Calling all TNs
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kath- good luck and prayers!! I hope it is nothing! Sending postive vibes your way!
Welcome Feb! I tried the journey alone for a while and it was very hard. These ladies (and a few men) are so kind and helpful!
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popping in just to say hello again. 4 years ago today was my first chemo! Feels like just yesterday. Today I take my mom to see the ONC to decide whether or not she should do chemo. She was dx in July and had LX but oncotype tests shows she could benefit from chemo. My head and heart could just explode.
Stay strong ladies. It is hard but you can do it! Fight the beast with all your might. One day at a time one treatment at a time
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hello to you all. I've been a member here for a while, and whilst I've been reading everyone's inspiring and informative posts, I haven't been terribly active in posting myself. I just felt the need to pipe up to let you all know that I'm sending you all lots of love. Especially to you Kath.
I know that a few of you have been interested in information regarding mastectomy's. I can't help you there as I'm going through Neo- adjuvunct chemo at the mo and I'm due for my bilateral mastectomy with immediate reconstruction with ovary and Fallopian tube removal mid November. I do remember however that someone was interested in hearing if anyone had tumour pain. I've had 4 AC treatments and 9 of 12 Taxols (6 with carboplatin) and until recently I've had pain in my breast cancer breast, along with under arm. Stabbing pains and dull ache. I figure it can only be good as I've had tumour shrinkage on every progress ultrasound. So much so that my largest tumour is now too small to be seen on ultrasound.
Thank you everyone on this board. I'm sure there are many people like me that seek and find comfort in this thread even though we don't post as much as we'd like. Stay positive everyone and be kind to yourselves! Cass x
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Welcome Feb2015! Stick with us. We will be here for you, holding your hand! XOXO!!
I'm currently in the waiting room waiting for my four month checkup. I'm a little stressed at the moment. My husband is home packing up boxes getting ready for us to move to our rent house this weekend. Grrrrrrr!!!
Kath I'm praying and thinking of you. HUGS!!!
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Hi all
I have a question .... My Breast cancer is labeled Triple Negative
My HER2 is negative My PR is negative My ER is 1.17%
My Breast Surgeon said that the ER # is so low that any Oncologist would call that a negative.
I was treated for Triple Negative
After my chemo my Oncologist said he still wanted to target the 1.17% and did put me on Arimidex, I am NOT happy about the belly gain from it.
Has anyone else had an ER # this low and was put on Arimidex ?
I am starting to question if I even need to be on it at all.
Thanks for any input !
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Kath...you will be in my thoughts and prayers. Hoping to hear later that everything is just fine.
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Kiyasmom, you have to be your own advocate. Never underestimate the power of 2nd and 3rd opinions. It will do wonders for your peace of mind. Find another Oncologist or two outside of your Onc's group and get their opinions. It's very easy to have your records sent to other doctors, OR, get a set of records yourself and bring them with you. You should trust your Onc, but you don't have to take everything he/she says as gospel.
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Kath
Prayers, love & hugs!!!!
Please keep us posted.
G
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Thank you all--- No news yet: well a bit. It is NOT TNBC recurring, which is wonderful for all of us. I think MO is tihinking uterine/ ovarian/ stomach cancer?
My liver labs completely normal, and kidney a bit up. I did ask about internal chemo: they actually place a small port and fill the abdoment with chemo. Anyway will find out Wednesday unless my ARNP calls.
So, good and bad. Before I had lumpectomy and started BC tx I had a laproscopic hysterecttomy as I had the very early stages of uterine cancer. My doc is one of the tops in the country. He and my MO decided full hysterecctomy was best way to go, as it was miniscule and contained. Not sure how it could be ovarian when I don't have them
Emotionally I am much better. I am finally able to feed Gods love, his presence and grace. Thank you all so much for your support and I will keep you posted
Kath
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Well Kath I'm so sorry to hear you have any kind of cancer. I was hoping it was a benign tumor and scar tissue or something like that. We will still be with you of course even though this isn't BC! I'll keep you at the top of my prayer list. I'm thankful you feel better emotionally. HUGS!!!!
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Kath - I am utterly devastated to read your update and can't find the right words to express how sorry I am. You will be in my daily prayers. Please, please keep us updated. We are all here for you. We will be in your pocket the entire time and support you every step. I'm glad it's not a recurrence, but hate that you have to fight again. As hard as I know it is, put those gloves on and remind cancer who's boss. Were you tested for any of the genes? xo
I hate to see so many newcomers here lately, but you've found a wonderful group. Welcome.
