Vent about Permanent Neuropathy
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Hi all. I'm new to this discussion board but believe I have CIPN after taking Herceptin for a year. I'm two years out from diagnosis and can no longer walk much or, my favorite, dance. Wanted to add that taking Crestor definite makes my symptoms worse.
Since chemo and rads, I was ecstatic to end my treatment, but then I started having major SEs from my AIs (Exemestane and then Femara). I need to take a statin, but my feet get tingly and numb.
I'm getting tired of myself and tired of my problems. My energy is gone and I can only stay active for a couple hours when I have to take a rest. My spirit says do more, but my body says no. I see my MO next week. I have fears that cancer has spread, but reading this discussion describes my symptoms to a T.
Started Cymbalta last month which is helping. Fatigue, burning feet, instability, urinary urgency, constipation. Nerve damage, right. Want to walk my dogs more. Have a swollen knee.
You all are helping me through this. God bless us all.
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Joy66, I found your post helpful. I probably just have co-existing foot annoyances but the side that has the plantar fasciitis now is the side that at one time had the CIPN going back to the heel and slightly up the leg and the other side did not. I Googled about the condition and decided to forego any doctoring at this point, opting instead to do stretching (maybe helps,) icing (no help,) and arch supports with nice gel heels (had these even before, but got deluxe models now.) Walking is a main exercise that I do, so if that gets hampered by heel pain too much I may check into the cortisone shots also. My one friend told me it took a year and a half for her plantar fasciitis to resolve, so unless I worsen I am prepared to wait it out. Thanks again; and thanks, maryna8 for your reply also.
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Today I went to post chemo PT ( now provided by my insurance). The therapist gave excercises to help my swollen knee (from an injury), but she said she sees a lot of CIPN in women, even a year after chemo. She said there is not a lot to be done except to elevate the feet when possible, wear support hose on aircraft, and take it easy. She also sees CIPN in women and men who have had surgery and chemo in their lowerabdomen.
She also gave me enhanced kegel exercises and suggested icing my arthritic knee three times per day. At least I know she understands.
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Hey BosumBlues. Now that I think about it, she may have said to just save time to relax, which I pictured as lounging around with a book.
She suggested tai chi and also gentle joints water aerobics to aid in stability. The occasional near-falls seemed like flukes at first, but now I know I have to be mindful.
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Hi, Sylvia,
This is actually the day after the tomorrow that I planned to reply to you, yesterday was somewhat of a blur and I didn't get any computer stuff done. The days go by so fast!
I did take the time to check out my hosta bed, which I found destroyed last spring; I have since found out it was probably voles, or field mice. Since our winters have been mild, the ground is easy to dig in and they burrow down and eat the bulbous roots. So when I went looking for my green shoots, I found holes. I replanted my bed last year, and tried to keep an eye on it, for whatever that's worth. Yesterday I checked it and 2 of them are missing. One of them was quite mature, it is so annoying. I have Googled for a solution and there does not seem to be a good one, except for planting them in wire cages. That is probably what happened to all the tulips I planted some years ago too.
As for living for today; when I was first diagnosed and going through chemo, everyone would tell me to Just take one day at a time. When I was finished treatment, I kept doing the same thing to the point of not making any plans farther ahead than a week. When I started traveling a little bit, I had to reach out, make plans, and take a leap of faith! So it is with our cruise, who knew I would injure my knee while trying to get stronger? I am going to see my GP today, he sees lots of these kinds of injuries, I just want to know if I can work/walk through the pain or if I need more attention. It is better, but after 3 weeks still not pain-free. I would like to be as good as I can be before taking off for Europe.
I was saddened and angry to read that London had an attack of terrorism over the weekend. I don't know what the answer is when the attacker turns out to be a British citizen who was obviously radicalized. That is very hard to control, surely someone in his family, or among his friends or neighbors could notice something, but hard to say. It seems he was already known to police and MI5, I suppose it is hard to watch everyone on these lists, but one would think someone close to him would notice his behavior.
As far as I can tell, I should be able to get the Nigel Farage radio show at 2 PM Monday through Thursday. I have been unable to check it this week, and he is not on Fridays. So I will try again next week.
