Multiple Sclerosis and Breast Cancer
Comments
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Stanzie
Thank you for your reply. I remember reading that of the patients with relapsing/remitting MS, approx 50% develop secondary progressive after 15 years.
I have been on Avonex and then Copaxone. Copaxone gave me welts approx 4" in diameter and actually left dents where the adipose tissue atrophied. That's the only reason why I wouldn't use it. Good news for you is in 2013, it is being reformulated for every other day. Rebiff is like Avonex only it is 3 times a week vs. 1 and they slowly increase amnt over time so the SE's are not as bad. He said some people tolerate it better. -
I have a friend who is one either Avonex or Betaseron and well will have to find out which but she has done fine on it.
Wow, didn't know about the 15 year thing..
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Does she have BC too Stanzie? That's what scares me. I don't know if I want to take something that could decrease my immune system and have the BC come back. I appreciate whatever info you bring my way. Thank you!
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Oh Beckers, you are only 5 weeks out! Give yourself a break...heck, give yourself a great big Woo-Hoo! for getting out and walking those 10 houses!!! I'm insanely jealous!
I sometimes hate reading the posts on other BCO threads, where gals are back to running, doing marathons, being very active. Then I tell myself, "hey, that's why you're on the BC & MS thread!" We live in another world, with different rules. Don't beat yourself up, celebrate whatever you can do. It will get better with time.
Did your new neuro give you his reason for prescribing Rebif for you? I was also put on Rebif when first diagnosed. My neuro felt it had the best data, at the time. I was on it for 4.5 years - then it stopped working for me - my MRI showed an increase in lesions. I had no problems on it, besides the red polka dots all over! Some people get the "flu" feeling afterwards for a day or so. You do need to get bloodwork done, to check on liver function, mainly. My numbers were rising steadily, but never hit a critical number. When I went off of Rebif, and onto Tysabri, my numbers dropped dramatically, and I felt "brighter". My doc thought that that was a result of getting off the interferon. Because of other reasons, I was off of treatment for 4 mos before getting on Tysabri, and had a relapse - tells me that the Rebif had done it's job!
When I saw the neuroimmunologist at OHSU, in Portland, OR, where they have a very well-respected MS clinic and run many trials, he told me that, with my BC dx, I should stir clear of Tysabri and Gilenya, because the researchers had a real concern with these MS txs not causing cancer, but possibly allowing it to spread. His first recommendation was Copaxone, considered the safest, and then the interferons (Rebif, Avonex and Betaseron). I am currently on Copaxone, and doing fine.
It's a hard decision. You certainly don't want the BC to return, but then again, you sure don't want to allow MS to throw you into disability. I would press your doc for more info, and get a second opinion, if possible, if you still have doubts. This is not a very well researched area, so it is very difficult to get information, let alone medical opinions. If you go back through the posts, you will see this same question coming up again and again..."now what?" Good luck with making your decisions, and let us know what you decide.
Been there, done that ~ Shar
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Hello Donna,
77 is still young and kickin'!!! Please don't base your treatment decisions on age!
What type of BC does your Mom have? The type, stage, grade, etc will determine the course of action for her. Was chemo recommended? If not, that is great! Chemo is definitely much harder than radiation. I had both...radiation is a walk in the park, by comparison. I don't see where rads would affect MS, but everybody is different. Especially with your Mom's MS being in remission, I would think she would be fine. Of course, she needs to talk to her Radiation Oncologist, and get all the information that she can. Also a Medical Oncologist, if chemo was suggested. Please get all the info you can before making your decisions. Don't let hearsay or fear dissuade you from looking into tx options.
And please don't rely just on a 6 month mammogram to monitor for recurrence. You need to have a BC doc monitoring with physical exams, along with mammograms. Some docs like to do various lab tests and scans, while others don't. Find someone you can trust - confidence in your docs can make this whole BC journey so much easier.
Your Mom travels 35 steps just to get into her home??? Wow - she's an athlete, to me! Way to go, Mom!!! If she does have radiation, keep in mind that fatigue can be a side effect. If she has MS fatigue, adding rads fatigue may make it harder for her to climb all those stairs, during tx. It does get better with time, so you may only need a temporary solution.
Good luck with making these tough decisions. Let us know how your Mom is doing - we are all rooting for her!
