Jul 26, 2017 06:50PM robinblessed54 wrote:
jaycee, you will love the Aloe Cadabra and so will your DH!! Pull the trigger. Let me know.
All Topics → Forum: Breast Cancer with Another Diagnosis or Comorbidity → Topic: BC & Autoimmune Diseases: How many? What does the research say?
Posted on: Sep 19, 2015 11:57PM
A 7-year BC survivor, I've developed an autoimmune disease that so far has not been clearly diagnosed: different docs say different things: Rheumatic arthritis; psoriatric arthritis, testing positive for lupus without the typical symptoms ... My symptoms are a progressive eczema on my hands: skin thickening, itchy then peeling. Swollen & red knuckles, intermittently similar symptoms on my other joints.
My doctors are mostly useless - thus far. Onc / BS not interested: see someone else: PCP or dermatologist or rheumatologist or ...
PCP is helpless and big eyed: see dermatologist.
Dermatologist has now for 2 years tried every cortisone ointment to no avail and has no other suggestions.
My suggestion that this is systemic and perhaps related to the BC, and the two skin cancers (SCC & melanoma) I developed since then is pooh-pooed. Each is an isolated incidence they say.
I don't believe it.
4 questions (perhaps we can have a survey of sorts):
1. How many of you do have both: BC and an autoimmune disease? What kind of autoimmune disease? Which came first BC or AD?
2. Do you know of any good research on the topic?
3. What steps or tests to take?
4. Do you have a recommendation for a good doctor in Southern California to address this issue?
Posts 91 - 120 (174 total)
Jul 26, 2017 06:50PM robinblessed54 wrote:
jaycee, you will love the Aloe Cadabra and so will your DH!! Pull the trigger. Let me know.
Jul 27, 2017 12:10PM jaycee49 wrote:
Robin, the trigger has been pulled. DH put it an order he was doing anyway. I wasn't going to tell him about it to not get his hopes up. This may not work, as nothing else has. I started with atrophic vaginitis right after menopause started, maybe 15 years ago. I'm 68. I assume you are younger. Almost everyone is. Then we had the old "use it or lose it problem." It just kept getting worse through non-use. Then, cancer. And MS (which came first). Lots of UTIs which became even more common after mastectomy. Then Tamoxifen. Non-stop UTIs for over a year. Then non-stop yeast from all the antibiotics. I'm struggling with yeast right now. The only thing that works for me is to stop eating sugar. It takes months. I'm wondering about how and how much Aloe you use. You said right after shower but doesn't it run out or disappear somehow? I guess disappearing would be good. Absorbed? I assume you put it in by hand? Amazon showed me some applicators, like they show you everything related to what you are buying. Would using an applicator get some more deeply in? I may need that. My tissue is dried out deep into my body, all around that area. This was supposed to be short. I could have sent you a PM but maybe someone else has this issue. Might as well get it out there.
Thank you, thank you, thank you, Robin.
Jul 27, 2017 12:34PM robinblessed54 wrote:
jaycee, I am 63, so not young! I have a question for you, why were you on Tamoxifen if you were post-menopausal? I noticed you are now on Femara, which is what I take. It is very drying, but works the best for me. If you look at my profile, I took every single one of those AI's until I found Femara worked for me with very few side effects.
No applicator needed. I put a pea size in everyday just using my finger. It is a thick gel like consistency. You might have a bit outside of the entrance, but that pretty much stays put around the outside tissue. You might want to add more, just play around with it and see how it works.
