Multiple Sclerosis and Breast Cancer

Hi ladies, thank you for sharing your experiences managing the double-whammy of MS & BC.

Is there a preferred MS website or forum that you could recommend? I have found such great support on this site. Now dealing with some other health issues and was recently referred to a neurologist. I have so many questions about the possibility of MS but haven't been able to find a great MS forum like this BC one.

Thank you so much.

Dale

Thanks so much for the link, Nana2three. I'm doing really well, thank you. (Just a little set back today - was supposed to start my radiation treatment this afternoon but there was a machine breakdown so they will have to reschedule my first appointment. Back to the waiting game!)

My best to everyone following this thread.

Hi akmom,

Welcome!  I really like this blog: Trevis L. Gleason's Life With MS. He is on Facebook, Twitter, and at www.everydayhealth.com. Trevis is a chef, writer and now an advocate for people living with MS. He is from Seattle, and is living with secondary-progressive MS himself, since 2001. I  haven't seen any threads on BC&MS, so we may have to start one.

Good luck with your journey thru rads. I just finished mine on Friday...in fact, I am completely done with BC treatment! I have a month off until my next check, where I should get the rest of my schedule for future checks, tests, etc. What will I do with all this free time??? (Clean house, do yardwork, grow hair...)

Take Care ~ Shar 

Thanks, Shar ~ enjoy your "month off". Here's hoping your hair grows like the proverbial weed! xo

Weed = a plant that grows where it's not wanted.

Yep, akmom, that's the story of my hair! I'm already 'weeding'...tweezing, shaving.

Head hair is growing fast. Yah! 

All the rest...it's back from vacation, too. Oh, well ~ Shar

Hello and Welcome, LegalSec, 

Please don't feel alone - we have all faced some form of these hard decisions. We all know about being "scared" - you have every right to be - but, hopefully, we can ease your fears, by sharing our stories with you.

I, personally, was originally diagnosed with Stage III, Grade III BC. I had 1/11 positive nodes. My Her2 also came back negative. Turns out I am Triple Negative = ER- PR- Her2neu-, which is an aggressive, fast-growing BC. The size of the tumor was originally estimated to be around 11cm (Yikes!) by diagnostic mammogram and US. Then breast MRI brought the size estimate down to 7cm. When I saw my surgeon for consultation, he told me that he could do a lumpectomy, but I "would not be very happy with it", because it would severely deform my breast, with that amount of tissue removed. After surgery, he told me that the mass was the size of his fist, but only pathology could give a definite answer, because he didn't cut into the suspect tissue. When the pathology report came back, it turned out I had a 4.1cm primary tumor, with 3 tiny satellite tumors, all encased in reactive tissue. (Sort of like space aliens in their escape pod?!)  Triple negative often does that, plus I had a history of fibrocystic breasts. I ended up having a right modified mastectomy with axillary excision, due to the positive lymph node. The final pathology report downgraded me to Grade II (Yah!!!).

It was sad to lose the right girl, but with a report of good clear margins, all around, I feel confident that I made the right decision - for me. Knowing I did everything to eradicate this beast (chemo and radiation followed), I feel like I can now get on with my life. I'm in my second week post-radiation, post-active BC tx. Now my attention has turned back to MS.

I, too was on Rebif, for 4.5 years. I did well, until it stopped working for me. I then went on Tysabri, until the BC dx stopped that. I was on Ty almost 4 years. I've been living with MS for over 9 years.

My neurologist told me that chemo usually holds MS at bay, since it affects the immune system, as well. I had no MS problems during that time, except that Taxol does cause neuropathy in the fingers and toes. However, it is fading as time goes by, so was not a big problem for me.

LegalSec, we are all different as to how we react to tx, so no one elses story will match yours, perfectly. The best advice I can give to you is to talk to your doctors - neurologist, medical oncologist, surgeon, and any others involved with your care. (Oncology/Chemo nurses are great!) Ask questions and keep after them until you get answers. Of course, the problem is, MS tx along with BC tx is rather uncharted territory, as you can see if you read the previous posts. Nobody seems to know what to do with us, post BC tx. But...that is exactly why we need to keep after the docs, asking questions and demanding aswers, hopefully prompting more research into this.

I am at that stage now. My neurologist and I decided to go with Copaxone, since it seemed to be the least problematic, right now. I am seeing a neuroimmunologist in June, for a second opinion. As I've stated in previous posts, I am expecting a very well-educated guess from him, because no one really knows. There needs to be research studies done, to give us, patients and physicians alike, some answers - or at least more information so that we can make better-informed decisions. Okay - I'll get off my soapbox now...

