BC & Autoimmune Diseases: How many? What does the research say?
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wow! So interesting. I had Hasimotos years before bc. And basil cell skin cancer. I also have herpes simplex and have been taking acyclovir for many years to prevent cold sores. I now gave the immoglobulin condition MGUS, the precursor to multiple myeloma. I really believe once our body makes cancer cells it does it again. I had 7 precancerous polyps taken from my colon a year ago. It just never stops.
Robin
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I know that it is all related some how. As I posted, I was diagnosed with autoimmune issues in 2014 ( though I think I had problems way before-- joint pain and dry eyes ). I was put on meds for autoimmune issues in 2014 at official diagnosis. Then in 2015 developed a thyroid nodule (negative for thyroid cancer by biopsy). Then 2017 metastatic breast cancer. Too coincidental I think. I will always think that the meds given for the autoimmune issues somehow knocked my body off balance and let the cancer take hold. The body is a delicate balance and I was going along "ok" until we diagnosed the autoimmune issues and thought we had to "fix" the issue. Maybe if I had just left things alone my body would have taken care of itself. Maybe not. Maybe I was going to get cancer some day anyway. Who knows. I do think that science should look into this more- immune system and cancer. Kind of interesting (in a science sort of way ) if it wasn't life altering.
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candy, I agree with what you and the others are saying. It is a delicate balance and unfortunately they dont know exactly what triggers our bodies to react. I wonder also if my treatment for crohns disease possibly triggered things. I dont dwell on it because looking back the treatment worked at the time. I was on prednisone for a few months back when I was diagnosed with crohns, went a good 20 + years on no meds ( had surgery) then was on imuran for about 7 years (for very mild symptoms) During which the last 2-3 probably had breast cancer and didnt know it. We just dont know....as "healthy" people still get BC. During my time in remission I had 3 healthy children. Ran 2 marathons and had a great quality of life..I really am the healthiest crohns patient I know. Very fortunate.
I would be curious to know how those of you that did chemo faired? I tolerated 4 rounds if TC with minimal side effects. Honestly, if I wasnt bald at the time I would question that it was water. Took day of chemo and 2 days after off work and pretty much was back to normal. Walked 3 miles without fail even day of chemo. I wonder if my body loved the immunosupression from chemo..thoughts? It was Bizarre to say the least.
I will be seeing an integrative physician soon. I filled out an 18 page history form and was told it would be a 90 minute sit down appt. Wow. Are u kidding me? I only had 10 minutes with my onc at each chemo visit. I'm hoping this appt will allow me to share all my unique factors and get guidance on how to keep my immune system strong. Not sure if this is a one time visit or more. I will definitely report back to you all if this helps tie things together a little more. All of us have separate issues and see specialists as needed.( gastro focuses on gastro...do they really know how their treatment affects other conditions we may have?) I just hope this branch of medicine can help tie things together as I move forward. I'm looking forward to this thread and hoping everyone is feeling well
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I do wish our treatments for breast cancer were more individualized. As I said, I saw a genetic counselor ONCE. For a 1 hour appt. I think if that was standard care for us we could delve into our individual cases and then individualize our treatment plan. Maybe then we could have even more time with this disease and prolong things even more. Maybe even find "cures". That genetic counselor I saw was with a third opinion I got at the start of all this and his office is 6 hours away from me. Cannot continue with him. And no genetic counselors on staff where I get treatment.
As for the chemo, I only did 2 treatments before we switched to orals. But those 2 treatments were rough. I lost ALL hair, everywhere. I felt like I had the flu. Weak and dizzy. Lost appetite. Lost taste buds. Lost weight-10 lbs. Nausea. Koodos to DebAL for tolerating chemo so well.
As for my autoimmune issues- I am not on any meds now for the RA and Sjogrens. Maybe wrong of me, but I don't really want to add those to the cancer meds and I feel the cancer is more important to treat. Who know what is right. I may be doing more harm by not treating the autoimmune issues. My docs have no clue.
