Calling all TNs
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Lynne- wow, what an incredible relief. You must feel SO much better now.58FC8998-5F98-67A3-58AE-338395DBB2B11.03.010
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Wonderful news Lynne!!
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cc4npg...October 7th isn't really that far away...September is flying by! Just hoping that your doctors know how aggressive TN is and will keep moving things along for you...I found my lump in Jan..had surgery on March 20, 2009..so I went 8 weeks..my tumor was 1.8 cm. It was my fault..not my doctors..I was hoping that it would go away but it didn't! I keep thinking that if I would have got on it sooner it may have been smaller but can't change things now. ah well..still would have had to had chemo/rads anyway...
And Lynne that is the most awesome news! I'm sooo happy for you! Ok..now go ahead and get that life back but be sure to check in on here now and then!
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One year out and counting... .
(Really glad to have you ladies around who understand)
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Lynne3: Wonderful news! Very happy to hear!0
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Congratulations Luah...that's a great milestone.
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cc4npg - Uni or bi-lateral is clearly a personal decision that you need to be certain about.. Do your research and ask lots of questions - surgeon, oncologist, plastic surgeon, chemo, radiation, etc. It's actually good to have a couple weeks to let this all settle in before you board the cancer/treatment train. The answer will come - do what is best for you!
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Congrats to the ladies with good news, and cc4npg, it is your choice on which surgery you're more comfortable with. Ask questions, do your research, and then go with your gut!
On an unimportant note, how do I edit my signature to add my surgery date or add my name? When I hit edit, I just get the page with questions and no space to add anything. So I added my node info, but can't seem to add anything else. Help?
Also, my incision itches like crazy, but it's still covered with steri strips, so I can't even put anti-itch lotion on it. Would orally taking a Benadryl help?
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Jw - I hope everything is okay with your lump. Hopefully it's just scar tissue. We are keeping our fingers crossed. The power port makes chemo so much easier. I got it in before chemo.
aprilh - I also went on dose dense AC/T. The AC wasn't easy, but it is DOABLE!!! I ended up being put on 12 weekly Taxol treatments because my counts dropped. I hated the taste of a lot of things on AC, including water. I found some drinks that were flavored - Gatorade G2, Sobe Lean, Sobe flavored waters, various juices and recently found some local lemonade at Trader Joe's. Good luck on chemo!!! You can do it!!
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Riley, go to your home, then click on edit my profile on the left. Go all the way down tot he bottom and there is an "edit my signature" area. That should do it.0
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Great News Lynne!!! Thrilled to hear>
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Someone asked if I'd talked to my doc about uni vs. dbl mastectomy. I actually have not done that yet, and was just talking about it today. I need to bounce this off of him as well as the plastic surgeon. I honestly don't even know that my insurance (medicaid, state funded for those without insurance) would pay for an elective mastectomy. I spoke to a lady last night who thought cancer in one breast might jump to the other if only one was taken. I've researched many things, but haven't done that yet. If anyone has any links to studies done unilateral vs. bilateral, please post. Should I meet with the oncologist before surgery? My doc hasn't even mentioned him yet.
I'm currently trying to learn more about what to and not to eat. I've started 2000 iu vit D3 now, and taking biotin (trying to work this in prior to chemo to help with nails), and omega 3, and a multivitamin. Also trying to eat lots of veggies/fruits, and cutting back on a lot of things I've read not to eat (sugars, meats, milk). Any suggestions are appreciated. I've never been a good eater..
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Thank you everyone, I am still on cloud 9 this morning, it was so nice to make "happy" phone calls to family/friends. Not accustomed to that.
Meece, thanks for giving instructions on how to display info under your signature, I always wondered how to do that as well.
Titan, While I intend to really start living again, I am not going anywhere, I have learned too much especially over the last two years that might in some small way be helpful to someone else. If for no other reason to show that you can have 4 primary cancer diagnosis involving 3 different types of cancer and still be around to talk about it!