You caught your BC at an early stage, so that is very good. How big is your tumor? That will be a factor in determining lumpectomy vs mastectomy. Also, with BRCA-, you don't have as big a worry for future BC, as our BRCA+ sisters. When my case was sent in for genetic testing (after surgery), I had almost talked myself into having the other girl removed, to avoid future BC. When results came back negative, I decided on no more surgery, unless my life depended on it! I will just have to be vigilant about being monitored by my docs, and knowing what is normal for me - getting it checked out when something 'doesn't seem right'. You mentioned "mastectomy's" - are you considering bilateral mx, for future BC prevention? 

LegalSec, do you have your ER/PR status, yet? That will determine your course of tx, as well as your Her2 status. A Her2 report takes longer to get back, so you will probably not know until after surgery. Deciding what to do about surgery is a tough one. Get all the doc's opinions, and then decide what feels the best to you. You won't make the "wrong" decision, just the best you can for yourself. Whatever type of surgery you decide on, there are plenty of gals here, who are dealing with those outcomes, to help and support you.

At this time, BC trumps MS. You asked if MS will interfere with BC tx...no, it's the other way around. BC tx usually stops the MS meds, although, not for everyone. Most neuros say to treat the BC, and then tackle MS after chemo. I had to go off Tysabri, but was able to stay on all my other MS meds (Neurontin, Provigil, etc.), with my MO's approval. Make sure you have a medication list when you see all your docs. 

Ultimately, getting rid of the beast is most important, so that you can go on living your life in the best health, possible. Yeah, I know... with MS??? 

Good luck with your decisions. We're all here - ready with (((hugs))) and warm wishes. ~ Shar

P.S. I don't think age is much of a factor in all this. I'm 58 yo - you're a young whippersnapper at 40!!! 

Hello LegalSec, 

How are you doing?

Best wishes ~ Shar 

Hi 3jays,

I remember that you had mentioned that your "teeth were crumbling" due to chemo, in a previous post. I understand what you meant, now. Last weekend I bit down on something not hard at all, and heard a "crunch". I saw a small chip and felt a crack. Oh No - my front tooth!!! My dentist was able to fit me into his busy schedule, and said that luckily, only the enamel was affected. Double lucky, he only had to smooth out the rough edges. He agreed that, along with "old teeth", chemo could also have been a culprit. Oh goody...what else???

I hope your Spring is going well, and that your thyroid problems are smoothing out.

Take care - Shar

P.S. I guess we are busy getting on with our lives...this group has been very quiet! 

3jays,

Have you tried the Biotene products? They have helped me tremendously with dry mouth, which is caused by my MS meds. The mouthwash/rinse is very good, as well as the toothpaste. I've started using the mouth spray, also. It's kind of gaggy, but once you get used to it, not bad. I get tired of chewing gum (sugar free) all the time, so gave the spray a try. There are other brands available, but this one has been good for me.

Hope you're having a good holiday weekend ~ Shar 

Hi all,

I saw the neuroimmunologist yesterday, at Oregon Health & Science University, in Portland Oregon - Dr. Edward Kim. He spent an hour and a half with me! That was unreal!!!

OHSU had sent me paperwork to fill out, including a thorough questionaire about my MS history. They wanted to know about all my symptoms in detail and in chronological order; where I had lived and the amount of time; all about family health history; med list along with starting date of each drug/treatment; along with all the usual info we get asked about. Sure can see the difference in a research-oriented medical center.

He also gave me the usual neurological exam, which gave him the same results that my neuro gets. In fact, he was very impressed with my neuro doc's notes, and had heard really good things about her. That was very reassuring for me - I am in good hands medically ( as I had always believed).

Okay...as far as MS treatment after BC treatment... Seems that Copaxone, which I am currently on, seems to be the safest choice for me right now. Data-wise, there doesn't seem to be enough adverse reactions with cancers or infections to not recommend Copaxone in a situation like mine. Of course, the kicker is that there have not been trials run on MS treatment for cancer patients. There was a young PhD student observing that day...I turned to him and said "there you go - we need research on this!"

Dr. Kim said that data is showing that Tysabri, which seems to have the best efficacy of all treatments, is having very good results for MS treatment, barring any complications with PML, which is still statistically low. But...even though they don't believe Tysabri causes cancer, they are questioning it's potential ability to allow cancer to spread. So, not recommended, unless a patient's MS is so aggressive that there are no other alternatives. I'm not there, yet. I was hoping... the monthly IV really spoiled me! 

Gilenya is showing fairly good results, although a newer treatment that hasn't been around very long, and so the data is still being gathered. It is also not recommended, based on some reports of melanoma spread. Nope, not worth the risk for me, although a daily pill would sure be easy!