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HI Pingpong - may I ask what auto immune supressents have you been on? Since my last bout of ER visits - They are talking about putting me back on methotrexate. any comments? thanks! _ I Have Dermatomycitis and Scleraderma. thx - rj
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Hey all. I posted about this on the Ibrance Thread (I am on Ibrance first line therapy) and a fellow MBC sister Jaycee reminded me of this thread.
So I want to pick your brains.
I was diagnosed with Rheumatoid Arthritis and Sjogrens Syndrome in 2014 by a rheumatologist. I was diagnosed with metastatic breast cancer in 2017. I found the article (link below) today while surfing the Net. There are several articles that infer Aromatase Inhibitor use in patients may CAUSE autoimmune disorders. I cannot find, as of yet, articles talking about patients with autoimmune issues first and then getting cancer and having to be on these meds for the cancer. Or what our prognosis is with the cancer along with the immune issues, or how to treat us specifically.
Can anyone here give advise or articles???
Also, anyone here have this discussion with their MO? Or see a specialist at their cancer center to look at both issues-----co-manage care?
My MO and rheumatologist work separate from each other and we have not combined the 2 issues in my care.
I wonder if I can present my medical records to a research/teaching facility and see if they can help me and help others like us with autoimmune issues and cancer. How would I do that??
Here is the link to the article:
Anyone with suggestions please post.
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Hi Candy678
I too have several auto immune diseases - all before cancer. Dermatomyositis, scleraderma & Raynauds and other mixed conx tissue disorders plus Rheumatoid Arthritis. I had to go to the Mayo Clinic to get diagnosed. I was told to be screened for cancer. Of course I was in denial and never imagined I would get cancer.Unfortunately, my Rheumatologist and MO (let me say this gently) are awful. My MO is not familiar with autoimmune diseases and my Rheumatologist isn't familiar with cancer and they refuse to talk to each other.
I'm sorry I have nothing to give, except I understand your frustration. Take care, rj
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Candy, let me reiterate rljes's point. Different kinds of specialists don't know anything about specialties other than their own. I've seen many different kinds of specialists at the same time in big cities, small cities, rural areas, etc. and they have NEVER even considered the idea of working together on my care. NEVER. Call each other, at least? Nope. Upon further pondering, I come up with this: what would be their incentive? Why would they use their precious time to do that? How would they get PAID? I've always had this fantasy (delusion) of a group of my doctors sitting around a table in a conference room discussing my care. Never happening. (I may have mentioned this before somewhere, but my former MO did call my therapist once to see just how crazy I was. He blamed all my SE on anxiety. "Have you ever tried yoga?" being his only suggestion to deal with SE's of chemo.) I'm not sure being at a research/teaching facility would change anything.
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Hi Jaycee - When at the Mayo clinic, your dream came true. All my doctors sat at a table together to discuss my case. However, the problem is, going back home and NOT having my own doctors follow up what was discussed at Mayo. Frustrating! Plus I understand about doctors thinking your making all these SE's up. I went to 4 Doctors pleading for help before I finally had to call 911 and was Hospitalized for Sepsis, Double Pneumonia and UTI. I almost had to die before they took me seriously.
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Well I guess I am living in a fantasy world. I would think that at a facility like Mayo or another research facility with scientists that are trying to come up with the next big thing in cancer treatment, they would want to dig into our cases to see what makes the cancer "tick". How the immune system works in relation to cancer. And if a patients' immune system is out of wack with these autoimmune disorders what is going on with the cancer situation. What is our prognosis compared to someone with the same cancer but without immune issues.
Maybe my little simple mind is thinking wrong, but I was the first in my immediate family with a cancer diagnosis, ANY type of cancer. Our family is heart and blood pressure issues, not cancer. And I am the only one of the immediate family that also was diagnosed with an autoimmune disorder. Do they work together somehow?
Also with the research in immunotherapy for cancers, would immunotherapy work for us or would we not be a candidate for those meds in the future?
I plan on asking my MO these questions and get her opinion on if I should go to a research facility or not. And see what her thoughts are on co-managing with a rheumatologist.
