Multiple Sclerosis and Breast Cancer

3jaysmom

MSBEAN and all you ladies, im so glad we're here talkin about another Christmas. ya can't keep a good gal down, eh? hope ya'll had a good one!

3jaysmom

just doing my best to keep this thread going. am going for MRI of the brain soon, my headaches are way worse.. am so afraid of CPMS; but you're sharing has given me the faith to just do the damned thing! will letcha know...       hope its' a happy and a HEALTHY one for all of us!     3jays

3jaysmom

wanted to post here, just in case you guys check here, like i do. My MS has raised its' ugly head, and on top of everything else, its' got me down, a bit.. going to have the MRI: have new headaches, and am falling.. alot. using the walker all the time for now.

   I never thought i'd pray it was "just" my MS; but am scared shh*&*^% it may be a metastacise in the brain.. won't get appt. for awhile, so am just pretending MS is alll i've got to worry about. hope all of you are doing well, and thats' why you don't come here!!       3jays

chrissyb

3jays, prayers that it is your MS and nothing else.  You really have to take special care of yourself.  Love you.  Chrissy

Stanzie

3jays - when is your MRI? Thoughts and prayers for you!!!!! I know you are worried and scared! We are here for you! Please let us know as soon as you know!

 

momof3sofar

I too will be praying it is just the MS.  I know how silly that sounds to someone who is not in the middle of both.  Please let us know when you get your results.

 Hugs!

3jaysmom

thanks, guys Chrissy!r u followin me. Emails' waiting..

   my pet scan for rib pain is next thurs. then mri after that. knew you guys would understand!! i'll letcha know... 3jays

chrissyb

Just keeping an eye on you 3jays........making sure you're looking after yourself.

Stanzie

sorry you have to wait so long.... waiting is always hard.

3jaysmom

thanks guys.. the brain MRI is the one that freaks me. i know already i have a "cogenital" small brain tumor, which came up in my yearly mri about 5 yrs before bc dx.. i hope it wasn't opportunist for the bc... just can pray for B(...      3jays

3jaysmom

thanks, chrissy, i don't feel "stalked" i feel loved!!! 3jays

COOLMSBEAN

Happy New Year 2011! Welcome any of you to our small clik.  Why is it that Dr's are so inep to understanding MS and BC? especially when it comes to meds? I won't take hormone therapy, its an immune suppressor and I already take Avonex for that.  Needless to say this after the fact I find out, and right before Christmas I got very sick and am still recovering. Has anyone else had this problem?

sobeserk

since my last post a lot has happened and I have been doing a bit of research.I had a double mastectomy on Nov 3rd 2010 and 10 days later the shock of the op etc I had my worst excacerbation and I blew my right leg out but good news is I am back now in Jan 15 walking with a cane and I went out to very late last night and had a great time. Two weeks previously I had a really bad drug reaction that was itchy and my face blew up to unrecognisable proportions.I had just had my first Tysabri infusion as I had gone off it before the mastectomy and had been on it for 6 infusions.What caused the drug reaction which was horrific itchy and nothing would relieve it.Was it a combination of the Tysabri,the Antibiotics?I ad also been on HRT for two years before my BC DX and that may have caused the BC.Since going off the HRT I have had UTI's ever since the Mastectomy so was the HRT keeping the UTI's at bay or is the Tysabri causing the UTI's now that I am off UTI.I have been really researching CCSVI and have found a Professor from Downstate Uni in New York who has begun doing it and he is very clever and I want to have it.I havn't started any Adjuvant therapies for my BC but see the Oncologist for first time this Tues 18th.I am interested whether radiation in keeping with Zambonis CCSVI theory will affect the vein integrity.(you'll have to know about CCSVI to know what I am talking about.)CCSVI is my hope in all of this.Drugs shorten a MSers life by 10 years.I don't know yet what cancer therapies I will be advised to have and what the level of my cancer reoccurring is.I feel for you all immensely as it really affects all aspects of ourlives even more and all the drugs,therapies we are given take their toll.I am just trying to work out what affects what.Tysabri is very strong,the Steroids are very strong and heavans knows what all this does for our livers.I would advise you all to look at Dr Salavatore Sclafanis UTube explaining CCSVI and I will post my appointment that I have with Larry Norton at Sloane Kettering after Tuesday as he has written 350 papers on why tumours come back and I am interested what he is going to suggest with me.Also Sclafani has written an interventional radiologist and Professor and very clever.I am having great breast reconstuction so that is perfectly possible tho I believe radiation will harden the breast site where it is focused.More shall be revealed as there are more and more of us.Breathe,read The Journey by Brandon bays.Don't eat refined food or sugar or meat,keep to a low fat no dairy except egg white diet and deep water fish but check the oceanic sites for current mercury content.Take Nuvigil for when you have to go out and have a good time occassionally but it does take away your appetite if you take it all the time.It's all scary but 'they' are trying to help us but we also have to help ourselves and help each other.Love to you all.Chrissy

