**NEW** Starting Chemo March 2009

Alyad

Michelle, LOL at the mental image of your water park mishap with prothesis popping out- shooting across the pool or something! I am happy with my TRAM as well- with the recent LE- the assymmetry has gotten more pronounced  but rads did shrink it enough to where I felt stage 2 revision wasn't necessary anytime soon. Right now a bra is out of the question- too binding- I'm trying to find a good compression tank top- or maybe will cut one shorter into sort of a long bra that goes down to mid rib or so- I think a tight bra contributed to the LE. So hopefully I can find something suitable to hike in. Hiking clothes are somewhat sheer texture- right now I'm sporting the one headlight look and I'm not really sure how I'll deal with that. I've tried a resusable silicon pastie thing and it just looks even worse I think.

the other big news today- Aunt Flo finally decided to come back around after being gone about 9 1/2 months. I can't say I missed her, but I'm still somewhat thankful for one of the last reminders of things chemo did to my body to be gone! I really wouldn't mind having my brazilian back tho

Francine- having a compression sleeve for flying wouldn't be a bad idea. I only had one node out, but scar tissue from surgery can cause lymph flow blockage- along with tissue damage from rads as well. Lymphedema can come on suddenly many years after treatment- I wish our medical system was more proactive in LE prevention.

pickle

Francine: You are right....I'll pull the c card and blame chemo brain...lol

 Easter is April 4th. I would like to arrive Thursday the 8th and fly home Sunday or Monday.

What days does everyone else want to go and depart?

Any hotel ideas?

ChrisC433

I will be coming into NYC about 8 on Friday night (9th) and leaving Sunday.  Only about 3 hours from here.  I think my 2 neighbors that also had BC this past year are coming as well.  Can't wait to meet all of you!

didle20Diane

I had delayed reconstruction in Oct.  I had a L mast in January and waited until Oct to have a R mast and had 2 TE's put in place.  The fills were a nightmare in the beginning......I should have had less saline put in but was trying to tough it out and get it over with.  It took almost 10 weeks to get 400 (in L) and 300 cc's (in R)....my last fill was last Tuesday.  On Wednesday my L expander went flat (except for the expander itself) so I have to go in for immediate surgery Monday (PS wanted to do it today but couldn't order the implants in time).......my port in the TE was compromised somehow....they think it is a manufactures defect.  Of course this happens to .00000001 % of the people that get expanders....the drag is it wasn't a slow leak, she tried to refill me yesterday and all the saline dripped out like I was breastfeeding UGH..........I had to sit in their office until it all leaked back out.  I was supposed to have my exchange surgery Feb 19.  My PS is hoping to get both implants in on Monday and I will be done.  As long as my skin hasn't contracted too much I should be able to get the implant.  If I need another TE she will be able to fill it back up most of the way so I only need 1 or 2 fills and can still have my exchange surgery 2/19.

Beth, I am still happy with my decision and the whole process so far has been doable.  Surgery to get the expanders put in was painless (you get a lidocaine pump that lasts 5 days) and I took no pain medications.  My expanders look pretty good too.  They were always even and in the "right" place so I wasn't that self concious about how they appeared to others.    I have 3 local gals that I get together with that all had the same surgery with my PS and they are very happy with results!

If you have any other questions, feel free to email me off FB.

Hugs

Diane

ccbaby

Michelle....Happpy Birthday (belated) to you too! We are only a day apart, cool!

Buddy...the second stage is where they will contour out my buttocks (lipo) to even things out and make any other revisions as needed. They will also smooth out my scar lines and I will get a nipple.

Dayla...I have been worried about Aunt Flo coming back...it hasn't happened yet, but I am sure it will soon. That was the only good thing about this whole ordeal.  Are you spotty or does she come back full force?

buddy1

cc  Thats gonna look great when its done

Alyad

Christy, at first I thought it was just spotty, now its full force- faster than I've ever had I think. I'm telling myself its cause its been so long, like it was built up more? I hope it calms down long term. I'm kinda glad it happened before the hike so I know- I was going to be prepared of course but hopefully I'll get another cycle in before I go - I was like clockwork before. I think I read somewhere 9 months after chemo is sort of an "average" amount of time for it to come back if its going to- but it depends on so many factors- your age  etc.It's just over 6 months since my last chemo. I never really had any doubt mine would return, it was just a matter of when. 

