Calling all TNs
Comments
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The Fifty Shades of Grey comments made me LOL! When I went for my 1st chemo treatment on 7/26, they showed me a shelf of books that I could pick from. I asked if they had Fifty Shades of Grey and the gal laughed and said it certainly wouldn't be there any longer if anyone had donated it. Well, low and behold, I got a copy in the mail on Saturday -- seems that my husband DOES listen to what I say -- sometimes. He ordered the first book for me -- no chance of getting pregnant though so I will have some fun with it...I think.
Sadly, I can't stay awake long enough at the moment to read it -- only on page 9 *sigh*LuvRVing, I want to thank you for posting your blog site. I read the whole thing -- you are an inspiration. Hugs to you!
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Feeling sad and stressed today. not necessarily cancer related. My bone scan was canceled because insurance has not approved it yet, they will, just hasn't happened yet. My sister is about to be foreclosed on, wants me to help her with...not sure what I can do for her. I can't help financially, she owes too much. She hasn't been able to find a job for the past 2 years. Yep, thats right, 2 years. I know it is bad out there, but just find ANY job. She won't venture out of her comfort zone and that is going to leave her out on the streets. Well, not really. She will be able to stay with my other sis or with her daughter, but they all have small places. She can't stay with me because I have animals and she is extremely allergic and has asthma. How am I going to help? I have no answers for her. There doesn't seem to be any welfare, she is 58 and has no retirement saved up, she is single, her daughter is a single mom of 2 kids, with no help from the father. Frustrated that I can't fix life. I can't fix a darn thing, I can't even fix my own life. How am I going to help her tomorrow? I guess I will help her write a letter, she is required to respond to the court within 20 days. There is no money to hire a lawyer, which is needed to decipher all the legal mumbo jumbo in the letter she just received. I guess I can only do my best to help.
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Dormac - I had a 64% of recurrence before chemo and rads so I suppose 50% is better but it made me a bit down to only get that.
Bak94 - what a terrible thing your sister is going through. Can she get any assistance of the state at all. You both must be out of your mind with worry. When my girl was in a similar situation because her marriage broke up and she had no job for a while we used to help out by getting groceries for her and paying for school trips but it was a hard time for her. There is a reason for this so people tell me, I guess we just have to have faith that things will work out ok. Thinking of you and hoping a solution can be found.
Tazzy - my hand is holding yours for tomorrow just like Jan's. We will all be there with you. You will be fine and everything will go as planned. Sending great big hugs to you.
JazzyJ - congratulations on your last chemo. I knew you could do it. Taxol will be much easier on you. So you go girl.
Luv - just keep away from those 50 shades of gray. With your looks you will have every male around knocking at your door. Shame on you for reading them lol.
Kathrynn - hey girl hows your neighbour who is one foot away and how is the gambling going, won anything lately. Don't you start reading those books or we won't be able to get any sense out of you.
Titan - you too, what have you won at gambling? Have you been keeping up with the olympics. I'm not much of a telle person but its so exciting to watch.
Thinking of you all and sending big hugs to all of you wonderful ladies. Annie
Big warm hugs to Inmate and Hope.
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Lory: Good to hear the liver is clear - what a relief! Hopefully they can rule out any threat from that tiny lung spot. I have something benign that pops up on scans - a holdover from some past lung problem I never knew I had.
Bak: Sorry for what you and your sis are going through. I know what it feels like to want to try to fix a family member's life, very stressful - but ultimately all you can do is lend a helping hand where you can and look after yourself too.
Jazzy: Congrats on being done AC. Hopefully you'll find the taxol easier - I know I did. And my hair started growing back too!
Fern: Congrats on getting through your first treatment. Don't be surprised if you find days 3-5 the hardest; that's when I felt most tired and achy. Be sure to rest as much as you can, but also get out and walk if you feel up to it. Physical activity - in manageable doses - really helps.
dgcote: Glad you got the ER... and hope you can get that clot under control. So often, it's all the unexpected side complications of cancer treatment that make life most miserable. But you will get through it!
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Thank you Titan...I truly appreciate your thoughts! Yes, it would be nice if everything were that easy.
Now, I need to take a poll of sorts and would like to see what y'all have for an answer. I need to know how many of you did NOT have either a PET or CT scan throughout diagnosis, treatment and through check-ups. If, like me, you had a bone scan and x-rays only. I am starting to think that I am of the minority amongst TNBC patiens who have not had either a PET or a CT but wan to be sure before I inquire with my MO. All of your input would be much appreciated!