You can PM me anytime. :)
Jul 27, 2017 04:06PM - edited Jul 27, 2017 04:20PM by jaycee49
Since I quit regular chemo after two rounds due to side effects (they were all gastrointestinal), my MO was intent on the hormonal with the least side effects. He gave me the list of the 3 AIs and Tamox and said, "pick one." I was leaning toward T because I already have osteoporosis and he liked that. I guess he thinks T has fewer SE. I knew it was not supposed to be for post menopausal women. MO said they all really do the same thing. I was already having lots of UTIs and the T just exacerbated that. I quit the T but I wish I had switched to an AI. MO never believed me that the T ramped up the UTIs. He is wrong, of course. I just posted my whole cancer story on a thread in the stage IV section called "tell us your stage IV story." It is really long so you might not want to read that. I did see that you have been on all three AIs. I actually chose Arimidex as my AI to go with Ibrance but my Medicare drug insurance would not cover Ibrance unless I took the drug used in the clinical trial, Letrozole. Ibrance has to be covered by insurance because it costs more than $10,000 for a 21 day cycle. That's ONE month. I have to get funding from a grant to pay the copay which is $563 a month. Guess where the private foundations get their money to assist patients who can't afford their drugs. The drug companies. Huge tax breaks and helps their image. Sick.
Aug 27, 2017 02:49PM robinblessed54 wrote:
I went to my MO appointment on 24th. Hadn't seen her since my IGA deficiency diagnosis. My creatinine levels rose a bit so she is checking for multiple myeloma. 😩 The first blood test came back within levels. There are still 3 more tests we are waiting on. I wonder if this IGA thing has anything to do with my body not being able to fight off cancer??
Aug 27, 2017 06:04PM jaycee49 wrote:
Marijen, That's exactly what I asked my MO at our discussion of this tx. He said until the side effects get to be unacceptable. Like low white counts, etc. I would also stop when scans showed progression. Then on to the next thing. I would refuse any traditional chemo as that is not living. Survival is not survival if quality of life makes you wish you were dead.
Robin, The yeast I thought I was dealing with may not be yeast at all. I finally got my gyn to do a culture to see what variety of yeast I had. It came back positive for two very nasty sounding bacteria. The results were posted online Friday AM. Did I hear back from anyone on Friday or over the weekend? Nope. Maybe tomorrow. I posted to my gyn's portal today that I needed to hear from them. An infection can become rampant very quickly in someone with very low white counts. I guess I could have called my MO's 24/7 hotline but it was not their problem. I sound like I'm in a bad mood but I'm not. DS and his wife moved into their new townhouse this weekend and we are all thrilled. They even ask our advice about house stuff. Finally, at 32, they think we have half a brain.
Aug 28, 2017 10:16AM jaycee49 wrote:
marijen, I don't pay the $563. That comes from a grant from the "charitable" foundations. Pfizer, the drug company that makes Ibrance, funds the foundations. They want patients to have the drug and they certainly don't want an Epipen situation. The only stressful time is when a grant runs out, I have to find another one. And you can't apply for a grant until you are TOTALLY out of money. I am on my second one now and it will run out in October.
Gyn office just called. She will be in surgery until 2:30 PM. Then she will deal with my (positive) culture. I've decided we have access to medical providers about half the time. Weekends are out and Mondays and Fridays are iffy.
Sep 1, 2017 10:30PM robinblessed54 wrote:
Has anyone had a bone marrow biopsy looking for multiple myeloma? With the IGA deficiency, my MO took further blood tests for protein levels. She called me and said she wanted a biopsy. She said that this is the only way to find out why. I am very anxious about the test. I emailed her to see if she would give me my numbers. I also want to see if I might have twilight sleep for the procedure. Any input is welcome. Thanks, Robin
Csncer, the gift that keeps on giving!
Sep 11, 2017 01:43PM marijen wrote:
Autoimmune disorders can be difficult to recognize and diagnose. Autoimmune disorders affecting multiple organs can lead to highly variable signs and symptoms that can change in severity over time. Vague and slow to develop signs and symptoms may be present and can be misleading during diagnosis. Some of the more common symptoms of autoimmune disorders include fatigue, general feeling of being unwell (malaise), dizziness, joint pain, rash, and low grade fever.
Laboratory tests performed to diagnose autoimmune disorders depend on the particular disorder the health practitioner suspects a person has but usually include blood tests for one or more autoantibodies as well as tests for inflammation such as CRP and ESR.
Sep 11, 2017 01:45PM marijen wrote:
Examples of autoimmune disorders
For a more complete list, visit the Patient Information page of the American Autoimmune Related Diseases Association, Inc.
