INSOMNIACS place to talk in the wee hours

sensitivehrt

Jumping into the conversation too. We've had a history of thyroid cancer in my family as well. My mom, my aunt and cousin on my dad's side. I had my thyroid removed in October due to possible Hurthle cell carcinoma, thankfully it was not. 3 months later got a DX of BC. Lots of other cancers in my family as well. Colon, lung, ovarian and a two BC.

Oregon is beautiful. Thinking of making a quick trip out there to see a friend who has been thru BC, before my surgery.

Have a great week everyone!

Anonymous

Sas, The story of my spine......I will carefully phrase some of it so as not to show in an online search.

I have a moth eaten spine from all the bone mets. From the base of my skill to the tip of my tailbone. When first dx'd 3 years ago I was immediately given a brace as the Ortho was afraid my lower spine was going to collapse from the damage that included a fracture at L2. My MO is at one of the top cancer research centers (NCI Designated) and I have an outstanding team. I was started on monthly Zometa infusions right away which has helped strengthen my bones a bit. I had a round of rads to my spine, pelvis and hips that first month as well. I had been in a wheelchair in the beginning but after 3 months of treatment I was able to walk with a cane.

I had a procedure last spring that involved the placing of cement into that fractured vertebra to stabilize it and relieve nerve pressure. My surgeon is considered to be one of the best in his field. There were two devices used to put the cement into the vertebra; one on each side. One came out just fine like it was supposed to. The other snapped apart and no matter how he tried, the surgeon could not pull it out. It is lodged in the middle of the vertebra and cemented in place. It sticks out of the bone by a few millimeters. The only way it could be removed would involve cutting the bone apart.

The metal used was not supposed to be left in the body so it is not composed of materials that are MRI safe. Lucky me, I am the only person who has ever had this happen to with this procedure and tool.

I have had numbness in my one of my arms for about 2 years. Some of it comes and goes. My middle finger on that hand is always numb. On that same side of my body I have numbness in the lower leg. my foot is the worst; sometimes it feels like frostbite and hurts! All this is being caused by pressure on some of the nerve roots. I have soo much damage - a herniated disc, disc bulges, degenerative disc disease, bone spurs, pressure from lesions... So much pain every where that isn't numb. Plus I have all the mets in my hips and entire pelvis that all hurt all the time.

Post surgery, I have had CT scans and nerve studies but really need an MRI. The first specialist I saw for all this "passed" as I had more going on than he knew what to do with. (at least he was honest) The 2nd guy was an Oncology Neurologist; again more than he could handle. He did refer me to a Neurosurgeon who specializes in difficult cancer and spine cases. That is who I'll be seeing Wednesday. I don't want to get my hopes up and am stressed that this may be my last chance at getting some relief. Narcotics/opiates have no effect on my pain and only make me vomit.

I do have a legal person regarding the thingy where it doesn't belong. The person has been involved since August and nothing seems to be happening. I very little confidence in him.

That's the story......... Your opinions and advice would be greatly appreciated

JunieB

Shepkitty - Thanks for the hugs. Very appreciated. I personally love your spunky attitude. Mine gets me into trouble at times, but that's their problem I've come to realize. Depending on the circumstance I am either stubborn or determined. Depending on who the other party is.

Wow, reading your story of your journey thus far, you definitely have to be determined. How in the world do you get through a day without pain meds? When my pain isn't controlled, my anxiety gets high and I get cranky. I am allergic to Morphine & Dilaudid and the thought of not having meds for pain scare the heck out of me. What I take right now I take the lowest dose that gives me control so as to not build up a tolerance for as long as possible.

I was aware that there is home health care for people after surgery, but didn't know that there was extra help for cancer patients. Thanks for the heads up.

I certainly hope your appt. on Wednesday gives you some answers and hope.

Also, I second Sassy's question. What was Marti's dx and can the vet help her?

Susan - So glad your tests turned out to be stable. Thanks for sharing your pics of the shower. It looked like a great time for all.

Loverly - Now it's my turn to wonder where you are. You usually post every evening. Hope your doing o.k.

