BC & Autoimmune Diseases: How many? What does the research say?
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Hi marijen, I wanted to comment that I have been on LDN many years. If I remember correctly, dosage above 4 mg can lead to severe restless leg syndrome. I had to go off LDN 7 days prior to mastectomies and colonoscopy. I could not restart the meds until 7 days after to ensure all pain meds were out of my system. No Lyrica, etc. per my neuro. Strongest med allowed is tylenol or aleve. I do take baby aspirin everyday, with the exception of surgical timeframes. I have been very fortunate that LDN has helped me greatly with MS of 18 years. I did have a relapse with first mastectomy and it was rough, but finally coming around. Good luck with LDN, hope it serves you well.
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Thanks for the info Irishlove! I have not received any other comments on LDN and it seems most here don’t know about it. I was lucky to hear about it from my hairdresser whose son is a pre-med student that worked with a Naturopath. It would have been nice if I had also been givenit years ago. Now I’m going through the steps to increase the dose. 2.5 is not enough
And that’s right, you can’t be on LDN at the same time as opioids. So that must include anesthesia I wonder? So sorry you have MS. I know there is a lot of research going on for new treatments. 0 -
Viewfinder, I've never liked the "stage IV only" idea. I read in these threads BEFORE I was stage IV (it was obvious to me that I was headed there). I don't know if the mods react to non-stage IV people posting in the stage IV threads. It is all a continuum to me. I'm glad your sister's life is conducive to being able to handle all this junk.
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Irishlove, another MS person here. I looked for the co-morbidity thread and couldn't find it. Deleted for inactivity? Marijen, many MS people I know take LDN with good success.
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Thanks jaycee. I've been given it for neuropathy from the "conventional" pain doc. In that department it's a new offering. I did a lot of research since hearing about it and it seems to be best available through naturopaths. I feel I just got lucky learning about it at all...
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jaycee,
I spoke with my sister who was having her port removed today. I asked her to call her doctor before it was removed and ask the following questions:
"Since you had nodes removed from both arms, can you get shots, blood draws, blood pressure, IV's in either arm? If not, where can they be done? What about through the chemo port?"
My sister called back and she was told:
"She's got it all wrong."
Oh well, what can I say?! Maybe I did get it wrong, but everything I know about lymphedema and from the lymphedema education I received by a specialist is not to use the arm for those things if you've had nodes removed. I guess every case is different.
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I am confused - did she get nodes removed from both sides or not? Because I can't think of a reason why they would do that?
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Viewfinder, just for info sake, some of the things you listed can be done with a port and some cannot. MY port has been used for blood draws, injection of contrast for CT scans, injection of Pet scan stuff, IV's, (infusion of chemo, of course). The port is connected directly to a big vein. Please excuse the non-scientific language. It cannot be used for "shots" which are either IM (intramuscular) or subcutaneous (under the skin). It certainly can't be used for blood pressure measurement, which I'm sure you realize. Depending on the state where you live and the prickliness of the medical providers, it may not be used for several of the above mentioned processes. Those may include all but IV's. Mine take one look at my face and proceed as requested.
Are you going to find out from your sister what exactly you got all wrong? That seems like a blanket statement from people who don't want to explain anything.
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jaycee,
My question was if none of those things could not be done in either arm, then where? Though I may have not worded it clearly, I know things like shots and BP cannot be done through a port.
However, I thought she should at least ask before the port was removed today.
My sister lives in the State of Washington. Next time we talk I'll ask her why they said that but I don't want to become a pest. She's supposed to be going to one of the best cancer hospitals in the United States.
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marijen,
My sister had nodes taken out on both sides for a total of 10. She only had cancer in her right breast but everything that was done (double mastectomy, and ovaries and fallopian tubes removed) as a precaution because she has the BRCA1 gene mutation and is Triple-negative.
I tested negative for the BRCA1 gene mutation.
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oohh! Thanks for the clarification viewfinder.
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marijen , I don't know for sure if they took out the nodes because of her gene mutation. I do know they removed everything else because of the BRC1 gene. They also wanted to remove her uterus but she refused at this time, since she would miss too much work. As for her Comorbidity (I think you call it), she's totally stopped ingesting sugar for the past four days and her severe Rheumatoid arthritis isn't bothering her quite as much.
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That makes sense. Sugar is a great cause of inflammation. Your sister has been through a lot. To find out she hasthe BRC1 gene is bad enough. A real shock.
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Viewfinder, I get her position. Your sister seems to be in a really good place mentally. I wish I could be there. My problem is my running-away veins when anyone tries to get into one. I said I didn't even want to get a port unless it could be used for blood draws. It seems that every time I walk into my MO's office, they want some of my blood. When they said they could use it for blood draws, I agreed to get one. They will have to fight me off to get it out. The IR who put it in said I could keep it for ten years. It will most likely outlast me.