I was reading Chris Woolams' post on alternative therapies for Cancer. He was writing about gene-editing, it seems they have had success using it on children with leukemia in the UK. There were no toxic drugs involved. There had been no use of it prior except in laboratory. He is feeling quite positive about this method, and talks about how many cancers, including breast cancer, are still being treated with drugs developed in the 1950s. This is one of his latest posts, quite interesting. I stumbled across a doctor's blog accidentally on another site, who turns out to be a "alternative therapy skeptic". I read many of his posts just to see what he thought. He slams chiropractic treatment, massage therapy, acupuncture, supplements of all kinds; probiotics, vitamins, etc., meditation, mindfulness, yoga and on and on. He thinks that hospitals that are starting to incorporate alternative therapies in with their orthodox treatments are nuts as well. Chris Woollams' thinks that many of these "doctors" are paid by the drug companies to dissuade people from trying alternative therapies, and incorporating them into their lives. I think I tend to agree with his view; to be closed to absolutely everything except orthodox treatments seems to be the height of arrogance and close-mindedness. There has to be a mind/body connection, we are not just a collection of moving parts!
As to Vaccines, I don't know what to think. I do know that parents now are expected to take their children for a dizzying amount of shots at a very young age, when their bodies are so small. My acupuncture doctor told me he refused this for his children, and had the shots spaced out much farther so they had time to absorb it all. I also saw in Woollams' post he mentioned the original Salk polio vaccine, which used Simian monkey Virus. I'm pretty sure that's what I got as a child, and probably you too. He mentions a study which links this with a higher rate of cancer, but then another study came out trying to disprove those findings. As usual, it leaves us with no clear answers.
Yes, there is much to read and think about in the CancerActive posts from Chris, if anyone has the time and desire to go there. I will return about it soon as I get through it.
I am going to close for now, before I lose this post, haha. I will talk to you again soon.
Love, Mary
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Hi, Ozoner,
We do all sound like we have many of the same problems, I also have the weakness and aching in my legs, the tingling and burning feet, etc. etc. About 3 weeks ago I somehow injured my knee, it is better but still not good. It is really hard not to go down the rabbithole of despair when things just keep going wrong. Exercise is what we all probably need, and it's what is so hard for us to do.
Please keep us updated on how the Cymbalta works for you. So far I have resisted the drugs offered, but am getting a bit more open to the idea. I did try the Neurontin/Gabapentin early on, but didn't like the drowsy effect it gave me.
Mary
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BosomBlues,
I did not stay on the Neurontin for 2 months. I tried for maybe 2 weeks and didn't like it, I had a lot of pain for a few months and then things got better so I thought I was going to be good on my own.
It was about a year after ending chemo when the CIPN kicked in again and kicked me much harder and led me to where I am now. Which is not a very good place sometimes. Another problem this far out from chemo is that I am more disconnected from the doctors that I saw during my treatment. The doctor(s) I look to for help now seem to not take in the whole picture, and everyone around me seems to think I should be back to normal as if nothing had happened. Add to that the issue that I look normal, everyone tells me how wonderful I look. Thus my complaints are laid down to aging, (I am 64)or lack of exercise (!) I think my GP thinks I have cognitive impairment, because of the symptoms I ask him about. I feel that when it comes to the medical field, it is a lack of their understanding the problems I suffer from, with no good answers to the questions I ask. And, in their defense, maybe there are no good answers. .
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Hey Maryn,
I just read that Cymbalta reduces the anti-estrogen effects of AIs!
And BosumBlues, I will definitely do the H2o balance moves.
Hopefully my MO will have some comforting advice about CIPN and Cymbalta. I will see him Friday. I really don't want to hear that I need to be back on AIs, just like my GP won't be pleased when she hears that Crestor makes the CIPN worse.
In a perfect world, I could purify my body of all chemicals (except Dr. Pepper!). I'm happy to have a good prognosis, but these drugs ain't for sissies!
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Bosomblues,
Just to clear things up, I don't think I have cognitive impairment, I meant that my doc probably thinks so because I have been going in to see him too much. The latest visit was because of my knee pain. I know that I come off a bit scattered when I see him, mainly because I know he is not going to be in there long and I am trying to get in my questions. But you are right, even the docs don't want to hear about the CIPN, I have brought it up too much and I think he thinks I am whacky.
