INSOMNIACS place to talk in the wee hours
Comments
-
0 -
thanks Blessings, love to have you here, but won't morning come early for you?
0 -
Morning gals!
Fierce.... It's a wonder I didn't save all that old stuff myself! I mean I even found two old wooden straw chairs in the alley... and I rescued them, and I'm going to paint them fun colors... set them on my little front porch, that is covered. DD also rescued 3 wooden crates, that she got from her store, and I'm going to decoupage some "old' pictures I cut out of a magazine, and varnish them...
That pictures looks like it has an old wash-tub also! Like I used to have.
Now we KNOW Cammi and Lilshit are going to mention how OLD I am, but it was better than taking our clothes down to the river and washing them! And bringing back buckets of water to drink!
Oh wow Blessings! Never take stairs when you can get someone to drag you up! Too much work! Elevator's are our friends... Have you ever had a panic-attack, when staring at the "down" escalator with a cane? It happens! lately!
I remember ONE time, I was sort of running up the steps of a moving escalator, and my shoe caught on the next step, and I gouged my leg so bad, I had blood running down my leg into my shoe! Teeth marks forever imbedded in my leg!
But I was wearing slacks, so nobody noticed..... other than the blood spatters on the floor!
Jwoo! Love your little Meowls! Ha, ha!
Lilgoats! You had "relevant" comments...Ha, ha! I don't know really what those are.... Do we Cammy? And yes, the girls all told me DH DID look like Elvis Presley....Ha! I have some where he looked like Sylvester Stallone also...
Sorry GGhole... Sorry about your friend... That's so awful... and very young!
2ndTime.... That's a great idea! It's kind of like a Strawberry barrel, with the holes drilled out! I'm going with Jwow to Home Depot! I called her Jwow accidentally, but it's kind of funny...
0 -
Please forgive the repeat! I'm kind of panicking this morning! Not sure why! Maybe I'm hearing of too many ladies that are losing this battle!!
Ok, ladies.. I’m going to post this on several threads
hoping that maybe some of you can offer some answers to the following: I was wondering why in the routine checks
following BC that the tests ordered, at least for me, are only blood work, bone
density test and a six month mammo?As I read through these threads, I do find that some of you
had recurrence in the breast, but most of the time this ugly disease finds its
way to other places thus becoming mets!!
Now to me, it seems that at least once a year that some sort of scan
would be run to check for this, and even with folks like me, who had a very
aggressive tumor, the checks should be run more often! I mean, I think my tumor showed up in less
than 3 months. My MO said that he would
only order tests if symptoms presented!
Well, I have different pains now since finishing rads and I’m confused
as to what he would consider symptoms!
When I talked to him about the pains, he said, no need to scan as my
blood work was fine! This is another
scary issue as I’ve read here that mets can present when blood work is normal
and even without any symptoms at all!
Now I’m assuming that if the mets IS causing symptoms that they would be
consistent or non stop and everything that I am experiencing comes and goes and
sometimes is gone for several days, but when it’s there, it’s REALLY
there! I mean so bad that it affects my
quality of life! And even on the days I
have pain, it may be for just a few minutes or it may be hours or it may be all
day!I AM SO CONFUSED AND FRUSTRATED!! I just don’t understand why standard of care
does not involve testing to check for mets!