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Just left myonc's office. The areas I had re-scanned are stable (and in doctor-speak, that's good). Must go in for follow-up in March, with my mammo in Feb, and rescan follow-ups in August. My onc was not scheduled to be there so I had about a 35-40 minute talk with NP. As the nurse was drawing blood for my labs, my onc came in, just before she had a meeting. We talked for a couple of minutes, and she did a short little exam. I feel very lucky to have them. Got lot's of questions answered and topics discussed.
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cc4npg -
You are right in that some insurances will not cover bi-lateral if not warranted or high risk. My doc recommended lumpectomy for .7 cm tumor but I pushed for bi-lateral due to risk and not wanting to walk this road again. I figured surgery and that's it...on with life!
Not so...7 years later with three reoccurances, I have never regretted that original decision. But again, it is truly a personal decision and one that you have to live with. From what I have read, if you do decide on reconstruction, it might be best to wait until after radiation - if that is part of the treatment plan. Problem is that sometimes they cannot predict treatment until after surgery.
Carolyn
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Great news Meece! Good doctors are a blessing.
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Meece: Great news!!! Good doctors are so hard to find!
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The NP said something, though, that somewhat bothered me. She said now that I am seven years out with NED, I can consider myself back in the pool for 1 in 8 women developing cancer. I thought that was an off remark. I guess I never considered myself out of the pool, but if I was, I wanted to stay out. Maybe she just meant that my chances have been higher up to this point?
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Perhaps she was making a distinction between TN and ER+ cancers? Perhaps she feels your likelihood of TN recurrence is down by statistical averages but, you still remain a 1 in 8 for ER/PR+?
Either way it still sucks and, though medically possible to still be at risk, seemed a bit insensitive from a patient's viewpoint. I would have been bothered also.
This doom and gloom, never out of the woods sh*t gets tiring.
BYW- seems this alien code after my posts may be a problem with my browser (Firefox). I didn't get it when I used Safari for the Tom Brady pics. I hope the techies figure it out; they're working on it.
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heidi - it makes you unique lol
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hi all ! i am also triple negative and you can find me over on the IDC and so scared boards. i just finished number 2 AC. just wondered if any of you got a migraine the same day as chemo. i had one the first day of first treatment and on the 1st day of second treatment. it was so bad i litterally threw up. my doc is talking to every pharmicist she can to prevent it from happening again. thanks in advance and hugs and prayers to all of you. the side effects can be awful.
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Meece, I think she may have been referring to the BC risk in the general female population i.e. you are not at additional risk anymore because of your past diagnosis - you're like someone who never had it. I long to be in that category!
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Thanks, Meece!
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Luah: I agree with you, I just think it;s a lousy way to look at it! 1 in 8 is too high for anyone!
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Well, went for treatment yesterday and my onc told me no chemo today due to the spreading neuropathy. He is gonna play it by ear week by week from here on out and see if I can have treatment next week and if so they will drop the dose significantly and possibly not do the the full 12 or put it off another week depending if it gets worse or not. I just want this to be over. One thing after another. I cant feel my feet at all at this point and my hands are getting numb. Should have been done with everything including radiation 2 weeks before christmas now who knows depending on how things go. I was so depressed i crying for two hours straight. Not sure what that means with regard to TN but my onc seems to think that it is "no big deal with the minute increace in percentage of recurrance that may happen if treatment is not completed" I guess I just dont get it either. THey push so hard for all the chemo, radiation, etc, then they say stuff like that. I am at a loss. Thanks for listening.
Jen
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Oh Jen, I can so relate to how you are feeling! These conflicting things we read and hear are so discouraging when we are trying to hard to be brave and get through all the treatment they have so carefully laid out for us. This morning I am going for a blood test to make sure my counts are right s I can take my next chemo on Wed of next week. If my counts are down, they may postpone chemo, or give me a blood transfusion or who knows what. I give myself those damn Neupogen shots every night and they hurt and I hate them and my bones ache from them and if they aren't working I just dont know how I can stand it. My love and lots of HUGS to you. My treatment plan has me fiinishing up right around the same time as you do so we are battling this side by side, don;t lose faith, we WILL WIN!
