June 2011 A/C & T Groupies Unite!

kks_rd

Michelle, you and I might be in the same rads group!  I think I will be a November girl, but won't know until my follow-up with the surgeon a week from tomorrow.  Did you go on your vacation yet??  What you said about waiting for recon makes so much sense.  It's been a long road for you, no doubt.....

Southamptonmom

Michelle, what did they decide to do for radiation? Last thing I remember, you weren't sure if they were doing it because you had rads before? Good luck getting the TEs out. You should take a ride down here and visit my doc at HUP. He pioneered the DIEP. My MO, SO, and PS all recommended him or a doc in NYC. If I have it done, I'm waiting until August/September.

Kat, I'm November 7th. By the time I got my office cleaned, I was itchy, dirty, sneezing, and shaky tired. It hasn't been touched (except by an 11 and 12 year olds) since last MAY!!! The rest of the bedrooms are next, then pull out the Christmas wrap/boxes/bows, and I'm done.

pebee

Hi Kat - congrats on the surgery.  I am really glad that you do not have to go back through chemo.

My Cat Scan went well - everything looks fine.  They now think that the liver enzymes is a reaction to chemo so they will be drawing blood alot.  I have two more taxols and then I am done, then radiation.

Michelle - I know how you feel.  I feel like I lost a year. My MIL is coming up to see us (3 hour drive) as my husband hasn't been home since January....... 

LuvRVing

Yes, we are on vacation in Delray Beach, FL. It rained Monday through Wednesday, but the weather is now glorious. This picture is the view from our hotel suite. The lovely desk clerk gave us an awesome upgrade when she learned I had been fighting BC for 16 months.

As for radiation, I will have my chest wall, supra-clavicle nodes and internal mammary nodes radiated.  Dr. Harris mentioned electron beam technology which allows him to pinpoint the radiation and avoid damage to my heart and lungs, but is why he wanted the TEs removed. He is not radiating the axilla area because those nodes were removed.

My DIEP surgeon is also a Harvard professor and teaches DIEP microsurgery, so I think I'll stick with her!

Did I mentioned I was approved for SSDI?  On Monday I saw this unusual deposit in our checking account, compliments of the US Social Security Office.  They went back a whole year, which was six months more than I had requested.  I am now officially retired, as I am 61 1/2.  I am not sure of the precise date because I am guessing the notification is in the mail and we are gone.  But it would appear that I will qualify for Medicare in 12 months.  That's a huge relief for my DH, who will be able to retire at 63 1/2 now - we can carry COBRA for him for 18 months.   If you have a stage 3b diagnosis, you should check into it.  Non-resectable nodes (like my mammary nodes) and extension to the skin are almost automatic qualifiers.  When you add my age to the equation, I guess it was an easy decision.  I applied the first week of August, so it took about 10 weeks.

kks_rd

Wow Michelle!  Great view - and good news about the approval too!

And I LOVE your profile pic!  You go girl!!!!

tldrose

Official LAST CHEMO today!!! Was awesome - had our own "chemo grad" party with food and friends! Made a t-shirt with chemo grad 2011 on it and all my nurses/staff and friends signed it.

LuvRVing - congrats on ALL your great news! You look wonderful!

Hope everyone else here is doin okay - hang in there!!

LuvRVing

Yippee, tldrose!!!  Congrats on that last chemo and making it a party!  

My hair is growing pretty fast, I've got about 1/2" of full coverage.  Eyebrows are starting to show up but there are no signs of eyelashes. 

tldrose

Thanks LuvRVing..I will try to post a few pics, but couldnt figure it out on here..My eyelashes have almost completely fallen out, but I still have most of my eyebrows, so I guess that's ok..My hair started growing in peach fuzz after my first Taxol infusion, but I just had my hair sylist shave my head, so it will all start coming back in nicer and faster I hope! Hope everyone has a good weekend, by side effects have already started today, and I need to go get a Neulasta shot - which I am not happy about, but I know it will help my immunity and what the heck - Im done with chemo! Better to be safe about it!

julee_stayin_strong

Luv Rving- My doctor said from the beginning that i would not have the expanders put in until after radiation. So that the skin is completely healed. Sorry about another surgery. 

kks_rd

Well girls, I hope you will excuse me while I get a 30-second whine out:

I am sick of looking like a cancer patient!