And I know that some of you have told me to insist on a scan, but when I
tried this, I was told that it would be subjecting me to stuff that was unnecessary! And I know that there are some test that do
not expose you to stuff! But obviously,
those test could possibly come back as inconclusive and warrant more
test!! It seems like a vicious cycle and
I really would like to get out of it!!0 -
Oh Nettie I'm sorry u feel so frustrated but this is a frustrating disease, it's treat the same for all of us but since we all have some components that are different in our cancers protocols can differ in maybe small ways and fom Dr. to Dr. Usually u get a bone scan at the beginning and all the bloodwok and other scans for baseline of what they are fighting--from then on what ever tests u get are compared to those and u'r bloodwork thru chemo is taken every week This panel of blood work somehow shows enzymes to the Dr. that produces cells and can tell the dr. a lot. When u'r done with chemo tests are always being done, they usually don't leave things for chance and when they pressing u all over for a simple exam it's amazing how they feel 1 tiny little thing that they don't like and u'r getting a test. But usually the symtems are what they hear so much of cuz we all have so many alike after everything is done/ One time last year I had 2 bone scans within 3 months cuz the Dr. was watching something??? So usually they take u'r word for how u really feel and decide what test u need. I still get a blood panel all the time if they don't like it I get one the following week and then 1 month and they treat whatever they find and continue this aggrevation for whatever for a length of time too.U notice how most of us end up with lousy bone crap, personally I think all this stuff we got did all of the bone stuff-it's just a matter of medium, serious and severe and I know every time I say anything I get some stupid test and altho it's not cancer it's a disease of something with my bones so they keep watch very carefully specially the first few years,--I still see my onc every 4 months after all this time and told to call if anything is different that's why I'm always getting tests, I don't glow in the dark, I radiate in the dark, so then I feel like all this radiation isn't helping either--who knows. I really wouldn't worry that much about it cuz they usually watch u pretty well---Nettie this is so long I don't even know what I'm talking about--shut up Chevy--I was just going to delete this cuz it sounds so stupid, but I decided to let the whole world and all he lurkers know what this also does to u'r brain. I used to be intelligent. I did get chemo for 4 months weekly before my operation then for over a yr after weekly, so they threw everything at the time at me and it did it's job. Now they watch.
0 -
Chevy I had to leave that post in it's so silly sounding I'm LOLing all the way. What a teacher I'd make. hahaha I knew in my head what I mean but it came out like that.
0 -
MORNING OWLETTES, been working since 5:30 am. Nothing like someone coming to visit to get the body moving. YAY.. Di will be here to do the stuff I don't wwant too.
phillyoson her way from Tallahassee if she's out of bed yet. She'll be here between 4-6.Need to grocery shop......should clean the frig.....it may get done
Thrifted on Tuesday. 2 large platters---Stars and Bars --I think. 3 large wexford bowls all footed. Anything footed is always more valuable , than non footed. Punch set in federal windsor pattern, 2 covered windsor sugars, A 64 oz wexford picture(ds--beer), a sweet little handled plate etched and scalloped---will never be able to find the name. A AH Prescut large vegetable for Di. A beautiful decanter for DS------IT was a great glass day never found so many pieces in one day. Only could have been better if it was half off day. They --SPCA --does it when to much of something builds up on the shelves. Still GREAT deals.
Collecting the Winsdor for DS friend. Wexford DS, cousin, and me. Prescut for DI. A small ABC relish.
The small old upright covered sugars are great for bathrooms to use for ear cleaners or cotton balls/pads. Love crystal on the bathroom counters.
The bottles that have wire lids with the seal can be taken apart and used as tooth paste and brush holders. Looks great when you can find them in patterened and or colors that match your colors
0 -
Cami, you made sense to me!! But I must say that I have never had a bone scan! Even with all the complaining about back and arm pain!
I know I stated this on one of these threads, so if I'm repeating, sorry! This is what I've had done:
- Found lump myself
- Went to GYN
- Had diagnostic mammo, was held over for US (pretty much knew at that point)
- Had lumpectomy and SNB
- Got infection in incision
- Took serious round of Antibiotics
- Got serious GI trouble from Antibiotics
- Ended up in hospital from GI issues
- Cat scan while in hospital - only showed inflamed colon which was expected due to symptoms
- Met with MO - got plan. Chemo AC x 4, followed by taxol x 12, followed by 33 rads
- Before chemo, had chest x-ray and heart test
- During chemo, had weird pains, demanded abdominal US - all clear!
- And of course, weekly blood work during treatment!
- Started Aromasin in January
- Had my last MO appt in February - felt like he basically blew me off
- Had mammo and bone density (showed osteopenia) on March 12 also GYN visit on March 12
- Followup with surgeon (he ordered the mammo), the mammo was all clear
- Due to debilitating knee and back issues, I self stopped the Aromasin to see if the issues would clear
- Issues are clearing, will start Aromasin again on Monday, April 14
- If issues return, will talk to MO
- Constantly having issues from scar tissue in radiated breast and under arm, seeing Chiro and Massage therapist for this! So far, not much relief
So, that's my story! Now you see why I'm so paranoid, never had a PET or Bone Scan! Now I've been told that issues of the spine would show on chest x-ray and/or the abdominal US as when a patient is known to have cancer, they look extra close at things and had something appeared, I would have been sent for further testing! This was NOT told to me by MO! So I don't know if it's true!