sobeserk

I also agree that Tysabri is an Immune Suppressor and the cancer therapies will be immune supressors.I must say after 6 infusions of the Tysabri I was starting to feel good but it is a very very heavy drug,then I went off it to have the mastectomy then I had a terrible exacerabation 10 days later.Was it the shock of the op and all the pain killers?Now I am really in side affect land with all the antibiotics etc and I am trying to find out what causes what or is it because Ive been on so much because of the Double radical mastectomy.I also have UTI's constantly and was not havi ng them while I was on HRT for two years but that probably gave me BC.Thats why this CCSVI is giving me a lot of hope where the MS is concerned.I also believe Candida is the 21st Century plague that is giving us all this imbalance and our immune systemsare so out of whack.ThreeLac is the most powerful product for Candida on the market.Look at a good Candida diet as I feel that Candida is the basis to all our problems.Candida loves Antibiotics, sugar, refined foods and the modern diet.I have had to change everything and as I introduce sugar back I get an MS symptom.Kombuchu is great for healing Cancer.Tulsi tea  is a great healer.Organic vegetables and fruit for maximum nutrition and another natural energy booster is Max GL which helps our bodies make Gluthione which cannot be taken any other way as the molecule is too big to deliver into our cell.Max GL is the answer and you can read up about. that.Lots to study about nutrition for MS and a simalar diet is best for both cancer and ms luckily.I love cheese no good for us too high in fat which clogs our veins and makes us worse.Diet,meditation,movement.Yes I know a lot of info but it all helps.The fatigue is overwhelming and you wonder how to even get the stuff but at least you can now shop on line.best Chrissy

sobeserk

I say all of this as I have at times been in and out of a wheel chair but got back to a cane,laughing,living and keeping my life and relationship (somehow) together even tho I have now had a double mastectomy so I guess you got to develop a sense of humour and all your other good qualities and we do have many we just get so tired and forget but we can get through and realise this is a journey a why me journey but we can get through it and I believe help each other with humour,information,experiences our strenghts and hopes and be warriors not victims.Love Chrissy

3jaysmom

hey  girla, SOBESERK welcome! and  COOLBEAN: we meet again; its' so good to see activity on this site. i've been here on BCO for a yr or two (time beimng relative now, in my worls CRS)but Stanzie and the other ladies here are usually busy elsewhere..

    My MS is a constant problem with me, as it doesn't seem to be with them. I had a DBMX like you did, too, beserk.. radical, as well. the BEAST was plastered on my chest wall. they say probably i had it a good 10 yrs. 

    My sympotoms started 6-7 ytrs ago; interestingly, candida WAS the first of it. that progressed to deadly bacterial infections. i nearly died from MRSA.. then, multiple strokes. Most, if not all, a symptom of the MS; they believe. then, te dreaded lup.it had invaded the length of my duct, to appear at the nipple. talk about traveling a long journey!

   one lymph node out of 22 was positive, but it was a very aggressive cancer. i opted to do chemo; which isn't really recommended with MS.

I satarted with A?C and it nearly killed me. mult. hosp stays, breathing problems, etc.. its the neulasta shot for infection after AC thats' the culprit. it harvests the white cells, which is deadly w/MS. the therapist i now have wasn't with the hosp i'm at; he said i should've been hosp 2 days with the AC IV; but, thankfully, i lived tru it... barely. it truly WAS the scariest time of my whole life, and we know how scary life can be.. i think i'm on my 15 life; at this point!lolfollowed ac w/ taxotere. they had to titrate it, it took 22 sessions, altogether. i've been NED for almost 2 yrs, now. im not on any MS drug. the side effects WERE worse than the MS was. thats' all changed now. Im going for testing the next 2 wks.. so we'll see what happens.

   they can't tell if its mets of bc ; or MS changing. it could be ms has changed after chemo.. i'm falling alot, and am having blinding headaches. my contractures are really much worse in the last 6 mos.

