MIDDLE-AGED WOMEN 40-60ish
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glennie - my PCP said no and my MO ignored my complaints of pain and I even circled the little #8 sad face on her pain chart! So those ARE my proven track record doctors! Not once through all the chemo and Tamoxifen treatments over 5 years did I ask my MO for pain pills but now I'm saying IT HURTS and no offers from her. I don't think asking her directly at this point would matter since I'm not going to go back on any more treatment. I have too much pain - I'm through! When I see her in about 10 more days she'll probably finally move me from every 3 months (for 5 years!) to every 6 months.
I'd be embarrassed to go back to the rheumatologist who diagnosed the fibromyalgia. It was 20 years ago and he said there was nothing you could do about it so I just never went back. But I was young and doctor-less so that made sense at the time.
He prescribed Sulindac and cyclobenzaprine and I've had one doctor or another refill those over the years since then. I could get by for a long time in-between doctor's visits. But now I find myself more chronically afflicted. Ugh, I hate to add rheumatologist to my growing list of doctors. But you're right, he might be the one to go to for constant pain. I'll say, "Heyyy, remember me?" Haha, oh gee. His partner treated my father for a rare auto-immune disease and once when my father and I were there MY rheumatologist suddenly opened the door and we just stared - shocked - at each other for a moment then he got his composure and called my father's doctor out for a minute. It was the way he slung the door open and I probably looked guilty as hell, haha
I must be a "burn your bridges" kind of person because when I'm through, I'm through! But fortunately, I also don't mind facing the music for my disappearances so yeah, I'll put him on my list.
I guess I need something more than flying by the seat of my pants now.But next week I start my no doubt long ordeal - I mean association - with the Emory Back Clinic. Maybe they can spare a few! They make you feel like a damn addict for asking for them and I haven't had any since my knee surgery in 2012. Maybe I just have guilt written all over my face all the time! Boy I hope I never get accused of anything serious!
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Eph - heck yeah! I don't look a day over 26! My son better stop aging!
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Your MO circled an 8 on the pain scale??? And gave you nothing??? Ask how he would feel if he was at an 8. If you were in the hospital, and told them you are at 8, they would be giving you IV morphine. When you go back in 10 days, ask for a pain medicine consult. **give me 10 lortab/vicodin/Percocet and they will last me a month** That is NOTHING!
I just watched this video required by work,,, supposed to help us learn about having better attitudes, etc etc,, and it was all about a 63 year old BC patient who comes to the ER with PAIN!! One nurse thinks she is drug seeking. The woman's son overhears and gets mad, cuz he says "we told you her pain is different this time, my mom is not looking for drugs, she wants to know why she is having pain". And they ran tests, and she had mets in spine. So this is supposed to teach us not to have pre-conceived ideas about patients,, and I thought it was really good (a little hard to watch with the subject matter) cuz too many medical people DO NOT take pain seriously. I have seen it in my career as a pharmacist,, and having been a pain patient,, I've seen that side of the line as well.
As to the rheumatologist,,, do you have to go to the same one? If you do want to, you could tell him that NSAIDS (sulindac) worked for a long time, but now they are not controlling the pain. You would like a new eval concerning your pain. Just throwing this out there at you. Yes, I really do understand not wanting to see yet another doctor. I have too many of them myself. Maybe keep that idea in your back pocket, in case Emory doesn't help you?
When you go to Emory,, just keep telling yourself,,, I am in pain, and I deserve to have some adequate treatment for it. Do not feel guilty for asking for pain meds. You need them. I really hope Emory will help. Please keep me posted. (((hugs)))
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OMG, heartnsoul76, I cannot believe no one is addressing your pain. I think that sometimes when they have you down as one type of patient then you get stuck in the pigeonhole for that disease and they are don't transition quickly enough to meet the new health needs you might have. When I hear what you describe, I think it is something other than the FM (but I'm no expert, certainly not on FM, even tho' I have that also.) I wish you could discover that is at the cause of your pain. My PCP once told me that diagnostic tests are really very limited when it comes to pain. What I mean is, he was open enough to say something like, "just because there is no Dx does not mean your pain is not real." Unfortunately, this is how Pain Seekers can manipulate the system to get their substances to abuse.
