Multiple Sclerosis and Breast Cancer

LoriO

I went to a naturopath, he tested my vitamin d levels... way low, so he put me on 10,000 iu's vitamin d per day. I am now on 5,000 iu's per day, feel great.  Heard you should take it with fish oil... so check it out! 

Kaz12

When I wrote my post back in May 09 I was incredibly tired from the radiotherapy, so much so that I recall I was falling asleep as I was typing it! 

It's now 7 months later and I am feeling a little better, more awake now.  Though still not as good as I was feeling pre-BC back in say July 08.  I took Tamoxifen for 6 mths after my reocurance cos I was shit-scared that the cancer had spread.  Now, looking back, the reoccurance was exactly where the lump had been so it must have been in the skin. 

I can't handle the Tamoxifen side-effects so stopped taking it about 5 mths ago.  I guess I've decided on quality over quantity.  I haven't been very good since the radiotherapy and if I had known how much it would effect me I don't think I would have had it.

I still haven't had reconstruction as I'm scared of getting cellulitis (infection) from surgery again.  I have a goal to have it in 2012 when I'm 42 y/o.  I'm slim so the surgeon is a bit worried about getting enough fat for my new breast.  Also he doesn't want to take muscle/fat from my back as I need it to stand up with.

Kaz12

Here I am again, no-one probably goes onto page 2 but I thought I'd post anyway, on the off-chance.  What I really would like to know is how people feel emotionally after all their treatment?  I have had to go into a power chair since radiotherapy, it or the stress of everything has affected the MS so much.  I didn't think I would be in one at this young age, in fact I was still quite mobile pre-bc.  I am hopeful I will start feeling better in 6-12 mths from now but who knows.  

Because of this, and how bad I feel physically, I feel emotionally at my wits end.  I feel so sad I'm crying at least once a day and my head feels like it will explode sometimes, like I'm on the verge of a panic attack.  Does anyone else have similar feelings?  Your input is very much appreciated.

JAT

Hi Kaz12:

    It's now 1 1/2 years since my bilateral for DCIS and I still feel very sad and angry and worried.   The hardest part is that everyone around me wants me to "move on" and feel happy that I'm alive. I am glad to be alive but I feel that I have a dark cloud over me and every ache and pain, which I know is probably age related (45) and stress-induced, freaks me out. I did try therapy with someone who specialzes in breast cancer patients but that didn't do much. If someone could say, "your cancer won't come back"- that would probably help a lot more!  Other women tell me it will get better over time, but in the moment that doesn't mean much to us.  I try to keep busy but I find that my mind is always wandering.  I wish I could offer some sage advice but I just wanted to tell you that what you are feeling is pretty common.-- Julie

Kaz12

Thank you Julie.  I think it's so easy for other people to say 'move on' as they don't have a clue what we're going through, especially as we had other things to cope with pre-bc, namely an incurable progressively-disabling disease (MS).  Like I told the cancer lady when I first got diagnosed with bc, I may become cancer-free but I'll still have the MS to cope with after that.  And I was so positive through everything, I think things may have caught up with me.  Also my partner wants out, he can't cope now that I am more crippled AND have one breast AND am slightly depressed.  In a way I say 'fair enough', in another way I say 'when the going gets tough, the weak exit pronto' :-)

COOLMSBEAN

Hi! First of all sit back and relax, just with MS, BC is just another pain in the butt. (MS - Minor Set Back) haven't thought of one for BC yet... working on it.  Needless to say I've had surgery and my oncologist wanted the OncoDX test ran to find out the likelyhood of reoccurance. Mine came back medium so I need to go through chemo.  Had my first chemo Jan 27, 2010, prior prep was to stop my Avonex and any fever masking drugs. Still taking multi-vitamins, vit D, Omega, Prozac, Blood pressure med, and provigil.  Went in on Wed took all day, great feeling then Friday night experienced real bad fatigue and horrible migraines, along with tense shoulder blades, By Monday they slowly subsided, come to find out one of the nausea medicine causes migraines, I was furious, of course it went in the trash and the doctor ordered me some imitrex and new nausea medicine that helps with migrains. I am still able to feed the babies and take naps with them, and over all I don't think its been to bad. Hope this feedback helps whoever is reading it, because there is no information out there and I am working on that! I have a bracelet on my left arm where I had my lupectomy, I no longer allow shots in that arm and I no longer can check blood pressure in that arm because of the risk of lymphdema. I did cut my long hair in anticipation of loosing it from chemo, so my husband cut it for me and now I have a bob, and the hair was sent to Locks of Love.  American Cancer Society set me up with a wig and hats, great bunch of people and they got me a support person I can call and she is awesome. My doctor said push the water and flush the chemo out asap so before chemo I got steroids to help inflamation, IV of water during processs and followed up with more water for the first 48 hours after, he said you want that stuff in and out of you fast, so if you have to pee, go immediately! (bought some depends just in case, but didn't end up needing them) I also got a Chemo Cookbook "Eating Well Through Cancer" by Holly Clegg & Gerald Miletello, M.D. - Easy recipes for before, during and after chemo treatment. Hope this info helps. God bless and be positive!!!!