As for the Neurontin/Gabapentin, I see no point in taking it because I have been told it is for Neuropathy which is in the hands and feet. I have been told it does not help the weakness in the legs, which is my biggest complaint. I do know people who have the condition only in the feet, and they say that this drug helps them. Most of them have diabetes and are taking very large doses.
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Hi Ozoner,
I hope you don't have to go back on the Als if you don't want to.
I'm glad the Cymbalta is helping and hope you can stay on it if it helps.
Did you have a scan on your knee to diagnose arthritis? Mine started hurting about a month ago, it snaps, crackles and pops. The doc moved it around and thinks arthritis, but haven't had a scan.
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Hi all, I, too, am dealing with Neuropathy. I was wondering what you are doing to lessen the side effects. In my feet, I sometimes have feeling and then no feeling in my toes and the balls of my feet feel as if I'm walking on water. At night, I has tightness on the upper feet. As for my fingers, some day they feel ok but others a sensitivity to them. Walking is becoming a problem as I know my balance is off. Has anyone experienced anything like this? I'm taking B6 and B12. What can I take or do to lessen the symptoms?
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Ozoner, I have not heard of Cymbalta interacting with the AIs; however, it does interact with Tamoxifen (possibly reducing effectiveness, since it uses the same liver enzyme.)
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Anyone tried Healing Touch? I was a doubter at first, but I got some relief!
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I have extreme weakness in my legs. I nearly drowned twice because I could not get out of the ocean.
I believe that both atrophy and CIPN have contributed to this. Exercise, combined with pain relief and rest, is my current focus.0 -
Hey Highhopes,
I take 400 mg magnesium, 1400mg Turmeric Curcumin and 400 mg of Ubiquinol (COQ10), and my support group friends for Hereditary Spastic Paraplegia recommend Protandim. They are always looking for treatments since there is no cure. I also normally do therapy in the warm pool at my gym, which is great! HSP is a progressive, neurodegenerative disease with peripheral neuropathy as one of the main symptoms, so I am planning on keeping this symptom for the rest of my life, whether I like it or not. I just stumbled on this site because I happen to be going through breast cancer treatment now which is making my HSP worse! I just hope some of the peripheral neuropathy goes away after I finish the Herceptin around 12/17. I had a different type of breast cancer in 2002, which caused me to seek further diagnosis for my lingering peripheral neuropathy and other deteriorating functions. I was diagnosed with HSP in 2013 through genetic testing. It explained a lot, but I was still thinking about all of the others with CIPN and how I couldn't tell when the onset of my disease began and when the lingering effects of chemotherapy ended. I just remembered how frustrated I was when I was trying to find out what was wrong with me and why the CIPN was lasting so long. The neurologists I first saw didn't really give it much credit when I told them about the chemo. It was only a few neurologists later, who decided to check further and have me genetically tested. Now I have an explanation, but I still think about the CIPN and how the doctors discredited it. It is a serious condition that should be acknowledged more. More of us are surviving, and the QOL needs to be addressed now. There should be a disability entitlement for it. I felt like I shouldn't have complained since they saved my life in 2002 and now, and I really think the doctors feel that way too.
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Joy66, thanks for the info. I will check with my oncologist to see if it's okay for me to take. Sorry that you have to deal with HSP and breast cancer together. Wishing you the best.
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Bosomblues,
I have Triple Negative BC so hormone inhibitors are not prescribed for me, I do know people who are taking them and they have varied side effects, from fatigue to thinning hair. But you never know, the fatigue and ADD symptoms could be lingering from chemo, it's hard to tell.
And though I do not take the hormone inhibitors, I share your ADD symptoms to a scary degree, I find I do much better if I have specific tasks, errands, or appointments scheduled for any given day. On the days that are open, I tend to go from one thing to another while never finishing anything. I can start cleaning in the kitchen and end up in the basement and the sink still has dirty dishes and the bed never gets fully made, even though I made two trips into the room! I am trying to find something to focus on in a day, and then do my best to follow through. I am feeling like there are no docs who are any help, except my acupuncture doc. He still treats me as if I have legitimate complaints. Much of my dis-ease lies with my physical complaints; for instance, when I try to build up the muscle I have lost because of the neuropathy weakness, I injure the very part of my body I am trying to work on. It leaves me feeling so frustrated and helpless, and constantly trying to treat symptoms.
