Calling all TNs
Comments
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Congratulations Inmate for the wonderful news.
I am DH of my 29 years old wife who was diagnosed with TNBC in Nov 2011. (She is going through Neoadjuvant chemo right now.). I have never posted here but checks this forum almost 20 times every day. With the recent sad news about LJ and Suze, I was feeling so very heavy hearted and was praying since last 2 days that you should good the BEST news possible. Just saw your message and finally could not resist posting my first post in bco site.
I wish you all the very best and would sincerely hope that you would do even better for decades to come.
Have a wonderful day dear ladies.
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A little grammar help here- is it recurrence, reoccurance or another spelling???
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Inmate. Just breathed a huge sigh of relief for your news. So sorry you have to go thru more treatment but so thrilled it hasn't spread!!!
Welcome Youngmommy, so sorry you and your wife are going thru this now. Please post as often as you like and keep us posted on your wife's progess and surgery. Good luck with everything.
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Inmate - Wow, Wow and Wow! I am so glad that is has not spread. It sounds like it is a new primary to me, which is 100% curable, which is what I hope it is. Even if it is not a new primary, then a different chemo regimen should totally bring this under control. This is the best thing that happened to me today!
I have been thinking about our beautiful friend Suze and I must say I miss her so badly. She had such an amazing talent of putting things in perspective, always with a positive answer. She did it so brilliantly that even if it was the worst situation, her answer would make one have hope.
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Lovelyface, I think I have to agree with you. Best thing to happen to me is hearing Inmates news! Just so relieved that it hasn't spread at the moment.
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YEAY INMATE....Your news is the best thing that happened to me today!
Welcome Young Mommy!
Lovelyface and the rest of you..thanks for the 3 year wishes..I can say that my mind occasionaly goes to the dark place..but I try to not let it ruin my entire day...I had to laugh at the 90 year wish though..wow...that would make me the oldest living person around...
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Agreed!!! The best thing that has happened to me is hearing Inmates news!! Sooo happy for you
Welcome Youngmommy, sorry the 2 of you are having to deal with this! I hope she is faring well through her treatment and I will keep you both in my thoughts. Please do not hesitate to post often and reach out. Good luck!
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mccrimmon, sorry to hear that you are also experiencing some back discomforts. I have become really quiet these days at work, suffering silently, not knowing really what to do, as I have one thing after another. It is non-stop. Before one thing can get better, another thing pops up. First it was the neck. A nurse friend of mine told me to hold the area, push deep with your fingers and then breathe in and out. It is helping alot. The pain has become less so I have hope that this is probably just a muscular thing. There are some normal degenerative findings on my cervical MRI which the Ortho. will explain to me on April 10th. The MRI was only for the Cervical only (upper neck area).
Regarding my backpain, I have to explain: I was diagnosed with BC in July, 2010. Prior to that starting in 2008 I had been running to doctors telling them about this back pain or "looseness" as I used to call it. I had every single test done under the sun, labwork, including tests such as testing for heavy metals, allergies, vitamins etc), neurological testing, even sleep study. There were no findings, except they told me I had a mild sleep apnea. My MRI's of the thorasic, lumber and cervical spine showed just normal degenerative changes. The neurologist told me it was probably anxiety which comes to women of menopausal age.
What happens is that when I wake up, the back pain or this "looseness" of limbs is not there. It starts by the time I take a shower. My legs and arms feel like they are getting separated from my body, they feel loose. My back starting from the neck all the way down hurts. I guess I can feel every single degenerative changes in my spine. I also feel like I have breathing difficulties. While going through this, I am 100% convinced it is my back and that I need to go and stretch or do yoga or something. However, not always, but mostly after lunch, the pain and looseness completely vanishes. It is as if my back had never ever hurt before. It feels like it is totally mascular during the pain. But later, I realize it could not be mascular, as my back is totally fine. I can bend, run, move just fine.
So in 2008, this started and all through 2009 I was running to doctors. Then in 2010, I was diagnosed with BC. During treatment and afterwards, I never felt this once. I was taking the anti-anxiety pill for sleep. Now just around last week, this "looseness" has started once again.
