BC & Autoimmune Diseases: How many? What does the research say?
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Hi Everyone - Day #12 / #1 Chemo.
Except for an occasional Diarrhea, (which I prefer over the big C), Calcinosis in fingers getting worse & Severe Mouth sores ----- I'm OK. I swished with baking soda/salt and Biotine, (a dozen times a day from day one) nothing worked, so they called in the "Mary Magic Mouthwash" from CVS (they made it up). Went from feeling like tiny razor blades slit inside my mouth to finally had relief in about 24 hours after the "magic" I had sores on my lips, inside my mouth, it was awful.
Something unusual has happened since starting chemo. I now have Energy. I feel like doing things. This is just weird. Day #12 and I want to go shopping. (i only took the pre-med steroids for the first 3 days) I have done more in the last 7 days than I have in a year. Seriously. I read with interest as well the new study about Auto Immune - It kinda sounds like what Herceptin did for HER2+.
I don't have bone pain, my migraines have eased up a bit, No nausea, No Neurothopy, My port stopped hurting the day they accessed it. I hope this is the norm and not a false sense of security!
Everyone take care.
rj0 -
Hi, rj, I hope things are still going ok. Energy? I assume that has gone by now but you may be lucky. I hate to admit it, but mental outlook has such a huge effect on how we feel. Peace of mind is so important. I finally got my urologist's NP to Rx some Cipro for all the UTI sx I've been having. Two negative cultures (PCP and gyn), then MO admonishing me for "wanting" to have an infection, and I found someone to believe me. Guess what, doctors? You can have a UTI with a negative culture. I know that. My NP knows that. Why don't you? I may be switching MO's soon. Stay tuned. rj, I'm so glad you are doing well. Keep me posted. I'll try not to make it all about me. I went into that story about peace of mind because maybe when you finally decided to do chemo, it calmed you down and you felt better for that, I always do. Just getting past the decision is the hard part for me.
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Hi Jaycee - Yes, I was so afraid of the SE's and my Moron of a MO I had, I was terrified of Chemo. But once I started and (Thank goodness for the Dex Steriods) I felt wonderful for the first 3 days. Dex Is like an illegal drug for me - makes me feel Great! I'm a little tired today, My mouth has healed completely, my Calcium deposits in my fingers are out of control and very painful. And I've lost most of my hair (Day #16) going to see my hairdresser - she said she will shave my head like a smooth baby's butt - I'm Excited! But not today - had to take Marilax and never know when the 'explosion' is going to happen. Constipation is an never ending battle.
And no more HOT FLASHES!
That's crazy about UTI's. They take up a mind of their own. My elderly parents had them - and I could tell with Dad, he would get real goofy. Mom wouldn't have any symptoms but get dizzy and fall. They are nothing to fool around with. The ER RN said they mimick heart attacks and all kinds of things.
Hi Bluebird - My Rhuematologist has no idea what to do with me. I have overlapping Dermatomycitis and Scleraderma/Raynaulds and Fibromyalgia. Mix connective tissue. She had mentioned years ago before DX of Cancer, that I might have to take Chemo. Huh. I used to take Methotrexate, which did nothing. I did have IVIG Infusions for about 6 months back in 2012, which really helped me.
Take care everyone! rj
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Hey All, Just checking in Day 19/ Round #2
Tired beyond belief. Gums are white. Can't wait to see what my WBC counts are on Tuesday for Round#3
I have to bandage all my fingers due to calcium deposits - out of control. Left hip bone pain - this is new. But I 'think' I have the Big D/ Big C figured out - I take Maralax every other day. Timing is everything.
round #2 is so diff for me than round 1 of chemo. I havn't had a good day on this round. 3 of 6 to go.How are you Jaycee...marijen...Bluebird...mybe333...Robinblessed...
couragement - so far no sign of Shingles - just that little scare a few months ago.
Everyone take care -
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Well of course I can't find it !! LOL
Here's the one of a child w high RNP and cancer was discovered. https://pdfs.semanticscholar.org/865b/2595b6d836b3...