Juli50

I have a question...Halfway through my rads tx last April, I started having a problem with heat. Whenever I was in a hot room, hot car, hot weather, or having a really hot flash, my arms and legs would sting (like bee stings). It doesn't stop until I cool off. It doesn't happen as often now that winter is here. I'm on Effexor so my hot flashes aren't as intense. Every doctor I've seen acts like they have never heard of this. Recently I read it might be a symptom of MS. What do you think?

 Thanks, Juli

heatherpalmerton

Hello just food for thought. I hav scleroderma, I have been told that people with ab autoimmune disease have higher rate f breast cancer Heather

Goddessred

Greetings Ladies!  Sooo happy to have found this discussion.  I'm a 56 y/o dx with RRMS in 4/08 & currently on Rebif therapy.  Dx with breast CA in Jan 2010 followed by 2 surgeries...1st lumpectomy and sentinel node came back positive, then removal of lymph nodes that were all negative).  Oncologist first suggested discontinuing Rebif then starting chemo (Cytoxan & Taxotere) 6 rounds beginning 2/15 followed by 5-wks radiation.  He's now changed his mind and wants me to start with radiation and do some further blood work to see exactly what type of chemo (if any) might work without exacerbating the MS.  Hormone therapy has been mentioned as well.  All to begin within the next few days....

I was doing well on Rebif, able to work as a mental health counselor full-time, with only minimal MS symptoms.  Now I'm scared that my life will be suddenly very different. Employer is understanding & I will probably have no trouble getting my job back if I can return by May.  Husband and large extended family are very supportive and helpful.  My biggest issue is that I'm a professional "caregiver" & not at all comfortable asking for help from others.  I know this is a wake-up call & that I have to get over the fact that the future may not be what I hoped. I can also relate to those expressing increased depression...I'm a mental health professional on Wellbutrin & wondering how well I can handle my new reality.

I think all of us with both MS and BC have drawn the Special Life Challenge card and must each find what we believe will work best for us, as we are truly "lab rats" in this area of medicine.  If you have not already, check out patientslikeme.com for MS support & knowledge from peers.  Thanks for all the advice and encourging words as I begin this new journey.

 Be well,

Deb

PS: Small world Juli...we lived in Simi Valley in the 1980's!  I'm a CA Girl & miss the mountains!

Juli50

Deb - Maybe we saw each other in passing! I have lived in Simi since the 80's. The mountains are all green from the rain. I love them that way.

Stanzie

Hi, very happy to see this thread. I too have M,S. - I was diagnosed in 2002 but my Dr. thinks I have had it since I was around age 12. It is relapsing/remitting. I am doing very well with it so far and have been on Copoxone. I was diagnosed with DCIS and LCIS in Feb. 2010 and had Double mastectomies in March. My neurologist told me to make my decisions about the BC without worring about the MS.

The main think I have noticed so far is going off the HRT ( I went into early menopause at 37) is the fatigue has been terrible. I kept thinking I was still recovering from the surgery and anesthesia but then it hit me one day - nope, but that isn't it. Heat bothers me a lot and living in the south - summer isn't great. My gyn. said if he had to make a guess which patients might be at a higher risk for bc, I would be up at the top of the list because of MS. He had me on fairly high estrogen and progestrone which my cancers were positive for both but boy did I feel great on it and had tons of energy. I do miss that almost as much as my breasts. So glad to see this thread! Thanks.

gracieno1

hello everyone,

I am glad i found this site.

I was diagnosed with dcis in feb2010 ive had a lumpectomy

then wide excision last monday.they said they got it all.

Next i will start radiation may 26.dont mind saying im pretty nervous about it.

I was diagnosed with ms in1992.i have done very well with that .

Just wondering how the radiation will effect it.

good luck to all here and most of all keep posative attitudes!