Sorry to bore everyone - just in a weird state of mind the last few days!
0 -
Nettie u'r not boring at all. So don't ever think u can't talk openly here about how u feel. Remember I don't know anything medically, I'm just telling u my experiences, But I did think everyone has a bone scan--I know my niece, sister, cousin and I had one at the start maybe cuz cancers were of a different kind even tho they are all BC.??? or maybe cuz I'm older oh wait, my niece is in her 40's Hmm I know I've had--Mugas, echos, US, bonescans, MRI's density, nuclear crap and heart different ones and cat and pet at different times so I don't know why. all I know is everytime I see her I get some kind of goofy test and now I say nothing to try not to get them but I'll be damned when she examins me she always sees where there is pain, maybe mine is just a nut for tests. I know my Primary is another nut that I have all kinds of tests and I see these people often so that's why I really hate going to them. haha the only ones I don't get are mammos and paps-----U said u asked u'r Dr. about it, ask again and ask why she doesn't want a baseline of what u inners are like. And Nettie mayb not everyone gets them I of course can be totally wrong about everything cuz Teka didn't get a bone scan???? Please don't go by me, Sas will b getting to really post and she'll get on this and no doubt explain so so so much better than I ever could and she knows what she's talking about, I don't.
0 -
And that's another thing, my PCP, well that visit was almost a joke! Just skip this if you are tired of hearing me whine!
Went to PCP because MO said blood pressure was high!
By the time I saw PCP, I was having other issues - vertigo, arm pain, left hip into leg pain!
So the nurse takes all the info and checks my BP, low and behold, when she checked it was normal!
Dr. comes in, I give him the spill and I swear he never touched me, he had me stand up and bend and touch my knees, that was it, did NOT look in my ears, eyes, nose or mouth, never touched my neck ( I also see him for thyroid meds)! He then proceeds to tell me, since MO said BP was high, he would give meds for it, and since I was having vertigo, he would give script for Antibiotic "in case" I had a sinus infection! GO FIGURE! Made me feel like a big old hypochondriac!! I swear I don't know how I find these Drs.!! I'm just so outdone with it all!! I need to feel better!! I felt better while on chemo than I do now!! Who else can say that?
And I know, I need to find a new PCP, but with my work schedule and where I live that is easier said than done!
0 -
Nettie, I agree it is frustrating. The only reason I had a Pet Scan was because of the 6 positive nodes, matted & growing cancer on the outside. I actually said NO thanks, did not want to do it. BS convinced me it was necessary.
Now, I am told, your done, no more tests. I asked PCP about a 3D mammogram, I would need to go to the big city. She said NO, does not improve my odds...hmmm....why can't someone that is stage 3 get a little more testing?
Now, I cannot even get the MO office to call me back about a biophosphante tx...& they called me to say she would do it, call & make an appt... Arrrrrrggggg
0 -
Granted that my BC was early and not especially aggressive, but I have had no testing beyond a yearly mammo and 2 x year manual breast exam. I'm a little paranoid about the lack of testing also.
0 -
I wonder about some of these dr's....it can be so frustrating! I had a PET scan right after dx, I was in such shock that I didn't even question what or why I was having it done. It was only a couple of months ago that they did this because of my stage 3 dx.Nettie I'm sorry you dealing wtih all of this crap!!
Hole-you have a new dx? I'm sorry I'm out of the loop ((hugs))
So we don't get any further scans after tx's are finished? This is a concern to me...how do we know anything is working or has worked?? I gotta talk to my MO about this!
0 -
Apparently there is no set standard of care for before, during, or after treatment. I had so dam many tests before, I felt like pitching a tent in the hospital lot. Now, my PCP is assuming the MOs place. I just put myself on a 1 year check with BS. I did have a DEXA after all was done. PCP will be watching tumor markers. No further tests scheduled, no Mamo, nothing to slam.
I've read here that if a pain lasts 2 weeks, get it checked. My former NP said bone mets HURT, and it doesn't stop.
0 -
Well, no doctor has ever told me that bone mets hurts or doesn't hurt or stops or don't stop! They have told me nothing! I will tell you that the pains I'm having have lasted well over 2 weeks, however they are not constant!! So maybe that is why they seem so unconcerned!