Thanks you so much for all the well wishes regarding my recent scan. I appreciate your support.
NYCGirl - so very sorry to hear of your friend's passing. I hate cancer. Hate it. She was blessed to have you in her life, as are you blessed to have had her friendship and now her loving memory. Sending you prayers of peace and comfort.
Caroline and others considering BMX vs LX - I've had a BMX and although I've got this pressure thing going on right now, they do feel like a part of me at this point. I'm fairly modest, so have never really worn clothes that show cleavage, or were really attached to my breasts, so losing them wasn't as traumatic for me. The loss of sensation and numbness doesn't bother me. I struggle with 2 things the most - when I get very cold (like walking through a parking lot in winter) my pec muscles tighten, which is annoying. Also, I'm short (5'0"), so I'm used to hiking myself up onto counters or wherever to reach things. I can no longer do this, as my pec muscles tighten/flex and it's uncomfortable. I just feel like I don't have the upper body strength I once did because my pec muscles go bonkers and the feeling is the oddest thing. Regardless, I'd still choose a BMX, and for me I didn't have a choice, as I'm BRCA2+.
Shari - loving the new profile pic.
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Thanks for writing back, luv, ally, al, cocker!
Great news of clear MRI aly and wish you all the best for the surrogate baby.
aggie..sorry to see you here. I got diagnosed at your age with a 5 year old at home. we have few more like you and me here who had to manage chemo and cancer with children at home. its a tough job but surely doable.
lillie..sorry to hear that you lost your bro in law on the dreaded 9/11... one of the most unfortunate days and many beautiful lives lost suddenly.
just wanted to know how many of you have got their p53 tested. i am waiting for the test results with fingers crossed. If it comes back clear its fine, if not then more worries get added in!
thanks everyone for being around...
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My wife was tested for p53 mutation and was negative for it. The doctor at Vanderbilt suspected "Li-Fraumeni Syndrome" (a genetic pre-disposition to various cancers). Thankfully that was ruled out.
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Nice to hear from you BanR! I'm sorry but I don't know what p53 is, so I guess I wasn't ever tested for it. Let us know what you find out! HUGS!
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AL I couldn't bring up your link.
LUV a P53 is a blood protein test which can predict which patients are at risk for breast cancer recurrence. Apparently it is a common test but I don't know of anyone who has had it done.
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Thanks all! I really feel your prayers and thoughts---- am completely at peace knowing God is driving this bus
I should find out tomorrow: they are having trouble staining it, so they sent over the path report from the original BC.
Supposedly ruled out ovarian, and colon so far
Will keep you all posted, and keeping all of YOU in my thoughts
Hugs
Kath
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Kath, have continued praying for you. You are so heavy on my heart though I'm grateful for the peace you are feeling. 💝
In good news, yesterday was my "hit by the bus" day and I was struggling. But I got the news before bed that my sister's CT scan and ultrasound yesterday led to the surgeon saying, "I think you've been over staged. Only 2 layers of colon vs. 5, and I don't think the lymph nodes are actually involved". I couldn't stop sobbing for the next ten minutes. Thanking God!!!!
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Thanks Cocker.
Kath, let us know what you find out tomorrow. I'll be praying and thinking of you!
Amy, so happy to hear your sister's news was better than originally thought! Thank God is right! I hope you feel better today and are getting some rest. HUGS!!
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Kiyasmom, I always told myself that if I was in your shoes I would take whatever the Onc recommended, I just want to fight the Beast with all I can, all that medicine and God can throw at it. Then I have no "what if only I had" moments. This is what works for me, hope that helps
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Kath, I am not a medical person, but like you I am confused if you do not have ovaries how you can have ovarian cancer....Can anyone give info on that? I am encouraged it is not bc mets. Keeping you in my heart
ok I re read your earlier post...ruled out ovarian and colon..yes
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Kath,
I thought you about 80 times today. Hoping whatever it is, is not too much to tackle. xoxo Marcy
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Meadow when the ovaries are removed they sometimes come apart and some tissue may be left behind so you could develop serous carcinoma which looks and acts like ovarian cancer which probably originated from the ovarian cells. It's not common but it does happen.
Kath in your pocket for those tests and hoping the doctors are all completely wrong. Big ((((( hugs))))) I'm so glad you are at peace.
CarolinaAmy that darn bus keeps coming around but so glad to hear that your sisters cancer is not as bad as feared and she can get treatment quickly. (((((hugs)))) to you and your sister as well.
