2012 sisters

My appt with the MO sucked. She said that Adriamyrin and Cytoxan would be her recommended course of treatment. This would decrease my rate of reoccurrence by 7%!!!



I of course, just 3 short months ago, thought that my friend was "an idiot" to not throw all she could at this damn disease; to skip iv chemo and go oral + the holistic route (now on a diet of twigs, nuts, and berries).



And here I am....I still just don't buy the holistic stuff, but am willing to go to her Dr once to learn a little. He is a MD. And I think if she respects him, and I respect her.....



My gut tells me I can get through chemo; hair loss; new job starting in 3 weeks and all. I've managed to beat drug addiction one day at a time for almost 6 years, I can do this!.....

I'm idc 1.2 all nodes clean they took 5, clear margins after right UMX. GRADE II STAGE I. my number is 22. I it HAS TO BE OFFERED to me to ma,e. Decision since I am intermediate.

Tazzy and all others with this direct experience....



Please tell me the experience of Adriamyrin and Cytoxan chemo, (including SEs). I really could use some experience, strength and hope please to make this decision please.

Welcome Irishgirls - sounds like you have a vey positive attitude. There are wonderful people here to help you through.



Juneaubug - hard decision to make, I will be thinking about you. I meet with the MO next week to discuss my chemo.



Jpmomof3 - that was a wonderful story you posted, I see so many inspirational people here making coffee, I want to join the coffee group



Tazzy - hugs, you will know your date soon and you are prepared well



To all starting treatment and having surgery soon, you are in my thoughts and prayers



Wishing all a good day

Is it just me or doesn't it seem like all this  bc crap would be so much easier if it wasn't in the heat of the summer. I was puttering around outside and my own sweat bothered the couple of skin issues I have still going on.  Heck I'm such a lady I didn't even know that I sweat around my chest (pfffft). Anyway it would also be so much easier to cover strange foobs that are "under construction" or drains for those who are sporting them with sweaters, wouldn't it?  Summer is usually my favorite time of year but it's just not cutting it for me this year; can't wait for fall.  (Don't get me wrong though! I'd rather be going thru it than not be here at all. Lol) Ok so that was my big rant. I guess if that's it, I'm pretty dang blessed.

Hope all is well-weekend is coming!

Juneau, I'm a bit confused. I was IDC, intermediate plus DCIS, same breast, different area so I had a mastectomy. It appears that between biopsy and surg, they got it all so BS said I would not be offered chemo 99% sure when I go for my first MO appt. next week on the 23rd. However, I will def. be offered tamonifin. I had one sentinel node which was clear. So it seems we had similar cancer. As for holistics, I believe in it TO A DEGREE. I quit smoking with acupuncture (although to be honest, I think I just quit because I was determined and the acupuncture was just a psychological aid).... I believe in holistics but not in place of medicine so make your decision wisely which I'm sure you will do. Talk to the doc and see if that chemo is truly needed. 

I wanna be a coffee bean !! Having 2 drains in for 6 weeks today is making things difficult. I have always been a glass half empty type... This way is the news is bad you kind of expected it and if it's good it's a pleasant surprise.... I have a friend who was diagnosed Stage 4 from the get go 12 years ago. Her positivitiy and spirituality have kept her around to see the birth of 4 grandkids. Now it has spread to her lungs and bones but you still see her outside with the kids living her life. She is definitely coffee and I am sure it has served her well these 12 years. I am trying really hard to learn from her and you guys to keep up the positive attitude.

Now I have a question. My drains are starting to fail me. One is coming out tomorrow so it doesn't matter but the other one is still pumping about 50-60 cc's a day but for 4 days now it's not suctioning..... I hear a gurgle and the ball fills with air. I squeeze it and it suctions for a few minutes or a few seconds and stops suctioning again. I have an appt. tomorrow but is this serious? This happened once before and she changed the bulb. It worked well for a couple days but now it's worse then ever. I put in a call but haven't gotten a call back yet.  Has anyone had a similar problem. I'd be so happy if they just took them both out but I know suctioning close to 60 a day, they can't ....

Juneau, ditto for me. My score was 25 but a chart on the second page of the report called "Absolute benefit of chemotherapy (CMF/MF)at 10 years by recurrance score group" showed a negative benefit for me. Because of being ER + and node negative.

How come I was so lucky to lose so many nodes? Surgeon said all my extras were in my "breast tail" ie the fat that went over to my side. I am not that fat, about 20 pounds, yet here I am. Am I constructed funny with rogue nodes?

