FEMARA
Comments
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I had a great MO the first four years and then my employer removed the PPO insurance option and forced everyone into their HMO (Kaiser) so my MO choices are limited. My former MO, however, is very understanding and responds to my email queries when the HMO doc cannot or will not.
I'm literally within one month of completing the five years so I will stick it out to that date even though for all intents and purposes I've done the five years. As far as continuing for another five years, the current MO has been of no help so I've relied on my own research and my kindly former MO to help guide me with the decision. I'm fairly certain staying on an AI would lead to worsening of all the SE's I've experienced and maybe develop some new ones. I've already developed episcleritis, vitreous hemorrhage, arthritis, insomnia, worsening vaginal atrophy, tendinitis, memory loss. Although I was a high risk Oncotype score, I was stage 1 with negative nodes and clear margins and did 4 rounds of chemo so my former MO says taking all that into consideration I'm at considerably lower risk now than I was at diagnosis in 2012. All things considered, I do not see myself staying on AI's past the five year mark. I've been on a few month long breaks along the way, always due to ruling out AI's as the culprit in a new problem, which the AI's always turned out to be, and I know that I did start to feel better by the end of the month break so I'm hopeful that I will be able to recover at least some of my former good health.
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Margo it sounds like you know what you're doing and farther along than most of us in determining the cause of your SEs. than most to begin with. Can you tell me how it was determined you have arthritis and tendinitis? What about anti inflammatory medication?
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Actually found out I had arthritis and tendinitis by accident; after the opthalmologist diagnosed episcleritis in my right eye, he was concerned I might have auto immune syndrome from the AI, based on what he saw in the exam and what he knew about breast cancer drugs (including chemo and AIs) effects on immune systems. He referred me to a rheumatologist who drew blood and did xrays; her visual exam as well as the xrays confirmed the arthritis and tendinitis and the blood tests confirmed I did not have auto immune syndrome. I had suspected I had arthritis in my right hand and both feet as the year before when I was on Anastrazole and having joint pain through the roof, I had a few weeks of extreme joint pain in two fingers and the thumb of my right hand followed by noticeable swelling that did not go away, and the second and third toes of both feet curled up permanently, although I had no pain in my feet and still don't to this day, thankfully. I'm an IT professional and had developed what some doctors call computer mouse syndrome from using a computer mouse for decades, so I was probably prone to developing arthritis in that hand and the AI's just accelerated it.
On my follow up visit with the rheumatologist, she said she had researched AI's and found links to episcleritis and other eye diseases, which prompted me to go home and google that and I found the articles by Dr. Alvin Eisner about his research in that area. She gave me a prescription for a joint pain relief gel and said the arthritis was here to stay and might worsen during the AI tenure. Ditto for the tendinitis. Since then (February last year) I've found that even during normal exercise I can injure tendons/ligaments so I've had to back way off from what little exercise I was able to do the last few years, and I'm a former marathoner, so my normal exercise level was pretty good. I can no longer use light weights (2-5 lbs) which I used to do a few times a week and even doing bent knee push ups are very painful to my hands/wrists where the arthritis is.
I get a little crazed when I see the patronizing advice to exercise from all the BC experts when the drugs we have to take injure us to the point we can no longer exercise. And then they are surprised when people stop taking these drugs. It's nuts.
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THat's very helpful Margo.
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5 year date: I think it's arbitrary, an even number set up be the studies and articles. They all reference 5, 10, 15. There is a big drop out rate and a big recurrence percentage even on the AIs
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And Chemo Brain can be exaberated by AI, there's an article right here at BCO on the subject.
http://www.breastcancer.org/research-news/20131014...0 -
for some reason I can't correct the misspelling of rheumatologist?
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Just use Mari, that's fine BB
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Oops!
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This are the problems associated with chemo brain and AI brain
- learning new tasks
- remembering names
- paying attention and concentrating
- finding the right words
- multitasking
- organizing thoughts
- making decisions
- remembering where things are (keys, glasses, etc.)