  Im supposed to take ALS; but can''t tolerate them. had a bonafide nervous breakdown. got off all of them. tried everyone but tamoxifen. won't go near it, with the many strokes i've had. am doimng many natural als' and wish i could say i was eating better.. but WAY better than i used to!!

   I use a walker, most days, around the house, i have grab bars; and use cane. mostly , wheelchair is only for distance, or crowds. that's changed back and forth, for years..

   I'm 600 this yr. and been dx w/MS for over 20 yrs.. so, i'm just glad to be here. don't sleep most nights, take pain meds at 5 am. and then am able to get 5-6 hrs.Im so very sensitive to ANY drugs, many i just can't go near.. do you ladies find that to be true, also?

    hope you can stick around awhile. i'd love to talk to you about MS and BC; noone else seems to find MS a problem w/.managing the bc.. i sure do.. thanks for listening. hope to hear you again, soon..        3jaysmom

chrissyb

(((((((((3jays)))))))

Stanzie

3 jays -Hope Sobeserk and you can figure out somethings that can help you both. What happend with the MRI or did you say and I missed it. I know you are just having such a rough time with all this. So sorry. I hope you get some good news and find something to help quality of life for both of you!

3jaysmom

hey guys: i'm late tonite. thinking... not such a good thing.. kinda the "which would you prefer? a gun, or a knife?? i got SOME of the results from the Mri. it went to my onco; who of course, knows "nothing" about MS. she's doing the happy dance.. i am, too. the tumor in my brain ( ateeny tiny one) has NOT been discovered by any nasty cancer cells; so, i'm dancing with NED for brain cancer.   that siad, the tech made and i quote "extensive notes and comparisons from the last MRI because of the signifigant changes in the progression of MS"... doesn't sound too promisimng, eh..

    so, its' not cancer, and believe me, I AM thrilled.. but is most likely going to be dxed as secondary progressive. or, Primary progressive.. either being WAY bad, from my point of view. I don't know what to say about the whole thing. I signed up for it, really. Not on any meds. cause i was doing good before the BEAST came to visit me. with chemo, i knew it would change things. one was a rosy scenerio; where chem would slow the progression down. well, that theorys' been shot to he!!\   tommorrow, i'll see (again) if i can get the onco to fax the report. then i have to go to Baptist Hospital in Miami; and start the ball rolling again. At least; to get an up to date dx.. discussion of meds. I'm not willing (nor am able ) to take any inteferone drugs.. so, we'll see what they have to say.. my 1st guess is, we'll end up in the same place as usual. My body rejects ( violently) drugs we try for most diseases. its' a miracle i lived thru chemo; and believe you me, i almost died in the hosp. 3xs with Mrsa. and reactions to chemo. only by the expertise of the pharmacist at the breast centre i went to, did i miss the reactions i had with the 1st dense dose tx. He titrated my chem so i could tolerate it, without weaking it so it wouldn't work.. i truly WAS, and AM, a science project..!! one they call everyday to squeeze money out of!!!

   i always say: you can't squeeze blood out of a stone... oh well, welcome to my world.. Cancer isn''t cheap; but neither is all the other "oppurtunistic diseases " i ended up with..

   I'm really scared, of course, imaging all kinds of dire outcomes. then, i think, i've been thru the worst.. but, in my heart, i know i haven't. one of my dear friends died from PPMS: and it weren't pretty. she wasn't willing to take a lot of the drugs hospice offers, either; so intellectually i know it can be easier than she did it.. long story.. Anyway; thats' for another time, and i'm not willing to jump that forward into the future.. you know how hard it is NOT to; in the middle of the night.... but, for now,, its' all good, and NED of cancer in the brain....thanks for the prayers and support. i have a feeling i'll be here more, even, now. night all. Be Well....        3jays

Stanzie

3jays mom- Oh you have been through so much, I'm so sorry. I have debated on whether to post this or not but I'm going to with saying I really don't know much about this treatment but it certainly sounds interesting and makes sense to me which I'll tell you why in a minute. I tried to post the link but for some reason it wouldn't let me. Anyway, the this doctor has developed a new treatment called the liberation treatment in that it gives MS patients back their freedom. I watched the video late last night when I was tired so I can't tell you a lot but basically this Dr. has found that veins in the neck of MS patients are twisted and prevent blood flow to the brain. He uses basically an angioplasty (balloon) approach to open up the veins.