Do you go back to NOLA for the revision too? When do you do that?

WLL

Does anyone know what a breast cancer marker of 18 means????

didle20Diane

WLL that is a good thing......I think under 30 is where they want us.  I was 91 last fall and haven't been retested.....I was having some kidney issues with the ibandronate I am on so they think that is what spiked by markers.  I WAS A WRECK but I have no other symptoms so I am going to put it behind me.  I don't even want to be retested.  The test is not as accurate as doctors would like it to be.  I know some onc's don't test their patients.

sakura73

Happy birthday to the birthday girls!

Diane  hope your surgery today goes well.

Dayla and others, so sorry to read about LE issues. I have had intermittant aches and heaviness in my surgery arm but so far the physio says it is not LE but just the slow process of recovery.

Francine - I had a compression sleeve fitted back in May or so when I flew to Sydney - it was fine then, but was a bit tighter on my more recent flights to Sydney and Singapore because I have gained a little weight, grrr. In fact I took it off half way to Singapore because I was convinced it was doing more harm than good ( a badly fitted sleeve is worse than none) and did not wear it on the way back. The physio said the jury is still out on whether the sleeve helps when flying.I did do lots of exercises while seated in the plane to keep the lymph flowing.

Dayla  again - Yay for Auntie Flo!! Alas, she is yet to pay me a visit. I booked my followup MRI, mammogram etc for early February and had  to say "I don't have a cycle" when they asked me when in my cycle the date they gave me would fall. I really want her back, though I too also wish I had my Brazilian. Leg hair is also starting to flourish in a  very annoying way.

It's a scorcher here today - 43 degrees celsius (that's 109 degrees fahanheit!) and I am sticking indoors in the new house. D and I moved in last week and there are still lots of boxes around. IT's a cute little house and it is so lovely not to have to pack a bag when I want to spend the night with him. I keep pinching myself.

WLL

Thanks DIDLE, she said  the results were between 1 and 50, I didnt ask what kind of test it was, all she told me was a breast cancer marker test. Hope everyone had a great Christmas and New years. THIS IS GOING TO BE A GREAT YEAR!!!!!!

crusader1

Hi All,

Diane..Too bad about your latest problem. It does seem like all will turn out well.

Beth..I now have a TE in my right breast. One more fill and it should be all ready  for the implant. My fills were not painless at all. MY PS only put 60 cc's each time. He was in no hurry as I was not. The implant surgery was not painful at all. I never took painkillers at all. You can also PM me if you want any specifics.

Ladies. I looked a little into Lymphedemia. I believe it occurs more frequently in those women who had their lymph nodes removed. I only had a SNB which I believe decreases your odds of getting it. I will indeed ask my onco when I go back. I will also ask about that marker number. Never heard about that.

I did copy this clip from our board. A relatively new technique of lymph node dissection, called sentinel node dissection, aims to identify and remove only the underarm lymph nodes most likely to contain cancer cells that could have spread beyond the breast. This technique may lower the risk of developing lymphedema because fewer lymph nodes are removed, leaving more lymph fluid drainage channels in tact.

Dayla.Congrats on Auntie Flo.  I  am still in  search   of my eyebrows and my eyelashes. I had my eyebrows waxed in the summer and they still are perfect. I don't believe they are growing anymore. I use eyebrow pencil. Dayla..I do believe that you probably had more than one lymph node removed as if one has one bad node they remove them all.

Michelle..Funny story about your bathing suit.

Rachel..We are all so happy that you and Damien are doing so well. Wow that is so hot ..The temps in where you live..LOL

Ladies..I will speak with Beth about more planning of our NY reunion. So great to hear that so many are interested.

Puerto Rico was fun..WE did not have that much sun but in 80 degree weather it really does not matter. Nice treat after a long year.

Hugs to all.

