Calling all TNs
Comments
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Welcome Trish! We are so glad you are here with us. Wishing of course for another reason, but glad none the less. You must have been floored by the triple cancer...I am so glad to hear you have great support at home. Again, welcome.
Debra, as always so glad to see you, and congrats on the 5 years!
Luvie, I too had pain in an ovary area, so much so that I went and had an internal ultrasound, and the results were...it was just an ovary. My gynecologist said it was painful as I was post menopausal, it was trying to do it's job, and it wasn't working very well. I got the image of an old car sputtering along....anyway, he said maybe I was trying to ovulate, and experiencing pain. It did go away, without treatment. Hoping you get a similar answer, please update when you can.
Good to be with you all today
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Happy Birthday Meadow!
I know that there are others here that I want to respond to, - I have catching up to do!
Welcome hugs to the newbies, and hugs to the 'oldies' too! You are such a terrific group !
FEEL WELL!!
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Trishyla, you certainly have lots on your plate! I, too, have multiple diagnoses - TN IDC (4.5 cm) and TN DCIS (8x8x3.5 cm) on the right, mixed ER/PR+ DCIS and LCIS (6.3 cm) on left. Only the IDC showed on imaging, so my "prophylactic" mastectomy on the left side was a big surprise. I understand that this multiple presentation is pretty rare, but it is what it is. I did dose dense AC, then dose dense paclitaxel, and unfortunately it was quite debilitating for me.
On the plus side, I will be two years out from diagnosis the day after tomorrow, and am doing ok. I still have some residual fatigue and some mobility issues from neuropathy, mostly in my feet. It's interesting that the standard of care for TN now does neoadjuvant chemo - my surgery came first, though the IDC was removed in a wide excision biopsy, so neoadjuvant wouldn't have been an option for me anyway. (I didn't get clear margins with the excision biopsy, but they didn't find any more IDC when themastectomy was done.) Keep on keeping on - it does get better, and I did find that recovery from surgery was easier than recovery from chemo.
Inspired by Dolce, congratulations on attaining the 5 year anniversary! You were a great help to me when I was diagnosed, and I am grateful for the Metformin studies that you sent me. I'm so happy for you.
I haven't been on the boards much lately - I still have some reconstruction work to get done (exchange surgery, probably in the late spring) and haven't wanted to discourage anyone by complaining about my seemingly permanent neuropathy, but even with all that, at two years out, maybe I can be an encouraging voice to someone. I'm no longer cane dependent all the time, but my cane does live in my car so I have it available for slippery or uneven surfaces. I was on vacation in Mexico in November and surprisingly, i needed my cane there more than at home! Walking on sand is much harder than I expected. I did have noticeable chemobrain, but that is a lot better now, and I'm starting to feel more like my "old self". Not the same, of course, but more recognizable than I have been for a long, long time. It does get better
Annie, I have always been encouraged by your unique voice, and my heart is with you.
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Happy New Year to everyone. There have been a lot of posts in 2017 already! DIV, I think of you a lot. I hope you will get a lot of support heading into your surgery, giving you information about what to expect and how recovery and learning to live in a new way might go. Yesterday, at my cancer center, there was a patient who was in for a check up. She'd had a leg amputation and was doing really, really well. Of all of us in the center she looked the best, the healthiest, so her care must be going really well.
I had my first Taxol infusion yesterday (Wed 1/4/17). They gave me Dexamethazone and Benadryl as premeds and 2 others that I've forgotten but I'll check and post later. Day two, so far, is uneventful.
On Tuesday I had an ultra sound. It did not show as much progress and we'd hoped for. There is minimal shrinkage of the tumor. The better news is that the lymph nodes look good. My MO had been considering adding Carboplatin to the Taxol because of the ultrasound results but in my last round of AC I had bruising on my left arm and I had phlebitis on my right arm. She is holding off on the Carboplatin. I'm grateful for the reprieve from side effects (I gather Carboplatin SEs are closer to AC) but I'm a bit concerned about the lack of shrinkage. My MO said that it is good news that the tumor has not grown and we may see shrinkage from the Taxol. Also, she can add in the Carboplatin later. She did increase the Taxol rounds from 10 to 12.
