STFU (Shut the F*** UP)
Comments
-
Oh Alyson hope you're having a great time.
0 -
Alyson-Oh try and fit a trip to plymouth plantation, the ships, and Mystic Seapot is close.
0 -
Ducky, hugs
Mary, I can stay a while but must pick up the grands at 1:300 -
My hubby and I celebrated 45 years of marraige in August and he has been such a support for me thru this "C" ordeal and reconstruction....and multiple billing snafu's....(SAS: IT IS NOT MY PROBLEM....right?)
When ones we love, leave this life, whether we love them for a day or night or for many many years we will never be the same as they touched our life.
I saw this story about Fred and Lorraine on the news and cried like a baby:
0 -
You, too, Teka.
0 -
Last TCH chemo today......can't sleep I'm so excited...and because of those stupid steroids...lol
For Miss Chevy...happy chicken dance, sorry Miss Cami0 -
Morning gals.... Di, this is a different link to the same story! I couldn't get sound with the other one....And Miss Chickers! Congratulations miss fancy pants! Good for you!Hi Teka, Spookie Juliaanna, and Mary.... Mary.... thinking of you today...They're HOME...! Dang! So no more eggs for awhile...
DH always said, "can't we just BUY eggs? Don't they sell them at the store?"
Not the same, I say.... Most men just don't GET it...Ha!0 -
Good morning Hoolies---
Mary we're with u but still tell us what going on I'm sure we won't hear much with Chevy squakin' about her eggs, well not her very own ones, but the chickens so let us know.
ChickaD last time for this crap--Good For u--YYAAAYYY
OK I think I'm figuring out about my floopiness, Remember I stopped Aromasin a while back and I started it up a little while ago and I think my body is readjusting--Cuz this was reminding me of something but I couldn't remember, then my legs started again00well my back and my side are a done deal but other things too, I just forgot. But I'm still going to ask for the Vitamin B--so be patient wih me.
0 -
Di we will talk again today and go back over the words again.
call me when your up. I'm on EST and you're on pacific. It's 8 am here now0 -
Sass! How cool is that that you are working with Di?
And I'm PMing a gal that also lost her hearing while on Tamoxifen.... I can't really HELP her, but at least she knows this has happened before, and what to expect, and won't be so afraid.
At least with hearing aids, our hearing can be somewhat "normal" again... Well maybe not "normal" but better than not hearing at all.
Cammi! I can STILL hear you, ha! What is "floopiness?" I thought that was your normal. Aromasin? I think that one makes you hurt all over? Or do you get used to it?
Okay.... I had better get busy.... still dark out, so I CAN'T go wandering outdoors yet... It's too hard to get up after I fall!
0 -
0 -
Good morning Hoolies, going to be a busy week pocket hopping. I'm always good for chocolate. It's a Harry Potter thing
Mary's first today. Then Chickie? Then me for get my biopsy changed.The thyroid biosy site started hurting 2 weeks ago. Dear ENT doc ordered another ultrasound instead of waiting till nov. Big hugs too him. Now I want to get the vulva bx dat changed to this week. A very bit nervous on this one.:(
Chevy, that was so sweet aboutFred and Larraine. Thanks for sharing.
0 -
Okay Gang,
I know I've been somewhat remiss about checking in, but I've been busier than ever with my practice and now I had another rather strange medical issue arise.
How's this for a weird side-effects story?
As you might recall, I suffered a stroke in April, a little more than a year after finishing chemo and starting Tamoxifen. The effects were minimal, but it was more than just a simple transient ischemic attack. The diagnosis traced the problem to 1) a neck injury I suffered in a bicycle-racing accident 30 years ago and 2) the increased clotting that results from Tamoxifen. So, they gave me a host of drugs, including Plavix and aspirin.
Things were going well and this summer my oncologist even restarted me on Tamoxifen again.So all is hunky dory until last week, when I felt that gap between my arm and chest tightening up ... almost like the swelling I had on my chest after the bilateral mastectomy. Well, it wasn't my chest. It turned out that my left bicep was swelling to the point that it looked like I was flexing my guns at muscle beach or something. I freaked and dashed off to the doc's office ... even though the receptionist was reluctant to get me in on short notice. (WTF? Middle-aged man, with a history of stroke and cancer reporting severe pain in his left arm. What do you have to do to get noticed in that office?!?!?!?!)