Anyway, that is good news about the Vit. D. Although I though some of the mega-dose takers were doing possible harm to themselves, it does appear that some need a huge amount to effect any change. You said you will continue to monitor it and adjust the dosage, which is always a good idea. I am still with the group that feels it is a good idea to get the level up to the high end ( not over) of the normal range...like 60-80. Have you noticed that you are sleeping better? I think that my sleep improved a little when I built up my Vit. D. It takes Vit. D to produce (or maybe it is activate) melatonin, so maybe that is it.
glennie19, Interesting tale about the video, and a good example too. Like so many, back pain got my BFF in to see the doc, and it was mets to spine and hip. While no one wants a Dx of mets, at least it is something concrete. As I said above, when a Dx test doesn't turn something up, it is harder and more frustrating to get help or even the right meds to take the pain away. (Please tell me you got a little buttered popcorn to watch that video? Kidding!)
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Glennie, my poor cousin is HIV+. She was infected by a boyfriend 30 years ago. She is one of those rare people who is naturally resistant to HIV, so although she is on the HIV meds now, she is fine. However, she looks like a tough broad and she has serious back problems. Every time she went to the ER unable to walk, the docs would take one look at her chart, see the HIV and refuse her pain meds. I am absolutely sure they assumed she had HIV from sharing needles, except she doesn't.
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Pain is seriously under-treated. It is something that I climb on the soapbox about. Momine: that is just terrible about your cousin. And the exact type of thing we are suppose to "learn" from that video. Wondering if it will make any difference at all? And no popcorn, Elimar. Could have used some Doritos,,, or maybe a Scotch. Having fibro,,, you know, there are no good diagnostic tests for it,,, a trash can diagnosis when they can't find any other cause for muscle/skeletal pain. But pain is pain,, and meds are needed! I got things to do, Doctor,, got no time to be sitting around belly-aching! Give me something to get me moving.
Momine: does your cousin have X-rays or MRI's to support her pain back claims? Not that I think she needs them, but just saying,,, **look, here's PROOF that I'm in pain** Sadness. Can't the junkies go back to heroin and leave the Vicodin/Lortab/Percocet/Dilaudid for those of us in pain?
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Glennie, yes, she had support. After some excruciting bouts, she finally had surgery for the herniated disk that caused all the trouble
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I have a chronic pain condition which started 18 years ago, first diagnosed as rheumatoid arthritis then 5 years ago a pain clinic changed it to a problem with neural pain pathways opening and not closing. Either way the the medication was the same and the outlook - no cure and here for life, so it really made no difference to me what they called it. The medication does no more than take the edge of the pain that is in all my joints and I have major flare ups in one, two or more places all the time. I have not had a day without pain in 18 years (you can imagine my delight in having to go through 7 surgeries in the last three years for the BC). I have always tried to get on with life anyway and not restrict too much of what I do, though it is getting harder now. When I went to the pain clinic they had nothing to offer me. My GP wanted me to go back last year in case things had changed and they refused to see me because they said I was too high functioning! Thanks, sorry I'm not a basket case - yet - though with unhelpful attitudes like that I will soon get there
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Everyone must be laying low for Pinktober!
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Hey Eli, I've been laying low with exhaustion. I am finally moved into my renovated house. It is wonderful. Even tho I still have napkins stuck in the deadbolt holes above the doorknobs on all my exterior doors. Now I gotta clean out my "old" house and get it ready to rent out. I can't sell because my business is still in the basement and I want to "save" it incase my DS ever wants to move back to his hometown.
Anyway.... boy do I get perturbed at the ads on tv and radio for BC awareness. MY DD even said last week she heard an ad on Pandora that was a phone ringing and the woman answered and it was a doc telling her she had BC. She was outraged. I said I feel like that all the time. One cannot get away from it. Even if we are trying to move on with life...... we are bombarded with Warriors in Pink ads. Of course, if my personal antenna weren't so attuned to everything BC would it affect me so much..... hard to tell, but having my DD say that about what she heard was interesting. Her antenna might be raised pretty high, too.
Pain and docs. Their antenna is so high now for people seeking pain meds it is crazy. I had to do some serious doctor shopping to find ones that listen to me and even then I have to repeat myself a lot. haha
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Hey, mac, I won't say you are too old school, but you need to ditch that personal antenna and upgrade to a personal pink satellite dish now. I fear you might be missing out on ALL the Pinktober transmission signals this year. You don't want that now, do you? Seriously, tho', you just could not beat that lovely bay view from your old house...please tell me you did not have to give that up!