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Send to
Int J Immunopathol Pharmacol. 2011 Oct-Dec;24(4):1099-101.Rheumatoid arthritis: a complication of aromatase inhibitor therapy?
Bruzzese V, Hassan C, Zullo A, Zampa G.
Abstract
We report the case of a 56-year-old woman treated with aromatase inhibitors for a breast cancer. Following one year of such therapy, the patient presented with widespread osteoarthrealgia. The clinical picture worsened 3 years later when the pain became more severe with swelling and stiffness involving several joints in a symmetric fashion. Biochemical analysis showed an increase of ESR, CRP and rheumatoid factor, as well as of anti-CCP antibodies. The x-ray was compatible with a diagnosis of rheumatoid arthritis (RA). Therapy with methotrexate, prednisol one, bisphosphonates and vitamin D was started, achieving a quick clinical remission. Aromatase inhibitors have been shown to alter the distribution of Th1/Th2 lymphocytes and increase the level of RANKL. A possible role of aromatase inhibitors in RA development has been further addressed.
- PMID:
- 22230418
- DOI:
- 10.1177/039463201102400430
- [Indexed for MEDLINE
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Hey margen -
Your list is pretty much me and has nothing to do with chemo or Femara/letrozole. It has been me all my life - I'm ADD. Yes, contrary to what was thought for years ADD is not only young boys but can be girls/women too and be an issue to deal with throughout life.
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Did it get worse on Chemo Kicks? I got that list from BCO article on chemo brain, link above
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This is NOT GOOD.
Send to
Inflammopharmacology. 2017 May 31. doi: 10.1007/s10787-017-0365-9. [Epub ahead of print]
Immune-mediated syndromes following intravenous bisphosphonate therapy.
Markovits N1,2, Loebstein R3,4, Bank I5,6,7,4.
Author information
Abstract
OBJECTIVES:
Intravenous (IV) infusion of aminobisphosphonates (ABP) induces cytokine release by peripheral blood Vγ9δ2 T cells, resulting in an immediate short-term inflammatory response in up to 50% of patients. We evaluated possible long-term pro-inflammatory effects of IV ABP.
METHODS:
Retrospective case-series study from one rheumatology specialist's clinic. 2261 electronic charts were reviewed for administration of 'zoledronate' or different brand names of zoledronic acid, and relevant clinical data was retrieved for patients who had received the infusion.
RESULTS:
Thirteen patients had recieved zoledronate. In six, new-onset or exacerbation of a previous inflammatory/autoimmune disorder was diagnosed within 3 months following infusion. Of these, one patient developed new-onset rheumatoid arthritis (RA), two polymyalgia rheumatica (PMR), two suffered a flare of Crohn's disease-related and aromatase inhibitor-induced arthralgias, and one patient acquired autoimmune hemophilia. Pre-existing malignancy and immediate inflammatory response following zoledronate were more frequent in patients experiencing new or worsening immunologic manifestations (3/6 vs. 0/7, and 5/6 vs. 2/7, respectively).
CONCLUSIONS:
Intravenous ABP may trigger induction of persistent autoimmune syndromes, especially when accompanied by an immediate adverse reaction or pre-existing malignancy.
KEYWORDS:
Aminobisphosphonates; Vγ9δ2 T cells; Zoledronic acid; γδ T cells
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My podiatrist, who charges $400 for custom orthotics, says to go to a good specialty running-shoe store (NOT FootLocker or Athlete’s Foot) and try the color-coded Superfeet and Powerstep (their newer Pulse line) before paying for customs. The Superfeet range is color-coded by not only gender, but purpose (type of shoe, even ski boots) and foot problem (overpronation/flat feet, high arch, plantar fasciitis, etc.). Because I have a very wide left forefoot due to bunion & bunionette (and a blister-prone callus beneath the bunion), I went with the Green Wide, which is technically for men who wear 3E & up. I’m a 2E on the right and a little less than 3E on the left, so the salesperson trimmed and beveled them to fit me and my gym shoes precisely. Powerstep Pulse worked well in my other gym shoes—and it’s $10 cheaper. Both ranges are $50 or less. Always buy in person, in the shoes in which you’ll wear them—never online.