Three hours of ultrasound and MRI exams later, the doctors determined that I had suffered a "spontaneous hemorrhage" somewhere in my left bicep muscle ... and there is nothing they can do about it. Well, we did one thing: I got the #$%^ off of Plavix. It turns out they have cancelled more than one study involving the Plavix/Aspirin combo because the mortality rate from spontaneous hemorrhaging was more than twice that of the Aspirin-only control group. I guess I am lucky this happened in my arm, rather than my brain or G.I. tract.
Now, four days later, my arm looks like someone attacked it with a tire iron, with a solid purple bruise running all the way from my underarm to my wrist. (I'd put up a photo, but it's ugly.)
Even the doctors and nurses who see it say "Holy Shit!" - or something along those lines.
What makes things worse is that this is the arm from which they removed 11 lymph nodes, so it is going to take for-frickin-ever for this to clear up.
Anyway, I am simply mentioning this as a cautionary tale about the potential negative interactions and side-effects of drugs, even when prescribed by a doctor in whom you have a lot of faith. I trusted the neurologist's recommendation and did not take the time to do the necessary background reading.
Aside from that little kerfuffle, things are going well, though.
I hope all of you are doing well or, in the alternative, at least making progress toward doing well.0 -
Charles it is so good to hear from u. we never forget u, but not so much under these cirumstances. Holy Shit is right WTF especially after u had a stroke, how horribly scary for u, I've never heard of that one but as we all gather more--we hear more and more SE's than was ever put in a study, that's for sure. I'm so glad it's under control, but see how much no one really knows about all this crap and sometimes we are the guinee (sp) pigs. And thank you for letting us know and another thing is I'm so glad u'r busy at work so when u work u can get u'r mind off this shit. And it doesn't end as much as other people thing just cuz chemo and rads stop. Thank God u'r all right and good u checked in.
0 -
Charles......WOW.........and people laugh at me when I read the package inserts......Dr's don't.......hate meds......always have.......glad you came through....hugs.......I can hug you right..........your wife won't mind......your married?????????.........oh hell either way here's hug....(((((((Charles)))))))))
0 -
Charles--why is it BC just leads from one CF to another. Two things. One google and read about compartment syndrome. This is a situation where blood or fluid get's gaught in a compartment. A compartment is the sheath of connective tissue around the muscle body. This sheath gets thicker and thicker until it forms the tendon. The tendon is the attachment end to the bone. There is an attachment at each end. The biceps tendon attaches at the shoulder and on the radius of the lower arm.
There is muscle inside the tendon sheath. This tendon sheath, also known as connective tissue, is very tough and strong. It doesn't distend well. When bleeding occurs inside this compartment, we feel it as pain & pressure, we see it as swelling. The nerve, artery and vien go through this space. The s/s's of impingment on the three have disticnt s/s's. Nerve--sharp stinging pain which can radiate down the arm. This would have the same feeling as "hitting your elbow bone". The vein--swelling at the site and distally towards the fingers. Artery symptoms and thes are the most serious. Abscence of pulse at the wrist, the skin would blanch i.e. turn white. Pounding type pain. or pain similar to a Bp cuff being pumped up too tight and not released. If the arterial symptoms appear, it is an emergengcy. Got to ER immediatetly and say I have a compartment syndrome symptoms in my upper arm. Use those words b/c the staff will act immediately. It's like saying I have chest pain, everyone jumps.
Second, call 1 800 test dna , they have a test for plavix. Ask for the test kit to be overnighted to you. Take it to your MO or PCP. Check with YouScript folks re; if you insurance covers the test. Work your insurance company as to who they will reimburse for the test. By getting the test kit sent to you, it will give you time to work on whose going to order the test and how insurance is going to cover it. ASk that you also be tested for 2D6, 2C9, and VKORC1(tests for coumadin dna metabolism). In today's medical climate. With testing for the ability to determine how you will metabolize coumadin and plavix. This goes beyond malpractice in my opinion, it is criminal neglinence that a patient is not tested when placed on the drug. NICE YOUR A LAWYER. GO GET THEM ON THIS ONE CHARLES. 2c19 is the specific test you need done
The medical community KNOWS these tests are available, but are still risking peoples lives by not checking metabolizing ablity before prescribing.
