Calling all TNs
Comments
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Arlene, - Wow! Great to see you on that bike!!
Thinking of Val, and everyone else dealing with surgery and treatments, - sending BE WELL and feel GOOD wishes!
Meadow and Millwmama, - I will find the name and let you know of a delicious whole wheat pasta that I use! (Even my husband doesnt mind it!
Jen, Good luck in your new home!
YAYY for all those celebrating milestones!!
I have a question for FL folks, - I am looking for oncologist recommendations on the west coast of FL. (Not me, and not BC, but need good onc asap. Live in Naples, but will travel.) Not even sure of where primary is, - perhaps lung, but appears to be elsewhere too. Hear Tampa has good hosp/drs? THANK YOU for your suggestions!
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Val! I hope everything went well today and that you will have a very smooth recovery!
I have my surgery (bilateral mastectomy) a week from tomorrow. To say that I'm terrified is an understatement, but I'm definitely ready to be on the other side of things.
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Ally, Cocker and SA..thanks for the words of encouragement. well, look like chemo is the culprit and ovaries are not producing sufficient hormones to regulate cycles. Something whose cause is hormonal has to be treated with hormones which is not allowed by my onco in my case. Well..i need to observe for longer and if my periods go on for days and days then hysterectomy is the only solution ( i dont want this at all !!) since extended cycles is not good...could lead to uterine wall cancer eventually. So this is what the issue is. He took a uterine biopsy too just to rule out the worst...results expected in another week.
Chemo surely does permanent irreversible damage. My hair is one example..half of the hair folllicles never revived. And now this ovary/hormone issue. I wonder what else will come up in the future. As long as it is not another cancer, i think so i can manage the rest somehow!!
jen..all the best for your new move
cathy... how did your mri go
simple... 3 years approaching fast! Yippeee... I remember to have joined The TNBC Club a month after you...met you in this thread!
Anybody having any news about Fighter. She had a mets and was in the immunotherapy clinical trial and responding well.. We even had Catwhisp, who unfortunately got mets ...I wonder how they are.
love and hugs to all....
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BanR...thanks for asking about me. Will be scheduling the MRI next week. I just hate hearing about complications that you and others are experiencing. Please keep us in the loop.
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Hi Kelly,
I had my BMX on April 26 so am about a month out from it. I found the pre-surgery wait the worst, and actual operation wasn't as bad as I assumed. I did find it helpful to 'picture' certain things, like walking into OR, imaging waking up from the surgery, etc. Just follow the instructions from the surgeon, do the exercises and keep on reminding yourself that the cancer will be out of your body when you wake up - that was a key piece for me. Knowing the cancer is now gone, hurray!!
Val, here's hoping and praying that everything went well.
Have a great day everyone.
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figher finished i think and is doing good. Im worried about CarolinaAmy, ive been pestering her and not a peep since her surgery.
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Hi ladies! Has been a long time since I posted.
My cancer is back! I have spots on both lungs and one spot on my sternum!
So far I have done 10 treatments. Hoping and praying chemo works! I am doing abraxane. I do treatments every Thursday for 3 weeks then I get a week off. So tomorrow is #11!
I am going to Cancer Treatment Center of America in Atlanta at the end of June for a second opinion and possibly change of drs. Has anyone else used them and what is your opinion?
Love and hugs to my TN sisters!
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Oh ks, sorry to hear your news. WELL POOP. I am not familiar with the center in Atlanta, perhaps some one else who is will respond soon. How did you discover the spots, any symptoms, or scans? Thank you for updating us, and I hate that you are going through this. Sending hugs to you.
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Man KS I'm sorry to hear this. Stupid stupid cancer!!!!!! My heart is heavy reading this tonight and I'm sending you lots of love & prayers as you kick this thing to the curb!!!
We love you.
Hugs
G
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Ks
I am sorry to hear you have to deal with stupid cancer again. I am sending hugs and prayers that chemo will get you NED, again. You should have been in the clear! It just sucks.
Warm thoughts and strength,
Arlene
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ks....so sorry to hear your news. I hope that the chemo works for you. I've heard really good things about Cancer Treatment Centers. Not familiar with the one in Atlanta, but I would think they are all excellent. Please keep us up to date with your progress. Sending you lots of ❤️
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KS so sorry to hear this news. Had you been feeling unwell. I hope this next lot of chemo will hit the cancer to the kerb. Cancer sux. In your pocket always. xx
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Had my Dr appt today. Sadly no chemo again, second week in a row. Did ask about all the articles I'm reading on treatment for TNs. Said he is part of a study on Carbo being given in weekly smaller doses to avoid issues like mine. Thumbs up on that. My body having a very time handling it.
Also talked about the Metformin use. Unfortunately it's still only in the study phase, but at least it may soon be an option. Good news for my daughters should they test positive for the gene. More options, bring them on.
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sorry to hear this ks!! its pretty shocking since you were in your early stages with no spread to nodes and this coming back after 5 years!! i feel terrible.. you will be in my prayers.
jenjen...thanks for letting me know about Fighter and happy to hear that she is doing good.
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KS-my parents both used this man in the Atlanta (Marietta) area. Not Cancer Center but a specialist nontheless. Just an option. They loved this doctor. My mother was IBC, my dad Non Hodgkins Lymphoma.
https://www.gacancer.com/our-team/physicians/2-rod...
Good luck and hoping for quick and efficient healing.
