Multiple Sclerosis and Breast Cancer

hey ladies: thanks for the responses.. i've had my head under the covers, for a day, or so...

  nope, nothing they can do about it.. so far, its just "leaking" it was weird, you can see it, as they take the x rays.. it'll progress, as the ms does.. not a thing to do.. atrphy of some of the swallowing muscles.. i already had the corrective surgery they can do, 10 or so yrs ago.. im just hoping when/if they get the hypo fixed, it'll calm down..

 monday, i'll see the ent.. but, the hospital dr. advised me to put in writng my request for no extrodinary measures, and have it w/me at all times.. so, i did that yesterday.. no way do i want some machine breathing for me!!!lets hope  i don't get there, too quick!!!

  i think trying to do the chef thing at home is a great idea!!! i don't cook much, anymore, but i do bake!!!i always liked desserts better, anyway..

  my nephew went to culinary school here, for awhile.. poor kid. he wanted to cook for me, i was doing chemo, and couldn't stand all the "fancy" stuff!!!he did make great chicken soup for me, by the gallon, though.. i still eat bland, can't do any spices since rx..

  hope you're all doing well......3jays

i did the a/c and taxotere chemo, and yes, now neuropathy just drives me crazy.. weird, it didn't show up during tx, but 6,8 months later.. hmmm

 hope you are all doing well.....3jays

Hi Nana ~ I'm not much of a help concerning your Triple Positive BC question, because I'm Triple Negative. After chemo and rads, there's nothing more for me, unlike you hormone+ ladies.

Don't you have to take the Herceptin for 5 years? Hopefully, it will hold the BC at bay. 

So, your docs say "no" to chemo because it may cause more neuropathy? Can't they come up with a chemo combo that would fit you better? Hmmm. Taxol gave me neuropathy in my fingers and toes, but it is fading. It did, however, make my legs 'gumby-like', and 1 month past my last chemo, my left leg is still weak and crazy. My left leg has gotten hit by MS attacks in the past, so it seems that the chemo affected my weaker parts. I just had my 6-month MRI, and I am stable - NO NEW lesions! I made it through all the stress of BC diagnosis, surgery, chemo and now rads with my MS stable Whew!!! My neuro is not sure about my leg - says to give it more time - it could still be from chemo (hopefully). I asked her about disease progression - could be, but my symptoms/neuro exam were all the same, just a little weaker. Okay - I'll try to be patient.

Nana, sounds like we have similiar MS symptoms, ie: balance, fatigue, etc, but mobile (in that wobbly-sort of way!), so I'm wondering why they are so against chemo. Do you think your age is really that major of a factor? (I'm 58). How long have you had MS? Maybe that is a major factor?

Thanks for the info on Copaxone. I will be starting it this month. My neuro thinks that it would be the safest, at this time, for me. I'll see a neuroimmunologist at OHSU in Portland, OR in June. They have an excellent MS center there, where they run many trials and studies, so hopefully, they'll be able to give my doc a  well-proven second opinion. I know it will actually come down to me...what level of risk am I willing to take to control MS, yet not encourage BC. Triple Negative BC has an annoying habit of recurring in 3-5 years, although then the rate goes down dramatically after that. And I'm supposed to balance that out??? I haven't had 'balance' in my life...forever!

I hope you find some answers at the University. Some days, there's only so much 'adventure' we can take!  ~ Shar

hi Nana: can't help you with the triple positive stuff. er* is my addition..

 i did do lots of chemo.. had a bad reaction to neulasta.. a drug you HAVE to take if you have Adrymycin.. and then, a new onco just titrated my levels of chemo.. i think i finished with 4   a/c. and neulasta, and 24 taxotere.. i did end up with the dreaded neuropathy hand/foot syndrome; and now, they dxed me with "chemo induced" hypothyroidism.. so, there's a lot to consider.. the hypo s the worst of all.. im 61; but my age was never a factor, my health was.. my neuro won't allow any ms drugs, with the er/ cancer. says it opens the door to metastices.. but, others HAVE taken copaxone, etc, and done just fine...it all comes down to what we're comfortable with, what  "feels" best for our situation...

  i wish you you luck with all the decisions.. in the end, we have to decide our own risk factors, what we're comforta

I hope those of you who have taken chemo and/or herceptin will see this.  What did you take for the MS when you were in BC treatment? 

Great trip and consultation.  All the oncologists (3 opinions) say to take herceptin alone.  No chemo for me.  They showed me the stats and putting all the issues together I agree.  Problem - for them and for me is what do we do concerning the MS.  Right now I have stopped the Copaxone per MS doctor request until he can find out more about it and herceptin.  I just called Teva (pharma for copaxone) and they have no data but don't think there will be any interaction.  THINK is not good enough for oncologists.  They don't think it will be a problem but want some kind of data.  If any of you have taken copaxone and chemo and/or herceptin how did your oncologist arrive at the go ahead?

