Multiple Sclerosis and Breast Cancer

3jaysmom

Dawn, i'm sure your asleep, but i want you to know i'm lighting a candle for you tonight, to stay lit tomoro, till we know you'll be out.  this will be wonderful. all the anx of waiting will be over; and once you're over the hump of surgeries, you can get on with it..i know itsa long procedure, when you add recon on with bmx, my friend was alonggg...time. so, take it very easy after, and we'll see you on the rebound .. light and love,  3jaysmom

3jaysmom

3jaysmom

C:\Users\Five\Pictures\finley 2010\digital camera pictures 1223.JPG

3jaysmom

trying again

chrissyb

3jays, I've followed you here to see if we can work out whats happening.  Are the pics you are trying to post yourown or ones you find on photobucket?

sobeserk

Hi I just read this multiple sclerosis breast cancer diagnoses.I have MS diagnosed in 2006 and on November 4th and a double mastectomy for my breast cancer.Even tho I have had a double mastectomy,sentinal lymph nodes removed my pathology says I am still showinf some signs of cancer,At the moment my options are now 6 months of chemo and radiation.I am on Tysabri which is also a strong drug.I am looking into CCSVI.I am not a happy camper as radiation and chemo will not great for someone with MS.I don't know what to do myself I am pretty depressed.C

3jaysmom

sobeserk: hi, im the 3jays that stole this site last night to figure out pic  s

3jaysmom

bbeserk: well, that didnt work out the wY planned.. it was suppossed to be a heart, saying welcome.. another time.. but yes, welcome.

     i can't really address your situation, everyone is different. but, i can tell you my story. have had dx. of MS for 20 yrs or so. am not taking any drug.. they didnt exist then, and before b.c. my life was pretty good. more better days than not. went fro wheelchair, to walker, to cane for distances and balance. it WAS relapse Remitting.

     then, came along BC and everything changed. i had a double  modified radical MX in April 2008; followed by a really long time in chemo.

        because of MS, the 1st dose dense chemo i hadf, i reacted poorly to. so, new onco titrated it very slowly. 1st: ac/ cytoxin.. that was the triciest part, because after each dose 4 in total, they give you a shot of neulasta: it HARVESTS w blood cells..to fight infection. you absolutely have to have the shot, if you take that chemo/ mix.

     for me, i took the chance, and it was the worst part of chemo experience.. the point is, two yrs later, im "talking" to you, so i survived it. id suggest if you do have to do it, try to do it when your onco will be open 24 hrs later. i bacame terribly dehdrated, had to wait wkend and then go in to get hydrated. it was scary, but alls well that ends well..

      next, again, taking a very watered down solution, i took taxotere for MANY sessions..

       its' the more toxic of the drugs; but with MS was the easiest for me to handle.

       so, here i am 2yrs away from surgery, and 1 yr 9mos away fro chemo, and i'm cancer free. have 3 pet scans to show NED "No evidence Detected"  the best news you'll EVER get from now on..

      which is to say, my MS was affected, its gotten much worse than where i started. remember; i wasn'ton any meds. there are other ladies here, that were able to take their meds during, and they have fared better than i.

                i want you just to know, for a certainty, that there are many of us here who have been in your shoes, and are Living to talk about it.. as for me, with time, i may get back into a state closer to remission, and in the meantime, i continue to have a life that's more than worth willing...

        go to the other posts, and put the cursor over the names. click on it,and you will get to their homepage. on the right will be "send a member a private message" leave them a message, they'll get back to you. and, you can always PM private message me in the same way, anytime.

          at this site, BCO, we have quite a few of us who have MS, and are living to tell about it.. its' not too bizarre, and we all can band together, and help each other... again, welcome. take a deep breath, and get going..introduce yourself to your new support group; who have truly "been there" hugs, 3jaysmom

fuzzycat

Hi. I also have ms and was dx with breast cancer and will soon be starting chemo and radiation. I was wondering how it went for you.

Suzanne

fuzzycat

Hi. I also have ms and was recently dx with breast cancer. I will have to do chemo and radiation. Can you tell me how it went for you?

