Multiple Sclerosis and Breast Cancer

nim88

Yes Gunther it is a tough situation. But feel the support from your loved ones and friends and the fantastic ladies on this site. Keep in mind that medicine is advancing at a very rapid pace for both these ailments and hopefully there will be a big breakthrough in the not too distant future. It is important to try and relax the body through things like meditiation for a short while every day - this will help both MS and bc!

3jaysmom

hi Gunther, there are many of us here, dealing with multipule issues, none of the least MS; along with bc. i have many health "challanges" also...

 its' my experience, that not everyday is a good one, and i let it be. More than that, i fight for the right to ALL my feelings. i don't subscribe to the "always think positive" school. life can be very challenging. and, exhausting, as we fight for our QOL...

   most of all, i try to cut myself as many breaks as i can.. if im sad, i cry. its' a great release... i find myself fslling into a pit, sometimes,  and thats' the dangerous times. i allow  myself 3 "mental health days" where i will veg, cry, rant (to myself ) and then, i do some kind of excersice... i let the endorphins kick in to help me. im not too mobile at the time, and am fighting a period of extreme fatigue; so, its not excersce as other ple do, but

any moving around with my body does the trick...and i ALWAYS make sure i go outside.. if only for a little bit. isolation makes the whole thing worse...

 please feel free to PM me anytime. we'll talk in private, or here, either ones' ok with me......3jaysmom

rasksc73

I was diagnosed with ms 4 years ago amd am finally feeling good after taking Tysabri for 2 1/2 yrs.  Now this week I have been diagnosed with breast cancer.  I was totally shocked.  I haven't been staged yet.  I have an mri next week.  My daughter is a chemist and thinks there has to be some connection.  Now that I have found this discussion board, I think she may be right.  What have you learned and where do I start?

3jaysmom

hi, 3jays here... there's been some contoversy on this; BUT.. i'd check with myy neurologist... since all MS meds are immune supressants, some neuro (mine) say no more ms meds. they open the door to more bc.. have a consult with him/ her for you're own peace of mind... that's just my opinipon, and what i decided on... 3jaysmom

nim88

rasksc73 - I agree with your daughter - there has to be a link. In my wife's case she has to date never been on any MS meds (though she did take traditional chinese medicine for a few years) and yet she has had two primary occurrances of bc - once in 2005 (left) and once in 2009 (right). She had a double mx done after the 2009 episode. Now her MS is playing up again as described earlier so we are talking to various MS specialists as to what to do.

3jaysmom - from your discussions with the neurologists is there a difference between a double mx case vs someone who has had reconstruction or still has breast tissue? I have found so far that the neurologists don't know enough about the breast cancer stuff and the oncolgists don't know enough about MS. It is only on discussion boards like this that we can see what different people are going through and then ask the questions.

Many thanks for all your posts. I will update after our trip next week to see MS specialists. 

Moderators

Our Mixed Type Breast Cancer category was recently expanded to include those who have breast cancer along with a different disease or condition. It's another place to talk about the challenges being faced by members with more than one diagnosis.

Judith and the Mods

Stanzie

Thanks Moderators. I'm on Copoxone and my neurologist said I can keep taking it as it supposedly has the T-cells attack what they are supposed to rather than the nerves. He said it wouldn't interfere with whatever treatment I ended up having. Hope he is right.

My gyn who was the doctor who followed me the most said he wasn't surprised at the BC diagnosis as having an abnormal immune system opens us up to more things. 

Speaking of mixed type breast cancer - I was diagnosed with LCIS at the same time as DCIS. Anyone else have this?

3jaysmom

just speaking for me/ my neuro.. he says ANY ms drug works as an immune supressor; of course, to slow it down.. so, with BMX; or lumpectomy (which we did consider in the beg.. he told me... pick.. tx for bc; or ms supressant. i know some ladies have stayed on them, though. different neuro's diff opininons. since i never tried a suppressant, i opted to none..HOWever, i now have hypothyroid, and they believe my ms is attacking the thyroid gland.. so, which is better? a gun, or a knife? i feel like since ms; its' always that kind of decision... good luck with all your decisions.. as long as your comfortable ( or your wife is ) with the decisions you make, you'll do good.....3jays

3jaysmom

sorry, stanzie just in ditu for me...3jays

3jaysmom

another good thread here is having another immune system disorder , and bc....3jays

tinkangel

I was Diagnosed with MS in 1982 After my son was born, Last week I was DX with BC have done one Lump ectamy sp. and am getting ready for another one. My son is now in MED School and he is very helpfull with all this. I am Terrified! I own 2 horses one is 32 the other one is 21 I am an active member of COMSU "central ohio mounted search unit" for heat I wear a Cooling Vest and that helps me deal with the heat now with Radiation possible my body cannot even tolerate warm showers! My Neo. tells me my horses keep me "ballanced" I have NEVER gone more then 1 week without caring and or riding. That in itself will kill me not the MS or BC!

