Multiple Sclerosis and Breast Cancer

mom_of_2

Thanks to all who have responded. I'm still in the "figuring it out" phase of MS. BUT then again from what I have learned there really aren't any answer and MS is a tricky disease. This is going to sound crazy but in some ways cancer was easier for me to deal with because I had a very stick schedule. Docs told me what to expect and when...chemo then surgery etc. Seems M.S. is much less predictable. I'm not handling the BIG UNKNOWN...I'm too type-A but I'm working on it. Have next brain and eye MRI on the 14th followed by Neuro-opthamologist and Neurologist. Hoping to get more clarification as to disease status and possibility of drug therapies. I guess I will have to follow-up with my med onc too as I am in a clinical study. I have no idea if there is a certain criteria or protocol if I need another drug therapy...I would hate to compromise breast cancer drug trial. 

3jaysmom

yah, mom of 2.. they told me bc trumped ms, do everything i could to fight that first. then, we'll see.. will go for my next ms eval in miami (no opening for 2 months!) they closed the Ft. Laud. clinic, so wait i will.

    take a big breath, and just take care of first things first, girl. if you ever need me, im a PM away. i've had ms for over 20 yrs dx; and am out of surgery 2 yrs., tx for 1 yr with bc.. im praying for ya.        3jays.. if prayers don't work for you, i light candles for my "other" friends.. it all works for me!

RLSaylor67

I feel so fortunate to have stumbled across this site! I have had relapsing remitting MS for 5 years. I am taking Tysabri for anyone who has questions about that I am happy to help! ALL OF YOU are so inspiring!  I am going through the very early diagnostic stages of possible breast cancer. In fact I'm only going for diagnostic mammogram and ultrasound on the 17th of this month so it could be nothing, but of course the first thing that ran through my mind was the big if's, but how does it affect the MS and I feel I have so many answers on this site! You all have inspired me so much! I am praying for you all and just wanted to say THANK YOU for such a great site! I am hesitant to read too much about breast cancer because I want to think positive and now, I feel much better and don't have to read other sites that may have negative postings. My hat goes off to all you ladies who are so brave and shares your stories. I've always said if me having MS could be to help or touch even one person's life it would have been worth it, well YOU LADIES, all of you have touched my lives. Regardless of the outcome of my testing I will drop in time to time to check on your progress! Thanks again!

3jaysmom

RLSaylor67 WELCOME! i'm one of the few who keeps up with this site. been off BCO for about a week; so, anytime, pm me. i get notified at home of a pm.... glad your here, if ya gotta be. will be praying that your tests will show ya don't have to be!! let us know..       3jaysmom

Stanzie

3 jays - how are you doing these days?

RL Saylor 67 - hoping your tests come back and they don't find anything but in case they do we will all be here for you! 

3jaysmom

hey stanzie, thanks for asking! im having some challenges, it gets interesting! went to my LE therapist, who also works with reg ol pt. she said after examining my calves, they've shortened due to spasms, and that's the reason for my imbalance, and falling backward. 

 last year, a "specialist' told me to get out of the bbirkenstocks, negative heels weren't good for me. out me in crocs. which, apparently, allowed the shortewning of the calves. back to birks i go.. i like them much better, anyway.

 the therapist is gonna use the le rx for my arms, but also is working with the port surgery, which is contracted, and with my calves. she just gives me the excersizes, then cks me in a week or so. it becomes pretty rotwe, as you know. i really haven't been stretching my leg so much lately, there's so much to keep track of. at least, stretching is something i just gotta get back in the habit of doing! how're you holding up?

   summer isn't too far away now, in so fla., so i'll be walking and stretching in the pool before we know it. its' 82 today, already...       3jays

RLSaylor67

3jaysMom- Thank you so much for your sweet message! I am sorry, I am horrible with the acronyms so please forgive my ignorance, what is PM?

RLSaylor67

Stanzie,

Thank you so much! I greatly appreciate that! How are you doing?

Stanzie

PM is a private message. you go up to member list and type in the member you want to send a message to and it is a private post between the two of you. I know all the abbrivations can get confusing.Let us know when you know more. Thanks, I'm holding steady right now so that is good. Now if I could just fall asleep like normal people.....

 3 Jays - glad you are getting some good information and help. Yes I also agree streching helps tremendously. would love to try Yoga but not sure if I'm co-ordinated enough. Might start with a tape at home so no one can see me! 

momof3sofar

Welcome RLSaylor67!  I hope you don't have to join our club but if you do please know that nothing is as bad as it seems in the beginning.  Waiting is always the hardest part, it is true that knowledge is power!  I only stop by here once a week but if you have any general questions post away and I'll hopefully add to whatever has been answered already!!!