Some days are definitely better than others, some days I am in an aching state of pain all day. Some days I feel almost normal, but those are the days I usually overdo things and wear myself out.
Yes, this is a good place to commiserate!
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Hi, Joy66
The last sentence of your latest post to Highhopes:
"I felt like I shouldn't have complained since they saved my life in 2002 and now, and I really think the doctors feel that way too."
I actually had a doctor tell me that after he put an injection right above my ankle for varicose vein treatment. I went back a couple of times complaining of the pain and he was dismissive. I went back almost a year later still complaining of pain, and I told him I thought it was tied to the neuropathy and that it was a rotten side effect. He looked at me and said "Well, you are here to complain about it!" And then proceeded to go into a rant on unappreciative patients. Enough of him!
Even most cancer docs are too dismissive of the side effects of chemo, my own MO told me blithely "Oh the neuropathy will go away as soon as you are finished with your treatment." Wrong, and I can't even go and complain to him, he retired on the last day I had chemo!
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Still taking duloxetine for neuropathy. My new MO assures me that it does not interfere with Tamo. It works wonders for me. My pain is now minimal and most of the time nonexistent.
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my CIPN didn't show its ugly face until right after the last chemo infusion That was 2 years ago next month. It got better but in the last week I have been less active and the shooting electric pains that have been gone for months returned. I had hoped the numbness, stiffness and poor position sense were going Tom be the only thing left and now it's back. Boo his
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Blownaway- Congrats. So happy the duloxetine is working for you. Any side effects at all?
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I have permanent neuropathy affecting all my extremities, besides other permanent neurological complications from an autoimmune disease similar to multiple sclerosis in its practical effects. My neuropathy has symmetry but my left side extremities are a bit more affected by it than my right side extremities. As to my feet, there is also nerve entrapment, effects of which overlap and compound those of my demyelinating disease. I can walk a little, but any more than a little gets me punishment (more suffering) from my miserable feet. My ability to stand in place is very limited. It has taken years of intensive treatment and a lot of apparent nerve death for my feet to feel so much better – over about nine years, the feeling of heat in my (now partly numb) feet has (generally) subsided from like atomic-hot burning to like white-hot feeling to like red-hot feeling to (usually) low like just under smoldering heat feeling, sometimes with diffuse stinging sensation. My hands also have paresthesia and feel about the same (usually) low smoldering heat, sometimes with diffuse stinging sensation. It no longer happens that any of my limbs might suddenly "go to sleep" – I quit driving until a few years after the last of those events. Nerve pain strikes – like lightning bolts and so many other painful strikes as if by electric axes, electric pitchforks, electric icepicks – still can come to any part of my body at any time. My nervous system also interprets formication and perspiration as very painful.
Among my other neurological complications are my memory problems, especially as to short-term memory [As some examples, often I immediately and completely forget conversations and other experiences and information until specifically reminded of them; and sometimes reading is very slow and difficult for me because I cannot remember my way through reading a sentence (by the time I get to the back end, I have forgotten everything about the front end, and it can take me many more tries over at reading through any single sentence to remember my way through and understand it)]; frequent long struggles for word retrieval; variable tinnitus; frequent balance problems; proprioception problems, so I must always be in lighting and keep battery-powered lighting devices around in case of power failures; very easy startling; noise sensitivity-to-intolerance; and my sense of time – especially but not only calendar time -- being so different from before. My ability to communicate in language has also got appreciably better from the worst of it some nine years ago. My abilities are variable but only limited anyway. [My sincere apology if my writing is incoherent.] In short, as to my cognitive impairment, it is all very like traumatic brain injury, because it is clearly brain injury, but injury by (disease) chemistry means. In addition, my arm use is very limited and most arm motions are painful from injuries, and my back is weak from decades of compensation to avoid the most painful arm motions. One arm, with its upper part (humerus) extended away from my trunk at all, can lift its own weight and about one pound; but it has considerably better lifting strength if it is close against my trunk. More than just a few reaches in a short while gives me bad backaches which shortly become incapacitating unless I (further) medicate myself and quit my arm use for a while. Also, much of the time I am extremely tired, and I am always at least very tired.