Below we provide links to resources with information on the following autoimmune disorders.
In some cases, a person may have more than one autoimmune disease. For example, individuals with Addison disease often have type 1 diabetes, while those with sclerosing cholangitis often have ulcerative colitis.
Sep 11, 2017 03:00PM marijen wrote:
found at thyroid-info.com
Mary Shomon: You are a proponent of natural hormones for some autoimmune disease and arthritis symptoms. Can you tell us a bit about how you would recommend patients get tested for hormonal deficiencies, and if deficiencies are found, what sorts of hormones you've found most helpful for these types of symptoms? .
David Brownstein, M.D.: Balancing the hormonal system is absolutely necessary for the immune system to function properly, as well as necessary for the individual to achieve their optimum health. I believe we should use hormones that are as closely related to the body's own hormones. Natural hormones, those that mimic our own hormones in structure, are preferred over synthetic versions of hormones. Examples of natural hormones include, natural progesterone, natural testosterone, melatonin, human growth hormone, DHEA, pregnenolone and others. I cover each of these hormones in my book. I test patients via serum (blood) testing and use different forms of natural hormones for the individual. Again, not one size fits all. This therapy needs to be individualized for the best results. I also believe the entire hormonal system needs to be balanced. Therefore, I will often use combinations of hormones instead of using the hormones individually. This is a much more effective treatment plan and allows the use of much smaller doses of the hormones. I include much more information about the use of natural hormones in my book, The Miracle of Natural Hormones, 2nd Edition.
Sep 11, 2017 09:28PM Shellsatthebeach wrote:
I had Graves Disease when I was younger. The Graves went into remission after my last pregnancy. I now developed Hashimoto's disease. This was diagnosed prior to me having BC.
Sep 11, 2017 09:34PM marijen wrote:
I have Hashimoto's too and two nodules not big enough to biopsy yet. It never ends. Hypo thyroid cause joint and muscle paine. AI cause joint and muscle pain. And age causes joint and muscle pain. I am on a mission to stop the pain! But I won't take anti-depressants with a bundle of side effects or nsaids. Even exercise is causing pain
Sep 12, 2017 08:00AM dtad wrote:
I totally agree with Dr. Brownstein. IMO balancing hormones is more important than having no estrogen for autoimmune disease and hormone positive BC. Remember those of us that have been diagnosed with hormone positive BC have an excess of estrogen. This is a very interesting subject. Good luck to all...
Sep 14, 2017 05:59PM marijen wrote:
Excellent fairly new article, please read
Aromatase inhibitors induced autoimmune disorders in patients with breast cancer: A review - ScienceDirect
Sep 14, 2017 06:23PM mybee333 wrote:
While that link didn't work for me, this one hopefully will; I wish I was a scientist: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5328027/#!po=7.89474
Sep 14, 2017 06:44PM mybee333 wrote:
Was just going through some of these posts...I'm going to go back to an earlier topic. I'm almost 60 and am having a multitude of symptoms related to post-menopause, aging and I think having been on the AI's/T for 3 yrs. Seems like I was doing pretty well despite eight surgeries in two years until I started with those medications. But I digress.
I was getting repeated and near constant UTIs/vaginal infections for well over a year. I was on antibiotics almost constantly and sometimes these infections were difficult to diagnose, specifically. But tests would come up positive. I felt I was on a merry-go-round. I began to use a long-lasting vaginal moisturizer by Replens. You use it every three days. As I'm relatively dry these days, I wondered if perhaps bacteria just kept building up so decided to try this. Now that I have started to use that product consistently, my vaginal infections and UTIs have stopped. I have been clear for probably at least four months. I also have Vulvodynia, which is painful but I continue to just try to keep bacterial counts down by using wipes, washcloths and moisturizers; if I forget to use the longlasting moisturizer the pain increases. By the way - my OB/GYN was no help with this even though he's nice :/
On a different note I have a new issue. I have developed a round flat rough patch on the side of my cheek about the size of a dime. It itches sometimes and hurts. I can't get into the dermatologist for a week but from researching on the Internet I'm concerned and hoping it's not pre-cancerous. There's another spot close by which is very small but similar. Yikes!