I just don't know anymore and makes me want to throw my hands up and just say F*** it all!! I'm so tired of second guessing my pains and worrying when the doctors think it's nothing to it.
Also from reading on BCO, I found ladies diagnosed with mets when they presented with absolutely no symptoms and also blood work was fine, so go figure! Outside of testing, when or how would their situations been diagnosed! Would it have been too late? I'm told that once symptoms present, the mets is usually well advanced!
0 -
0 -
Hi all,
Hi Ho - I'm really sorry about your friend, it is so particularly hard when someone is young.
I'm going to chime in on the scans question because it's one that I had for awhile too (at this point I'm like Cami - I told my doc I really don't want to see any docs at all for anything for at least 2 months, he said okay just get your mammo so I did and I have a callback - he wrote me and said please just do this one more thing and I will leave you alone). Anyway here's what I understand to be the case or have been told to be the case & it could be wrong.
As far as getting a PET scan at the 'beginning' - they will do one if there is a significant risk that the cancer has metastasized beyond the local area. And they do this because it will change the treatment protocol if there are distal mets. This is the basic reason for tests of any kind - to determine what treatment you should or should not have.
By far the single most predictive factor for Mets in distant locals is lymph node involvement. Fluid from the breast drains into the auxiliary nodes, so if the cancer has lodged in the node it means both that it has traveled and that it has the capacity to live in different environments. If it's not in the nodes, then the risk that it is in distal areas of the body is relatively low. So the 'standard' for pretreatment testing is the degree of lymph node involvement, there may be some other instances when a PET is done - ie. the tumor is close to the chest wall, but otherwise the increased radiation is not considered to be warranted. Exposure to radiation is a serious thing - particularly for a cancer patient because radiation has a cumlative effect and a cancer patient is likely to undergo (over a period of time) more tests that will expose him or her to more radiation than the normal person. The type of scans that one would need to determine location & metabolic activity (what you need if you're looking for mets) are PET/CT & you're talking a lot of radiation with there - a chest CT normally has the same amount of radiation as over a hundred chest X-rays.
As to having regular scans following treatment - the 'standard' is not to to do scans unless there are symptoms that suggest mets have occurred. The first reason is to limit exposure to radiation - imagine your doc telling you that he wanted to expose you to the radiation of one hundred X rays every year for the rest of your life - we're not talking Chernobyl - but that's pretty significant. Think about what RADs does to your breast tissue & how changes can occur years after. The second reason given is that it is very very rare that finding mets 'early' has a great deal of benefit. The benefit of detecting BC early is that if BC is contained to the breast, it won't kill you - because your individual breasts are not necessary for your survival. That is why surgery is the primary treatment for BC that has not spread beyond the nodes. This surgery can in fact 'cure' you (you don't know whether you have been cured or not, but there is a good chance that ALL of the cancer can be removed from your body if it has been found before spreading elsewhere). Other treatments (RADS, Chemo, AIs, SERMS) are basically prophylactic in nature - they are done to treat cancer cells that may or may not even be there. When BC metastasized to distal locations, it tends to lodge in a lot of places (although they may not show up on a scan because they are too small). So surgery is generally not the primary treatment. The primary treatment is some combo of those prophylactic treatments & the thing is that the cancer cells eventually find a way around these treatments - so the treatments have a limited time span of effectiveness regardless of when you start them. If you use up the arsenal of treatments earlier all that has really happened is that you've used it up earlier (that's how the argument goes anyway).
0 -
Oh, and so who IS this making all kinds of sense? OMG it is Cammi and Lilshit! Who knew? I have to go back and read all this that is going on with you Nettie so I can fix you! Because I have so much knowledge and experience and so on and so forth! Just wait right there girls..... I have to go tend to DH....
HE is soooooooooooooooooo much better, that now he scares me! He shaved, cleaned up, and is walking with my Grandma's cane! I mean walking like a Penguin, because I told him to do that... but he is soooo much better! So I am really happy, and he is REALLY happy!
0 -
thanks Smaarty, I needed that! So, are you safely home now?
Thanks for posting Teka, I need the reminder it's ok if my house isn't perfect
Nettie, yikes, that's a lot, I'd get lost after a couple of those steps
Blessings, how did the dentist visit go?
Chevy, great he's feeling better. Walking like the Penguin, no big deal. Especially if he got all pur-teed up for you.