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Barbbasile - I hope all goes well with your blood tests and you can continue with your treatment. It is frustrating as hell but knowing that we all have each other somehow makes it maneagable. And yes we will win on matter where the treatment course takes any of us. We are all fighters and we can beat this:)
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O.K. Went to my fabulous onc yesterday before my 5th taxol. She did an exam claimed she could no longer feel my tumor. I explained she was in the wrong area. She said,"Oh! Where would you feel for it" I showed her and she said "Ahh! Now I feel it, it is smaller than it was, I think the Taxol is working" I told her I could feel just a slight difference and she again told me I exam myself to much. If she can't even remember where my tumor is how can she determine size change by touch? I asked her again about the original diagnosis and she said in May my tumor was around 5 cm (Do they add the numbers up or what?) and classified as grade 3 stage 3. I don't get it. The ultasound I had at SIRA has on record prior to AC Lymph size 3.5 X 2.5 X 3.2 and tumor 2.5 X 1.2 X 3.1 after AC before starting Taxol Lymph 2.6 X 1.7 X2.2 and Tumor 2.1 X 1.0 X 2.3, she also said that the last ultra sound showed I forget the word she used but explained it meant active cancer cells and she hopes the Taxol will actually kill the cancer. I pray it does too! This woman is supposedly the best Onc in my area. My so called long distance boyfriend who was here almost the whole time I was on AC at least flying here for every treatment and staying after now only comes like once a month. He has had no desire for me since I was diagnosed. I guess the cancer is a turnoff for him he doesn't even want to kiss me, it's like he thinks I'm poison because of the chemo, he even asked the onc if my mouth sores that I could possibly get were contagious. He won't talk about it. I know it sounds strange but in all of this depression I crave some loving I guess just to even feel wanted would be nice. We've been together for 4 years and would spend every other week together he'd fly here or fly me to NY to see him. I should just write him off I wish I was strong enough to go through all of this on my own. I apologize if I am talking to personal I feel like I'm just floundering. So called friends have disappeared, I guess I have given the impression that I'm fine and doing well, and thats boring for them. I'm so glad for all of you so I can be honest with my feelings. I'm trying to think positive I've been reading the book "The Secret" and I guess I brought all of this on myself. Boo Hoo! Must be all of the steroids and only 3 hours of sleep. I'm typically not a drama queen at all but I'm a sobbing mess right now. Thanks for the opportunity to be able to cry a little. I'll try and post again when I am more upbeat. I'm going outside and meditate to "The Great Sunshine Buddha" I hope everyone has a great day.
Lynn and Luah - Great news, so happy for you both
Meece - Wonderful to have such great docs.
JennC - Wow! So sorry about your neuropathy. When did you first start getting it. I hope it goes away quickly. Is it really necessary to complete the Taxol if SE's are so bad. So scary for you.
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MBJ - How awful to get the flu. I hope you are feeling better. A bowl of homemade chicken soup to you.
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I'm b a c k! Hope this post won't be to long and boring but since Sunday it has been a zoo. I was scheduled for my port on Wednesday the 15th with a Echo to follow. On Sunday morning, I found the knot in my left breast opposite the side she did the lumpectomy on. I called Monday and Dr. was in surgery all day. Said they'd talk to her if she checked in and she didn't so they called Tuesday morning when she was in the office and said I could see her that day at 12:45.
So, it was scramble and get Hubby home from work to take me. When he called his supervisor and told him what was up, his super said, "What are you doing here, get going!!!!". Dr. Mammolito said she thought it was scar tissue from cauterizing the edges of the area that she took the lump and tissue out but to be safe we were doing an Ultra Sound. Had that immediately and the Radiation Dr came in, took my hand and said..... Juanita, it's nothing. He showed me on the pictures what it was and it is scar tissue and a small seroma and the reason it dimples underneath is because that being swollen causes the underneath to kind of dimple and pull in. Whew! He was so great and held my hand and squeezed it. His name was Dr. Cross. Always rely on The Cross I say!