For pain management, I am on a steady diet of Naproxen, and I am also on Tramadol as needed for the duration, and I use Hydrocodone instead when I need something more. [ I do not use any opioids when I am going to be driving an automobile.]
One Doctor warned me to wear pressure socks for all my up-and-about times -- that there can be a vicious cycle of sorts going on with nerve damage and fluid pressure, each tending to worsen (or advance) the other. My miserable feet hate any shoes other than the kindest flip-flops (or, in the event of a polar vortex, some Hello Kitty slippers), so I wear the Futuro pressure socks with open heels and open toes. They are supposed to help support my nerve bundles and control fluid pressure on the nerves in my feet.
For the first years of the worst of it all -- with my feet having like atomic-hot feeling and quick successions of lightning-like pain-strikes -- it was over two years of that (atomic-hot) degree of continuous pain -- I stayed in bed except for necessary trips to the nearest bathroom and to medical appointments. I also kept my tortured feet hung up in a large sling fashioned from a blanket tied in a single loop around (and perpendicular to) both of the upper side rails of this type canopy bed frame.
https://boltz.com/canopy-steel-bed-frame.html
The bed frame is every bit as sturdy as indicated, so it can be used as I described for improvised traction, or for improvised trapeze use, or for limb strengthening exercises with elastic resistance bands. One of our Boltz canopy bed frames is assembled with an over-the-door shoulder pulley placed around one of its upper side rails. By pulling from its cord below, I can easily slide it to any point along that horizontal rail.
Because of my other serious chronic illness (other than cancer), the condition of my feet, and because of my (variable) balance issues and proneness to falling, my Doctor advises me to rest as much as I feel the need to rest; to use mobility appliances; and to try to keep off my feet generally. [ Sometimes – usually about twice a month -- I get out for my little one's Veterinary care and for a little shopping and/or visiting.] I usually require a great deal of sleep, and otherwise, I mostly rest, down with my feet elevated. When I walk at home without a rollator, I tend to do my stepping and turning by sliding my feet.
I have a few options for fairly safe exercise. There is a small pedal-exerciser I can use while seated.
There are some rectangular plastic aerobic exercise platforms/steps with an ordinary walker placed over/around one end of the stack of steps (the stack of steps fits between the sides of the walker).
For outdoor exercise in nice weather conditions, I have an adult safety swing for which a swing frame is anchored in my yard. My husband uses a two-step polypropylene stool when he hangs up the swing and takes it down, and I use the same stool to get myself into and down from the swing. I can swing for about fifteen to twenty minutes before having to stop for dizziness, nausea, and vomiting.
Besides for their having under-seat and on-seat carrying capacity, rollators can serve as even some more handy pockets if bags such as Tyvek ones or soft canvas ones are kept fastened to their upper bars. Here is an example of a canvas organizer bag, having larger and smaller compartments, made to fit most any rollators or walkers. It can be fastened turned over, too, to keep the pockets and their contents covered. There are also accessories like cup-holders available for rollators and walkers.
Rollators with larger diameter wheels are best for making a smoother go over less smooth terrain. I have one with smaller wheels (and now failed brakes) for indoor use at home. For most outings, including most shopping trips, I have a Drive Duet rollator, better suited to indoor/outdoor use, and easily convertible to a transport chair. It is placed upright in the car so its handles will not be loosened from bouncing against the car floor. A single short bungee cord with hooks keeps the rollator from too much rolling and tipping in the car.
For when I need to go away from home without assistance, I have an old Invacare lightweight folding walker/rollator (in most respects, similar to the Drive Clever-Lite in present production). It has a rigid under-seat basket, so that part needs removal for stowing, but even with my limited arm use I can get it into and from the car folded or even unfolded without assistance – but with more difficulty to load it the unfolded way, by standing against the seat, gripping its back bar with both hands, then lifting, using my elbows as a fulcrum against my trunk, to tip the wheels up to where they can then roll into the car from my pushing forward at the handlebars. See, the positioning/arrangement of the brake grips keeps them from bouncing and bearing against the car floor with either folded or unfolded stowage during transport.
