Calling all TNs
Comments
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Bak..I can talk to my onc but I just freak out.. I can just imagine his face if I ask for scream cream....maybe I should do it just to see his reaction.
On a lighter note..(I work for a grocery store chain)..and we get samples in of stuff..one was coconut butter..sooo..I'm looking at it thinking hmmmmm...but I hate the smell of coconut..
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MBJ, I am so glad you have the computer - I am so sorry you are in such pain and the FC has gone to Stage 4 - I wish there was something I could do to take it all away from you. Please reach out when you feel like you can and know we are all here for you.
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Bernie, I just had my first follow up annual mammo a couple days ago -it was ok and they let me see the film. Breast is getting less dense, too, which is helpful. Hope you have good results!
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MBJ so sorry you are dealing with all of this. Praying for you and hoping you can fight this beast! Stay strong and positive!
glad you got your computer..
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Christina..remember when we thought that having dense breast was a "good" thing? Wrong..I really can't understand why women with dense breasts ..no matter what the age isn't there something else other than a mammogram...having dense breasts and a mammogram is like looking for snow flake in a snow storm...it just doesn't work..I remember my gyn telling me that I had dense breasts when I was around 40 years of age..ok..fine...check me out with something other than a mammogram then...it still pisses me off.
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MBJ - I don't know what to say except I hope and pray you improve. I'm so glad to hear you got the computer. We missed you and need you on the thread. Take care.
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Titan, I don't understand it, either -why not do an ultrasound at least? I'm glad my daughter is being watched like a hawk with my oncology surgeon who is wonderful - of course, sadly, sometimes it doesn't matter how closely one is watched - but at least I know she is going to someone who knows her family history and cares about his patients.
Linda, Happy Birthday! Each birthday is a gift to us like never before.
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Annie..hang in there OK? Your se's may not be as bad as you think they will be..If you are having the nualasta..be sure to take the claritin and aleve...think about seeing an acupuncturist also..for the pain that the nuelasta may give you...the Neulasta pain (and alot of us didn't have this but I did)..was like having the flu..not the intestinal kind but just very achy..my bones hurt, my skin hurt to touch..this lasted for maybe 24 hours or less....the best thing was to sleep..besides that 24 hours of neulasta crap..I really was totally fine..not perfect but ok...I can't say that chemo stopped me from much of anything...I went out in crowds, ate veggies and did whatever...my onc never told me to NOT do anything...
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Christina...it's just with TN it just grows so quickly..so glad your daughter is being watched closely..how old is she? My daughter is 23 and I'm just not sure when to start pushing these mammos or ultrasounds..I will pay for them myself if I have too...
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MBJ- I just can't believe this......It makes me so sad to hear.........Big hugs to you. xx
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MBJ:
I am sickened over this latest news, but I am so puzzled, much as Titan is - why hospice??? If it's just in the bones what about radiation for the pain and to stabilize the bones? There are so many gals on the Stage IV board with bone mets that have this done, and one is even living 18 years (or more) with bone mets. I don't mean to rattle on so, but I am very emotional at hearing what you are going through and I feel so damned defenseless in helping you, but want to so very much. Please know that we admire you so, miss you dearly, and want only the best for you. I can't believe that there is nothing else to be done?????? Another opinion???? I'm sorry, I am probably upsetting you even more, and that is not my intention, I just want so much for you to get better.
Love,
Linda
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Thank you, Tif and Christina- just so rattled by MBJ's news that I forgot to thank you for the birthday wishes.
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MBJ - wishing you comfort.
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MBJ - wishing you comfort.
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Titan, my daughter is 35 - I'm 51. She has already had one hard biopsy and a couple cysts treated. I never had a hard biopsy but had the same problem with painful cysts. I can't remember when she started getting mammograms but I think the onc surgeon recommended them for her due to her fibrocystic changes.
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Hi to all
I did have a great nights sleep and you were right, no side effects yet and not one little bit of nausea or vomiting. Have eaten well today and even manahed to type for most of the day. Was wonderful. Though do have a little bit of constipation hopefully the veges will help that and to me thats a tiny problem.
I am so sorry about some of the diagnosis on here and hope things work out well for you all.
Titan how can I do your TN's Sign Up. Can you tell me as I am not sure what to do on here.
Thanks again for all your help guys and keep as well as you can. Only a small post tonight as I'm sure you got fed up with the long one.
Annie
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MBJ - Very glad to hear from you and am so sorry your having so much pain. I'm as confused as Titan as well, why no more treatment? I'm praying for you.
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MBJ: So glad to see you back here posting, but am shocked and saddened by what you're going through. I always thought as mets go, bone mets were treatable with surgery,rads, drugs... but I realize everyone's situation is different.... I'm just hoping that there are some options for you...please post again when you're up to it.
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MBJ - My dear, I am very happy to hear from you. I am devastated, just devastated by what I read. Most of your post didn't make sense to me as I read in disbelief, but going to hospice? You? No way! I cannot believe it. I can't imagine why such a drastic change so quickly. Stage IV - bone mets, but that is not a prescription for hospice? Girl, please stay with us, we LOVE you, we NEED you here on the boards with us, giving us your wisdom. God bless you as you go through this horrible period, but he will pull you out of this once more, I bet with you.
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MBJ, I was glad to see you log on, but so sorry to hear about your condition. I hope the next few days bring some positive news for you to share!
