May 2010 Chemo

jen:  I am so sorry about the wait but glad you are have recon.. what did you decide to do? I did the saline implants. Getting nipples on Good Friday..

libraryJenn:  glad to hear you are feeling better. what a bummer. And I made an appt for new onc. Have appointment for next month. I am looking forward to hear what she has to say. NOw I have to transfer all paperwork,.. Your new puppy will keep you busy.. THe kids must be happy.

Okay what is everyone's thoughts on the new findings regarding removing the lymph nodes? The newest study suggests that they may not take them out if cancer presents itself. According to the study, it showed that women who did not have them removed (with cancer present) had the same percentage of non recurrence as did the women who had the nodes removed.

Denise:  I immediately thought of you and the trouble you have had with your arm.. It makes me sad to think that possibly we should of not had the nodes removed.

Again, the article leans towards that the more aggressive surgery, as they call it, would not be performed on older wormen. I guess the theory is that younger women have longer to live and more of a chance of recurrence.  Interested in your thoughts.  I know for one I wish I did not have my nodes removed.  I always thought why wouldn't the chemo kill the cancer in the node?

Where is everybody??? 

njbhwgirl:

The recommendation for exercising an arm at risk for lymphedema (LE) is to go slow: the official study of weight lifting used 1 lb weights with just a few reps, twice a week, and if any soreness or swelling showed up--the women backed off.

Here is the National Lymphedema Network guideline on exercise:

http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm

Please go slow, listen to the arm symptoms that the 3 lb weights caused, and consider seeing a LE therapist who could advise you personally

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Many women have gotten LE by overdoing it, and the studies were done in a very controlled setting. You can exercise, but slowly!

Kira (usually on the LE boards)

Denise -- 3 miles is great!  pat yoursef on the back!

Jersey -- I am having silicone implants.  I can't wait for squishy boobies!  After that I am going to do the 3D illusion nipple tattoos.  I contacted Vinnie Myers who does FAB work, but he is in Maryland.  Anyway he says he will be coming to the west coast sometime before the end of the year and if timing works out I'm gonna have him give me nipples.  Check out his work:

http://vinniemyers.com/section/105672_Nipple_Areola_Tattooing.html

I have been going to the gym 5 days per week for the past few weeks.  I've lost 7 pounds so far.  My goal is to lose 50 pounds by the time I am 50 (December of 2012 -- a very realistic goal).

Jenn -- how are you healing?

Jen

packjen:  what is 3d  illision nipple tatoos?  I looked at his website...How does this compare to regular nipples/tattoos..I am going on good friday for my nipples at sloane..PS is using skin from my fake breast to create..then 2 months later I get a tatoo for aerola... Can you explain difference?

I have had siicone implants now for 3 months. Little lighter than TE's but honestly they still fill fake. I guess that is one of things you have to live with.; What is everyone doing for their scars? I have been using bio-oil but was wondering if anyone tried scarpin or anything with siicone in it? I would love to lighten up my scars.. THey are not thick but would love to make them lighter '

kira: thans for the information.. I am so overwhelmed right now.does the side effects from this damn disease ever go away.. The taxol killed my joints, when it rains my breast area still hurts, and now when I try to go back to a normal way of life and re introduce myself to excercise I once again get slammed... I am so done with all this. Is there ever an end in sight?

  Hi May Warrior Sisters!  I've been plain old pooped and too tired to post...though I've been following everyone's posts.  Big hugs to each of you!  I can't respond to each individually right now because I am going to take a power nap in a few minutes.  I just returned from taking Leah on a college audition in Pittsburgh.  She's applying to musical theatre conservatories - so fun!  My DIEP was moved to 3/30 and I switched PS to one who is apparently world renown.  It's funny that several of you have mentioned wanting to switch oncs, because I've been toying with it as well.  I'm grateful for all the tips about LE and prevention.  I have a fair amount of tightness and soreness in my armpit, perhaps I should go to PT.  Kudos to those of you exercising and doing yoga!  Love to all of you!   Daiva

Jen-I've seen Vinnie's work on some nurses at Hopkins-gorgeous! They look so real! Both nurses had BC and were happy to show me:-)

packjen: wow I looked at pics again. that is totally amazing..

I hear you about surgery but according to my ps, the nips are done in his office under a local. He said I had enough skin to do the job...I am probably going to go for it so I can be done with all this crap by June.

As much as the 3d appeal to me, I don't want to travel to MD...I hate going to NYC as it is(lol)

Happy Valentines Day Ladies!

Happy Valentine's Day ladies.  Kind of a weird time for me because I used to get mammograms every year as my Valentine's gift to my family, so coming up on the DX anniversary.

We leave for Disney World on Saturday.  Still have not told the girls.  I went to Michaels craft store today looking for blank jigsaw puzzles so I could write out the surprise and have them figure it out -- but, alas, no blank jigsaw puzzles to be found.  Maybe a treasure hunt or something.  I am open to suggestions, ladies.

