Kerry1000

My understanding is that dose-dense chemo (every two weeks) has a better survival ratio than every 3 weeks (I forget how much the difference is - think is depends on staging - not an enormous difference but to me every percentage point counted).  You do need a shot of Neulasta or Neuprogen afterwards as otherwise blood counts will go too low; also the risk of heart failure from AC is greater.  But if you're otherwise healthy many feel the risk is worth it (in my case I wanted dose-dense, onc. wanted standard, I prevailed).   You do have less time to recover from side effects, on the other hand the whole thing is over more quickly.

My prayers and love are flowing to you...

Kerry 

I like the suggestions here; I used some similar strategies when discussing treatment with my daughters who were 5 and 8 at the time.  Something that I was also helpful was that I told them in advance approximately when I would begin to feel better (in my case, at the start of the next school year) and also, through each phase of treatment, when I would start to feel better from that particular phase.  I also kept reminding them "this isn't forever" - it's like a mantra in our home when things go wrong.  I think it's comforting for me as well as them to concentrate on the fact that even when things aren't great, there will be some better times ahead.

Re the hair issue, I told them that they would be able to cut my hair (which they've always wanted to do) and also draw on my head when my hair was gone.  They were very excited about both of these.  Hey, how many kids get to draw on their parent's head?   We used face paint and I covered it with a hat when I went out, but otherwise let them enjoy seeing their designs.  They thought it was hysterical and I think it gave them a sense of control about the whole thing.

You sound like very loving and concerned parents.  This is obviously a very trying time but I'm sure you'll get through this o.k.  Best of luck to you both and I'll be thinking of you. 

Hi yuyu,

I am glad that you have another doctor's appointment at a good place.  And I'm glad that you're here, because this board is a great source of information and support.  You're absolutely doing the right thing in following up and being proactive, you sound very intelligent, resourceful and well-informed.  I wanted to let you know also that M.D. Anderson in Houston (I believe) has a center dedicated to IBC; you might consider calling or looking at their site for info. or even to have a consult there.  I know that doing things like that can cost money but this is about your life; in my opinion this is a good reason to use those credit cards if you need to!  Please keep us posted.  I'll be thinking of you and praying for a good (non-IBC) outcome.

Kerry 

I eventually had the tissue removed in both breasts (I like the sound of that better than the word "mastectomy"), but I did so in two seperate surgeries 18 months apart.  I was just not able to make such a major decision so soon after the shock of diagnosis and felt that I shouldn't have to, so I just went with what I had to do (a single mastectomy) and decided to wait to decide about the other breast until my emotions were more under control.

While going through chemo I decided that there was no way I ever wanted to do that again and so decided to have the tissue removed from the other breast as well.  (I also did reconstruction with implants).  For me, waiting to decide was absolutely the correct way to go.  I had plenty of time to think about it - over a year - and felt entirely comfortable with my choice.  I also knew what the surgery and long-term aftermath would be like, so I was much less nervous before the second surgery than before the first.

Even though I had to have two seperate surgeries, a uni-mast. is that much less physically traumatizing than a bi, so I don't think my recovery time was significantly increased.  (I did recover very quickly from both surgeries).  

Best of luck in your decision.

Kerry 

Thanks, everyone.  Your suggestions are great and I am going to investigate thyroid further - I'm sure it was checked but my understanding is that current recommended levels may not fit everyone's needs (my youngest child has low thyroid function and takes synthetic thyroid).  Marin, I've always admired how fit and together you are - 'Fitchick' really suits you.  I think about you when I do strength training classes.  I totally agree that I shouldn't (and can't) settle for this as my life.  I was happy and productive before bc, and all I've every really wanted to do was to get back and stay that way.  I may be down but I'm not out and I'm determined to keep fighting to get my quality of life back...I know it's nothing compared to what others are going through but it's important to me!

Kerry 

I don’t know what to do, or if there’s anything I can even do, at this point.  Any comments, advice, or experiences would be greatly appreciated….

I finished dose-dense AC/TH chemo about 16 months ago and Herceptin about 10 months ago.  Shortly afterwards I had a prophylactic mastectomy w/immediate reconstruction (I also had a mastectomy pre-chemo) and had revision surgery about 4 months ago.  I recovered quickly from the surgeries, tho my skin has been slow to heal from the latest surgery due to the previous radiation.  Chemo and rads did a number on me.

I’m now 49 years old and in otherwise good health.  I’m an at-home mom and have lots of help and support (my dh works from home).

My energy level has of course been down since treatment, but I’m becoming very discouraged as I feel it’s getting worse rather than better.  I actually felt better a year ago than I do now.  I sleep 10 or more hours a day and just don’t feel I have the energy to do very much.   I don’t think I’m depressed (tho I’m starting to feel like that now); I’ve been taking anti-depressants for many years and my psychiatrist who knows me well also feel that this is physical rather than mental.  I still want to do things and do as much as I feel able to, including enjoyable things, but it doesn’t make a difference in how tired I feel.  My husband says I look tired almost all the time.  I’m sick of living this way.

I take a multivitiman daily and vitiman B-complex which has helped in the past but isn’t helping now.  I’ve been exercising 2-3 times a week and have tried doing both more and less exercise but it doesn’t seem to make a difference either.  I’ve tried giving in to the tiredness and fighting against it; again no difference.

My onc. and nurse-practiconer have said to give it more time and also to accept the “new normal”, but I’m not ready to accept the current situation as normal.  I’m going to call next week and speak with them again; also to speak w/my psychiatrist and try a new or supplementary anti-depressant.

Of course I have to keep going w/my life, keep exercising as much as possible, etc. but I’m just so tired of this being tired.  Am I just too impatient?  I know that there’s no “magic pill” but what, if anything, has helped people?

Or maybe I’m just a lazy complainer.  I’m beginning to wonder about that also.

Anyway, if anyone has any advice or info. for me I would love to hear it, because I’m fresh out of ideas.

Thanks,

Kerry

We have a similar diagnosis.  I also never heard those discouraging statements about chemo and herceptin - they don't sound correct to me.  Bot my onc. and my own research show a very favorable prognosis for us w/very small chance of recurrence.

Angela,

I'm thinking of you and sending prayers and hugs your way.  Your posts have helped me so much, you truly are a strong and inspiring person.  I hope you go on that vacation soon - you deserve it!

Kerry 

I also had two skin-sparing mastectomies (in two seperate surgeries); I do have some sensation in each breast - about half of what I used to.  I have the impression though that this is not typical.  I am happy with my silicone gel implants though, they look good and I have enough sensation so that I don't feel I'm missing much.