Anyone recently diagnosed, Feb 2014 here

jessozzie

Hi Meadow,Jules and everyone here,so Meadow, like me, you had 0/15 nodes negative when removed, but initially before sutgery some were positive,the chemo you had had an affect on them so they became clear,on some people it does not get all of them to negative status, so thats why on some people you will read  3/15 or 2/10 meaning that 3 or 2 nodes remained positive after chemo...having negative nodes like we do means the cancer is just locolized,and has not gone past our breast area...i hope i have explained properly

Meadow

Yes I was, and still am so thankful for that. Thanks Jess, xoxo

jessozzie

Hi Meadow,i keep reading your Dx and stll baffled how you are IV when you had negative nodes,to be stage IV one has to have positive nodes for it to be past stage IIIB or IIIC..stage IV also means some mets...which you dont imply you have,,could you clarify for me please..

 Jess xo

Akevia

I'm sorry to butt in but  Jessozzie, meadow explain her situation a few times about her stage 4. I think on her pet scan they saw mets to her lymph nodes in her collar bone area and somewhere else I think. The chemo clear her of that right meadow?!?! 

Meadow

I have had others ask this, and I am seeing my oncologist next week, I will ask him. He told me on my first visit,"all IBCers are a 3 or 4 on diagnosis, you are a 4."  I just took that and, not knowing a lot about IBC, didn't question. I do know he knew I had a lot of lymph involvement, around my collar bone and a line from my breast to my hip.He also told me that by the nature of IBC being so aggressive, he felt It had moved beyond that if only with scattered cells, and he expected the chemo to travel through me wiping it out.  My cancer was very affected/receptive to my chemo, after every treatment my lymph had responded and my breast looked better, eventually going from a big old mess to very normal in size and appearance.  I have since read on this breastcancer.org website that in staging IBC the lymph is considered so until he can clarify for me I can only answer with that.  Perhaps the moderators could weigh in.... if I come back next week and say I am a 3, not 4, then all the better as far as I am concerned.  I know this confuses people, sorry about that. I want my info to be accurate and not confusing too. He is a brilliant man, saved my life, so I will be happy to ask him.

Meadow

Jess, every time on here that someone has questioned or been confused by my diagnosis, it makes my stomach hurt!, I feel so bad for not knowing my own answers.  I feel like I have betrayed the stage 4 heroes somehow, and would never ever do that! I think I will just delete that part of my profile. Thanks

jessozzie

Hey Meadow,dont feel upset not knowing exactly,as most if us depend on our oncologist to tell us,your pathology report will tell you if you had any IDC or IDCS and clear margins after your mastectomy...

Meadow

thanks jess, I had not thought of that.  He offered to print my report for me, then we both forgot.  I will ask for it next week.

purplemom1982

I was diagnosed October 28, 2013.  Had 4 Rounds of A/C chemo and 4 rounds of Taxol.  Just had bilateral mastectomy on March 25th.  Got the pathology reports and although my breast was looking better and we couldn't feel the lump anymore... the tumor was still 7 cm, but we got clear margins with surgery so that's good.  Also there was no longer skin involvement.  However I had 22/26 lymph nodes that were positive for cancer with the largest one 2 cm.  It also says that there was Focal extra capsular invasion present in the lymph nodes.  I don't know what that means.  It really scares me that there were so many lymph nodes positive after chemo... especially considering before treatment they said I had less then 10 lymph nodes with cancer?

Meadow

Purple mom, you have been through a lot these last several weeks haven't you. Did any of your doctors mention the possibility of you having more chemo? I certainly don't like the thought of that for you, and I am not a medical person. I am wondering if that isn't in order as your pathology did not show clear margins. What is next for you? Do you have a follow up soon?

purplemom1982

Meadow- my pathology report showed clear margins.  As far as I know I won't have more chemo.  I'm supposed to start radiation soon.  I go next Tuesday to get the CT for radiation so they can figure out my course of treatment for that. I was supposed to start radiation the following week, but my surgeon is making me wait a little longer because I developed a seroma and he wants that completely healed before starting the radiation. So hopefully I will be starting radiation the first week of May.  I go back to see the oncologist on May 6th (I think).  Like I said before the thing that scares me most is the amount of lymph nodes involved.

jessozzie

HI Purplemom, i was wondering if your report said,,,No evidence of IDC and no evidence of DCIS,,and were margins 10mm clear??,,did you ask your oncologist why the chemo did not make your nodes negative!

jess

Jules_NY

purplemom. Sorry to hear about those stubborn nodes. Maybe they will focus the radiation there. I hope you get some answers to ease your mind. The waiting game stinks!!!!!

optimi

Purplemom I am so sorry about the lymph mode involvement! I have had a similar dx as you and my oncologist prescribed me 4 A/C sessions followed by 12 weekly Taxol sessions with conc Carboplatin every 3 wks. I heard that there have been a lot of studies confirming the efficacy of carboplatin in addition to Taxol for the treatment of IBC.Apparently it increases the chance of a path compl response by 10%. It seems to be working very well for me in shrinking the tumor. Maybe you could ask your oncologist about that? I wish you the very best for your Ct scan!