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Thanks Chisandy, I'll look into it. Could use some more comfortable walking shoes too. How does one get a bunion anyways? I forgot to mention my ankles feel like they're going to crumble. But I'm still walking
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I also had problems with plantar fasciitis which were helped tremendously with the Superfeet and Prostep inserts. I use the green one and put in in my exercise sneakers which I change every 6 months, sneaker as well as insert. Made a big difference!!
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It’s an old wives’ tale that bunions are caused by wearing too-tight or pointy shoes. Mine developed at age 20, when I was speed-walking in plain ol’ leather Adidas trainers, and had rarely worn high heels before that. Too-tight footwear can aggravate them, but the cause is genetic. Flat feet are hereditary, and the inward rolling (pronation) that comes with forefoot foot-strike places pressure on the bone that causes it to build up over time (years), until it protrudes so far that the big toe begins to pull inward, exaggerating the bunion. Bunionettes used to be called “tailors’ bunions” because tailors used to sit cross-legged on the floor while pinning and hemming clothes, and the pinky toes and lateral edges of the feet pressed against the floor for long periods. But though they can grow more quickly if wearing shoes with a standard-shape toe box, another cause is that same flat-footed gait that causes the foot to land initially on the outside edge at the heel, placing force on the outer edge of the foot before it overpronates towards the forefoot.
Good distance walking shoes for wide feet are made by NewBalance, Brooks, Drew & Propet/Saucony (but they’re definitely of the gym-shoe variety). Finn Comfort (Germany) makes excellent walking shoes (with very good removable leather-and cork orthotics) in oxford, slip-on and sandal styles—not very fashionable and hideously expensive but appropriate in places where sneakers are a no-no. Mephisto (France) is only slightly less expensive and has a dressier range, but the forefoot tends to be narrow and I can no longer wear mine as my bunion & bunionette grew.Cuter ones are made by Alegria (rocker soles, excellent suede-and cork removable orthotics) in a variety of patterns & colors, in sandals, mules, clogs, and Mary Janes (there are a few new oxfords & boots). Alegrias run about $80-100, but if you go to their FB page and “Like” them, and sign up for their e-mail list, you get heads-up on clearance prices which can go as low as $50. They’re made in China but designed in NC, with great customer service. Both the Finn Comforts & Alegrias are shaped like feet, so if you’re vain or fashion-conscious (or run with a crowd like that) they aren’t very good for formal wear (though Alegria has some cool metallic-leather sandals).
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I had these on my Amzn list, guess I'll go for it..$68
Saucony Women's ProGrid Integrity ST2 Walking Shoe
4.5 out of 5 stars 1,647 customer reviews0 -
marijen - the gel prescribed by the rheumatologist is called "Voltaren Gel" - it's an nsaid, which of course is like ibuprofen or naproxen but in a gel, so the same precautions apply in terms of possible GI disturbance, cardiovascular problems with overuse, etc. I rarely use it because of that - I usually use ice packs which I have a boat load of from my running days, and I added to the collection in the last few years when I got neck and hand pain from AI's. I also get low back pain, interestingly I had it severely when I took a single dose of Boniva back in 2013 - the only dose I took since the pain throughout my body lasted 4 months - but I've wrestled with low back pain ever since. I use ice gel packs on the lower back twice a day and that helps a lot.
