Calling all TNs
Comments
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rachelvk - I had a really bad cough for many many months after treatment, even had a chest xray. I think chemo does something to the lungs, ribs area. I used to massage my whole chest and that helped. Finally, the cough went away after a very long time. In my case, it was definitely the aftermath of chemo.
Luv - So good to hear that you are doing well on the new drug. Hope it continues. Thanks so much for being a pioneer for all of us, we are very proud of you.
Kathy - Congrats on your 2 year anniversary. For all the newbie's - see there is plenty plenty of hope.
LRM - thanks so much for reiterating the fact that no one, no matter how close they are to us, really understand the shock and change we have gone through in our lives except our BC sisters.
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Marianne stay with us
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Thanks for the support, Lovelyface. I'll hope that it is from chemo.
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Rachelvk--we are here...let us know what happens. {{{{HUGS}}}}
Maggie
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Doreen - How 'bout that video!!!!!!! IT IS SO TRUE. Love it love it. Thanks for sharing. I'll be passing it along.
rachelvk - Thinking of you. Listening to gut is good.
BernieEllen - I went off FB a few months ago. I'd consider signing up again if I knew how FB is different from this forum.
Find some joy today Jan
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Hugs to all you TN ladies. . . my prayers and good thoughts are coming your way.
I am 1 week from round three . . so this is my "good" week . . . half way . . . trying to CHOOSE to be positive, look at the bright side of things, and not dwell on the bad stuff . . . it is afterall "partly" a mind game, right?
So, today I am thankful that it only took me, like, 5 seconds, to "do" my hair . . . and I don't have to wear an uncomfortable/ill-fitting bra. . . . . there, how is that for positive?
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Browler - I had BMX, lat dorsi reconstruction, and TEs implanted. The surgery was about 5 1/2 hours and I spent 3 days in the hospital. That was probably the most major surgery I've ever had in my life, though I didn't realize how grueling it would be beforehand! Be sure to take your pain pills, and take it easy! My sister came up for awhile to help out with kids, meals, etc. - it was much appreciated.
Luv, thanks for doing this trial - for all of us.
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Fern- love your outlook!
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Are any of you sewers with lots of fabric stashed away? I have so much fabric I think I could open a shop! I make quilts, mostly wild and colorful ones, big and little. I am now making quilts for a Paul Newman camp for sick kids. They need bed quilts, lap quilts, and a specific turtle pillow, all hand made. If this interests you, it's called The Painted Turtle and is near Lake Hughes in California.
I call this my therapy. It keeps my mind on other people and off my worries. There are things worse than the f'n TNBC, and using my stash of fabric helps me and those kids. Anyone interested in joining me?
Jan
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Passing HUGS around to all.
Cocker wonderful news about your daughter.
Inmate- Thinking of you.
Marie- you have the right to be upset you are newly dx'ed. it is only normal we all had similar feelings in the beginning.
Hope (((HUGS))) sending NED thoughts your way. It does help to have someone with you. I can still remember the moment when I was dx'ed.
Lovely face- we have missed you.
I am two years out ladies feels good and scary at the same time. Hopefully normal will come along someday.
Thinking of you all.
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Hi Ladies-
Cocker, so good to hear good news about your daughter-
Linda- Your words ring so true. We understand what we all are going through. I hate the pat on the head comments from those that I love.
I forget who mentioned the cough. I have had an ongoing issue with a cough. It becomes very metallic tasting which I feel is allergies.. Lets hope. I have my first mammo coming up since completing treatment on my birthday. Yes, I scheduled it that way. I had my mammo on the 10th of Oct last year, so I decided to get it done on my birthday, the 2nd of Oct. I will be celebrating afterwards.. I just know it!
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I just know you will be celebrating too Lory!
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Yodie - Thank you so much for sharing your thoughts. That is a great way to look at everything. I'm trying - it just gets hard some days.
In fact, thanks everyone for their comments and support. I'm feeling better today, but I'm sure I'll be holding my breath until the results come back. It also turns out I have polyps, so I'm scheduled for a D&C next month, with an extra look to make sure that nothing's brewing there. I think the plumbing may have to come out sooner than I'd like. I'm in chemo pause, and hoping that's only temporary. Although I'm brca2+, my gyn onc recommended waiting until I'm closer to 50 to have the ovaries out. I don't want to wait that long, but I'd like a few more years if I can. Planning the colonoscopy soon, too, and then it will be time for another endoscopy to make sure my Barrett's esophagus hasn't progressed. Starting to feel like I'm on defensive mode against the majority of my organs.