I am stared at everywhere I go... three of my fingernails have broken off more than halfway down (to say nothing of the toes)... my BF is "afraid" to look at my incisions... I miss my hair/eyelashes/eyebrows.  There is no dignity in this whatsoever and I want to feel like something closer to normal.

You get it, I know.  And I feel terrible about saying anything less than encouraging.  Fact is many of my coping mechanisms (like pounding it out at the gym) are unavailable to me right now.  So please know I appreciate the opportunity to vent a wee bit. 

twistedsteel

Vent, vent, vent, Kat!

Beaglesgirl

You're right Kat. We do understand! Somedays when I get a little bit of energy and I work on my closet or makeup drawer... cleaning them out or sorting... preparing for better days. It helps me take the focus off of what I cant control and put it back on something I can. It seems to help. (((hugs)))

LuvRVing

Julee - there was never any question about my having immediate reconstruction.  I think there are some regional differences (midwest vs. Boston area) in treatment options.  Had I done a ton of research about radiation before I had my BMX with TEs, I might have brought it up.  But everything has happened so fast this year that I've been dealing with things, one step at a time.  Tonight I need to see if I can find something about this surgery as I've not even looked at it yet.  I'm going by what I was told...that it is the easiest of all the surgeries involved in reconstruction. 

cider8

Hi everyone.   Tomorrow I am 6 weeks out from AC/T.  I've been on Tamoxifen for 4 weeks.  I have about 6 brow hairs left and 6 eyelashes.  I think I can be Uncle Fester for Halloween with very little costume!  I do see some shadowing on my brow area, so they should show up soon.  My hair is maybe 1/2 inch long.  The ends are colorless (or grey) and very wispy.  The roots are dark (I'm naturally dark auburn/brunette).  My skin is dry dry dry.  I went from very oily skin to this very dry skin.  I'm having trouble adjusting my routine, as I quite liked not needing to use lotion ever.  All my nails are just fine.  No Dr visits until Dec.  Then I will have my 3 month follow up appt with my MO and also my revision surgery.  My strength is increasing, but nowhere near 'normal.'  I started with a personal trainer today.  She's worked with chemo patients before.  

Congrats to those who finished chemo!  And to those still on it: keep it up one day at a time. 

kks_rd

Along the lines of Halloween costumes... I decided to get a blonde wig with pink streaks, found it for $10 and got some hot pink beads too... just for fun.

Thanks to those who replied to my last post.  I am doing MUCH better these days.  Waiting on my final path report when I see my BS on Friday.......

justme1

Neuropathy is getting to me . I am gaining my strength back but my feet oh my feet . I have swelling in them around the inside of my heal and under my toes and my toes . Is this normal? I am calling my onc . today to see .If i could get the swelling down i could deal with the other.

Southamptonmom

Justme, I had the same problem, except it was in my hands and eyelids. My MO suggesting soaking my hands in sliced ginger root that has been boiled, and cooled to the warmest temperature you can handle (you may have to have someone else feel it. I've burned my hands on dishwasher glasses!), then soak them for 10 minutes. You can re-boil the same ginger root throughout the day. It completely took the swelling down. My entire body is angry, and I can't stand that I'm going to have surgery in this condition!

