BC & Autoimmune Diseases: How many? What does the research say?
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rljessu, I have an autoimmune disorder with skin involvement (I also get weird rash/burn-like patches if I'm out in the sun too long), and I was told that radiation would be very risky for me. The RO I saw said he would not want to do radiation, and if it was needed after surgery we would "cross that bridge when we came to it". Luckily it wasn't needed. I've read through the research and it varies, but there have definitely been studies showing an increase in late tissue necrosis and other severe side effects with this type of scenario.
I've also researched the link between autoimmune disorders and cancer, and haven't found much of a link there.
Also, I want to post again about the ANA test. a positive ANA, without the presence of other symptoms, does not indicate an autoimmune disorder. In many cases it takes years to get a diagnosis, as the symptoms often switch over time. Positive ANA test results occur in approximately 3 - 15% of healthy individuals, and it's more common in older women.
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Results of bone marrow biopsy negative!! Thank goodness that is over! I am still traumatized from this.
Robin
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Hi all - SummerAngel, I was originally diagnosed (before BC) as having lupus, but my Rheumatologist wasn't sure so he sent me to spend the week at the Mayo Clinic back in 2005. There, they said I had 'mixed connective tissue disorder'. In 2007 I was diagnosed by a biopsy with my Dermatologist having Dermatomyositis. I had no symptoms at that time, so I filed away his pamphlets. Out of site out of mind. I did have Scleraderma, Raynaulds & Fibromyalgia. Then in 2011 the muscle weakness set in and it took a year of Doctors and Tests to determine I had Dermatomyositis. I already knew I had this - but didn't connect the two!
I had my 2nd appointment with my RO last week and he is still determined for me to have Radiation after Chemo treatment. Both RO and MO do not think my Immune issues will be a problem. I personally think its going to be a HUGE problem.
As Jycee49 pointed out - if we are given multiple meds at once, we won't know which medication is causing a Side Effect. and I'll bet my MO won't be willing to give one type of chemo treatment at a time. He seems to think it will help my skin issues since I used to take Methatrexate (which gave me horrible SE - helped clear up skin issues tho)
Now, 4 weeks out from surgery (BMX) I think I have the Shingles again. I couldn't put my finger on it at first - I thought it was the surgery I was in so much pain, then the binder I had to wear - causing a rash, and under the arm - road rash feeling but no red rash. Now I have a spot under the arm, spots upper left back, feels like someone took a baseball bat to my back and now a fever. I've had the shingles 3 times before. I thought it was strange that I wasn't recovering like everyone else.
How is everyone getting along? Any helpful hints to be able to discuss this with my Doctors? Take care
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Hello friends. Rljessu, I read your post with interest as the shingles stuck out for me. I developed ocular shingles after my past Herceptin infusion (no. 17) last week. I had my first bout of shingles at age 22 on my right breast (where the most cancer was... I have bilateral bc) and when I told my RO she was very interested in that and felt there may be a connection. I have had shingles 6 other times, including Ramsey Hunt which is in the ear. I take Acyclovir daily to prevent it (and had the vaccination 10 years ago... so now the bouts are less severe, thank goodness!). So now I am on Famvir. I am so sorry you have it on your side and left back. Have you gotten on an antiviral? I hope so. And I pray the pain can get help with some good painkillers. I alternate with 1/2 Norco and the occasional low dose Gababentin.
I have a funny story about declining radiation. I too have multiple autoimmune illness, including connective tissue disease (elevated ANA's since age 19) and my main rheumy was very concerned about radiation for me. My MO took my case before the tumor board after my BMX and they came back divided almost exactly equally about whether I should do radiation or not, as I was in the "grey area." It see a big researcher MO at a major university for my second opinion on everything and when I went to see him about radiation and we had discussed things in depth, I asked this final question "when I leave this office are you going to say.. "she seems like a seemingly intelligent person, but she sure is stupid (I used a different word
to decline radiation?" I was very serious! He laughed hard and said, "no, not at all, it is a reasonable decision based on the unknown survival benefit and known risks." I breathed a huge sigh of relief and declined. I see him this week to discuss AI's. Right now even my main MO is considering Faslodex as a potential help since we are pretty confident that AIs won't be tolerated. I have a strong feeling I will declining these meds as well. I am heart broken, as I would like to take them but we are all pretty sure I will have a very difficult time. I currently have tendonitis in my shoulders and elbows (barely can use my arms) with herceptin alone. Only other med is the acyclovir. I couldn't even tolerate Taxol and Carbo, due to neuropathy so they had to give me Gemzar.I should add that I have been struck by lightening and that plays into issues with my nervous system (as one might imagine). Wishing you all the very best with your decisions. My heart is with you.