I still think there is a bigger picture here and we need to tap into it and study it.
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Candy, no one is saying that kind of collaboration isn't a good idea. It's a great idea. I'm just saying that in my 30+ years experience with the medical establishment, it has not happened. rj had a good experience at Mayo but no local follow up. And immunotherapy is a no-no for us right now. I've looked at several trials and having an autoimmune disease is a criteria for exclusion. I think an individual MO who wanted to try immunotherapy with us would be allowed to but have to jump through many hoops to get insurance to pay for it.
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Jaycee- Like I have said before, I am in a rural area. I don't have a "cancer team". I have a MO. And I have a rheumatologist (that I actually have not followed up with in a year or so). In some of those facilities that have a "team approach" with a MO, dietician, genetic councilor, social worker, etc I would think that the MO and rheumatologist could collaborate on the meds prescribed and discuss possibilities for the future of our care, both for the cancer and the autoimmune disorders we live with. And I want to know the scientific "why" of what went wrong in my body and the "why not" that the future immunotherapy meds would not work for me. And I want to know the correlation between the immune issues I have and the cancer I developed (if any correlation). And most importantly what will work in my specific case with my specific body to continue to fight off the cancer. They (whoever they are) talk about individualizing cancer care, but all I see is prescribing the "standard" meds in the "standard" order to all of us, no matter what is going on in our individual bodies.
Just calling it as I see it.
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Candy, have you been to NCBI? That's where all studies are located. Also there is information at www.arthritis.org put in rheumatoid arthritis and breast cancer, choose last five years for most recent and there are eight pages to check. Put in the same search at arthritis.org. Hope this helps. I agree our doctors don't coordinate our care even at a teaching hospital. Interesting as if our parts aren't connected. The breast care teams are for liability protection.
https://www.ncbi.nlm.nih.gov/pubmedWatch this video. It starts out slow but it’s worth it. It will help you understand what goes on in the world of oncology in general. Not just about brain cancer.
Surviving terminal cancer
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Marijen- NCBI?? What is that? Thanks for the links. I will be checking out your recommendations. I will post more after I have had a chance to do some research--give me a couple of days.
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Hi all.
I was diagnosed with severe rheumatoid arthritis at 23. I have been using biologics for 10 years. Enbrel & actemra. This year I was diagnosed with breast cancer at the age of 34. I will have to go back on biologics, as otherwise I'm disabled but at this point I am extremely uncomfortable taking them.
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Well, giving an update for those on this thread, plus I have a question for you all.
I went to see my rheumatologist--I had posted I had not seen him in a while. I updated him with all that has been going on the last year (saw him 1 yr ago). When I told him of the TIA I had last month, he ordered a panel of blood tests. Well, guess what. They came back abnormal. Of course. He wants to see me again next Monday to discuss the results.
Question----- Anyone hear of Antiphospholipid Syndrome???? Looks like that could be it. I have been reading up on it.
So.... I called MO office to give THEM an update. My next appt was due July 24 with MO. Nurse calls back and says MO says rheumatologist can handle this and she will see me at my regular appt end of July. I can understand if I had an ingrown toenail or something and bothered them, but reading about this syndrome I wonder how it could affect someone with cancer. And of course the correlation of Autoimmune issues and cancer.
So, see what I mean. The docs only want to deal with their own thing. I bet the MO doesn't call the rheum and visa versa. No communication between the two.
I think we need collaboration with onc and rheum to deal with this. I want to stay stable and prevent future health issues.
Any advise??
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I hear you, Candy. Totally wish that our various drs would collaborate but IME it seems impossible. I don't know why exactly, as from a logical standpoint it would seem to ensure more accurate, safe care for their patients. IDK.
I wish I had any advice to offer on the Antiphospholipid Syndrome but I've never heard of it before. I guess I'm surprised that your MO is not more concerned about your TIA. What where their thoughts on that and what to be done to prevent another one in the future? IMO that would have an impact on the meds you are taking, which might include hormonal therapy too.