I have found that has helped with my ms

over the yrs

lac4

I can hardly believe I found this discussion board!  I was dx with RRMS in 1989 - and I live "in the closet" because of attitudes and, frankly, discrimination over the years.  Because I have had infrequent relapses, no one I currently work with has any idea I have MS. I have taken Copaxone since 2004, and have had no MS relapses since then.  I have now been dx with DCIS with possible microinvasion, with biopsy in March, and lumpectomy with sentinel lymph node biopsy last week - 4/22.  I don't have the results yet, but I sure do hope all will be fine.  I am concerned about interaction of the treatments for MS and BC.  For instance, I feel Copaxone is a lifesaver for me, but it has an occasional side effect of mild lymphadenopathy. I do not want to get radiation because of concerns about the MS - in 1989 I was fully paralyzed from the neck down with hospitalization for about 2-3 months - I will take no chances of having another experience like that!  Plus, I have fair skin and I sunburn very easily.  I read a study recently that said that if the lumpectomy margins are ample (10 mm all around the DCIS), and the lymph nodes are negative (hoping, hoping), that chance of recurrence is 4% in 8 years, only slightly higher than the 2% with radiation (I printed that out - I can separate it from the other materials I have and cite it).  Any thoughts on this?

Stanzie

lac4 - I can't help you with most of what you asked about but I can tell you what I heard from my neurologist. I too am on Copaxone and have been doing very well. He told me that Copoxone is one the meds which would not have to be stopped for cancer treatment. I went to see him a few days after my diagnosis so I didn't know what might be suggested for me. He told me not to base any decisions I needed to make for the breast cancer on having MS. Don't know if that really helps or not but it was all he told me.

I didn't have to have radiation but I would assume that fatigue might be an added problem. Also with chemo.I have three kids and I was worried about that and they added time so I went for the more surgical treatment and had double mastectomies. There unfortunantly aren't any choices that are good or even better just what works for each of us.  I'm sorry to hear about your hospitalization that would be very scary and I hope you don't have anything like that. I wish you the best. 

giannac

I too, am glad I found this site!  I was diagnosed with relapse-remitting MS in Nov. 1993 and then DCIS in Oct 2009.  I had a bilateral mastectomy in April 2010, which brought back my MS quite severely leaving me unable to walk for a while, had brain fog, along with a feeling of pressure in my head (I was symptom free for 9 years) but I'm okay now but I'm just left with a few memory issues.  My oncologist has told me that after surgery, the DCIS was actually invasive and like to start radiation next month but...I just had my last expansion done June 10th and the expanders are metal!  Needless to say, I am a bit nervous and have a question about two things-1) what effect radiation has on MS and 2) has anyone had radiation with metal expanders in? 

FYI- I  was told by my plastic surgeon that even though the ports on the expanders are metal,  (Princess Margaret, in Toronto) is fully equipped to handle it, which is the one I go to.  The oncologist says that he's oncerned about the capsular contractures forming around the the metal expanders and secondly the effects of the radiation on MS.  So, if anyone has been through this, I would love to hear from you.  Let me just say how brave all of you have been, for the ones who have gone through radation or chemo and any surgery for cancer...my heart goes out to you...I'll look forward to your reply. 

Stanzie

giannac -

I don't think I'll be much help to you as I didn't have expanders nor did I have radiation. I'm so sorry the DCIS was invasive. I have never heard anyone mentioning metal ports so it might be common. You might was to also post on one of the expander threads about that as they would know more about that. And also about capsular contracture - it would seem he would know about this.

I went to my neurologist after I was diagnosed and he said to do whatever I needed to do to get rid of the cancer and don't let having M.S.  make a difference in your choices.

For me going off estrogen has brought more of my M.S. symptoms back. Hope you can get some answers on the metal port.

giannac

Thanks Stanzie:

Your advice is appreciated and I'll follow up by posting again on one of the expander threads.  I agree with what your neurologist said, just get rid of the cancer and don't let MS affect your choices; I'll try to do the same, as I think it sounds like good advice.  Thanks for taking the time to share that with me.  

Kaz12

I've just been reading through my posts at the top of page 2.  How little I knew back then, so much has happened in 6 months.  Late Jan 10 my left lung hurt like hell.  My dr diagnosed viral pleurasy and I went in for an x-ray to make sure I didn't have pneumonia as well.  Next minute I've been told I need a CT scan, the results of which changed my life FOREVER.  The results showed I had mestatic breast cancer in my left lung and some bones, I got given 8 mths.  Holy F**K. 

