Multiple Sclerosis and Breast Cancer

Options
191012141518

Comments

  • Nana2three
    Nana2three Member Posts: 31
    edited June 2012

    I know I'm in the wrong forum since my BC is Her2, but having MS also this forum helps me.  I am on herceptin and was taken off all MS meds since there is no data about Copaxone and Herceptin.  After 3 months the MS is just getting progressively worse and MRI shows new lesions.  So neuro and I along with oncologist decided to start taking Copaxone again.  I had been on it for 8 years and did well.  Teva(pharmaceutical co. that makes Copaxone) states they have no data and basically won't tell me to continue the daily injections. 

     I've been back on Copaxone for 1 week after being off for 3 months.  I know it will take several months to build back up but so far I have had no interaction and after completing 1 year of herceptin we'll decide the next step.  Good Luck friends with your treatments and hope the MS is stable.

  • Justsayyes
    Justsayyes Member Posts: 34
    edited June 2012

    Hello Spica and Nana!  Didn't see your posts until now.  Luckily I do take Provigil for fatigue and I know it will be a huge help during radiation.  I keep hoping someone says....oh no, you don't need radiation.....but since my DCIS was high grade, I don't think that will happen, darn it.

     When a medication works for you, it's a relief, and Avonex has worked for me for all these 8 years.  I recently read a long-term report discussed at a conference, and the doc said Avonex has proven to be more effective than early trials showed.  Nana, ITA to get back on the Copaxone wagon since it worked well for you.  Never thought I'd be on one medication this long....

  • Spica16
    Spica16 Member Posts: 130
    edited June 2012

    Hi Judy,

    Yep - I started Copaxone the third week of rads. Non of my docs seemed concerned about it. Both my neuro and the specialist neuro recommended it.

    So far - so good! The worst part for me is the daily injection...tedious, but doable. It does sting, but that subsides in 5-10 mins. I'm not getting the lasting red welts like I did on Rebif. These are faded by the next morning. It is a very thin needle. An important thing to know...don't rub the area after the injection. That is hard because the first instinct is to rub the sting away! They say that rubbing interferes with the drug's mode of delivery.

    Something very nice is that now Copaxone can be unrefridgerated for up to 30 days. I would never go that long, but sure comes in handy if you are traveling or, in our case, camping for a few days.

    If you do get on Copax, take advantage of all the free goodies that Shared Solutions (Copaxone patient support services) will send you upon request. They have a plastic locked refridgerator box, a zippered travel bag for all your supplies, a nice daily planner, lots of alcohol wipe packets, and misc. other things to make life on Copaxone easier.

    I hear you about medical expenses this year. Yikes! I haven't seen the actual cost of Copax, but I have a monthly copay of $35 on my Hubby's work insurance. 

    I hope you are feeling better, with your symptoms settling down. Good luck with your decisions.

    Take Care ~ Shar 

  • Spica16
    Spica16 Member Posts: 130
    edited June 2012

    Justsayyes,

    It sounds like radiation after lumpectomy is the gold standard, now, so you probably will receive it. Bonus for you...no chemo!!! Makes dealing with MS so much easier (as if dealing with MS could ever be easy!).

    Here's rooting for Provigil to pull you through with energy to spare!

    Take Care ~ Shar 

  • Spica16
    Spica16 Member Posts: 130
    edited June 2012

    Nana,

    Hope the Copaxone kicks in and does it's job for you, as before BC.

    So far, so good - for me. Hope you are, too. 

    Take Care ~ Shar 

    P.S. You belong on this forum - we seem to be a mixed bag of BC dxs, but we all have MS stories to share. Stay with us, friend! 

  • Spica16
    Spica16 Member Posts: 130
    edited June 2012

    Oh Stanzie, sounds miserable. Especially troubling when you're driving!

    I started having foot cramps (spasms) - of the instep - a few years ago. Neuro put me on baclofen, and later switched me to tizanidine (generic Zanaflex). It did help. I often have to pull back on my toes to make it stop and massage the instep. I always worry about it happening when I'm driving...or having a MRI!!!

    Perhaps your new pain is just a reaction to the stress of the accident?