Apparently he has had a lot of success with this. It shows a man whose one leg is very weak but after the treatment is as strong as the other leg, then another man who drags his foot - after the treatment he can walk normally. This is all done outside of the US - however towards the end it shows a man in the US who has terrible fatigue from MS and he talks a Dr. into trying it and he is back to being who he used to be. It sounds like there is a lot of hope with this and they are getting together patients and looking to see how many have twisted veins. They also showed MRI's which were all greatly improved by this procedure. The one man who is awake during the procedure said he all of a sudden felt this opening and a flood of Wow of my gosh I'm awake and alive and I can think again. I was pretty blown away by this. Now I know.... as we all do there is also a lot to be wary of and must certainly proceed with caution but I would think it would certainly be worth asking your Dr. what he/she thinks of this. If you can't find it I'll hand copy the link down for you.

 Hopefully this isn't grasping at straws - if it actually does work it would be an absolutly astounding discovery. I also just don't want you to give up hope. You are obviously an amazing fighter and you have much to much going on to let all this stop you! Prayers, thoughts, love and support going out to you!!!

3jaysmom

hey /stanzie; glad you posted.. my DH has been "watching " about that procedure for awhile; if its the CCsomethin somethin.. my cardio. has cked my veins for twisting repaetedly, and found them straight.. because of my strokes, they thought it was a good possibility. they have done an angio; and scans of the carotoids.. nothing yet; but he's still investigating the possibility..wouldn't be wonderful if we COULD have that experience.. open up the blood flow; ad wow!! life would be as it was!! i know there's some kinds problem, cause i've used other ples. oxygen, and it def. makes me stronger. they wont rx it; because1. you weaken the body by relying on it, and 2. your body builds resistance, so they want to save it for very late stage management. when i'm particulary bad, ill go to my friends 2xs a day, for a couple of days. it def. helps. i'll continue to keep on it.

  there's been so many "cures" debunked over the yrs.. and the "mercury in the teethZ" theory is stillout there. if that ones true, oh well.. couldn't afford to change all my fillings before bc; def. can't now!! i don't allow the crap in my teeth, anymore, and i'm either losing the whole tooth (thank you chemo,, they're snapping off) or, the new fillings are the bonded ones... 

   thanks for the encouragement, don't ever be afraid to try new ideas on me; i'm way open minded.. remember Laatreil? till that was debunked, i was researching that, too. if your afraid what others may think , PM me anytime. love ya , sistah!     3jays

momof3sofar

Hugs going out to you 3jays!  You sure have had a rough time of it lately.  Praying you get some good news again soon.

 I'm going in for a MRI tomorrow afternoon.  I have been off Rebif (and haven't felt better) since my bc dx in Sept.  I am praying that things have stayed stable.  I went off the Rebif because I lost the funding for the copay assistance and now have medical bills from the bc treatments/diagnostic tests.  I will have to have more surgery this spring because the reconstruction failed (DIEP) so I really don't want to start up on another drug for the MS yet.  My NP today said they are starting to offer patients the pill form of meds instead of shots but it has some heafty side effects and the first dose you take they make you take in the office and stay for 6 hours to make sure you can handle it.  UMMM doesn't sound so good to me.  I know staying off all meds is a gamble but I seriously feel like I did just before I was diagnosed (Aug 09) and felt WORSE and had 3 exaserbations while on Rebif for a year (and none since Sept) coincidence???? Who knows.

Anyway, just checking in and wishing everyone a belated happy new year.

Dawn

ducky2020

 Hi I am new to this but just saying things out loud helps me.  I had bc sugery on 1/7 and I will begin radiation on 2/11 or so.  I will begin antihormone thearpy on 1/25.  Hopefully, I have developed an infection in the breast. It is being treated but since surgery my MS has kicked up.  I take Copaxone every day. Problem is I can hardly walk.  It is like I have stumps to walk on.  I know there is not much that can be done but it is frustrating. Also my breast feels like it is full of fluid, it is red and it hurts. Wish the antibiotic would kick in. I I do understand not even the doctors seem to get that I have MS. Having someone to talk to helps with the stress. At least then you know there are others out there withe same problem.

Kaz12

Firstly, Ducky2020, phone your dr ASAP.  I had that after my mastectomy and had a life-threatening infection called cellulitis, was in hospital for a week on antibiotics infused every 6 hrs. I had pus yeuk in my breast area just like you're describing.

