Topic: Multiple Sclerosis and Breast Cancer

Aug 27, 2013 05:40PM Live2Laugh2Love wrote:

No, I hope next week that I can get some answers. I have one more test to go, and I hope he will tell me what he is thinking, if he does not know yet. My muscle in my back has been spasming, feels like a Charlie horse.

Aug 27, 2013 09:14PM chef127 wrote:

Live2Laugh2Love,

I'm sorry! I do not HOPE for anything. But s/e's of tx is better than MS

Aug 28, 2013 08:10PM Beckers wrote:

You girls are so good! I need to pay you to do a life overhaul for me! I haven't given up my diet A&W root beer yet. I crave bubbles. Ha!

Aug 29, 2013 11:56AM Live2Laugh2Love wrote:

We are strong woman, we have to be to endure cancer,and other illnesses. You don't need to change everything at once. You take baby steps, change one bad habit into a good habit. Then every 4 months do it again. Within a year you will be a new person. My dad has stage 4 cancer, its in his liver. He has a good attitude about it and we have gotten closer since we both have cancer. I truly understand whats he's going through. He is doing really good right now, he gets a shot every month and it has put it in remission.  

Some of life's best lessons are learned at the worst times.

Sep 11, 2013 09:10AM - edited Sep 11, 2013 09:46AM by NewHopeAndrea

Strength and hope to you!   I am taking everything "one day at a time" as much as I can, except necessary planning and adult responsibilities of course.  Not my nature exactly, but something MS has ground into my thick head over the past 12 years. 

It took 6 months to make my MS diagnosis and my spinal tap was negative.  Don't know how much has changed in past 12 years but my impression is that it still is a diagnosis that is hard to make and requires many other possible causes of the symptoms to be excluded.   Maybe in some cases the spinal fluid or MRI are very clear.  I know my first MRI said lesions were "consistent with MS" but doctor did not conclude I had it until after 6 months of lots of different tests.  If you do get spinal tap, I suggest you ask them to "patch" the site to prevent leakage - which is apparently possible but in my case was not offered until 5 days into a spinal headache.  The ways of the medical world are often mysterious to me. 

There is some evidence that immunosuppressive drugs may increase cancer risk or be a problem if you are a cancer patient.  My neuro, who I believe is quite knowledgable, has taken me off Copaxone while having BC treatment. This is another soure of anxiety (will the MS get worse? Did the treatment cause my BC or would it impair my chances of remission from BC?) but I don't think conclusive answers are out there yet. 

Here is a a quote and link from an abstract of one study from 1338 MS patients: 

"Our findings indicate that cancer incidence is significantly lower in female MS patients than in the general population. Female MS patients treated with glatiramer acetate showed an elevated rate of breast cancer and all MS patients treated with beta-interferons showed an elevated risk of non-breast cancers though not statistically significant (p = 0.122 and 0.072, respectively). Further study is needed to assess possible associations between long-term exposure to the novel immunomodulatory treatments in MS and rate of cancer.

http://www.ncbi.nlm.nih.gov/pubmed/15754125

Sep 16, 2013 01:03PM chef127 wrote:

Live2Laugh2Love,

It's a never ending line-up for drs. I have 3 drs I see regularly and I want to try a tx for my MS, LDN but non of them is willing so I need to add a forth. How can a professional in the med community not be informed on all available tx's?

Fibromialgia, I don't know too much about it but I know there is a lot of pain with it and much available tx's. I think I mentioned that my MS is virtually PAIN FREE, but many MS'ers are in constant pain. Mine is all sensory.

I hope you get to the bottom of your pain and can begin a comprehensive tx.

xox...........Maureen

Oct 21, 2013 06:34AM cdicapua wrote:

My dx for ms was like yours it took 18 mos from the first MRI. They didn't do a spinal tap my neurologist said if I wasn't in a bout, it would show negative. My Ms is strange suttle changes, If the dr wasn't looking for back dx , she never would have seen the lesions. I wouldn't have thought my slight physical issues would mean anything more than a bad back. I am on Anonex Interferon beta 1a. I had BC first but I may have had ms for yrs prior to dx as both my neurologists and psychiatrist said I have had ms for a long time.I am emotionally ok in shock, shock will protect me until I am ready to really face dx of MS.