The head onc. at the University Breast Cancer Center feels my MS will be my main problem.  The BC will respond to herceptin and arimidex but is searching for answers on the copaxone.  I don't want to progress to a wheel chair or assistive devices if it can be helped.  I feel so good about the BC right now being attacked but the MS is puzzling me.  

spica16 - My MS Specialist moved to Oregon last year and she was fantastic.  I'm searching for her e-mail address and if anyone would have answers she would.  I hope she is atOHSU and you see her.  Dr. Kiren Kreasa Reahl is her name.  She got a great offer and moved last August leaving me to find a new neurologist.  There are so other MS Specialists in my state and although I have a good neurologist now he will readily admit he is not a specialist in MS.  

Hang in there MS'ers.  Blessings.

Nana..er-.. the npr had + on my file, and it all got confused.. in writing, but not in tx. thank goodness.. no, that can't change.. its either been fed by estrogen, or not. mine wasn'tover 20 yrs ago.. i do use assistive devices, but haven't been "stuck" with one, except in yr two of being dxed from heat.. i was chairbound for over a year, but worked my way back.. Now, the hypo thyroid has me so weak,i use a walker/cane/ chair for long distance, always.. i have a hoveround, and used to have it for malls, etc.. my truck died, so no way to transport it right now.. looking for a van for when the hypo straightens out...3jays.. but they still don't want me near soy, bc i had dense tissue... i hope tha helps..

  i've never been on any med for my ms. in the beg, i was always in better shape than the se's.. but that was  i gotta check my profile, though i think i changed it.. im

Hi Nana2three,

I'm glad you had a good consult with the University oncologists. Sounds like you have a very good team, if "think" isn't good enough for them! 

My MO, who stays up on all the latest research, "thought" that going back to my MS meds would be okay after chemo, but then he admitted to not knowing anything about MS treatment. Thank God he knows 'everything' about cancer treatment! My BS also didn't see any problem with returning to MS tx, and didn't believe that they caused my BC. He's a wonderful surgeon, but I wouldn't go to him for MS!!!

I know how confused you must feel, right now. I have the opposite problem from you - what to do with me after BC tx? By the time I had gone through all the tests, surgery and healing, it was 2 mos. off of Tysabri, so I was clear for chemo. My neurologist said that chemo usually holds MS symptoms - it did for me! (My MRI showed that my MS is stable -at least through this roller coaster ride of BC tx.)

After much contemplation, I've finally decided to try Copaxone. I like being stable! My neuro thought Copax would be the safest way to go, until I see the neuroimmunologist in June. I imagine he will be able to give me a very, very educated "thought". I don't think anybody knows - they need more studies. And...the drug companies/Big Pharma need to be more open about their drugs -the good and the bad. I'm not surprised that you didn't get any real answers when you called Teva - they just don't release any 'bad' info. Unfortunately, the only time they take action is when their stocks are affected. Okay, I'll jump off my soapbox, now...

I wonder what affect Herceptin will have on your MS? It is an anti-estrogen, so it seems like it would have no affect on the immune system, as far as encouraging or preventing it from attacking myelin. Of course, it seems everything affects OUR immune systems!

Wish we had better answers...MS-life is difficult enough.

Nana, I checked OHSU, and Dr. Reahl is not on staff there. Of course, Oregon, especially Portland, has lots of good hospitals and universities. I hope you can contact her.

Keep pushing for answers ~ Shar 

Hi Shar,

Great memory......I finished on Tuesday. So glad its over, i need to forget about the CA for a while. An everyday reminder suxs. How are you doing?

My Tx went really well. NO tightness, NO burns, NO blisters. Just a very hard nip and dark breast and lots of new freckles. BUT....My diabetes went out of control and the RO never warned me of the SE. I went to my PCP and when he checked the sugar level in my blood it was 365 or 385 and the 3 month check was 8.7 (under 7.0 is normal) WTF, I had to find out via the internet that rads can cause diabetes. Was it not important enough???? I could have gotten a fast acting insulin to control it. TOO late. Is he ignorant? Well at least my MS was not effected.

I hope you do well and your skin doesn't deteriorate. But it does heal. I'm sorry about the tight skin. I read somewhere that the creams and moiturizers don't help so I rarely used them

WOW.........42DD. You look like a petite little thing in you pix. I'm now a 34C on the CA side and a 34DD on the otherside. I'm going to have a reduction as soon as I heal from rads. The nurse told me to expect worsening for 2 weeks after tx ends. Hang on and in and take a break from rads if you feel you need it. I took a week off before the boosts started and maybe thats why my skin held up so well.