I went straight back on tamoxifen and it was horrible, I thought I would rather be dead.  So they put me Zoladex, which hasn't been too bad.  Zoladex stops the ovaries producing estrogen (I'm ER+).  I'm going through a sudden menopause.  The bonus is I no longer have periods (I'm 40 y/o), the negative is the bladder needs estrogen and it spasms a lot, and I retain fluid and have hot flushes, all horrid but worth it - I had another CT scan 6 weeks after I started Zoladex, no new lesions and the lung ones have significantly decreased.  Now I've been given 5-7 yrs but the truth is they wouldn't have a clue.  I also needed radiotherapy on a large lesion on my sacrum and now that isn't painful.

I agree with you goddessred, we are lab rats.  All that time they thought they had my cancer contained they didn't at all.  Onc told me the surgeon had saved my life after my mastectomy.  Radiotherapist told me he was going for the cure after my reoccurance.  About a year ago I had a sore lung but nothing showed in the CT scan and my surgeon told me not to come in for every little pain.  Well ha ha, I was right after all! Bitter-sweet for sure.  So now I'm taking charge, I insisted my onc consult a neurologist about me and she has been very helpful.  Anyway, this is now a novel.  Is there anyone else out there with stage IV breast cancer AND MS?  I feel like I may be in an even more exclusive club now.

Maria78

Hi Jackie....I was diagnosed with MS in 2003. I was just diganosed with breast cancer in May of this year. I am currently not taking any MS meds. Do you happen to know what meds your sister was taking for MS when she was diagnosed? I am only 32 years old with no family history. I am starting to wonder if my MS meds caused this. Just curious If anyone else could tell me what meds you were on before diagnosis that would be great

Thanks Maria

mollymay

Hi, Thanks to all who have posted on this topic.  I thought I was alone.  One year ago I was diagnosed with invasive BC and MS within 2 days of each other. I was 43 years old. Previous to this I considered myself very healthy.  I followed the rules.  No family history of BC.

I was anxious to "fix" everything as soon as I could, so I had a double mastectomy with immediate saline implants.  Chemo followed, now I am on tamoxifen never got my period back.  Hot flashes.

I am having a hard time adjusting to my new reality as SICK GIRL and going out of my mind.  Been depressed and sleepless and just discovered YESTERDAY that Avonex can cause depression.

I don't feel like any of my doctors have a clue about how these diseased coordinate!  You can not take prozac or older generation anti-depressants when you take tamoxifen.  Only my onc. knew that.  Avonex causes depression.  Cytoxan makes your feet numb, you may think it's an MS attack and they will want to give you steroids which makes you more miserable.  Does anyone out there think there is a connection between MS and BC?  Why did I get both at the same time?

susan_CNY

I am not a MS victim, however I lost my only sibling Patti to that awful disease, so sorry to see so many others, prayers for us all, wish I could help.,

Maria78

Hello mollymay....there has to be some kind of connection between MS and BC. There seems to be quite a few ladies on here that have both. I wish we could all find answers. When I was diagnosed with MS in 2003 I started Avonex. It was horrible. I was so sick and depressed. My family even noticed how miserable I was. Copaxone worked great for me but then I broke out in a rash. You start to wonder if it's the MS meds that are causing different things such as BC or is it just because our immune systems are out of wack.

KWolf

I too have MS.. I have Secondary Progressive MS had it for over 30 years.. I too wonder if all the drugs I have had over the years play a part in my BS...  I also have High Dose Steroids every 3 weeks and I am sure that is not helping at all.

I must admitt that dealing with MS and BC and having to use a wheelchair and work full time is getting very hard for me...

Stanzie

When I was diagnosed with BC my gyn was the one who delivered the news as he ordered the mammograms. He isn't a regular gyn, he used to practice as a reproducive endocrinologist then decided to swich and do more of menoapuse patients.

The Dr.'s think I have had MS since I was 12. I was only diagnosed officially in 2002. I went into early menopause at age 37 so when I got the diagnoses of MS. I was confuses on why symptom was what. I was 42 at the time. He put me on HRT and even though that most likely did cause the BC being on it was really wonderful with three small children as it took away the MS symptoms and gave me energy and I could sleep and was happy and.... then BC. So now I'm back where I was not sleeping, lots of pain, tired all the time... But I'm rambing what I'm trying to say was this Doc said he wasn't surprised I got BC. I asked why and he said having MS means having an imunme system that doesn't function properly so it opens you up to other diseases which does make sense. When something as big as your imune system is off then yes I think we do have to be more careful and pay attention more to what our bodies are telling us. Anyway, whether we are more suscipitable to BC in particular, I'd say no only because all the surgeons I went to and the BS only does BC he hasn't seen many patients with both.

Someone asked about what meds before BC. I have been on Copoxone daily injections before BC, durning and now. 