Thank you and have a blessed day!
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mmizerak- I had a CT and chest x-rays only. Insurance denied PET (saying because I was Stage 1, it wasn't necessary). I did not have a bone scan until I had low back and rib pain about a year later. Turned out to be nothing but strain from PT.
Michelle- an evening at Cool Crest might be good. We used to live not far from there. Can't go on weekend evenings-too many teenagers and lots of fights!
Tazzy- will be thinking of you tomorrow and wishing you a speedy recovery!
Bak- I wish I had some advice. I went through this with my brother while in treatment. He lost his home and ended up in a homeless shelter for almost a year. He is a very lazy person and had no ambition to find a job. I could not have him stay here as he has a muscular disease (does not contribute to the laziness!) and my home has lots of steps, besides my husband would probably kill him- my husband can't stand laziness! Anyway, his disease progressed and we were able to get him into an assisted living facility. He has caused me a great deal of stress in my life as he is ungrateful and thinks I (and the whole world) owes him something. While I doubt this in anyway mirrors you sister, just wanted to say I know how stressful it can be to deal with family members troubles! i hope a solution presents itself- and soon!
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spoke too soon yesterday,hair is really falling out,its long and thick and instead of finding dust bunnies, i am finding hair bunnies. Have an appt to get it cut.But, after seeing everyone's "topless" pics, i am ok with it.Focusing on what i am thankful for.:)
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Thanks all for your wonderful well wishes... I know you are there with me tomorrow.
mmizerak - I had chest x-rays, bone density scan, mri and CT scan just after dx. Good luck.
I know I cant answer you all but am thinking of you nonetheless - wishing you all good, better days with as little stress as possible.
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bak--so sorry that you have this to cope with on top of all that BC throws at us. I wish a could offer words of wisdom but I have nothing. Is there no assistance available where you are through the government??
Cocker...so happy you are back. 50/50 does sound a little scary but you are a tough and scrappy lady who will come out on the sunny 50 side!
Le sucks--really bad. Really not liking the reality of sleeves daily and MLD...
Tazzy--we will all be here with you during your surgery. After chemo it will be a piece of cake--at least for me the surgery was easier! Hugs and strength as you face this new page.
mmiserak--I have had 3 pet scans since DX in August last year. One right away, then one in Jan when chemo done then another in April after getting an elevated CA 27-29 result. My Onc loves the scans and I will be having another in Oct when i go back for my 3 month follow up...docs are all over the place with this. Some scan some do not unless you present with symptoms. My onc says at least with the scan we find it earlier if there is mets and can fight it down. Sometimes it is an insurance issue also. Have you flat out requested the scan and been denied an order from your onc? If so perhaps change the approach and let them know the anxiety you have by not having had a scan and TELL them you want one. Or maybe your primary care doc will order one for you??
Maggie
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almost forgot...1 year ago today was the day I found the telltale lump and my life changed dramatically...wow..how quickly a year has passed by.
Mags
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mmizerak - I had a PET/CT, chest xray and MRI with my recurrence last year.
Bak - so sorry about your sister's plight. That's a horrible situation.
Tif - there's always ChuckE Cheese - they pretty much keep the riff-raff out of there. And it will be air-conditioned!
I just went for a 40 minute bike ride. Now I need a shower before the grandkids descend upon me for the afternoon. I hope the skies clear up; otherwise, lake activities won't be much fun!
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Hi Ladies; I am nowhere near caught up on reading all the posts. But just wanted to let you all know. I made it through my first round of AC. Getting the PICC was definately the worst of the experience. I suffer from a phenomenon called Reynaulds, which is an over-reaction by my veins to cold. Instead of constricting they shut down completely. I was to have the PICC in my right arm opposite to my surgery. The IV tech tried three times on the right side eac time the line was introduced my vein would flutter and close. So she switched to my left side and trested it more like an IV putting the needle further into the vein so it had less time to react to the line. Worked like a charm but all in all a 1 hour procedure took 2 and a half hours. But I got an Ativan out of it so was feeling pretty good the rest of the day.
My infusion yesterday went well. Again some problems with the Reynaulds cause pain when the cold drugs were introduced so they kept piling me up with hot blankets. The burse said I set a record using six blankets in all.