Brower - A cruise! Super. That really is a good way to get away after all this cr@p.
Painting - I so understand about the books. I just moved to a new apartment, and while my packrat tendencies are still high, I am much more willing now to look at something, even if it has some personal meaning (well, most of my books do in my perspective, which is the problem), it's easier to ask "Do I really need this at this point in my life?" My BF is another story - he closed his bookstore a few years back and I suppose he still harbors hopes/plans to do something with his remaining inventory, but for now they're in his apartment and storage. It's made my invitation that he move in with me (hence the new, 2-bedroom apartment) an overwhelming thought for him. Time for some serious intervention.
Fern - enjoy your 'good' week. How many rounds are you getting? You can do it - and finding those 'silver linings' are really what keep you going.
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fighter...hooray for you at 2 yrs out....So good to see that!
Maggie
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Oh..Marianne...please don't be upset...I dunno...on this thread we deal with reality and the reality is that sometimes some of us don't make it....it is very, very hard to accept...its the reality of breast cancer..we can't go around saying everything will be ok because it just may not be ok...some of us have been on here for along time and have seen our friends not make it..it is hard...we have also seen our friends make it and move on to having their lives back again...we are all here to support each other whatever the outcome...
It is taken me a very long time to accept this...like maybe just now..the thing is though we do accept the reality..we are here for each other..in the good and the bad.
And welcome to this thread girl! We will be here for you..plan on laughing alot...I know I do!
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Hi all, i haven't been here for a while and have a concern and wonder if anyone else has gone thru this? In the last month i have had 2 rapid heart beats...the first one was short, but tonights was at least a minute. Could this be from chemo? or just anxiety? I had avastin, ac, and radiation on the left side...would the side effects happened quicker...i completed chemo may 2011 and rads oct. 2011...going to call doctor in the am, but wanted imput from all you ladies...thanks melissa
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Hi everyone! Can you all tell me how you determine your cancerversary? Do you go off of when you finish all your treatments or when they told you that you had cancer?
Lisa0 -
When I finished treatments, surgery, then rads, my doctors said i was cancer free!
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Lisa, I count from the day I was told I had this demon. I am almost 1 yr out-- fought like hell and am here to say I am NED!!
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Rachel--keep us updated and know you are in our thoughts and prayers.
Lisadi--Ive been wondering same thing!
Moe--Ive had heart palpations too and my surgeon did ECG. Some chemo meds can impact the heart. I would ask your doc for cardiac testing, if it would help put your mind at ease.
Can anyone advise on dis/advantages of MRI versus CT scan versus PET scan and bone scan? And, what protocol are your oncologists using, as far as when you have imaging studies done again, after chemo, surgery, rad, etc? I thought I read somewhere that TN's should have imaging studies done more often than other BC.
Also--I'm told tomographic imaging, rather than mammograms are best for dense breast tissue gals. Obviously, if you've had DMX you won't get mammograms anymore, however, I thought I'd throw that out there for those that still need mammograms.
For those of you that have daughters, how have they/you found support, when they fear losing their mother? My youngest (19yo) wound up hospitalized with severe depression, afraid I was going to leave her. My oldest (22) told me she didn't want to be around anymore if I died. I raised them by myself for a long time and we are a strong triad. Is there a book or something I can have them read? Or, have your children gone to group thx? I'm more worried about them than me, although they seem to be doing much better since my hair is growing back, treatments and surgeries are over. However, I know it's in the back of their minds. I want us to go on a trip, but need to pay off some medical bills. Advice?
Thinking of you all!0 -
Lory - I can't wait to raise a glass to your great news!
Rachel - maybe BF can sell some of his inventory on Amazon?
I had a good 6 month check in with both my BS and Ortho today.
Annie - I hope your hands are getting better. Are you back to typing?
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I am so very new to this BC journey and am finding it very frustrating. I had my biopsy done on 8/10 and got the results on 8/14. MRI is done and now I'm being told I have to wait for genetic testing before any treament. When I went for a second opinion I was told that not only did I not need to wait, but could have participated in a clinical trial if only I got started a few days sooner. Any thoughts on chemo prior to surgery vs surgery then chemo? Two docs with different views both saying there view is best for triple neg. I am only 36 and raising two neices as a single parent. I have to do what gives the best chance to be here for them.
