INSOMNIACS place to talk in the wee hours
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MOmmyof2 Happy Anniversary !!!
I'm a lurker as well. I enjoy the diversity of the posts. Kinda like a box of chocolates, you never know what you are going to read lol.
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Happy Anniversary Mommy. Do something special.
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The one thing we did that was special was go out for dinner. We went to Pepe's Pizza, its a place that is very well known here in Connecticut. The original Pepe's is in New Haven. All the pizzas there are done in the way that the founder made them.
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Happy Anniversary Mommy!!! May you have all the right answers to build each other up and may you never be like these two:
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Goodness grief where has the time gone? Fuzzy head now. Can't concentrate or remember things these last few days. Darn sinus!
Hope everyone is doing ok.
Egads, the Paleo thread is taking off. Wow! Lots of reading to do. Thank you for sharing. I would need to do a major confession if I jump in. Ay!
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Because of the fractures I've been experiencing in my lumbar spine over the last several months my MO ordered a Bone scan w/ a Spec CT. The scan was last Thursday and now it is Tuesday evening and I have not heard a word from my MO regarding the results of this scan. Waiting is so anxiety inducing.
Also, I had my appt. with the dentist today and he did the prep. & placed my temporary crown. The permanent one will be ready by the 28th of June. Unfortunately no diamonds or rubies! Go figure! Anyway, when I went to the dentist today I had zero anxiety about it, but as soon as my tush hit the dentist chair, it was so weird, I began to have a sense of nervousness and dread. Then when the dentist started drilling on my tooth the sound about put me on the ceiling. This reaction really surprised me. About halfway through I had to take some alprazolam, then I did better. The Novocaine has worn off and other than a little roughness of the temp crown all feels good.
Tomorrow (6/13) I am going to the movies with my movie buddy and we are seeing "Oceans 8".
Loverly - So good to see your post! Sorry your having sinus issues. That makes life quite challenging.
M0mmy - Glad you enjoyed your anniversary & the pizza. I am sure gonna miss pizza now that I am doing the Paleo thing. Toppings without a crust just don't seem as inviting. I know there is a cauliflower crust that can be substituted, but I'm not really sold on the idea so far.
Anyway I am off to bed, so I will bid you all a restful night.
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For sleep...I highly recommend the Podcast "Sleep with me". I have been using it ever since being dx'd with breast cancer and I have a Pavlovian response to it now. The minute I hear the guys voice, my eyelids get heavy and I am soon asleep. It may not work the first - third time you try it but it will work.
Best of luck and sleep well!
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Lover, you hit that one right! Hubby and I love each other deeply, faults and all!
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Happy Anniversary.
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Mommie Happy Anniversary.
Charger, pop in an post once in awhile. Knew you were there.
Loverly, Hey
The Paleo is so good, I just don't want to think dieting right now. But at least not gaining. Schatzi seems to be doing okay on the Prozac. We are having storms almost every night. Her anxiety is less. Have you texted with Shep?JUnie sorry you had tht bad experience t the dentist. They are never fun. Never. Call me when you get your results
Real quiet here. Not much going on.
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DS and SIL played Nora Jones' first record to put their 1st child to sleep. To this day I cannot listen without falling asleep.
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Sas: well, lots going on for me, just not anything to do with BC so shy about posting it. Mostly school-related.
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Oh, on the good: I didn't end up getting called in for jury duty. Not even the pre-questioning stage, like March of a couple of years ago.
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Bone scan results are back and it appears that my BC is no longer stable. I see the neurosurgeon on Monday, so for now I do not know what is next for me. THIS SUCKS!!!!!!
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Hi Ladies
Junie, I just sent you a private message. Sorry about the results. I asked about your scan in the message, now got the answer. Thanks for keeping us posted. I know bone Mets can be highly managed, and treatable.
Loverly
Love that pic. Funny. I haven’t been posting in awhile, but I always lurk. How is your daughter doing? Things were a little rough there. I also have short term memory loss. I think it’s the tamoxifen, however, I heard that is not a side effect from my onco.
Someone tell me what they know about side effects from tamoxifen. So tired of reading, and hearing different things. I trust more hearing from you ladies.
Mommy
Happy Anniversary, may you have many more wonderful years together.
Sas
Have you been in touch with Mags? How is she?
Also, anybody know how Patty is? What about Shep?
Hope all is well with you ladies
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Jaymeb - I am so glad you posted and that you are staying busy. That has helped keep me going for the last 3.5 years.