The interferons would be a second choice. I told him that Rebif was good for 4.5 years and then failed me. He said that according to my history, I could be transitioning into the next MS phase, where relapses/inflammation has stopped or slowed significantly. In that case, he said that an interferon might just work again. Hmmm, I don't know... will have to think on that one.

He also told me that since I was put on treatment right at diagnosis, it could be that the treatments have held me stable, and that without them, I may start having relapses again. There is no way to know for sure.

I asked him about another choice, that some of you ladies have made - taking no treatments, at all. He told me that if I felt that I wasn't having relapses, this could be an option in the future. He warned that I was not that far out from chemo treatment, and that my cells are still recovering. "Give it time...chemo is tough on your body".

Personally, I am not comfortable with doing nothing about MS. I like being relapse-free!!! (Since 2008) I have good docs, both for MS and BC, so I'll stay on Copaxone for a while and be closely monitored for BC, as well as MS progression.

Moral of story...there are no perfect answers. We each must gather as much reliable information as we can, find the best doctors that we can, and trust ourselves to make the best decisions that we can make for our care.  

Oh well...such is life ~ Shar

Hello & Welcome to the group, Judy!

I know the feeling all too well...you are happy to finally get a diagnosis!

I made it through surgery, chemo & rads without any relapses. My neurologist told me that usually chemo protects against MS attacks, and it seems it did for me. I didn't hear anything about rads affecting MS. Of course, stress can set us MSers off, so surgery and radiation possibly could be culprits.

I had a modified radical mastectomy, and didn't have a relapse, but I am having a lot of tightness/pain in my scar/chest wall muscle. I healed beautifully, so that is not the problem. I went through 3 months of physical therapy, so range of motion isn't the problem, either. I suspect that the tightness sets off my "MS hug", which I have around the same area as my surgical site. I have a long MS lesion from T6-T8 that causes the "Hug". I'll have to discuss it with my neuro, along with my BS. Radiation causes inflammation of the chest wall muscle ( after mastectomy), and the inner breast tissues (after lumpectomy), so pain can be a problem. Hopefully, it won't cause you another attack. Rads really are a "walk in the park", compared to surgery & chemo. I hope it is for you, too.

Judy, you made the best decision for you, at the time. Believe me, mastectomy is no picnic, although doable.  

Oh yes, the "I don't know anything about THAT disease" response from your docs. As I said in previous posts, my top-notch MO admits to knowing nothing about MS tx, and my top-notch neuro admits to knowing nothing about BrCa tx. I guess WE need to teach them!!! 

I hope you have/ will read the previous posts. We all are dealing with these "double gifts". Why? Wish we knew - but never will. 

"Mild and  relatively asymptomatic" ? Oh, how I envy you! And, I hope your MS remains that way. 

I've been on Copaxone 3 mos now - started it during my 3rd week of rads. So far, so good. Good luck with your decision making. It IS an awful lot to be thrown at you all at once, but you'll make the best decisions for YOU.

Let us know how it goes.  Take Care~ Shar 

hey ladies, and hi! to judy: ive been dealing with ms for may years now, and i am one of the gals that doesn't take any ms meds.. they'll overload an already full system. drugs affect me differetly, and i gave up on them a long time ago. i am so aware that they're immnuo suppresants, all of them, and i'm long past the mark where i have remissions in the r/rm stages, so just dealing with the symptoms at this point..

  i agree, though, each of us is different, each disease fects us all differently. i agree, we each have to make the best decision we can for ourselves...

 i hope you all are doing well.. sounds like everyone is "holding steady"@stanzie: im so sorry that you're having the pain in your foot.. i have an ongoing problem with my potassium going low, and then have bad foot cramps. have you had your blood levels cked latelY/ just a thought...good to see you all here..3jays

Hello Ladies, I am another special member who has both DCIS and MS, so joining in.  My neuro said no need to make any medication changes due to BC, I am on an interferon and have been for 8 years. 

I don't anticipate radiation causing flares, but I suppose it's certainly possible.  Haven't talked with an oncologist yet.  I intend to pay attention to my nutrition and exercise, but mostly afraid of increased fatigue.  Oh well, it will be temporary.

I don't think a few weeks delaying copaxone is going to be a problem. Copaxone will not stop symptoms, it is intended to help stop progression, and can take several weeks or more to ramp up to it's full effect.  I know how it is to feel like you have to do something now, but you are already doing alot regarding the BC.  Best of luck getting thru the rest of the radiation, I am sure I will be asking you for advice very soon!