Sep 15, 2017 10:11AM jaycee49 wrote:
mybee, Replens works fine but I can't use it because it contains glycerin which is basically sugar. If you are prone to yeast infections, which I am, you can't use a product with glycerin.
Sep 15, 2017 11:35PM - edited Sep 15, 2017 11:36PM by Lita19901
I've had an annoying but not problematic peripheral neuropathy of the lower legs and feet for a few years. I honestly don't remember when it started, but I wasn't concerned because my mother also had this and it never was that much of a problem. I've also had carpal tunnel since my pregnancy 30+ years ago that again hasn't caused me any problems to speak of.
Shoot forward to June 2017 and I was diagnosed with BC via mammogram and have had a lumpectomy and will need radiation. The typical treatment plan for my type of early stage BC (HER2+) is "chemo-lite", Herceptin and AI's, as I am post-menopausal.
In educating myself on BC I learned that many chemotherapy drugs actually cause peripheral neuropathy and so I (finally) saw a neurologist this week who said, yep, I have PN and yep, my mother probably gifted me with it. But to rule out other causes he ran some blood work and I came up positive with antibodies that are associated with autoimmune disorders, specifically the ANA and Sjogren's SS-A antibodies. I'm also somewhat B12-deficient.
Other than the PN I don't really have any other symptoms of an autoimmune disease, or at least not yet. I'll be 66 next month and have no problems with fatigue, dry mouth/eyes, joint pain, or other physical problems.
I'm not crazy about the side effects of BC treatment on my daily life. I make dolls and find great happiness in this and we also have several large perennial gardens that take quite a bit of upkeep. I rarely am not found without some type of needlework in my hands and I don't want to lose this ability. The taxanes are notorious for PN and the earlier chemo drugs are really nasty on the body. Herceptin and the AI's are equally scary.
I'm also not crazy about having treatment that could mess up whatever autoimmune thing is going on inside me.
I have to see a rheumotologist to get a confirmed diagnosis. At this point, I am kinda/sorta considering refusing treatment because of the impact treatment will have on my quality of life. If I was 45 I would be looking at this with a different eye, but I'm not.
I'm wondering what experiences you all have had with the double whammy of an autoimmune disorder and BC treatment. I'd greatly appreciate hearing your thoughts and experiences. I would especially like to learn about the affect of the AI's on the body.
Sep 16, 2017 01:51AM - edited Sep 16, 2017 07:09AM by marijen
Lita - do you have to have the chemo? Do you know the names of the chemo meds they will give you. I would spend the weekend learning about the meds. Is it guaranteed the chemo will work. Anf finally, have you been to the topic where other HER positive women talk. I think it's good to know that chemo might cause PN. I wouldn't want that either, let us know what you decide.
I can't tell you my experience because I'm not sure yet, I havr arthritis, I don't know which kind or if it is autoimmune. I asked my doctor for an ANA but she didn't give it to me.
There's a link above did you see it?
Sep 16, 2017 06:59AM dtad wrote:
Hi everyone...I had an autoimmune peripheral neuropathy at the time of my BC diagnosis. Its the main reason I didn't have chemo or anti hormone therapy. Both have been shown to cause or worsen neuropathy. My MO agreed with my decision not to have chemo but wanted me to take an aromatase inhibitor. I wasn't willing to take the chance of impacting my QOL any further. That was 2 1/2 years ago and so far so good! Good luck to all.