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**trying to not look at ads*
One of my neighbor's had a health crisis this week. We had to call the EMS to break down the door to get her. Initial diagnosis was pneumonia,, although she had significant mental confusion and diarrhea. Well the cultures came back today and she has Legionnaires Disease. Wondering if it is in her AC system,,, the neighbors and I were in her house for a couple of hours cleaning it.
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I am super tired lately, between having a lot of work and a sick husband. The only good news is that I get to go on a trip with my job. I have already lined up babysitting for DH and for my dog while I will be away.
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Hello I am 45 and recently separated from husband...I have friends and family close but they can't possibly understand what I'm feeling the way many of you can...I need friends that understand what I've experienced and that can possibly share advice on how to cope with so many issues at once... I want to be happy and enjoy the rest of my life but often I feel so sad and exhausted and extremely frightened of recurrence. I just began working in a very physically demanding job. I thought that I could handle it but now not so sure... my back and joint pain is excruciating at times and I feel like I will crumple to the ground..I am alone much of the time but it is by choice... I want to break out if this depression and start living again. The pain of cancer and impending divorce has crushed me...please help...I take femara and if anyone could offer advice on meds or supplements that could ease my joint pain I will be eternally grateful. .thanks for
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tg1203, welcome! There is never any good time to get BC, but you are right that it can feel all the more crushing when you have other stressful events going on in your life. I cannot comment on the back and joint pain, never having taken Femara. I hope someone here can address that specifically for you.
I will say that chemo really takes a toll on muscles. I am older than you are and active but I don't feel like I have fully bounced back, even 2 years out from my chemo. What your brain remembers your body being able to do prior to chemo may not be reality anymore. I guess time will tell if you can handle your job or not.
You did not mention if you are taking any meds for pain. If not, it sounds like you need some. BTW, I'm a real less is more person when it comes to medication, but I don't think people should just suffer through pain either. If you have mentioned this to your docs already, they should be addressing it. (Although, we have just had recent posts on this thread where the docs have become tight-fisted on dispensing the scripts for pain medicine, I do hope you are able to get something for relief) The same can be said for depression. It is so NORMAL for cancer to get anyone down, but no one want to be down in a funk on a continuing basis. If you truly feel you can not break out of the depression, you may have to get chemical help with that also...maybe short term, at least. You have already done one thing that can help with depression and that was to join this community, because you are not alone here. We don't all have the same cancer, but it has affected almost all of the lives of people posting on these threads. Life does not stop when you get cancer. It stops when it stops. Until then, everyone is trying their best to get through their BC or live with their BC. What more can we do, really?
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Thank you for your reply... I am.in the middle of reconstruction of my left breast right now and have an expander in... I'm taking a half of a Lortab at lunch but doesn't seem to help..I only have those for now as far as I know and I will mention It to my oncologist n November after bone scan . Really nervous about the scan I know that my bones hurt and am terrified of the results... I take osteo nutrient pro and potassium and vitamin c jw if there is some other supplements I should consider ??
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tg1203, Let's see if anyone here responds about Femara. If not, find a thread about Femara and ask your bone pain question there. I know others have mentioned bone pain on different anti-hormonals, so maybe it is a SE? What is the location of your mets? Are they all bone mets? I know those can hurt, and they are often discovered when a patients presents with pain. It is going to be hard waiting a month to see what is going on. Try not to let the anxiety take over. Maybe make a conscious effort to do stuff that you enjoy. You have to be stubborn and not let BC spoil everything for you, ya know?
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tg1203: I did 5 years on Femara. Coming up on 1 yr anniversary of no longer taking the evil pill. I was fortunate in that my side effects were fairly minimal. The main thing I found out that helped me the most was switching to taking it at night just before bed. When I took it in the AM, by lunchtime I was exhausted. I lived not too far from my job; I would drive home at lunch, lay down and fall directly to sleep. I had the alarm set for just 30 minutes, but it helped a bit. Someone on the Femara board suggested taking it at night. I started that about 6 months in, and honestly, it was the most help of anything I did. If you take a statin there could be some adverse stuff going on with Femara-not for everyone, but some folks have trouble. I had random bone pain periodically all through my 5 years. I had a standing script for Tramadol, which isn't that that huge of a pain reliever, but when I needed it, I reached for it. Some of the other gals swore that Effexor helped them - I never tried that as I felt like my symptoms were managable most of the time, once the pesky fatigue got taken care of. Hope you can get a handle on it.
