TRIPLE POSITIVE GROUP

Hi everyone,



Still here and reading along each day, but life has been pretty busy (work, study, family stuff, exercise) so I really haven't had much to say. Love all the interesting links that you guys put up!



I'm off tomorrow for an "unscheduled" bone scan. Had some new back and sternum pain that I mentioned to my MO at my 3-monthly appointment. He has taken it seriously enough to send me off for this scan... I'm hoping it's just more of the arthritic changes that I was left with after my year of chemo!



Apart from that, I am well. Trying to get out and exercise more which is making me feel fitter but is not making any difference to the scales. I blame the lack of weight loss on the Tamoxifen (I was pre-menopausal when this all started).



Jenn

Morning....long night...up and down throwing up...hmmm..lots of heart burn...however I do seem to be on the puppy schedule.....Cooper was nice enough to hold my hair (literally one hair) back...lol...I am so funny this early in the morning.

Wishing everyone a happy morning!

Glad you had a nice birthday Jane. Happy belated Birthday.

ChickaD, sorry you had a bad night. Hopefully today will be better.

TonLee, great to hear from you. Glad you checked in and updated us on your new job.

Jenn, hope your bone scan doesn't show anything serious.

Ashla, thanks for all your interesting links!

Just to add, my ER status was 90%, PR was 20%, HER2 was 3+++

Pbrain Happy Birthday!!!

Jann  Good to here from you.

Assistant professor of oncologyRobert S. Miller @Johns Hopkins for an excellent explanation of EHR...the new electronic health records and why it is important .

http://www.cancer.net/sites/cancer.net/files/understanding_ehr.mp3

Alaska, good points, but the concern with us her2+ women is that, if it recurs, it is likely to recur as distant mets aka stage IV.  If you were weighing all this toxic stuff v. odds of a local recurrence, it would make sense to do the analysis you’re talking about.  Btw, I know someone who had a her2+ tumor less than .5 cm.  She only did surgery, lump + rads + tamox and she recurred with mets to her liver.  Of course there is no way to know for certain whether it would have mattered if she had done chemo + herceptin as well, but statistically speaking it is less likely that she would have recurred. 

Goutlaw, triple negative has a worse prognosis than triple positive.  They have a lot more in their arsenal to help us.  So don’t your prognosis is hers. 

Walking, that’s great news!

Patin, thanks for checking in.  Sorry I didn’t report back – I didn’t get the path report until late in the day on Friday.  On Thursday I saw MO.  He said the swollen lymph node would not be from a UTI, would not be from ovarian cancer (he was half laughing at me at this one), and would not be from bc b/c it doesn’t spread that direction.  He said there is a slight possibility that it would be a lymphoma, but odds of my having a totally separate cancer at the same time are very low.  He said a lot of his patients have a lot of wonky random symptoms for a year or so after doing chemo, and most of the time it turns out to be nothing in particular and eventually goes away.  He thought this was something along those lines.  On Friday, BS called and said the lymph node biopsy didn’t show anything suspicious.  BS said the only way to know for sure is to do a biopsy of the lymph node.  However, that puts me at some risk, even if low, for leg lymphedema.  He also was practically laughing at me when I said I was concerned that it could be a sign of ovarian cancer – he said the odds would be astronomically small given that I don’t have the gene.  He wasn’t sure what would cause it but put me on antibiotics for the UTI and to see if it gets rid of whatever mystery infection might be causing it.  He agreed with MO.  I asked him what he would do if it were him, and he said he would just keep an eye on it for another few months.  He said the symptoms of lymphoma are weight loss, low energy, night sweats, and other swollen lymph nodes.  I have a little night sweats but that is expected from chemopause etc.  I don’t have any of the other symptoms.  So I’m just going to take a chill pill and let it be.

On another note, MO said I can be de-port-ed!  Very happy about that since they gave me such a huge port!

Pbrain, happy birthday!  I haven’t checked this for a few days and I guess it’s in fast moving mode again…. That’s really upsetting that you got a comment like that from your mother.  Sheesh, you have had a really hard year and have dealt with it with grace and humor and bravery, from what I can see from here.  All that stuff is really hard on our bodies and it takes awhile to get back in gear.  You and everyone around you should cut you a huge amount of slack!  What would you think if it had been a friend of yours rather than you?  You’d probably be pissed off for her that anyone said that to her. 

Janiepants, what does your path report say?

Tonlee, good to see you.  ((waves))

Rozem, get thee to a doctor and report back to us!  (hugs)

Ladies, ugh.  Do you mean you’re not sure whether you are/were her2+?  I may be mistaken but I don’t think there are too many of us triple positive women who have the brca gene. 