Sep 16, 2017 09:58AM - edited Sep 16, 2017 10:07AM by jaycee49
Lita, the problem with determining what is causing PN is that we end up on multiple meds at once. I've had mild PN from my MS forever but I'm sure one or more cancer meds have made it worse. The original chemo, which I only made it through two rounds of, made it worse, I'm pretty sure. But I also had Herceptin at that time for the rest of the year. I was on Herceptin alone, oh, wait, there was Tamoxifen in there, too. See? Multiple meds at once. No way to tell. I never blamed Herceptin because it was so easy, with NO side effects. Regular chemo for me was not tolerable. Herceptin also changed my original HER2+ tumor into HER2- mets. (That's what made it possible for me to be on the med I am on now, Ibrance, a wonder drug that is still lowering my tumor markers.) Can you tell I like Herceptin? I wish I had been able to take what you are being offered. My original tumor was larger than yours so I did the dreaded chemo. Herceptin is NOT chemo. It is a targeted drug and that usually means less side effects. I am stage IV now and I'd really love for you to avoid that. If I had made it through all 6 rounds of chemo, would I be stage IV now? Who knows. I actually believe that mine had spread before dx, even though I was checked at that time. My PN is mostly in my legs/feet. My hands are as good as a 68-year-old's should be, I think. I can't sew anymore but I think that is due to MS weakness, not PN. The PN in my lower legs/feet was about a 2/10 before cancer and is now probably 4/10 on the old pain level 0-10 scale. I hope some of this info helps. I like that I may finally have some info/experience that might be useful to someone. Please post any questions you have.
Sep 16, 2017 02:28PM rljes wrote:
Hi Everyone; I was diagnosed with Autoimmune disorders prior to dx of BC. I have Dermatomyositis, Scleraderma, Fibromyalgia & Raynauds. I was warned by my Rheumatologist cancer would be a possibility in the future - that was 5 years ago.
I just had BMX and now discussing treatments with MO & RO's. I am very skeptical about Radiation Treatments.
And I never considered Not taking the Anti-estrogen pill, but after reading some of the posts- I will ask my MO/RO.
I only take 5mg Prednisone for my autoimmune diseases. Nothing helps with symptoms. I cannot imagine what Chemo and Radiation will do to me on top of what I already have.
Any specific Chemo treatment to avoid or which has less SE for us with Autoimmune? And How did the Radiation treatments go for those who have Skin Disorders? (I cannot go out in the sun without breaking out into rash and blisters) But my RO insists Rad treatments will Help my disease. THX!
Sep 16, 2017 03:58PM marijen wrote:
Hi Rljessu, thanks for coming here. There are only a few of us. I had lymph node IDC with occult primary - they couldn't find it. LX and ALND Oct 2015. I was on letrozole until early August. But I'm in too much pain now and it started affecting my eyes. I was told this week I have arthritis - don't know a thing about it yet. Also allergies autoimmune thyroid with nodules. Radiation was not my cup of tea. I'm still dealing with breast edema a year and a half later. It also gave me lung fibrosis and thyroid nodules. There are some radiation sites that are active. Deep regrets and radiation recovery, just use the search function. Femara is a good site for AI. I have read that AI can trigger the immune system. There are studies linked there. I don't have the immune problems you have, not yet anyways but I do hope someone here will be by to answer your questions. No chemo for me - heart issues. Please be sure to think it through before you start more treatment. One question, how did your doctor know you would probably get BC? It helps to know how old you are when considering treatment. Sounds like you have a good doctor
Sep 16, 2017 06:08PM rljes wrote:
marijen - I sent you a private PM (it was my Rheumatologist that pointed it out)
Sep 21, 2017 05:05PM robinblessed54 wrote:
Well ladies, I had my CT guided bone marrow biopsy on Tuesday. OMG! It was horrible! More pain than anything I have had done for my BC. It is hard to describe what it felt like. I thought I would have nightmares that night because I kept reliving it. I was told I would have a conscious sedation but found out they would only do that if I was experiencing horrible pain. Well, I thought I was handling it alright but even with the Novocaine, it was such a distressing experience! :( The doctor gave me more numbing medicine, but when it hits the bone and they aspirate the marrow blood then use a drill to extract the bone marrow sample, you are holding on for dear life. They use a CT scan to put you in and out about 4 times to see where they are to guide the core needle. After it was over, my BP went down to 70 over something. I was hot and sweaty and almost fainted. Then I got the chills. The pain afterwards was bad too. If I ever have to do this again, God forbid, it will be with sedation, no questions asked! Let me know if any of you have had this done and your experience.