Well it's after 2:00 a.m., so I'm headed off to bed. Hope I can fall asleep. Goodnight to all.

sas-schatzi

To all newbies to the thread

Insomniacs thread moves so fast, It's hard to keep up. I tend to read all the posts b/c whatever I missed, is in an answer to someone else. They're is only a few threads that move this fast.

If you have the ability to do split screen, it helps in reading for sure. Open two browsers to BCO. Split them 50-50. I type in the posting box on the right and read on the left.. I can be back several pages on the one screen and move forward while posting on the other screen. It's the only way I can keep up. Rare people can remember what everyone writes, not me. I plod along one post at a time

Plus, if you posted to someone and they don't answer, it could be for several reasons. Not everyone posts everyday. So you may not get an answer for a few days. Sometimes folks take a break i.e off on trips, chemoing, taking a BCO break. It may not be that the are rude, they just may not be here. This one is pretty universal to all threads.

What is unusual is they're is a mixed group on IT. Newbies and oldbies. That's very unusual on BCO. They're are a fair amount of posters. It's difficult to remember who's doing what. Threads range from 6-12 members, varies. The higher number is unusual. It's like being at Thanksgiving and everyone talking at once. You can catch a snipet of a thought, but missed the original post and things don't make sense.

Another thing, is you think your caught up and a post appears in a section that you have already gone by. You never see the post and someone thinks you're not answering. I really dislike this one. But it has to do with time. Took me awhile to figure that one out.

Mominator

Thanks for the explanation Sassy. I thought I was rather fluent after about 6 months on BCO, but this thread is at whole 'nother level.

Today is Tuesday, which is my morning to watch my neighbor Lori. Maybe I can catch up with all of you during her naps.

sas-schatzi

Loverly, loved the marble machine. That kid is going to be a great inventor. Loverly, that was me in the reflection. Double chin and all LOL. Had to open a third browser to go find it The wheat: I thought wheat at first, but wheat doesn't have the flower, and it's a definite flower. I tried keywords "signature designs of glass cutters" Didn't pull anything useful. Thinking of your sweetie in Nepal. " OCD will not allow me to have Mitzy in my bed. She sheds too much!' I put a special spread on the bed, that they are allowed to lay on. They are great about it. Unless of course I don't make the bed.

Lookie great pic

Junie, an up and down week. Are you going to rehab after sx? Ask your Ortho doc to set up HomeHealth for the two weeks post op when you get home. Insurance will usually cover 2 weeks for a nurse and 8 weeks for PT. Ask for a nursing assistant. That's the important one. They can come in several times a week for bed bath and light food prep. I just saw Shep's post she's thinking the same thing I am.

Have you had a Social Work consultation in the home to "Evaluate for Services"(this is the order the doc needs to write)? You may be eligible for all kinds of things and not know it. Have your PCP write the order. This is a whole separate issue from Post-op HomeHealth. Strobe effect on the motion. Gasperilla, my son loves it. Tampa St Pete always has so much going on. I'm glad DS is there.

Shep what a wonderful idea on the picnic. I'll be right there

Blessings. Ditto on the PPB's and the can contribute to osteoporosis. I've been on a soap box about it for several years. The Blobs do look like implants---EWHHHHHHHHhhhhh

CB, ah-hah. What dose are you on for replacement? On the D I take 5000 a day.

sas-schatzi

Susan

sas-schatzi

Sensi, real glad hurthle cells were off the table. Sensi, your family sounds a lot like mine. I'll post the color genomics link. They test for 18 genetic abnormalities. The BRCA are two. After my own research I thought Chek 2 and another one were considerations. Erghhhh I forget the other one. AND I forget if it's on the genomics list. CG is only 250.00$. Cheap by comparison to all other companies. If you go there check out the "about us". I thought it very cool that the folks that started it, really did do it to help folks.

Have you gotten through all the reading? Need any help?

susan3

Susie I talk to her via phone. Yes she is going through a dry patch . Prayers would be appreciated for our dear mamma Ray

sas-schatzi

Shep Chit(shit). The easy opinion is change lawyers. Confidence is everything. Sounds like your skeletal system is trying to take you out. I do remember a couple of times with drill bits breaking. Don't remember outcomes. I remember that the first created quite a stir and that with the second it was known what to do. The first time lot's of bosses in the surgical suite talking, Hmm I can see them...............