Take care ~ Shar
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Shar - He chose Rebiff due to less SE's than Avonex, which I've been and not eager to go back to. I've also been on Copaxone and it was so hard on my tissues. I would get huge welts after injecting and now have permanent dents. I don't like to wear sleeveless because my arms are dented where it atrophied the adipose tissue. Great if I can figure out how to sculpt my body.....I may end up skinny after all!
)
I will talk to my onc next week and my guess is he won't be sure how to advise me. Thank God you saw that specialist and can share some great info with us. My son just moved to Portland area. Wish I was there... -
Beckers, I know!!! I'm losing weight one piece at a time!
I don't inject my arms - feel like I have enough going on 'upstairs' right now. Trying to rotate sites is a real nuisance, but so far I'm doing okay. My welts only last a few days, but I bruise a lot easier on Copax than I did on Rebif. I wonder if that is a SE of chemo, instead of Copax? Anytime I bump or hit something, because I am so clumsy now, it seems to hurt more, since chemo. Hopefully this will pass before long. I am about 7.5 mos past chemo.
I saw Dr. Edward Kim at OHSU. If you ever get to visit your son in the Portland area, he's a great doc to talk to - very, very knowledgeable, but very personable. And Portland is beautiful and green, unlike here on the eastern side of OR, where it is hot, dry and brown. They drive crazy there, but you are from So Cal, so that point is moot!!!
I had UMX with no recon, and my physical activity is pretty low. Of course, thanks to MS, my balance is shot, so wobbling around all day is my (non-preferred) mode of activity! So, you girl, are my hero!!!
~Shar (aka Grandma Wobbles!)
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I do my shots in my stomach and I get bruises and sometimes big areas of skin that just look grey- good thing I never had even thought about two piece bathing suits - Ha! When I was married he used to do the shots in my back hips but I can't do that by myself. Gave up on my arms and legs a long time ago...
Balance! Oh My!!! You know I think that is the one symptom people don't mention that often but oh my gosh... I feel like I live on a tilt a wheel. Even if I'm standing perfectly still I can fall on someone... I know strangers must think I'm drunk or something as I just stand like the leaning tower of Pisa.... I have been working with a trainer and when I can really go to her, it helps a great deal. But then getting the energy to go and work well of course that is another deal all together.....
I went out with my friend who has MS(no she doesn't have BC) but it is her right side and my left side so we figure we can walk together so if we start to fall we will lean into each other's good side... Yes we did make a goofy look pair.....
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Smart move, Stanzie...having a friend who leans the opposite of you!!!
I, too, am finding that I just can't stand still - have to lean against something all the time. I'm even having problems stepping on the flip-top trash can with the floor lever - I have to hold onto the fridge or I "dance" all over. Maybe I should just put on some music and go with it!
Remember the toys, Weebles? "Weebles wobble, but they don't fall down." Well, I do, and I do!
I always wonder..."oh, there's that drunk going to her mailbox..." !
Luckily, Hubby gives me my shots in the back hips. Unluckily, he is working out of state, so he gets his 'shot' on weekends. I haven't had skin problems yet, but I keep looking for those dimples. Have you tried the autoinjector? I used the one for Rebif, but it was more like a rocket launcher, and I finally gave up and started injecting manually. I have the Copax one, but haven't tried it. It is free, so call Shared Solutions if you want to try it.
Don't diabetics usually inject in the tummy? I suppose the insulin and the size of the needle don't cause skin problems like our wonderful drugs do.
~ Shar
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I think the trick is to have some fat on you! Gosh I'm so glad it is good for Something!! Actually when I went through my horrible divorce and lost a lot of weight, I did actually have trouble and called to have a nurse come - you will never guess what she suggested!
She said to instead inject in the fatty part under your arm... I just looked at her in horror and said you first! She left.
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its funny, we all "list" to one side, or the other.. for me, i fall backwards!!my balance hasn't been good, for a long time now.. sing all the bells and whistles, but sometimes ya just go down, no matter what..
the funniest was, we had a rocker, which i should've thrown out.. yep, i tipped back and got STUCK there.. well, my hubs doesn't hear well, the neighbors called, they heard me.. but before they called, my dear little chiuhua went and "bugged" him, woke him up..
then, he couldn't help me up, cause I was laffing so hard! when the neighbors called, all concerned (we live in a villa, and its now 4am when they called.. they thought i was crhying, but it was laughter.. we do get ourselves in predictuments, don't we? i now have to lean on a wall, to out pants, or socks on.. i just pitch backwards, if i don't, and fall forward, if i sit on the bed and try..
its like they say.. where there's a will, there's a way....3jays
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You girls are making me laugh with your stories. My second to last attack knocked out my balance and I had a terrible left lean and felt like I was on a boat. Luckily I recovered. Sometimes I lose balance, but when I really notice is when I tried to get on my sons roller blades some time back. I did so knowing I did fine a few years prior and I was shocked. Let's say I don't have complete confidence in my balance any more.