May we all be well.
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I never posted how happy I am for you, Robin. That's great news.
I just discovered something kind of disturbing. All this talk about immunotherapy? The new great hope for cancer treatment? People with autoimmune diseases are excluded from clinical trials testing it and, up to the doctor's discretion, excluded from being treated with it. Now, MY AI disease is iffy. MS had not been proven definitively to be autoimmune. Its autoimmune-ness is theoretical. People still do research to try and decide if it is. Other so-called autoimmune diseases have already been pegged as for-sure autoimmune. I find this distressing but maybe not so much. The most common serious "adverse event" when being treated with immunotherapy is what I had on regular chemo. Severe diarrhea leading to colitis. I may be glad to be excluded from this therapy. This just seemed like the appropriate place to post this info. People on my other threads don't care about it. They should because many conditions common in seniors are considered autoimmune. Rheumatoid arthritis, for example.
The best approach would be to avoid needing this therapy.
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Hi all - this is all so frustrating to hear. My MO & RO are out right positive I will not have any issues with having multiple auto immune diseases. Even my Rheumatologist is encouraging me to take chemo and Rad. Maybe I should go see my Dermatologist. My MO Pharmacist did say he would put me on acyloviar (again) when I mentioned having shingles 3 times. I said I would give Chemo One try - we shall see. I'm not even going to think about Radiation.
I'm also sorry to hear couragement that you developed shingles AGAIN while taking Herceptin. I was hoping that would be a non-issue drug. Take care
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Hi Rilessu,
How are you doing? Has the shingles calmed down at all, and have you started acyclovir yet? I hope the pain is diminishing daily. When do you think you might start chemo? Definitely try to only think about one big decision at a time. It is just too overwhelming otherwise. I think Herceptin is a non-issue for many, I just happen to have very difficult responses to meds and am often a paradoxical responder. Herceptin wasn't easy for me, but I made it through the treatments and am very happy I was able to do so. You can do it!
I send much support and care!
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Hi Couragement, the day I thought I had shingles I started 2 grams of acyclovir and upped my usual dose of prednisone, and it seemed to help. I have decided to start Chemo Nov 13 - I havn't told my MO yet.
Somehow I was under the impression Herceptin was more of an blocker/supplement with no Side Effects. I think I'll keep pretending.
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hi everyone. I was told today I have I have indications of autoimmune etiology. I first got my thyroid checked through blood test. That came back positive. Then my dr referee me yo have another blood test of my thyroid AB test and that came back positive with this autoimmune thing. Oh I also had an ultrasound of the thyroid last week. It came back showing 1 tiny nodule of .4 cm. I'm so worried now. I finished chemo in late February of this year and take tamoxifen. I'm scared that nodule might be bad. I hate this. I thought I was in the clear. About to finish my reconstruction abs now I have this huge weight on my shoulders.
Hugs e
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I was getting tested for a vaccine type clinical trial for triple negative but just found out I don’t qualify as my ANA panel camebaxk at 640 positive, with scattered titer. I don’t feel like I have any symptoms so this came out of way left field! Now I get to start down a new path of tests to figure THIS out. I was bummed not to get into the trial and kinda freaked out after reading about the seemingly infinite variety of autoimmune disorders. You all are so strong and I take my hat off to you!!! God bless! ✨🙏🏻✨
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diagnosed with ra rheumatoid arthritis in 2005
Bc 2017
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Hi Everyone - Its been awhile. I just got my port put in yesterday. Ouch! My skin is so thin. after about 5 hours post surgery it was red and ugly. Red Bruising about the size of my fist. Point of No Return for Chemo. My auto-immune symptoms are exactly like Chemo "red zone" SE's - I have always have a racing heart/ or strange heartbeats/ extreme fatigue, dizziness, Migraines, severe bone, muscle and joint pain - just a daily life for me, so I won't know if my SE's are from auto-immune or Chemo. Its going to be a wild ride.
