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Topic: Multiple Sclerosis and Breast Cancer

Forum: Breast Cancer with Another Diagnosis or Comorbidity — Meet others who have breast cancer but also have another health diagnosis/comorbidity such as diabetes, MS, bipolar disorder, HIV or AIDS, Parkinson's Disorder, schizophrenia, etc.

Posted on: Jan 24, 2009 01:33PM

wackyjackie wrote:

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

Dx 5/25/2007, IDC, 3cm, Stage IIB, 3/13 nodes, ER+/PR+, HER2-
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Mar 14, 2019 06:21PM Irishlove wrote:

Hi folks. I know this is a quiet forum but I need to post so rather, great, but odd news. I had been staged 1A, IDC, with biopsy. After a MRI of two more troubling areas, we went from lumpectomy to mastectomy. Today I saw the surgeon and I was restaged. I've never been so happy in my life to say "I've been downgraded"! I have a papillary carcinoma that was encapsulated. It has been restaged to Stage 0. Other troubling areas, were b9. Now on one hand had I known this a head of time, maybe we could have just done the lumpectomy. On the other hand, I may have lost my breast but no more uprisings and no need at this point to remove the other breast. Guess I'm a rare breed as they said it's not really in- situ, but it is treated and staged as such. Number one question on my mind, did MS, an overactive immune system, send troops to circle this cancer and encapsulate it to keep it from becoming invasive? Or did the chemo, Mitoxantrone, that I took for MS back in 2005-2008, make the difference? God blessed me today beyond measure. I pray for every community member and their families to find healing measures and faith in a better day.

Surgery 2/27/2019 Lymph node removal: Sentinel; Mastectomy: Left Dx 3/14/2019, DCIS/IDC: Papillary, Left, 1cm, Stage 0, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 5/7/2019 Prophylactic mastectomy: Right
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Apr 27, 2019 10:48PM Irishlove wrote:

Hi everyone. I know it's rather quiet here but thought I'd give it a try. I have MS for 18 yrs. Fairly stable recently until this flare due to bc diagnosis and mastectomy. It's 8 weeks since surgery and I have had major problems with bowels. I had to head to er and was diagnosed with fecal impact. I'm still struggling with disrupted signal and today I found blood in my stool. I do suffer from hemerroids and have for years, but this is in the stool, not just on the tissue.

Anyone have problems after surgery and this corrected itself, as it's possible I'm straining so much, plus having to use enemas nonstop or milk of magnesia. I read Dr. Chey's post on constipation and I like the kiwi idea. I'm due for colonoscopy in Sept. but was hoping to hold off until I have the prophylactic mastectomy May 7. I did mention this problem to GP and to Breast surgeon. GP recommended colon guard check and surgeon recommended senecot. I am hoping to avoid another doctor to this mix, but the blood sure scared me (not black but certainly red). I have added beets and curcumin to my diet and that made me wonder if that's the source.

Surgery 2/27/2019 Lymph node removal: Sentinel; Mastectomy: Left Dx 3/14/2019, DCIS/IDC: Papillary, Left, 1cm, Stage 0, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 5/7/2019 Prophylactic mastectomy: Right
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Jul 2, 2019 03:26AM forza wrote:

Hi all ,

I've not read all the posts yet and this is my first. Just to say : having 1 crappy disease would be enough for 1 person I would have thought !!! But it appears we do exist.

I was dx with RRMS in 2002 and last month (2019) with metastatic breast cancer de novo ? I know nothing about breast cancer yet but I'm a pro about MS. I haven't been on any ms treatments for years but on Kisqali and Letrozole now for the cancer.

It all seriously confuses me. The doctors find me a difficult patient. It's hard to know if symptoms are caused by ms , cancer or drug side effects !! So questions like : do your bones hurt or do your feet tingle ? Well yes , but they always do. Confusing.

love and light x

De Novo aged 46 Dx 6/2019, IDC, Left, 3cm, Stage IV, metastasized to bone, ER+/PR+, HER2- Targeted Therapy Kisqali Hormonal Therapy Femara (letrozole), Zoladex (goserelin)
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Jul 26, 2019 12:15AM Irishlove wrote:

