Calling all TNs
Comments
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I am heart-broken to hear of naan's passing. She leaves behind young children, doesn't she? So sad. I so admired her upbeat attitude. My thoughts and prayers with her family. I think I need a group hug......0 -
I'm in, Jan.0
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Navymom is right about celia's thread, but I just meant starting a new thread about Naan's passing that members could leave their condolences on. I don't feel right about starting one since I didn't know her very well.
Hugs Jan69.0 -
you could start one on the stage 4 thread..if she went there....or here....wow...kinda shocked....
ladies.....the first thing we have to come to terms with breast cancer is that it really isn't curable...we do what we can...the mental part of cancer is the hardest part to deal with..at least with me...more so as the physical aspect of it.....
coming on here..and seeing our friends die is very, very hard..but it happens...and we all need to realize it....it is just part of the mental strength we have to build inside of ourselves....I still come on here because I need to face reality...even though it hits me in the face0 -
Thanks, Titan. That is the one of the hardest struggles in all of this.0 -
my heart is very saddened hearing the news of our beloved Naan--Julie. She was a strong spirited fighter.
BIG GROUP HUG! is in order for sure
Maggie0 -
I posted on her(Julies) timeline on facebook. I too am so shocked, she was just such a fighter, that I thought she would pull through this bout of pneumonia while in the hopt. I am so sad for her beautiful daughters, she loved them tons....0 -
So sad to hear the news about Julie. My thoughts are with her girls and her family. (((( I'm joining in the group hug )))).0 -
So sad about Naan, I feel so sorry for her little girls!!! I too, thought she would pull through!! Group hug!!0 -
I offer my hug too
we all have to deal with reality in our own way, for me it has been very hard since mine has already returned.
You think in a whole new way than the first round0 -
I hear you Stupidboob...this is very hard....she was just posting on here..what a couple of days ago?0 -
Julie you were a special and incredibly brave lady, Rest In Peace.0
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I am so sorry to hear the news about naan. Condolences to her family and friends.0 -
yes Titan not long ago......she had a great attitude0 -
So sad to hear about Naan, I was just catching up and planning to give her a note of encouragement (been through the pneumonia thing during treatment). She was a great lady and she could see the humor in most things and even during her more difficult times was still offering encouragement to the rest of us.
Sending healing thoughts and prayers to all those left behind! Rest in peace dear Julie.
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thanks scouser47 thank you. I am glad that your other area was from rads. I too have a second place I am concerned with and when I had my MO check it they laid me down and I did not realize that you can not feel the area I am talking about when laying down so I see my RO next week.0 -
hi fellow TNBCers,
I am new to the tnbc forum. I am 51. First diagnosed with tnbc 16 years ago, stage 2b. This year diagnosed with a new primary, stage 1b. First time around did A/C, lumpectomy and radiation. This time taxol, carboplatin and double mastectomy. I'm two weeks out from my mastectomy and feeling pretty sad about it. While I did get a second primary, I went for a long time without a problem and this one seems very treatable. As a matter of fact it sort of feels like we went after this 6mm tumor with a bazooka. I guess that's what they do with triple negative. I just wanted to give some hope to others as to another long term survivor out here with tnbc.
I read a few pages back and I'm very sorry for the loss of your friend Julie. she sounds very special and I feel sad about it even though I didn't have the pleasure of corresponding with her. Sending my best to all of you.
Deb0 -
Hey Deb..sorry about your new primary...and you have to deal with this again..but your post was very encouraging....I am with you on killing this sucker with a bazooka...you were really young 16 years ago and you are still very young...wishing you the best with your chemo regimen...
keep in touch here ok..want to hear how you are doing0 -
Hi Deb - Yes, they've learned so much more about TNBC now, and they really do try to hit it hard because we have none of the long term drugs like Tamoxifen. I'm sorry you're going through this a second time. How is your surgery recovery going? Are you getting physical therapy? I think that really helped me get back up to speed after my bmx (though I only did TE/implants, not quite as intensive as a DIEP).0 -
Deb I am sorry to hear about your new primary but I have to tell you THANK YOU-THANK YOU-THANK YOU for posting about being 16 years out. Mine returned in less than two years but I am just trying to look for hope and you have given me some.................thanks again0 -
Hello all. I am a newbie on this forum. Just found you this evening. I found my bugger in December last year. After talking with surgeon decided on double mastectomy, no reconstruction. Didn't want to go for first surgery so didn't want to go back any time soon. Had surgery 12/26/2012. All went as expected until I was told diagnosis. Triple negative with KI67 of 90%. Very aggressive. Recouped & had port implanted. Started chemo mid February. Was to have 4 treatments of A/C every 2 weeks with neulasta the next day. Ten days after first treatment hair going. So being proactive I decided to shave it off rather than leave clumps all over. Actually felt good to take that step for me. Went for 2nd treatment & next day the neulasta. Well knock my socks off I found out chemo not for me!! Twelve day later (close to scheduled next chemo) I developed neutropenic fever. Admitted to hospital under critical care/isolation. WBC under 400, platelets in the toilet, almost no pulse. After 6 days in hospital (whole blood transfusions) with enough meds being pushed I was exhausted. No sleeping in hospitals. I found out I would 99% chance of getting the fever after all the remaining treatments, us the damage it was doing to the rest of my body. Booted hemotologist & got new one. That a whole other story. Decided no more chemo. After discussing with new hemotologist found out delay & longer periods between treatments drastically reduced the possible benefits from the chemo.