For most of my outings, except for while I am driving, I wear conforming silicone earplugs like these, but with the strings cut off at the handling tabs. These are rated for twenty-six decibels of noise reduction. Over them I wear my NoiseLESS Earphones, also indicated to reduce noise by twenty-six decibels. When the combination of devices is too much, I can move the earphone cups up to just above my ears, and they stay in place there, ready to put back over/around my ears. All the difference these make in noise levels makes me much less uncomfortable in any noisy settings.
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Bosomblues,
We do indeed have very similar issues, perhaps together we can come up with a formal diagnosis! :-)
I looked up some ADHD websites, and I think you may have found it; I have all those symptoms. You say you were very logical, calm and a level-headed decision-maker before. I was not, I have had these symptoms for years, maybe always. My husband started having health problems years ago, in 2011 these things took a bad turn, and in 2013 a much worse turn. I became a caregiver, and he passed away in February of 2015. I was diagnosed with BC in February 2014, for the next year I tried to be caregiver to both of us while I was going through the chemo. This occupied my mind and body fully, and my purpose in life was keeping to his schedule and mine, including his special diet, both of our doctor visits, medication lists etc. I was forced to be focused, and now that he is gone and I am on my own, I am really noticing the ADHD-type symptoms again.
I think the CIPN exacerbates these symptoms, by adding the nerve discomforts to the general mental chaos.
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Hi, Icietla,
Wow, you certainly are dealing with a lot, and you have come up with a lot of ways to deal with your issues. I have so much admiration for you, and the things you are doing to make your life livable.
Just to be clear, do you have any neuropathy from chemo, you mention your condition is from "chemical" influence, plus complications of a MS-like condition? It certainly sounds like you know what you are dealing with, and thanks for all your tips on ways to living better with reduced mobility.
Glad you have joined the thread!
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Blownaway,
So glad the duloxetine (cymbalta) is working for you, I was wondering about that drug. I have looked it up before and was curious to hear from someone taking it.
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Hi, garden gypsy,
Your regimen of exercise and rest sounds perfect, I have the muscle weakness too. I was 2 months into an exercise program and then injured my knee, it's been a month and it's better but I will have to take it easy when I get back into exercising.
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Mary,
That would have made me furious that the doctor snapped on you and then retired! Most of my experience with doctors have ended up with ambivalence. It's so hard to find the right one. If the issue is out of their box and requires more expertise and research, most don't want to do it. They are just stressed humans and have too much on their plates like a lot of us were before we got too stressed and got cancer! You might just have to go to another "expert", but you just don't know if he/she is the one until you've seen them, and that may be just incurring more expense and wasting more time. I just feel like I have to be my own advocate all the time and just doctor myself if I can. Just when you think they are on top of things and you can relax and be sick, you find that they are not. Like with my Herceptin infusion yesterday. I am supposed to have an echocardiogram every 3 months BEFORE my infusion to make sure my heart is strong enough for it. The nurses were alarmed that I hadn't had it yet and had to call the doctor to see if it was ok. Apparently, my heart has a history of being strong, so it is ok for it to be 2 days after. It is really scary though! They just said they made a mistake and that another one in the crowd must have done it. I'll stay on top of that next time if I'm not too foggy! I feel like I have to take care of everything! You have to be in your right mind to be sick!
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Blownaway, If you posted "I'm gonna take Cymbalta (duloxetine) no matter what," then I would not feel the need to reply because anyone can make their own choices, but since you write, "My new MO assures me that it does not interfere with Tamo.," then I have to again present info. to the contrary. I have written several times in the past, including what drugs.com and BCO has to say about the Cymbalta/Tamoxifen interaction. So, it's not me calling your doctor a liar...this time it's the Harvard Health Publications below, where it indcites that duloxetine does interact Tamox.
See chart in body of article Antidepressants and Tamoxifen that states a moderate interaction:
http://www.health.harvard.edu/newsletter_article/a...
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elimar - she just said that there are two different types of duloxitine and that the one I am taking might actually increase the Tamo effects. My previous onco at MD Anderson is who initially prescribed it. This current onco agrees that it is ok to take with Tamo.
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Two different kinds of the same drug? Are they purposefully trying to confuse us so that we can't make our own health care decisions?
SMH.
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