I also printed the one of woman w breasst cancer and high RNPs and did not bookmark the page. But when I find it I will post the link.... someday.
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Wondering if posters on this thread are aware of up and coming proposed changes to BC.org site. Here's a link if you want to inform yourself.
Are You Aware of/Concerned about proposed BCO thread changes?
GP
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Aromatase inhibitors induced autoimmune disorders in patients with breast cancer: A review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC53280...0 -
Researchers discover link between rheumatoid arthritis and bacteria in milk
https://www.news-medical.net/news/20180130/Researc...
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Hi,
My stage 3A diagnosis was July 2013. I was diagnosed with ankylosing spondylitis this past November. I believe it most likely started well before the BC diagnosis. I had regular back pain that I would always attribute to something I had been doing at the time. At my BC diagnosis I was having a lot of back pain and was sure I had Mets. All the scans said no Mets but that I had a really “bad back”.
Over the past year things worsened and I attributed my new symptoms (aching joints, swollen fingers etc) to the AI inhibitor and menopause. In Sep I developed intense ankle and heel pain and my oncologist referred me to a rheumatologist. Voila...diagnosis made.
I have been trying Methotrexate for the past several months with mediocre results and some rough side effects. My rheum wants to move me to an anti TNF (most likely etanercept). I have been researching etc but am getting mixed thoughts on the safety re: cancer recurrence. My onc has approved but will follow me “more closely”
Would love to hear any thoughts. Is anyone else taking an anti TNF? Chronic inflammation can’t be good either. Which is worse?
Thx
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Here is a question; I have been diagnosed with Monoclonal Gammopathy of undertermined significance, MGUS. There is 1% chance of it turning into Multiple Myeloma, blood plasma cancer. No symptoms and no treatment, just watch and wait. Anyone else have this?
Robin
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Hi, Robin! Glad it's only 1% chance and there are no symptoms. And you have introduced me to my new favorite acronym, MGUS. I especially like the "undetermined significance" part. I don't have it and don't know anyone who does. Maybe someone will show up. Just what you need. Another thing to worry about. I'll be Googling.
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Hi! I found a topic on BCO where other BC survivors either have MGUS before their BC or after! I believe there is a connection between BC, autoimmune and MGUS. So we just muddle along with yet another malady to either worry about or not. It is amazing how having a blood test to check for Celiac decease from my GI doctor turned up an IgA deficiency which led to more tests by my MO which led to a bone marrow biopsy and then, voila! MGUS! And may I add that the bone marrow biopsy was the most horrible procedure I have ever been through. Most MGUS diagnosis are found by accident.
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I've never heard anything but horrendous about bone marrow biopsies. Sorry you had to go through that. What bothers me is that they don't tell you that it hurts that much. Why they do that, I don't know. Do they think we are that crazy that just telling us it will hurt will make it hurt? I'd like to know beforehand. They did that with my thorasenteses. All six of them. Only the last one didn't hurt (much) because the guy actually knew what he was doing. And why not general anesthesia? Or something better than what they use? This makes me so angry. Can you tell?
I've found a few new vaginal moisturizers like Premeno Duo (VERY expensive), Ladybits Jelly (moderately expensive) and Key-E (way cheaper). I've used one of them EVERY night since mid December when I had a slew of UTI's. I seem a lot better but I'm giving it four months, the time it took for Vagifem to work. We'll see. Hope you are doing ok in that arena. Seeing my new (yes, NEW) MO today. Looking forward to not being verbally abused.
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Wow Janet, no medical professional should EVER be abusive! That is the way my first MO was and I got the heck out of his office fast and to my current MO just as fast! I absolutely LOVE her. And the bonus is she is also a hematologist! That is just what I need for MGUS. She got on that right away and I think I am fortunate that she knew what to look for. My Aloe Cadabra is still working like a charm. That didn't work for you? But glad you have found something that might.
Did you do some Googleing on MGUS? It is very complicated because there are so many variables that one person might show one thing and then the other one is totally different. I did find some other thread that has some ladies that have both too. I really believe that autoimmune, MGUS and BC are connected. Since MGUS is your immune system, then auto immune deceases must come into play somehow.