Suzanne (fuzzycat)

3jaysmom

hmm

3jaysmom

hi fuzzycat, i had a double masectomy. stage iiB..did many chemo's it had to be titrated for me, i couldnt handle the dense dose. tried once, was too sick. stretched it out after that. i had AC?Cytoxin together, for 5 doses, then many taxoteres... the hardest is the AC ?cytox.. you have to take a neulasta shot that harvests your white cells for that chemo. discuss it with your onco. i got really dehydrated, and it was a little rough. im not on any MS drugs. they're are others here who took their drugs right along, and they had no problems. PM me anytime. im glad to see something happening here. MS is such a large part of the journey for me, i guess not so much for other ladies. im praying you cruisee.       3jays

momof3sofar

Oh goodness I never did see this till now!

Thanks you so much for the good wishes and lit candle.

I came through the surgery well enough, spent 4 hours in recovery but ended up back in surgery 8 hours later because the muscle cuff they took on the right side free tram was oozing blood.  Well needless to say that caused me to loose too much blood an I ended up severly anemic and came very close to a blood transfusion.

My biggest complaint in the hospital was the lack of MS knowledge of what was causing my pain.  It took about 3 days before someone finally came in and said, that morphine is not going to help you, you need a muscle relaxer....I wanted to jump out of my bed and kiss her.  From that moment on they used valluim and my baclofen alternating so that I could finally move and silly them I never touched the morphine again.  UGH.  I ended up staying at the hospital from Wed to the followingt Tuesday and was never so happy to be home as I was that day they finally released me.  That day was my lowest hemoglobin though (7.0). 

I am coming along slowly at home, slower than I'd like though.  I think that some of my fatigue is just normal MS related and some of it is normal post surgical related but it's hard to tell the difference at this point.  I am having some issues with one of my flaps from my DIEP side but I see the Plastic surgeon tomorrow so hopefully she will have some solutions.  (something that doesn't involve surgery again is my prayer!)

Thanks again so much!  I had so many people praying for me (all around the world) and just stopping by to see me or send cards, I was shocked at how many people cared! I know that sounds strange but it's true!

3jaysmom

glad you're on your way to all better..as far as WE get, anyway.. make sure PS gets the MS; watch carefully for infection. i got MRSA after las surgery, really both.. the surgeons didnt get how easily we get infected. be pro active.. i also, have to make sure i take the flexeril/ baclofen scheduale..my legs are worse since chemo.. glad your'e recoverinng, sweetie..

3jaysmom

sorry, it was gonna be a nice one.. just couldnt resist!

3jaysmom

thats more what i shoulda done...3jays

Stanzie

3jaysmom - how very sweet! I love what you said.....

Stanzie

For me I was diagnosed with MS in 2002 but they think I have had it since 1971-1972. I take Copoxone and was able to keep taking it. I have my BMX last March but I did not have to do chemo or rads so I know those drugs are hard on MS patients. I hadn't heard about the Morphine but that makes sense to me. Something to be aware of. And Yes I'm constantly surprised by doctors who don't want to touch MS patients without talking to the neurologist - seems odd.

flash

Yipeee for the new research in England joint with US that found a key way to treat the damage to the neural sheath.  They're saying it's only 15 years and there may be a significant curative tx for ms.  Wheeeeeeeeeeeeeeeeeeeeeeeeee!

3jaysmom

hadn't heard that; thats' great.. probably too late for me, but i worry so much about wether my son will get it from my DNA.how great to know it might be around the corner!! now, what about BC eh?...one thing at a time, i guess..    3jays                                                                          its' so good to see this thread become active, again. for me, my MS shados my every days.. for a lot of you; not so much .. chemo interfered with the MS; but i don't regret doing it. i hope i have YEARS to spend with my GKids, even if i'm in the chair, im still alive; more imp..livING...  love ya all!! Happy Holidays, Ladies, enjoy them...      3jays

Kaz12

ok so I'm the one with stage 4 breast cancer, told 11 mths ago, and SPMS, diagnosed 16 yrs ago.  The past 11mths have been a whirlwind, I can't belive it's almost Xmas again.  After I got told the BC was terminal my fiance and I got married which was so nice and a story in itself!  I sold my business so am now retired, oh I'm 40 y/o btw. 

I've been on Zoladex and Aredia since with ex. results but having a 2 mth break cos they've hit my body hard: bad bladder spasms that oxybutinin doesn't help(getting Botox in bladder next week to hopefully stop this), awful awful hot flushes, swollen feet & ankles, muscle weakness, sore bones etc the list goes on.