    You know the routine...see your neuro and have it checked out, blah, blah, blah.

    Hoping your MS settles down real fast.

    Take Care ~ Shar 

  • Spica16
    Spica16 Member Posts: 130
    edited June 2012

    Hi 3jays,

    Hope Summer is treating you well. Is that possible in FL???

    It finally turned hot here - but it is dry heat. Still miserable for a MSer, but not anywhere as miserable as the humid heat that I grew up with in Michigan. Can't imagine how you cope with heat & humidity in FL!!!

    Stay cool ~ Shar   Cool

  • Justsayyes
    Justsayyes Member Posts: 34
    edited June 2012

    Hello Ladies!  Is it hot enough for everyone?  Only reads 94 degrees so far today, expected is 100, yikes!  Shar so nice of you to personally address our unique concerns, how are you doing?

     As for those darn muscle spasms.....I stretch every day and it can be excrutiating.  Been wearing a TENS unit around my right hip at night.  A bit of sciatica going on.  I do well taking 5 mg. flexeril at night, it is a mild muscle relaxer.  Lets me empty my bladder more fully before bedtime, better chance to sleep longer.

     I'm thinking of putting on the cooling vest today! 

  • Sandyflats
    Sandyflats Member Posts: 52
    edited September 2012

    Hi, Everyone. The mods referred me to this post from another thread because I have MS and will have a bilateral mastectomy next week. I see that most of the posts on this thread are about mixing MS meds with cancer treatment. I am not worried about chemo because I already used chemo for MS, successfully. I wouldn't think that chemo will cause a problem as long as I can tolerate it.

    I hope that it's okay for me to ask another question here, related to bc and MS but not to meds. I'm wondering about mobility after surgery. I have very weak legs at the best of times and use a cane. With a double mastectomy, I'm wondering if I'll be able to get around. I can switch to a walker, which is what some people have suggested, but I would have to be able to put weight on my arms. Have any of you got any tips for getting around after a double mastectomy with very weak legs, or just about going from lying down to sitting up? I received some very helpful tips about recliners and walkers from people in another thread, but I thought that it might be helpful to ask people living with MS.

     Maybe this isn't going to be an issue, but the physio I met with at the hospital told me that since I'm having some of the chest wall removed it's going to be a protracted recovery process and that it will be up to 4 months before I can use a cane. She has never had a patient who also has MS and wasn't sure how it would affect me, though. Other people have assured me that I'll be shopping in 4 days, using my cane again.  

    My doctor also told me that surgery could trigger a flare ... so I'm delighted to read here that many of you had surgery without a kick in the butt from MS. 

    Thanks!

  • Justsayyes
    Justsayyes Member Posts: 34
    edited June 2012

    My goodness the problems of mobility can present such a challenge.  I don't have any answers, I was trying to find a thread on another board where I believe that MSer stayed at a rehab facility for a few weeks following surgery.  So did my next door neighbor who has early onset parkinsons and needed extra care following a surgery. 

    I had another minor outpatient surgery 5 years ago, and the anesthesia team discussed giving steroids during the procedure.  I did not elect this, but it might be something to discuss.  It was never mentioned to me this time.

    I did rent a lift recliner for my dad recently.  It cost about $300 for a month, but we had to be careful as they didn't prorate, if you went a day over the month you have a second charge.  Do read all the fine print on these rentals. 

    Hope you can get the info you need, I wish I was more help!

  • Spica16
    Spica16 Member Posts: 130
    edited July 2012

    Hello & Welcome, Moeness,

    Sure hope your upcoming surgery goes smoothly and you recuperate quickly.

    Oh my, mobility after double mx is a hard question to answer. Are you having axillary node dissection along with the bmx? It seems that most gals complain about that part of the surgery being the hardest part to recover from. Suddenly your armpits become demanding divas!

    My hospital PT started me on stretches the next morning after surgery, and my home-health PT really gave me a workout each time she visited. You will need to keep stretching that area, to help with ROM of the arms and upper chest area. It hurts, but in time, it does get better. Not only do you need to have arm mobility, but you need to keep lymphedema at bay, if you have lost lymph nodes. Your PT will be your best friend!