My issue with your sister is the seven nodes on one side. I have a friend here at BCO (not stage IV) who had nine nodes removed on one side (all negative) and then got lymphedema. My experience with doctors, no matter how high class the facility, is that they ignore things they should not. I hope that at least, if she actually had seven nodes removed, they take precautions on that side with BP, etc. Does she fly? My lymphedema didn't show up until I flew across the country to my son's wedding, over two years after surgery. Precautions could have been taken but no one told me about them even though I talked about the trip to my son's wedding non stop at MO appointments.
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So MS and BC, I just saw the thread. Jaycee how did they find your MS? What all do you take/do to combat the symptoms? Are there triggers for MS?
Irishlove, this is the first time I’ve heard of pain meds for colonoscopy. What’s that about? Why would a colonoscopy cause pain?
So much to learn, so little time!
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marijen, I think Irishlove was talking about pain meds for mastectomies.
As far as my MS (we're talking ancient history here), three months after my son's birth (1984), I lost the peripheral vision in my left eye. My PCP said I had a pinched nerve (how many of us have heard that one) and it would go away. It did. (Child birth triggers MS because it is related to estrogen in the body.) When my son was six (1990), I lost a few spots of vision in both eyes. I went to my ophthalmologist. A very smart guy. He said it looked to him like MS. He sent me to a neurologist. He did a brain MRI. He dx MS more based on my symptoms than the MRI. The MRI was not that bad but I have had several since then and my brain is all white. I'm not sure they could see brain mets. I did a lot of research on the meds available then. I was not impressed. I've never taken any MS meds except prednisone. Never solumedrol. The two times I took prednisone was after surgeries that required general anesthesia. Each time, a body part became temporarily paralyzed. After my mastectomy in 2014, my right arm was paralyzed for four months. (I think Irish asked about that somewhere in the thread.) Now, letrozole causes pain and stiffness all over so who knows. Could MS be in play? Maybe. I am getting slower and feebler by the day. I don't have any MS triggers besides heat.
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Thanks, Jaycee. Heat bothers me badly too. It makes it harder to walk. I had to stop the letrozole because of the stiffness and pain and vision problems. In the mornings I would wake up feeling like I was half dead.
I've been reading on MS. There is an article that says tamoxifen is good for MS. And a study that says postmenopausal women with breast cance have a higher risk of getting MS. Both those things are related to estrogen.
I've been getting pain in my face bones and headaches I've never gotten before. And other symptoms. I suppose time will tell. : (
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jaycee,
I've been reading another thread, which contains a lot of information about ports (several comments written by you). I can't find that thread now but the parts I could digest were very helpful. (RANT: we need to be able to bookmark posts!!!!)
My sister amazes me...even though she's often near-crippled by Rheumatoid arthritis. Mentally she is in a really good place, always been a very positive, happy and friendly person. Don't know if they still use the public speaking term but she's has a very "open face."
From conversations I've had with my sister since she was fist diagnosed about a year ago (3 months after I was diagnosed) I sense that some of her doctors have ignored some things they should not. Yet, she sailed through chemo remarkably well. To me that'a tribute to her oncologist, who got the "cocktail" mix right.
I speak with my sister daily and try to share what little knowledge I have. The hardest thing I've had to do regarding her cancer is tell her is that I believed she needed a double mastectomy, not a lumpectomy that she first insisted.
jaycee, you've been through so much and yet, here you are, helping others with your knowledge and keen insights. You have my heartfelt gratitude.
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I sent you a PM on how to find that port discussion.
Your sister sounds amazing. I have two sisters who had BC. One did not survive. The other is fine. It's a very tough road you follow together. Sisters.
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I am 10 years post diagnosis. Had a single mastectomy with silicone implant. Now I have had a chronic dry cough for 8 solid months with no relief for even one day. I’ve been through cardiology, gastroenterology, an endoscopy, Pulmonology with a bronchoscopy and tried reflux and allergy Rx meds with no relief. Now I am beginning to wonder if it could be autoimmune response to implant (which I need to swap for new one after all these years) but if I knew I had autoimmune from it I would just have it removed permanently. Has anyone’s else experienced this
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This might be an odd question but do you take any blood pressure tablets? Specifically Lisinopril? My husband had a chronic cough for months had all kind of scans and tests done. Eventually a cardiac surgeon mentioned that chronic cough was often a side effect. May not be applicable to you but thought it worth mentioning.
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I have a question. If you could get rid of one of your diseases, which would it be? I've just read a thought-provoking book, The Unwinding of the Miracle (read if you can, amazing) and it's, well, provoked thought. The book is not related to this issue but during my thinking, it came up (as did a myriad of other deep topics). I have stage IV breast cancer and MS. It would be easy to jump to get rid of cancer first. But I'm pretty sure I would rather get rid of MS right now. My MS symptoms are preventing me from living this "life to the fullest" I'm supposed to be living while I still can. I want to be doing more traveling and getting around more easily than my MS will permit right now. I don't want to die but I do want to live more fully for the time I have. Is this crazy? Is anyone else there? I guess it is just a question for stage IV but maybe not.