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tg1203--the joint aches are a side effect of all the drugs like femara. I took arimidex, had the joint aches and pains, but not as badly as you. Taking loratadine, an over the counter allergy medication was a huge help and has been for many women. Loratadine is the active ingredient to look for, also make sure the package says "non-drowsy" formula. Another option is to talk to your MO about switching from femara to one of the others in that class. Many times a woman can tolerate one but not another of those drugs.
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Ever since my mammo squishing in Aug., my treatment side has been twinging and itching, like the lobes, ducts, and nerves are irritated. My treatment side is a delicate little flower now; and yes, every twinge makes me think I am growing something evil in there, but I know it is what I always write to others: the ravages of radiation, the gift that keeps on giving. Arrrgh!
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Hi everyone! Glennie, what you said, "I got things to do, Doctor,, got no time to be sitting around belly-aching! Give me something to get me moving." EXACTLY! I went through all this torture so I could live my life, not sit around watching time/my life go by when I have so much I have to/want to do. So just give me the stupid pain pills and don't make me pay for someone else's abuse! AARGH! Wait... that's what pirates say. I can't figure out how to appropriately express my scream with letters.
But anyway, Emory did come through - in a small way - but it's better than nothing. They gave me Hyrdrocodone 5-325. So, I'm glad it's the 325 mg of acetaminophen BUT the 5 part doesn't touch the pain. She gave me 15 of them (I guess so I could split them if needed) and that's plenty until our next appointment in a month. First time I took 1 1/2 and the other day I took 2, which I don't like because that doubles the acetaminophen and like Elimar says, we must love our livers. But I've found that once I stopped the pain I got a reprieve for several days. In fact, it's been since Sunday that I last took 2 pain pills and I'm still okay. Before, when I would ask those doctors for pain pills, I was having non-stop high-level pain every day. Sigh.... I guess pain is subjective and we won't have a diagnosis until I get the spinal MRI so I'll try to stop being a smart ass in the meantime. It's hard not to be a smart ass when you don't feel good and the doctors are being intentionally obtuse.
SuzyBlue - so you're being denied pain medicine for pushing through the pain. What are we supposed to do? I wish there was someway we could momentarily transfer our pain to their bodies and watch the look on their face - WHOOMP!! There it is! ... okay, here ya go....
I had to go to my MO today. It's amazing how it (anxiety, fear, stress, etc.) still hits you as the day approaches. She told me two interesting things I want to pass on. First, she was not happy about my 71 level for Vitamin D! She said at those levels it can hurt your kidneys and cause kidney stones, etc. Cancer is the most damned if you do, damned if you don't experience I have ever known!
Second, she said there's a new test where they can submit your tumor and see how much the anti-hormonals will benefit you in the years 5-10. Now THAT would be useful information! The TAILORx trial was a lot of hoopla for very little new information. However, she said you can still show up in the "moderate" range on this test, too, so back to the same old problem.
Elmira - my "good" breast has been hurting the last few days and I told the doctor about it. She searched around and didn't feel a thing. So while we KNOW it's nothing, we don't really know. So, several hundred dollars later, I know this pain is nothing. I guess it's worth the peace of mind. And don't say she could have missed it! AARGH!
Ahhh, nice art up there in the header! Reminds me of my hippie days. Just need some Pink Floyd and marijuana and I'm all set!
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HnS: woo-hoo!! You got some meds! **happy dance** Yes, great that once you get the pain under control, you can be out of pain for a while. Getting ahead of the pain is key. They are available as 10/325, so if you find you need 2 to keep the pain at bay,, ask for the 10/325 next time, mentioning that you don't want to stress your liver with too much acetaminophen. When will you get spinal MRI? And where is your Vitamin D level supposed to be? Dang, I've been that high before, although I think it was 59 last time. Bring on the Pink Floyd!
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and the pot! it's legal here now!
