Multiple Sclerosis and Breast Cancer

momof3sofar

No Rebif was the only thing I had tried so far.  I was on it for 10.5 months.  In that time the lesions I had did shrink and although I had a few times that felt like flares they say I had no new lesions on my MRIs.  Tsybari seems too scary to me at this point as do the new pill forms of meds available.  I am going to give it another try.  I went off it mostly because of the costs, I lost my copay assistance right before I was diagnosed with BC.  I spoke to MS Lifelines today and they say everyone now qualifies for the copay assistance and with the BC diagnosis I might even get it free for at least 3 months.  Not the news I wanted but I know it could have been worse.

 I sure hope you can find something to help, it sucks to have one of these, to deal with both is....well....a #($%&!!!

 Dawn

Kaz12

Dawn, I think you just described everything in a nutshell

 Kaz

3jaysmom

amen!

Stanzie

What is MS Lifelines?

ducky2020

  Lifelines is a company you can talk to and they help.  Rebif is the company that seems to use it the most. that is where I came in contact with them.  They have nurses who will answer questions about most anything. they have information on how to document shots and appts, etc.  I really had good experience with them, You should check them out.  Your neuro should be able to give you a number.

ducky2020

  Just thought I'd weigh in on the infection problem.  I haven't had a mastectomy just a lumpectomy.  But after ten days and 1000 mg of Cipro a day it just doesn't seem to be alot better.  Will call Dr. in AM to see what can be done or if this is normal redness and lump near the nipple.  So frustrating.  My neuro has me scheduled for MRI's on the 7th and I start radiation on the 11th. but I don't see them for the results of MRI's till 3/1/11. OMG!!!  I am having trouble walking but....   It is truly a pain not know what the radiation will do to the COPAXONE, and if steriods are needed what will happen with that.  I start the FEMARA in the morning.  Guess what no telling what that will do.  NO ONE IS LISTENING in the medical field and I'm scared s#@$less!

3jaysmom

hey Ducky.. can you see ANY of the DRS. before march?? thats' too long to wait to hear results!! i just went and got copies of my MRI when i had mine done. they give me the disc that day; but i can't make head nor hair of that. then, i go back 3 days later, and get the written report.. it'll be frightening, if its' not good news, (like mine was) but, it's way better than waiting.. that long is just ABUSIVE IMHO.. 3jays

ducky2020

  I agree with you. It is to long but the Nero I have has a PA who is dumb.  When I have the MRI"S done on the 7th I'm going to change the appt.  I have to know what happens when I do radiation and COPAXONE together.  PA won't be happy but... oh well. 

  I see the surgeon 2/1 to look at infection problem again.  It hasn't gone away yet and it is sore.  The squeeky wheel is the one that will get the grease.  So, I will squeek 1 ALOT.  Thanks for replying to me.  Believe or not just reading what others say that have this is so helpful.  I come in and read these since I can't sleep. It helps.  THANK YOU

IC10021

Hi, again gang!

--- Sorry I seem to have missed the holidays! Seems they disappeared somewhere in-between surgery & radiation. Wishing everyone a HEALTHY new year! Sending out love and laughter for Valentine's Day!!

--- Concerned for Ducky2020. Looking forward to hearing she contacted ANY doctor or went to double-check at an emergency room and to know she is well on the road to healing.

--- My update is: [after two surgs, 1) "calcifications" in Oct 2010 2) "br ca" 0.1m w zero nodes Nov 2010 & w infection & antibiiotics following each]...in early Jan 2011, I started radiation of the entire R breast and am now past mid-way through 5-weeks of DAILY-TREATMENTS with about 10 treatments to go.

--- Due to MS heat-intolerance and fatigue, I haven't done any activity "daily" for five weeks straight in a very long time. So far, in the past three weeks, I've only missed only 2 Mondays, due to MS-related symptoms. Although I had the option to do RAD treatments for a shorter period of time (3 weeks) at a higher dose, I declined. Bottom-line, I am experiencing more fatigue & related, but that would be expected for ANYONE who has been in treatment for BR CA for 4 months.