Jacee49 - How are you getting along? Mybee33 was mentioning awhile back about vagina dryness, UTI's ect... she was taking Replens - and you mentioned not to because it contains Glycerin. Do you have something that works ?
I start my Chemo in 2 weeks - Same regiment as you - Any helpful Hints that stand out to you - that you could share?
take care everyone - Keep in touch please!0 -
rljess, right now, I am just using my trusty boric acid suppositories. They seem to help with UTIs, too. But I am dry, dry, dry down there. I have some Luvena but it runs out on my many trips to the bathroom at night and it is expensive. I'm saving it for if things get really bad. Right now, I'm ok.
Chemo-wise, I did not do well. (My whole story is in the thread "tell us your stage IV story.") Herceptin is nothing. I finished the year I was supposed to on it. The problem is that the other two cause such havoc that you imagine the Herceptin is also to blame. It is not. If your GI system is in pretty good shape, it may be ok. Lots of people survive it fine. My GI system was suspect to begin with. I've been diagnosed with IBS, the diagnosis used when they just done' know what it is. Lots of diarrhea and stomach pain. T and C ripped out my innards. I only lasted 2 of the 6 rounds I was supposed to do. The ER doctor who saw me after round 2 said my abdominal CT looked like colitis. I was admitted for 3 days. I was sent home feeling no better. The 6 weeks I was on chemo, I mostly sat on the toilet and cried. I either had diarrhea or felt like I did. I don't mean to scare you but the ticket may be to be prepared. (I was a girl scout.) I used Bentyl with no success. Now, I think probiotics may be the solution. Someone on the stage IV threads said she used Align. Other heavy-duty probiotics may also work. My MO was completely useless. I expected this to happen so it did was his take. Maybe your MO will be more helpful. All the info you get pre-chemo says your doctor will help you with SEs. In my case, that was a lie. The nurses are much more helpful, but everyone tries to encourage you to eat. If I did it again (I never will), I would eat very little. There's a school of thought that thinks fasting works. Seems a little extreme. Just remember what my MO told my DH when I was diagnosed with stage IV. "Most people BREEZE through this treatment." He's had hundreds of patients on it so I guess he knows.
After six months with no scans, I just got a really good scan report with no new anything, lung nodules smaller, effusion smaller, shoulder lesion smaller. I'm good.
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rljess, let me chime in on vaginal dryness. I have found Aloe Cadabra. It is fabulous! You can get it on Amazon. I use it every day in the morning. It keeps the landscape of your vaginal area moist and comfortable. It is more of a gel so doesn’t run out. Everything else stung me so bad. This doesn’t. Give it a try. Being on Femara makes everything that should be moist is dry.
Robin
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Hey Robin. Because of your post, I finally got out the Aloe Cadabra. It seemed really "soft" (I don't know how to describe it, not runny but like a lotion maybe) when I first opened the container a few months ago. It wouldn't go in without spreading all over the outside, I thought. Last night at bedtime, I put some in an applicator leftover from Monistat and put that in. I thought, with the warmth in there, it would "melt" and run out. Nope. Stayed in. None came out. It did burn a VERY small amount but nothing that would make me not use it. I'm wondering if I can use it at the same time as the boric acid. I use that every other night. I'd like to use the Aloe every night. I can't skip the boric acid but think the Aloe needs every night. Pondering.
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Jaycee - Sorry to hear your journey was so hard. my stomach is usually made of iron, thou lately I've had some nausea, but I attribute that to nerves and stress. Good to know Robin about Aloe Cadabra - hope it works for you Jaycee.
take care and thanks for your stories. I like to be pro-active - sometimes too prepared - so I am annoying the heck out of my navigator.
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rljess, I'm really glad you are going to start chemo now. Your previous posts made me worry that you would fall into the trap I did. I wish I had started sooner. Maybe I wouldn't be stage IV now. I wish I had finished all 6 rounds. Maybe I wouldn't be stage IV now. I wish that I had earlier mammograms. Maybe I wouldn't be stage IV now. But I am stage IV now and I'm ok.
One more thing you need to know about these chemo drugs. You will completely lose your sense of taste. Everything will taste like cardboard. You will keep putting salt or sugar on/in things and won't be able to taste it. It's really frustrating and weird. But when you are too sick to eat, it doesn't really matter. When I thought I'd have to live for 6 months like this, I gave up. Don't give up. It's a huge mistake.