Hi forza, I'm so sorry for your cancer diagnosis after dealing with MS for years. I was diagnosed with RRMS in 2001 and BC Feb. 2019. I take LDN for MS, an off label drug that helps tremendously with typical MS stuff. It's not 100% effective, but does help greatly. One thing I've learned thru this process is never to blame it all on MS. It's so difficult to sort it all out. I just went thru this with major bowel issues after last mastectomy. I pushed for a colonoscopy and all that was found was one polyp (precancerous). The rest of the issues were an ongoing flare from MS. It's starting to clear up. Today I saw a thoracic doc, thinking this lump in my neck was lymph node problems. It's not, it's believed to be a carotid artery aneurisym. I'm waiting on a CT scan for plan of action. The nurse asked me so many questions about symptoms and all I could say was could be MS or could be related to an aneurisym.

I hope you can get some support from the Stage IV forum as this thread is not very active lately. Wishing you the best under such difficult medical issues.

Surgery 2/27/2019 Lymph node removal: Sentinel; Mastectomy: Left Dx 3/14/2019, DCIS/IDC: Papillary, Left, 1cm, Stage 0, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 5/7/2019 Prophylactic mastectomy: Right
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Jul 27, 2019 09:58AM forza wrote:

Hi Irishlove , thanks for replying

I DO blame everything on ms , so did any doctor I've ever seen , and it's a habit hard to break.

Now being under oncology , they blame literally everything on cancer .....

I do feel like a double fraud : I can still walk and I have boobs and long hair :/ So still never get a sympathy vote anywhere

The 1 thing that upsets me is that I can't take Modafinil (for ms fatigue) with Kisqali (something or other for cancer). So fatigue hitting me harder now because I know I have pils that could fix that :( Not fair

De Novo aged 46 Dx 6/2019, IDC, Left, 3cm, Stage IV, metastasized to bone, ER+/PR+, HER2- Targeted Therapy Kisqali Hormonal Therapy Femara (letrozole), Zoladex (goserelin)
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Jul 27, 2019 11:30PM Irishlove wrote:

Forza, can you take provigil? I did years back, but since I'm home on disability I stopped the meds. I just crawl into bed when the fatigue overwhelms me.

Surgery 2/27/2019 Lymph node removal: Sentinel; Mastectomy: Left Dx 3/14/2019, DCIS/IDC: Papillary, Left, 1cm, Stage 0, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 5/7/2019 Prophylactic mastectomy: Right
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Aug 3, 2019 12:30PM forza wrote:

provigil = generic modafinil

It's a wonder drug , soooo not fair !

Bawling



De Novo aged 46 Dx 6/2019, IDC, Left, 3cm, Stage IV, metastasized to bone, ER+/PR+, HER2- Targeted Therapy Kisqali Hormonal Therapy Femara (letrozole), Zoladex (goserelin)
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Aug 23, 2019 09:37AM - edited Aug 23, 2019 11:11AM by jaycee49

Thank you, Irishlove. Because I ran into you on the autoimmune thread, I found this one. I was dx with MS in 1990. Stage II BC in 2014. Stage IV BC in 2016. I don't have the time or inclination to read the whole thread but read a page at the beginning and this new stuff. Wow. I was blown away by Irish's post about encapsulation. I had a "scare" in 2013, a year before my real BC dx. There was a suspicious area in my left breast on mammo and it was biopsied. Not cancer. My BS, who did the biopsy, said something about an MS connection. I didn't really pay much attention because NOT CANCER was all I heard. Then a year later, a lump at the EXACT SAME LOCATION was biopsied and was cancer. I think the biopsy in 2013 let the cancer out. Just crazy talk, right? But it seems so logical to me. I might be able to get the 2013 report but I haven't been able to get up the motivation. And what good would it do, anyway? I am really curious, though.

I am in the same position as you guys. When you have some symptom, is it MS, cancer, or meds? Who knows? I just try to stay feeling ok and sane. Not that easy with the medical establishment messing with us all the time. I've been lucky, though. I have not been financially ruined by my medical issues when so many are.