    Getting up from the bed is a challenge with UMX. I had to log roll, and then push myself up with my 'good' arm. You can do it with BMX - you just have to use either 'bad' arm. Make sure they show you how in the hospital. Will you have someone at home to help you? It would be best, at least for the first couple of weeks. Once the incisions start mending, it gets easier. Once the drains are out it gets soooo much better. 

    The idea of using a recliner is a good one. Going from laying flat in a bed to upright is tough. Going from a sitting position to standing is a lot easier in a recliner, for sure. As we all know, they get you standing and walking very quickly in the hospital, and expect you to do the same at home. (No rest for the weary!) Even though I grumbled at first, it did pay-off with faster and better recovery and mobility later. And we MSers treasure mobility!

    A walker is also a good idea, especially if you are on pain meds. It helped me at first, since the pain meds and my usual wobbliness made walking rather goofy. Safety first! I needed the walker mostly for balance. If you need support from it, you will put more pressure on your arms/chest. Again, it will get more comfortable in time.

    I wouldn't want to shop in four days, but then, it depends on you! If you have been doing that pre-BMX, you might be in shopping-shape, and get back to it faster, than most. Just remember to factor in fatigue, also -  fatigue from meds, surgery, and your old friend, MS. Take it easy - you deserve a good rest!  You'll be back at your usual busy life before you know it. I had all these things planned to do during recovery and then chemo - like catching up on reading and hobbies. The time went by so fast that I didn't get half of them accomplished. It looks like a long time from the start position, but it actually goes fairly quickly. I think it's because we are so consumed by the whole BC experience.

    Moe - you are in the right place. Most of us are past surgery, and even chemo and rads. We are dealing with MS treatment after BC treatment. You will be joining us before you know it!

    Welcome to the "I've never had a patient with MS before" world. My MO told me that I'm his first MSer who went through chemo. Of course, I live in a rural area, so the number of MS patients is a whole lot smaller. I guess I'm a MS/BC pioneer, which is fitting because I live near the Oregon Trail! We have to teach these docs all about treating BCwithMS. Onward, ho!

    We'll be thinking about you and wishing you a speedy recovery. Stay in touch.

    Take Care ~ Shar 

  • poohb3ar
    poohb3ar Member Posts: 1
    edited July 2012

    hi! i was dxd MS 2002. with DCIS 2 wks ago. July 2012. i have to decide if i want breast reconstruction with a saline insert at time of dbl mas. did you have trouble with the implants? after reading about scar tissue and how steroids affect the implant, i'm worried about more surgery. i'm being proactive to reduce my cancer reoccurence to 0! mom & granny both died of breast cancer returning elsewhere. 

    PLEASE if anyone can help me about reconstruction if it's worth the risks and extra surgeries (i'm used to being small) with MS i would really appreciate.

    God bless all of ya while we travel this bumpy road! 

    poohb3ar:) 

  • Beckers
    Beckers Member Posts: 1,883
    edited July 2012

    Im an MS'r too. Fortunate that I average 1attack per year starting two years ago. Was in remission. Not on ABCs any more. MS was ok after bilat lumpectomy. Surgeon gave steroids via IV during surgery. Having BMX and DIEP reconstruction in a few weeks. First surgeon didn't want to do because of MS. I think I will be ok, but nervous.

  • Spica16
    Spica16 Member Posts: 130
    edited July 2012

    Hello & Welcome poohb3ar,

    Cute name!

    How is MS treating you now, after 10 years? Hopefully it is stable and will remain so during BC tx.

    I can't offer much advice - I had a single mastectomy, and elected to have no reconstruction. I was almost 58 at dx, and decided that I didn't want anymore surgery, and could live with my flat side. I will admit that it is quite awkward having only one breast. Oh well, my "foob" fills in when I want to be girly. The biggest reason for no reconstruction for me was that I have MS banding around my chest area -"MS Hug" - especially where my bra band is. It is caused by MS lesions at T6-T8 on my spinal cord. I just didn't want to risk upsetting that area anymore than I already had with surgery and rads. Actually, I did really well, with no new MS flares during surgery, chemo or rads. My recovery has gone well and fast. I probably would do okay with reconstruction - I just don't want or need to go through it. But...that is my personal choice.