I guess no matter what happens or doesn't happen between your care providers, keep speaking up for yourself and the questions you have. If drs stop answering or listening, it's best to find new ones, even if it's difficult. I know, easier said than done as it's hard always being the Purple Squirrel.
Sending you the best as you head into your next Rheum appt. Keep us posted.
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My experience is the don’t want to talk to each other as much as possible. All of them. I had one endocrinologist who won’t answer my thyroid questions because I also have a thyroid surgeon following my nodules.
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Spoonie--- When I called MO after being released from the hospital for the TIA, she said she would see me at my regular scheduled appt which then was in a couple of weeks. When I went in for the appt she didn't seemed the bit concerned. I told her I put myself on a baby aspirin and was following up with the neuro doc I saw while in the hospital-- that appt was the following week. She never mentioned the hormone therapy. Or seemed worried about a TIA at my age of 48.
The concerning thing is when I have an issue and call the office, I get told she will see me at my next scheduled appt. And the nurse seems put off that I am calling. Like I am bothering them.
Am I bothering them too much, making too big of a deal about things??? I do see her every 6-8 weeks, so I do touch base with her often. But during those 6-8 weeks if I have a health issue it is wrong to bring me in sooner than planned???
I know the office is busy, and in fact they lost a provider this spring and my MO is taking on more patients. And I don't call them every whipstitch. I had an unplanned TIA and now this Syndrome causing thick blood. My cancer is stable and I am tolerating the treatment for the cancer.
Am I being a problem patient???? Sorry to be ranting on and on.
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Candy, what did they tell you at the hospital regarding treatment or follow-up? Do you like this MO and want to keep her. I would be concerned that she shows no concern plus that the nurse has a bad attitude.
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Candy, as far as I can tell, doctors do not talk to each other about patients at all. I've never gotten any of mine to do that for me. I gave up on it years ago. I hate to say this but how would they get paid for doing that? Cynical, I know, but you know me. You are the only one who will try to put it all together and figure it out. It is one of the things really driving me crazy right now. No doctor will even help me figure out certain issues. They have their pat answers, their cookbook prescriptions and that's all I will ever get. My MO was trying to tell me that I should take two 100 mg fluconazoles to get rid of my vaginal yeast. Well, I told her that fluconoazole doesn't come in 100 mg dose. It comes in 150 mg dose. She wanted to argue the point. I knew she was wrong and when I got home, I looked at my stash of fluconazole. 150 mg. So she is claiming to know more than I do about a yeast medication. That would not be possible. My only goal at that point was to hold her up and take her time so she would get even further behind schedule than she already was. Nasty of me but I did it anyway. Our only power. You and I are very different. I would like to see my MO less not more.
Anyway, what was abnormal about your blood work? You have it regularly at MO, right? Did the other guy test for other stuff? Sounds like he is looking for $$$ too. I quit going to my neurologist altogether. The last straw was when they put reflective contact paper on the check in window. When you looked in the window, you saw yourself, like a mirror. Very patient unfriendly. He is the only neurologist in town, though, so he can do that with impunity.
I wouldn't hold my breath waiting for any of your doctors to talk to each other. Not gonna happen.
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Candy - IMO you're not being a problem patient, your being your own best advocate. I can't advise you as what to do about your current drs/team/MO, however I can share that with my first MO things were MUCH different than with my current MO.
Like you state, my former MO's nurse seemed put off by my few requests/concerns. My former MO was IDK even know how to describe her. Just very set in her ways, despite being my similar age range, and surely did not want to listen to my concerns, studies, or take into account my Spoonie problems/abnormal labs/symptoms into her treatment plan.
If you care to read a synopis of my LAST visit with her, which was an UTTER F'IN nightmare, you can read it here: Pg 3 of Any Early 40s Delcining Tamoxifen? (half way down the page DEc 13th post) I was aghast. I learned right then and there that not everyone is cut out to be my doctor in cancer land and began the long search of finding someone that would be a good match. Thankfully I found her.