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jaycee49 - The Aloe Cadabra burned terribly. I had to remove it and throw the container away. I have vulvodynia and it was not workable for me. I’m still sticking with my Replens although there’s another name brand that works well too. Still keeping those vaginal infections and UTIs away, so that is good.
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Jaycee - I will think of you and your journey and try my best not to give up. Thanks for the encouragement. I waited 6 years between mammograms. it could have been much worse.
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rljess, so today is the day. You will feel fine today. It is a long day but you get lots of attention from the nurses. Mine were great. My first round was not too bad. (I actually went back for the second.) I hope you are on the thread for those starting chemo Nov. 2017. I assume that thread exists. I'll check. You might even look at starting chemo Dec. 2017 since it is so close to the end of Nov. You never know where you will find someone who you will really click with. All kinds of info is available on those threads, like here. Do you have a port? There is a numbing cream you can put on a few hours before port use to avoid that stinging lidocaine injection they usually use. MO has to prescribe it and it seems a little expensive but I have had the same little tube for three years. Still have my port, still use the cream. I learned about this from my starting chemo thread. So worth it. Check in if you can. I would love to hear how you are doing. (Darn. I wish I had told you about the cream sooner. It's called EMLA.)
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Oh, great. I see you are on the thread starting chemo Nov. 2017. Good deal.
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Hi Jaycee! Thanks so much for checking in on me. My MO gave me the Emla cream and Dex steroids, Compozine, Ativan, Zoloft - all before the Big Day - I was prepared! Day 3 and I'm ok. Neulasta pod went off yesterday, so I'm waiting to see if I have bone pain - or should I say more than my usual bone pain. Actually I'm feeling so OK I want to knock on would. I'm sure something is going to hit me - Its just too soon I'm sure.
I did find my calcium deposits in my fingers are coming back with a vengeance. I might have to go get them cut open and drained. they are very painful. Usually they come on slowly. they came on over night. I did ice my fingers - to promote my Raynaulds. Using Tree Oil on nails.
Since they cancelled my "Feel Good Look Good" class they brought me a bundle bag of beenies and scarves and blankets - I was eyeing the cosmetic bag on display - all I wanted was the eyebrow pencil kit - but I refrained. ha
hope you are doing well as you can Jaycee - keep in touch -I'll check in on the December group as well. Have a great day!! Its people like you that get me thru this. Thx!
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That's great, rljes. I hope things continue on a good trend.
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Hi Jaycee - so far just Extreme Fatigue and constipation. I can live with that!
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rljes, I had constipation the first weekend. I took a laxative and it immediately went WAY too far in the other direction so be careful with that. Fatigue was an issue at first but leveled off. I could doze off a 9 AM...and 10 AM...and 11 AM, etc. That gets better. Hang in there.
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Jaycee - Exactly what happened to me! I'll learn to have a happy medium! Ohhhhh! I cut my hair really short this morning (Day#7) and a chunk of hair fell out later - Huh! (picture in Chemo in NOv)
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New treatment in the works for autoimmune disease:
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Cannot wait to read all the pages. I know I have lupus completely proven w malaria rash durooing photosensitivity / fluorescent light exposure with tiny 4red blisters on arms and chest and back. Then often joint flares for two weeks whereas I do not have joint pain otherwise. I also believe I have Sjogrens with no tears at all. When I finally got to a rheumatologist who gave thorough physical he also ran labs and found AI inactive and I surmise this is through 7 months on xeloda.
Most interesting is my RNPwas 617 which is astronomical. But the other rheumatologist and oncologist DID NOT EVEN KNOW!!!!!! THATcan be a sign of active cancer in BC patients. New rheumatologi verified my research. AAND FOR ME THAT ONE LAB SEEMS TO BE THE ONLY T sorry caps were still on. true clue that cancernis active. But does new oncologist assure me he will run that lab to keep better tabs on me. No.
Wondering what others had on their RNP lab and why that result.
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I looked RNP and I found this chart and have no idea what it all means but it looks like it could be helpful?
https://www.mayomedicallaboratories.com/it-mmfiles...Bluebird when you come back, is there a link you can give us on the RNP test and active cancer
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