MIDDLE-AGED WOMEN 40-60ish
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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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omg,, Elimar,, I'm glad you found that site too. I am going to my endo on Thurs to check my thyroid nodules. After reading your post,, I pulled out my labs, and my calcium level is 9.8. It is not "high", but last year it was 8.9,,, so is that a concern? You can be sure I'll be asking!! Cuz it would explain my fatigue and crankiness,,,, of course, surgical menopause might explain it too, but I digress,,,, Thanks for the link!!
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glennie19, I have a nodule on my thyroid also. I don't know what that nodule is. Still, no one ever indicated that it was an overgrown parathyroid, so I don't have reason to think it is but I may go back and pose the question. Never hurts to ask, so go ahead and see what you can find out about yours. Going by what that website had to say, 9.8 is a good number...we are supposed to be 9.0-10.0 in our best health. Also, the thyroid and the parathyroid are horses of a different color. A problem with the thyroid can also be the culprit of fatigue, but that level can be checked also.
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elimar: I have 4 nodules,,, 3 of them are nice and round and benign looking,, the 4th one is iffy. We decided to repeat ultrasound which is this Thursday's appt and see if any change,, and we'll go from there. But I will ask if any significance of my calcium level being close to 10,, and if she thinks repeating labs for both thyroid and calcium would be good idea. Maybe repeat in 3 months or something,,, I realize they are different organs,, but it never hurts to ask, as you said.
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Elimar- I have the tumor marker every 6 months. It was too stressful to do it more often. Yes I am baking just for competition now. My hubby competes too. He has kicked my butt several times. I keep giving him my good recipes. We have won a lot of prizes and money too.
I hate needles. I can't watch. My doctor prescribes me numbing cream. I put it on the one good vein I have an hour before and I don't feel a thing. No fear anymore.
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Very good idea to get your thyroid checked out. Just to let you know that I had lots of nodules on my thyroid and had to have removed 5 years ago. Still have the para thyroid. So every year thyroid blood tests. Not to scare anyone, but they did find low grade cancer. I was lucky/blesses not to have any treatment besides a year of getting levels normal again.
Wishing all the best.
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So, it's Pinktober, right? I decided I would spend a little more time on BCO and do some outreach to Newbies just diagnosed or those waiting for a Dx. Boy, it is hard to read all that panic. I remember it well.
What strikes me is that there are so many questions and the providers must not be answering them. My own Breast Center gave me a big notebook. Twice as thick as a Steven King novel (like The Stand, not Carrie) and five times as scary. There is so much to know. I bet if every cancer center had a hotline for questions, that phone would be ringing off the hook.
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.....And why DON'T THEY??!??
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Yes, because you can only remember to ask so much in your OV, and the doc does have other cancer patients besides you, so it would be nice to have someone knowledgable to field the questions as they come up. It's one of the reasons that BCO is so popular. People are looking for answers and they want them NOW.
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I didn't get big notebook. I actually got zero information. Had to look everything up myself. Maybe cuz I'm a pharmacist, they think I know everything,,, not!
I have to admit I have envy of those whose MD's will take email questions. That would be so handy.
BTW: Elimar,, I saw my endocrinologist today. She says not to worry about parathyroid unless calcium level is over 10.2. Mine is 9.8, so I was worrying prematurely! And my thyroid nodules are stable,, so that's good. Back in 6 months,,,
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BTW, glennie19, I have to say "I told you so" that 9.8 was a great calcium level; plus you know better than to worry prematurely around here because we have enough actual deserved worry to keep us busy.
My calcium has been 10.1, 10.2, 10.3 ad 10.4 (not necessarily in that order) and that website (link on previous page) claims all are high readings for those 40+ in age. This is why I felt a PTH test was in order. MO's office was all for the old "wait and see." The docs from the parathyroid.com website were all, "don't fall for the old wait and see." I'm still waiting for my results, and I'm ready to deal with any kind of result but really, really, REALLY, hope they don't have any weird ambiguity to them. That is the worst. So, keep your fingers crossed for me that I get a definite answer.
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**fingers crossed for you***
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Crossing my fingers too Elimar. You don't need anything else.
I too had to do my own research. I kept reading about people who had a "nurse navigator" or a group. Not for me - although I did demand a tour of the infusion rooms the week before I started. This site was & is a wonderful thing.
