INSOMNIACS place to talk in the wee hours
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hi all! Been sick and busy, trying to catch up (or maybe not).
Sassy, glad you got your dishwasher fixed! Clean counters are wonderful.
Luv, thanks for asking about the job interview. Job info didn't come thru typical channels, the only info I had was they were looking for someone with experience working with low-income households (which I have), or in the absence of experience, they want a 4-year degree (which I also have). What they really want is someone with low-income Section 8 experience (which I don't have). Nowadays, at every interview some kind of test is given; had to compose (on a computer) 2 kinds of letters to clients in 30 minutes. Really? So crazy.
We've been enjoying cool weather here, even some rain too, but not much. Heard we're having a heat wave later this week. Just when I put away the summer clothes. Was really windy Monday and Tuesday, love the sound of the chimes tinkling, don't miss the crud the winds kick up though. Yesterday was a sinus migraine, Benedryl and sleep.
Today was so grateful I finally got the issues dealing with my homeowners insurance solved. Took me hours to create 3 spread sheets to explain it all. Major screw-ups on their part such as us making payments which never were applied to any of our policies (4 policies since April). All said and done, we don't need to make a payment until the beginning of the year - and it looks like a little more will be owed to us too. Feeling like I finally get to close the latest chapter on the second occurrence of major water damage which was discovered in July of last year and took three months to complete (the first time in 2011 took a couple months and the entire interior of the house was painted and new flooring thru-out the house). Was a pretty crappy job the second time, like they had no clue what they were doing.
DD coming out tomorrow night to spend the night so we can visit my Mom. Hoping Mom remembers her, my Dad is excited to see her. (And yes, I sent a text a week or so ago that she should see them, even before Mom's latest turn).
I want to thank you all for being my primary support. Haven't meant to act like a crazy lady. I realize how lucky I've been having both parents around for so long, that I'm so grateful we've been fairly close, that they're the best role model of a loving couple, how they created a great family and gave us what they could. I knew this wasn't a forever thing and it's part of life, we all go thru it. Just have had so many other issues going on too, I get overwhelmed. I often feel like I have way too much on my plate right now. One of the things I've learned this past 2 years (since BC DX) is who my real friends are. Startling how many "friends" think they're kind and compassionate, but that's only as long as things are going great and life is rosy. You have made me feel very wanted, needed, loved and important. And for that I'm truly grateful!!!
Not sure how much longer I'll be awake for those night owls awake tonight.
For those I still owe a PM or email, thank you for your patience.
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I'm sorry I just can't keep up. I started taking anti-B' again and feel icky but I want to pop in and say Good M
orning.
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lol
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Saw MO today....she says I need to stay off Tamoxifin for a month to see if symptoms ease up or stop. Then if they do we will either restart Tamoxifin or try another one..she said its the sister drug of Tamoxifin and is sometimes tolerated better. I asked her what if I didn't take it at all and she went on a long thing about how oncology is an unperfect science and it could or couldn't be really beneficial for me to take it. She said that it's all a crap-shoot alot of the time. REALLY? But, with that said she wants me to take it and she told me she's never had a patient NOT take it for the 5 years that wasn't stage 3 like me.Is it just my MO or should I not be able to get more clear cut answers? She's great for listening to me about how overwhelmed I'm feeling, but this other stuff I just don't know. She did say headache, ear ringing, and dizziness were from Tamoxifin, even though when she first started me on it she said there were very little in the way of SE's.
Bleh, I'm just going to go about my life now and stop worrying or at least that is my hope. ((hugs))
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Tang, I think I remember seeing somewhere that there is a test they can do (maybe genomic?) to deter if the tamoxifen will actually help. I could be mistaken, maybe Sassy will know.
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Nettie - about the cholesterol. Some docs believe that if you're not going to treat it, then don't test for it. I know it sounds stupid but that's the way they operate. Much more PCP's domain than MO IMHO. Mine PCP finally consented to test it last year after almost 2 years on Femara. Your MO sounds like mine. Never as satisfying a visit as others I hear about on here but "everything's OK" yada yada.