So now starting (after lots of research) the B17 route.
Anyone else have my problems with chemo. My new hemotologist said some people can't tolerate it. So now on to next chapter of life. No Dr in US can prescribe it but can monitor me. So all info or suggestions I welcome.
Thanks for reading this novel.0 -
I am in absolute shock about Naan - this is so terrifying! And yes, she was on here just a few days ago!! My heart goes out to Naan's family - many prayers going their way!!! So, so sad!!0 -
lookingforw well sorry you have a need to be here ..............:( I have never heard of anyone not being able to do it for those reason....(learn something new everyday) I wish you all the luck. B17 as in the vitamin? What is is suppose to do, is that a Mexican cancer treatment thing?0 -
b-17 The following is a list of foods rich in vitamin B17: tried to post the link, are we not allowed to post links?
http://www.janethull.com/newsletter/0606/natures_cancer_prevention_vitamin_b17 (put the php at the end of this ) it would not let me post it
php
- Watercress
-Spinach
-Bamboo sprouts
-Alfalfa sprouts
-Lentil sprouts
-Whole nuts
-Mung bean sprouts
-Ground nuts
-Garbanzo sprouts
-Apple seeds
-Apricot seeds0 -
I'm so sad to hear about Julie. My heart aches for her little girls. Rest in peace Julie.0 -
Dear Stupidboob. Thanks for the response. Yes it is a Mexican thing. No insurance covers cost. It runs about $500 a month. It is involved about 13 pills 3X a day at meals. A diet is also involved. It comes from the website World Without Cancer called B17 Metabolic Therapy. Loved my surgeon and still keep in contact with him frequently. He allows his patients to text him. He is the one after hematologist screwed up so bad that I talk to and since he could access all my records through the same hospital we discussed my options. Came to the conclusion that the chemo could kill me faster than the cancer. Needless to say decision was easy. My pet scan after cancer surgery came back clear. I get labs done every three months and have had them done twice since quit the chemo and they're good so far except for my B12, very low. B 17 is also known as Laetrile. Newsflash for anybody who wants to know, my surgeon told me to avoid all x-rays of any kind at all cost unless I find something specific. He told me they can trigger the start of a dormant cancer.
I do yoga for seniors two times a week I exercise as much as I can because I'm tall and only weigh 112 pounds. Been very hard for me to gain my weight back. Even with only two chemo treatments I wound up with tinnitus - very loud tinnitus. I have just started the B-17 so it is supposed to improve my B12, lower cholesterol, increase my appetite, so will see. I have a great primary physician who monitors all my labs all I have to do is walk in and ask and he does them.
I so wish I had found this website sooner. I still get blue days and the fear every now and then sneaks up on me but I trying to keep it at bay. The diet is the hardest part but I figure it's either that or something not working so needless to say I stick on the diet.
I'm a grandma with one grandson who's four and I need to be around to see him get older. My best closest support besides my husband is my son-in-law. My children have actually put their head in the sand. I do do meditation with my yoga I love my music especially my soothing yoga music. My surgeon thinks my problem is because I have allergies to 95% of all antibiotics. Not fun if I get sick. I normally have to have a consult with a medicine specialist. By the way you can download free if you search for the web site, world without cancer. It is in the UK.0 -
thanks lookingforw.........................wow you sure have to endure a lot...........you seem strong though0 -
Have been reading back posts & have really received an education. I am so sorry for the great ladies that this board has lost & my condolences to their families. In reading back the courage they had was remarkable. I know 2 other tnbs's that I just met a few days ago in a free yoga class for cancer survivors. I am going to tell them to check out this board, as it truly helps me not feel alone in this battle & has great info. One of my major concerns is it rearing it's ugly head somewhere else. I have learned at at 66 every ache is not recurrance. Even with only 2 treatments before having to stop chemo, I have chemo brain in recent memory recall.. Have taken to writing notes about everything...
Stupidboob, am i understanding that you are having new problems? Bear with me as brain is not as sharp as once was. I also apologize if I misunderstood.
This is my first at any discussion board and am learning the in's & out's of it. I pray for all of us cancer survivors daily.
That we maintain the battle, but know it is God's will in the end. I pray he still has a purpose for me here.
I have a question for anyone that has any imput. I heard that Coconut Oil (Organic, Non Hydrologized) raises Vit. B 12. Anyone has any experience with it? My B 12 is real low (297) & I need a major boost.
God Bless to All0 -
Are men allowed in the group hug? If so, I'm in. So sad about Naan.0 -
Absolutely ALHusband.0