I have run in Sauconys for nearly 30 years; I love the wide toe box. I don't have wide feet but when you are running distances your feet swell. I buy off the shelf inserts from Spenco. I once spent $ on inserts from a sports podiatrist since I pronated on the left but wound up running poorly and getting injured so I ditched the custom orthotics and made sure I got the 'mildly pronate' style of shoes from Saucony. If you go on Saucony's, or Adidas or Brooks websites, you can see the different lines of shoes for non-pronators (no rigidity), mild pronators (mild arch support and tilted heel to compensate for pronation) and severe pronators, which are very rigid shoes. If you go to a running shoe store, they usually let you try them on and walk in them and they are less likely to pressure you to buy than a Footlocker or one of those mall stores. If you're not sure about stores in your area, the shoe websites usually have a store locator or you can look online at Runnersworld.com
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Margo I had no clue it was so complicated! I only walk, not run, how do I know if I pronate? I can't take nsaids. It's unbelivable that one boniva can do so much harm and here some of us are gulping down supplements. I recently noticed that supplements have no markings and once out of the bottle no way of knowing what they are. Anyways I'm hoping for something better than ice, an anti-inflammatory or a muscle relaxer.
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Oh, Margo. What an awful list of SEs. I switched to letrozole in August and I don't feel like I'm running on ruptured Achilles' tendons anymore. Exemestane was brutal. But it's only been 6 weeks of Letrozole so... I'm so tired. Today I napped, even though I'd gone to bed last night at 9 and slept well. My teens used to call me Rocket because I was always off and running. Margo, five years has to be enough.0
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I don't want to have RA but here is a good link with a lot of information in one place for those who want to check.
http://www.medicalhealthtests.com/diseases-and-tes...
I'm just going to add this symptom link.
http://www.webmd.com/rheumatoid-arthritis/better-l...This research is time consuming.
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Marigen - I did not notice any difference with my ADD during either neoadjuvant DD A/C or adjuvant weekly Taxol. I did loose all sense of taste and smell and appetite though. I just never thought about eating (or felt 'hungry'). So Hubby called me several times a day to remind me to eat 'something'. Which I did when he reminded me. No problem with eating - just never thought about it. Nothing had any taste - we went to Prime Rib Buffet for Thanksgiving that year, I was eating their hottest horseraddish (which is VERY HOT) and complaining that it was so mild. I did drink plenty of iced water and iced herbal tea as it was just habit to always have something to drink handy - so 'habit' took care of that and I was always well hydrated.
Don't have any clue about bunions - don't have any. I do have heel spurs that are apparently genetic. They've been there as long as I can remember out the back of my heels - not the bottom as usual. Makes for blisters when I get new shoes/boots unless moleskin is used for a while. Both my Sons also have heel spurs out the back too and always had.
We are each so unique!
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So true! We are unique. I have to say you manage quite well in spite of the ADD. I doubt I could do the same
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ChiSandy, I love this thread about feet and shoes, especially when I look at your tag line... I cried because I had no shoes...but then again, I won't get blisters.... You are so funny!
But seriously... brain organization and distraction, a problem prior to Femara.... much worse since. I act like I'm someone with ADD 3x! And, I'm a pastor to a small church, so much of the organization and planning falls to me...I too am one who tries lists, but hasn't found a method that works! Is there an organizational thread on this board?!
And seriously... don't get me started on the topic of lack of libido and dryness.... I've tried wading through the "I want my MoJo" thread... but it is way too long!
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Delete
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Another interesting research article about the effects of estrogen deprivation - this time on the psyche. I think depression would be reported as a SE of Aromatase Inhibitors a lot more except for the fact that so many people are taking anti-depressants (recommended by this website) for hot flashes. Notice this line in the abstract: "However in stark contrast to current therapies which must be administered chronically to produce an effect, the responses to estrogens are often observed after a single dose." Well! if that doesn't underline how critical estrogen is to mental health, I don't know what does.
Article title: Underlying mechanisms mediating the antidepressant effects of estrogens
Link: https://www.ncbi.nlm.nih.gov/pubmed/19900508
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Femara can cause mood change.
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not relevant.
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