    Your choice depends on so many things. How old are you, and what do you want, body image-wise. What are you willing to go through and what results do you expect? What are your MS symptoms? Are you in good health, otherwise?

    Don't let MS stop you from reconstructing, if that is what you desire. Your neurologist, surgeons, oncologists and all others involved, will be able to get you through it. I don't know about the steroid/implant issue, but your surgeon/plastic surgeon should explain that to you beforehand. Demand that information from them! Are you having radiation after surgery? Radiation does cause inflammation of the chest tissues, but to a degree that would impact MS, I'm not sure. I had no MS-related problems with rads.

    Have you been tested for the BRCA gene mutation? With your family history, it would be valuable information for further BC treatment. Removing your breast tissue greatly reduces your BC-recurrence risk, but it doesn't bring you down to 0%, just very low. Again, question your docs until you are satisfied and comfortable with their answers.

    Get your neurologist involved and talking to the rest of your docs!!!

    Hopefully, someone will speak up here with a similar story, and be able to tell you their experiences with MS, reconstruction and implants. This thread tends to be slow - I'm hoping they log on soon.

    Good luck with your decisions, and here's to a speedy recovery. May the road of your BC journey be smooth with no potholes!

    Keep in touch - let us know how you are doing.

    Take care ~ Shar 

  • Spica16
    Spica16 Member Posts: 130
    edited July 2012

    Thank you for joining the conversation, Beckers... and Welcome!

    Wow - only one attack per year - that's great! Hopefully, your remission will continue. It sure is nice to be relapse-free. I haven't had one since 2008 - and I'm loving it! I made it through surgery, chemo and rads with no problems. 

    As I said on my previous post...get your neurologist involved and talking to your BC doctors. Surgeons, oncologists and radiologists don't seem to know much, if anything, about MS. That is probably why your first surgeon was so hesitant to deal with you. I hope your neurologist can help soothe your nerves, and give your other docs the info they need to understand how to care for you.

    Good luck with your upcoming surgery. Here's hoping for a speedy, easy recovery. 

    Take care and keep in touch ~ Shar 

  • topless
    topless Member Posts: 74
    edited July 2012

    I've had MS since 1987.  There were no MS drugs then except steroids but since then I've been on Avonex (horrible), Copaxone for 7 yrs and had 6 doses of Novantrone in the past 10 yrs.  I've been on and off Tysabri for 2 yrs, and now use a cane and leg brace.  I had a BMX last Sept. and as soon as the drains were out I was pretty much back to where I was before the surgery - Pilates and indoor rowing machine for exercise and the cane and brace.

    I also had a sudden onset of severe ulcerative colitis in 1974 and all of my large intestine was removed and I've lived with an ileostomy since then.  5 yrs ago I was diagnosed with Interstitial Cystitis.  With a history of 3 auto-immune diseases I was not a candidate for implants because my touchy immune system made for a bad prognosis in healing well. Because I don't have much fat and my belly is already occupied with an ostomy I couldn't do auto-implant surgery either so I go flat or wear foobs ( the chicken cutlet kind from Target). 

    To me breast cancer (I had pure mucosal invasive breast cancer) was a bump in the road because I consider it cured after the BMX whereas I still have to contend with progressive MS, interstitial cystitis, and ostomy hassels every day and forever.      

  • nim88
    nim88 Member Posts: 34
    edited July 2012
    Poohb3ar - my wife has a similar situation to you so I thought I would give you her experience - she was diagnosed with MS in 1996 and with 2 separate primary episodes of BC in 2005 and 2009 (one on each side). After the 2005 epsiode she had had a lumpectomy and radiation. In 2009 she went in for BMX with Saline implants. After her BMX she has been on Tamoxifen. Her MS for many years for RR and she never went on any Western medications but did do Chinese medicine for about 6-7 years till 2003. She had no MS reactions to either the radiation or the saline implants and all the surgeries she has been through (5 in total). However, recently - in the last couple of years or so - her MS has been playing up and we are not sure if her body (or the MS) is reacting badly to the effects of Tanmoxifen or her MS has moved to the secondary progressive stage. We live in Asia but have found a brilliant MS doctor in New York who we now visit every 6 months. He precribed a course of Rituximab and from what we can tell my wife is feeling better. She is also taking a lot of supplements. You can look at my previous posts in this forum and elsewhere on this site if you want more background or feel free to message me if you want more information.
  • Beckers
    Beckers Member Posts: 1,883
    edited July 2012