2TA - I never completely put away the summer clothes. I always leave a couple of pair of shorts out handy. I always look like something a clown dressed around the house anyway. Today camo colored ankle pants, 101 Dalmations shirt, red sweat jacket and red/white socks. Good thing DH doesn't care either. Could be near 90 in December some years here. I'm slowly winnowing mine out as I get the winter stuff in. Think we're having almost winter next week with prob. 1st freeze. It is a beautiful fall day here today and I'm supposed to be cleaning. Hah and I scheduled a pedi next week. At least it's b4 the really cold stuff hits late in the week. Pedi, flip flops, home. Aww so sweet of you to think of us that way.
Sorry Cami for the Anti B's again.
Tang - my MO discounts all I tell him too. All I get is exercise, exercise. Course now I only get that lecture once a year.
Well well I did some reading on frozen shoulder. We actually have 2 threads on here about it and have decided I don't have a rotator cuff tear but more likely frozen shoulder. I have all the exercises they gave me last year now to get my derriere up and do them. I've done some off/on the last 2 days and it is slightly better. But I don't think I'll ever get to where I can put a bra on right again. No extraneous doc visits the next 2 months and certainly no tests. Not anywhere near my deduc. I do have glaucoma doc visit next week but that's a whole diff. story. My shoulders will either improve or I will do something next year. Unfortunately not liking the ortho my PCP sent me to but I loathe change. He's OK but again an awful communicator. Ran into a lady at PT last year who adored him. Crazee.
Spookie - I guess I don't understand the office manager's comment either. Do you need referral to see MO? I wouldn't think they would much want to disrupt an already estab. relationship unless "non network" kinda thing. I don't think I'm seeing the MO my BS would have chosen for me but she said sure not a prob when I suggested him. Think she even had his business card. Maybe I'd have been better off not that the care has been suspect, not like that. My friend sees partner who was in another part of town but is now right next door. IF and pray not I ever need anything more complex it will be a tough decision. But then again I do think most MO's do better (not the right word??) with more complex pts. I think my tx is pretty boring, in/out.
Tang - I also think the story changes as treatment progresses. I think MOs are loathe to list possible SEs of anti-estrogens. And again somebody somewhere will report most any SE you could come up with and it will be on the drug insert. Also I think it has to do with the age bracket most treat. I know I accept more because of my age and chalk it up to that. Maybe many pts don't truly report SEs. I don't have a clue what my MO would say if I wanted to take an AI vacation. My bet is horrified. Won't find out soon anyway; next appt. is July.
Yup, there is a tamoxifen efficacy test. Just google tamoxifen metabolism test. Sassy would be better able to discuss it.
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Tang, your Question " Is it just my MO or should I not be able to get more clear cut answers?" It would be lovely to get more clear cut answers, but they aren't there. What I TOTALLY LOVED about your MO's response is she was being absolutely honest with you. Very refreshing. Regretfully, to often MO's and other docs present info as being "Without Question". In science nothing is without question, b/c science is always re-examining present knowledge.The info from LMG Is right on too. The link she gave you is to GENELEX. LOL, I can go one for hours about Genelex and the Cytochrome450 liver pathways. I won't
They have been in business since around 1998. They started cytochrome testing around 2010. The tamox test is for 2D6. But it also metabolized through 3A4. There is a thread here on BCO that I did allot of work on. If you read it, start with my posts starting in Feb 23, 2014.The reason I suggest starting there is it was just after I had my 3's tested and found they were abnormal. I then was on a mission to get the word out. I tried ever so hard to simplify the info. I have re-read those posts, they are still not easy. But if you read them all starting in Feb, hopefully you'll get the gist. The testing for the Cytochrome paths will become the standard of care within 5 years maybe less. The genetics only need to be tested once in a life time. My posts are very opinionated. I was intent on changing the world. I'll bring back the link in a bit. Please, I do encourage you to read them. Edit: see next post I had this old post in storage ----much easier read than the 2D6 thread.
https://community.breastcancer.org/forum/73/topic/798301?page=1
The approach of discontinuing for a month is not unreasonable. Tamox and the AI's have numerous negative side effects. It a great approach considering the negative impact these drugs have.