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I hear ya Jaycee. Not crazy thoughts at all. I'm like you in the opinion I'd much rather get rid of my other diseases, Chronic Late Stage Neurological Lyme Disease, Fibromyalgiab and Chronic Fatigue Syndrome. Like you, these are the conditions that impact my quality of life the most and keep me from living the life i want to live. For instance, they keep me from being able to walk my dog, from being able to drive to visit my sister 30 mins away, they keep me from so many simple things that most take for granted. Even cooking is a chore that uses many spoons that I don't have in excess. I would LOVE to get rid of these. They also keep me from working so without them Id be able to go back to work, to save money, and to own a home or travel or get my nails done or my hair colored or just in general not live under so much financial duress. So yeah, you're not crazy at all. It may sound strange to others that do not have other co dxs but it makes total sense to me. Hugs.
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Have either of you tried acupuncture for your conditions? I’m going for treatments soon
https://www.hindawi.com/journals/ecam/2014/972935/0 -
Yep. Acupuncture helps a ton with my migraines and joint pain. Plus it was wonderful as far as helping with hot flashes from the endocrine therapy side effects.
Good luck with your first visit. Its kind of like going to the chiropractor. Takes time and a about 6 weekly visits to start seeing & feeling the cumulative effect. Then after that all I needed was to go in once or twice a month to maintain the improvements. But I definitely felt improvement at my first visits, the effects just wore off faster in the beginning.
Hope it will help you Marijen.
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Thank you spoonie! I’m looking forward to feeling better.
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My sister had surgery that I mentioned above. Surgery was July 8th. She saw an occupational therapist yesterday who told her she has lymphedema in both arms. I'll have questions but need to do some research and take time to calm down first.
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Viewfinder, didn't her doctor's say, "She's got it all wrong."? Guess not. THEY got it all wrong. But, believe me, they will never admit it. I just can't believe how quickly that happened. I've seen your thread on that but I wanted to find that quote and I knew it was here. I have lymphedema in my left arm (cancer side) that didn't show up until I flew across the country. (No one told me that might happen and I should wear compression.) It will not go away whatever you do. I wear a compression sleeve on that arm and it's not that big a deal. I do get tired of putting it on every morning. It's really tight and I have punched myself in the face many times. I'm not sure at all what they will do about BP's, blood draws, shots, IV's, etc. Both arms is tricky. No arm to use. The port idea keeps coming back to me as an option. How is she doing? Should I follow the other thread? How are YOU doing?
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jaycee,
I sincerely appreciate your concern for both my sister and me!
Yes, they said "I got it all wrong," when I had my sister ask where she can get shots, blood pressure, etc. with nodes taken out in both arms. That was before they told her recently that she had lymphedema in both arms. Actually, I didn't frame the questions very well, but NOT everything was wrong!
I'll remind her to discuss this, including the port.
I hope my sister can put on her sleeves without trouble. In addition to lymphedema in both arms she suffers from very bad rheumatoid arthritis (a few days ago they gave her a shot, I believe prednisone). I've read about donning devices; they look weird but may be helpful if she needs one.
My sister is doing okay. She's in another state where her marketing show starts tomorrow. There won't be any time for the two of us to talk about her health until next weekend.
In the meantime, I'm doing research. Your post has reminded me to add some things to the list I'm compiling.
As you can tell, I'm very concerned about my sister. Maybe too much. I don't want to overwhelm her or turn her off. She's the creative type; I'm the analytical/research type that tries to look at every angle...from good to bad to everything in between.
I would love if you followed the other thread! I may not be posting much until she and I speak.
Thanks again!
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Hey ladies, just wanted to stop in and share some news. It's been a crazy crappy stressful summer and unfortunately I am now a new member of the MS club.....le sigh.
I did teach my Neurologist something though, at my appt last week. He wasn't aware of the fact you mentioned above, Jaycee -- MS can be triggered and exacerbated by lack of estrogen. He googled it on his computer right there in front of me and said, "Well hey would you look at that. You learn something new everyday.".
Anyway, I had a priro historical dx of "high risk for MS or probable MS" back in 2005. Followed by abnormal, slightly increasing lesions over a period of years from 2007-2011. My MRI's had been stable up until Jan 2019 but when I had new ones run in Aug, 15 new lesions showed up. Guess what's been going on in my body since this spring, ugggh limiting my estrogen of course with Tamoxifen and with Zoladex?! Go figure.
So, had a Spinal MRI done, thankfully that it is clear currently. No lesions there. Just the new ones getting to know the old ones as they hang out like xmas lights in my brain, the majority of the newest ones appearing in my Brainstem and Cerebellum.
I am a bit lost with how to navigate in this MS medical world....anyone have tips for a newbie? Did you all get a second opinon? Were there baseline tests that should be run to compare to later, like cognitive skills/motor skills/etc? I'm not really impressed with my current Neuro, but not sure where to even start.
Sounds like from a few of you, that your symptoms were aggravated by surgeries and cancer treatments. Did they die back down or stay that way after some healing? I just have no idea where to go from here.....
Is there a MS board like BCO? Any help is immensely appreciated my friends. Thanks in advance.
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