. I couldn't give her my answer last week, because I had to mull it over. Looks like it's Copax or nothing, right now. I haven't had an attack since 2008, so the fear of one is unsettling. I like being stable!

The neuroimmunologist's office called today...they are reviewing my case, and will let me know. I won't see him until at least a month after rads, meaning a trip to Portland, Oregon in May or June. It's a beautiful 6 hr. drive there, so will be a treat if they accept me ( Hubby or Daughter would drive). My neuro wanted me to see the MS/immuno guru in Texas, because he is considered the best, but I just can't justify the costs (and stress) of travel to TX. BC sure has made MS a lot more complicated!

I can give myself shots, plus my Hubby is good at it, too. Rebif had an auto-injector, but it was more like a rocket launcher!!! Ouch. Back to the 'polka dots', with injections. Sigh.

I hate the idea of daily shots, because we are outdoors people, and it is so hard to stay clean when camping!  We live in Eastern Oregon, which is dry and dusty.  Oh well, I'll manage. I'm a former "lab rat" - worked in a hospital pathology lab, before MS sent me home. Yes - I worked with surgery specimens and biopsy samples, including breasts/breast tissue. Now I'm on the other side - how ironic.

Hope your week is going well. Take Care ~ Shar 

Hi Maureen,

I've been going through insurance statements and medical bills today, to make sure they are all caught up, and to get ready for taxes. Yikes! I don't want to see another doctor, take another pill, or go to another appointment, right now!  Stacks of paper have defined my life for the last  2 years. Enough!!!

Okay - you caught me - I'm usually smiling. Oops, just lost it while waiting on the phone to get through to the insurance rep - definitely not a smile-worthy moment.

10 rads to go - Yah! You're almost there! After 4 months of chemo, 6 weeks of rads sounds pretty easy. Of, course, I have to go... every... day...ugh. 

Hey! NO recurrances. Been there, done that...move along.

~ Shar

P.S. My daughter told me that she is so used to seeing me bald, that "it's gonna be weird seeing you with hair"      

(lol ?!?!?!?!?!?)

Hi 3jays,

I'm really sorry about your swallowing issues. I know that the thick it can be "hard to swallow" but you can get used to it. I never even thought about losing that reflex and it must be difficult. My speach was impaired once and I sounded like I was intoxicated. I had to start my conversations with I'M NOT DRUNK. Is the swallowing problem something that can get better?

My worse symtom is my eyes. Blurry, double vision,I cannot focus my eyes on anything while walking.everything moves like a bouncing ball. Makes me dizzy. It is permenant damage from my last attack. Oh well, like you said it is what it is. Or what it'll be. BTW, thanx for the BOLD print. It helps me read and I'm assuming thats why you use it.

Is the hypo thing related to the MS? Just one more thing. Good thing we are strong and able to cope with whatever is thrown at us....... Be well and happy.

Spica, I bet you look good w/o hair. Some women are lovely bald. Not me.

I'm glad you lovely ladies are here!!!!

Hi Chef,

DUH, on my part...I never even thought about the type being hard to read. I will use BOLD

from now on. Does double spacing also help?

 I can't imagine going through everyday with double vision. I would be sooo dizzy! Optic

neuritis was the symptom that sent me for MS dx. It was like a lace curtain was being

pulled down my right eye, with a gray shadow that wouldn't go away. It also affected

color perception, dulling the red hues. I don't know that it ever got better, but it doesn't

bother me now. I think I probably just got used to it, with my left eye compensating. In my

early MS-years, it used to flare when the temps rose, and my eyesight was blurry until I

cooled down. How the heck did you function in a hot, steamy kitchen - I'm amazed! 

By the way, what type of chef were you? That sure is a high-stress job. Did you just love

the fast-paced action? Exciting!  

I would have loved to be a pastry chef - I'm more low-key! 

I don't do bald well ...blah bone structure. Those gals with high cheekbones are so

dramatic! I'm going back to the chemo suite today for labs, and was thinking about

wearing my wig (the one in my avatar). It's cute, but I just don't feel comfy, in fact I feel

phony, which is absurd. Heck, my real hair never looked that good, so I should enjoy it.

Does it look funny wearing a wig with no eyebrows and eyelashes? Don't want to put on

a face of makeup for a 15 min. appointment. Someone needs a kick in the keister to get

motivated!

Have a good one ~ Shar