Today tired and some stomach and headache issues. Not really nausia more like indigestion. Trying to drink lots and eating little mouthfuls of oatmeal seem to help that out. Only got 2 hours of sleep last night so going to my GP to see if he can help out with that.
Lots of love and hugs. You all gave me great strength and knowledge. The nurse was amazed how informed I was. The onco nurse didn't even know about the Claritin for the bone pain after Neulasta but the MO did and he said give it a try after I get the shot on Friday.
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wow ,can't believe in this small rural area i live in i had all of these done,dx.in 2005-2006 had pet scan,ct.,mri's and anything else u can think of still dotriple neg.very rare b/c though onc said i will see him the rest of my life,great fun and he's always running tests,of course that doesn't help with the bills.....ARKIEMAMA
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mmizerak: I have not had any PETs (they are not done here except for advanced cancer cases, for a variety of reasons that in my opinion are very valid), nor CTs through treatment. At diagnosis, I got abdominal U/S, lung xrays, bone scan and a MUGA at chemo start and finish. I suppose these scans might have been escalated to a CT if anything suspicious showed up. Since treatment, I only have scans if I have worrisome symptoms - hence a neck CT for enlarged nodes and bone scan for back pain, both of which turned out to be unremarkable.
In my opinion there is a very real downside to continuous PET and CT scanning for early stage BCs (false positives, excess anxiety, unnecessary radiation), and it's interesting that in single-payer, not-for-profit public health systems such as Canada's it's generally not done. Hope I haven't offended anyone - I know some women like to get scanned for peace of mind, and others prefer to forego the anxiety.
Tooky: Glad you made it through, and sorry to hear the PICC line was such an issue - good thing it's in now and you don't have to put up with vein injections all the time.
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congrats Tooky...the hardest one is behind you!
No offense Luah...we are all different in our preferences for sure. I personally like the scan behind me once it is done.
Mags
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Tazzy -- wishing you luck tomorrow as you head into surgery. I only had a lumpectomy so I cannot speak for what you will be having done but, the day of surgery, there was a peace that came over me and I was not scared or frightened in the least. I'm thinking that I was glad to get it over with an go on to the next step. I'll be thinking of you...
Mmizerak -- I have not had any scans at all, and my MO does not plan on doing any. I keep a journal of any aches and pains I have and he will address them...his feeling is that the scans affect your quality of life. I said that I was worried about becoming a hypochondriac and he smiled -- meaning, I think, that that is normal and he has ways to weed out the real issues from the not so real issues. Unfortunately, like you, I have a very high tollerance for pain and worry that I will ignore a sign when in fact I shouldn't -- this is a discussion I will have with my MO at some point in the future.
Bak94 -- I'm sorry that your sister is going through the foreclosure but, in her defense, I too have been unemployed for three years (3/31/2009) and get close to a job but "no cigar". Companies just do not want to hire us older people -- trust me -- I just turned 62. I know that I am very lucky because I do have a spouse with an income and insurance but others like your sis are not so lucky. My mother-in-law says "I would just take any job" but, it is not that simple. When you take just any job, it takes away from the time you need to look for a real job. Job search and BC are kind of the same -- people like my MIL say things when they really do not understand and have not walked that mile in our shoes. Good luck to you and your family, I hope that things come together for all, and soon.
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Thank you for all of your responses - quite a mixed pot, go figure! I guess I will just try to follow my gut and when that isn't speaking clearly, I'll follow my oncologist's lead. There are a few questions that I am definitely going to have addressed before I relax completely but hearing all of your opinions/experiences really helps.
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Received my Neulasta injection today - I am a CHICKEN for shots, so after my fear-tears, it was over. I requested the shot to be warmed (they had already done that) . . I asked about getting it in my stomach as Sylvia suggested, the nurse said that they never administer in the stomach at this place. I haven't been there long enough to KNOW for sure, but feel confident they are competent and caring . . . so, in the back/fatty part of my upper arm. No problems. So far, no side effects. God is Good. Thanks for all the good news from you who are having anniversaries of note. This is WAY encouraging to me, a NEWBIE.
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Christina19 - Thanks for the link to a very hopeful site. I'd get in line for that drug combo if I could. Very interesting. Jan
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mmizerak: At dx, had a PET scan, bone scan, breast mri. Had a chest x-ray after chemo/mx to get my approuval for the metformin clinical trial and another abdominal scan and US last march because of stomach issues.