So, I asked if there was any way they could check with Cardio/Vascular to do the Echo that afternoon instead of after my port surgery the next day. Lo and behold they said since I was in the hospital and could come right over they would do it. We were going that day anyway and staying all night since my port placement was at 6:30 the next morning on Wednesday and we have a 2 hour drive up there. So, blessed news on the new mass as being nothing but swelling and seroma/scar tissue and we got the Echo done too and it was 100% ok for the heart too. So, we went to Applebees as I hadn't eaten since 5:30 a.m. before all this roller coaster had started. We had the best steaks I've ever tasted. My hospital has an Inn right in the hospital (an older building they have remodeled the rooms into a small hotel like facility) free to surgical patients and their families. We stayed there again. The port placement went fine but they did do it under light general anesthesia, Dr.'s preference. They left it accessed so yesterday when I had my 1st chemo all they had to do was flush it and hook me up. No stick the first time and they used my recent blood work for the day before for the surgery so didn't have to do the blood draw either. Yeah!!
So, 1st chemo yesterday, AC. First they gave me Aloxi and Decadron and then Emend last all through the Port. Then Adriamycin IV/port push, 2 big syringes of that and then 1/2 hour of cytoxan drip. During the 2 chemo drugs, I had another bag of something clear that mixes with the AC for dispersal I guess. Before I started the chemo drugs she brought me a 10 oz. cup of ice chips and told me to start chewing/swishing that around and we'd do it throughout and 25 minutes after the chemo infusion. So far, no mouth sores. Chemo nurse said it makes a world of difference to do the ice chips 5 minutes before and during treatment and after. I ate 3 cups of those ice chips! I'm also using Biotene toothpaste and mouthwash. They had me get Propel fitness/vitamin water and said it would rebuild my electrolytes. This is good because I hate Gatorade! I was also prescribed Emla cream that I will put on 1 hour before each treatment on the port area and cover it with Saran Wrap as that will numb it before they stick me as I will have to have blood work an hour before each treatment now.
Fatigue hit me within 2 hours after the treatment, like a wrecking ball. I had to go back 2 hours later and get the Neulasta shot because they are not in their office in my town the next day so I had to have the Neulasta same day. Last night I was ramped up. Fatigued but could not unwind and mid evening just a little queasy stomach but no real sickness. So far today just mild queasy but no appetite (which she said the Decadron would increase my appetite, NOT!) I had to take an Emend capsule this morning and Decadron tab 1 hour after breakfast and again one an hour after lunch. Do that again tomorrow and then I'm done with oral Emend and Decadron until next treatment on the 30th. I also got sent home with Zofran as needed and Ativan/Lorazepam for nerves to calm and relax me and had to take one at bedtime last night but it didn't help. I didn't sleep worth a hoot and was up and in my recliner because laying flat in bed caused reflux up into my throat and I had to get in a reclining position so that would stop. I'm going to ask if they maybe have me on to much Decadron. Seems counter productive to me to give me Decadron to up my appetite and my energy but then give me Lorazepam to relax/rest me???? I've not slowed down today and feel like I'm flying although I'm feeling fatigue.
So, that's all from the trenches here. 1 down, 3 to go on the AC. So far, so good. Not sick but fatigued. I get my wig and my head shaved Monday in the Look Good...Feel Better class sponsored by the ACS at my local hospital. Cancer and chemo do not get to decide when I lose my hair, I will do that myself, one thing I can control about all this.
Good luck to all you other new chemo gals and the ones already going. WE CAN DO THIS. Oh, for all us TN's, the radiologists at my hospital are also highly trained intervention radiologists and Dr. Cross told me not to fret over the TN status because he said the fact that my nodes were negative, that reset the balance in a big way on the TN status. He said if you are node negative and TN, the balance shifts a back in your favor. My Oncologist told me the same thing. WE CAN DO THIS TN's!!!
Juanita
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