In any new onset change of s/s's doing a timeline is the first best approach. How to do this is think about when the s.e's appeared and write down the date. Then think about what occurred in the previous 2-3 weeks prior to the s/s's(signs&symptoms) appearing. Write down dates of any new change----accidents, new drugs, dietary changes. Then what occurred after s/s's occurrence. Then organize the info on a straight line by date. I do this all the time. Sherlock Holmes
LOL, last evening, I figured out the likely origin of a problem my counselor was having by using this approach. For me, the recent drug override of the steroids that caused a severe teeter toter of my thyroid function was identified by this method. My PCP was so relieved when I walked in with an answer.Tinnitus, dizziness, nausea all occurring as a new onset scenario should have a bit more evaluation then just discontinuing the drug. Problem is it involves your PCP and few specialists. Remember these are symptoms. You need a diagnosis. Each doc has their own piece of the pie. Which, also, explains why Nettie's doc wanted her PCP to do her Cholesterol versus her running it. Not her piece of the pie.
1. PCP---should do at minimum a physical exam. The physical exam should include a test for the 12 cranial nerves and basic neurologic function. But many PCP's may not feel comfortable doing this. Don't be surprised if you ask for a basic neuro exam that they defer to another doc. They may run some tests that will establish a baseline. Labs--electrolytes and CBC(looking for anemia). But the eval's that I suggest below (2-3) even if the PCP orders them, the PCP interpretation may not be to the level of the Cardio and ENT doc.
2. Cardiologist--physical exam, Ekg, Echocardiogram, and carotid doppler
3. ENT, physical exam, audiology test, ruling out inner ear problems. While tinnitus is most commonly caused by hearing loss, you have the additional symptoms of dizziness and nausea. Tinnitus caused by hearing loss is not associated with nausea and dizziness unless it's affecting the inner ear. All three symptoms can be caused by inner ear.
4. Neuorlogist--------not on your list to see until the other doc evaluations. I know it's your greatest worry, but jumping to a neurologist before going through the basics is NOT a first best approach.
What you can do to help?
1. Keep a daily journal. Helps immensely when there has been a new onset change. You can rapidly develop a time line. The journal can be a calendar. You don't need long notes. Just notations. i.e like "flu shot" , "new symptoms--t/n/d
2. Track BP &pulse--I'll find a thing on BP and pulse, I wrote along time ago. Keeping a daily record of your BP establishes baseline. If your tinnitus/nausea/ dizziness changes check this as soon as possible. The pulse check should be done by finger touch. Touch will tell about irregularities & strength.
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Old post on Tamox and 2D6Dec 21, 2012 12:26PM , edited Aug 23, 2013 09:42PM by sas-schatzi
KayB, Hello my friend. To add to your info which is highly appreciated, there is genetic testing avaiable for 2D6, 2C9,2C19. They have been available for several years. I first started studying the cytochrome P450 pathways as research became available over the last two decades. My interest became intense when I failed chemo and Arimidex/Femara. Also, DH's lymphoma had returned and he was headed for new chemo.
The CP450 pathways are numerous. 25% of all drugs/chemicals take a first pass through 2D6. Other common pathways are 2C9, 2C19. Many more. Testing will show if a pathway is present, slow,intermediate or fast metabolizer. Each will alter drug use or choice of drug. Better able to identify drug interactions b/c pathways can be blocked or altered by a drug as seen in kayB's article above.
*The FDA Federal Drug Administration has required drug manufactures to identify pathways for > a
decade. .
*The inclusion of pathways has been required to be in drug information for > a decade.
*Development of testing for other pathways is ongoing.
Insurance companies have progressively come on board as to paying for testing. Reason: economics versus care for the insured. The testing allows drug prescribers to avoid drugs that can't work b/c the pathway is absent,slow,too fast,or interacting with meds patient already on. Thus, avoiding a drug with no chance of working or complications created by a drug interaction that could have been avoided. The spectrum of considerations of this subject are HUGE.