Check your surgical consent to see if that was a risk that was in the consent. If it was that becomes a hurdle. I never liked ortho cases. It was carpentry. Hammers, chisels, osteotomes, drills, nails, screws, wire.

When it sounds like negligence/ malpractice, I'm the first to say get a lawyer. But was this negligence? Was it forseeable? Did the doc do it wrong? Sometimes we can do everything right and something happens. I had a patient once that I did everything very ritualistic right. But ten minutes after an IV push she was in serious trouble, 10 minutes later she was in ICU. She died that night. I didn't worry that any of my technique had caused harm, but I felt the drug caused harm. Even though she had previously had it. Oddly, it would seem she was allergic, but anaphyllaxsis wasn't the issue. I pushed the oversight committee hard to report it as a drug related death. Their analysis didn't support it. A drug related death has to be reported to the FDA and it's a big deal. I forget what the cause of death was determined to be. If only the time line was considered, the drug or I did something, but not so according to the committee. Of course, the thought occurs of cover up, but nope. The point being hmmmm.......Has anyone indicated it was malpractice? Is that what you are hoping to find out with discovery?

I've had muscle, bone and joint pain my entire life. Post polio. But the recent activity(2013 & forward) with the thyroid has taught me some things. First, I've never had normal thyroid function based on how I feel with the hormone replacement. It still needs to be adjusted I think one more 25 mcg increment. I've had TSH's that always fell within the "normal range".

That normal range is defined by science. Science is wrong. Bitchy, knowitall LOL. The future, hopefully soon, I think a relook will show that science thought they knew something about the thyroid, but screwed up after the TSH was developed as a measurable lab in the 70's. Secondly, vitamin D deficiencies are intimately involved in so much more of body function than even known now. The research on it has exploded in the last couple of decades and will continue to expand.

How both have impacted me? Thyroid dose now is at 175 mcg/day and D 10,000 units a day. (Accepted new dose of D is 5000 units/day- i'm choosing to exceed the dose). My D deficiency was found in 2007. I was on 50,000units/month until last year, 2015, when the dose was increased to the 5000/d with PCP approval. I started on the 10,000/d jan 2016( may be a little off on that.). I haven't told PCP.

The bone pain is dramatically, dramatically less. It is so nice. I felt the change when I went to 5000 units /day>>>then more on the 10,000 on the D. When the thyroid was @ 150/day there was a change, and it was even better on 175.

The drugs were adjusted independently, with enough time in between to not get confused about what the response was i.e which reduced the pain. Between the two, I think I'm closer to normal. I'm not a great judge though b/c I have no clue what is normal.

Bone pain has it's own suckiness. It's gnawing, deep, achy, and continuous. Like a dog gnawing slowly. I also, found that narcs didn't help. NSAIDS did, but I too couldn't take them. I don't know how my words on D and thyroid can help you. I hope they do in some way. For me, this new reduction of pain as a 63 y/o was so encouraging. (now 65). I would have lived out my days with the old pain. I do still have pain, but that deep deep, gnawing, achy,continuous pain is near absent. Sure hope you can make sense of this Shep.

sas-schatzi

Hello Mominator, Your timing was impeccable. It's like we planned it LOL. Did you get through all the Toradol reading? I should go work on the monthly post to the surgery threads. You were in the same group as GrammaX3 weren't you? Did you see the post? Actually, I remember now Grandma was the only one that responded. I felt like an interloper. May be that's why I didn't continue. So, your opinion. Continue to post something similar?

SusieM. I just saw Susans post. Good, we know.

Susan send Mamma our regards and hugs.

sas-schatzi

Found this about 4am today. This researcher(s) identified people that survived into adulthood with inherited diseases that are usually fatal in childhood. Small number of survivors--13. These survivors were gleaned from a total sample of approximately 600,000. The researchers are terming the gene that allows these folks to survive as a resilient gene. Once they find the resilient genes, the next step will be to replicate and insert the genes. Viola! fixed. The implications for all humans are tremendous. It won't be applicable in our lifetimes, but in a future time this will be life altering.