Nov 14, 2013 06:31AM chef127 wrote:

Hello Ladies,

Hope your all doing well. I did finally find a dr who rx's LDN, Low dose Naltrexone to treat MS. I wanted something that can help with the symptoms. I've been taking copaxone for a year and all my symptoms have progressed a bit, there is nothing to help me feel better so I'm putting my faith in the LDN which after only 3 weeks of the full dose(4.5mg) has helped with my bladder issues and some fatigue. It can take 4 months-1 year to to reach the full effects of the LDN so I am hopeful. It's non toxic and very inexpensive. It stops the progression??and is also used by many cancer patients b/c it slows the proliferation of ca cells and many other autoimmune disorders. It is a no brainer for me. It is an immune booster so its not compatible with the interferon drugs and most of the oral meds for MS b/c they suppress the immune sys, which is counter productive for cancer, but copaxone is OK. I may give up the Copax??

Research the LDN as a real tx for MS, cancer, fibro, etc. IMHO, it is an amazing drug.

Maureen xox

Nov 26, 2013 05:06AM chef127 wrote:

hello Beckers,

Hope your doing well. I did go to a seminar about Tec. and I spoke to several people who are taking it and they seemed 'hopeful'.

The side effects are flushing and digestive issues and some are getting some relief from fatigue. One of the ingredients in it is a furniture preservativeThat turned me off to Tec. It is fairly new so the long term s/e are unknown yet. It is an immuno suppressant. I personally feel the drug companies are willing to throw anything at us while we are scared and desperate! The cost is 5,000$ a month. The Tec is not for me.

Teva Pharm is working on a Once a month, slo-release Copaxone, It will be a year or 2. I'm ready to give up the Copaxone and stick to the LDN......IDK I'm scared and desperate! and a bit of a conspiracy theorist.

Stay safe and mobile xoxMaureen

Feb 1, 2016 10:14PM Tess53 wrote:

To the Lady with the sister with MS and DCIS..

She has my sympathy.. I was diagnosed after a 30+ trip thru nothing showing up enough so they said MS !! Finally I had a diagnosis that it wasn't all in my head..I'd been labeled me a chronic hypochondiac. Needless to say that DR was never mine again.. Then I started on the last 12 yr odesy of trying to afford Meds, get proper testing, finally showing YES there is Cognative damage it isn't that I am Lazy... I thought I can Deal with MS I can deal withhe attitudes, the little social worker after me telling the Neurologist that the last two meds something isn't working right,, nonsence I prescribed it you are just going to have to get used to it.. well when I was almost Blind in on eye I stopped taking one drug and stared getting my sight back, she pitched a hissy fit that I wasn't taking Meds as she thought I should .. Now, even the TV COMMERCIALS say LRICA can cause Vision Problems I could tell you that in 2004...

Then 2015 decided I needed a little strirring of the pot I was actually learning to manage some things without assistance.. and threw in a curve ball..I had a screening Mammogram about Halloween.. then they wouldn't read it waiting on my last one for comparison.. well 1st week of December they finally called.. I was in Florida attempting to talk My 82 yr old Dad thru his new diagnosis of Diabetic and new Pacemaker they had implanted.. No letter which I would have expected no they called my cell.. WE need you to comeback we need to repeat the mammogram..Lady I am in Florida 5 states away.. OH when is your vacation ending we'll set it up for when you get back.. Uhh NO I am 5 states away I'll deal with it when I get home.I am not on a Vacation, I haven't been on a Vacation since GRADE SCHOOL.. Penny-less people don't take vacations and MS is not a Cheap problem to have... Well we can set you up to have the mammogram done there.. NO YOU CAN'T I am not paying Out of Network fees like that!!