Hello Ladies,

Lots to catch up with everyone! Thank you for everyone who post surgery tips and experiences. I am waiting for a date for surgery and it seems to be taking forever for them to get back to me. I guess the surgeon and PS must have went on vacation together. In a way, I am almost putting it off taking more action to follow up on this. I know I need to get over the fear and will be much better off when I get through this journey and everyone's updates on their surgery as really helped keep me strong.

I agree about the summer comments I am not looking forwarded to that part of surgery in August (est). I guess I should be glad that, since I live 50 miles from where I receive my treatments that I don't have to deal with driving in wintery conditions.

jpmomof3 - I loved that story!  

I am off work on Friday so hopefully it is as cool as it today and I can enjoy being outside!

Take Care/Hugs!

bevg49. Your oncotype will be a part of the equation. Based I

On that as well as grade , size, age.

Mcook, the scores are from a test called Oncotype Dx. I believe they use it for node negative, ER+ or something like that. Not everyone gets it. It's used to try to see if the patient would benefit from chemo.

jpmom - super story, thanks for sharing.

mccook - I also have no scores, don't know my hormones, etc... assuming i'll get some of that tomorrow in my post-op appointment but really have no idea.

bevg49 - I'm sorry to hear you are having such drain problems. Fingers crossed for you. Where are you being treated? If not Memorial - maybe you can try getting in there. I am having a very positive experience there. I'm working with Dr. Sclafani - but imagine their entire team is excellent.

And i'll just say again to you chemo heros awaiting surgery - I truly believe you have accomplished the hardest part of the journey already. I am 9 days out of surgery and while I won't say it is a cake walk, it is so totally doable. And the type of surgery you are having should be taken into account when you feel anxious. I think the mastectomy part of mine is the easiest part of the recovery. I think the TEs just provide some weird discomfort but not pain. The lymph node removal and/or biopsy are likely the worst of the recovery. Aside from some muscle acheyness in my general upper body area, the only real discomort I feel is in my left armpit, radiating down towards my arm a bit. But I've been getting better range of motion every day with my excercises and am off the percocet (although I might take one tonight to help me sleep). Sleep has been the hardest part - as I am not a back sleeper, and my shoulder blades feel oddly sore. But overall - recovery has been really easy and doable. I'm already down on the floor playing with my boys and preparing light meals for them that don't involve pots or pans. So fear not my strong friends - you can conquer this easy peasy if you made it through chemo.

As for the emotional part of it - well, I keep myself distracted from thinking about it. And the fact that I have dressings covering where I know I no longer have nipples really helps. We'll see how I feel tomorrow when those come off and I see what I really look like. But all this is changeable in time if I decide I want to chage it. I will say that when I walked into the OR for my surgery, I was a bit of a weepy mess. I kind of just started crying uncontrollably after saying goodbye to my hubby and walking into the room. But They had me get right on the table and the anesthesiologist told me she'd give me something to dry up those tears right away. And that is the last thing I remember, until my family came in to see me in recovery. So we are the lucky ones - we get to sleep through the whole thing while our loved ones wait. 

As for waking up from surgery and how that feels - well, I won't lie to you here. It does kind of feel like a mack truck plowed into you. I gave birth to two kids without any drugs - and unless my memory is failing me of those experiences (which it could be) - getting up to pee as per the nurses orders 6 hours after surgery might have been the hardest thing I have ever done. But I thought of all of you and those who have gone before us, and maneuvered myself out of that bed, walked to the bathroom, did my business, and was rewarded with high praise and a gentle hug from the nurse. After that it all got easier. And two days later when I got home - i was going up and down the stairs in my house, and starting to move around much better with a lot less pain.

So... moral of the story is - you can do this. I hope my story helps ease your fears. Thanks for listening.

Lots of love and hugs to all of you tonight! And good luck to all those heading into surgery soon. I'll be sending you healing thoughts.

ramols, had I known what I know now, I definitely would have gone to Sloan. I live in Floral Park, near North Shore-LIJ and figured I was having a run of the mill mastectomy so I went there. I loved my bs and really loved my ps who it turns out I am eternally grateful too now because he saved my life twice. Drain problems are just part of it. It's been one problem after another. The mast. was a breeze, 8 days later I suffered a super massive hematoma in the chest cavity. Time 1 that ps came to the rescue with emergency surgery. 3 days later I had a massive bleed through the drains and underarm and surgical scar so had a 2nd emergency surgery. I love the ps. He was there every step of the way and I believe things were really bad a couple of times there so I'm glad for him but I'm sure Sloan would have been better, considering. Tomorrow is 6 weeks with the 2 drains. One is ready to come out. They called and said they are going to take the 2nd out too because there is obviously an air leak. However, it is putting out approx 60 cc. a day so I am scared to death not to mention that I beleive the skin has sort of grown around the drains so how are they gonna come out without pain????? Next week I start with a MO, getting tamoxifin, talking about chemo possibly but maybe not. You ladies are so strong because this is a slow slow recovery. BUT recovering we are !