I got a message from my MO's office this evening that she finally got to speak with the neurosurgeon today. Apparently the neuro will discuss my options on Monday, but one he did mention was to remove my whole T11 vertebrae. But I have no idea how my spinal cord would then be protected or what the risks of paralysis or loss of function of my bowel & bladder are. So I get to sit here for the next 4 and a half days scared out of my mind and imagining what my life will look like from here. It's not pretty what is swirling in my brain. Plus it didn't help that I just had to Google the description of a Thoracotomy surgical procedure. I should know better.
Anyway, I'll say Goodnight to all for now.
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JunieB, I have no words of wisdom or advice on how to deal with the long wait. Just breathe. And know we are all thinking of and praying for you.
I called my mom last night. She is a BC survivor for 25 yrs now. I asked her if when she was on Tamoxifen she had the terrible leg cramps like I have been having lately. She said she sure did and eventually got some relief from muscle relaxers. I already have a script that I got filled yesterday. Tomorrow I go for labs, I think my MO wants to check potassium and magnesium levels. I didn’t take one tonight, so here I am at 3 am, struggling with my legs. I have to work in the morning before going for labs so I don’t be want to take one now as I know it will knock me out and I won’t be able to function in just 3 hours when’s I get up
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TaRenee, muscle spasms and cramps a common SE of Tamox, For me it was the muscles across the shoulders, couldn't even sit in a chair without going into spasm.Actually bought several new chairs before figuring it was the tamox! (It was talking to a lady whose Mum had had exactly the saem that pointed me in the right direction, and saved me wasting any more money on chairs). Happily I was at that in-between age where either tamox or AI's would be appropriate. Got switched to exemestane to see if it would help the brain fog (another common hormone therapy SE) did nothing for brain fog but muscle probs ceased instantly hi hip hooray.
JunieB
Edited to say PS for some reason I can only make the Ta in TaRenee be bold, and not at all on Junie
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Afternoon
LOverly. I spoke to soon on Shats and prozac. I got your message. It was a no sleep night. Thanks for the chattering descriptions. I held the dose. Perhaps not a smart move. But I will wait for your call.
Junie, hugs. Call when you need too. Like I said last night I've never heard of a vertebral removal. Ever.
Queenie, I'm about ready to break down again and go for a new computer. This thing is just to frustrating. Touchscreen is n't working again. Last HP fix for running slow, must have wiped out the driver again.The lov or lo something sounds good. So what's up? Last you posted you were enjoying tutoring.
Tarenee. I started on the AI's in April or May 2009. Many here on BCO were talking of uncomfortable to horrible muscle bone and joint pain. Brain fog. Flashes. I quit the Arimidex end of Nov.2009. Years later I found out about an alteration in my metabolism. Now, I likely would be given a lower dose.
But what was key at the time was my MO said none of my symptoms were related to the drug. Somewhere within the next months, I heard an interview with one of the main researchers from U of M in Ann Arbor, Mi. I still have a strong visual and auditory memory of it. He stated that the complaints of the musculoskeletal pain was not something that they saw in the clinical trials, but since there had been so many complaints of it, they would have to go back and take another look at it. NO SHIT SHERLOCK. was my reaction. I know your question was about Tamoxifen. But ALL drugs have consequences.
It comes down to cause and effect. If you previously had no symptoms and you develop symptoms after a treatment change than consideration of the drug being involved in the cause of the symptom change has to be explored.
Once I sat with Phyliss and we reviewed her drugs in depth. She had two that were consider 1:1000. She got the drugs changed. But till that point her docs didn't consider a drug relationship. Doc's and nurses tend to know most common s.e.'s. Plus, reports of s.e.'s after a drug is approved can take a long time to be reported to the wider medical community. These are called After Market reports. Often several years. For example, Vioxx was in the marketplace for several years before the connection was made with it's problem of causing strokes. It was pulled off the market. Another drug Darvocet was in the market place for maybe 30 years(?) before a connection was made with it causing heart rhythm problems.
Another consideration that is not applied well is Polypharmacy. Generally, described as 2 or more drugs. Drugs can have minor s.e.'s, but when you add them together those minor s.e.'s can become worse. That's why I encourage the use of a drug checker. I use YouScript < 30 dollars year. Money well spent.
The first Axiom of Medicine is do no harm. An old teaching doc's second axiom was "If you listen to your patients they will tell you what's wrong."
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Jaymeb, Last I talked with Mags was Monday. She lurks too. Maybe she will pop in
. Maybe I will call Shep. I know they have been crazy busy, but perhaps she will have time for an update.0 -
Found out abbout a couple three patient assistant programs b/c of my macular stuff.