Secondly, COOLMSBEAN who told you hormone therapy is an immune supressor?  Here's info about HT from this site:

"Hormonal therapy medicines treat hormone-receptor-positive breast cancers in two ways:

• by lowering the amount of the hormone estrogen in the body
• by blocking the action of estrogen on breast cancer cells "

It says nothing about immune supression.

  I'm ER+/PR+.  After my mastectomy I was given Tamoxifen but stopped it because of the side-effects.  Then I got stage 4 BC.   I'm now on Zoladex (stops ovaries producing estrogen, I no longer get a period yay :-) and the metastatic tumours have shrunk at a phenomenal rate.  God I regret stopping the HT when the BC was still contained

If you were on Avonex, and it's supposed to do the same as hormonal tmt, why did you even get BC to start with?  I don't know for sure but I have heard it's because the immune system is weakened  that cancer can attack (for anyone not just pwms)

 Anyway, pls talk to your oncologist about your decision to not have HT

3jaysmom

ducky, welcome!! Kaz, i never heard it was an immune suppresant, either. in a way; i feel like i'm playing russian roulette.. no HT, cause the side effects were too bad, i ended up suicidal.. am very depressed lately, as it is. am not on any Ms drug, either, tho that may change soon. the Mri showed NED for the cancer; but, the ms has made a prrogression towards the brin stem.. we'll see. with my constitution, and how i react to drugs, it very well be watch and wait.

  I'm having a very difficult time walking, but a lot of it is because im not walking much. i'm in a very weakened state, and i have to find the chuphah to start getting out more, and moving. ya know, you use it or you lose it!!    be well.   3jays

3jaysmom

well, i finally "got" what the tech who did the mri was trying to tell me. i spoke with a dr. today; not the nuero i want to see at Baptist in Miami; but he gave me some information, and told me to get to a center, ASAP.. i've ot been on a drug for MS because i have such bad allergys to them; and i've been fighting the BEAST.. well, maybe because of chemo; maybe because of time, the progression has sped up, and theres' bad, deep demylination in the pons.. right in the middle of the brainstem!! secondary progressive, for sure, and bad, at that.. its' the part of the brain that effects the autnomic parts of the body.. breathing, digestion etc.. it answers so many questions of whats' been going on. we were just looking from a perspective of BC; not MS... i guess it comes down to a gun, or a knife... ave ANY of you gotten an MRI close to this? i remeber SOMEONE telling me they had secondary, and were on meds for a long time now... HELP!! i can honestly say i've been scared out of my wits, now... thanks, 3jays

momof3sofar

Oh my gosh 3jays...HUGE HUGS going out to you right now!!!  I don't know what to say except that it's time to switch gears and move from BC to MS butt kicking!  (not that you can ever leave the BC world) 

I just got bad news on my MRI as well but not nearly as bad.  I have a new leison on my brain.  They want me back on Rebif asap.  I sooo did not want to go back on the shots.  I was finally feeling like myself OFF of them. I also have to find out about funding assistance because with my BC bills there is no way I can afford the 25% copay for that because it is considered a specialty drug.

Not a good day in the world of MSers I guess.

Praying for you!!

Dawn

momof3sofar

Ducky2020, if you are still checking in here I agree you need to check in with your doctor!

I don't see what type of surgery you had or if you had any reconstruction done at the same time.  I had DIEP and one side failed and had to have emergency surgery to remove what was left of my breast.  The fat had liquified and was leaking out of my flap area.  It could be something very serious, if the antibiotics haven't shown any improvement in 48 hours of starting them they are not going to work.  Please see a doctor and let us know how things turn out!

3jaysmom

hey Dawn; thanks for cking in,, i was wondering where all you guys went to..lol

   the neuro i had a consult w/ today said he didn't recommend i take anything that would be an immno suppresant ( i think thats' all of them ) because theres' still the bone mets to look for.. and, that i have a brain tumor; even tho its tiny, he didn't think i should take something that could possibly "open the door" for a reoccurence. Has your neuro said anything about that? all of you seem to have gotten a red light to start on them.. maybe its' cause i failed like 3, already..

   Im gonna get a full eval at Baptist, and revisit that discussion. but, he has a point...

3jaysmom

Dawn, forgot to ask: what about something besides rebif, or have you tried the other drugs, and didn't like them? are there any w/out shots? likes Tsybari? ( although i've heard mixed responses to it)