My current MO and her staff ALWAYS answer my questions. It may not be same day, depending on the issue, but for instance when I messaged them about an emergent eye/vision issue I was experiencing, they told me to go to Urgent Care to be seen immediately. I like to think that my current MO would have ben severely concerned if I'd had a TIA. When I messaged them about a Right breast swelling/pain issue I'd had for 2 days, they immediately scheduled me for a 3D Mammo and got me in to see her PA same day.
So, I guess what I'm saying, is if you are willing to look for a second opinion, there are drs out there that may be better suited to helping you navigate Cancer and Spoonie/Chronic Illness life. It may take some digging, but they do exist.
If it were me, I'd at least consult with another clinic/MO, to get their view on your specific situation. After googling some studies and info on TIA's and cancer associated with thickening blood/hyper-coagulation, having a TIA would freak me the F out. It bothers me that your MO was not seemingly concerned about the state of your blood labs after that incident. I would want to know I was safe on the meds I was on, that they weren't going to maybe make things worse, and so on. There appear to be Guidelines for the Prevention of Stroke in Patients With Stroke and Transient Ischemic Attack A Guideline for Healthcare Professionals From the American Heart Association/American Stroke Association and it doesn't appear your MO is either aware of them or cares. Not cool.
Anyway sorry to blather on, I just want you to know that I understand and support you in speaking up when you have concerns.
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"Transient ischemic attack (TIA) has gained increasing attention over the last 2 decades with the realization that the condition is common, portends potentially serious consequences, and, when identified early, can be evaluated and treated to modify future risk. Approximately 1 of every 8 strokes is heralded by a TIA.1 In this review, we examine 2 common questions about TIAs: (1) Should all such patients be admitted to the hospital? and (2) Should all these patients receive short-term dual antiplatelet therapy?"
Study Finds Patients Who Have "Mini Strokes" (TIAs) Should Seek Treatment Immediately
"Our results indicate that the short-term risk of stroke and other adverse effects among patients who present to an emergency department with a TIA is substantial," conclude the researchers. Their study, which is the first large-scale study on TIAs, is published in the December 13, 2000 issue of the Journal of the American Medical Association.
Because the symptoms of TIAs are temporary, many people do not go to the hospital when those symptoms occur. However, Dr. Johnston says patients should seek immediate treatment, even if symptoms are transient. Of the patients in the study who suffered strokes or other adverse effects within 90 days of a TIA, 44 patients were hospitalized for cardiovascular events (2.6%), 45 patients died (2.6%), and 216 patients experienced recurrent TIAs (12.7%).
Dr. Johnston and his colleagues were able to identify a few additional risk factors for stroke among the patients who suffered TIAs. Those factors included:
- Age (over 60 years old)
- Having diabetes
- Having TIA symptoms that lasted longer than 10 minutes
- Experiencing speech impairment or weakness during a TIA
Treatment of TIAs usually focuses on improving the arterial blood supply to the brain and preventing future strokes. A complete physical evaluation is usually performed. Patients considered at high risk for stroke may be admitted to the hospital after suffering a TIA while others may be treated as outpatients. Aspirin is the most commonly used medication to reduce clotting. Other medications may include dipyridamole, heparin, Coumadin, or others. Depending on the patient's medical history, medical conditions, and other factors, additional treatments may also be given (such as treatments for blood disorders, high blood pressure, high cholesterol, dietary changes, etc.). Some patients may also benefit from carotid endarterectomy, which involves removing fatty deposits and plaque from one of the two main arteries in the neck supplying blood to the brain.
Dr. Johnston's study suggests that further studies are needed to investigate better methods of treating TIAs to reduce the likelihood of future strokes. In the meantime, patients who experience symptoms of TIAs should seek immediate medical attention."
"What laboratory studies (if any) should be ordered to help establish the diagnosis? How should the results be interpreted?