LuvRVing

So sorry to hear you gals are having trouble with neuropathy, especially four weeks PFC.  I thought we were out of the woods by now.  Hope I didn't go off the supplements too soon,

Had my TEs removed today and the surgery went well.  But get this, I was told by my first PS that he gave me 375 cc expanders, and the surgical op report stated the size of the expanders.  My new PS said he took out 600 cc expanders.  Those suckers were huge, and apparently they had been folded up.  It took longer for the surgery and my DH was getting worried.  Can you imagine...I am 5'2" and weigh 122.  If those expanders had been filled up, I would have been a freak!  I am really tired of screw-ups in my care.  I mean, did the first PS actually lie?  And it's no wonder they were so uncomfortable. 

 I guess it's good that I am back here and being treated by Dana Farber and Brigham & Women's. 

kks_rd

Wow Michelle!  I don't remember what cup sizes are associated with what volume of cc's but I know 600 is a lot.  So glad the surgery went well - are you home already?  Hope you heal up nicely. 

And I'm curious, did you ever figure out what was up with the large SSDI deposit?

I got tons of chemo-related questions tonight from a friend of mine whose uncle's GF had her first round two weeks ago.  It's hard to remember all the details of what happened when!  Early June feels like a strangely distant memory (in some ways).....

LuvRVing

Kat - on me, I think fully expanded 600cc's would give me DDD cups!  Now that is quite a vision, especially since my expectation was a nice B cup!  I left the hospital 45 minutes after I woke up from surgery, we stopped for dinner at 4 p.m. on the way home and we were home a little after 5.  No pain at all. DH picked up my meds - antibiotics and Tylenol with Codeine, but I didn't need the pain meds.  I didn't even take a regular Tylenol, so that is a good sign.  I feel fine this morning.

And yes, the mail was waiting for me when we got home from Florida.  I was approved for SSDI, and they went back to October 2010.  So that is so freaking awesome!  My DH will be able to retire at 63 1/2 because we can cover COBRA for him for those 18 months until he qualifies for Medicare.  I will qualify next October (there is a 24 month waiting period from the time you are determined to be disabled).  And I get the full retirement benefit, as if I had retired at 66.  It really is a beautiful thing!

For anyone with a 3b diagnosis, i recommend applying. There are specific situations where SSDI is almost automatic...cancer extending to the skin and non-resectable tumors (like the cancerous mammary nodes) are on the list, along with Stage IV. And my age (61) probably factored in there. I was impressed with the quick decision (10 weeks) and the speed of the deposit once the determination was made. For once, a government agency acted very efficiently.

pebee

Oh good for you Michelle.

I am off today for round 3 of 4 of the chemo.  I too have alot of neuropathy and I am waiting to see what they say.  THere are also meds that you can take - and I am just so tired of the side effects. 

LuvRVing

By the way, if anyone wants to learn more about SSDI and who may qualify, there is a great discussion thread under the Insurance and Other Financial Matters:

http://community.breastcancer.org/forum/113/topic/770569?page=8#idx_219

It was started by one of the husbands who happens to be an attorney whose practice is involved in getting SS benefits for people who may have been denied or who would rather use an attorney.  He has been responding to individual's questions and the information is invaluable.  I would never have thought to apply if I hadn't read this discussion. 

I found the online application process to be relatively easy.  If you decide to apply, be sure to have a list of ALL your doctors, hospitals, etc. ready at your fingertips.  The more information you provide, the quicker the process. 

pebee

HI Everyone - now, I am done.  My liver enzymes were elevated after the last chemo, so I am finished.  As I had 4 rounds of TC before surgery - I have had my taxol-taxotare chemo coverage.

Next up - radiation.  Is there a good radiation thread going?

kks_rd

Congrats Pebee!!!  Done is done no matter how you arrived there. 

I've been following the September rads thread to get a feel for it.  I will probably join a November rads thread... will see after the f/u with my BS tommorrow...