    Thank you for the welcome. I have upcoming BMX and DIEP, which is quite invasive. I've had hysterectomy and another surgery since diagnosis of MS in '97 with no flare ups. My fatigue has been bad since bilat lumpectomy in April. What has anyone heard with respect to MS. Does it make healing difficult? My brain is not equipped to handle MS and BC right now, but don't want to go into anything ignorantly.



    Also, any thoughts on whether the immune modifying injections made us susceptible to cancer? I remember being struck by the Copaxone info stating something to the effect of being unsure of what affect Copaxone has on tumor surveillance system. Don't know if anyone else noticed that. Hmmmmm...

  • Spica16
    Spica16 Member Posts: 130
    edited July 2012

    Hi Beckers,

    MS shouldn't affect healing, unless you are not in good health, to begin with. Of course, the stress of all this BC tx may affect you, but I just don't see where MS would prevent you from healing well. As topless said above, a compromised immune system may put you at risk, however, it sounds like, from your original post, that your MS is mild. That is definitely a plus for you!  

    I wrote a long post on June 6, page 11, about my seeing a neuroimmunologist for a 2nd opinion. He covered all the MS meds and their risks for me with a BC dx. He had no definite answers - there are none - but he did give me his opinions, based on the research they are doing at his MS center, and others. Those answers made it easier to make my own decisions.

    He did tell me that there is no evidence, so far, that the current MS drugs cause cancer, but that some of them (Tysabri and Gilenya) are suspect for allowing cancer to spread. (Gilenya has shown some cases of melanoma spreading). Of course, anytime that you mess with the immune system...

    He recommended Copaxone 1st and the interferons 2nd. 

    So...we are still at the same point of assessing our own comfort level of risk, and making the best decisions that we can, for ourselves.

    I've been on Copaxone for 4+ months now. So far, so good.

    Good luck with your decisions. Take Care ~ Shar 

  • Spica16
    Spica16 Member Posts: 130
    edited July 2012

    Oh my, topless, having 3 auto-immune dzs is just not fair. Having 1 is challenging enough.

    You are a real trooper, girl!

    I'm glad that you feel good about your BC tx outcomes. I feel the same way about mine. It was good to get that out of the way, because MS pretty much is a full-time career.

    Did having Novantrone have any affect on your BC tx plan, since it is a chemo drug?  

    I hope things stabilize for you. Stay strong!  ~ Shar

  • Beckers
    Beckers Member Posts: 1,883
    edited July 2012

    Thank you for your response Spica. I was diagnosed in '97. I was on Avonex and then Copaxone. Now I'm not on any. Will be see new neurologist in Sept. Hoping for the best when healing from surgery next month. I have really bad restless legs and take Gabapentin. I have noticed I feel like I need to increase the dosage since my diagnosis. Also lost my dad recently. A lot of stressors so I'm not surprised that MS is saying, "I'm still here!"

  • topless
    topless Member Posts: 74
    edited July 2012

    Spica16 - I don't know if I am a trooper, it feels more like I just slog along with whatever my wicked diseases plan for me that day.  I didn't even have to consider chemo because with my type of BC; invasive pure mucinous with negative nodes, I had the choice of rads/chemo or mastectomy. I chose BMX just so I wouldn't have something more to fret over.  My husband and I had been put through the wringer the last couple of years and we needed a break from all the drama.  I'm doing OK, my MS is slowly getting worse but I've done what I could, so I slog.  I will say that the first few Novantrone treatments really did help - I went from constant cane use to very rarely using the cane.  Now though, it's constant cane and brace, scooters in stores (I hate that!) and chronic pain syndrome.  

