Calling all TNs

georgie61

Meadow , I havent got back on the bike, maybe in the spring. The weather is lousy now anyway. Im doing much better. A 2-3" scar on my face that will hopefully fade. No more head aches or concussion aftermath. I need to get out of town to a specialst for my hand. Apparently, i've done something to a ligament or something. I kept waiting hoping it would get better, but still can hardly use it. Thank you for checking on me. I love all of you women, thank you for the support. I think of you all and my heart has been aching for those with threats of recurrence. I'm really trying to be grateful for every single day.

Cocker_Spaniel

Thank you to all of you ladies. I will take all of your prayers and comforting words with me to my appointments and/or treatment. And I will keep putting my hands in my pocket and know you are with me with every step of the way.

Nrsteph I know exactly how you feel and will always be in you pocket. You can beat this and with all the prayers the ladies are sending us, you will be ok.

Ladies my bad news is not to get any of you feeling down and thinking you may have a recurrence. I may not be able to but all of you can beat this and will be absolutely fine. Remember to find something to make you laugh every day, something to put your minds at rest and always to rejoice in your families. YOU will all beat this, don't ever let cancer win. Love you all. xxxx

Anonymous

Yay Cocker. Annie.

I am a newbie here but from the short time that i've been thru the threads, yours seem to be the most popular. I admire you for getting so much respect and friendship from people all over the world, all rooting for you, including me. You must have done something nice. It is my pleasure to know you.

Please try to carry on, people are looking up to you for inspiration. My best wishes for you Madam Annie.

See you again mam.

gmmiph

Allydp

Cocker......I haven't been on in the last week or so and I don't have words to convey all I want to say to you right now. Damn this disease. You seem sure it's a recurrence...are your doctors talking that way or are they taking a wait and see approach? I hope you don't mind me asking. I'm just in disbelief, as you're so close to 5 years. As others have said, if you were sick, it could be something residual from that. Regardless, I'm going to pray for you daily and hold out every bit of hope possible for you. I'll be checking in daily. Please keep posting and keep us updated. We're all here for you. I hat this for you. Sending you love and the tightest embrace possible from across the oceans. xo

Sister - sending you hugs from a fellow Michigander.

Simple - I'm in the exact same boat as you. To the T. Hoping it's bursitis...arthritis...or anything benign will do.

Curly - very happy your nodule is out and benign!

amw5

Hi everyone.

I'm a newly diagnosed TN. I'm glad this forum is around so we can all learn from each other. (((hugs)))

Meadow

Amw5, Welcome!

Ally, I love the new avatar picture, you cutie

Georgie, so glad you are doing better. Hope you get improvement with the hand issue.

(((Cocker)))

Cocker_Spaniel

Ally my x-ray shows a 24mm mass and hilar lymphadenopathy in the chest. It also states highly suspicious for cancer and may also be correlated to breast cancer. So it doesn't look good at all. I am absolutely petrified of the treatment which is, as I understand it, chemoradiation which is chemo and radiation given together. The difference is the radiation years ago was to the breast, this will be to the chest and throat as well as the lung and apparently you are unable to swallow even after the first treatment, you have no saliva and are unable to eat. I have gone from 64kg down to 58kg at the moment so not eating wouldn't be a good idea. Apparently the side effects are really gruesome, far worse than my last chemo which wasn't exactly a walk in the park so I am scared silly. You can ask me anything you want I truly do not mind and will answer if I can. The thing is I wanted to tell you and all the ladies on here not to get down about this. Because of all the support on here that I have received since my cancer journey started I wanted to be truthful but neither do I want any of you worrying. This is an isolated case and I feel 99.9% that none of you will get the same. If treatment is offered and I decide to undergo it, I will have to go up to the cancer lodge again and be away from my family, unable to swallow and so sick which is really bothering me. Having said that we do what we have to do (if we can). I will weigh my options up once I get the CT scan, specialist appointment and bronchoscopy out of the way. Thank you for your prayers, as I thank all the ladies on here and I feel your warm embrace around me. That will keep me going through the darkest days. Remember I will always be waiting to hear (that news!!!!) it will really make my day. Love you. xxxx

littleblueflowers

Continuing to lift you up in prayer, Cocker. Please dont worry about scaring any of us. We need to support you, just like you need our support. Xoxoxox

Cathytoo

cocker....❤️❤️❤️

amw5

My breast biopsy and axillary lymph node biopsy was on 10/13/2016.

I was diagnosed on 10/24/2016.

I had a breast mri done on 10/25/2016. I had a PET / CT scan done on 10/27/2016.

I meet with the oncologist this week, and then have a follow up with the breast specialist this week as well.

As of now, I will be doing chemotherapy first, then surgery and then radiation.

I filled out my signature area as best as I could. I will update the stage after I find out, and I will update the node information after surgery).

It's comforting knowing there are so many other ladies here to communicate with. (((hugs))) I'm still reading up on triple negative bc so I can become more knowledgeable on all of this. I've always been very proactive about my health, and I will continue being that way.

Cathytoo

anw5...I wish you the best of luck on your treatment journey. We are all here to support you, encourage you and offer answers to any questions you might have. I am one year out from my diagnosis and I have to say...it was not so bad. Just keep in the front of your mind that you are kicking that cancer to the curb...forever‼️ Based upon my own experience and research I've recently read...you might want to ask your doctor to check your vitamin D3 levels. It's important that we are in the normal range. Good luck. Stay strong. ❤️

StefLove

hugs Cocker!

So i've been missing from the boards for a few months now, trying to live and enjoy my life without thinking about this whole damn breast cancer debacle. Found an amazing man and things have been great.