Paxton -- we have all been "bad mommy", so I feel your guilt and pain.  I choose to believe that my kids remember the good stuff way more than the bad.  At least that's how I rationalize it.  I know what you mean, too, about the cancer always lurking.  I have a suspicious node and am waiting for an MRI to Dx it.  And don't they ALWAYS say "It's probably nothing"?  Yeah, right.  That really doesn't help.  My thoughts are with you.  Keep us posted.

Sweet thoughts to all my May sisters.

Jen

Good morning, ladies

Daiva It's great you found a renowned PS, it's always comforting to know that you're with a real specialist. I remember I felt better after being told that my BS was one of the best in this country.

Jen Going bra-less sounds tempting, good for you :-). I can't do that right now as I feel some pulling in my lumpectomy breast after the surgery - guess it's part of the healing process.

Paxton Arrgh, that sucks! I hope your check-up will show everything they found is B9!!! And don't worry about Gage - he'll forget as we forgot about our Mums being bitchy ;-).

Jenn Great to know you're healing!

Happy belated Valentine's Day :-).

Hugs!!

Njbhwgirl..I have been complaining about my balance for some time now..It doesn't help when I get on the Wi and it asks me if I trip when I walk ..smart ass thing! lol This is one thing the PT is going to help me with ..

We have never surprised the kids with a trip, sound like so much fun for the parents to see the reaction. They both had season passes to Disneyland when we lived down south. so it really wasn't a big deal to them anymore.  Everyone once they turned 10 had their Birthday parties there. After a whlie they didn't want to go .  Now that they are older they go all the time!

There are so many things I seemed to have forgotten about at work. Makes me feel very insecure about what I'm doing! I am hoping that it will all come back with time.  Give me a headache when I realized I have done something  wrong..lol  ..I will have to do it all over again.OK

Today I feel like I have a hang over from all the sugar yesterday..Ihaven't really eaten sweets for a while .. but last nights ice cream with strawberries, chocolate and whip cream did me in I couldn't sleep .. 

Hey Pax... I've heard good things about the sleep number... and good and bad about the memory foam.. seems you either love or hate the foam one, and they're quite expensive, so I'd be sure before buying that one!!    I love getting new beds!  We got our last pillow top about 4 years ago. 

Denise - I was the same way with Disney.... we went every year for soooo long.... I got to the point where I stopped going when I was about 12 or 13.... but all of my kids have been at least twice.... I don't want to take them every year because I'm afraid they'll get tired of it!!  -- You will get back in the groove at work!  I think they were giving me easier assignments when I first went back to work too, and I had plenty of brain farts... but I'm getting settled in... you will too!!  Don't stress... it's just stuff. 

Jersey - Good job at the gym.  What kind of things did he give you to do?  I've been avoiding any exercise with my arms, but that can't last forever!!!  I just got back from a light run this morning.... I went to bed really early and woke up very early and went out at 5 am!  I'm glad there were no critters out.... deer have crossed right in front of me while running, and alligators have been seen on occasion... I stayed in the neighborhood and didn't venture over to the golf course side just in case!! 

Magda - When I get my boobs done, I'm not sure I'll ever wear a bra.  I am soooooo looking forward to being able to go without I think because I have been so tortured  by having my boobs so irregular for so long now.... I'm going to go braless until my family is mortified and begs me to put one on!!  LOL. 

And, btw... I think my exchange surgery is going to be scheduled for May 4th.  They are going to call with the definitive time, but said there should be no problem.  That will give me time off work, and then we are going to PA and DC 6 weeks after surgery before I go back.  Doc said he would write me out of work for 6 weeks with the DIEP... so, the plan is DIEP on the right and a small implant and lift on the left.  Unfortunately, I don't have enough fat to make 2 boobs.... 

And, my rad onc really pissed me off.  I met with her last week and explained my disappointment in getting only an annual mammo... blah, blah, same ol' complaint from me... mammo missed this so how can I feel comfortable with it???? And, my onc doesn't even do blood tests.... blah, blah.  She goes on to make some joke about PSA standing for "prostate stress" something... and I said, yeah, but you still do the test.... they won't even do any tests on me!!  She went on to say that also ultrasounds and MRIs would not be done because it was not feasible.  She said that with the radiologists malpractice, they would have to biopsy every little thing..... and I left feeling pretty crappy about the whole meeting.  Granted, she has the compassion of a scorpion, but I felt like a 'bad' patient.  So, that afternoon I was meeting with my plastic surgeon and decided to be a better patient.  So, in light of my morning meeting... when he mentioned a prophylactic mastectomy again, I started to consider it... I mean if the only screening I am going to get is mammos, I don't trust it.  So, now, I'm really considering having my boob removed for just that reason, and I tell him that they won't do any other tests, and he (is very compassionate) asks me who my BS is, and tells me that he will talk to her about them doing more testing on me.  I love him.  OK... so, that is my rant. 

Do all of you have at least blood work done???  Anyone else not get tumor markers checked??