    I feel my immune system has been screwed with enough over the years and I was glad I could avoid more chemo drugs.  

  • Spica16
    Spica16 Member Posts: 130
    edited July 2012

    Slog on!

    Wobble is my mobility style...sort of like a drunk Gumby!

    Have a good weekend ~ Shar 

  • Stanzie
    Stanzie Member Posts: 1,971
    edited July 2012

    A friend of mine just gave me an article from a Dr. Whitaker's Health and Healing - your definitive gulde to wellness medicine.

     I don't know anything more about this site but the article is titled Low-dose Naltrexone:  A Miracle Drug for Immune Challenges. 

    This man was put on LDN - low does Naltrexone becuase of its safety and moderst cost. He had trouble finding a Dr. who would prescribe it  - off-formula. It apparently really changed his life.

     It is supposed to reduce pain, prevent relapses and slow progression. It also says immune challeged patients have supoptinal levels of the endorphin you get when you have that "feel-good" boost from excercising. But one endorpin in particular - opiod growth factor (OGF) is a portent regulator of the immune system.

    LDN works by increasing the production and utilization of OGF when taken at bedtime. Activity peaks during the nigh and LDN temporarily attaches to OGF receptors sites, displacing this endorphin and blunting its activity. In response, OGF synthesis and sensitivity surges with profound effects on the immune system including suppressing of autoimmuinity, reducing inflammation slowing the growth of cancer cells and staving off infections. 

    Clinical trials have demonstrated LDN's benefits in MS, Crohon's disease and fibromyalgia andn animal and lab studies and human case historeis published in peer-reviewed medical journals have detailed its positive effects on various types of cancers. 

    Whitaker Wellness Insitute began using LDN 5 years ago and have had amazing responces in patiesnts with MS, rhumatioid Arthritis, fibromyalgia, chronic fatigue, ulcerative colitis, hepatictis C, Parkinson's disease, allergies, cold sores and some types of cancer. 

    Because LDN regulates the immune system and ehhances resistance to disease we also prescribe it for healthy people. However it will be a struggle to get a prescription for LDN. Most doctors know naltrexone as a medications for managing alchol and prescription  and illegal drug addition and it is in doese of 50-100 mg. But most of them will be unfamiliar with this low-dose off-label use. 

    His recommendations are 1.5 -4.5 mg of LDN at bedtime. Most MS patients do best on 3 mg. All Narcotic drugs must be discontinued before starting LDN. Otherwise it is well tolerated with the only reported side effect being vivid dreams. 

    Can only be obtained from a compounding pharmacy.

    idnscience.org to find a Dr. open to prescribing or Dr. Whitakers center.  also see lowdosenaltrexone.org. and Julia Schopick's book Honest Medicine.

    Other than reading this article - I know NOTHING more about this so I am not advocating this just passing along information that you may or may not want to disscuss with your doctor. I have no idea how "out there" this is as I don't know anything about Dr. Whitaker. But just say this and other diseases and cancer and thought I'd pass the info along.... As always please check with your doctors. Maybe this will help someone.... I will ask my Doc at my next visit but I already know he won't even look at it as he is pretty set in his ways. 

  • topless
    topless Member Posts: 74
    edited July 2012

    Spica - Yeah I hear ya!  I used to describe my "walks" as more like controlled toppling foreward.  People kept telling me to "look up" but if I looked anywhere other than at my feet I was doomed!  Good weekend to you too.  This heat wave is making my summer boring.  I get really symptomatic when I get hot so I'm spending my summer indoors and I'm getting cabin fever.  I venture out at night like a vampire with a headlamp on so I can tend to my garden.  I hope it gets cooler soon but the forecast just looks the same; high 90's - 100's for next 10 days.  I hate it!!!

  • Spica16
    Spica16 Member Posts: 130
    edited July 2012

    topless,

    Same here - 90s all week. I go out to water the garden around 9pm. Of course, that's prime mosquito time, so it's icky-sticky bug spray on first. Yuck! And...they are warning again this year of West Nile. Oh goody. I sure don't want to invite LE with bug bites, but the warning to wear long sleeves and pants...yeah, right.

