Multiple Sclerosis and Breast Cancer

wackyjackie · January 2009

wackyjackie · January 2009

Ladies,

My sister is 46 years old and has just been diagnosed with dcis. She's still having tests...e.g. MRI. I'm look for anyone who has input on having both breast cancer and ms, as she now does. Does chemo interfere? Do you take meds for ms? Any information at all would be helpfu. Thank you.

Hugs, Jackie

wackyjackie · January 2009

No one out here on this board has MS and breast cancer???????

ghety · January 2009

Oh Jackie, I hope you get some answers soon. I can't imagine having to deal with both of those issues! My heart goes out to both you and your sister. Keep checking back, someone is bound to have experience with this.

Carole

ghety · January 2009

Forgot to mention - I don't think chemo is necessary for DCIS, because it is not invasive.

Mobetta · January 2009

Hi Jackie,

Mitt Romney was a governor here in Massachusetts and a presidential candidate for the Republican party. His wife, Ann Romney, has MS. She was diagnosed with DCIS and it was in the news last fall when I was diagnosed with DCIS. If you google her along with "MS" or "cancer" maybe you can get some info that may be relevent and helpful to your sister. I didn't care for Mitt Romney, but his wife has been very open about her illnesses, and there were many articles in the Boston papers that could be of interest to you. Good luck to your sister. ~Mobetta

CaseyDoodle · January 2009

Well, it appears that your sister and I are part of a pretty exclusive group. I am 51 years old and was diagnosed with MS almost 23 years ago. I was dianosed with breast cancer in April 2008. As far as chemo is concerned, I took Taxotere, Carboplatin and Herceptin and my MS symtoms were non-existent during the 4-1/2 months of chemo. I am currently taking Herceptin and have no side effects and it has no effect on my MS.

I am currently recovering from Lat Flap surgery and will write more when up to it. Please PM me if you have any other questions.

wackyjackie · January 2009

Ladies,

Thank you so much for your responses. I will google Mitt Romney's wife, Mobetta.

Ruby, thanks for your concern.

Casey, my heart goes out to you. You sound like a very strong person. Thanks for the information. My sister is not ready to join the boards but I'm trying to get as much info as I can for her. I had lat flap surgery in April and I know you need your rest. Thanks for taking the time. Good luck.

Hugs, Jackie

dmh2418 · January 2009

I have lupus and bc. I had a lump and rads. I took a break from the rads to go on vacation and I think that helped with the fatigue and wear and tear on my body. The tamo presented a lot of se's similiar to a lupus flare so I had to take a break for 30 days. My 30 day break is up this week so I'm waiting to see what my onc wants to do. She doesn't think the tamo caused the se's, she blamed it all on my lupus. I have a call into my Rheumatologist to see if I should continue if it makes my lupus symptoms worse. Just be honest with your docs and listen to your body.

Oopher1 · January 2009

I am 56 yrs old dx with MS in 2000 and Breast cancer in 2007 for IDC a 1.1cm tumor, erpr+, her2+ no node involvement. I am taking Avonex for my MS. However, when doing chemo, I was not to take my Avonex, as both my oncologist and neurologist did not want my liver to be so stressed. While on chemo I had no problems with my MS. Actually I felt very good and was told by my neurologist that this is usually the case. My chemo was the taxotere, carboplatin with herceptin..then finishing herceptin for one year. Per my neurologist I was able to start back on my Avonex shortly after completing the chemo part of my treatment. I could take my Avonex while taking herceptin. I had the mammosite placed for radiation treatments. Good luck with whatever treatment your sister is having.

Ruth Ann Smile

wackyjackie · January 2009

Ruth Ann,

Thank you so much. Your information is so helpful. Good luck.

dmh, thank you too.

Hugs, Jackie

JeanieS · January 2009

wackyjackie, I do not have MS but I am a nurse who took care of MS pts. for years. I also was Dx. with DCIS last Sept. Just wanted to say hello.Please tell your sister I am thinking of her.

Jeanies

wackyjackie · January 2009

Jeanie,

Thanks so much. I appreciate your concern. How are you feeling? Did you have any treatment or surgery? If you don't mind my asking.

Hugs, Jackie

JeanieS · January 2009

I am okay now. I had 2 lumpectomys in the fall and radiation for 33 days ending Jan.5th I felt fatigued for a month but am happy to say I am now doing well. The Dr. wants me to start Tamoxifin in a few weeks, I am afraid of the side effects. This is a hormone med. that people usually take after there cancer Tx.

How long has your sister being DX with MS? How is she doing with the MS? How are things going with the dcis Dx?

Hugs, Jeanie

Bobbiew · January 2009

I was diagnosed with MS in July 1996. I was diagnosed with breast cancer in November and underwent a lumpectomy. I am now doing radiation and am about half way through it. So far my biggest complaint is the fatigue. The "sunburn" is also fun.