Janet (dx with MS at 41, slows me down some) Dx 4/25/2014, IDC, 3cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2+ Surgery 6/5/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Targeted Therapy 8/5/2014 Herceptin (trastuzumab) Chemotherapy 8/5/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 10/1/2014 Chest wall Hormonal Therapy 2/15/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/25/2016, IDC, Left, Stage IV, metastasized to bone/lungs, Grade 2, 1/18 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 4/1/2016 Femara (letrozole) Targeted Therapy 4/1/2016 Ibrance (palbociclib)
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Sep 15, 2019 03:49PM AnnaDT wrote:

I am BRCA 1+ and had ovarian cancer and then was diagnosed with MS. After my oncologist told me about difficulties of treating BC with MS too I had a double mastectomy and am now having reconstruction with saline implants

I was frustrated with the lack of available information about silicone implants (and effects of potential leaks) on aggravating my MS

There is too much compartmentilizing between specialists.

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Sep 15, 2019 03:53PM AnnaDT wrote:

do not blame yourself! The emotional and mental health impact of these diseases is huge and under appreciated. I think that adds to my fatigue.

So try to be kinder to yourself~you are doing the best you can!


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Nov 24, 2019 01:37PM forza wrote:

just been seeing (and reading up on) some ms warriors doing really well after stem cell therapy . Sigh , would have totally gone for that now if not for this stage 4 crap. It does require heavy chemo though , the irony didn’t escape me ^^

6 months in , still not figured out where my 20 years with MS fits into this picture and yes !!!! Anna , specialists do compartmentalise to the extreme. I keep telling them : it’s one and the same body !

Bone scan tomorrow , not in the best of moods 😞


De Novo aged 46 Dx 6/2019, IDC, Left, 3cm, Stage IV, metastasized to bone, ER+/PR+, HER2- Targeted Therapy Kisqali Hormonal Therapy Femara (letrozole), Zoladex (goserelin)
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May 16, 2020 03:40PM Al73 wrote:

I am so glad I found this forum. I have MS for 10 years and was recently diagnosed with stage 2 breast cancer. I’ve got a handle on managing MS but now to manage breast cancer too is bit overwhelming. I’m starting chemo on Monday any ad

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Sep 15, 2020 03:37PM forza wrote:

keeping this thread alive !


De Novo aged 46 Dx 6/2019, IDC, Left, 3cm, Stage IV, metastasized to bone, ER+/PR+, HER2- Targeted Therapy Kisqali Hormonal Therapy Femara (letrozole), Zoladex (goserelin)
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Dec 13, 2020 06:23PM Honeybee68 wrote:

Hi all,

It is so nice to find some other people dealing with MS and BC. I was diagnosed with MS in 2000 and with de novo stage IV BC in 2018. I haven't been on any MS meds since my BC diagnosis. Prior to that, I was on Copaxone, then Avonex, then Rebif and finally Aubagio. I went off MS meds when I got the BC diagnosis. I have since finished chemo, surgery, and radiation and a recent brain MRI shows new lesions. So, I am trying to figure out what, if any, MS meds I should take.

They also aren't sure if the new lesions are MS or brain mets from the BC. Have you encountered that issue? How do they tell the difference? Are you on any MS meds? If so, which one?

My neurologist and oncologist don't seem to know what to do with me. They each want to stay in their lane. I guess it is hard to know what to do with people like us.

Melissa

Dx age 49, 06/06/18, stage IV DCIS and IDC, ER-, PR-, HER2+, 2 liver mets, 07/20/2018, Taxol weekly 4 mos, Herceptin & Perjeta indefinitely. Two site lumpectomy and lymph node biopsy, 0/6 nodes 04/15/19. Whole breast radiation starting 05/13/19.
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Dec 31, 2020 11:02PM Irishlove wrote:

Hi Honeybee,

19 plus years of MS, 1 1/2 yrs. post breast cancer diagnosis. I had been on copaxone and mitoxantrone and then on to LDN (low dose naltroxone). The mitoxantrone got me stabilized, but since it was a chemo drug, carried side effects. I went on LDN and have had excellent results for over 10 yrs now. You can not drink or take certain pain meds while on this drug, but for me that was an easy choice.

Good luck and by all means check into LDN.

Irishlove

Surgery 2/27/2019 Lymph node removal: Sentinel; Mastectomy: Left Dx 3/14/2019, DCIS/IDC: Papillary, Left, 1cm, Stage 0, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 5/7/2019 Prophylactic mastectomy: Right

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