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Hello, I'm 55 and just finished my radiation treatments on Tuesday. I am in terrible pain and struggling with moist desquamation. I had to take time out of work to take care of myself and let this heal. I live alone and it's been a challenge getting through this alone. My family is a 45 minute drive away and they help when they can. My RO gave me a Rx for Percocet on Tuesday. I didn't take any Percocet this morning because I felt a little better, but now another inferno blast has arrived. I should have taken the meds just to keep ahead of the pain.
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meezers3 - if you call the center where you received your radiation, perhaps they could recommend some community resources that could provide a brief period of in-home assistance? Or perhaps the local chapter of the American Cancer Society? A little home health aide or nursing? I will think good thoughts for you.
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FYI-Documentary Starting Oct 13
https://go.thetruthaboutcancer.com/?ref=11dda4ac-ad59-4e17-9582-491167b05d63
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I saw that Loral I don't like that they want my name and email in order to see it. Edit to say I just hit the web site. It's not for me.
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Hi everyone, I haven't been here in awhile. Life is crazy busy. Hope my friends are doing well! If anyone has tumor marker tests done and have had them go up just out of the Normal range could you please message me! It is really messing with my head as they have been normal since chemo and now they are not.
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I come here today to apologize.
All you ladies with your blood draw/needle stick fears, I write to you. Over the years, quite a few posted on how they hate the blood draw because it was just plain difficult. I wrote polite enough responses but, secretly (not being afraid of needles myself) I thought, " what are they going on about? Why the drama?"
Well, today, I sit with 4 different cotton balls taped to my arm and can type, "I get it."
I still don't have needle phobia, but ever since my chemo finished up--two years now--I have been a hard stick. I thought the first few times were just abberations or that I had an incompetent nurse/phlebotomist. Oh no, something about my cancer treatment, maybe the weight loss, has given me wiggly and elusive veins. Or maybe it is age and that my estrogen-loving collagen has all but disappeared. Whatever. I owe you poor human pincushions an apology, and here it is. I M U now.
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On a related note: The above was just at my PCP for some routine stuff and a recheck on my slightly high blood calcium that I had at my last MO check. I asked for (and got) a draw for a side order of parathyroid hormone. Those are related. I did some VERY interesting reading on the subject. Allow me to share a link below. If you have, or have had in the past, a high calcium(*) level in your blood, please take the time to check this out!
I am now on the edge of my seat for a few days waiting for my new numbers. Besides my high blood calcium, I found it extremely interesting that parathyroid disease has links to both BC and CRC. How could I not follow up on this?
(*) Spoiler alert: I should add that the "normal" calcium range can be 8.5 to 10.5; HOWEVER the website I linked to points out that this value is not age-adjusted and no one over 40 should be above 10.0.
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Dianarose, First and foremost, since the change was slight, investigate whether the same lab was used. Even if not, you know there are things other than cancer that can elevate a marker slightly so do not jump into the whirlpool of fear. How often are they doing your TMs? I would imagine it is maybe every other month or so. If nothing else goes awry, you will probably just have to sit tight thru' another TM draw or two to see if there is an upward trend happening. You know the drill if the numbers continue to climb: a scan, revised treatment, etc.
All of us "regulars" remember you well, so keep in touch and let us know what you find out. Also, are you strictly baking for fun now?
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elimar! I am so glad you found that site! I had been looking at it last winter, (and crap! Forgot to bookmark it, so I am glad you found it and brought it here!!) and wondering if that might be going on with me. So, I am going to see my doc (PCP) in a few days for the results of my blood test. I asked him if he would check my thyroid, he said he would, but I don't know if that is the right test he did, I won't know till I see him on the 16th. Because I have so many of the symtoms, and I am surprised no one had thought of it for me. Especially the increased bitchiness part, but fatigue, bone pain, bad sleep, all kinda stuff. But, since I only see pcp once a month for refills etc, right after I saw him last time I have developed this hard bump in my neck. And I saw bs a few days ago, and she kept forgetting to feel it. dammit. It is really bothering me, it is making my voice do funny things, so if my tests are normal, then I am going to go to my ENT, maybe he will do further tests. I am not sure which blood tests my pcp ordered, I have to wait and see. God, I would almost love it, if thats what I have, it would explain so much.
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