Calling all TNs

Hello ladies (and gentelmen). It has taken me over an hour to catch up on posts I was so far behind (end of May).  I am doing rads right now and have been so tired every day when I get home I just don't do much -- going into work at 7 every morning working as hard as I can until 2:40 when I have to leave to go to treatments (just eat a quick sandwich at my desk) -- have to drive 40 minutes, get the treatments, then drive back home. It's still better than doing chemo though. My husband drove me today so I'm not feeling quite as tired -- think it's mostly the drive in interstate traffic. I have 15 treatments left. After that I am going to try my best to put all this behind me and just try to get on with my life.

Regarding the Taxol article -- I was thinking we had discussed this back when the article first came out (I posted the link and then felt really bad about it, but it may have been in the weekly taxol forum). Anyway, I did discuss it with my MO. He actually knows the researcher. He told me that I should just know that I had received the best treatment that they knew to give right now. He said that even after the research data, he would still treat TN the same way as he did for me. He also said that if this research does develop into a targeted therapy, he will make sure I get it.

My new avitar is a pic of me my 9 year old granddaughter took this weekend. This is about 4 months of hair growth (started coming in a few weeks after I started Taxol).  The eyebrows are mine (haven't had to draw them on the past couple of weeks), and my lashes have gotten long enough to use mascara. My last Taxol treatment was April 11. I still have some neuropathy in my finger tips and fingernail/toenail issues, but really nothing much else. My breast is starting to get red after 20 radiation treatments and I'm getting some spots all over my breast (maybe they are freckles).

Someone mentioned hot flashes. I already had hot flashes before BC and I was able to control them pretty well with an over the counter product called Remifemin (basically Black Cohosh). It didn't totally eliminate them, but it definitely made a difference (it took about a month before it started working). After chemo, though, my hot flashes have started hurting -- feels like something is biting or stinging me all over. Has anyone else experienced this? I did tell my MO and he prescribed a very low dose of an antidepressant. He said it would help the hot flashes and the pain but was not the dose he would give for depression. I took one pill and felt like I had just had chemo. I was so sick I could not go to work the next day. Needless to say I did not take another one. I guess I should call and tell him how it affected me. I think I'd rather have the hurting hot flashes.

Doglover201-I had TAC, 6 rounds 3 weeks apart and had very minimal side effects.  I am 17 months post my last chemo round and have only very miniscule neuropathy in finger tips and toes.

Lovelyface - it sounds like what you are experiencing is more like SE from chemo?

To all - I keep you all in my thoughts and prayers (for strength to endure, if not for healing )

To husband who loves wife more than life itself - how fortunate your wife is to have a man like you loving and supporting her.  I don't know for sure if my husband would use those exact strong words, but I do know that he was an amazing comfort and help to me - tucking me in to bed, preparing foods I could eat, etc.  You are a treasure beyond words.

Ladies- some positive news for a change. Myriad didn't lose the whole battle, but they did get a pretty good kick in the pants



http://abcnews.go.com/m/story?id=19392299&ref=http://community.breastcancer.org/forum/73/topic/806090

Carol - good point~  I had an excellent response to the 1 neoadjuvant Clinical Trial chemo (strong cocktail-forgot exact formula) and then BMX and negative nodes.  When I told my doctors I was done after 3 more, they're like 'no problem'.  I mentioned it to a number of other doctors over the next year, and their responses were the same.  IF we knew more about our sub-set, we would know when and HOW to go for quality and quantity of life.  Right now they are throwing everything they can at it in an effort to 'do their best', and we can't blame them for that.  But as we learn more, we can make better decisions.

I started rads 2-3 weeks after my last chemo. 

My wife is on weekly Taxol. Seems to be tolerating it REALLY well after 4 treatments. Who knows what she'll be like after more of it...she has 8 more treatments to go...but right now...4 treatments into it...besides the expected hair loss...all is going exceptionally well. Even the doctor has commented on how well she's doing. Her counts, he says, have been exceptional. One oddity, she thought she was in menopause as she hadn't had a period in a few months...but since treatment she has had a menstrual period. Even the doc says it usually works the opposite.

Jen-Jen. Doing HAPPY DANCE for you!