It takes a full 7 days for plavixs to wear off. You are not out of the woods yet. You need to be very careful about bumps/bruises/booboos. AND please, don't bump your head
One they risked your life
Two they risked compartment syndrome on the arm which could lead to the loss of the limb.
This is very serious stuff. Very serious stuff. I'm Pm'ing this to you with my phone for backup info if you need it.
Please let us know what happens. Sassy
0 -
This is a copy and paste info from the YouScript site. I'll pm it as well to Charles.
Folks I may sound like a bleating lamb in the wildnerness. But NOT knowing genetic status cam maim(lossof limb) or permanently disable, or kill. At least Coumadin has a reversal agent. Plavix does not. The only thing that can be done is allow time for it to wear off.sorry drop the C&P will go get it.
Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out shouting "holy crap....what a ride" SAS0 -
This is a copy and paste info from the YouScript site. I'll pm it as well to Charles.
Folks I may sound like a bleating lamb in the wildnerness. But NOT knowing genetic status cam maim(lossof limb) or permanently disable, or kill. At least Coumadin has a reversal agent. Plavix does not. The only thing that can be done is allow time for it to wear off.---------------------------------------------------------------------------------------------------------------
Plavix
CYP2C19 Test for Clopidogrel (Plavix) Resistance
On March 12, 2010, the FDA announced that they are adding a black box warning to the Plavix label to advise physicians of the importance of genetics and the availability of testing.
Several recent landmark studies have proven the importance of 2C19 genotyping in treatment using clopidogrel or Plavix. Researchers have found that patients with variations in a gene called cytochrome P-450 2C19 (CYP2C19) have a 3.58 times greater risk for major adverse cardiovascular events such as death, heart attack, and stroke; the risk was greatest in CYP2C19 poor metabolizers. The abstract is available in the online version of the New England Journal of Medicine.
Population Frequency of Cytochrome P450 (CYP) 2C19 Metabolizer Types
Poor (no or low enzyme levels)
Intermediate (reduced enzyme levels)
Extensive (normal enzyme levels)
CYP2C19 3-21% 24-36% 43-73% *There is wide variability among populations. People of Asian and African ancestry have a greatly increased prevalence of poor metabolizer status.
CYP2C19 is not just involved in the metabolism of clopidogrel, it metabolizes many other medications including antidepressants, barbiturates, proton pump inhibitors, antimalarial and antitumor drugs.
Who Should Be Tested
The CYP2C19 test for clopidogrel or Plavix is considered appropriate for any patient taking or considering this medication.
0 -
Charles good that we could chat. For everyone else. they have been watching Charles for compartment syndrome since last Wed when this occured.
We talked of this on the phone, but I want to add it here for completeness. The reason you didn't end up with the worst case scenario of a compartment syndrome is, you sprung a leak. The evidence of that is the fact that your full arm is black and blue. The blood seeped out of the compartment and filtered (infiltrated ) down through the tissues to the lowest area which is the forearm.
What you need to watch for now is if you notice any of the s/s I mentioned above. If you have a change of s/s it could mean that a clot formed or is blocking the leak site. That would allow for a build up of blood again. Now that you know what to look for it will make it easier.
For others Charles last dose was last Wed. He has only a day to go till plavix has lost it's effectiveness.
Charles what you need to watch for now is any change in s/s. It will take along time for the clot(hematoma) to absorb. Once you are out of the wood ask your doc about wrapping the arm in a slight damp towel washcloth, then wrapping the extremity in saran wrap. The is what we refer to as warm moist heat. The saran contains your own body heat. The slightly moist cloth the moisture. But you don't want to overdo the moisture b/c that can emacerate the skin. This can be done with a heating pad. It is done in hospitals this way. But the saran works as well and is less cumbersome as you aren't attached to anything.0 -
Sas u are amazing, I can't say it enough.
0 -
Cami
0 -
Charles, I'm glad to hear you are on the mend.
Mary, crowded in your pocket-think I got a feather up my nose!
Chickiehurrah, waiting to do the happy dance. Let us know when that last drop is done.