Gooddays Foundation......... no funding for BC this year, but may have drugs or other condition's that are covered
Patient advocate Foundation---it's a very extensive web site.
I've posted in the past about Need Med.org. Needy Meds is a great clearinghouse, but I have found it's not easy to use. It takes patience.
https://greatnonprofits.org/org/needymeds
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Talked with Shep. They've been in the house since Friday. Delayed in getting in. Ellie Mae is back with them. Yay bladder control has kicked in. Miss Pris is doing well, acting like the princess of the house. Work on the house is going slowly. Only uncooperative people so far are the cable people. They want them to pay for the cable box(es) and routers before they will put them in the rental. Insurance would pay, but it would take awhile for a check. Shep went to ER b/c of her hip. Doc gave her Toradol. She got some pain relief. She goes to Charleston on Monday to see the ortho doc. We had to cut the call short b/c Ellie got out and was on a run. Puppies!
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Sas: wouldn't "touch" a touchscreen for the world, not for my own computer. I smutz up a regular screen and keyboard bad enough, that I don't want to add touching the screen to the mix.
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Queenie, I like to sit on my couch or bed with my legs up for comfort and to prevent lower leg edema when I'm on here for too many hours. Using a m ouse is very difficult. Using a touchpad is difficult b/c at least the HP is not very sensitive. My fingers hyperextend, the middle joints get sore. Always sumpin. I was nicely shocked when my machine was upgraded from 8.1. to 10.0. And it had touchscreen.I love touchscreen. It's so fast. Less wear and tear on my fingers.
I recently went with the HP tech repair folks as my IT company. Their phone number went to Fescu(sic?). Mixed bag on repair. ut I keep getting robo calls from them trying to sell me something. I keep thinking I should call corporate to complain. What do you think?
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Yes, do complain.
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TaRenee - Ever since I have been on Faslodex I've experienced leg & torso cramps. Last year some time I read an article about this and I started taking a Vit. B complex supplement, plus a Magnesium supplement. Amazingly the cramps have pretty much disappeared. In my mind so much better than the muscle relaxer because the supplements don't make me groggy the next day. I use the B-complex & Magnesium L-threonate by Dr. Mercola @ mercola.com. They made a huge difference along with my other supplements from Garden of Life, like their Raw Calcium, multi-vitamin and vit. D3.
Sas - Last night after we spoke I went to the Ibrance thread and read a post by one of the ladies that said that she has a friend who did have a vertebrae removed and replaced with a cadaver vertebrae. So I will for sure be talking to the neurosurgeon on Monday about this. When I read that it was like a light bulb went off in my head because it reminded me of the fact that I have a cadaver bone in my left hip from when the Mayo Clinic reconstructed it from the Chondosarcoma.
Also, today I had an appt. with the vascular surgeon and the superficial blood clot in my lower left leg has increased in size greatly. The original area is now about the size of a half dollar coin, plus it has spread up to the lower left thigh. With everything else I am dealing with this doctor prescribed a blood thinner along with my compression stockings. I have to speak to the neuro though before I start taking it, since I will likely be having surgery soon. The vascular doc is concerned that this blood clot could end up going to my deep veins too. Oh Great :0(
I soooo DID NOT Paleo today. As I was walking to the bus stop from the vascular doc I had to pass a local restaurant that is known for its scrumptious handmade 4 - 6 layer cakes in many flavors. I almost made it past their door, but caved and went inside and had a piece of their yellow butter cake w/ a chocolate ganach filling and espresso butter cream frosting. I don't even want to know how many calories I consumed. Thankfully tomorrow is a new day.
Just make sure no one tells Egads! Shhhhhh!
Also, here is the pic of the red wine glasses:
Feline - Thank you!
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Junie....too late lol
Seriously, I’m glad you went astray yesterday and hope you enjoyed every mouthful guilt free...you sure as heck deserved it! There’s always a new day and your cave peeps are always here to help you jump back on the wagon! Right now I think being kind to yourself is important. You just needed a big carb hug, glad you got it!
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Sas: then clearly a touch screen is for you. we use our computers in different ways. (I don't have issues with my hands, I normally work at a desk, blah blah blah.) Oddly the touchpad on my HP is fairly sensitive. Go figure.
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I've discovered the touch screen on my iphone is touchy when my fingers are cold. Perhaps not a problem in FL.
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Ugh.... just found out that I am going to be hiding inside all day on Monday. We are supposed to have highs in the 90s here. Heat index is going be in the 100s!!!!!
Gonna feel like the Wicked Witch did when she got nailed by the bucket of water in the Wizard of Oz! lol
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