Do you ever think that since our bodies already know how to reproduce cancer cells, that maybe that 1% could be higher for us? Just saying. I know she will watch me carefully doing blood tests every 6 months for now. Another interesting think is that my CA 15-3 went from 21.0 to 21.6 in 4 months. It was 16 about a year ago. Why is it going up? I know it is okay until it goes over 31.0 but it makes me wonder what else is going on? Take care all and hopefully our bodies will stop attacking us.
Robin
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I am wondering if anyone with autoimmune disease, Hashimoto especially, has noticed an improvement in symptoms after breast cancer treatment.
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I have had Hashimotos for over 20 years and have been on medication the entire time. It is under control. So I haven’t noticed any difference in how I feel. Maybe someone else has an opinion .
Robin
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my ra was pain free during ac chemo now I’m almost done with taxol and joint pain is returning. Anyone else get joint pain back during xhemo
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Hi Everyone,
I'm finished with Chemo, it's been rough. NO ENERGY. Still have severe bone pain (hip/thigh/calf left side) having Herceptin every 3 weeks for the next 7-8 months. Can't get out of bed. No motivation. My MO said to try Ritalin - for energy but my INS won't pay for it.
No mention of taking anti Hormon pills or Radiation from MO. I'm not bringing it up. There is no way I could have the energy to go to radiation daily. I can barely make my twice a week chiro appts for my hip/legs. I usually end up cancelling - just too tired to get out of bed. Too dangerous to drive. MO says my Labs are OK, that I'm not anemic. Just too tired to get on line...
Hope everyone is getting better. take care, rj
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Rljes, so sorry you feel so miserable. At least it is over.
Is there any way you could afford your ritalin cash pay for a two week trial to see if it works to get some energy, e.g., credit card, family, foregoing something else?
Rest up and hopefully you will spring back a bit. May I ask approximately how old you are, and what kind od underlying autoimmune problem you suffered from pre-treatment? Ok not to answer if I am too nosey.
Best,
C
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Don't know if I already answered. Prior to BC, I already had Rheumatoid Arthritis. Dx'd at age 22 while in the Army. Blessedly, it was in remission until the BC journey started. Between all the surgeries I had and the Tamoxifen and then AI's, it came back out with a vengence and has stayed despite no longer being under treatment. Chief of Rheumatology at the VA I go to said it was from the AI's while Onoclogy said it wasn't. Pffft Of course it was from the meds.
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I'm sorry to hear that. Yes, I do believe, unfortunately, that tamoxifen/AI's can do things that they either don't recognize or don't want to tell us. My fibromyalgia flared with these meds and has never settled back down. I also have a whole host of other difficulties that no one in my family has or has to the extent that I do. I had seven surgeries in two years related to my breast cancer, but still felt okay and had energy. But after the anti-hormonals I felt fatigued and have never returned to my former self. I won't go into all that I have now - it's a little much. I am seven years out now and have adjusted to these complications and just the health issues in general. Good luck with your RA. I have a friend who found that CBD oil and edibles helped her more than anything. I also think she just did not want to get dependent upon pain medication. But she did tell me that CBD was more effective than anything else she tried. I am considering using itfor chronic pain myself.
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hello Galsal, looks like you and I tried all three AIs. Arimedex and aromasin practically killed me! It created so much joint pain, arthritis and trigger finger that I felt 90 years old when I got up to walk. I cried and told myself if this is how I felt I would stop any med because I couldn’t live like that. Femara was my saving grace. No joint/muscle pain at all. I do have arthritis in my hip and had to have trigger finger surgery. But can live my life feeling 64, not 90! Femara gas given me about 10 pounds that won’t go away, and dry everything! But I can live with that.
I have Hashimotos, IgA deficiency and Monoclonal Gammopathy of Undertermined Significance(MGUS) the precursor to multiple myeloma. I have had 6 basil cell cancers removed too. I have 2 older sisters, 68 and 72, who don’t take any rx meds!! I got the end of the gene pool!