Francine

Dawnmrn1

Hi Ladies!  Lymphedema comes from a compromised lymphatic system, from dissection, biopsy and radiation.  The lymph system takes away our bodies toxins, and if you have had surgery or radiation you are at risk!!! Which we all are that is why you have to be careful about any arm or hand strains or infections.  I carry neosporin with me at all times, I am at risk as I have had a bilateral mastectomy.No one has told me about compression sleeves, I just drink alot of water and move my arms even when flying I've flown twice with no symptoms, and I have had a complete lymph node dissection on my left side. I am careful about preventing infection, but I think moving around is the best prevention.  good Luck to all!! Dawn

kim40

Crap!  Looks like I will not be able to make NYC!!!! My son has a Provincial Bowling Tournament that weekend!!  If he wins, he will get to go to Nationals!!!  I'm sooooo bummed out about this.  I so was looking forward to going and meeting everyone......

crusader1

Kim.

You will be missed here in NYC.

Hugs,

Francine

kim40

I'm so disappointed!!! Every other year, the tournament has always been held on Easter Weekend and of course, this year, they decide to change it.  UGHHHHH!!!!!

ccbaby

Dayla...Yes, I am going back for stage 2 to NOLA. I am scheduled for March 10. I can't wait! My husband will have his vacation paid for this time, unlike in December, he had already used back in February when I had my mastectomy. So, we are going to spend a little more time there before-hand to enjoy the city.

pickle

Michelle: Love your bathing suit story. I have been shopping for bathing suits because I am going to Puinta Cana on the 28th. I never liked shopping for swimsuits before and now I dislike it even more.I bought a silicone swimform to insert ...now I just need to find the right suit. Not a lot to choose from in Mastectomy suits.

Rachel: Glad to hear all is well with you. I agree...I miss the brazillian...lol and the leg hair is back in full force. At least it's not curly like the hair on my head!

Regarding LE, my cancer center here told me that even though I only had 3 nodes removed there is still a chance of LE although the chance is much higher for someone who had a total auxillary dissection. I will wear a sleev on the plane. They said to be really careful about cuts, hangnails etc. That can flare up LE. They also said to be careful where you get a manicure....sterilization is key and they advise against getting fake nails.Apparently LE can show up months or years later so I guess we will always have to be somewhat careful.

KIm: That's exciting about your son. Does he bowl at the superbowl in Sackville? That is too bad that you will miss out on NYC.I was looking forward to having a fellow Maritimer there.

Francine: I am so glad you had a good time in Puerto Rico. A well deservd getaway!

Let's get planning....yeah I am so excited. My DH is so happy that I am going. Do you want to PM me your phone number and let me know when is the best time to call and we can chat.

I am going for a CT scan on my spine on Wednesday morning and will meet the PS Wednesday afternoon. Thanks to everyone for giving your opinions on recon.

Have a great Monday everyone

Hugs

Beth P

nasharayne

On the LE issue...I had 5 nodes removed with the SNB and I fly every week for work and don't use a sleeve.  My onc knows how much I travel and he didn't say I should use one.

 Francine I will be in Puerto Rico over Valentine's weekend.  Any suggestions on places we should go?

crusader1

Hi ladies,

So we have many thoughts on wearing the sleeve. I guess different doctors have various opinions. I will check with my onco next month.Maybe there is no definite answer. Just more cautious doctors.

Nasharayne ..I will PM you with info.Beth..You too.

Christy. what is step two?

Hugs,

Francine

crusader1

Ladies,

I read what Deb wrote about the Appalachian trail on TV and came across this video many of you will enjoy seeing .Dayla will be happy that we will begin to learn about it. Appalachian Trail | Video | | National Geographic Channel

Hugs,

Francine

Binney4

Hi, all,

Just wanted to add a thought to this "To Sleeve or Not to Sleeve" discussion. I developed lymphedema on a flight to a small town in Alaska, which made for a mighty unhappy trip. It's a controversial subject, and our doctors often offer little knowledgeable guidance. A couple of precautions:

If you get compression garments, make sure they fit well. Poorly fitting garments can cause more problems than they solve. Here's a page to give you an idea of how they ought to fit/feel. Try them out a couple of times BEFORE you need them on a flight.
http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm

Always wear hand protection (a compression glove or gauntlet -- which is a fingerless glove) when you wear a sleeve so any swelling does not get trapped in your hand.

If you decide not to wear compression garments for travel (or exercise, or any strenuous or unusual activity) you might want to get them anyway, and carry them with you in your carry-on luggage. That way, if you develop problems you have a way to deal with it, even in a strange town far away from your medical team.