My MO is also a researcher and she is specifically looking for ways to break TNBC into smaller categories and to find targeted treatments for TNBC, as exist for other types of BC. I imagined my disappointing results on AC going straight into the database. Maybe, years from now, that database will help guide treatment for all of us and those who follow us.
Also she is referring me to a geneticist and they may do a full genetics panel. The results of that would not guide the chemo decisions so much as the surgery decisions to follow.
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Welcome Trishyla. We hate you have to be here, but are glad to give you support. I too Avmom have permanent neuropathy due to taxol. It was just in my hands, now my feet and affecting my mobility, and I did the icing. These boards have saved my sanity.
Meadow so glad you are doing good, you are my lifeline girl.
hugs to all.
Val
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aterry thank you so much! I start radiation and chemo January 9th. Radiologist called today to touch base and to make sure to start using cream. Radiologist, oncologist and orthopedic surgeon have all been in contact with one another and feel they have the best plan and treatment in place for me. Radiologist suggested that I take a half of a pain pill before my treatment cause during simulation my arm and back started to spasm due to raising arm to hold bar. Just hoping that chemo and radiation shrinks tumor some so that they don't have to remove as much of my ribs. Praying for all the ladies going through this as well. Stay strong!
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a terry, I think any shrinkage is improvement, and since you did respond to the AC, do not be discouraged. I know many here did have Carboplatin added, Allydp did, maybe others can give you some info on that. Sounds like you have a great team, hang in there.
Again thank you all for my Happy Birthday wishes, Another, luvie, gmmiph, DiV, SLV, and all.
LMV, the dog sniff cracks me up! So cute! VISZLA I presume....!
Val thank you I love you too
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Cocker - Thinking of you everyday. Hoping things are going as well as they can. Please drop in when you feel up to it as we all care about you and your family. Just know there are so many of us in your corner.
Hugs,
Kathy
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Thank you, avmom, for your post. Your diagnosis is very similar to mine, with comparable staging and tumor grade. It's encouraging to hear that you're doing so well. I'm sorry to hear about the lingering neuropathy, for you and for Valstim. I did really well with the dose dense A/C, with minimal side effects, but am starting to get some mild neuropathy in my hands and feet with the Taxol. I just had dose #5, out of 12, and I'm hoping it doesn't get much worse.
DIV, I'm so very sorry to hear about your diagnosis. What a rough, rough treatment to have to contemplate. You seem to be facing it with such grace and courage. Much more than I think I could manage. You truly are an inspiration!
Hope all is well with all our other TN sisters, especially Crocker. I've been following her posts while lurking, and she's never far from my thoughts.
Trish
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Dear Annie,
I keep you and your sweet family in my prayers. Hoping the love and strength from your family and friends will lift you up.
Happy Birthday Meadow!
Welcome to all the newbies. You can do this.
XOXO
Paula
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congratulations Debra on your five years. That's a big one. Wishing you many more! Your a bright light to us all.
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Trishyla thank you for the support. So sorry all of us are here and fighting this. My decision on treatment is very hard but i also know i want to live so i will fight with everything i have to beat this terrible disease. I'm trying not dwell on it. I've been watching videos on youtube to see how other people do things for themselves with one arm. Videos are very encouraging. Learned alot from them and their suggestions on tools that can help you button your clothes to homemade cutting boards to cut fruits and vegetables. Thank god for the Internet! Internet is a wealth of information! Keep fighting ladies!
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Thank you Mom!
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Hi Everyone.
I haven't posted in a while. I hope everyone is doing ok.
I get my first Taxol (dense dose - biweekly) on Tuesday, January 10.
(((hugs))) Thinking of everyone.
~Marie
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happy belated birthday meadow. And Debra congrats on the big 5year mark. That's a beacon of hope for all of us.
Newbies welcome and make yourselves at home here. The women on this board are great and can help a lot.
