Calling all TNs
Comments
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AgathaNYC - I think the most common way is to count from date of diagnosis
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Mike, - Thank you for posting! All best wishes and hugs to you and your wife!!
Welcome Beckham! You have joined a wonderful group. This board of friends has been my comfort/ support group since I was lucky enough to find it!
As always, I send hugs and BE WELL wishes to all here!
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Hi, Charmell,
I know you're scared. I'm sorry that you find yourself here, but am glad you've found a group that understands what you're going through. My Ki-67 was 90% and my tumor 2.2 cm so larger than yours. I initially found my lump nearly two years ago and, fortunately, have no evidence of disease so far. I hope you'll be sharing a similar report two years from now. 🙂
Mike, fabulous news about your wife!
Lyn
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Mike, Hugs to you and wife. So wonderful. Jan
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Mike hugs to you and your wife. Thanks for being a source of hope. To all in treatment, newbies, lurkers there is hope. Stay close and vent as needed. As you can see from my signature I am 2.5 years from a nasty IBC/IDC dx.
I’ve had my challenges post treatment. Especially lymph edema, and radiation issues. The forums have been such a source of help.
Most don’t achieve PCR, and still are here many years later. Same with treatments. 2.5 years ago MD Anderson told me Xeloda was a stage 4 line of defense. Only extreme cases would a lesser stage get it. Now it is given after surgery. Hopefully more good things will come. MD was my second opion
This is a club no one wants to join, but once in you never leave.
Val
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AgathaNYC. Who cares? Celebrations are fun! Celebrate ALL OF THEM!
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Mike - I so appreciate your attitude!
I'm not going to pick my diagnosis. It was Sept. 11 of last year whenI got "the" call while I was at work in the (new) World Trade Center. Needless to say it was a crappy day all around. I'll celebrate all the others with pleasure.
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Where’s that “Like” button, Mike? Congrats to you and your wife.
Had PT again today for my breast lymphedema. She has been using a steel tool and a cold laser on my scars, and a physio-touch suction machine and manual lymphatic drainage her hands). It has gotten much better, but it takes a while. She also taped me with kinesio tape, 7 ways to Sunday.
Welcome, and sorry to the new members.
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Just checking in - at exactly 100 days post chemo I really started to feel like myself. Because of also having an Er+ tumor I am on Tamoxifen, but so far so good.
So now it’s just living - no appointments until June. It is strange and scary and exciting all together. I’m thankful and fearful all at once. Most of the time I’m calm and happy. But I won’t deny that I can let my mind wander and worry, which is a waste of time. Key for me is not to read anything about TN - most information is still presented in such a dismal fashion.
So I’ve planned 2 great summer vacations, Busch Gardens/Williamsburg in the RV and Glacier National Park, and we’ve started college visits with our older son, who will be a senior next year.
Life is sweet and I’m thankful.
Please give updates!!
Congrats to all who are staying healthy
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Congratulations VL22.
I am surprised by the tamoxifen considering your last dx was TN but anything that can help beat this is something we should do. I have heard the tamoxifen can play havoc but being able to continue with precautionary measures is good.
I'm still doing the chemotherapy, so a long way to go. if the response is positive the plan is mastectomy then radiation. I can't imagine being at the end of treatment just yet. Still trying to get my head around the rest of the chemo, surgery, stay positive and realistic.
I too plan to holiday as soon as possible. Very pleased to hear you are battling the negative thoughts and life is sweet. Travel safely and enjoy. It is good to get updates from the other side. Thank you.0 -
I was surprised about the Tamoxifen too. But I had three tumors - 2 of which were strongly ER+. I had micromet in an intramammary node right next to one of the ER+ tumors, so the thought was take the hormonal as a precaution. I truly hesitated, but I figured I should take it and see how I handle it.
Redeesides - any word on Xeloda?
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Hi all! So sorry I haven't posted lately. I've been posting on another thread. I've also taken time off the site. I wanted to forget about cancer for awhile. Now for the bad news. I wound up in the ER a week ago Saturday with severe pains on right side. They took x-rays and found a walnut sized mass in right lung. Saw oncologist and had ct scan. Mass undetermined. Saw pulmonologist yesterday. He believes it is breast cancer that metastasized to lung. I go for biopsy tomorrow at 10am. It just never ends for me.
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Over the last few weeks I've observed an increase in pain on the right side. Below the ribs and to the right of the belly button. I have this pain/pull feeling, sometimes sharp. It's inconsistent but present. It's heighted when I bend down (ie to tie a shoe it hurts) but doesn't hurt if I push on it sitting or standing.
I have an appt with onc on Monday but coming here to learn more about what the pain feels like if it has metastasized to the liver.
This is a very different pain then I've experienced in the past. I had a scan January last year and it said:Gallbladder, Pancreas, bladder, Liver and spleen unremarkable. Lung bases are clear. Clips are seen in abdomen. Small umbilical hernia is seen containing only fat, with no inflammation.