(((HUGS))) all!!! 

Paxton, we have a memory foam twin bed in our sun room/guest room.  It belonged to my FIL and we got it when he passed away.  I absolutely love sleeping on it (when DH is snoring too much!).  It is very firm but kind of cradles you.  I think Leanna is right -- you would either love it or hate it.

Leanna, after I finished with my rads the only thing they scheduled me for was a f/u visit w/my onc 3 mos later.  No tests at all.  I couldn't believe it.  So I went to see her and that is when she felt a very small "suspicious" node in my neck.  That generated a request for MRI which I have to wait until after my exchange surgery to have (metal in the tissue expanders).  Anyway, if she hadn't felt that node she wouldn't have done ANY f/u testing.  I have never had any kind of tumor marker testing.  I did get a bunch of standard blood work and an EKG done yesterday in prep for my exchange surgery.  It is a very tough decision on whether to have a prophy mx.  When they found my 2 tumors and told me that a lumpectomy would take about 25% of my tiny breast, I decided that I would have a double mx.  For 2 reasons -- one: I don't ever want to go through this again; two: symmetry was very important to me.   I hope your PS can convince your other drs to  come up with reasonable tests for you.

Jersey, you should send a private message to TimTam on this site and ask her permission to have access to the picture forum (totally different site from BCO).  Many women have posted pics of their reconstructive journeys, including nipple recons.  Apparently there are a few different procedures to make nipples and I assume they produce different results.  I do know that the nipples tend to shrink after a while.  Also, if you look at some of the "before" pics on Vinnie's site you can see some reconstructed nipples.  

Jen

ok first... on the wanting more testing... My Onc does the tumor marker, blood testing before to see her ..I go again next month for that .No scans ..had had a full body scan before the surgery to make sure it had not metastasized.    

2nd last night I went to a meeting with some radiologist.. it was about why they do what they do and when how much radiation you get from mammograms and things like that .there was a chart about how much radiation you get from everything ..mammograms are just like a flight from California to Paris and back .Then young man got up to talk about testing they are doing with 3d imaging, and how it is getting better and better they are able to pickup the smallest differences in the breast. I was really thinking this was for women who just were diagnosed or maybe are at high risk. Another thing they told us about is that women who have mothers or other 1st relatives who have had BC it depends on when the BC showed up pre or post menopause on whether or not there risk goes up.  If your mother had breast cancer after menopause your chance of getting it are then same as every other woman in the world.  The risk goes up if she had it before menopause.  

on nips....again last night I was talking to a woman who  I had met during radiation .she was getting ready for her exchange also..we were talking about the scarring we had she said she had very little ..her PS, when he put her expander's in he made her nips they are very nice he used her skin left over from the DMX and did them right away..She showed me and they look great. I had never heard anyone say they had the nip put on right away!

oh my its 12:am better go to bed ..good night ladies!

Paxton - I have a AWESOME bed - it's a Sealy with a thick memory foam pillowtop.  It forms to your body over time too, as well as retains warmth so that when you get out of bed in the middle of the night to pee, it is still warm when you get back.  We paid a fair bit for it, but it was so worth it.  The DH and I used to have back problems (he has mild scoliosis (sp?) and I carry tension in my shoulders.  I haven't spent nearly as much on chiro or massage since we opted for a better bed.

So I totally blew off my oncologist today - changed my appointment day to a different day even though I knew he wasn't working and would have to see a different oncologist that sees his patients...I almost fear going because he made me so disappointed last time with his Debbie Downer attitude.  In some ways I feel like I'm just being a baby, but I was ticked - I just had an appt two weeks ago and I got a letter in the mail saying that I had to go to another appt in two weeks...I am just so ready to be done with BC!  Leanna, I think you are the only other HER 2+ on here, do you have to go for monthly appointments on Herceptin?

On a happier note, I went back to work today for a visit to gear myself up for going back to my position as teacher librarian on the 28th...it's Feb. break next week so my official return date is Monday Feb 21st, but I don't have to go in for a week   It was great!  I missed it so much!  There is a lot of new technology and so many great books that came out in the past year, so I'm going to be in major catch up mode until Easter for sure, but woohoo I live for it!  So, so happy to be going back to work when at one time I didn't even know if I'd reach my 29th birthday.

Oh - and here's a humourous puppy update for those of you who aren't friends with me on facebook - Charlie (the puppy) had a trial period of being home by herself today for about an hour and half.  I wanted to see if she would behave herself.  OMG - my house was a disaster when I got home!  She got into Connor's crayons, and ate the majority of a green one, and part of a yellow one; pulled out all of my DH and DS socks out of the laundry hamper (left mine alone) and dragged them upstairs to her bed; tore the bark off of a fair bit of firewood, dragged it up to the carpet and absolutely demolished it, and re-organized the recycling.  At one time I would have probably been mad, but OMG I laughed SO hard!  Like Leanna said with the car, it's just stuff   Trial failed and BTW, anyone know of a great way to get crayon out of carpet?