Phyllomissinginaction and veggy,too- just give us a sign please
Have a good Monday/Tuesday0 -
Miss Sassy pants....you continue to ROCK and ROCK some more ♥♡♥♡♥♡♥♡♥♡♥♡♥♡♥
0 -
Holy cow! Missed a lot in a week or so since I last checked in.
Dwilli, so sorry for your loss.
Charles, WOW! Glad it was not worse, especially after what ( the always amazing) SAS found out about this drug and poor metabolizers!
I am still between the devil and the deep blue sea on the AI issue. I don't want to try another one only to have the SE's be worse than the Aromasin so gonna try and hang in there until I see the MO on the 17th of this month.
I truly never knew what I was in for when they told me about my "not really cancer- cancer called DCIS and how "lucky" I am to NOT have real cancer etc. Tell that to my TWICE mangled breast (two lumpies due to inadequate margins) and then they radiated me to hell and back and then I am given this drug from the devil. Sure...not REAL cancer, right? STFU is what I say.
See you all on the other side. Love to all you hooligans and hang in there if you have pain and other issues or at least get good pharma pain killers from your docs to help.
0 -
Hi everyone - just checking in. No news, yet.
0 -
Fingers crossed Shell!
0 -
Sir Charles! WHAT the kerfuffle have you been DOING??? What a frightening thing to have happen! Man, we just never know WHAT is going on inside us, and then we have to trust the Doctors, and it is SOMEtimes them that prescribe and REALLY screw it up!
So sorry this happened! And Sass, thanks again, for being here to help! I wish there were some sort of testing for us also.... I mean how we will react to Tamoxifen, or Aromasin, or Femara! We are all different, and sometimes have TERRIBLE SE'S just because we try and not get cancer again. I know the drug companies are supposed to DO all this, but it doesn't always WORK that way. And they don't know what THEIR drug will be combined with... So yes, it sometimes IS a CF....
Like me, and trying to treat my little dog's hot-spots with MBT! That's what happened to my hands for the last year! I didn't know.... I had to research it all over the place... Then the VET said to eliminate all chicken...(sorry Cammi) from her diet. AND IT WORKED. Her Hot Spots are almost gone, I don't have to use that medicine on them, and my hands are clearing up! That MBT caused the Eczema, and the blisters, cracking, and it was miserable.... So was Lacee! She was allergic to the Chicken, and I was allergic to the MBT that I was using on her.
SOMEtimes we just have to cure ourselves, any way we can.... And if we are lucky, we can help ourselves.
Charles, how long have you been taking Tamoxifen? Just be aware that screwy things can happen.... Watch for Tinnitus... Cataracts...blood-clots...etc. Not to mention hearing loss. We can handle the usual SE'S, but sometimes, like with you, other things happen!
Shells, can you call them?
And April.... I know what it's like to not know what to do! Sometimes we can just TRY things, or sometimes we just have to "just say no." I did with the chemo, taking into consideration my grade, stage, size, no nodes, etc. I wish I would have known what would happen with taking Tamoxifen. .... But that's over now. I tried.
0 -
Hello! Sorry I've been MIA, but I've been MIA. This week is my first week as unemployed. My brain does not like that fact. Got the news today that my labs are GOOD! Also no more Zelda!! Holy shit! I was so happy driving home from the hospital that I was blubbering like a baby. I think I can stand being unemployed as long as I'm not still doing that chemo.
HOWEVER - I'm worried about MarywhathehellevilIxempra. It's hard to be happy that I'm finished with it when I know she may have to continue on it. I'll go back and read now, but isn't today her pocket day?
Also I have a new avatar. It's me with my new wings! I have no idea why I need wings but I love the image, so I'm using it. It's a little fuzzy though, so I need to work on it.
0 -
Oh Phylowings we missed u so much, I can see it's an angel with wings, OK since u'r unemployed and done with Z I'll be very gentle with u. (for now) and we're still waiting for Mary, well I didn't see anything yet.
Now talk about what u'r going to do and how u'r really bodily feeling. OK--I said I'll be kind. (shut up Chevy)
0 -
Here I am. We all got kicked out of the scan room cause Ducky was wearing something far to risque for the hospital. Seriously, pet scan machine was down when I got there so I had to reschedule for tomorrow at 12. OH but they did give me a 5 dollar gift card for my trouble....
0
http://www.youtube.com/watch?v=9akWA3Ku6wc