My life/body was shit from the meds so onc said I need to look at quality of life not just living, esp as I have another potentially fatal disease.  Now that was interesting as that's the first time I've heard that and I thought med people aren't really meant to say that about MS.  Although I knew 2 men in their 40's who died from MS complications recently in my hometown.  Yet we can't use the hospice for timeout, though I can now, ha!   

So hopefully I'll start feeling a little better on my drug break, though am a little scared not having any cancer drugs.  Am trying to arrange a bucket list item of a hoon around a race-track!

3jaysmom

KAS, im so sorry for the hedouble l that you've been going thru. im in denial (at least till 2011) with my MS its' def gottne worse since chemo, so am expecting SPMS myself. but, you have so mauch to face.. keep coming back here, telling us at least we've been thru somw of it.. hope you don't mind me asking.. whats' a "hoon around a race track?"           3jaysmom

3jaysmom

KAS, i just wanted you to know your info helped me. im now researchin SPMS.. i thought you don't last with it. so, ive stuck my head in the sand. been putting off an eval; for fear to hear its' worse, relapse remitting, since chemo. now, since your here, and talking about it. im goona make the appt. for reval. thanks. we never know when we post how our info can help each other...       3jaysmom

Stanzie

Kaz- Wow, so much to go through. I love that you got married - what a lovely man you have found. Keep on fighting all this you never know what will happen. I'm so sorry all the meds have been so hard on your body. Seems like there could be something that works for people with Ms that wouldn't make it worse as well.

 3Jaysmom - I agree - I have found so many things that help me just on something someone has said. Sending good healing thoughts to both of you!

NewYorkMSBC

I was diagnosed with RR MS in 2006 and used Copaxone daily up untill this year and was on Tysabri until in September was diagnosed with Invasive DC.On November 3 I had bilateral Mastectomy and expanders and the saline.Stayed in hospital 4 days, a week later had my worst excac which blew out my left leg.Spent a week in hospital on Steroids, came home with terrible UTI which I have not been able to get rid of.My leg is coming back and I can walk with cane again but where I was %85 I only have %70 if that.I have only had one node removed on good side but left side they could not find sentinal node which is confusing.Some Cancer still showed up on pathology,but was removed as it was in some extra skin left by Plastic S.I spent a week at Gawler foundation in Australia(I am an Ozzie) to be programmed an MS diet but didn't realise I was also preempting a cancer diet.I had Pet scan today but so far every machine from MRI,UtraSound,mammogram didnot show my tumour to be cancerous until I asked for them to biopsy my flat tumour under the nipple.After the major exacerbation where I felt I was on a merrygoround going 300 miles an hour I don't know if I can tolerate anything..Add on the UTI,constant appointments,I really am starting to feel like not doing anything I am quite depressed and on Wellbutrin.Can't seem to get into the Christmas Spirit.I have become dependant and dispondent.

NewYorkMSBC

I was researching CCSVI the Zamboni op and was getting really close to having it then the BC.I am on Vitamnin D 5000,Antidepressant,antibiotics for UTI.My husband is being very loving and helpful but I just hate putting him through BC after having put him thru MS.I am 56 and probably have had MS for 20 years but also in denial.I could never imagine getting MS let alone BC as well.At first I felt strong and I was facing it but slowly the ops,the hosp,the exacerbation,the UTI's,the constant appointments.....well I am complaining but it is rather a double whammy and you must wonder was it the HRT,was it the lack of VIT D,diet definately has contributed to my health and I feel better when I stick to the Gawler diet.It's also the constant having to accept your physical handicaps that change,your body,the constant changing and acceptance of a new you,every so many months.Being cheery so people want to see you and not avoid you.There is so much reading and wondering on a Mind Body Spirit level how to stay balanced and moving forward.I am so happy to find this site and that I am not alone.

3jaysmom

welcome New York..i'll be back inawhile. having computer problems. we'll talk soon... 3jaysmom

3jaysmom

3jaysmom

happy holidays, ladies, from me and my little friend... 3jays

COOLMSBEAN

MERRY CHRISTMAS AND HAPPY NEW YEAR.  I WAS ABLE TO WATCH MY 20 YR OLD SON HAND OUT PRESENTS TO HIS 3YR OLD BROTHER AND 1YR OLD SISTER. GLAD I WENT THROUGH ALL THE CRAP, BECAUSE THIS CHRISTMAS WAS WELL WORTH IT!  LOVE AND BLESSING TO ALL, HANG IN THERE!