A god-send gift was that I got some help at home from the NMSS-NYC. Otherwise, I would not be able to keep up with practical chores involved in self-care (laundry, errands, reminders, for ex.) and my situation would rather quickly deteriorate. (I live alone.) That would be frustrating and upsetting. In my fatigue and tears, no doubt, I would likely be headed for an accident or a fall without the help.

--- Cumulative stress is a significant consideration. Travel-stress from trying to cross snow-laden streets and manage on wet & icy sidewalks has affected my ability to get to treatment every day. In NYC, snow still seriously interfers w anyone traveling around the city, including anyone in DAILY TREATMENT FOR FIVE WEEKS STRAIGHT. Traffic is impeded, people have little patience, and risks of falling on snow or ice are v real, even w/o MS.

To ease my transit everyday, I started using my para-transit pass again, both to get to treatment and to return home. This helps me steer clear of jostling and lets me rest during prolonged commutes that I tend to encounter during rush-hours.

--- RAD-treatment-wise, mostly I am bothered by vertigo. It is my poor balance (due to MS) that seems to cause the vertigo. Just walking, standing, etc. is a challenge as I must always actively "balance" myself and make sure I am safe and not falling (esp lately in snow). As "me-the-patient", I feel esp vulnerable while lying prone and remaining still and not being able to see what is around me and permitting the huge, intimidating RAD machine to piviot over and around me during the beginning-middle-end phases of tx and trusting the people who give me the treatment to move me safely around and steer me clear of the moving machine, which I pray doesn't get stuck or lurch or fall on me while I can't see it or move to get out of its way!

In my third week of this, the techs know not to move me without warning me!

Next stop, tamoxifen. Will give you an update then.  

--ic

ducky2020

  I am now on second round of antibiotics.  The surgeon did try to asperat from the lump but foundnothing.  It is still red and a sore but maybe this time the med will work.  Have MRI's tomarrow  See Dr. on tues so we will see what is happening I guess..   My radiation starts on the 11th.  Wish me luck. update things later

3jaysmom

hey guys, wanted you all to know that the PET scan said im dancing with NED! which is the happy news. since the ribpain, balance, and other symptoms are'nt the BEAST; the drs are saying MS..so,, off to the next rounds of tests.. but, not so scarey.. ive accepted where im going with that disease.. and, im as ready as any of us can be.. Cancer, is a whole other thing! IC.. you sound just like me. except, thank God, i don't have to fight the snow and ice  (((((sorry))))  that must really be difficult. my balance has been really bad lately.. am having tmj problems from teeth breaking after chemo. that sends my ears off, and boom, im falling.. i forget that a is connected to b sometimes. its' such an evil disease, cancer , and then the MS!!it still boggles my mind that i have had both!! good to see this thread active again. we're a small group, but a resilent one.    3jays

Stanzie

3jays mom- Thank goodness you were way ovedue for some good news and NED is always the best!

ducky2020

     Well, it has been a few days but at least I have news.  The problem I'm having with the breast isn't an infection.  It, according to the oncologist, is a seroma.  No infection good, problem bad, however.  It is a leak in the system. Lymph system, they nicked or cut something so I may have it drained off and on for sometime.  Already had it done twice and it is filling up again.

   I also saw the neuro, he says I have more lesions and they are bigger than they were.  He plans on changing my meds to Tyburis? and he thinks I should take the pill that makes it easier to walk.  Not so sure.  I just want to walk with out pain.  Not totally convinced he is on the right track.  He also is sending me to see another surgeon to check the spinal cord.  Might have to have surgery to fix the cord.  When it rains it pours. It is just frustrating to get all this dumped on you at once. Oh well this to will pass. It has to! Doesn't it????

momof3sofar

3jays: CONGRATS, that is very encouraging news that you are NED.