Robin
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rljes, it is WAY too soon to expect to feel better after chemo. It takes months (my gyn said a year) to start to recover from chemo. It is a long process but you get things back one by one. I only did two rounds of what you did and it still took several months. I remember realizing when I could taste again. That was big. Enjoying food. And remember, your MO will not understand at all or help at all. Don't expect that. Just go through the motions when going to him/her (like they do). The Herceptin should not make anything worse, at least it didn't for me.
It's always amazing to me when someone makes it through that mess. No one around you knows how difficult it is. Just you. Give yourself the credit you deserve. Pride is an understatement.
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Hi Everyone,
Thx Janet (Jaycee49) for the kind words of encouragement. My MO is an *ss. However my Auto Immune disease (Dermatomyositis ) is in full flare up mode. I am worried sick about no mention of Anti Hormone pills and radiation. But I'm afraid to bring it up. I feel Like I'm falling thru the cracks as usual. I just don't have the the strength to bring it up, because afraid of the answers. I'm done.
Chronicpain - sorry I didn't get back with you, your not being nosey. I just havn't had the energy or motivation to be on line. I was diagnosed with Dermatomyositis, Scleraderma, Fibromyalgia, and chronic migraines diagnosed in 2010. I'll be 60 in July. Had to go on disability after dx. I finally got a generic type of Ritalin, and no help either. Just gave me a headache and made my heart beat crazy. I have a strange metabolism.
Mybee333 - I tried CBD oil - 3 diff kinds and nothing, Although Pot helps. (not legal here)
take care -
rj
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Just an update on my auto immune disease - I had to call 911 - UTI/Septis and Dbl pneumonia. spent 8 days in the hospital. just got home a few weeks ago. Lucky to be alive. was concentrating on the cancer part too much and kinda forgot what damage my other auto immune diseases can do. I partly blame my doctors - they should have been monitoring. I begged for help and they kept brushing me off. I need better doctors.
take care all - rj0 -
Hi all. I just found this thread. I have not read all the posts yet.
I just wanted to chime in. I have Rheumatoid Arthritis and Sjogrens Syndrome- both autoimmune disorders. I was diagnosed with those in 2014 and then diagnosed in 2017 with Stage 4 MBC de novo.
Wondered about the correlation between cancer and autoimmune diseases before. Never really had a doc explain. I even saw a genetic doc once for a consultation--wish I could have continued seeing him to pick his brain.
I will catch up on reading previous posts and looking forward to conversation on this thread.
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I read somewhere long ago that autoimmune disease raisesyour chance of cancers later in life. Forgot where I read it.
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I think the cancer risk is higher because of the immunosuppressive drugs we have to take for decades. (I've had lupus for over 30 years and have taken A LOT of immunosuppressives!)
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Autoimmune diseases are caused by abnormal cells, including malignant ones, that produce slightly different proteins. The body recognizes these proteins as abnormal and attacks tissue that produces similar proteins. Having an autoimmune disease increases one's risk of cancer because the autoimmune diseases was triggered by the cancer cells, or pre-cancerous cells that later mutated into cancer. Autoimmune disease can be cured by successful cancer treatment or removal of the mutant cells.
For instance, breast cells produce TPO. Cancerous breast cells produce TPO isomers. If the immune system recognizes and flag the TPO isomer, will lunch an attack against cells producing TPO, which are primarily located in the thyroid. So breast abnormalities can caused autoimmune thyroiditis.
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Makes sense. I took prednisone for 10 years for lupus, then my lupus was in remission for about 30 years, during that time I took no drugs. Then After 30 years of remission I had a mild flare up. Because I was out of the country, I was not treated by my regular doc and was prescribed prednisone. Took it for a year, returned to the US, my doc told me to stop it immediately! 4 years after that I was diagnosed with BC. I am BRCA2+ and always wondered if that year of taking prednisone along with other things (switching to sedentary lifestyle after many years of regular exercise, eating more dairy, meat, sugar and breadthan previously and depression after the loss of my mother and my job)triggered the disease...
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