3jaysmom

hey ladies! so glad to see you here again.. stanzie; awhile ago i took "yoga for senirors" they even have tapes for doing it in a chasir. the stretch i used to do 3xs a day is with a elastic tube, one they use for strength building. i catch it on my foot, and i have to crack the heel down, and stretch.. i "forgot" from THIS journey, now, ms is in the forefront... that, and the ever present pain in the butt LE.. 3jays

nim88

My wife was diagnosed with MS in early 1996 but it was quite mild with only numbness (though at times the numbness was bad). At that time the doctor's said not to go on any treatment. We opted for traditional chinese medicine which seemed to help her a lot. The numbness etc. improved a lot. In 2005 she was diagnosed with DCIS stage 0 (at which point she had stopped the Chinese medicine for MS) and had a lumpectomy plus radiation. In 2009 she was diagnosed with ILC in the other breast stage 1. She had a lumpectomy but then decided rather than rads again and worry every 6 months when she goes for an appointment she would rather have a double Mx which was done in June 2009. She is now on Tamoxifen.

In the last couple of years we have begun to notice that numbness symptoms in her right hand and right foot have worsened. On hot and humid days if she walks for about 20-30 minutes she cannot walk more and after resting a bit manages to walk again. Same thing when she exercises and this is the dilemma - with bc exercise is important but the MS is hampering her exercise. Can you ladies give us any advice on how you deal wit the exercise part?

As an aside I had posted on this forum a few years ago and mentioned I was convinced there is a link between MS and bc - but I think only one person was familiar with someone with both. Clearly - and unfortunately - this is not so uncommon. Has anyone seen any studies that links the two illnesses? 

3jaysmom

just wanted you guys to know, im still here, and cking in. i can be found on the "older women with more sense " any day, so if ya need me, i'll be there, or PM me. i hope y'all are doing well. next monnth im off to the new ms clinic in miami. ill letcha know whats up then...   3jays

Stanzie

nim88 - From what I have read and been told that having an auto-immune disease does make you more open to cancer of any kind as our immune systems are not functioning properly. If you know of other links, I'd love to know. Thanks.

ducky2020

Well, I'm back. My computer is down so I have to borrow one to stay in touch.  I had Neuro call me to ask if I had had an adverse reaction to Copaxone.ie BC. He didn't think it was an adverse reaction. LOL  I just not sure what is or isn't anymore. 

I'm still taking it. My radiation is almost done. Had some real sore spots but it seems to be etting better. Lots of Silvadine,Aloe Vera and Jojoba. The breast is very sensitive and kinda numb but I've been told that is normal.  My fatique is improving, however as you can see I am a night owl.

I hope you all have a wonderful Easter.  Each day is a blessing!!!!!

3jaysmom

hey ladies.. had an interesting visit with the specialist ms centere in Miami.. after the exam, and him looking at the latest mri; he tells me he's not able to classify my ms, and ordered more tests.. can't explain it, he sees the demylinization, sees the symptoms.. he's ALL hung up that i am so good, for over 20 yrs w/out a med... now, he wants to start all over!!???... well, at least he didn't say secondary progressive, like i feared. it kinda leaves me in no mans land, but not any worse than i was before... weird, huh?      3jays

DPrestinRI

Hi:

I'm new to this and am completely in a fog.

I was dx'd w/MS in Oct. 2000 w/RR.  Within 5 years, I was in a wheelchair and had chemo for the MS. I am almost a quadriplegic.  I am 44 and still work at home, over the internet, with a voice recognition program. I now have rapidly worsening secondary progressive MS.  On Mar. 1, 2011, I was dx'd w/breast cancer.  I am having a mastectomy at Dana Farber on 6.8.11. 

I'm totally overwhelmed and Dana Farber told me they have never treated anyone with severe MS like me!

Any input or insight from anyone would be great!

Diana

Kaz12

hi Diana, how are you going now?  How is your recovery after mastectomy?  How are your medical team treating you?

LucyLane

I also have BC & MS (diagnosed with MS in 1993...BC 2/2011). I've wondered on occasion, if some of the MS drugs I"ve taken over the years had any bearing on development of BC (mega-steriod treatments, especially).

I start radiation treatment next week, and I am concerned about the fatigue that will inevitably come with it.

If this wasn't bad enough, my seasonal allergies are KICKING MY BUTT right now, and my sneezing fits actually TORE THE RETINA in my right eye.  So in the midst of everything else, I had to have not one, but two laser surgeries on my eye, to keep from permanently losing the vision in that eye.  I've spent the last week trying desperately not to sneeze or blow my nose hard, so I don't dislodge the "sautering" job that was done to reconnect my retina to the back of my eye.  I have a "snow-globe" effect now (lots of these particles & swirly things floating in my eye, that cloud the vision.