Under "normal" circumstances my energy level is low but the slight fatigue they talk about with radiation therapy is amplified for me. I'm exhausted!!

Once I finish the radiation I'll be going on Tamoxifin. I also am nervous about the side effects. I'm very sensitive to heat and I'm terrified of hot flashes!

Anyone with experience?

CaseyDoodle · January 2009

Bobbiew, As I wrote early, I was diagnosed with MS in 02/1986 and breast cancer in 4/2008. I went through a dbl mast and then chemo. As soon as chemo was complete in 09/2008, I began taking Arimidex as soon as I completed chemo.

I am also very sensitive to heat due to MS, but the hot flashes do not affect me. The hot flashes for me feel as if I am burning from the inside out and don't raise my body temperature. I was really worried about it too.

I hope this is your experience as well. Take care.

Jan_4_mom · January 2009

My mother is 66 and has been diagnosed with MS since she was 36. She has just been diagnosed with breast cancer but we are unsure yet to what extent. I have read all of the posts regarding this and am wondering why the chemo appears to help the MS. Does anyone know? I would have thought the opposite. My family and I are concerned that chemo treatment would make the MS worse.

glendag · January 2009

I believe it is because the chemo is an immune suppressant. MS, is an auto iimmune disease. High dose steroids are given during an MS attack to suppress the immune system.

Bobbiew · February 2009

CaseyDoodle, thanks for the personal insight. I'm relieved that my fears about the hot flashes may be unfounded. I talked with my neurologist and he thought that the hot flashes would be like walking outside on a hot summer day. NOT a good idea for me!

Good luck to you!

ntelesky · February 2009

Hi - I have recently been diagnosed with breast cancer - I was diagnosed with MS in 1995 and do very well. I am trying to get my plan of attack figured out. This is all very confusing. I too am concerned about heat up and am curious about anyones experience with radiation, chemo or mastectomy.

Strength to All

Bobbiew · February 2009

ntelesky - I'm on the home stretch with the radiation. I only have five "boost" treatments to go. My biggest problem with the radiation is the fatigue. When they say mild to moderate fatigue they don't understand that with MS you start your day fatigued and adding anymore fatigue just wipes you out. I'm on short-term disability right now.

I also am having a difficult time with the reddness caused by the radiation. For me, it's like a really bad sunburn. Personally, I've never burned my breast or nipple!! It's not fun.

My nuerologist is starting my on a monthly course of IV solumedrol this afternoon. Hopefully, that will help with the fatigue. I'm spending about 20 hours a day in bed and I'm bored to tears!

I had a lumpectomy and no chemo so I can't give you any information on those.

Keep up the faith. This too shall pass!!

glendag · February 2009

New study MS, Stem cell and chemo...interesting

Link: to Northwestern University

Stem cell transplant reverses early stage multiple sclerosis

CaseyDoodle · February 2009

netelesky, as I posted earlier, chemo had a positive effect on my MS. Because MS is an auto-immune disease, anything that suppresses the immune system will make the effects of MS diminish. Early on in my diagnosis (1981), I was given ATCH in small doses and it always worked. When I started chemo in June '08, the fatigue and weakness along with the numbness I have experienced since the onset of the disease were dramatically better. Unfortunately, the chemo made me very, very sick, so I didn't really get to enjoy the improvement.

As for the mastectomy, surgeries always knock me for a loop. I have friends with MS that don't have the same reaction. For me, the recovery from any surgery is much more difficult as it seems to exacerbate the disease, especially the fatigue.

I didn't have radiation, so I can't add anything there. I wish you the very best as you begin this journey. If I can be of any help at all, just PM me.

Kay

ntelesky · February 2009

Bobbiew - Thanks for the info - I have a friend who had a bad time with blisters from radiation. The only thing that finally brough relief was Banana Boat after sun gel with aloe. I'm going to stock up before I start. Give it a try !!

Thank goodness for these support outlets Innocent

Bobbiew · February 2009

netlesky - I finished my radiation yesterday. Yea!! Smile

I've tried using pure aloe gel (it's in the same section of the store as the sun screen). The doctor recommended it because it wouldn't interfere with the radiation. I didn't care for it but I did like Aquaphor. It's thick like vaseline but it seemed to help with the itching and chapping. It's by Eucerin and it's in the lotion aisle.

I used that and corn starch since you can't use antiperspirant/deodorant or talcum powder. I just filled up a small plastic container and left it in the bathroom. I used a big fluffy blush brush to apply it.

Good luck with it all. I agree these support sites are wonderful. Who better to answer questions than someone who has been through it too!

ntelesky · April 2009

Hi Girls, I,m back after a few weeks of appointments and descision making. My question is if anyone out there has had or heard of a program Sloan Kettering is offering for a trial. Treatment for radiation is given for 10 days 2 times a day They tell me I am a perfect candidate but I am so leary about if this would be too much for my body. I do not work so for 2 weeks I think I can deal.