*Medicare covers testing
*Insurance carriers that don't cover it may be cajoled into covering it with a letter stating "I have been
recommended the following medicine by my Doctor to treat the following_________. The genetic
testing will allow my Doctor to forsee the drugs ability to work in my body and or prevent forseeable
complications. By taking medicines without knowing the above, is more costly to you the insurer
because you will be paying for the drug(s) as part of my coverage. Also, the potential cost of treating
an avoidable complication is an economic benefit that offsets the relative small cost of testing".
This type of letter, also, puts the insurers on notice that if there is an untoward outcome that can be shown that is related to these pathways, there may be a legal recourse.
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I decided I didn't like the BP post so I deleted it, But I really dislike Blue boxes0 -
Good luck on all your issues - skimmed above. The side effects of these drugs are amazing.
I just have to tell the Florida folks that Fernandina Beach and Amelia Island area is stunning! Just gorgeous beaches, dunes and pristine white sands, blue skies and fluffy white clouds. Lots of pelicans! If my knee wasn't just killing me I would rent a bike and ride all over these trails and birding areas. Lots of lovely shore birds. Are you folks LUCKY or what - 81 degrees and perfect weather!!! I am going back tomorrow. (Finally found out the reason for my lower back pain... another UTI. I'll get antibiotics when I get back home. Oh well.. 3rd one this year. Thanks cytoxan... amazing my kidney functions are always normal and I never run a fever - and I am endlessly tired!)
Good night Owlettes.
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Spookiesmom- I may be following in your footsteps. You ditched your PCP. I just found out mine ordered the exact same antibiotics for the UTI that she ordered the last time, 5 days worth. I took it a couple of months ago and here it back again or it never left in the first place. Who knows.. can't tell and no one checks. How would I know if it was cleared up? I am sure if I took these antibiotics again and at the of the 5 days or 10 days checked to see if it was gone with another UA - she would say nope. So how does this keep from being a chronic issue...ugh.
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I didn't know what a UTI was untill I was dx'd type 2 diabetic many years ago. I get about 3 a year, even had one during chemo. And my A1c is always 6.5 or less for the nurses.
They did check the last time to see if it was gone. It was. I try to drink as much fluid as I can without sloshing.
And they always rx the same ab. I guess I'm just lucky?
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My blood sugars are always normal. Fasting or not they are always in range. Neither MO or PCP have checked A1C that I ever heard about, even when I was on afinitor which can cause high blood sugars. I do not take afinitor any more. I was supposed to be able to check labs on line but in 7 months it could never be set up. I gave up and stopped asking about portal access. Unless I am standing in the office and ask for results I don't get them. I can't drink tons of water because of chronic issues with edema feet ankles and shins. I will ask for repeat UA to check if really gone or not. Good case for expending the effort. I guess I am lucky in that i have no burning or frequency, just lower back pain and funky smell. TMI! At least there is something that tells me - something is wrong. PCP did do C&S, so there is that results.
Yes you are lucky. Did you get your PCP changed over? Do you like him or her?
This Florida weather is Fantastic good cure for Oregon rain! Love the skies - so blue and the clouds so puffy and white.
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yes, I changed pcp. I think this one is a keeper.
It's rough, somebody has to live here to enjoy the weather! LOL but the summers can be brutally hot
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Send it my way!
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I have my T-shirt on Spookie!
Tell me, what does "Dunedin" mean? I know you are by a beach... so can you send more pictures? I love those.
Okay, never mind.... I found this one for you! Dunedin must be a beautiful area.
Sassy, you guys have an endless reservoir of knowledge.... ! It is so helpful to a lot of women here... I'll bet when new gals come on BC.ORG they might be looking for "Tests that I should know about."
Or put that in a header on a thread?
You could be like a prescription bottle! Listing possible SE's , and inter-actions with other drugs, and some personal experiences. Or would that be like knocking down a hornets-nest, because ..... well just because.
If I knew as much as some of you gals, I would make my own blog.... Me and Cammi could even do one! We could call it "EVERYTHING YOU EVER WANTED TO KNOW ABOUT NOTHING, AND HOW TO DO IT."