Got prednisone & nasal steroids to get sneezing under control.  Hopefully I an get radiation started on Monday, while still juggling checkups on the eye.

MS doc said to wait until all of this is behind me, before trying to put me on low-dose Rebif for MS.

I am now disqualified for the newer med (fingolimod) because of the BC diagnosis.

Dare I ask....what's next?  I'm 47, but I feel like I'm 70 (the last six months have been real agers).  The prospect of starting Tamoxifen is also weighing on my mind.  Am I not going to feel like a "woman" anymore, knocking all the estrogen out of my body?  Will I be able to maintain at work with "fussy brain" & mood swings? how about my favorite...weight gain?  Geez..

Lucy 

Kaz12

Hi Lucy, man you've been through the wars lately, bummer about your retina on top of everything else.  I suggest you take the Tamoxifen.  My story:  after surgery and radiotherapy I started on Tamoxifen but hated the side-effects so stopped it.  Cancer spread to my lung lining and bones.  Oh feck now I'm terminal.  Went onto another hormone drug called goseralin which knocked me into menopause and other side-effects that were awful.  Now I'm back on Tamoxifen, cos it's the lesser of 2 evils, well 3 if you count the cancer. 

The cancer currently seems dormant but will raise its ugly head sometime in future.  The 1st time i was on Tamoxifen I was walking and working.  Now after more radiotherapy and menopause I'm in a wheelchair on disability. 

But it seems as if tamoxifen is very effective for me and I soooo regret stopping it back before the BC had spread.  I am 41 years old   Yes I've put on weight after menopause and taking tamoxifen and being in a wheelchair but beats the alternative!

With Tamoxifen I've learnt to take it with my evening meal and a glass of water.  That way I sleep through most side-effects.  It's important to take it with food.  

  Also, I too wonder about the MS meds and 'the BC link as I had/still have mega steroid doses.  In saying that, I also think we have high levels of estrogen.  Is there anyone out there not ER+? 

3jaysmom

anyone hear from Diana after she had surgery???    3jays

Stanzie

Kaz12 - Oh I'm so sorry - gosh about everything you have gone through - seems to me like the Dr.s would have helped you somewhow with the Tamoxifen early on and the side effects. I don't begin to know what to say... Interesting you say you thought we had high levels of estrogen? Never have heard that but then it seems my body always seems to do the opposite of what everyone else's does as I have always been on the very low side. Started my period at 12 - never heavy and was in menopause by 37.

3jays - how are you feeling these days?

Lucylane - goodness, I never knew that was possible, how awful, but I guess at least laser surgery is an option. I don't know how steriods affect BC but I did go in specifically to ask my MS doc about Copoxone and BC. Now of course I cannot remember exactly what all he said but it made me feel better that they were not connected. 

3jaysmom

ey girls, looks like we;re showing up here again!! thanks for asking,  stanzie. i've been really ill; and been misdxed for last 4 months. MS specialist says not MS..everyone assumes it is, always..

 ive been so fatigued, and practically bedbound... turns out (finally) ive gone hyp o  thyroid. a 1.35  mass in the thyroid. also, kidneys malfunctioning,. but it can all be related. will know more in a week or so ( i hope) altogether, i saw 8  different drs... finally, bc i was having staph infections, all over.. i went to the CDC specialist here. he was stumped did tons of tests, and bitched ME out cause it took so long to find it!!!drs. what jjerks some of them are... so, now on to the surgical endocrinologist on the 19th. the mass is big enough, they want it out...so don't i..so,round and round she goes...where she'll stop.. NOBODY knows!!!  isn't life post bc i hope wonderful!!!hope all are well. welcome to any i haven't met..been in bed..hahaha3jays

Kaz12

Here's a story about me that appeared in a magazine about a year ago. I'm in New Zealand so the spelling will sometimes be a little different to US. Oh, I have been in a racecar since!





At 24,1 was fit and healthy, so when I became virtually blind in my left eye, I presumed it was something I’d just get over. The doctor prescribed various treatments but I kept losing my balance and felt pemianently exhausted.

Finally, after a year, I was given an MRI scan. That’s when I was told I hail MS - multiple sclerosis, ‘It’s a disease of the central nervous system,’ the doctor explained. ‘Over time you will lose muscle control.’ I was so shocked I could barely take it in.