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DiV. Damn it 😠. Happy you went to get it checked and are proactive. Hate you need to do a biopsy and really hope it's not cancer. Ugh. Keep us posted!!
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Div, I followed your 'journey' last year. I was so impressed with your courage and strong will to beat this shitty disease and now this is happening:( Can't you ever catch a break?! I am so sorry you have to go through this again!! I am so hoping that doc. are wrong and biopsy will be benign against all odds. What a horrible card you have been dealt! You will be in my thoughts! You have an amazing spirit to fight!!
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Div, - Hoping you get B9 results!!
Jen, - Maybe it is a gas pocket??
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Div - This sucks. God, I hate cancer.
Jen - Hoping this is something else. Please let us know.
VL22 - Xeloda is a GO. Just got my pills today, but don't start for a few weeks. I'm still doing radiation until the end of this week and then I will take a few weeks off before starting Madame X. I also have a 3rd opinion with a research doctor. Hoping to get some insight as to whether an immunology trial would be worthwhile. I don't 'think' it would as I am PD1/PDL1 negative, but I have been reading some things that make me think there may be a small chance it's still worth it. So I will talk with this guy and let you know what I find out!
For everyone that is battling this every day, I pray that researchers come up with something soon. I feel like they are getting so close to some major breakthroughs. I pray that they have clarity and speed to help all of us.
Rebekah
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Div you are in my thoughts and prayers. Sending virtual support however you need it. Please keep us posted
Va
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((DiV)). I hope that doc is wrong. Please let us know as soon as you know.
Jen, what kind of surgery did you have where the abdominal clips are, and how long ago?
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Hoping the best for those of you, Div and Jen, waiting results!
Has anyone doing neo adjuvant chemotherapy 'felt' any change in the size of their tumour/s? Mine is definitely still there. I will have a restaging scan prior to starting Docetaxel on 30/04.
Very interested in the Xeloda and any info on the immunotherapy Rebeka, please.0 -
DIEP flap 4 yrs ago
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Div - you are in my thoughts.
Jenjenl - it could be a strained muscle. I’ve gotten that in that area. Good luck Monday.
R - so glad you’re getting started. Yes, keep us updated about the trial
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Div, I am so sorry to hear of more challenges for you. We have GOT to get at the bottom of this cancer epidemic. There is so much money being thrown at it- I know its complicated stuff- but, come on......
Jenjeni- I had pain in that similar area after treatment was over. It eventually went away when I stopped thinking about it. I think we can guard ourselves and make ourselves sore in areas that we focus on......there are many layers of muscle in our abdomens and easy to strain/pull than we sometimes think. Have you done any different kinds of exercise/other?
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helenlouise - I had adjuvant chemo, but from reading on these boards people do feel the tumor get smaller, but some say it may feel softer. Also, others don’t think it has changed but when they get surgery it is dead. It must be hard not to worry. Just remember that so many TN women do not have pcr, but never have a recurrence.
Hope you are doing well physically with the chemo.
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DiV - I hope your biopsy today wasn't too uncomfortable but more importantly that the pathology comes back benign. I'll be praying for you.
HelenLouise - My MO told me that even if you could feel something in the area of your lump during chemo, it could be scar tissue from the cancer cells that have died. You won't know for sure until after your surgery. Hope you are doing well with the chemo.
Hope everyone is having a good week!
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Thank you all for the well wishes. To all awaiting results I pray for all to have positive results. Biopsy wasn't bad they numbed me up good and gave me some fentanyl. The worst part was having to lay on my amputated side which hurts cause all I have is my clavicle. I will probably have results Monday. Urg I hate the wait.
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DiV - can you please share what you axillary node dissection was like. I'm have that with my mastectomy on 4/27 due to node involvement at diagnosis. Thank you.
Paula
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Hi everyone! Congrats on all of the milestones! Good luck to all of you waiting on results. I am saying prayers for good results.
I have a question about side effects...I finished chemo in December. I feel pretty good but have major chemo brain. I forget things all of the time. I'm groggy and always second guessing myself. Anyone else get a lot of chemo brain? How long does this last? Will I ever feel sharp again? Also I'm so so tired all of the time and a bit irritable. I know its only been about 4 months since my treatment ended but anyone deal with this?
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Thank you VL22, I'm a week post infusion 3 of FEC and this last week has been pretty crappy but all up I must say the side effects have been less than I anticipated. Oncologist tells me the Docetaxel can be somewhat more debilitating. Fingers crossed it doesn't kick too hard.
Wishing everyone well.0 -
Paula Hi, they only bodes I had removed was during mastectomy and that was sentinel nodes which they took 6. I have this weird feeling when I drink cold products. I can feel cold water etc travel through that side where nodes were removed. I don't know how many nodes you are having removed. There are women ok n hete who could probably guide you better than as as I've only had sentinel mode removal. Praying everything goes well for you.
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