So I get Back Jan 5th I have a filling done because part of a tooth broke, and Jan 6th I had the SECOND mammogram..only one breast and in a circle to catch the one spot they wanted to see.. then oh need a ultra sound.. Need a Biopsy... WAIT WHAT Someone need to talk to me instead of chirping off orders that send techs scrambling.. This is very suspicious in Fact I'd almost bet it's cancer. Well then why don't we have it removed whole instead of opening it up.. No Biopsy is needed.. After 20 minutes I said FINE do it and let me off this Concrete slab I am laying..{felt like} office clerk: 2 days later another call I am calling to schedule your mastectomy... Well I guess that's your way of saying the biopsy showed something Oh they didn't call you I am sorry but yea it's not good.. so Surgeon consult.. he comes in and literally pats both breasts as if is expecting to find something the size of a walnut..it is 0.6 cm idiot you aren't going to feel it especially patting it like a toddlers head.. Well we'll just run a wire in there to guide it cut that spot out and you can head home and never think about cancer again... REALLY...What Cracker Jack Box did you get your degree out of?? No lymph-nodes they want to do over 2 weeks of radiation an intubated surgery and I am Like OH HECK NO.. No intubation I spent too many years as a HOME VENT NURSE taking care of people that go in for just a quick little thing.. that I am Surgeon HEAR ME ROAR.. screws up on and the person is on a vent for the rest of their life..

Then there is this little issue why I had the Physical back in October to begin with.. I have had major increase on some MS symptoms and some weird ones I haven't had with the MS..NO one has bothered to look at anything OH WE FOUND THIS MICROSCOPIC SPOT and you'll be right as rain in no time.. I see.. that explains the more then 35 pound weight loss, the hair coming out so instead of the Full head of Long hard I had it's now starting to get thin enough to see scalp if you look at it wrong.. why I am suddenly having coughing and almost chocking spells drinking water or saliva.. The surgeon made sure to note my high BP, my High Cholesterol that meds haven't dropped it in the slightest in 2 yrs..the touch of arthritis, and yea sometimes in the winter I get a little wheezy and while they say asthma it's treated by OTC meds.. but YOUR I am Fully sure you Billed me a Complete PRE SURGICAL EXAM.. wow this Dr is good.. he knows what my neck feels like as in no glands swollen or thyroid enlargement.. he could do that without touching my neck !! he's good..NOT MY abdomen is neither ridged nor do I flinch in pain.. he could tell all that thru my blue jeans AND MY LAST GASP AT SOMETHING TO KEEP ME FROM WALKING OUT OF THEM BUTTONED AND ZIPPED.. A bungee cord belt..

SO IF YOU HAVE MS and get a DCIS DIAGNOSIS, I Pray you are not anywhere near Lexington KY.. you'd think with as many Hospitals and a State So REAL PROUD OF ALL IT'S Med Schools.. we'd have good Care.. NOPE.. I'm going to talk to the VETERINARIAN that removed a small mass in our cat last year.. Needless to say, I am going to keep my micro spot, my DCIS and monitor it evey year and wait for it to show it's the cause..or that it's changed.. I am going to look for other issues..back to the hunt for what's really going on.. then I'll think about micro spot..

Feb 2, 2016 04:35AM Moderators wrote:

Hi Tess53! Welcome to Breastcancer.org and thank you for sharing your story here with everybody! Pleas let us know if you need any help from us.

Sending big hugs your way!

The Mods

Feb 6, 2016 09:35AM chef127 wrote:

Hey Tess,

Sorry your dealing with "cracker jack" docs. I suggest you find a BC specialist and facility. A 0.6cm DCIS is not so micro, still small but a watch and wait approach is your choice (a good one) but I'm pretty sure the advised scanning is every 6 months??? It MAY never grow and cause any issues but it is 'pre' cancer. Please invest in several bungee cords(your too funny). I should start wearing mine.

My surgeons wanted to lop off my breast, 2 BS's, but I did find a BS willing to try a LX, and it was a success. I researched a lot and felt comfortable making my own decisions, not letting the drs dictate my future. If I am wrong I have only myself to blame. I'm ok with that.

I've had MS for about 35 or more years. Dx'ed in 2001 and it was benign (lack of adverse events) so I did take copaxone daily for a short time, side effect free. I had my first real event 2009 which kicked my ass and left me unable to work. ALL the other DMD scare me as much as the MS. I currently on LDN and alpha lipoic acid. My neuro recently told me about a study on a Biotin study for MS, to see if it helps to regenerate the myelin covering the nerves. 300mg. daily. that's a lot. Gave me a headache so I cut back to 100mg daily. Who knows, but it is non toxic?