DanielleSurvivorSince03-09

Was anyone on here diagnosed with MS after breast cancer?  It seems most of the people on here were diagnosed with MS first, then breast cancer.  I am 32 years old and was diagnosed with stage 2B invasive ductal carcinoma (ER+/PR-/HER2+) breast cancer in March 2009.  I underswent 6 chemos (high dose Taxotere, Carboplatin, and Herceptin), 33 radiation treatments a lumpectomy and lymph node dissection surgery.  I was on Herceptin for a year (finished 3-10) and started Tamoxifen (which I'll be on for 5 years) in October 2009 following the end of my radiation treatments.  Recently, I've been having this tingling in my back and MS runs in both sides of my family so I went to my family physician who referred me to a neurologist, who ran a brain and spine MRI.  There were a couple spots on my MRI and the radiology report said "solitary focus of demyelination cannot be excluded with centainty".  They said it could be a number of things and ran several more tests and have concluded that it's either chemotherapy or radiation induced neuropathy or it could be MS.  I'm supposed to wait 6 months and see how things go.  For the people with MS on here, what were your early warning signs and how long did it take for you to get diagnosed after your first symptom appeared? 

mollymay

Hi Girls,  My heart goes out to all of you.  July of 09 I had some tingling in my feet that progressively got worse.  I was numb, but functioning.  That lasted for about 3 weeks until one day at work I fell down.  That got my attention, so I proceeded to get everything checked out. 

Routine mammogram found cancer, MRI of my head and lower spine showed 4 active MS lesions.  Doctor diagnosed MS right away (My brother has it too) The doctor thinks I have had MS for some time but didn't know it, that there was older damage in the brain.

I will say that the Taxol and cytoxan I had gave me symptoms that were very similar to MS. However they did not progressively get worse and did go away with time.

I also believe our immune systems are completely out of whack.  However, that makes me nervous that cancer will rear its ugly head again.  Thanks for listening. 

Stanzie

For me I went to the first neurologist when I didn't have insurance so probably good he didn't diagnose it. But for me it was everytime I tried to lie down my left leg throbbed with intense pain. He just gave me an anti-inflamitory and sent me home. About 4 years later after my step -mother -in - lae died suddenly then 1/2 my tongue went numb. I didn't think too much about it, thought I burned it. But when it didn't go away I called my internest who came on the phone quicker than I ever thought possible. when I told him it was the left side of my tongue he was very relieved and said well good at least we can rule out a brain tumor but go see a neuroligist - he said at that point he knew. After the MRi I got the diagnosis. I thought they were going to say I had a pinched nerve so I was totally off guard. But they think I've had it at least since I was about 12.

I agree that being nervous that cancer can come back is something to be aware of but at the same time because of having both diseases I think we are more aware and watchful so hopefully if it does come back we will catch it very early. Otherwise we just can't worry too much as we have too much going on as it is..... As my son said he learned today, Life just isn't fair....

KWolf

I was dx a long time ago in te 80's so thing have changed so much since then. They did not have MRI back then so it was very much "lets test for everything and see what it is NOT"  I try not to think about all the drugs I have taken over the years and I have no idea if they could have caused my BC or not.

I would love to get treated with chemo (yes I am Mad) as it helps MS... I have Secondary Progressive MS so I am getting more and more disabled as the years go by... I have to use what energy I have to fight the cancer and try to not let my MS symptoms overwhelm me.. MS wont kill me BS might...

Sometimes I do wonder what I did to deserve all this...

mollymay

Hi KWolf,  What happened with your biopsy?  Hugs!

3jaysmom

hey ladies.!!i had no idea there were so many of us here that had MS. Stanzie and i've spoke, but my goodness here we all are !I counted seven, and i make 8. yes, ive had ms for over 2o yrs. now, and have not taken any meds. because i cope well, and have all the adaptive devices one could have, and that helped.Believe me, after chemo, my ms is much worse.  just the neulasta shot after AC/DC almost killed me, literally. ended p in hosp. still had 3 more shots after that. it was the single hardest thing ive ever done, and ive had 5 strokes, not that hard..still, i bekieve that because my immune system is so screwy, i was a a greater risk for bc., and because of ms, i cant handle als, so am still at higher risk for reoccurence still.Ive had mrsa from every surgery withbc, just got out this past wk with another outbreak of mrsa for surgery to clean up from surgery last year.  it is certainly NOT a winning combination, thats for sure..lol i cant say im glad you r in the same boat as me, but i feel we have a real special spot together. please, any one of you who would like, i would love to hear from you.   light and love, 3jaysmom