Sassy, hoping you're ready for your guests. (Don't know why, but I wanted to type: ready or not, here we come). Relax, enjoy and have fun with Phyllimahere and Spookiesmom. Hoping the visit isn't too many females for DBF. I'll ask for pix - especially before everything that happens in FL stays in FL.
0 -
Ladieeees! Happy Thursday...
2TA - Dentist visit went fine. I thought it had been two years, but my last visit was a year ago. The Hygienist was pleased at how well I take care of my teeth. Dentist said all Xrays looked fine.
Decided to go to Joanne's for Easter decorations afterwards (seeing as how it was so EARLY) and almost threw up when I got there. WTH????? I suddenly remembered that I took two HUGE Erythromycin at 7 am... just a prophylactic antibiotic treatment before cleaning, thanks to implants.
Went home, made a scrambled eggie on toast with a big ginger ale... now I feel like I can handle Costco this afternoon.
DANG - IT'S HOT HERE IN CALI....
0 -
Thanks ziggy!!!!
And chevy, I'm waiting.
0 -
Phillyois here5pm and weare ON the deck YAY SHE MADE IT
0 -
Well Holy Moly Guacomole! I assumed there would be more scans after tx's, thanks Ziggy for the info. I just assumed they would do something to see if it had worked, but I can see how there is probably no way to really know for sure. ugg...scary chit this cancer is.
Hole-I forgot to mention earlier that I was sorry about your friend too. Was she on BCO? ((hugs))
0 -
got home yesterday just intime to make the weight management class I'm signed up for. Get the "food" next week and start! Little anxiety over starting this but also a little excited too. I sure hope I have the will power to do this. Really want to lose 40-50 lbs., seems like a lot. By end of summer I should be skinny! Last summer I couldnt swim, this summer not eating. But to a better version of me!
How can you tell if a boob is slipping? Anybody experience this? Mine are textured and not suppose to slip. Maybe I'm being paranoid?
Hope you guys are doing better or having fun. SAS, post a pic please. Nice to see who you're talking to all the time.
0 -
Okay Sass and PhyllitroublejustWAITING..... be careful going anywhere with her Sass.... You know.... that ankle monitor and all.... Did she ditch big Alice? And Yes! Take a picture of you too hooligans!
Netti, I went back and looked at that bunch of stuff that you have gone through... I don't think I can fix you.... not now anyway.... I THINK, and this is just my own experience, that when we take Antibiotics it screws up things in us.... and SOMEtimes, like with me, and Sulfa, AND Pennicillin, we can wind up in the emergency rooms! And these foreign substances that we take for infections, etc, just hang around IN there, and wreak havoc on OTHER parts of us!
And you have gone through entirely too much for any one woman! So just don't do that anymore..... If they want you to take something, tell them to "Hold on.... I have to run this by my team first!" And then come here, and see what WE, the EXPERTS have to say about it.....
Smaarty! Your boob is slipping? OMG..... Put some Duck tape under it, and run to the Doctor's! That just doesn't sound normal.... Geesh! Now I have to fix you AND Netti!
DH is walking ON THAT DAMN FOOT! He is limping, but is doing so much better.... I tell him to walk like a Penguin.... that's what they told me! But we are both so happy that he can put weight on it! He can't have my flowered cane.... He can use my Grandma's.... But thank GOD he is better! So I fixed him anyway.... Now I have to fix YOU guys! xoxooxxo
0 -
Smaarty, from your bear photo, you looked like a normal, healthy weight.....40-50 lbs ? You would be rail thin....I do hope I can keep the weight off. I weigh now what I did when I was 25... Only benefit of this stinkin' cancer.
Tang, same dx as always, lots of bursting nodes. He only took 7, he does not like to take many, as the problems with lymphdema. He believes the chemo will take care of the rest.... Hope he is correct...where are you right now, # 4 coming up?
Thanks for the comments on Mary Ann passing. She was not on BCO, but would be pleased that we all wish her DH & DS well.
Sas & Philyiss, look out, here comes trouble.... Wish we were all together for a evening of laughter & fun out on the deck...
Welcome back LMG
Hello to all, BBL...
0 -
0
-
0 -
Oops....
0 -
Hey girls back in hospital again.really scared but looks like like it's a bad pneumonia. Keeping me prisoner while running iv antibiotics. Better than the alternative, I'll take it!
Hugs to all
0