‘It’s best if you don’t have children,’ he continued. ‘Pregnancy can spark a relapse.’ So not only did I have MS — I would never be a mum. I couldn’t stop crying. To cope with the shock, I focused on my career. I had a business degree and got ajob as a bank manager in Christchurch.

‘Look after yourself,’ my dad Tom, then 50, said as he hugged me goodbye. But I didn’t take care of myself. I threw myself into my job so I wouldn’t have to face my health issues. I didn’t tell anyone at work about the MS. Each year d have a massive injection of steroids to boost my energy levels but it became increasingly harder to hide my condition. At times I was so exhausted I'd have double vision and needed crutches to get myself around.

Eventually the stress proved too much. Alter three years, I quit. ¡ moved in with Mum. I swapped fast food for fruits and veggies, joined a gym to strengthen my muscles and began to meditate. Within weeks, I felt happier and healthier than I hail for years. I launched my own business teaching people computer skills and moved into an apartment on my own.

I even signed up to a dating website and met Tim Leatham, 43, who shared my interests in computers and meditation. When we met, we’d chat for hours. Eventually I found the courage to tell him about the MS. ‘That’s not a problem,’ he replied. ‘I want to get to know you.’ We fell in love and moved in together.

One evening, he turned to me. ‘Will you marry me darling?’ he asked. ‘But what if my MS gets worse?’ I said. ‘We'll deal with that if and when it happens,’ he said. ‘Then the answer’s yes,’ I smiled. Everyone was thrilled for us. ‘When’s the wedding?’ they all asked. ‘After we’ve finished renovating our house,’ I laughed. But at 38, 1 noticed a lump in my left breast. ‘It’s cancer,’ the surgeon said. ‘We’ll need to remove your breast.’ I sat in silence. Tim hugged me. ‘I’m here for you,’ he said. ‘It’ll be okay.’ I had the mastectomy, relieved I’d been given another chance. But a bone scan revealed the cancer was still beneath the area where my breast had been removed.

Seven weeks of radiotherapy followed. The treatment worsened my MS and I had a relapse. I ended up having to use a motorised wheelchair to get about. Just when I thought things couldn’t get any worse, I developed a terrible pain in my lungs. The diagnosis wasn’t good. ‘The cancer has spread to your left lung lining and some bones,’ the doctor told me. ‘You have about eight months to live.’ ‘Eight months?’ I gasped. ‘All we can do now is offer you palliative care,’ he said. I sat in shock as Tim grasped my hand. I couldn’t believe that after living with MS for 14 years, cancer would rob me of my life. I was just 39. I thought I’d be soon celebrating my 40th birthday not contemplating my death.

We thought our wedding could wait until after the renovations - until a diagnosis changed everything. can we get married now?’ I asked ‘Tim. ‘Yes, as soon as we can,’ he replied, choked.

So we set our wedding date — for just three weeks ahead! When we shared the news with our friends and family, they all came together to help plan our special day. I bought my dress from EziBuy Tim rented a suit and a friend lent a classic car even the hire of the venue was given to us for free. On the morning of our, I woke to see rays sunlight streaming through the curtains.

‘I’m going to try to remember every second of this day,’ I vowed to my friend Donna. ‘You will,’ she smiled. ‘This is your time to shine.’ At the venue, Dad helped me up the aisle to give me away. Mum looked on tearfully. ‘You look amazing,’ Tim whispered.

During the reception, Tim tried to thank everyone, but the emotion was too much for him. I looked around at all the people I cherished, in the room: friends and family from across the country and my brother Will, 31, who’d flown over from Australia. ‘This is the happiest day of my life,’ I told everyone. Since our wedding day, I’ve started taking a breast cancer drug, Tamoxifen, which has reduced the cancer It’s hard on my body and there are days I’m so tired I can barely lift my head off the pillow, but it’s given me extra time. One oncologist has given me two years, another has given me five to seven years —so I’m going with the second one! I sold my business and Tim is now my full-time caret We’re trying to stay positive. There are still things I want to do before I go. I want to do a tandem parachute jump and ride in a racing car! Life’s too short to worry about things like renovating and five year plans. Now I just live day to day, because I want to enjoy every precious moment I have left.

lily88

Hello, is anyone currently active on this forum?  I have read the previous posts and am very moved.

I have had ms for last 6 years and was diagnosed with bc about 6 wks ago

Lily

3jaysmom

kaz: i've  been so sick with the hypothyroidism, and no drug working, i haven't been seeing this forum. your strory reslly amazerd, me, and made me feel like we HAVE to keep trying....Lily: welcome. im not here that much, so im going to PM you, so you know how to reach me. i get email alerts when someone pms me...