Good Morning!

Tazzy - That makes sense about OC scores since I had lymph involvement and stage III. My score probably is off the roof so good thing I don't have that. I hope we both get our dates soon! Although I would like to think they will call and say, "wow chemo worked so well everything is gone and no more treatments" I can dream right:)

Ramols - Thank you for sharing and it helps a lot for calming me down about surgery.  

liefie - thank you as well for your word of encouragement about surgery. Chemo was actually not to horrible for me but I might have forgot the worst days when I felt crappy now that I feel some what normal again.

To all others - I have read your post and I am sending lots of love and hugs! You all are so strong!

Yesterday - I was getting my herception infusion (they forgot to take my appointment off for blood work so an unnecessary poke but I didn't complain, because it was the first time I had a hot male nurse so made it worth it.),  I sat between two women who were having their first chemo treatments.  I remembered my first day in chemo and being so nervous and afraid.  When they started to talk to me I wanted to help them to get through their first day. It is funny how things turn out because I think they helped me more than I helped them. One of the ladies has ovarian cancer, and talked about her journey and struggles. She had such a great attitude and many surgeries in the past few months. She had an reaction during her taxol infusion and never freaked out when that happened. I am not sure I wouldn't have freaked out. She laughed and said, "Why the heck not would that happen to me." It was one of the best days, oddly, I had in the infussion room having the converstations with both of the women sitting next to me and not because I was getting an half hour infusion. Like I said before, I am so comfortable with chemo and know what to expect and I feel so loved and taking care of by my nurses and others that are in there in an odd way I will miss them taking care of me in that special way and always remember it. I really look at each of these experience as a journey to learn and grow from but some days when I feel like s... I have to remind myself of this.  I am still scared of not know if my cancer has spread and that is a reality and although I try and not let my mind go there it does. The last few days my lower neck has a lump and it is painful like a backache. At first, I thought it was just my back being sore but then my bf said that it felt like a swollen lump around my spine below my neck so this is freaking me out and I know it is probably nothing but I want to go get it check out Monday. I am sure it nothing but my mind keeps going there. They took xrays of my back bf starting treatment and doc said there was something, but we would worry about it later and didn't seemed concerned so I figured from my medical notes it was skeltal but now I am wondering if I just didn't ask enough questions. So I have more questions and I am hoping it is just my mind going crazy and it is nothing! Sorry had to share today because it is really freaking me out. I am not sure why I am getting so freaked out lately I am just wondering if it is because now I am traveling into the unknown. I was so strong and positive and now the last few days I feel so sad and weak. I hate when I get in a negative mind set, so I am going to shower and get out the door, go do something fun to keep my mind occupied till Monday.

Love of love and I am really sorry to be a debbie downer with my fears today.

Bev... sorry you are having such an awful time of things - just not fair and I hope you can get some relief soon.

Firestorm - thanks for checking in the day after - take care and let us know your progress goes.

Mcook... first of all don't ever apologise for sharing your feelings - that's the idea of these boards - we can be Debbie downers and have pity parties and we all join in and at the end of it, raise our glasses to each other at how strong we are - through tears and laughter. That is so true about us chemo grads helping out the new chemo ladies just starting - I am sure you helped them out immensely. Heres hoping that the lump your bf can feel is nothing... if the docs at the beginning of treatment said nothing to worry about - we have to listen to them eh? Plus the chemo surely would've zapped anything lurking anywhere else... least that is what I told myself. Can't you contact your doc today? Having negative days is just part and parcel of having this crappy disease, great idea of doing something nice for you today. Couple of days I did the same thing... and retail therapy worked for me. Take care hon and don't go through this alone - we are holding your hand.

To all you wonderful, lovely ladies - hope you are having relatively painfree, minimal SE days with love, smiles and laughter.

DinaNM, I had 8 nodes removed. 4 were sentinel and 4 were attached to the tissure in that area....I had lots of nodes.....