Did you see the part about my neuro saying in 2013 they are reformulating Copaxone to be every other day? Thought you would appreciate that news They used my tummy to reconstruct my foobs so that would be out, I could inject my legs and maybe hips??? Using the autoject maybe?? I wouldn't touch my arms. I'm kind of traumatized from all this BC stuff and I just don't know what to do about the MS treatment. (Just as an FYI the dents in my skin snuck up on me. Wonder if I didn't rotate good enough.)
Did you know about the BC Shar when you were on Rebiff? I take the rocket launcher is because it is intramuscular? I think that may be easier to do manually. Would scare the crap out of you when it launches. -
Rebecca, no not on Rebif - only had MS then. I was dx'd while on Tysabri. Darn, I was doing so well on it, too. Rebif is sub-Q."Rocket launcher" was for self-inject, or those afraid of needles.
3jays, where was the camera that night?! What a missed opportunity! Too funny!!!
Copax every 2nd day? Sounds good to me. Rebif was 3x week - better. Tysabri was an IV once a month (every 28 days). Ahh, those were the days!
Saw notice today that a new, oral pill has been approved, and will be ready for prescribing Oct 1st, "Aubagio" It's daily and seems to have the same efficacy as the other ABCs.
We need to recruite some right leaners! Otherwise, we 'll all go down l.ike a row of dominoes!!!
Nite all - Shar -
YA KNOW, I SOOO WISH WE had TAKEN A PIC, BUT I WAS LAUGHING, AND HE WAS TOO FREAKED OUT.. WE DIDN'T THINK OF IT!.........3JAYSsorry neuropathy is making me hit the capital button, and i don't look........
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OOoohOOOOH OOOOOHHHHH - Me Meeee I lean to the Right!!! Great I'll hold everyone up!
Yes I agree you all are in trouble .... and I'll be on the bottom! But laughing with 3-jays!
Actually I went to Bermuda (on a JoB!) and we got the little mopeds- I was 23 thought I was grand. Well the first trip into the city I stopped and parked the little moped and just as I turned to walk into the store.... yes it fell - the poor little thing- but knocked over 6 Giant Harley Motorcycles and these huge men came running out. I think the look on my face softened them as I thought they were going to kill me. And yes it went to the right as well.... hummph.
3jays- we just have to keep laughing! Well we all know about the mysterious bruises but I have a weird one. Two days ago I noticed a bruise on my left hand(front)... and then a really dark one on my wrist. Well last night my hand started hurting horribly. Actually feels like I could have broken it but it works fine... just horrible pain. Now I have No idea how I did that one as a knock here or there I can understand but one's hand??? Glad this thread is going again.... Hey Shar - we might be so scary after all!
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Stanzie...we must be! Although, now, since my hair is no longer sticking straight up - I've lost a little "scary"!
Wow, what type of job did you have? Sounds adventurous ( and a little dangerous!).
Mysterious bruises - don't know how, why or sometimes even where. I seem to bruise easier since chemo, and hurt more since then. The other morning I dropped a disposable razor, and the handle hit my bare toe. I saw stars!!! Really??? I'm a real pain wimp, now. Since I'm MS-clumsy, I hit my hands and feet all the time. Ouch. I get a lot of bruises from my Copaxone shots, too, but they do fade quickly.
MS has been kicking my butt (actually my legs) all summer, with the high temps we've had. It's finally cooling down, and my legs have decided to cooperate. Good thing I did well with BC treatment, 'cause I don't have time for it anymore - MS is a diva and expects top billing. Back to my "normal".
We've been quiet here. How are you all doing?
Take Care - Shar
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I was a stage/tour manager for small musical for Middle school kids. It was great but the actors were young and a pain... oh well, being in Bermuda for 3 weeks was pretty amazing.