Anonymous

If you were taking Copaxone before you were DX with BC, you should read about this small but interesting study.  

"Teva slips on reports of study linking MS drugs to cancer."

 By Nitzan Cohen and Yoram Gavison

"..The research revealed that treatment with Copaxone increased the chances of contracting breast cancer to greater than that of the general population. The other three treatments reduced the chances by 48 percent.."

Stanzie

I am taking Copoxone and have been on it since 2002. I did ask my neurologist about this and he told me..... something!!!! Now I cannot remember at all. It made me feel like it was alright to take it though... wish I could remember. Anyone else on Copoxone?

3jaysmom

not on any drug; as ive said before, and this article seems to add to the thinking: all ms drugs are immune suppressors, so open up, not just to bc/ but to reoccurences of bc; as well... food for thought......

 have to add though,, yesterday i was told that bc i don't take an ms drug,, its' now attacking my thyroid.. gun/knife question, don't we all have to deal with them!??!  .....3jays

Kaz12

An update:  In Jan 2010 I was told that the BC I thought I'd beaten had spread to other parts of my body.  That was an awful year, even though I had an awesome 40th b/day party and got married, the news that I'd live only about another 8mths trumped everything, unfortunately. 

21 months on and I'm still going strong.  What a great year 2011 has turned out to be: a racecar ride, a magazine article, I'm going to be on national TV on 5th Oct and (totally unrelated) the New Zealand MS Society has named me Person with MS of the Year, I'm travelling with my hubby to the awards in 2 weeks.  Neat eh?  Life is good.  I want to go out with an almighty BANG, so far so good :-)

3jaysmom

CONGRATULATIONS girl.. WHAT a year you've had.. and to the GOOD side, for a change... H&K,      3jays

Kaz12

Thanks so much 3jaysmom.  As Steve Jobs said:

 Because almost everything - all external expectations, all pride, all fear of embarrassment or failure - these things just fall away in the face of death, leaving only what is truly important."

"Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart."

3jaysmom

aint that something we're ALL learning, wherever we are in this journey?!..............3jays

Gunther

I'm curious about the use of aromatase inhibitors and MS.  Is anyone using those and does it have any adverse affect on your MS symptoms.

PeggieQ

I am 64 years old.  Diagnosed with MS in 1977.  Pre-cancerous flecks 15 years ago, and breast cancer in the other breast this year.  I did not have chemo, but had radiation, with minor exacerbation of MS.  However, once it was over, I was put on Evista and then Exemestane and both triggered MAJOR MS exacerbation, i.e., blurred double vision, no balance, no memory, pain, depression, burning legs and feet, with numbness in hands and feet,  and so many I  cannot list.  I decided this month that quality vs. quantity is best for me.  I don't want my chances increased (when risk is low to begin with), and be alive but not living, due to major exacerbation of MS.  No driving; can't carry on a conversation; can't walk from here to there without holding on, choking on food, etc.  But the choice is and should be the patient's!

3jaysmom

Peggie; i felt the same way re: QOL; so although i tried all the als; i failed them all, getting sick. so, for awhile, i did the grapeseed et al protocol. now, the drs say don't do any of it!!!

   the ms has attacked me from every angle over the past 20 yrs; but this time, its' GOT me. they said its attacking the thyroid, inflamation of a small mass; but my ms fight off the synthyroid.. im kinda titrating it down, like they did chemo for me... who would've thought (I sure didn't ) the ms would knock me down from mmy thyroid!!!makkes sense tho. i could never take fiddling with any hormeone... ah, its a wonder we keep what little sanity we do, with all this bull!hahahaha........3jays

nim88

Back from  visit to MS specialists in NYC. Due to BC many meds are not appropriate for my wife - e.g. Tysabri, Novantrone, etc. Doctor has suggested relatively aggressive treatment to stablise condition/progression and medicine recommended is Rituximab (Rituxan). Since my wife has just started feeling a bit uneasy walking for a reasonable distance tried Ampyra while we were there but she felt jittery so Doctor felt that maybe 10mg dose too high and has asked her to try 5mg of AP4 which is basically the same compound that Ampyra is made of. Will start in a couple of days.

