Calling all TNs

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. 

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.

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!

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.

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 

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.

Annie, so glad you are doing so well! I think we are all very brave to allow ourselves to be poisoned.

Continue to be well...

LJ - I am so sorry, they have run out of options. My heart aches for you. When my girlfriend went in to hospice care, the best part was help came to her. She didn't have to expend her energy going to doctor appointments. If she needed something the nurse requested it and it was sent in right away.

Wishing you strenght...

TifJ- thank you so much for responding..I guess we just never know in life what will happen..we can only do all we can to stay healthy. I've heard that in time the fear lessens..I hope that is the case for all of us...K

Suze, LJ and MBJ: 

I feel as though I am caught in a freaking nightmare that I can't wake from when faced with all three of your situations.  I can only imagine the sheer frustration, panic, sadness and fear each of you are going through.  My heart is, literally, so heavy I feel I can't stand straight; however, I want each of you to know, if prayers, love and healing thoughts have any power over this disease, with what all of us on this thread are sending each of you, I am going to keep on hoping for miracles.

Love and peace,

Linda  

Mary, LauraJane and Suze - sending you loving peaceful thoughts.  So sad to hear the crapshot landed on your squares...it just doesn't make sense....its wrong, wrong, wrong!!!  F**ing C**cer.

For the newbies...I'm 16 months from last chemo and still NED ! 

TifJ:

This is just so unbelievable it's hard to even grasp.  I just never imagined that it all could happen this way - there are just no words.......

I have trying to write this out for hours, and my darn iPad is slowing me down, deep breaths ladies, and a big group hug. I wish there was someway we could all visit, look tinto each others eyes, and see acceptance and love.



Entering Hospice is NOT the fat lady warming up. Yes, they generally don't expect your life experience to be more then 6 months. If it appears you will happily outlive that, they will move you to Palliative Care.



As everyone has said, hospice is an extremely personal choice. Family can't make it, our children, can't make it - only WE can decide. Be on the receiving end of chemo for life, I can tell you there have been days I wanted to just roll over and forget about it all. I have ALWAYS has a strong work ethic, and drive to be where I needed to be. Going into hospice means a calm shit shift to pain control, comfort, time with your your family, and helping you share in final, joy filled memories,



Hospice is a way of taking control of the situation, and make it the best. They can bring in counselors for your friends and children.