Ducky:  I'm sorry things aren't going as well for you.  HUGS!

I received an interesting phone call yesterday...My neurologists office called me to ask me some questions, it seems that the MFG of Rebif sent them a letter asking them to fill out stating I had an adverse reaction to their medication....IE my breast cancer.  It seems odd to me since I am taking their meds again.  I talked to their risk management department back in the fall when I stopped talking Rebif but no one there said anything about the Rebif causing the cancer.

Just thought I'd pass that on, I don't know what it means but I think I am a "statistic" or something now.

ducky2020

  I talked to the nurses at Shared Solutions and they said that during Copaxone trails they didn't address the Breast Cancer issue either. Now they apparently are tracking patients that have breast cancer.  They took all my info and said they'd check back with me in a few weeks.

  Interesting I really didn't read the RX pamphlet but I have since surgery.  It says that Copaxone can cause cancer of the breast too.  Interesting.  things are a little better now that I know what a seroma is.  It is a cut or nicked blood vessel.  Normally they close off on their own but mine is still leaking.  MS problem since I don't heal well.  We will see.  Glad to know you all are out there, Happy Va;entine's Day!  God Bless you all.

firebird25

Has anyone with MS attempted reconstruction with implants after a bilateral mastecomy? My mom is 58 and has both DCIS and multiple sclerosis. Her plastic surgeon is worried that the implants will weaken her arms extensively since her arms are already weak from MS. He doesn't think she should risk it. Has anyone experienced similar concerns? The surgical oncologist says we should take that chance anyway, because it might not weaken the arm too much and so we will attempt to do it anyway.

Stanzie

ducky2020 - Really!!! I've been on Copoxone since 2006 and I did NOT know there was any connection. Can you tell me more?

Firebird - I don't know about the arm weakness - my first thought is if her cancer doesn't involve the lymph nodes I'm wondereing why reconstruction would make her arms weaker. I have MS and had double MS and had immediate reconstruction with implants. 

3jaysmom

ok, so since my tests came out non cancerous, ive had occasion to consult w/ nuero. he said ALL MS drugs are immune supressants( we knew that ) but, that means, it opens a pathway for cancer.. the immune system that generally kills off the ca. cells is supressed by the drugs. exactly the reason im not taking, and don't plan on taking any. if ya goota choose, its; a gun or knife situation. and i cannot (please God!!) go thru the cancer thing again.. of, course, that means im in for a hell ofalot MS wisee.....

firebird25

they are only now starting to look into how copaxone affects cancer. read this: http://newsgroups.derkeiler.com/Archive/Alt/alt.support.mult-sclerosis/2007-08/msg00115.html it shows that more research is needed but so far research is not conclusive. My mom is also on copaxone for over 5 years and as soon as she hit menopause, she developed cancer. It's really tough to be placed in the position of choosing between cancer and MS worsening.

Stanzie, my mom's cancer does not involve lymph nodes. So your arms didn't become weaker after reconstruction? I heard that women can't pick up their arms after implants about 50% of the time, but it goes away with therapy to the shoulder. I am glad you didn't experience any of that.

Stanzie

Thanks firebird for that information. Hmmm? I don't think it says when the earlier studies where conducted - if I had known there was a chance of BC I wouldn't have used this drug. It would have been nice to have been informed.

No I didn't experience any weakness in my arms and very quickly had full range of motion using my arms with no problems at all.

3jaysmom

just a fly by to check on you ladies. you're always on my mind. sending good thoughts.. also, who here is primary secondary? my memory fails me. i have questions. is it you, stANZIE?thanks. 3jays

Stanzie

Nope I'm relapsing remitting.

