IBC ladies please,how are we all doing!

Hello, Jessozzie

  I'm not sure if the stage but I know it's 3, because my lymph node are  involved and not sure how many because I have not had surgery yet. I'm in taxol only and will be finish next month and then surgery. 

Hi Jess

  I'm 32, and yes I'm having a mastectomy but I'm hoping they can spare but nipple but I know they don't recommend that with IBC. I'm not sure if I'm having radiation, it just seems like it will cause more problems. I was trying to fight this the natural way but my breast was to painful so I talked my MD into letting me get just taxol. I take about 15 supplements and herbs a day and I have no side effects. Well my hair is thinning but in using the cold caps for that and I should make it out if chemo with hair. My tumor was and still is pretty big, so we will see. Did they save any of your skin doing your mastectomy? 

Hi Jess, thanks for starting this topic. No one has told me what stage I am, but the affected area is huge, and there are at least three affected lymph nodes, however thankfully no distant metastasis.  I'm having simultaneous chemo and radiation now. I'm holding up, but can't make myself work on any projects, am not working, and haven't invested anything in the future which is probably bad. Surgery will be for the 20th of May. P.S. I clicked on "carboplatin" and taxol for my current chemo, but it's Cisplatin, not carboplatin, and I couldn't find it on the list.

I'm past treatment, but thought I'd check in anyway just to share some positive outcomes. I was diagnosed in 2010 with unspecified stage, because I started chemo before I had a PET scan due to some ridiculous insurance screwup. I had 7 months of chemo, double mx, rads, Herceptin for a year, and reconstruction. It's 3 1/2 yrs later and you know what? I'm totally fine.

Not "fine" for a cancer survivor, or any kind of 'new normal'. Just ... fine.  Happy, healthy.  Feel good, look as good or better than I ever did, have a full-time job and homeschooling two kids, building a house, wrangling 3 huge dogs, gardening, traveling, laughing, and having a really fine time being alive. Much more energy than most folks my age. After IBC, ain't much o' nuthin' that frightens me, or even bothers me much. Now, the first year after treatment was psychologically the hardest of my life and there were some very rough times, but your mind heals just as your body does - slowly but surely, step by step.

So - I've been very, very lucky, without a doubt, but I'm not some crazy outlier in the least - treatment is getting better and better. Close to 3 yrs ago today I remember sitting on my lawn on a sunny Spring day and thinking "there is no way in hell I'm going to be able to stand up, I'm going to have to be carried in the house". I was so weak, so sick, so confused and so exhausted. I kind of rolled over on to my hands and knees and slowly, was able to stand.

A few minutes ago I just came in from running at a breakneck speed around our property, playing soccer with a big, young, strong yellow Lab. There is much to be hopeful about!

DX with stage 3B in September 2011 and stage 4 in August 2013.  Doing well with herceptin and tykerb.and hopefully for the foreseeable future.  Currently NED   Working , raising my kids and enjoying life.  I will be 60 in July, so my stamina is not quite what it was, but I am 60 and have cancer.  I will never be 40 without cancer again, nothing I can do about it, so just living my life and enjoying

I agree with Akevia, thank you Sherlocked ! I definitely  need to hear that. Any positive news re beating this disease is a big boost !!

Jess,

Great topic! I just finished my 1st round of FEC chemo with, thankfully, few side effects. Even the Neulasta injection caused no pain, etc. Unfortunately, my previous chemo of Taxol and two hormone-targeting drugs left me in a hell called chemo fog. I lost all memory and basically all function for roughly a month. If the next 3 chemos are smooth as this I'll be delighted.

I was diagnosed in late Nov. 2013, at stage IIIB, triple positive, with 1-3 lymph nodes involved. After this first cycle of chemo, I head for surgery. By choice, I'm have a double mastectomy w/o reconstruction. Then more chemo and radiation.

I'm very lucky in that I live within 75 miles of one of the USA's national institutes for cancer and was seen immediately. (Well, okay, I used my old girl network to wheedle my way in.)

Interestingly, of the 3 masses seen in my breast, the smallest of which was 2.1 X 1.5 cm, 2 are no longer detectable by imagery or ultrasound and the sole remaining mass measures out as an irregular shape smaller than .11mm.  Now if I can just avoid more chemo fog...

I know how lucky I've been yet I still believe in being more aggressive than IBC. This board has been an amazing resource. Often I wish I could mumble some magic words so that everyone gets well quickly.

Hope you are enjoying the fall weather. I was last down your way in the fall and it was glorious.

Sending good thoughts to all who, have posted,

bride

I had my first follow up today, 3 mo since treatment ended. My Onc said everything looks good, felt normal. Scans in 3 months. Happy.

Juane43, I'm so sorry to hear about your recurrence already. It's a lot to have to go through it all again so soon. Goodluck to you.

juane43 that's true that's something to be greatful about, it not being mets! This is one nasty disease we all are battling. My rads oncologist told me a story about a women he treated with IBC 8 years about. She did ACT chemo, rads and reconstruction. Well her tumor started growing back in about a month and he said they didn't really know what to do.  They gave her more chemo and rads  twice a day, she now works in one of the Doctor 's office and she cured as he said, and that was 8 years ago. A success story I hope we all have. 

Akevia, thank you for sharing your hopeful story, and Juane, I'm so sorry you're facing this again.  You sound like someone who can grab on and persevere.  (((hug)))

Juane, we are all uncurable. There is no "cure" for cancer. The goal is to be NED, or No Evidence of Disease. I believe you can get there so do not get discouraged!

Jess,

Awesome topic!
I passed my 1 year with IDC and IBC BC stage IIIc then metastatic.  Treatments etc. are in my sig line.

I'm still in tx on Herceptin, Perjeta, and Femara....it has become my new normal txs and appts.

Meadow,

It WILL happen.   My last scan June was NED!!! for the 1st time since I was diagnosed.  Holy sugar beets.  Meds are working *doing the happy dance*...*out of breath now*.  My MO calls the plan "managing the disease".

Keep on healing everyone.  Peace.