Routine labs, such as a CBC, basic chemistries, INR, and PTT, should be ordered on all patients with suspected TIA, along with a fasting lipid panel and fasting blood glucose. A hemoglobin A1c may be useful in patients suspected of having undiagnosed diabetes mellitus. Other tests, such as urinalysis, blood/urine toxicology screens, ABG, BNP, or ammonia, may be useful depending on the clinical setting. While these tests do not help make the diagnosis of TIA they may identify coexisting conditions or TIA mimics that may help with diagnosis or management of the patient." https://www.cancertherapyadvisor.com/home/decision-support-in-medicine/hospital-medicine/transient-ischemic-attack-2/
"All patients suspected of having TIA should undergo neuroimaging as soon as possible. Magnetic resonance imaging (MRI) with diffusion weighted imaging is the preferred modality given its superior sensitivity in detecting cerebral ischemia or infarction, although in practice non-contrast head computed tomography (CT) is the most commonly ordered initial imaging study due to its lower cost and greater availability. Non-contrast CT has limited ability to detect cerebral ischemia or infarction, but it is useful to rule out hemorrhage or mass effect."
"Long-term management of TIA focuses on secondary prevention of TIA or stroke with antiplatelet and statin therapy, and risk-factor reduction (blood pressure management, glycemic control, smoking cessation/substance abuse treatment, treatment of metabolic syndrome, etc.).""The optimal dose of aspirin is not well-defined, but doses of 50-325 mg/day are recommended by the most recent AHA/ASA guidelines. Short-term combination therapy with aspirin and clopidogrel may be effective in certain populations (Asians, patients with high grade intracranial stenosis) but long-term dual antiplatelet therapy for TIA does not confer any additional benefit while significantly increasing the risk of bleeding complications."
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Marijen--- When I was hospitalized for the TIA, we did the stroke workup. MRI, carotid dopplers, echocardiogram, neuro consult. The tests were normal. To be expected, I read, with TIA since transient and didn't cause damage. Was sent home with instructions to follow up with PCP in 1 week and neuro in 2 weeks. PCP said wanted to defer to neuro and to wait for that appt. I started myself on baby aspirin to cover the 2 weeks until I saw the neuro. Neuro agreed with continuing the baby aspirin and said to follow up with him in 3 months and go to ER if symptoms reoccur. Then we found this new Syndrome with yearly visit to rheumatologist. I do like this MO. But one of the questions I wanted to ask her was if she has treated any cancer patients with this Syndrome and if she felt comfortable with me as her patient. I didn't get the chance to ask her since I was told to see her at next regularly scheduled visit and don't need to come in now.
Jaycee----YES YES YES. Pat answers and cookbook prescriptions. That is what I have said all along. I am getting the same cancer treatment as someone with no autoimmune problems. The monthly lab work I get with MO is TM's, CBC, and CMP. This bloodwork from rheumy was Lupus Anticoagulant Panel, Cardiolipin Antibody, and Beta 2 Glycoprotein Antibody. Studies for Antiphospholipid Syndrome that the rheumy thought of when he heard I had a TIA.
Spoonie--- Thank you for all the info you posted. I do think the hospital did what should be done for a TIA/Stroke patient. My issue is with the follow up with the PCP and especially the onc.
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Candy, well the hospital did a very good job with their testing. I wouldn’t expect a PCP to do anything but refer you to the neuro, maybe get you in faster than the two weeks you waited. Liking the MO and having confidence in her are two different things. I should have clarified but Spoonie covered it all for you. I’m so glad you brought this up. So now you just wait and see if you get another TIA and/or go straight to a full on a stroke? That’s very scary.
Spoonie you continue to amaze with your research skills and evaluations.
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Thx Candy for sharing that you were admitted and evaluated. Whew! I guess I must have missed that, now things make a bit more sense and I am very much less freaked out for your welfare.