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thank you all for your kind words. I was having a pain and tenderness in my chest. Went to my surgeon told me it was arthritis. Then a few months later it started again and I also was extremely fatigued. So I went to my primary dr who wanted an X-ray. A spot showed on my lungs so then ordered a ct scan that led to bone scan that led to lung biopsy. Boom! Stage 4 TNBC !
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Thats sad KS! How did your body take the chemo the first time? and now to have to go through chemo once again must be painful. If i remember correctly, Fighter participated in immunotherapy trials. Maybe you can get in touch with her or ask your doctor if you can take part in one of these trials too.
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ks .. sending you lots of good vibes and hugs.. hoping that the chemotherapy will do its job and clear you out.. all my prayers to you... stay positive!
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Ks Idon't know you but huge hugs to you. That just sucks. I gotta agree with the others...stupid,stupid sucky cancer.
Jenjen I also am worried about CarolinaAmy she was in my sept 15 chemo group and I also have not heard from her I'll try sending her a pm
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hello all
Surgery went well. I'm resting, and the BS said he got all that he needed to get and chemo appears to have done it's job Path report will tell all, but it went as expected.
Thanks so much for the well wishes
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Glad you're doing well, Val.
I was able to get into my dermatologist yesterday, thank goodness. She thinks all of the anti-neuropathy supplements I've been taking are causing an allergic reaction. She even wants me to stop the neupogen! I didn't get infused this week, so no neupogen, at least until next weekend. I'm taking 20mg prednisone and 4 Claritan a day. The hives are better, but definitely not gone.
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I'm still looking for my unicorn😊
My tumor did not respond to neoadjuvant chemo. Didn't shrink one bit. Have been looking tirelessly for a long term (someone who has made it past the 3 year mark) survivor that was also chemo resistant. Please tell me such a person exists! I need to be connected with one. It would help me immensely.
Thank you
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Ag23
Have you tried reaching out to ABCD (After Breast Cancer Diagnosis)? They are great about trying to match you with someone who has similarities in treatments, outcomes etc. I am a mentor with them and have been pleased with how they strive to find you someone. You are in my continued thoughts and prayers. Don't lose hope!!!!
Hugs
G
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SA8, such good advice for Ag.
Ag, hang in there. " Do not despair, do not be discouraged, for I am with you wherever you go" Joshua 1:9
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Ag so sorry to hear that the chemo didn't do what it's supposed to do. That's so unfair. I'm sure you wIll find some good news from similar cases. Stay strong, and let us know what you find out, we are all sendings positive thoughts and nod love your way. X
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So sorry Ag23, are you having radiation? Though each case is different, my expectations due to the aggressiveness of my tumors was that chemo would hopefully stop the growth, and stop any new tumors, a pcr was never mentioned, but surgery would then get what could be seen and radiation would do a mop up.
Additonally, women that don't have chemo first don't know i they have a pcr. Yet they make it.
I'm sure others will chime in with their results, that is what makes this site so great.
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Ag23...I had a 2.5cm tumor. The core biopsy showed I was TN. However, my breast surgeon never gave me that information or referred me to an oncologist. She went ahead with the surgery. It was then that I was given the TN diagnosis. AND STILL she never referred me to an oncologist. I had to do the TN research on my own and then find an oncologist. So, I'm one of those women who never had a chance to do chemo before surgery. I have no idea if I would have achieved a pcr. I'm just going ahead with the next step and hoping that all will befine. My MO tells me about patients who are 20, 15, 10 years out from diagnosis who he sees once a year just to say hi and wish them well. That sounds pretty encouraging to me. It's hard and scary, but we have to keep looking ahead with hope.
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KS, I'm so sorry to hear about your mets. Dr. Lisa Carey (I believe that's how her name is spelled) at the University of North Carolina is considered a Triple Negative guru. Also, Dr. Ingrid Mayer (my doctor) at Vanderbilt in Nashville is a TNBC expert. If I ever need a second opinion, my plan is to go to Dr. Mayer first and Dr. Carey for the second opinion. Vanderbilt was very fast in responding when I contacted them when I first found out I had cancer. I hope your treatments go well.
Cathytoo, I'm so glad you did your own research and figured out you needed to see an MO. You did the right thing.
Val, congratulations on completing your surgery.
BanR, I remember meeting you here on this thread when we first joined. I always like seeing your posts.
I decided to grow out the pixie cut I've had for the past two years since chemo into a ponytail. As I grow it out, I'm noticing that I have significantly less hair than I did prior to chemo. It's going to be a skinny ponytail! I didn't realize that when I was keeping it short. The good news is that it feels like it's growing pretty fast compared to how slow it grew out the first few months after chemo. My profile pic here is about eight months post chemo....including chemo curls. Now, it's back to straight, albeit thinning, hair. I don't care. I'm just happy to have it!
Wishing everyone a wonderful day.
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AG23,
I had surgery first, so not knowing if chemo would be effective on my cancer, I started chemo for insurance. After 2nd A/C infusion I developed an allergic reaction to chemo. After discussion with MO & BS I stopped chemo. I have allergies to 99.9% of drugs. I mostly do natural cures & try to avoid flu season. In the morning I go for my 3 1/2 year check up with monitoring MO. I am basically on my own if it comes back, because chemo is not an option anymore. I have no major symptoms to think that it is back and I'm trying to live the healthiest life I can. Positive outlook can go along way. If I would have continued chemo there was and 99% chance I would have been a "Death by Chemo" statistic. I am happy with my decision and doing the best I can every day. Not thrilled with arthritis but that I can take. Hope this puts your mind at ease. My double Mastectomy was to me is very successful and my end of March 2016 PET scan showed NED.
Take care keep positive.
Marsha
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