Good luck with surgery tomorrow Tazzy!
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dgcote-the same thing happened to my mom. Blood clot in the arm from her port. That thing never worked right for her.
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So sad. We just lost another triple negative sister-blondelawyer. She did not post much here but had lost her husband to cf the year prior to being diagnosed. She was 34. A beautiful, bright woman. Never had a chance to enjoy her career that she worked so hard for, being a lwayer. I am heartbroken. She went to the same cancer center I go to, but I never met her.
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Thank you all for your support with my sister. Thank you pinky, you are so right, I don't quite get it because I have not been there. I just don't see why no one would hire her. I do think age discrimination does exist. She is very good at what she does, and it would be hard for her to get a job in something she has no experience in. The loss of a triple negative sister puts it all in prespective, my family will stick together and do whatever necessary to help my sis, it will be ok.
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Lory - congrats on the test results. Have you had a previous scan done on your lungs? I had 4 nodes on my lungs pre-tx, and when they checked post-tx they hadn't changed, so they weren't concerned by them. They aren't planning in checking them again, but my PCP says he will.
dgcote - How scarey that must have been for you. Wishing you clear sailing from here on.
Tazzy - schooch over on the table, I plan on giving you a big hug thru the whole thing. Also, take your pain meds if you need them!
Cocker - I'm so sorry and sad about the 50/50 odds. (Geez, couldn't they at least said 51/49). I'm voting for 50 Shades of you'll kick it to the curb my spunky little friend. Already read all the 50 Shades, lol. No fun or gambling here. I'm busy this week being a sh*t mover this week. Have to clear areas so they can drill for for the termite poison. Spent yesterday clearing some shit out of Mom's spare room, to make room to move shit from porch to spare room. I swear she never threw anything away her whole life!!!!
Jazzy - congrats and enjoy your visitors. The joy of loved ones is the best medicine.
Fern - *waves Pom-Poms *. Glad it went well
Jan - good luck with your US tomorrow.
Pinky - what a sweet surprise from your hubby.
Bak94 - sorry your in such a difficult situation. Maybe your State Bar Association can give you a referral to an agency who can give her some free legal assistance?
Bernie -loved the visual. Knew I was old when I realized some of the positions in 50 Shades would
put me in the hospital.
Christina - thank you, link was good news.
Mmizrrak - pre-tx: CT of chest and abd, bone scan, breast MRI (no PET). Post- tx: Breast MRI and chest CT (only because of nodes). Will have no further testing except an annual mammo.
Tifj - hope you and the wee ones get a break from the heat.
Fishinurse - (HUG)
Mags - when I'm tempted to complain about the heat I remember all you ladies who have to wear sleeves.
LuvR - could you bottle some of that energy and share?
Tookybum - Yeah for chemo one down. Your MO would probably help with the sleep meds.
Arkiemama - great to hear from someone 6 years out and doing well.
Luah - no offence, good to hear another perspective.
Everyone have a wonderful day, I'm off to shovel shit. ( even worse, it's a glassed in porch, think heat like a greenhouse!)0 -
Thanks Christina for the link. It sounds promising. I wonder why they say TN is metastatic as if ALL TN is metastatic? I also wonder how they test to see if that genetic marker is disabled? I guess we will find out more when they do further testing.
Mmizerak - I had a CT/PET scan after diagnosis when my nodes started to become enlarged. Thankfully, it was neg. I haven't had one since and my doc's don't order them after treatment unless there are symptoms.
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thank you bak for telling us about blondelawyer...she was in my august surgery group. sadness indeed abounds as we all mourn the loss of our sister who was stolen too early!
Mags
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Bak94 - I lost my job of 12 years two years ago also. I cannot find a good paying full-time job. I am a part-time vet tech for minimum wage and cannot help hubby break even on the bills so our savings is going down. I was a network (computer) engineer with a big salary. I was a legal secretary before that for many years. I cannot even get anyone to call me and I have been sending out resumes everywhere. I think that my age, lack of a degree (I self-taught and worked my way up to the top), and them thinking I am "overqualified" are all working against me. I feel really horrible and useless some days. Thankfully, my family has held a couple of fundraisers to help pay the medical bills. It sounds like you and your family will support your sister through this but I can tell you, it is still a tough economy to find a job when you are older.0
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Thank you Bak for letting us know. Blondlawyer - another sister gone way to young, but I hope you have been welcomed by your husband and are in a place of joy.
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