I'm glad that you under follow-up care with Neuro. Hopefully nothing else will present itself in the the next 3 months for you. While it's good to hear that you do like your MO, I do wonder if they grant you as their patient enough time? One thing I love about my current MO is that she never rushes, even if running late. In fact, at my first visit, her nurse gave me the low down, saying "Just a heads up, Dr. Lassi is usually running late. She spends extra time with patients if they need it and she would rather be late, then leave her patients worried or struggling." I was thrilled to hear that. She lets me ask all the questions (I mean, within reason) I need to and says if anything else comes up to be sure to contact her, she'd be happy to answer more. In fact, at our first appt, she COMPLIMENTED me on having questions, for doing research, and having a point of view on my own care. She said in her opinion this allows her as a doctor to have a more informed dialogue and she even said she learned a thing or two during our visit due to the information/studies I shared with her. So again, it's all based on what you need as a patient, if you need more time and more questions answered, then you have every right to search that out.
So all that being said, if you like your MO and feel the care you get leaves you feeling safe and heard, then I see no harm in continuing care. However, if you wonder, wish etc, you might be best served by simply getting a 2nd opinion. IME it can't hurt.
Like you, I also think that our MO's would do more labs on us than the standard that other patients get who do not have other issues. But again, I think that is just a lost cause and we just need to figure out how best to make sure our asses are covered at all the drs we see. It sure is a frustrating puzzle to be stuck in the middle of trying to coordinate our own care, if you ask me. I have to be sure that 6 different drs receive updates, testing/scans, and so forth. It can be monumental, as I'm sure you are all well aware of.
Anyway, keep hanging in there.
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Thank you Marijen. I guess it's the teacher in me, and wanting to know the how's and why's of everything. LOL. I'm just glad I can be of some help to others in one way or another. BCO has been a wonder to me and I'm happy to pay it forward in some small ways in return for all the amazing support most here offer to each other. I would have been lost without this forum this past year So yeah, I'll gooogle for all of us.
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When I was first diagnosed with Cancer, I told my MO I had several auto-immune diseases and asked if he was familiar with them and his answer was that 'ALL auto-immune diseases were basically the same and it didn't concern him'. I should have left on such news - but unfortunately I get that answer with most of my different doctors. The only Doctor I found that wanted to work with all my Doctors was my Pulmonary Specialist but he admitted defeat when other Doctors wouldn't reply to him.
I must admit, I felt better on chemo. I've been on Disability since 2012. Its as though my Chemo put my auto immune disease in remission. Now that I've been off Chemo for almost a year - I'm in full Flare up mode. Best of Luck everyone.
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rljes, there are several chemo meds that are used to treat MS. I know people who have great success on them.
Spoonie, you are very lucky to live where you live where you can pick and choose among doctors. I don't. You are also very lucky to not be mobility disabled where traveling around to go to different doctors is an option. The world you describe is a fantasy to me. Not real at all. I'm really glad you have it. Some of us don't.
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JayCee - Please be careful as not all books appear as they seem.
It's funny how you can't tell things about a person from their writing, in fact, contrary to what you think, I was actually mobility disabled, deemed permanently disabled by Social Security at the young age 30, ever since 2007. In that time since, traveling to various doctors is quite the ordeal for me. I've lived this Spoonie life, with over 15 different chronic conditions since I was 13. I never had a real childhood. So drs were my life basically. I find no joy in traveling to see them, and since 2007, it's even more exhausting and painful than before and most times I have to be driven by my parents or friends or strangers. Coming home from an appt is hellish and usually I am in flare up mode for days afterwards, trying to recover. It takes a heavy toll, mentally and physically. The only reason I have the option to find other specialists, is since I am permentantly disabled, living on a very very very fixed income (I live $300 below the federal poverty line), I have no choice in where I live due to only certain apartment complexes take my housing assistance programs. If I had my way, I'd be able to own a home, live in the country and be miles away from everything, instead I will never own a home since I will never be able to work again, let alone teach, in order to afford one, cannot afford most basic necessities, and cannot even afford my own health insurance as such. The only upside of being forced to live in the a metro area is that many cities/doctors are within an hour drive. I realize not everyone has this option. I'm very thankful for the team I have. It was not always like this. I had to fight for many many years to get them together. 0