   I also, have had remitting relapsing, for over 20 years. have taken no MS drugs. can't now, and its just starting (again) to get mobility challenging... the hypo is my boddy attacking more than the mylein..so, here we go agasin.. please come here with any questions, need of support. ck the old members, p,m them, they'll post here, im sure, and give you support , also. having ms and breast cancer sucks lemons!!!!3jaysmom

Gunther

lilly - boy are our stories close.  I also was diagnosed with MS 6 years ago and have been on Copaxone ever since without any serious relaprses.  Diagnosed with BC 3 weeks ago and underwent lumpectomy 2 weeks ago today.  It all really sucks but at least mine was caught very early and hadn't spread to the lymph nodes.  I just discovered this site last night and am surely glad I did.  It was very helpful for me.  I'm very concerned about the radiation and or HRT.  Afraid of what it will do to the MS and not looking forward to any additional fatigue.

Has anyone NOT follow up lumpectomy with radiation? 

nim88

I had posted earlier on my wife's history (Mar 27 2011 above). We live in Asia but were in the US this summer and it was extremely hot on the East Coast. My wife really suffers in the heat and humidity (not unlike some of you ladies who have posted) but over the last few years her condition in the heat and humidity seems to be worse than it used to be. She has been on Tamoxifen for 2 years which has all kinds of side effects (e.g. cysts that grow to 8cm and then disappear) but on balance we are too frightened to stop it.

Just prior to the summer she had a new symptom - felt her right knee buckling at times while she was walking. While in the US did an MRI which showed no enhancements with the contrast but neurologist said that it was possible that there are more spots especially on the spine (did not have old MRI with us to compare). Sent us off to an MS specialist who said it could be SPMS but to try either Tysabri or Copaxone. However she tested positive for JC Virus so no Tysabri (very dangerous if you have this virus and then use Tysabri). She has been taking a host of supplements and did 50,000 iu of Vit D once a week for 4 weeks and now is doing 5,000 iu per day. Also doing accupuncture and has been suggested two weekly infusions of glutathione (good for MS and bc!). She definitely feels better in cool weather and can walk for longer periods (20-30 minutes) before resting and recovering. Fatigue not an issue - just numbness (in right hand and right foot mostly) and this knee issue of late. She has been on supplements and vit D for about 4 weeks and says her numbness is better. Also took a low dose of oral Prednisone and felt fantastic for a while.Traveling back to the US to see another MS specialist. I've been reading the posts and it is interesting to note that some of the MS meds are immuno-suppresants and therefore can open the immune system up to bc etc. My wife has had double mx and while all nodes were negative we understand there is alweays a risk that some small bc cells got through and are floating around and hence the tamoxifen. So wonder whether or not to go on any MS meds! Equally don't want situation to worsen - all doctor's are saying it is best to slow or stop progression where it is now. Next year an oral medication (BG12) will be approved for MS - so just buy time!

Another interesting point - of late (last 6 months) her E2 (estradiol)(estrogen) levels have been out of whack - first 4x normal and now 2x notmal levels. Tamoxifen does not reduce estrogen production but from what someone else on bc.org said (thank God for this website) it blocks the estrogen from sticking to the receptor cells but that in turn fools the body sometimes into producing more estrogen because the cells feel they are starved of estrogen so make the body produce more. Weird!!!

Gunther - my wife had radiation after her first diagnoses of bc and a lumpectomy. I do not recall it affecting her MS symptoms too much - that was 6 years ago though. Also it may have reactivated her MS (which seemed fine up to then) and that could be why we are seeing some of the effects now but obviously I cannot be sure - so this is just speculation on my part. I do remember checking with the doctor's at the time and they did not seem to think radiation would affect the MS. Ditto with Tamoxifen. But I wonder. 

Lastly, some of the ladies have said this earlier - it is more important to treat the bc than the MS at this point - again based on what I know and have been told, this probably makes a lot of sense. 

Stanzie

nim, that is what my Doctor said - treat the cancer and then the MS. I've been on Copoxone since 2002  and so far so good.

3 jays..... too much to say here will PM you! I'm so sorry! I hate you are having such a horrible time. 

Gunther

OK, what I really want to know, is how do you get passed the poor me feelings that popped up out of the blue.  I think I was a real trooper with the MS diagnosis 6 years ago.  I didn't have much choice as my mother was diagnosed with leukemia exactly one week later.  All time an energy was spent worrying about and caring for her for the following nine months when she passed away.  But now I can't think about anything but me.  Does anyone have any words of wisdom on this.  I try to get out and exercise but my MS doesn't allow a whole lot of that.  I try to always remember that there are folks out there way worse off then I am and than BAM I'm in tears and can't stop.