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Aggiemegs,
You might want to ask you oncologist whether you can have taxol weekly rather than every other week. I have had neuropathy in my feet for about 3 years now affecting my balance. Recent studies have shown that weekly taxol is just as effective as dose dense taxol every 2 weeks. I can't find the reference to the studies but I am pretty sure they are in the Breaking News section of this site that is written by the moderators. If I had it to do over again, I would ask for weekly taxol. Balance is super important as you probably know. I did not get the neuropathy until a few weeks after my last dose of taxol.
Hugs,
Peggy
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Well, my geneticist called me yesterday during my infusion (Round 4 of 12 of the Taxol/Carbo combo) to let me know that the extensive genetic testing came back negative, as she'd assumed it would. No BRCA (which I'd already been tested for several times, including the BART large rearrangement) and no Li-Fraumeni (which I was *convinced* was the culprit, based on my extended family's history of a variety of cancers, including breast and bone). I'm actually more freaked out, now, instead of being relieved.
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Adarkadaptedi, I find myself in the same boat with you as far as the genetics go. My family seems riddled with cancers (mostly lung but a few others as well) so it seemed likely that there would be some mutation but none were found. I am curious as to why your geneticist assumed yours would be negative? Mine seemed to be leaning the other way...
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Notdoneyet: Hey, there! My geneticist said that there weren't enough folks with the "correct" cancers for a likelihood of Li-Fraumeni; the women in my extended family who'd been diagnosed with BC probably would've had cancer much earlier in life if it were a Li-Fraumeni case, apparently. She also felt/feels that my family's was/is/might be a classic case of a BRCA mutation. It still *may* be, but because my mom and I are/were, as far as I know, the only ones who had any genetic testing done (I have no way of knowing, unfortunately; I don't have any contact with the extended, far-flung family at all. Mom was the family "glue," sadly, and all of that passed on with her...) there's no clear picture of the family, overall. Very frustrating.
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Hello PeggySull
I was interested in your post and I remembered your name from past postings.
I was interested in what you said about Taxol and neuropathy. I am over ten years out from diagnosis but also have neuropathy in the feet. I had three months of Taxotere every three weeks and the oncologist told me it was definitely the Taxotere that caused it, so it looks as though both drugs belonging to the taxane group can cause this problem with the feet (and I am also told with the hands).
I first noticed it after the chemotherapy but did not take much notice. Sometime ago I saw my GP who told me it was peripheral neuropathy and nothing could be done about it. I saw a podiatrist who had me close my eyes then prodded my feet with needles. I felt nothing! She also diagnosed peripheral neuropathy and said there was no cure. I then saw the oncologist and she said the same.
I picked up on what you said about your balance now being affected and I think that has been happening to me these past two weeks. I have been having a feeling of giddiness and of leaning forward when I am standing.
I was wondering whether you are doing anything to help with the balance problem.
I think you have given very good advice to Aggiemegs about asking for weekly Taxol. A lot of the ladies on my UK thread have posted in the past to say that weekly Taxol or Taxotere were easier to deal with than the three weekly regime.
Wishing you and all the people on the TNs all the very best. You are a wonderful support thread.
Best wishes.
Sylvia xxxx
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Just wanted to add something helpful for those just starting Taxol or Taxotere, dose dense or weekly. With the total compliance of my oncologist, I iced my hands and feet throughout each treatment. (In fact, my MO is such a believer in the power of icing to prevent or lessen the chance for neuropathy, that she was about to conduct a clinical trial for that purpose shortly after my treatment ended.) I bought the Elastogel gloves and booties - actually two sets of them. Even bringing them in frozen in a cooler, they only stay cold enough for about 40 minutes - so a back-up was needed. You can look them up online. They are about $250 for a set of each. Initially Medicare (my primary) denied the claim. However, after appealing my secondary insurance (BC/BS), I was ultimately reimbursed every penny. After 12 weekly Taxol infusions, I had no signs of neuropathy in my hands or feet. I had heard horror stories from others about suffering from neuropathy to warrant the expense - I was happy to spend every penny even if insurance had not covered. Unfortunately, many suffer from neuropathy for life. You can check out chemo or taxol/taxotere threads here to get many stories of icing. You can make your own icing bags if you prefer. I can PM anyone who wants details, but one tip is to bring a small stool upon which to rest your feet while icing. I'm only 5'3", so without the stool, my feet weren't flat on the floor. Putting them on the stool with the booties on made for perfect contact.
Paula
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