Well, I figured out about my hand.... I had forgotten I had to have blood taken and they couldn't find a vein so used my hand. Now that was a week ago past Monday and still so very painful. This is the first time I've had blood taken from my hand, is this normal? I need to figure out how to make my one arm vein jump up and be noticed.
I get the MS whimp and Diva!
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Stanzie - try drinking water before lab work. That's what they told me. Glad those bikers didn't kick your fanny! Lol.
I read something recently to the effect that a person feels more pain due to fibromyalgia. Do you think that's the case with MS too? I think I am coming back so much slower from surgery, still need pain meds at bed time and ibuprofen in the day, cannot sleep on my sides and I am almost 9 weeks post. It took me 8 weeks after lumpectomy to sleep on side.
On the topic of heat...it is 100+ in So Cal lately. I live at my sister's currently (house is in Oklahoma....long story) and she has been putting thermostat at 78-79 degrees to save on electricity. She's killin me!!!!!!! I have told her but people don't get it. They just don't. So like Spica, will your legs make full recovery? I'm so frustrated by this.
Other than that, I turned the corner at about 8 weeks and started to feel human again. I am happy with my results, but need some rework on left breast which is scheduled for Dec 27th. I will need to have lipo done for the fat grafting...darn! (wink, wink)
Alright, enough out of me. Have a good day! -
Beckers! LOL! Remind us closer to the surgery to we can be sending you good skinny thoughts, oh healing ones too!
Yes, I thought about that when she was searching for a vein! Should have had more water... thanks! Hopefully I'll remember next time!
I've always had a really high tolerance for pain and so far I think I still do so when I do feel pain I'm thinking I should really pay attention to it. I just seem my teenagers who are getting used to their growing bodies and they bump into everything _ just like me! But oh my they just scream in pain over the tinest thing so??
My son with Down syndrome can go crazy in pain if you gently brush his hair but once found him sitting in a fire ant next and no problem! so Huh? Weird stuff pain.... I just think Doc's need to listen carefully to patients as I think we all do feel pain differently but it doesn't mean we are not feeling it.
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This thread has been dormant. Question....have any of you been told Tamoxifen can make MS worse? My MO told me this. Of course my legs are giving me fits now. Power of suggestion? (I'm afraid of AI's due to potential heart damage.) just curious to know if you've heard this.
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Hi there,
I just happened to bump into this while googling something MS related. Dr. Kreasa-Rheal is my current MS doc (I just love her too!). In case you haven't found her yet, she's at Providence St. Vincent's now. Here's a link her office: http://oregon.providence.org/patients/programs/providence-multiple-sclerosis-center/Pages/default.aspx
I hope you are doing well.
Misha
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Hellooooo...
Anybody out there?
Stanzie, Beckers, 3jaysmom, and anyone else I have missed...
There is a new topic Breast cancer and MS (in forum Breast Cancer with Another Diagnosis or Comorbidity). If we all head on over there, maybe we can get the conversation flowing again. See you there!
~ Shar
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couldn't find the other site..whats in under.. friendships after treatment..where ??
It looks like the new neuro may try copaxone after i have the mri in 3 more mopnths. have to wait till the stents become part of the body to have an mri..Yikes.. 3jays
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3 jays, I couldn't find it either. Thanks for reminding me so I can look again. I was on Copaxone and may have to go on it again. I am scared to take with BC. Afraid to modify immune system. I feel my MS a little too often for my liking though.
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if you find everyone, let me know k??3jays
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I found it. Look in all topics under the heading that Stanzi said above. It's still pretty quiet over there I think.
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i'll go look tonigh
t. i hope things are going alright with you, too.....3jays -
I am 39 & have been managing MS since I was 18. I started with Avonex and progressed to Tysabri. My Mum & 5 of her sisters have all had breast cancer (no cancer gene). One of my Aunts also got ovarian cancer which took her life (ovarian cancer gene). My fathers mum died of breast cancer. I was told that I could have up to 80percent chance of getting breast cancer. I am considering getting my breasts removed. Any thoughts?
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Somorbo, I would have genetic testing done to confirm that you are posetive. They have a few you can do. Maybe call a cancer center. Good luck to you!!
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Samorbo, we totally agree with Beckers that you should get genetic testing yourself. Perhaps these pages could be helpful to you as you navigate your decisions.
http://www.breastcancer.org/symptoms/testing/genetic/get_results
http://www.breastcancer.org/treatment/surgery/prophylactic_mast
Best wishes,
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