4/11/2016

Why Do Some Kids Escape Terrible Genetic Disorders by Dennis Thompson

http://health.usnews.com/health-news/articles/2016-04-11/why-do-some-kids-escape-terrible-genetic-disorders

Anonymous

Good Morning Y'all !

My definition of "morning" is whatever time it is when I get up and have breakfast.....

Just popping in with a freebie for those who like to read:

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BBL....

Jazzygirl

Hi friends- popping in for a minute during a break at the client site. Not into work this week, but leaving early today for a prof org event!

Sassy- I drink coffee in the am, tea the rest of the day (usually in the ice tea form this time of the year).

Susan- good news that your tests are stable. Lovely family pics! That baby is coming soon......

JazzyJune- NM has a very long spring in the high desert. The fruit trees begin blooming end of Feb to early March and then a whole series of things unfold through until the end of May. Right now, the rest of my trees are coming out and have some buds on my cacti as well. We are going to get some more rain today which we really need.

Sorry to hear Patty is back in the hospital. I hope she is out and feeling better soon.

sas-schatzi

I finally got around to doing the thread info related to Torodol and blocks and opiods. The concepts apply to original BC and any subsequent surgeries. Give it a look and see what you think. The third post is what will be posted for each surgery group. Well apparently the post was still in my fingers.

////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////

Hope you find this information helpful. In 2014 and 2015, there were several threads that looked at 1. specific drugs i.e. ketorolac, opiods, propofol, and other NSAIDS, and 2. surgical anesthesia interventions i.e. paravertebral blocks that may affect breast cancer recurrence either local or metastatic. All the information is Evidence Based Research with links. The intent of this post is to provide you with a link to information that you can study and in turn take to your surgeon and anesthesiologist for discussion pre-op, if you feel it has value in your breast cancer care.

https://community.breastcancer.org/forum/73/topics/843381?page=1#post_4691613

A great starting point is this presentation by Dr. Vikas Sukhatme who is academic dean at Beth Israel Deaconess Medical Center at Harvard. Published on Jan 21, 2016. Presented by Dr. Vikas P. Sukhatme on December 8, 2015 at MIT in Cambridge, MA.

"A Simple, One-Time, Inexpensive and Non-Toxic Intervention to Improve Cancer Survival"

https://www.youtube.com/watch?v=H8zVrYEW8vE&feature=youtu.be

Anonymous

Re: Genetic Testing.....

Post dx I had testing ordered by my PCP using GeneID - Don't know how they compare to Sas's lab?

"The GeneID PrevenTest panel screens 31 genes for 8+ cancers including breast, ovarian, colorectal, endometrial, melanoma, pancreatic, gastric and prostate"

If there is a personal or family history of cancer insurance will cover all or most of it. I have Medicare and BC/BS and it was covered 100%. The "prior authorization" was funny....got a phone call to confirm I had cancer or was at risk and that was it

PCP also ordered testing through Genelex to help aid in finding appropriate medications based on my DNA. The insurance companies want a "compelling" reason to cover it. The customer service at Genelex is outstanding and will help with insurance billing. They even offer help by means of financial assistance (possibly free depending on income) and have payment plans as well. I lucked out as my insurance covered 100%. Test results are given on paper and also posted online in your own private account - interesesting stuff.

sas-schatzi

Jazzy, okay got it. Thanks

JunieB

Good Day Ladies:

Can we all say Hallelujah!! CT scans results finally came back and "cancer in T11 is stable, no worsening of disease."

At this point I am 20 months from Dx. Yeah! Thank you Jesus.

I can really start to smell that puppy breath.

sas-schatzi

https://www.youtube.com/watch?v=y8AWFf7EAc4

Jeff Buckley - Hallelujah (Official Video) . Not quite the regular lyrics

PattyPeppermint

hello. Just poppin into check on everyone. Thanks for the support all. I am still in the hospital but we'll on the mend.

Hootirhoo

Anonymous

Sas,

Thanks for your insight! Carpentry indeed! There was a hammer and pliers and gosh knows what else! I don't blame the surgeon at all. This particular tool has never been known to break before. A report was filed with the FDA reporting an adverse event involving a malfunction. The manufacturer is aware. Two months ago there was supposedly action taken to get experts from my side and theirs to meet at the hospital and examine the tool. Nothing has happened. Don't recall anything worrisome in the surgical consent form other than I acknowledge the anesthesia might kill me.