We would be millionaires in no time. We could just have fun, and make things up, or expound on things we DO know about.... like Pole Dancing, and Phone Etiquette..... Or how to fall with grace & flair..... Maybe even What NOT to do when confronted with the big D!
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So I was out hiking this morning...........
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That almost looks like our marina! Dunedin was settled by 2 Scotsmen way back when. The word I'mcombination of Dundee, and Edinbourgh Scotland. There is also a Dunedin New Zeland, but I don't know who was first.
The town has kept its Scottish heritage, we have Highland Games every spring. Nobody blinks if someone is wearing a kilt. Piping is taught from elementary through high school, and we have a world class City Band. My DD has gone to Scotland twice to compete in the World Games.
We are also home of Honeymoon Island. There were little shacks built on the water at this island After WW2, newly married couples entered contests to spend their honeymoon in these shacks. I'll get some pics later
This is DD leading a parade for a Homes for Heros vet.
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chevy that pic made me smileSass-thanks for the info and I'm going to ask about this test. I'll be honest I don't understand alot of what you typed, it is over my head somewhat
I might as well ask, what I were to have my ovaries removed....would this allow me to not have to take this medication. Of course having ovaries removed presents its own set of problems I'm sure. I think I just really need a break from all this cancer stuff. I've been immersed in it for a year now and I'm feeling very stuck. I had my mx last November, so it's been almost a year and while I've come a long way, in some ways I feel like I'm just learning to cope. I really wish there was more post treatment care made available to cancer patients. Like counseling, groups...I mean I know they are available but I wish it was part of the whole package and was offered at the treatment centers.
Anyway, I reached out to the lady from church and we've played some phone tag. I'm making some progress though
((hugs)) I need to take a break from the boards, but I'm drawn back in everytime
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Rose sequence to evaluate for UTI....1.Doc listens to the patient..2 Under a microscope the doc does a preliminary look at small droplet of urine to look for certain cells.....3.Send specimen to lab..4.Lab runs routine urinalysis.5 Lab does culture and sensitivity if certain cells present....Petri dish prepared with urine sample. 6. At 48 hours the procedure for looking at the urine culture is done. 7.Then petri dishes are swiped with the antib's to check which anti'bs kill the bacteria...8.At 72 hours, the petrie dish is evaluated for anti biotic results. The report follows the same presentation through the country.Organism:______________________identified
Sensitivity:
1.drug name 16 ,resistant
2.drug name 1 suseptible
3.drug name 4 suseptible
4.drug name 3 resistant
5.drug name 2 resistant.
The chart points out which drug should be used.. In this chart the drug of choice would be number 2 because it ha s a low number. The lower the number the better it will fight the bacteria. The words susceptible means the drug can work. Resistant means the drug CANNOT work
. The next drug that will work is number three. The 4 means it doesn't work as well as the second drug , but it is suspetible to killing the bacteria. Example 1,4,5 will not work because they are resistant. Even though example 4 &5 have a low number they are resistant.
If multiple organisms are found, there will be a separate report for each one.
Upon completion of the antibiotic, a REPEAT urinalysis and C&S should be done to asure that the bacteria has been irrdicated. The repeat urine for this step is commonly not done b/c it is assumed that the antib worked. WRONG. This is where you need to insist that a repeat urine be done
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Just bought myself CT scan
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Just was sitting here looking at the paperwork they gave me for my next appointment with MO for Dec. and I noticed something that was never on my appointment papers before. I know this is going to sound stupid but can anyone tell me what a Cancer Antigen 27-29 is?
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Rose, while on any medications that increase blood sugar, the best practice is to check HBA1c, every three months. If a patient has no issues a HBA1c should be checked once a year with the yearly labs.Usually yearly labs are CBC, CMET(CNP), TSH,FreeT4 &FreeT3, B12, Folate, Iron panel. urinalysis. Tumor markers. HBA1c, Vita D (see next paragraph), Plan other test in the same way. This Jan I need an update Echo, carotid Doppler, Ekg. Ultrasound for the next. Will determine if I need any other diagnostics and I will get them scheduled. I,e Cat scan(last done 1 1/2 years ago, Last liver MRI> 1year ago. for brain too. Lock down when next colonoscopy is scheduled.