The other MS specialist said to try Copaxone and pulse methyl prednisolone to see what happens. Felt Rituxan may be not be necessary at this stage. 

Right now we are trying to assess the risk/benefit of various options also keeping in mind that we don't want to get to a "stage" where we have to go more aggresive. If that stage is inevitable maybe more appropriate to be aggressive now!

Also looking at CCSVI therapy which seems to improve some peoples conditions. Like this very helpful board there are a couple of good MS Boards (ThisIsMS and MSWorld) which have a people who have tried these therapies. However, not able to find both BC and MS on those boards yet. 

nim88

I should also add that one observation made by one of the specialists is that in 30-40% of women menopause has a negative effect on MS. Therefore, there is likely a correlation between going on Tamoxifen and my wife's MS acting up since in her case the Tamoxifen is trying desperately to put her into menopause!!!

3jaysmom

thanks for the info:nim88; im gonna ck with my neuro; who said any ms meds open up chance of reoccurence, as they are immune supressants. gonna ck that one out on him.......3jays

nim88

3jaysmom - one thing to note when talking to your neuro is that Rituximab is not FDA approved for MS use but it is FDA approved for certain lymphoma's and Rheumotoid Arthritis. Because of the breast cancer history many of the MS drugs, as you have pointed out which are immuno suppresants, are not ok for her. This one targets the CD20 protein of the B cells from what I can tell and according to our onco (who I just finished meeting) should be ok for someone with bc. So when given in the US it is given "off label" and out of medical necessity!

topless

I've had MS for over 20 yrs and have been on Avonex, Copaxone, Novantrone and now Tysabri.  I had just had my 14th infusion when I was diagnosed with invasive mucinous breast cancer.  I opted for bilat mastectomies because the tumor was never caught on mammograms , just the calcifications.  I had lumpy, dense breasts and I didn't want to constantly worry about the other breast and go through frequent mammograms and biopsies.  Also to get chemo and radiation I would have to drive more than an hour each way and I knew I couldn't handle all that with my MS symptoms.  I've had a bad couple of years with MS and was just starting to feel better and then I got cancer. 

momof3sofar

Just checking in, I know it's been a LONG time. 

I was diagnosed with MS in 2009 and DCIS in 2010.  In Dec of 2010 my DIEP failed on the left side and I had it removed.  I was not on Rebif at the time.  I stopped taking the MS drugs when I found out about the cancer.  Went back on Rebif in Feb and had a LD flap on the left side on Aug 1st.  It now looks as if that has failed too.  I will see my actual doctor on Tuesday (his first day back after a 2 week vacation) but it doesn't look good.  I wasn't on the Rebif when the DIEP failed but that is microsurgery and I know there is always a chance it won't take.  The LD flap however is just moving the muscle and keeping the blood source.  I wonder if the Rebif however might have had something to do with this failing too?  Who knows!

If this has indeed failed as I suspect I am going to just have both sides removed (the sucessful TRAM flap and this LD flap) I have had nothing but problems and I'm tired of surgery!

Kaara

3jaysmom:  My boyfriend takes a once a week injection of Avonex for his MS, which is not supposed to suppress the immune system.  He also takes 8,000 IU's of Vitamin D-3 daily to keep his immune system functioning at a high level.  He has a few balance problems, but still plays golf three times a week, and exercises daily.  He never gets colds or flu, even when directly exposed to them.  He was diagnosed 12 years ago, but probably had it 10 years before that.

3jaysmom

kaara; i just sent you a pm. its in your "home" also, i've upped my vit D since i read your post about your boyfriend.. im up to 4,00 so far. having it cked in 2 weeks, if its still low, my dr. said we'll go up more...thanks. i AM feeling more energetic since i started raising it......3jays

Kaara

3jaysmom:  I'm taking 5,000 myself, but should probably up mine now that I am going through this dx.  I'm scheduled to have it checked in mid November anyway, but it was very low (30) last year, and should be 50/60 or higher minimum.