Topic: TRIPLE POSITIVE GROUP

Nov 29, 2012 05:30 PM SpecialK wrote:

pbrain - can you get some extra IV fluids as well?  Might help you flush and may really help with nausea.

Nov 29, 2012 06:11 PM Bren58 wrote:

Pbrain - I sure hope your chemo goes better for you this time around!

Nov 29, 2012 06:38 PM cgesq wrote:

Pbrain,

My 2nd and 3rd treatments were way more tolerable than my first.  I guess my body wasn't prepared for the shock of the first treatment.  I also learned how to manage some of the side effects, so I felt I was more prepared.

Nov 29, 2012 09:17 PM cypher wrote:

LeeA, I still think it’s odd that they are starting you on herceptin alone.  Yes those are the drugs most of us get, and Dr. Slamon recommends.  LeeA, what is the thing on your arm if not a lymph node?  Really interesting that they are starting herceptin first.  I’ve never heard of that.  I’d be interested in the explanation for that.  It sounds logical -- I wonder why they don’t do that more often?   

Pbrain, dancetrance had some article about how it seems to be genetic how people respond to chemo in terms of the side effects.  I remember that from awhile back even though I’m new to this thread ha ha.  GOOD LUCK TOMORROW!!!

Hey did anyone who had the side ache thing also have weird smelling pee?  Since we’re all about TMI here… dechi so glad to hear you’re in the clear with it! 

Lago, I find it bizarre that no one has snapped you up yet!  How is that possible?

TonLee, are you aware of research that shows that a slower infusion time would be better?  If so I would love that info.

Bren, what can I say?  Eesh!

Omaz – I have maxed out my PM quota for the  day but if you could please PM me your rads protocol, I would so appreciate it.  I start week after next. 

Cami, I have a document open on another screen where I respond and comment to these – I would never remember either!  Hence the epic length of some of my posts.

Nov 29, 2012 10:59 PM cypher wrote:

It's interesting.  It seems like a smart idea. I wonder why more oncs don't do that.  Are you going to be on it for more than a year total, do you think?  Or is the idea that you'd start earlier and end earlier?  I've never heard of anyone else doing it that way but it seems so obvious in a way.  Hell, I had 5 weeks btw my lump and starting chemo b/c I wanted to take a trip - if they had started with the herceptin they could have given me a dose before I left even if I wasn't sufficiently recovered for the hard stuff.  I see why you were so excited about your onc -- thinks outside the box it seems.

Nov 30, 2012 04:50 AM lago wrote:

PBrain I too let them access my port many times without cream. Some nurse's are better than others. My chemo nurse was amazing. I never felt a thing. I tended to forget most of the time… and my last time accessing the port was for the blood draw before port surgery. I was creamless because I forgot. To be honest I don't feel the cream worked very well on me.

PBrain you are consuming lots of liquids, right. It really helps. 20% reductions should help.

LeeA I can understand why they are starting you on Herceptin if you aren't ready for chemo. Eventually you will get them together but I'm sure they want to get you started on Herceptin as soon as possible. When your body is ready for chemo you'll get it.

cypher highest unemployment rate is found in folks age 45-55 but it does look like things are started to improve, slowly.

Nov 30, 2012 05:38 AM ashla wrote:

Re herceptin infusion time. I brought the subject up and plan to do so again as a warning. This is a situation that if you heed the warning may cost you half an hour every 3 weeks and but save your heart function. I frankly don't see a downside but please tell me if you disagree.

We discussed it in the forum previously but had a larger discussion when I had my first and only 1/2 hour infusion. I believe it was my 16 herceptin infusion and my 10th herceptin only so I had plenty with which to compare. I went in feeling great and came out knocked for a loop and it lasted for weeks. I didn't get any other infusion meds . It took me days to figure out that it could be speedy infusion. I asked others in the forum and it seems that a few who have had heart issues had the fast infusions. Ton Lee got all of hers fast so had nothing to compare.

Nov 30, 2012 07:56 AM Relda wrote:

Helloooo ladies!  I am jumping in from the TCH thread - LeeA and I go to the same onc and I just wanted to tell you that starting Herceptin ASAP is something our wonderful onc has done before, at least in my case he did.  I was diagnosed with a recurrence a year ago October (24th to be exact).   I spent November getting all the tests (bone scan, PET scan, EKG. echo, breast MRI,) and right before Thanksgiving I had my first Herceptin infusion.  In my case, my husband and I had a trip to Florida/cruise planned for the last week of Nov into the first 2 weeks of Dec that I did NOT want to cancel so I didn't want to schedule my surgery (lumpectomy) until after the trip.  After some discussion with Dr. M on the treatment schedule we both saw no reason to wait on the Herceptin so I had the one infusion before I left and another after I got back, had the surgery on the 21st of Dec, then started radiation in Feb (I did a clinical trial that determined the order of treatments) THEN I started chemo in mid March, all the while continuing with Herceptin every three weeks.  I will be having my last infusion in Decmeber.

So yes I agree that we have an awesome onc who thinks outside the box and wants what's best for his patients, who told me I should absolutely go on our vacation even though other docs, friends and family thought I was nuts and worked out a treatment plan to accommodate my wishes.  He is the BEST!

Nov 30, 2012 08:19 AM Pbrain wrote:

Thanks everyone, I'm headed off.  One of my friends who didn't agree with the screaming about my dirty house is taking me.  He's a nurse and likes to scare me to death with gruesome chemo stories.

I'll keep everyone posted and hope you all are feeling good today!

Nov 30, 2012 08:23 AM ashla wrote:

Very interesting about starting herceptin alone first. As long as you get the recommended TC combined with H later ..or whatever other protocol.... And the same total yearly dose..why should it be a problem?
Change comes slowly in these protocols and I can understand why.

Nov 30, 2012 09:52 AM lago wrote:

Eileenohio I have only met one other triple+ in person. She was diagnosed a few months after me. We have the same team of doctors too… and she lives in my building! Oddly enough she's in her 60's and I was 49 at diagnosis.

My nails (all 20 of them) are still brittle and looks like they are going to stay that way. My dermo say its taxotere.

Nov 30, 2012 11:20 AM ashla wrote:

Ditto Lago and Kelloggs on my nails...used to be great now it's a struggle to keep them from chipping but it's no big deal as far as I'm concerned.
On what I hope is a postive note for those who follow...I have a appointment next week f or my first haircut post treatment! 9 mos PFC! And I was late losing it and very, very slow coming back. Since my last herceptin last month it has definitely speeded up.
Have no idea what to ask or except to make it look neater . Right no it's very much like Halle Berry's hair style but uneven. It grew in all different lengths and very, very wavy. It was stick straight before! If you pull out the curls it's probably about 4 inches in some spots.
I clipped lots of pics for months..I like Jenna Elfman's short razor cut last year... but I've got curls!
Any suggestions?
Snowing here.

Nov 30, 2012 11:59 AM dechi wrote:

My nails are terrible also.  They keep chipping and peeling and getting shorter and shorter.  Yuk...

Nov 30, 2012 01:42 PM MsTori wrote:

Ashla- straight irons are great! And not too time consuming with a good brand. I have the Chi and love it. Congrats on first haircut! Yay! All of you are an encouragement for me. Thanks for staying around and being here and sharing.

Nov 30, 2012 02:18 PM kayb wrote:

It took a full year after Herceptin for my nails to get back to normal :-(