I had a couple of question I hope somebody here might habe answers to.  I have had the sniffles for quite a while and every time I blow my nose there is blood in the tissue.That has been going on for a while and I always forget to ask my oncologist about it. Has anybody else experienced this? I am aware that chemo treatment leads to easier bleeding but haven't heard about the nose bleed in particular.

My other question is regarding hair growth. I have noticed that my hair has started growing back but to my dismay it seems to be growing back all gray! I used to have black hair with maybe 10% gray. When showering just now I did notice that a lot of it is falling out again. Is this not the proper hair regrowth yet? Can I hope for it falling out and regrowing black again? Anybody experienced anything similar?

Akevia

optimi, 

 Are you on taxol now? Taxol does cause nose bleeds, it did with me as well and I ask my oncologist and he said yes. I've heard a lot of women say they hair have grown back in gray and I don't think it change back I think you may have to dye it once it grows back in. I also heard women started growing their hair back on taxol and the hair does shed more when it's wet. I used the cold caps so I saved most if my hair but it does shed a lot when it's wet. 

Hope this helps!

Meadow

Optimi,I agree with Akevia, my hair came back more grey, but I have heard of others who had the first regrowth, then shedding again, including eyebrows and eyelashes. Then again regrowth that stays and this second growth is closer to your original color. Rather than get back with my bff Loreal #8, I am just going to rock the grey for awhile. Everyone seems to love it, and I am enjoying the break from coloring. Surprisingly it does not make me feel as old as I first thought it might.  I think Akevia is right too about the nosebleeds, but you might just call the nurse to put your mind at ease.

Hang in there!

optimi

Thank you Akevia and Meadow for your responses! Yes I am currently on Taxol treatment and have my next session tomorrow. Will make sure to ask about the nosebleed!

What a bummer about the hair! I have a friend who is in remission from BC. She used to have more gray hair before treatment than after. I was kind of hoping for the same She had a different type of BC and was on different meds so that might have also made the difference. But Meadow you are giving me some hope that I might still end up with black hair And I am sure you rock your gray hair.   But either way, I guess hair and its color is secondary at this point. I will focus on healing for now

Akevia

meadow good for rocking your gray and, I think gray hair is beautiful!!!! 

Akevia

and you are welcome opitmi !!

Meadow

Thank you Akevia I hope so

Akevia

you're welcome meadow! :-)

optimi

Another question for you wise ladies out there: For a few weeks now I have had soreness at the side of my tongue. It burns especially while eating and the burning doesn't seem to go away. Has anybody else had mouth/tongue soreness during chemo and knows how to get rid off it?

Jules_NY

Hi optimi,

Was just checking in before bed. I haven't started taxol yet but I got mouth sores from the AC. Thankfully they were never full blown open sores. But I do feel them developing in my throat and on the roof of my mouth. My gums and tongue also feel rough. What helps me is biotene toothpaste and mouth wash. If I slack I notice my mouth gets worse but if I brush and rinse after every meal and before bed it feels much better! 

Good luck!

Hope everyone else is doing well!! I just finished my last AC and thank goodness because this round was rough!!!! Sono on tues 4/22 then taxol 4/25 weekly x12. Hopefully it is gentle on me. Anyone working during chemo?

Meadow

Optimi, unfortunately mouth sores can be a side effect of chemo, I was lucky and did not get any. I did rinse my mouth after eating, with baking soda...I kept a little container with dry baking soda and a little salt by my kitchen sink, then it was easy to mix and swish.

Of course be sure and tell the nurses, you want to stay on top of this if you can.

I hope this helps

Meadow

Hello sweet Jules

Jules_NY

hi meadow. On the same wavelength!!! Signing in together!! Hope all is well!!!

Meadow

I thought the same thing lol. I'm good hope you are too

Meadow

jules you are having a sonogram between chemos? I like that, wish I had. 

Jules_NY

I see the breast surgeon again on 4/25. I guess she wants to compare. I already know the tumor is shrinking which is so comforting. It is actually looking normal again. It's funny how things are done a little differently everywhere. The end result is all that matters I guess!!! Gonna go get some  zzzzzz. Thankfully that is one thing that I don't  have problems with!!

optimi

Thank you so much for your tips, Jules and Meadow! I will make sure and try your methods and of course talk to the nurse next time.

P.S. Jules, I am receiving Taxol since 8 weeks and I have to say it is nothing compared to the nasty A/C, not even with the Carboplatin mixed in. So, congrats on finishing up the rough part of chemo!!