Thanks for sharing - What a relief to know you are out there!!XOXO

Kaz12 · May 2009

Hi everyone, man am I glad to have found these posts. In 1994 I was diagnosed with MS, last Aug 08 I was diagnosed with breast cancer. I have talked to no-one else who has had both, I felt like a major anomoly, none of the med people had dealt with it either. I think it's a numbers game though...BC is 1 in 8 women, so of course there will be women out there who have that and another condition, it just seems really unfair to get both cos they are both so serious.

I had a mastectomy of left breast last Sept. Was out of hospital the next day but back in after a week with a cellulitis infection, which is unheard of for mastectomies. I was very sick, near-death I was told later. The cellulitis hit me hard and I was exhausted for weeks afterwards. Then I thought I was cured cos no cancer in the lymph nodes. In December I found a lump in my skin where my breast had been, it was a reoccurance which was very, very bad so heaps more tests too see if it had spread.

So then I had to have radation and OMG I was sooo tired, 10times worse than usual.

MarthaBunch · July 2009

I am so excited to have found this discussion board! I have MS, diagnosed 3/98 and have a fairly unremarkable relapsing/remitting time of it. November of 2008 diagnosed with breast cancer. I'd been on Avonex for several years and had started Tysabri in August of 2008. I've discontinued all of my MS treatment while dealing with BC. I had three lumpectomies (11/08; 1/09; 2/09) then underwent bi-lateral masectomies with TRAM flap reconstruction 4/09 then skin grafts for failed nipple doohickies in 5/09. I began chemo 7/09 cytoxan and Taxotere/cytoxan and Abraxane(severe allergic reaction to Taxotere, mild allergic reaction to Abraxane after 80% IV rec'd). I'm beginning Cytoxan/Adriamycin 8/3 and a bit nervous about the Adriamycin drug.

I am encouraged to hear the fatigue factor that has been mentioned in relation to surgery! I mentally berate myself for being lazy/not sleeping right/just copping out of pushing myself to do things and I realized reading this tonight that I am not paying much attention to the MS factor. I have been advised chemo really mitigates MS flares as it suppresses the auto-immune feature MS has given me. I am having some warm/burning sensation in my lower left leg and foot that I feel may be MS related rather than my first round of chemo treatment but when I mentioned it to my nurse she wasn't sure to what it could be attributed. I have taken longer than I thought to physically heal from surgeries. Surprisingly, I who have always run a bit warm and can't tolerate the warm temps well, now find myself on the cool side since the bi-lateral surgery. I am comfortable keeping my house at 80 degrees now where before 80 would be a temp ready to melt my MS brain. I began losing my hair last Sunday (yesterday) at day 13 post first chemo. I cannot believe how bad my scalp hurts, as if someone has been pulling my hair for hours kind of thing. Not what I've read in the literature I've been provided thus far. I hope that discomfort goes away when my hair has completely jumped ship..

Any experience you can share regarding Cytoxan/Adriamycin treatment? What side effects? How/Did it affect your MS? Have you experienced the scalp discomfort I've described? If so, what helped it/when did it subside?

I'm "loving" the heck out of BC (filling myself with positive stuff) so that it can be gone as rapidly as possible and I don't have to always feel like I'm fighting. I like the positive "get the hell out" approach rather than throwing punches. On the other hand, I'm not enamored of this unwelcome visitor. 1 in 8...why? How do we make sure our daughters/nieces/friends are not in jeopardy of hosting BC?! A cure in our lifetime please.

COOLMSBEAN · October 2009

I am 39 DX in 2002 with MS - Friday Oct 16, 2009 DX with BC. I am at the beginning of all this and I have a 19 year old son, a 2 1/2 year old son, and a 3 month girl. I am looking for some insight and motivation about this whole situation. I look forward to hear from you. Thanks

LoriO · November 2009

Hi everyone, I'm 50 years old and diagnosed with relapsing/remitting multiple sclerosis July 2000, then invasive lobular breast cancer, March 2006. To say the least I couldn't believe it... How could I get 2 bad diagnosis'! Went through several treatments for breast cancer: mastectomy, chemo. radiation and finally an implant (saline) to finish my reconstruction. I'm currently taking Tomoxifen and Avonex for the ms... the side effects of Tomoxifen (chemically induced menopause) I can live with and I keep the ms under control. Happy to say I'm doing well! Hang in there everyone you can do it, I did!

MsBliss · November 2009

I drifted onto this thread right after reading about Vitamin D--the low levels associated with both MS and bc....has anyone on this thread had their vitamin D levels tested? Did your doctors suggest some vitamin D supplementation at any point, and if so, did it help?

Multiple Sclerosis and Breast Cancer

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