    I am in Eastern Oregon - the hot, dry side. We always famously say: "but it's a dry heat"- yeah, beats high humidity (I'm originally from Michigan, so I know about that!), but it's still HOT!!!

    Hibernating until Sept ~ Shar  Cool 

  • topless
    topless Member Posts: 74
    edited July 2012

    Spica - I live in eastern Wyo which does a lot of irrigated farming and that makes our area the most humid of any other in Wyo.  I lived in Michigan for a few years too (Battle Creek) and I know what that kind of humidity is like.  But still like you said, when it's gone over a month of record breaking heat - it's HOT.  We've had West Nile out here for years.  Most of us figure we've been exposed and some of my friends have gotten very sick.  Not a good disease to have either. 

    I'm going to go sit in the river. 

  • maize
    maize Member Posts: 184
    edited July 2012

    I was tested for MS last week.  MRI, etc.  Apparently, they don't think it's MS, but are pretty sure it is rheumatoid arthritis.  I was told that radiation won't have any detrimental effect, and that's that and to stop questioning it and just do it, but somehow I don't feel comforted with the info given.  I am hoping to get another type of radiation treatment, if there is one that is somewhat safer and am waiting for that appointment.  I know the rads are considered essential.  I don't want to aggravate anything and like everyone else who has been diagnosed with bc, I worry about a recurrence every day.

    I am wondering if the Tamoxifen aggravates the symptoms of auto-immune disorders? Rheumatoid arthritis is an auto-immune disorder, as MS is.  There have been patient reports that these anti-estrogen drugs cause joint pains.  I read that some auto-immune disorders do make us more vulnerable to cancers, to some degree, anyway.  They'll probably tell me there are no significant side effects from taking Tamoxifen.  So far I have been told that there should be no problem with it, not even hot flashes.  That's not what people who take it have been saying.  Maybe the drugs offered are prescribed because there aren't really that many to use in their arsenal against breast cancer?  My doc seems to be irritated that I am concerned about the conventional rads and the Tamoxifen, like I should just shut up and get it all done the standard way and not concern myself with the future.  I am hoping this other form of radiation will be at least a little safer or shorter or somehow better--particularly since I have been diagnosed with an auto-immune disease.  They are not sure that it is rheumatoid arthritis yet--it could be possibly be scleroderma or lupus?    I feel I have legitimate reasons for concern about the effects of treatments and would be dumb not to ask questions and to consider the options and to have a really clear undertanding of what options are available.  I think my concern about the type of rads is legit, given that I have this auto-immune disease.  Don't you all think so?  Maybe this doc should just say: "Look, we don't have much available to use for you personally, so you just have to take what we tell you to take."  That is the impression I am getting from this particular doc.   I don't want to be a lab rat, a guinea pig, either, for untested drugs.

     http://www.medhelp.org/posts/Breast-Cancer/Could-Tamoxifen-be-the-cause/show/259675

     Juli50,

    I had trouble with the hot tub, not being able to tolerate being in it for very long at all.  I don't know why because it never bothered me before.

  • Stanzie
    Stanzie Member Posts: 1,971
    edited July 2012

    I'm sure some other women will jump in with more info about rads and tamoxafen - I didn't have either so I can't help you. However you certainly should not put up with Doctor's treating you like this. That is certainly not right. Are you taking someone with you to these apts. If not please do, a lot of times Doctor's will at least be nicer when there are witnesses. Not knowing what you are dealing with is certainly cause for needing answers before you can proceed. Unfortunantly we all learn we have to advocate for ourselves so don't let any one push you into doing something or taking something you are not comfortable with. When will you get results from your tests? Did they do a MRI or Spinal tap for MS? It is still hard to diagnose.

    You don't say whether you have had surgery or not yet. What kind of diagnosis do you have and how much time do you have before making a decision?

  • Stanzie
    Stanzie Member Posts: 1,971
    edited July 2012

    Maize - What is your diagnois you don't say. You also have a lot of posts that include links on a variety of subjects - this seems odd.... Sorry but we all have reasons to be careful on these threads.

Categories