Techfidera does cause hair loss. I spoke to several people on it and they had the hair loss but they said it is growing back so maybe it takes time. It also puts you at risk for a brain infection called PML. They found several cases since it came to market. Not for me. It also compromise your immune system(white blood cells) Not good if your fighting cancer. I don't trust any of the DMD's x copaxone but that's just me. I have transitioned to SPMS, a slow decline in disabilty without relapses. MS really sucks BC pales in comparison.

I hope you can get a clearer picture of your DCIS and move on. You can PM me or ask any ?????'s.

Beckers, Good to see you. Sounds like your doing well. Hope the copaxone keeps the SPMS away! but if you live long enough it is inevitable(mostly) Such a happy thought.

xoxMaureen

Aug 1, 2016 03:32AM - edited Aug 1, 2016 08:53AM by donnadd

So is this where the MS + BC people hang out? I posted on the "Breast Cancer with Another Diagnosis" forum which made sense since not every BC+MS lady is in this DCIS forum (I'm not - for my BC I'm active in the "Triple Negative Stage IV" forum) - MS crosses the borders to all BCs . But I realize that this group is rooted here so I'm moving my post here and leaving a link there in case any other MSer gets lost there. So here's my post moved here:

So catching up here - I have MS since 1986 (I was 24 yo). I'm not going into all my MS symptoms here (this is a BC forum), just what applies.

I was treated with copaxone 1997-2010 (I'm not positive about years without looking it up). I had some flares over those years but mostly the problems were that I just slowed down. In 2010 I switched to Tysabri which I feel is a superior drug. No flares at all.

2015 - That's when the BC appeared. It seemed mild and was treated with a lumpectomy, CMF chemo and radiation. Tysabri was halted for chemo treatments. The oncologist chose CMF which I think was a milder treatment because of my MS. My MS is pretty stable (maybe cause of the Tysabri) but the cancer and chemo didn't seem to affect my MS (I'm always tired anyway...)

May 2016 - My cancer returned!! It metastasized!! Maybe it happened cause they gave me a lower chemo dose cause of the MS (?). So I'm off of Tysabri again (they give 3 treatments of steroids - over 3 month to let your body go down from the Tysabri easily). When I went for my MS steroids after my first chemo the MS nurse asked me how I was - I said - Here I'm great!! - Nothing like cancer to put things in perspective .

====================================

I do think that the MS caused or affected the BC. I don't know if I can point to a specific drug but my MS lifestyle really is involved. Some of the ways:

1- I'm not very active. I can only walk about 300 yards and not quickly so it's not exactly exercise. I can ride an exercise bike for about 20 minutes, but I really have to save my strength to do things like make supper so I don't do it often enough.

2- I don't have the energy to cook all those healthy things.

3- I never drink enough cause I'm afraid of not having a bathroom available.

4- I haven't worked in years and disability doesn't cover the costs of those health juices and things.

5 - Have you reached the MS-constipation stage? I'm sure I'm poisoning my body with constipation.

=====================================================

After 30 years I'm OK with my MS (I have 5 kids - aged 15-27). I'm 54 yo and I sort of live the life of an 85 yo. I don't drive. I can't walk to the store myself. Going out must be planned. But I'm content with my MS-life. The slowdown has built up over 30 years so I don't expect to suddenly run a marathon. But I'm not sure if I have the energy to fight my BC.

Sep 27, 2018 10:22PM jocelynroxx wrote:

Hi wackyjackie-

I have been dealing with MS for about 5 years now, mostly by eating a strictly clean diet and exercising every day. I take copaxone 3x/week and supplement with a handful of nutrients. Much to my surprise, I was just diagnosed with DCIS this month and am in the process of scheduling surgery. It's a lot to take in right now, but I can update you as I go. I'm 45 and have taken care of my health all my life - no vices, no risks, no family history of either disease.

My core group of friends, family, and faith have given me unshakable peace about it all. God's gotta handle this one.

Best withes to your sister - she is not alone. ~Jocelyn

Mar 10, 2019 08:48PM - edited Mar 10, 2019 08:50PM by beep7bop

I saw this and just thought I'd tell you I have MS, but I am waiting for biopsy results. will have them on Tuesday march 12 that when I see breast cancer doctor. dx MS 1999