DogLover - I would like to second what Ruth said about the neuropathy. While, overall Taxol was mild on me, I did get awful foot neuropathy. (Luckier than Ruth, not in hands). By the end of treatment, it was like trying to walk on hot burning glass. It has improved since treatment, but both my feet are numb now. It is not overly distressing for me, because my right foot have been numb off and on for many years. Now I just have a matching pair. I'm sure it's much harder for people to adjust to when it's a brand new symptom ;-)



Julz - I want to give you an honest answer,

but I also don't want to scare you with inaccurate information. What happened to me may not pertain to you. I can't tell from your question exactly at what level your node is. (If I had to use the magic ball guess method, I would guess if it's palpable on exam...it's a Level l node)

At DX I had 0/2 nodes and no nodes seen on MRI's (I don't know how much of the lymph node chain the MRI views. Maybe somebody can answer that.). In January the found nodes "high in the axilla region" on a CAT. They were Level II nodes and were not palable on exam. (They were underneath the pectoral muscle) I just had my ALND about 2 weeks ago and I had 3/9 nodes positive. PLEASE REMEMBER, it depends on the Level, and this may not be the same for your situation!



5thSib - you look great and your almost at the finish line.



Peggy - you've stumped me. How do you find "ask an expert" on here? I did a search and got nothing. I could use an expert right now.



Joyce - Taxol in some version of a dosing schedule is one of the standard first line treatments for this disease.



ALhusband- I had TAC. Taxol was the easier of that combo. Neuropathy in the hands and feet can be a problem to watch for.

I started rads 4 weeks after chemo was done.  Took a trip in between.

I had taxol every 2 wks first for 4 tx then AC every 2 wks

Maggie

I'm new ~ found this board last night. I am Triple Negative and just finished a year or so of treatments, double mastectomy, radiation and now reconstruction this past month. I am somewhat anxious now since ALL that can be done for me is done. Well, except for the Doc visits and MRI's that will always be in my future. I am to tell her if I get a headache that lasts longer than a week and if I feel anything different in my body. I read that 3 year survival is good if you make it and even better after 5 years.



Thank you all for your input on this feed.



I believe that God holds my life in His hands, trusting Him.

Gwenie56 - Welcome to this board, I hope you will find it awesome!  Many of us find this to be our ultimate solace place where we openly talk about everything, and nobody judges us. My ex-Onco. as well as the present one have said to me that I will be cured if there is no recurrence by 2015.  I guess they believe in the 5 year mark.  But I love to hear about the 3 year mark, although it depends on when you want to start counting from, the diagnosis or treatment?

I finished chemo on December 30, 2010, and I started radiation March 1 - March 31.  So, there was a gap of 2 months in between Chemo and Rads for me.

I did taxol every two weeks (dose dense).  I did have some neuropathy, but not so bad.  It was very doable.  I think for me Taxol was very easy compared to AC.

5thSib Thanks for the Taxol study neighbor! We're from Owens Cross Roads.

Stupidboob - I don't know about K167, but will try to google and read up.  I am sending you healing thoughts and hope you feel better soon.  Like my breast surgeon explained to me, she said lots of things are always going on in our bodies all the time.  When test numbers such as tumor markers and K167 rise and fall, please don't always think that it is the devil, it could be other things going on.  I hope you had your very last chemo and a bright future is ahead of you.  Have a wonderful weekend!

Gwenie - welcome to the group, it's a place of love and support.



Stupidboob - I'll take any info on Ki67 too. I imagine it was in my path report and I didn't notice it. I did notice one thing - my HER2 is "equivocal" this time and is having further testing. My appt with my onc was the same day as my case went before the tumor board. After she gave me my recommendations, I asked what my HER2 results had come back. She got that blank look, where you know they don't have a clue what you're talking about. She looked and they haven't come in. Told me that the info might change the Tumor Boards recommendations. *head-desk, *head-desk*. A room full of experts and not a one of you noticed that in the path report???? *sigh*. I really think I may go for a third opinion before chemo. I have two differing opinions now, I think I need a third for a tie breaker! Can't do chit though, because the path report still hasn't been updated.

Kathryn did you have the onco
test, I understand one or the other is done

Kathyrnn thank you so much for the honest answer.  I am not up on the levels of nodes this node is a smidge below the crease in the arm pit. The Dr. pressed in deep to feel it.  He also showed me how to feel it.  So I have to press in & rub downward to feel it.  It's not huge....but you can feel it.  I know if it was larger sticking out there would be a lot more worry.  I remember a girl I knew in school that had Hodgkins Lymphoma & I got to see her lump before they removed it.  It was large.  But I know a few cells can still lurk & not cause this.  I am a realist & know the chances are 1 to maybe 3-4% of this happening.  So it is very low.  He is an old very wise cautious Surgeon!  He is very good, also has done research & has published papers on his research.  I trust him & he knows that my breast cancer case surprised him because it just didn't seem like my cyst would really turn out to be a cancerous tumor.  But he always lets the testing do the second guessing not himself!  Again thank you for your candor.   Julee