My fears are - since this happened to me just before cancer diagnosis, could this be cancer and is this how I feel it in my body? Will I ever be able to know what this is.
I have a few theories myself. It seems to me that when I reduce my calories, there are some hormones which are not being produced. I looked up Addison's disease, however, I don't have all the symptoms of it as they mention, for eg. dark patches on your skin. Didn't MBJ mention this disease in one of her posts. I am being referred to an endocrinologist to do a workup on this theory.
The other theory I have is that I always seem to have blood pressure which I feel is very low for a woman my age. It is always like 117/62 or 120/80, or even 110/60. I feel that maybe my blood pressure gets too low, although doctors love my numbers.
Does anyone have anything like this happening to them? So sorry for the long post.
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A big HELLO to all you wonderful ladies!
I have been following this thread for a few days now. What a great family you are to each other! So sorry for the sad news you have all endured recently.
Inmate-Such good news. Doing the happy dance for you!
I have just reached my three year milestone, and have my tests tomorrow. I haven't been this scared since my diagnosis. Can't shake the feeling something isn't right. I did call a new treatment center this week and have an appt the end of the month to continue my follow-up with them. I have been going to my onc, but she brushes everything off. I have a pain in my side near my liver, and she won't do a test because my bloodwork was fine. Do any of you TN's have routine PET or CAT scans? All I have are mammo/us and bloodwork.
So glad I found this thread. You have all helped me so much already by letting me "creep" on you all!
~Gayle
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Yea Inmate! I was just logging in to see if you had posted!
Cheers
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Inmate, Praise be! I'm so glad about your news.
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Patsfan - My onc outright told me that tumor markers are pretty unreliable for us TN girls but I still don't get routine scans. If i was having a symptom I'm sure he would test whatever I asked.
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Best thing that happened to me today was to hear that Inmate has no spread (thank you, God, or whoever's up there) and that Titan is at 3 years! With the last few days, I can think of nothing sweeter than that news. We'll take it wherever we can get it!
Linda
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Inmate yea! The best news I have heard all day...smiling broadly for you.!!!!!
PAtsfan...God these appointmetns jsut have us on edge. Be good to yourself. You are 3 years out. Glad you are switching. Feeling like you are getting the best care and LISTENED TO is so important. Let us know how tomorrow goes.
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patsfan - Congrats on your 3 year milestone! I know exactly how you feel about being scared of the results of tests. I don't have regular PET or CAT scans unless I have an issue going on. To tell you the truth I am actually thankful that they don't do those types of check-ups as part of their protocol, as waiting for results would be a nightmare as well as the fact that having too many scans is not good. I think you have a genuine concern which should be looked at. Bloodwork does not tell everything. Especially with us who have had this horrible experience should not leave anything unresolved. I think you should just pick up the phone and call the Onc. office and insist on getting a scan. Don't let her brush you off and please don't get intimated by anyone, since this is your "LIFE' which you are dealing with, not anybody else's. Do not care for one minute about what she thinks is right for you, do what you feel is right for you. If your guts is telling you something is not right, get it checked please.
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Me too- Best thing today- Inmate's news and Titan's 3 years!!
Welcome Youngmommy and Patsfan! Hope I didn't forget anyone!
Today is hubby's birthday- going out for dinner tonight!!
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TifJ -Enjoy!
Titan-Celebrate!
Inmate-YES! YES! YES!
Lovelyface-I sincerely hope you get answers to your pain.
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Lovelyface,
I hope you get answers, also.
Inmate, YAY!!!!! So happy for you!
Titan, Congratulations on the three years. My oncology surgeon told me yesterday the highest risk for recurrence was up to 2 years following my surgery so 3 years is absolutely awesome!
Welcome to Youngmommy and Patsfan!
I had a good check up at oncology surgeon yesterday.
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My BS described the 2 year mark like graduating from High School. It is something to get excited about. She said the 3 year is like graduating college- it's important, but not as big a party!