Ralsper

Michelle- Sorry, I still do not understand why your TE was removed. My PS knew that I was going to have radiation and he place my TE under my chest muscle to protect it (also attached some "cadaver skin") and make sure that will not interfere at all with radiation.

pebee

Ralston - she is on her second diagnosis and treatment .... She was intially diagnosed, had surgery, had the TE in and then before she could start reconstruction, they found more cancer.  So, she went through chemo for the second time with her TE in.  Now, she needs them out for round two of radiation....

Another example is me - I was diagnosed, had 4 rounds of TC chemo (joined and participated in that thread) had surgery, they found more problems, then back for four rounds of AC and now 2 of taxol (this thread).  My radiation was pushed back.....

so sometimes you make decisions based upon what you know, then it comes back to haunt you.   

LuvRVing

Pebee - that's almost right.  I had a lumpectomy followed by Mammosite radiation (brachytherapy) last July 2010.  I was stage 1 and I did not do chemo.  I was on Femara because I was slightly hormone positive.    In March they found cancer in the area of my biopsy and lumpectomy scars which they now think was trapped in the hematomas from my biopsy.  So I had the BMX with immediate reconstruction - the tissue expanders were inserted at that time (April 2011). None of my doctors in Kansas cautioned me about having immediate reconstruction.  And they all knew I would need radiation. My first radiation oncologist in NH made no mention of having my TEs removed.  .What he said was that I had about a 20% chance of having heart damage and a 30% chance of having my thyroid destroyed with radiation.  So I consulted with the head of Radiation Oncology at Dana Farber and he said that he could do radiation without causing the heart and thyroid damage.  But I would have to have the left TE removed.  He will use electron beam technology that can be aimed away from my heart.  But the TE was "in the way" as he put it.  So I decided that if one had to go, they both could go as I detested them. 

My guess is that he is wanted the most optimal situation for radiation.  And all he does is treat breast cancer, he's one of the best in the country, and I have complete trust in him. 

I am very short-waisted and it causes some interesting challenges. Today I went to a specialty shop to buy breast prostheses as I am now totally boobless. Well, the woman could not find a model that worked with my frame. They were all just too bulky, so I ended up with the "chicken cutlet" bra inserts. They are seriously less expensive than the real thing, but at least they fit me. I suspect that my anatomy is why the RO wanted the TE removed.

I was reading up a bit on radiation protocol and I learned that MD Anderson insists that TEs be completely deflated before beginning radiation. I learned that the TEs can cause the geometry to be "off". Think of a water balloon and how the liquid shifts around. So they do the radiation measurements today, but the saline could shift and the measurements could be "off" tomorrow. Since my TEs were only partially filled to begin with, there was a bigger risk of problems. And the RO said he wanted my skin right up against the chest wall. 

pebee

Wow.... That sounds like fun - I am just starting to look at radiation, so I need to keep that in mind.  I am left too - I don't want them to hit the heart, lungs, or my thyroid.

Michelle - somewhere on this forum is a "make your own Foob" thread.  You may want to check it out - it sounds like a little fabric, a little stuffing, and you can have a temporary fix for a few months.....

Beaglesgirl

I have my TEs in, the only thing they wanted (both the PS and RO) is that I be fully expanded at the time of my first rads tx. 

716bobbiejo

Hi, Ladies!  Haven't been on in awhile because I'm attempting to get my life back to normal.  I'm quickly discovering that the old normal no longer exists, nor will it ever.  I guess my next step is to come to terms with the new normal.  

Has anyone ever heard of neuropathy rearing its ugly head PFC?  My last treatment was 9/8, & starting about a week ago, I'm having pretty bad numbness & tingling in my right arm & fingers.  It keeps me up at night because I can't sleep on my left side (port side), & now can't sleep on the right.  I try sleeping on my back, but the tingling still gets me in that position.  I'm having trouble typing this, & I just wrote out a thank you & found that handwriting was difficult as well.  My other thought is maybe I have a pinched nerve in my neck & should see my chiropractor (although I'm cautious of doing so with my port still in place).  Thoughts, ladies???  Thanks!