OK, TN question for you all - as I understand it, most of us are Grade 3 - very aggressive cancer. Is the notion of us being 3 years past diagnosis as a somewhat "safe" point because 3 years is the amount of time a loose aggressive cancer cell takes to grow from a single cell to a noticeable (and problem causing) tumor? I know my mammo 1.5 years previous to diagnosis showed nothing and then a 1.2 mm tumor grew in the interim. What % of TNs who recur will recur AFTER 3 years - and why?
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minxie - great question!! I can't find information on recurrance rates for us TNers. I had a lumpectomy on 12/9/11 and am in the midst of DD AC and Taxol. I'm negative for the BRCA genes, but still debating on the prophylactic mastectomy. I don't think I could go through this again. I'm ready to just cut 'em off and be done with it!0
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Ladies I am just reading this and I am floored. I don't know what to say. We are definitely in need of a team HUG right now.
Correct me if I am wrong but I always thought spread to the Bone was treatable.
Very sadden today.
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I now know the feeling of "there is nothing left we can do for you". I'm thankful the Halavan worked for the 5 weeks. I'm still in shock but I think I pretty much knew last Friday with the pain increasing day by day. I went ahead and got more yesterday even though I knew it had stopped working. I got the nueprogen today too. I knew this time was coming but I still was holding on to hope that that this Halavan would last longer. I can honestly say I've done every chemo there is I guess our time is our time. It's appropriate that it's raining today I feel like the earth is crying over this sad news about MBJ, Suze's lungs being filled with fluid and my news. I got the same talk about hospice but I thought that was for when you couldn't function. I also have heard of other women living with bone mets and I thought it wasn't close to the end unless it had hit vital organs. Please tell me if I'm wrong. MBJ there are also super strong pain meds can't they give these to you? How about some of the chemos? How advanced is it? I know that they can sometimes they can do radiation to try and help with the pain. I'm wishing you the best and as you told me from the beginning get more opinions. Suze I'm thinking about you and have you thought about the metformin? I know it's supposed to be more helpful if it's done in conjunction with chemo. Funny I just got the prescription for it yesterday but since I've now done all the chemos and repeated so many there really are not any chemos for me to choose from. I wish someone could answer my qustion "how long do i have?" Well I'm still kicking, pain meds are working so far. Wish I had better news to share. Looking forward to some sunshine. I was feeling kind of frantic/manic this morning when I woke up with the edema so far advanced and just general overall pain. But I
increased my pain meds and this ice cold beer taste pretty good washing them down. I think I'll take a nap and maybe paint tonight. I hpe you all are having a good day. So glad to have all of you in my life I'm just saddened for the circumstances that brought us all together.0 -
((((Laurajane)))) (((((Susan))))) (((((MBJ)))))
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Hi everyone- I just finished my 4th of 4 taxol treatments..I finished 4 A/C treatments prior to that so chemo is officially over. I will have my exchange surgery and then have 6 weeks of radiation later in march. I was just reading on Susan G, Komen that triple negative is the most likely to recur and when it does is most likely to have a poor prognosis. I had 1 positive node. I guess what I am looking for is some positive results..some hope from all of my sisters here that have not had a reoccurrence. I am more frightened now than I was when I was diagnosed!!! Thanks everyone
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I don't understand it eiether, Fighter. But once I asked my oncologist, if it did recur, how long the reamining lifespan would be. He said a few years. Then I asked him, but what about these women I hear about with just bone mets, who are alive for 10, 15 years? He said "'they're estrogen positive". And that was that.
I am thinking that maybe if one is TN and has bone mets it's so aggressive it never just stays in the bone?
Whatever it is, it sucks and they need to do something for TNs NOW. LauraJane, Suze, and MBJ, thinking about you all and so sad and frustrated...
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Kelley- I think most of us have come to the conclusion that cancer is a crapshoot. It follows no rhyme or reason. We've been told that TN is "front loaded" meaning it is more likely to reoccur in the first couple of years, but of course that is not a rule- it can reoccur at any time or never- we just never know. I have recently seen some posts from TNs that are anywhere from 3-7 years out and doing well. I am sure there are many more, they just no longer post as they are out living their lives. I really don't know the statistics on stage IV TN prognosis. I am sure someone else will come along with some info. I wish I could give you more reassurance. We all live in fear, but for some it lessens over time
Laurajane. Suze, MBJ- I am thinking about you all and praying that some good news will come along soon for you.
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good afternoon ladies,
it has been awhile since i've posted and it has taken me awhile (2 1/2 hours) to catch up. I could have just skimmed, but didn't want to miss any good news. well, f**k, i could have gone on forever without reading the bad news! after a fit of tears i am just numb. and now apparently a bit lacking for words. at least any words that don't start with f.......
Suze, LJ and MBJ.....we all want to be able to reach through our computers and pluck you from your pain, but alas all we can do is pray that you get some relief, both physically and mentally. i guess running away is never the best option, but if you guys have a tropical location in mind i will book the trip and pick you up on the way there. love to you all is the best i can muster at the moment.
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Annie, so glad you are doing so well! I think we are all very brave to allow ourselves to be poisoned.
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Suze, MBJ & LJ--- I guess I'm a coward. I just find all this bad news unbearable. I waver between incredulity and sadness, while setting aside my own sense of fear. Words fail me. I'm sorry.
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