Treat yourself to something really good. YOU DESERVE IT!!!

Maureen............xoxoxo

Shar, i was so angry that the bs left the dog ear on me!!the ps refused any recon, bc of my health, and he still left it!!!had to go thru that surgery, as well. when it was done, i realized i had truncal le all the time, but the dog ear hid it.. i can wrap the area, and there's no swelling.. i swear, i hated those damned ears more than the scars, and theyr'e bad..

  im not doing well with the ms at all.

 the ms dr told me to get my "papers" in order.. the ms is headed near, very close to the brain stem, and im infiltrating to my lungs.. its not bad, and if im careful, it could stay this way along time..

 the problem is : we can't tell if ive started THE slidef from ms fatigue, or its simply hypothyroid.. so, im still going to think its hypo, and try to tolerate the synthyroid.. if the tsh is good next time, we'll add symmetyrl and hope i pick up a bit.. im sleeping too amny hours of the day for my likeing. getting weaker and weaker.. but, hypo and ms does that, so i'll eat/drink carefully, and time will tell.. sorry its a downer..........3jays

3 jays - I also wrote to you on another thread but thought I'd check back here as well. I'm hoping they can really get a handle on the thyroid and you symptoms improve. I'm just so sorry to hear of all this. Don't forget you are dealing with so much now there has to be some depression in there too which also brings on fatigue. I'm hoping the butterflies lift your sprits and some sunshine helps a bit! 

I am er/pr+ and had never heard about Copoxone opening up mets. Any idea where I can find more info on that? 

3jays- take care and know we are all here for you. Hang in there!

Hi Stanzie,

Good luck with finding information on MS meds and BC. It is a territory not very well researched.

My neuro just put me on Copaxone - yesterday was my first shot. She figured it was the least dangerous in respect to BC recurrence, because of the amino acids and it's method of action. It seems it doesn't keep all the WBCs out of action, so there is some immune system recognition to invaders. Of course, it's efficacy is not as good, as say, Tysabri. I had 47 infusions of Ty, which held me beautifully, at least until my sudden, shocking DX of BC. Was it the culprit??? No one really knows.

I am seeing a neuroimmunologist in June. Hopefully, he can shed some info on all this, with a second opinion. Unfortunately, there have not been enough studies done to reach any real answers. And...we need answers, because choosing between BC and MS is not much of a choice.

Let us know what you find out ~ Shar 

My neurologist told me to stop Copaxone while on herceptin.  I'll be on herceptin for 1 year and already my MS is progressing.  Stopped Copaxone the end of January.  I called Shared Solutions with Teva Pharmaceuticals and they could not tell me to continue since they have no data on interaction with herceptin.  I want to stop the HER2 BC but I also want to be mobile and I am afraid by doing nothing for the MS I won't be walking very long.  My legs are feeling stiff and weak. 

Copaxone has worked for me for 8 years and now nothing.  Thinking about all of you having to deal with getting the right meds.  Most doctors don't know what to do with us and there is so little scientific data missing cancer and ms meds.  Blessings.

Here are a couple of links of me in the media recently!  They are New Zealand sites so hopefully they show for you.

 http://tvnz.co.nz/national-news/good-sorts-tim-leatham-video-4717469

 http://www.stuff.co.nz/timaru-herald/news/6406215/Karens-courageously-fighting-destiny

That parachute jump mentioned in the article is on for tomorrow, eeek!  A local company is giving me a free jump. 

Hi spica16,

Thanks for comments.  My MS was not aggressive before Copaxone.  Actually, most friends did not know I had MS.  I taught high school and until the day I retired never missed a day because of the MS and only close friends at the school knew I had MS.  I just chose not to let it define me and live life as I would have without it as long as I could.  

The leg business is not fun.  It may be the herceptin since some who take it do have muscle and joint aches and pains.  Of couse, I don't know nor do the doctors since it could be the MS.  I feel like a wimp complaining about it and I will try to curtail my rants.  Just going to think positive that the herceptin is going to take care of the HER2 and then some miraclous drug will come out to take care of the MS.  Gilenya and Tysaybri can not be taken with herceptin.  Copaxone is unknown relating to interactions.  

You are right about only worrying ourselves.  I am going to spend my energy bugging the drug companies to push for a cure of both MS and BC.  Blessings.

Hi Chef127, After the awful BC roller coaster ride, parachutings a breeze............and it's my choice to do it. BC and MS gave me no blimmin choice, although I guess I could have chosen to opt out of BC treatment.  I wouldn't be here now though, sigh.

Anywho........ I DID IT, OMG WHAT A BUZZ!!!!!!!!!!!!  Man I feel sooooooooo alive.  What an adrenaline rush.  This will be in a newspaper and a magazine so will post them when they are.