So of course on Friday I go for my 9 month post rad checkup with my oncologist and my blood work comes back all wonky. My bilirubin (which has always been all over the place during chemo) is back up to 1.3 (it did get down to 1 after treatment) and my CA 27-29 is up to 39.1 (it had dropped to 15). I've been crying since they told me they need to do more tests. I'm going for an ultrasound of my liver hopefully this coming week, I wish they would just do a PET but they need to start small with insurance apparently.

Everyone please send good thoughts and prayers.

lilyrose53

Cocker, I haven't been on the boards for a long time. Just been trying to live my life not thinking about the beast as much as possible. I just graduated from 3 month visits to 6 month and that makes me a bit nervous. You are one of the first women that I met on here and you have always been so encouraging. I will be praying for you and your family. Sending lots of hugs your way!

Wishing you all the best, lilyrose

amw5

StefLove,

I am sending tons of good thoughts and prayers your way. (((hugs)))

Meadow

amw5, We are so glad you are here with us.

Steflove, good to see you, Thanks for sharing the good news about the new relationship. Keep us posted on what you find out

Lily, good to see you too

Cathytoo

Is anyone taking Metformin to help prevent a recurrence?

littleblueflowers

Cathytoo- I am!

avmom

Cathytoo,

I am also taking Metformin.

Avmom

breastcancerhusband

Hi Cathy

I'm trying to persuade my wife's GP to prescribe it. More research is needed into its use for TNBC, but certainly in the lab it helps to kill breast cancer cells and some of the trial data coming through seems to support its use.

The other interesting one is tetrathiomolybdate - this is used to treat Wilsons disease which is caused by copper acculumation. It appears that by depeleting copper you create an enviroment that the TNBC cannot grow in. There have been two small trials with it and the results are promising. The work is being led by Dr Linda T. Vahdat. Both trials appear to show the effectiveness of taking tetrathiomolybdate - the only criticism is they were single arm studies. This means all patients were given the drug rather than having a control group Vs treatment group. However, the data (in my opinion) was very good. Also, tetrathiomolybdate is tolerated well, and any side effects can be managed.

I've personally contacted Dr Vahdat about this both as a husband who will do anything to keep his wife safe and a sceintist, and I will of course pass on any relevent info.

Love and hugs to all. The biggest hug goes to Cocker today though.

Tom

x

jenjenl

yesterday was 4 yr anniversary from dx... lots of scares along the way. I have made many changes but there are areas i need to do better in.

Paintingmywaythru

First of all Annie, I want you to know that I am sending big hugs and holding you close. I too come back to these boards sometimes to see how everyone is doing and you are so close to the 5 year mark, it just makes me so angry that this is happening to you. Cocker you are so supportive and loving to us all. You open up your heart and support everyone here. I truly hope you can knock this back with treatment if the suspicions are confirmed. You have a generosity of spirit that always shines through. I wish I had more words of comfort but know I will be thinking of you and praying for you everyday. Giant hugs to you dear Annie.

Cathytoo

jenjeni...Congratulations‼️ Stay strong and keep getting better in every way. ❤️

Cathytoo

breastcancerhusband...Thanks, so much, Tom for the information. It's much appreciated. And, an extra thanks, for being so caring and supportive to all of us.

Paintingmywaythru

Cathytoo I took metformin for about a year as I had heard about possible benefits. My PCP prescribed as my oncologist wouldn't but was not opposed to my PCP prescribing. I am not sure as to whether I had any benefits from it. there just was a point I wasn't sure. I still do a Budwig diet ground flax seed and flax oil in immersion blended in a little yogurt or cottage cheese and then I add blueberries. I think there is no proof on this but I thought it couldn't hurt.

Amw5 first of all giant hugs to you. I see you are at the start of this journey. I am nearly 5 years out and this board was my lifeline during treatment. You will find everyone so supportive. Treatment is hard but not horrible. You may want to ask the social worker where you get treatment about some services that might be offered in your area. I was able to have my house cleaned 8 times from Cleaning for a Reason and Did the Avon Look Good Feel Good program. I also was able to receive reiki and massage at treatments through the hospital and they offered 4 in home massage treatments for me. I am an individual and couples therapist so I kept pushing asking to speak with a social worker and asked for any help supporting my journey. I was specific: Is there any reiki?and low and behold, there were free services not mentioned. I know this is an aside to the big C and the treatment you will start, but it is tiring and it helps to have support. Love to you and your family.

amw5

Paintingmywaythrough,

Thx so much for the very good information. (((hugs))) I do believe this board will also be my lifeline during my treatment.

KSteve

Welcome to the thread amw5! Glad you found us. I just responded to your PM.

Allydp

Cocker...Annie...I think I speak for all of us when I say we're not thinking of ourselves when we hear of your possible recurrence. We're thinking of you and want nothing more than to take it away from you. Thank you for being so open with us. My heart just breaks for you. I'm still going to hold out hope for some odd benign finding, but if you have to face this beast again, we are behind you regardless of the path you choose. My thoughts and love have been constantly with you.

Allydp

Jenjen - congrats on your 4 year milestone xo

Batesburg

I don't post much on here - mostly I read what you all post and for this, I am appreciative. Ally, you say it beautifully about all our thoughts on recurrence - and, thank you for your sharing.

We are all together on this journey and I do care and share my deepest concerns and energy for our special group of TN breast cancer survivors and thrivers.....we are all doing the best we can with all that we face- we are strong, resilient and hopeful.

Thank you for all of you,

Janet

LRM216

Annie:

I came on the boards today, realizing it's been awhile since I've been here and was devastated to read your post. Please know that I too am holding you up in prayer, and know that my thoughts and love are with you. I will surely be following your posts closely as well as keeping you close to my heart. God bless, Annie.

Hugs and strength to you,

Linda