3jaysmom

thanks, stanzie. thats' good news. ill go back and see who it was. i could use some experience, hope and strength right now.      3jays

mom_of_2

Hi...I am new to this thread and am looking for some answers. I was diagnosed and treated for DCIS and IDC in 2008. Yesterday I was diagnosed by my neuro-opthomologist with M.S. I spent a week in the hospital with optical neuritis and had multiple MRI's of the neck, brain and eye followed by an LP. MRI show some areas of plaque and LP showed protein bands. Technically I need to have one more event before the diagnosis is 100% but they are 98% sure now. I am having another MRI of eyes and brain in a couple of weeks. Then I will have a follow-up with a Neurologist who specializes M.S. My question is....is anyone on this board taking M.S. drugs? Neuro-opthomologist said no one will put me on M.S. drugs because they will compromise my immune system which need to stay strong and intact to keep cancer away.

 Any advise is greatly appreciated. 

3jaysmom

ok,hi mom of 2.. i think im the only one who is NOT on a drug.. my neuro consult said the same thing you're dr. said. any suppressant of the immune system would open up a chance of reoccurence of bc. however, ive had ms dxed for 20 yrs., and have done ok without them. it progressed a LOT during chemo, but it was bc it was progressing, anyway. many, many of the ladies here have taken their ms drugs, even during tx.. if noone comes along soon, go to thier names in blue, click on it, and personal message them. noone but me seems to come here much, anymore...  you can pm me anytime, too. im here 1-2 a day at bc . org..    3jaysmom

3jaysmom

"hoppy you're here..sorry why you are!   3jays

Kaz12

3jays, love your welcome frog!  I come here occasionally and read through new posts, I guess people just get caught up with life, sigh.  In an earlier post I said I wanted to go for a hoon (fast ride) in a race car.    It was a bucket list item seeing as I'm now stage 4.  Well, this Friday some friends have arranged for my to have one at the local racetrack!  O. M. G.  Not long to go now, eeeek.  Really looking forward to it though. 

 "Hoon" is a New Zealand term cos I'm in NZ.  Not far, 100 miles, from that horrible earthquake in Christchurch last week.  This is so devastating for our little country of just 4 million people :-(

 I hope everyone is well, cheers Karen

momof3sofar

WOW Karen, that sounds like FUN!!!!!  I saw the news about the earthquake and how devestating it was. That had to be scary!

 I am guilty of being busy but with homeschooling a 6 year old and trying to get my scrapbooking caught up I guess I have a good excuse.

Mom of 2, welcome, I'm sorry you have to join us as well.

I am back on Rebif as of last month.  I had gone off of it for 3 months after being on it a year because of financial issues (co pay went significantly up) I must say I really wish I didn't have to go back on anything but they found another leison on my most recent MRI so they don't want to take a chance.  I hate the shots, I hate the bruises they leave, the crappy way they make me feel....yeah I'm not exactly a salesman for drugs.

Keep us posted with how you are doing, I wish you didn't have to jump on this sinking ship with us!

Dawn

Stanzie

I'm on Copoxone but I will say I don't always do it. Up until recently felt guilty about that now  not sure what to think..... I'm sort of taking it easy with the drugs till my next neurologist apt. and want to ask a lot more questions about this. Supposedly he thinks I've had MS since I was about 12. If so then only have been treated since 2002 and can't really tell much difference except getting BC!

I now just have a LOT of questions so not sure what to say other than I'm going to try and read a lot more about these drugs. Sorry I can't be of more help but if I can answer any thing feel free to ask.

3jaysmom

hi ladies, glad you all dropped by. i come and check often.  the same for me. im gonna go to Miami to the big MS clinic for a new eval.

   my latest MRI was a new magnet, stronger, so i don't know how old the progression really was. won't i guess, till next yr. with the same machine. i want some real answers about the meds. but, at this point, its a QOL issue as well. i don't think i can do the flu stuff, with all the rest of it. i'll only do copaxone, as far as i know so far. last neuro said any inteferon drug will open me up to bc again, cause they supress the immune syatrem. have you guys been told that, also?

   who knows anymore!!!it gets which would you rather, a gun, or a knife.. answer .... a LIFE!!! haha     3jays