Ashla, I don’t think it’s unusual to be triple positive.  I hear it’s a bit unusual to be highly er/pr+ and her2+, but a few of us on this board are (including me).

Fluff, I recommend a knee brace in the meantime so you don’t injure yourself worse.  I have some sort of knee injury and am waiting for an mri on Tuesday but the knee brace helps when I’m walking and such.

Pbrain, I think one of the issues that Alaska raises – also has to do with how you respond to it.  For me, treatment wasn’t THAT bad, and I seem to be tolerating the tamox ok.  So I don’t have any regrets.  But your tumor was smaller and you really had an awful time with chemo, and are still having an awful time.  I wish they had some way of predicting that better so you can factor that into your decision making.  That being said, see above – woman I know, no TCH, now mets to her liver.  Of course, she didn’t do herceptin either before so maybe that’s a different scenario.

Jen, fingers crossed that you have arthritis!!

Can someone tell me what juicing isor green juicing?

Cancer fighting foods...

http://www.mdanderson.org/publications/focused-on-health/issues/2012-june/preventiongrocerylist.html

Cypher - so glad it's nothing to worry about!



Interesting that the Dignicaps are only chilled to 41 degrees, if the article is correct. That's about 70 degrees warmer than the Penguin people recommend for their cold caps! of course the Penguin caps don't stay at -32 degrees once they're on your head, but out of curiosity I checked one of mine after it was off my head and it was still below zero. I will be very interested to see the results of the study!

fluffqueen01 I know I used Scaraway about 2 years after BMX after and I found it softened and flattened (less bumpy) the scars quite a bit. I did it for a month. It really made a big difference. It does sound like scar tissue but if you are really worried ask the next doctor that feels you up (onc, BS, Gyno etc.)

Thanks again to everyone.  I've decided to let it go.  I love my mother even if she does stare at fat people.  I agree, being chunky is no fun, but I'll work it off as I get to feeling better.  I want to be able to garden like usual next year, and yeap, I've been through hell.  I don't know if I mentioned this before, but I heard a country song a few weeks ago that I hadn't heard since chemo.  But during chemo, it was big (they sing about how every storm runs out of rain).  I used to sing along to that song on my travels down chemo lane and when I heard it out of nowhere, I felt so terribly sad and so forlorn.  I know I used it it to make me feel better emotionally during that awful time, but now that I physically feel beter, I wanted nothing to do with it.  It's funny, songs are like scents, they bring so much back so quickly.

Cypher, I think you are probably just a ok, fine, good, absolutely fabulous   Like I said about my poor Dad with advanced adenoma in his lymph system, nothing was bilateral.  He had a node in his left wrist, but none swelling in his right, a left cervical node, but clean nodes on his right.  I think you should do the wait/see.  I'm so happy for your news.

Q for everyone.  I am still puffy from steriods, I think.  I had dexamethasone during my first 3 treatments and then I had a reaction to treatment number 4.  They said they were going to raise my steroid during my weekly chemos (so another 8 treatments) and I think they were giving me a lot of hydrocortisone.  I know all of this stuff can still be doing things months later, but did anyone have the puffys, moon face, cankles for a long time after treatment?  I'm ~5 months out, and a tid bit worried my cankles are from poor cardiac function since I had a not so good echo and am on the herceptin holiday.

Fluff, you are just getting beaten up!  I hope you enjoy that cruise and just get to chillax! :-)

They have cold caps (dont know what make) in the chemo room of the hospital I go to, also bands for eyebrows, and wrists and ankles for your nails. I couldn't use the cold caps; painful mets to my neck and spine meant I literally couldn't take the weight of it! But I do see a lot of women using them.

The French are very clued in as to how image can hugely effect recovery, we get a lot if advice in skin care, etc. we're also told at the beginning of chemo to always coat finger and toenails with nail varnish containing silicium and UV filters to protect our nails. I did this and none of my nails changed color or got damaged.

Nicky

NickyJ,

That is so great that the French system considers the whole person..both physical and psychological as being vital to good care and restoration of health! You taught us somethng new today about the nails. Mine have never recovered.

Just checking in and forgot evrything I read.  But I'm glad to hear Jenn u have no issues with u'r bone scan.

And Pbrain u sound better And if I didn;t say it then belated Happy Birthday, u have a good year to look forward to.

I hope we all do and if  u'r in chemo now good luck and hope u'r Se's are minimal.

Fascinating article on why innovation in medicine takes so long..posted by BC ONC..

http://www.newyorker.com/reporting/2013/07/29/130729fa_fact_gawande?currentPage=all&mobify=0