When you travel, use wheeled luggage (and be careful about hefting suitcases around the house as you pack, into overhead bins, and off luggage carousels). Stay VERY well hydrated -- it dilutes the lymph fluid and helps keep it flowing. Stop often to take a few deep abdominal breaths -- it stimulates the largest, central lymph vessel in our bodies. Do frequent arm stretches and gentle exercises -- with arm as high as is comfortable over your head, open and close your fist slowly several times; pretend you're a cat and "claw" at the air; extend your arms in front of you and bend at the elbow to touch your nose.

More lymphedema risk reduction ideas here:
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

Bon voyage, and no "swell" trips ever!
Binney

ccbaby

Francine...Stage 2 is where they will do any revisions needed like smooth out my scar lines, contour (lipo) my backside to match the opposite side, give me a nipple and give me an implant in the healthy breast for symmetry.

didle20Diane

Hi everyone.....I had my surgery yesterday and knew before I went under that I was going to be getting another tissue expander....SIGH...I figured that was going to happen.  My L side had retracted all the way back to where it was when I initially got the expander put in in October.  I still have my exchange surgery 2/19 which is something I am looking forward to.

Beth, good luck on your scan for your spine.  Are you going to the Dominion Republic?  Wow that sounds fun, too!

Nasharayne....have a great time in Puerto Rico!

Francine and Beth....thanks for coordinated the NYC visit.  I am so looking forward to meeting you all  

Hugs

Diane

ChrisC433

Anyone here on Aromasin?  I was on Arimidex and had severe joint pain.  I was switched to Aromasin.  I have some joint stiffness, but manageable.  I was wondering if it slows hair growth?  I've read about thinning, but wasn't sure effects on growth rate.  I've noticed I only need to shave hair on my legs every 1 1/2 weeks, where it used to be every other day!  Hair on my head seems slow, but was never growing fast enough for me!!

Sounds like everyone is doing well.  Quick healing to all those undergoing their reconstruction surgeries.  Anyone cruising this spring???Trying to decide where to go!!

I have a bone scan on Monday...some pain in my right hip, but I think it is arthritis...doc wants a baseline bone scan anyway!

Take care,

Chris

crusader1

Diane, I guess you are trying to compete with me and TE's?( only kidding) I am on number three and it is working out fine. I hope your new one does the trick. How are you feeling? As usual your attitude is great. Great to hear that you also plan on coming to NYC. The more the merrier.

Chris..good luck with your scan. Have fun planning your cruise. To me the best part is being on the ship. I believe my family will be taking one in the summer to celebrate my husbands birthday. I am on Arimidex and doing fun. Hope the aromasin does the trick.

Christy- thks for the info

Binney- great info on Lymphedemia. I am sure we are all happy with your contribution to this topic.

Ladies. Beth and I are about to start working out more specifics on the NYC gathering .So great to see so many interested.

Hugs,

Francine

buddy1

Good mornming girls.  I dont wear my sleeves as often as I should.  There are lots of thing that I can't do becuase of pain.  Yesterday I tryed to vacuum and it was terrible.  from my hand up under my arm and part of chest.

ccbaby

Buddy...I don't wear my sleeve like I should either. Whenever my arm feels achy, I do the manual massage and exercises the therapist taught me and it feels much better.

pickle

Buddy: I didn't realize how awful and limiting LE can be until you gals started posting about it. I see you only had 2 nodes removed and still got it. Get your sleeve on and delegate the vaccuuming...lol. I still don't vacuum and have a hard time making a bed due to back issues. There are days when I could do it but I delegeted it to DH a long time ago so why change a good thing....lol

Diane: How are you feeling? Hope you are recovering well.

Chris: Good luck with your scan

Binney: Great info. Thanks

Ladies: I just got off the phone with Francine. What a delight to talk to her and I love her NY accent! We chatted about the trip to NYC so Francine will post about it tomorrow. I was so thrilled to talk to her (it's the first time I've spoken live to one of our March Warriors) and now I am even more excited to meet everyone in person.

Have a wonderful Wednesday

Beth P

buddy1

Thanks pickle  you are right.  I really shouldnt even attempt it.  I did have 22 nodes out on my right.  2 of which had cancer.  The left side I had 3 removed and they were all clean.