Cocker hope you are ok. Missing you.
Happy new year all. I have a favor to ask of all of you. Monday I go for my 6 month follow up from my mamo in July that had suspicious areas in my left cancer side. I need as many people in my pocket praying for good results. I can't even think about what if there are suspicious areas again and need a biopsy. I haven't been feeling well over the holidays and am starting to spin myself down the rabbit hole of worry. Plus I see my mo & ro next wed to review mamo results and have my 4mo checkup and also see my bs next Friday about the mamo results. A lot on my plate next week.
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((ShopGal)) don't go down the rabbit hole!! Seriously though, try not to worry untill you're given something to worry about. Keep us posted.
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Thank you Shopgal
Marie, hang tough! Keep up the good fight!
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Shopgal, you and I both need prayers for next week. I'm in your pocket, praying!!
I went to the doc with lower right sided pain Tuesday as I mentioned already. She did a CBC and Comprehensive Metabolic Panel and said she was sending me for an ultrasound. Blood work and urine were all normal. Radiology place called this morning and said they wanted to schedule an abdominal US and I had to fast. I was like huh? My doc said she thought it was my ovary. So the gal said well call your doc back and confirm. Anyway to make a long story short, she ordered both, so now I'm in a panic! I'm so worried a liver met is going to show up! In the past, I've read about my fair share of people being checked for other things like kidney stones or appendix and it ends up being something bad. Please pray for me! I'll let you all know when they schedule it. I'm coming up on four years since my BC diagnosis and I'm scared it'll be bad news after this. Sorry for the negativity
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Luvmydobies and Shopgal, in your pocket. Luvmydobies you can feel however you want and vent here. That is what we are here for. Those pockets will get stuffed.
Hugs to Amw, and Cocker. Waving at everyone. We are set to get some winter weather here in NC. We are not used to it so things are flying off the shelves.
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Luv, - I am sure that most of us know how unnerved you are, - but your blood tests are good, - and I think that the liver #s would show something not right if you had liver mets! TRRRRY not to make yourself crazy! It sounds like a digestive issue to me. HANG IN THERE and dont let your imagination run away!!
Shopgal, - Sending BE WELL wishes your way, too!
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ShopGal...DON'T take one step down that rabbit hole‼️ In May they saw something suspicious on my ultra sound. I just went back a few weeks ago and all was fine. The radiologist told me that after surgery and/or radiation your breast will never look the same. But, of course, we all want to know that everything is OK. You're going to have heavy pockets next week because every one of us will be with you. ❤️
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Shopgal, Dobies, I'm in both your pockets. Just breathe, and try to keep busy with something to take your mind away from worrying about it. Read, exercise, see friends, go out, whatever you can think of to distract you.
Meadow I hope you had a very Happy Birthday.
Lots of Love everyone. X
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Shopgal and Luvmydobies,
We are praying for you. Try to minimize your worries and avoid stress. Think happy thoughts as much as possible.
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For all of us...
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Luvmydobies...I know it's so hard, but try not project ahead. Once we have breast cancer, it's so easy and natural for us to think the worse. You have my prayers for results that everything is OK. ❤️❤️
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Thank you Scotbird, I did!
Ditto what Cathy said
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Thanks so much ladies! My u/s is Thursday at 9:00. I didn't schedule it for Monday or Tuesday because the roads may still be slick and Wednesday 12:30 was the earliest appointment and I have to fast.
Valstim, I'm in NC too near Rocky Mount and Wilson out in the boonies. That was my hubby's idea to move out so far! We were near Chapel Hill, and I loved it there!It's funny how empty the shelves are at the stores because of the snow! Stay safe and warm!
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Happy New Year to everyone!
Debra, congratulations on your five years!!! That is wonderful. Thank you for all your support when I first came on this thread. You were so helpful. I couldn't be happier for you.
Hopefully, I'll be able to make a similar post in 571 days, but who's counting.
Welcome to the new people going through treatment. It can be hard and scary at the time, but it does get better with time.
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Thanks for.this Avmom! Hope!
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