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Hi Jan the facebook group is to open our friendship above and beyond the BC. It has been made a secret group so that people cannot relate anyone back to the forum. As you know the forums are open for anyone to read.
All are welcome to join the FB group if they would like to. PM me if you want to join.
Love
B.
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Lisa--everyone counts differntly...I from my date of DX
yodie--my 19 yr old is also riddled with anxiety. For me to help her I try my best to never say negative things about the cancer, treatment or my own self image after the bmx. I stay focused and positive for her sake. If you can do it may I suggest some counseling for the three of you to go to together. Make sure your daughters know that you want them to continue on even if something were to take your life now. None of us knows what tomorrow may bring so always grab life by the horns and hold on tight because it can be such a bumpy ride. {{{HUGS}}} to you and your lovely daughters.
Maggie
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Sjayne: Sorry you had to join us here, but you will find great support from all the ladies here. First let me say, that the first few weeks after diagnosis are the worst! The anxiety, the not-knowing, the wait for treatment can be unbearable. Most of us here will attest that once a treatment plan is in place, you will feel a whole lot better. Second, it is always good to get a second opinion... and weigh your options... even though TN is an aggressive form of BC and you don't want to wait too long. Did you talk with a breast surgeon and/or MO? Did you feel better with one MO over the other? You will be an MO's patient for several years (even after treatment is concluded) so it's important to feel confident and comfortable with that person.
As for surgery versus chemo first, there are advantages to both. With surgery, the cancer is removed right away and chemo is used to mop up any stray cancer cells that may be floating around. However, with chemo first, you and the doc can actually assess whether or not the chemo is working on your tumour (shrinking) and change course if necessary. That's a big positive for TNs like us because chemo is our only systemic weapon and it's important to get it right. Larger tumours can also be successfully shrunk so that less radical surgery can be performed. You will find ladies here who have done chemo first (now much more common) and others who did surgery first. If you are waiting for genetic test results, it may make sense to start chemo and make your surgical decision later. For example if you test positive, you could decide then whether or not you want prophylactic surgery to reduce the odds of another cancer. Docs and genetics counsellors can advise you at the time.
Finally, treatment decisions are very personal, and you need to act with your head and your heart on the basis of the information your docs supply you with.
Hope that helps. And good luck. We're all here for you.
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Sjayne,
There are peer reviewed studies comparing the neoadjuvant (presurgery) chemo and adjuvant (post surgery) chemo with no difference in outcomes. I opted to go with the neoadjuvant while waiting for my genetic test results. If you go for the neoadjuvant, you have the benefit of knowing whether or not your tumor responded to the chemo. They need to monitor the response to the chemo carefully. Most places do not do scans during the chemo, but I wish I had had scans or at least ultrasounds as we thought mine was shrinking because it got much,much softer, but I ended up with almost the same size tumor at surgery as I had in the beginning. I still had some response to chemo though. Because of my limited response, I opted to do another round of a different chemo following surgery for extra insurance. Making all the treatment decisions in such rapid fashion is so incredibly stressful; I remember my frustration well. Wishing you all the best, C.
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Fighter, Congratulations!!!!
Jan, I don't quilt, but I make basic things like cat beds and could probably handle making a pillow. My sister is an artist and could probably make me a pattern for a turtle applique that I could hand sew. I'll check out their website - I am becoming a fabric collector myself - all fleecy stuff for my cat beds - and I already have too many books!
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Titan your words are so on point. We need a LIKE button!!!
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Luv-I just love the pedi pix!!!, as the teeny boppers say ~COOL....
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Hi Sjayne - sorry you had to join us, but an awesome bunch of ladies where you can share anything and everything with no judgement. I had neoadjuv chemo (tumour 8+cm) and its shrunk that bugger to almost nothing (1.8cm) so for me it worked. Also chemo made my cancer ER positive (not sure of %) and will find out when I finish rads (waiting for a start date) if I go on hormone therapy. If you are given a choice though (I wasn't) it is such a personal decision that only you can make and feel at peace with. Good luck.
Hi to everyone else and hope you find your happy somewhere today.
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