Jul 2, 2014 08:09AM Carolben wrote:

Oh well, back to basics again - scan shows progression of existing mets in lungs plus "numerous new nodules visible".  So it's goodby Xeloda for me, hello Gemzar/Cisplatin.  Damn, I've been feeling so well lately that I thought they'd find NED, (bit optimistic, I guess)!!

Brenda you are on Gemzar/Carboplatin aren't you?  Did you loose your hair?  I'm doing an infusion a week for 2 weeks then 1 week off.  I hope to get good results as you did.  There is an enlarged hilar lymph node, which they want to watch - not sure exactly still what that signifies.  The cancer has already been in my blood and lymph systems, to get to the lungs.  

Had an ultrasound of liver, pancreas etc and all is clear there,thank God; waiting for results from bone scan.

After being on Xeloda and keeping my hair, it feels like I'm going back to 'serious' chemo again now - that's strange, but I guess it's the sitting and getting the infusion at the oncology unit, loosing hair etc - it's so obvious to everyone, whereas with hair people don't know you're on chemo.  Oh well, it could be worse, I'm still feeling well, so am determined to enjoy each day of feeling like that!

Jul 2, 2014 04:01PM susaninsf wrote:

Carolben,  

In my initial PET/CT scan I had "Extensive confluent mediastinal and hilar lymphadenopathy" but two months later it said "Interval resolution of FDG avid mediastinal and hilar lymph nodes".  In other words, the problem went away.  The way I look at it is that my lymph nodes were working hard to combat my many metastatic sites (brain, eye, breast, lung) of which I wasn't even aware.  Once I started treatment, lifestyle changes, etc. my tumors started to shrink and become less active and my lymph nodes no longer needed to work as hard.  I think of lymph node enlargement as more of a red flag that something is going wrong somewhere than a problem with the node itself.  Perhaps the more medical knowledgeable can pipe in.

Glad you are feeling well.  That is the most important.  That's what I try to focus on.  Like someone posted, "I look fine on the outside but on paper I look like hell".  I always say, "I feel fine but on paper I look like hell".

Hugs, Susan

Jul 2, 2014 06:52PM tryn2staycalm wrote:

Hi Ladies - sorry to hear of some progression here.  Not sure about the juicing.  I was told I should try it from a lady I know who also has had bc.  I am day 14 on the palbo drug trial and go in for my first blood work and see MO tomorrow.  My lymph node near left lung was noted swollen a couple months ago too and my MO said it was noted in the latest scan.  I will try to remember to ask him about it tomorrow.  Hoping your right SusaninSF and it is just holding the river from overflow and will go away too!  Wish you all find what works and with few side effects.  The worst one for me is the lack of appetite.  I force myself to eat but still better than the chemo was!

Cathy

Jul 2, 2014 10:38PM susaninsf wrote:

Roberta,

So sorry to hear about your progression.  Definitely don't throw in the towel yet.  I'm in a group of MBC women in my city and some of the women have been living with MBC for a long time, one woman for 15 years!  Many have come back from very dire situations to live almost normal lives.  Have you read the book "Radical Remission"?  That book really inspired me.  It's available on Kindle.

Hugs, Susan

Jul 3, 2014 06:43AM Carolben wrote:

thanks all, and your explanations of the lymph nodes is very helpful! Just another thing to watch! 

Sorry you are back here, Roberta! I sometimes juice, mainly when I'm not eating fruit or enough veggies, but on the whole I just try to get a variety of food into me. My appetite is also not great, tho I do get days when I'm suddenly hungry. It's like my body wants to make up for eating less, that way I manage to stay at more or less the same weight too. I can't get crazy about feeling I have to eat this or that specifically, I follow my body's messages, & when it calls out for red meat or whatever, I eat that.  But I'm not one to talk, my eating habits have never been very good, even tho Im not a junk food fan at all, & like "healthy" food, I'm just an 'erratic eater'.

Have heard of the Nutribullet, Brenda, it must be better as you get to keep the fibre, as opposed to juicing. I think attitude does have a lot to do with quality of life. If I feel positive, even tho what they say is not so positive, then my reality right now is good. And so the qol is good, maybe it's living a bit in denial, or never never land, but it does no harm. We are all amazing women facing probably one of the greatest challenges in life - living with a stage iv disease. It's not for sissies!!  Thanks for the reassuring words re Gemzar/Cusplatin, it always helps to hear from someone who's done the same chemo! I can't handle thin or patchy hair, I'll probably shave it then & maybe it'll grow back during the rest of the treatment. I'm also hoping this combo will kick some serious butt!

Cathy, how did your appointment with your MO go? Hope you got good news!

Susan, Love what you say about looking like hell on paper, but feeling fine - so true! Thanks for a very clear and positive explanation of the lymph nodes. I don't like not understanding things, & you cleared that up!  I'm in awe of you living with extensive mets and still being so positive! Are you on any chemo now, after your rads?