New doc tomorrow is very interested in the details concerning the tool; especially what the exact materials are that are in it. I haven't been able to get a specific answer, hoping the doc will have some new info.

So sad about the patient you lost. Somethings are just out of our control. I knew a girl years ago that switched careers from being a beautician to an LPN. She mixed up used/clean thermometers and killed a frail elderly patient by giving a dirty rectal thermometer orally. ewwwww. THAT was her fault! Last I heard she was cutting hair again.

Thyroid was first thing explored when my fibro symptoms worsened. Way crazy carousel of differing opinions and dosages of synthroid and cytomel. Originally thought to be sub-clinical hypo-thyroid. I do have non-cancerous nodes on the thyroid....not considered to be Grave's or any of the others. Took years to find a good endocrinologist who determined the thyroid was fine. Lots and lots of tests - the guy was thorough. Only thing he could figure was fibro. Cancer had been searched for. Wasn't until after dx I learned my blood shows "clean" - no markers or signs of cancer. Heck, all my bloodwork is normal. On paper I am wicked healthy!

MO has me on 1,000 IU D3 three times daily as well as calcium supplements. My D3 had crashed a year and a half ago. I don't notice a difference in pain though.

My father and his younger sister contracted polio when they were little. She has had life long issues, mostly with her spine and legs, and has suffered with increasing pain/problems as she has aged. She is a sweet lady, so unfair. My father's only affliction was lifelong extreme and unbearable asshole-ishness. So, so unfair.

Anonymous

JunieB! God is Good! So happy for you! You should immediately take advantage by saying/doing whatever silly thing you want. If anyone makes any comments you can tell them "Ha! I'm STABLE! The doctor says so!"

Oooh, puppy time....much happiness ahead!

So much good news this week ~ happy dance? ~ We need a happy prom! And maybe a small parade or two....

feelingfeline

Patty XXX

feelingfeline

ShepKitty - you surely did not want the added legal stress that is awful, so sorry.

susan3

yeah jazzjunebug!!!

Lookforward

JunnieB two thumbs up 👍👍🎉 celebrate with something decadent tonight .

Shep sorry to hear about your medical problems.

JunieB

Thank you everyone for the Yeahs!

Sas - I can't remember if I said that I'll be going to a SNF (skilled nursing facility) after surgery for 3-4 weeks, so that'll get me over the hump to recovery, then outpatient P.T. I have a P.T. who is totally awesome. I've been going to her for several years after surgeries, etc. Along with the normal P.T. she also does soft tissue work to help speed along the healing.

Patty - So glad to see you posted again. Hope you get better and home soon.

Shepkitty & Lookforward - Can't decide what to do to celebrate. My results just make me look forward and excited about when I get my puppy. September feels like so far away.

Again Shepkitty - I'm hoping & praying you get some good news yourself tomorrow at the doctors.

Doing the "HAPPY DANCE"

JunieB

JunieB

Loveroflife

Happy happy dance for both Susan and JunieB for favorable results and for Patty for feeling a bit better.

Susan, you scared me for awhile there. Whew! I saw that I was not the only one misunderstood you. I'm glad you are there for MammaRay. She is one of the ladies I think about often. Saw what she posted on the LDS thread the other day....Just wanted to give her a hug. Sigh. Chemo tomorrow for you, right?

ShepK, wow!! I admire your attitude despite your challenges. Praying for wisdom for your docs. Best wishes with tomorrow visit. So far Mitzy is doing great alone outside the crate. The longest time so far is 3.5 hrs! She seems less anxious and settles down quite fast. Must be the Prozac. We can see with cam that she waits by the stairs when we are away. Not sure if she knows DH is away or she still thinks that he is upstairs taking a very looooooooooooong nap as she often waits there for him when he naps in the afternoon. Ha! I'm thinking maybe because guarding is in her nature, she does not like to be caged up. At night whenever I let her out to pee before her bedtime, she always has to patrol the backyard before she comes inside. If the doorbell rings while she is locked in her crate, she will yelp and "scream bark". Hope she continues to behave herself.

Forward, when is your daughter getting married?