I have a urine test for cytology once a year to check for bladder cancer BECAUSE the chemo & RAI 131 have predispose me to bladder cancer.. You that have had chemo consider asking for a "urine for cytology"
Consider a hemacult once a year also. That tests the stool.
I'm trying to coordinate that all these test are done in Jan. Reason: If something is abnormal, then It's at the beginning of the year and new deductibles. AND I' fresh to start to attack whomever to fix things.
It's all done at once, not piecemeal. Easy to sit and determine how the whole bodies doing at ONE time.
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Chevy I did do that LOL years ago. The Mods even pinned it. Please, try reading it when you can.
The name of it is JUST DIAGNOSED-GET PREPAREDhttps://community.breastcancer.org/forum/5/topic/748296?page=1
Chevy I did a Constipation thread and Jill Thut did a Rectal issue thread.The link to Jill's thread is in the Constipations topic box. Please, read from the beginning. There's also the appropriate joke. Couldn't resist. Can't be talking about poop all the time and not pun
CONSTIPATIONhttps://community.breastcancer.org/forum/6/topic/781867?page=1
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Chevy, that's really hot what ever kind of guy he is --yummy. My DBF looks like the dirt part. He's always covered in DIRT. Cleans up well, but he is a STICK. But I love my STICKMAN hmmmmmmmm.
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mom that shows on my labs, blood for tumor markers
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Tang, Tell your doc b/c your body responds so differently to medications, you would like your genetics done. They would include in a package deal 2D6, 2c9, 2c19,3a4,3a5 and VROKC1. On life time test. It will make all future drug choice safer.My 2's are normal. My 3's and VROK1c are all abnormal. 50% of all drugs go through the three's. Coumadin is specific to VROK!c
Check out Genelex website and even give them a call. They will help
1-800-test-dna. Tang very healthy to take a break , please, just let us know. Except for the ban, I have multiple times taken a break over the years. A great time to take a break is over the holidays
Tang, I have a bias against the ovaries in ER+ bc. This is based on Evidenced Based Research. Unless another child is planned, I think they should come out. For Me, when my twin sister was dx'd with ER+ BC in 1996. I had the works out. Had her do it too.It wasn't recommended treatment at the time, but I new the treatment of tamox and evista wasn't absolute. HINT: Remember your doc saying she didn't know everything. SO, out ovaries, tubes, ute. NEVER regretted it. One less thing to worry about
2008, I was in the pipeline for bilateral prohpy, Mammo was NED, doc lied to get the MRI approved--said he felt something Nada---bingo moon and it's ring on MRI. Lot's of story after that. But the bottom line, I got them off. The CA was very very very aggressive, Onco 30. Then b/c of my genetic abnormal 3's not being known yet, I was given a relative overdoes, Then the hopitalist put me into renal failure and the chemo couldn't be peed out. Overdosed + circulating for longer than it should have, I believe had a part in killing my aggressive BC. In this case a wrong did make a right. YAY
MY being proactive, plus the screw ups saved my life YAY. Isn't that a story The bad part is the nurses didn't check urine output. I was in retention b/c of the pain med. The chemo stayed too long in the bladder. That's why I have to have urine cytology once a year. High risk for bladder CA.
Tang very healthy to take a break , please, just let us know. Except for the ban, I have multiple times taken a break over the years. A great time to take a break is over the holidays
Many do. Then pop in over the holidays of T-Day and XMAS with a holiday message 0 -
Mommy, Spookie's right
Dutchy YAY and POOP. I get what you mean
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Ya, I hate a fuss being made over me but I guess denying I have pain is not in my best interest. My labs are all normal.
Tang, taking a break is what you need. I hope you can find other thing to occupy your mind.
Sas, you write volumes
. You have a wealth of knowledge.0
orning.