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On a different note...we never thought the day would come BUT I HAVE FOUND A RIVAL FOR CHEETOS.
Before all you Healthy Hannas jump me, I know that I am still talking about a highly processed food, but it is lower in fat, sodium and calories than the little orange wonders. It's gluten-free and has some protein coming from actual legumes. I'm talking about SNAPEA CRISPS, and they are yummy. I saw them at a health food store (not that that makes them legitimate!) but they are also nationwide at your local WalMart. I like the Caesar ones!
We can all take our icebuckets into Hell now. It surely must have frozen over.
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We have the black pepper here. They are pretty good. Kinda salty for my but my kids love em'0
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Guess I have to report the blood test results since I gave it the big build up. Well, my calcium was 10.1, and the PTH was in the upper end of the normal range. According to the parathyroid.com website, that is not normal. According to everyone else, it is normal. Ambiguity! Just what I was hoping would not happen. That means I must read, read, read and try to figure it out.
Already I have come across conflicting info. about now taking Calcium with D3 supplements. Some say should, some say shouldn't, given my blood results. I don't want to get it wrong.
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Yep, I have some results that aren't normal but the Doc says it's my normal...Go Figure!
Happy reading.
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UGH!! Booooo on ambiguity!!
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Normal = not worth bothering with
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Elimar, iIt's so very frustrating to think you are doing things right, then to find out that not everyone agrees.... Sorry to hear you're dealing with that BS.
I haven't been on in a while. Sorry I've not been here to support you ladies and to keep you updated with what's going on with me. Maybe someone can benefit from my experience.
I'm one of the second-time-around gals. My first tumor was found at my routine mammogram. I was stage 1, hormone receptor positive. I took tamoxifen for about 1 year, then started having uterine problems, so I had a hysterectomy about a year and a half after the cancer diagnosis. I was cancer free for 6 years after a lumpectomy, sentinel node biopsy (2 nodes - both negative) and radiation. Then, this past March they found a tumor in the same breast at my routine mammogram. Lefty is definitely trying to kill me....
So, I had a unilateral mastectomy in April 2015 and had a tissue expander placed. It was stage 1 again, 1 node (negative), and I'm taking Arimidex. The radiation caused all kinds of lovely issues, as many of you know, so we had problems getting the incision to heal right. (Plus I pushed it a little too soon and played softball...ripped a 1 1/2 inch section of my incision open. Oops!) In June, a few weeks after the softball episode, the tissue expander had gotten infected, so we removed it. I kinda missed the little magnet - it was funny sticking things to it! I never even got a single fill, since we were trying to get the radiated skin to heal right. Even after the tissue expander was removed, I had issues. My last drain lost its suction, so I had to pack my open wound and leave enough medicated gauze hanging out that it wicked the fluids out of the wound. Oh, well....
I did come upon a treatment that really helped that pesky radiated skin. I had been going to physical therapy for my knee and they were doing a soft tissue treatment called Astym - it's designed to deal with scar tissue and promote blood flow, which in turn promotes healthy tissue growth. So, I decided that ex-Lefty should get that Astym treatment, too. It was 10 treatments (2 per week). When I started, the scar was prominent, and the skin was adhered down to the muscle and bone and didn't move. Now, it moves, it's soft, it looks like skin and I can even feel some. I highly recommend it for anyone with the same issues I have been dealing with as a result of the original radiation.
My reconstruction is 2 weeks from Wednesday - November 4. I am having DIEP flap reconstruction. I'm pretty excited! I LOVE my plastic surgeon - he is AWESOME!! I've been getting iron injections (IV) and have to start giving myself Lovenox injections next Wednesday - it's an anticoagulant. I hope I will dodge the bullet on the whole clot thing, since that seems to be the major complication from the DIEP flap surgery. Well, that and the recovery for the incisions on the 2 parts of the body.
Well, sorry to have written a novel. If my situation and my experience can help anybody, just give me a shout out. Thanks to all of you lovely ladies for sharing your experiences and for being so great about being here for one another.
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Thanks, bg63, for mentioning the Astym. That knowledge can be passed along to those trying to overcome healing/scarring issues. I had always known that ultrasound therapy helped with softening up scar tissue, but it is not allowed with anyone who has grown a cancerous tumor since it does stimulate growth of tissue. The Astym must be different since they allowed it.
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