Glad to hear your visit went well Christina!
Thanks Fighter! Going to Outback.
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Inmate: Soooo happy to hear it hasn't spread. What a relief.
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Inmate. so pleased to hear your news.
Titan. congrats
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inmate-that is the best news ever! so glad you got through the anxiety of waiting for the results.
My best thing yesterday was my mo getting me in at the last minute to check on an eye allergy thing I have going on. Well, he wound up doing a compete exam bless his heart! I guess I was late for my zometa infusion so he scheduled it for me for today. I got a phone call this morning saying that my bs wouldn't let me have an infusion without a port, my port was taken out at the beginning of the year because of the infection:( So the bad news is that they want me to get another port for blood draws and zometa infusions. I don't mind having a port, but I really don't want it installed while I am doing rads, as last time it wound up being a 2 hour surgery because I have smallish veins. Plus it makes me think that my mo is thinking my cancer will come back, so I am still a bit sad today. I know they are being careful about lymphedema, because I had 47 nodes out on my right side (9 years ago) and now 2 nodes out on my left side. I am having a little bit of swelling on my left side. Plus my mo scheduled another appointment for me in 4 weeks and he said we will talk about getting some scans done then. Double sad face:(
I don't want any scans! He likes lots of scans and I should be thankful for that but as we all know they are very stressful! I am getting a bit crispy from rads, I think it was number 17 today, so 11 more to go.Titan-Congrats on 3 years!
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Inmate - good news. Anxious to hear the treatment plan to kick its a$s!
Titan - woot! woot! happy dance!
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Oh, it's nice to see some newbies posting, but so sorry you have to be here, and nice to hear from those that have not posted in awhile!
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Inmate- Yeah for no spread!!!!!!!!!!!!!
Just came back from my breast US and CLEAR! 2/2 US clear in 2 weeks! I feel sooooo relieved.
Welcome Youngmommy and Patsfan. Glad you found us.
Hugs to everyone.
Isabelle xx
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Yay Babs!!!
Bak- Crap! Why can't anything ever be simple! So sorry you're having a sad face day. Sending you a big hug!
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Best things that happened today: Inmates good news, my clear US and seeing that the donations for cancer in Susan's memory are exceeding the goal of 500$.0
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Inmate - tears of joy for you friend, tears of joy! I'm sure we have all felt like we were holding our breath, right along with you. Now we can all enjoy watching you kick some fc ass, with your wonderful, strong spirit!
Youngmommy - I am so sorry, you found yourself here. I hope your wife is able to tolerate her treatment well and that this whole experience is behind you soon.
Lovelyface - I am sorry to don't have any answers and have such fear. I hope you get some relief and answers soon. Big hugs.
Patsfan - wishing you continued good health. It is hard living with the shadow of cancer filling you around, and for me, the fear can escalate near an anniversary. I only have scans, with symptoms. My doctor likes to limit my exposure to radiation. I hope you have a great check up and you can put your fears to rest. Check in and let us know how it goes, or if you need a place to put your fear before the test or waiting for results. In the mean time, deep breath.
---/
My good thing.. 200 lb husband and I managed to hold down our 5 lb Yorkie-Poo, long enough to clip off his winter coat! Now he looks very tiny
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Inmate- great news!
patsfan- as in Patriots? (Titan, you knew I had to ask...)
Update on LJ memorial- heard back from Wonderlab today (via voicemail). Sounds like we will be able to do something in LJ's memory. I'll talk to the gal in charge tomorrow and get back to you.
I donated in Susan's memory too.
I'm beat. Drove the horses on the beach today and got all filled up with fresh air and sunshine.
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OBXK-that is too funny-holding down a 5 lb. yorkie-poo! I can just visualize it!
That's great Heidi! Keep us posted. I need to go and donate in honor of Susan.
We just got a beautiful peach tree that we will plant in honor of LJ. I would like to also put a bench in our garden, a place to remember LJ, Susan and all the lovely women and men that we have lost here at BCO.
OK, I do know the difference between hear and here!
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