September 2013 Chemo Group

70charger, 

Big {{{{HUG}}}} and prayers going your way. 

My RO called today. Plan A didn't work out because they couldn't find angles that would hit where needed without over-saturating my lung.  So, they are moving to a more complicated Plan B, which involves IMRT (intensity modulated radiation therapy). That will allow them to hit what needs to be hit and not take out my lung.  Simulation now on Monday, with first dose Monday too... If simulation goes well. 

http://www.mayoclinic.org/tests-procedures/intensity-modulated-radiation-therapy/basics/definition/prc-20013330

70charger

 hoping tests results are ok for your hubby!    I look at my husband (of over 40 years) every day & know how lucky I am for his support & love. But am also realistic & thank my lucky stars other than being 62 with the usual aches he is healthy, working and we have health insurance! It is just such a scary thing, specially when we are involved in our own struggle & something like this comes up. ALL THE BEST TO YOU BOTH!

Positive thoughts headed your way, 70charger.  And congratulations, KnightZoo.  That's how you show cancer who's boss!  VintageGal, congrats on being done with taxol!

Had my MRI-guided biopsy yesterday.  Started with a scheduling glitch (someone cancelled my appointment by accident), and I had to wait 4 hours until they could get me in.  I was supposed to have both new areas of concern biopsied, but when they looked for the one on the left, they could no longer see it.  They think it was a cyst that spontaneously disappeared.  So, no biopsy on the left.  They did still see the thing on the right and managed to hit it on the first try thankfully.  I'm not sure why it will take so long for the path results, but they said I probably won't know until Friday.  When I had my first MRI biopsy last September (at a different hospital) I think I got the results the next day.  Let the waiting begin.  Oh yeah, I almost forgot, when they did the mammo to confirm the placement of the biopsy clip, they couldn't find it!  They took a bunch of pictures from a bunch of different angles, and it was nowhere to be found.  How on earth is that possible?  I keep imagining it floating around somewhere near my bellybutton poised to cause some unknown trouble.

I was really grateful yesterday for a wonderful nurse during the procedure.  Every time they would pull me out of the machine, she would come in and hold my hands and whisper reassurances to me.  When my hands were cold and falling asleep, she rubbed them to warm them up and get the circulation going.  She was so tender and caring, I started crying right there on the table.  It felt so motherly, and I lost my mom not quite two years ago, so my tear ducts opened wide.  It's so nice to run into such kind people on this journey.  There is so much good inside people (like you all for example!), and I'm incredibly grateful for it.

Audra - If your MO is not on board with your concerns, then definitely find a new one.  I'm not very knowledgeable about the whole hormone/tamoxifen thing... I just know I was premenopausal before chemo so I'll be on Tamox, and I will have my ovaries out because of BRCA.  If I wasn't BRCA+ I'm not sure what they would recommend.  The MO I saw in Dallas was Dr. Froelich and my hubby and I both really, really liked him.  He's at the Simmons Cancer Center at UT Southwestern - same place as my BS and PS.  I would have loved to have had him in charge of my treatment, but it wasn't feasible to do chemo & rads there since it's 3 hours away.  Thus I ended up with an MO here that I'm not crazy about.

Betterday - {{hugs}}  I have had so many people make me cry with their kindness.  After I had photos taken at my first plastic surgeon appointment, the lady who took the pictures took my hand and hubby's hand and asked if she could pray for me.  OMG I lost it.  LOL   The kindness and compassion of some people is amazing.  I'm so glad you had a nurse like that, but OMG having to wait four hours?!??!?  That's horrible!!!  I think they "lost" one of my biopsy clips, too.  They couldn't see it on MRI, but the pathology report from my BMX mentioned it.  So I guess it just didn't show up on imaging.  I'm glad one of your worries disappeared.  Stupid cysts.  I will pray for good path results on the biopsy.  I had to wait several days for my results from my original biopsy, too, and waiting is the worst!

Saw my plastic surgeon two weeks ago and he wanted me to email pics of my incision this week so he can see how I'm healing. He just emailed me back and said "good healing indeed... let's start expanding soon". Soon as in TOMORROW! Yikes. So now I'm scrambling to make this all work with my kids and school and my hubby and work, because it's a 3 hour drive each way to my PS office. And the only appointment they had was 10am. I'm excited to get started, though... the sooner we get these expanders filled the sooner I can start rads and be DONE! I think they'll only do 50 in each.... does anyone know if that's all they ever do at a time? If so it will take forever! Or do they just start slow? I only have 100 in each one now.

VintageGal,
I'll be on Herceptin through August or September too.  So far, I haven't have many side effects from just the Herception.  You?

I think SpecialK or KBee posted a great radiation cream treatment recipe recently.  Since I'm starting radiation on Monday, I went searching for the ingredients.  Thought I would share ...

• Aloe Vera 100% Gel (Fruit of the Earth, 12 ounce bottle = $3.97), Walgreens, Walmart, Fred Meyers.

• Mia-Derm (4 ounce tube = $37.00), Hard to find!  Mail order or Medical Specialty pharmacy.

• Vitamin E Cream (Fauldings, 300 gram
  jar (10oz) = $7.69), Walgreens.

• Pure Emu Oil (4 ounce jar = $17.49), Walgreens.

• Aquaphor (3.5 ounce jar = $10.95), found at Walgreens, Walmart, Fred Meyers

I also purchased some solarcaine spray with lidocaine. For the Mia-Derm, there was only one place in my regional area that carried it in stock.  Fortunately, they were only about 15 miles away.

If this works, it will be worth the $80 or so to keep my chest from overheating and burning badly.

Betterday-

THAT sounds great they couldn't find the one area!!  I'm praying the other is negative too!!  I have a lump in my breast that's been there for a couple of months, my Ps thinks it 's a suture...I've had it ultrasound-ed twice and they think it's nothing..but it's 1cm!!!  My BS and PS both said that after mastectomy and reconstruction you can have all sorts of lumps and bumps, from fat injected areas,sutures, to cysts...nice huh?

LHL-We live about 30 minutes from Dallas if you ever need to stay somewhere or have a pit stop...we are north west of Dallas...let me know...You are always welcome..

I tried to get another MO in Dallas that a friend recommended and he 'declined, not taking new patients'...this was after I sent my chart...so obviously NOT worth taking, hmph! 

I am trying to give my guy another chance, maybe I just don't like him because: everytime I have went there I have gotten poked a zillion times, or I got chemotherapy which made me feel like crap, or his nurse is a bi---otch!, or I just associate going there with cancer...

He has a great reputation and is very nice actually....maybe it's me...!!!!  I am type A, bossy, used to work as a nurse, very UN trusting...so maybe I will see how appointment goes next week and it might be OK...

I went to PT today to check arm that is swollen at back of armpit area...she says it's congested and measured my arms...my right (cancer side) is a little bit bigger at top - she said congestion...

she thinks it's from my port or surgery but not lymphedema...interesting...anyhow I am going there 3x/week and she is going to 'fix it'- so happy for that...also of note:

I cannot touch my chin to my chest anymore, my range of motion in arms is not perfect, my right shoulder is coming forward- she thinks muscles tight related to my port? - just weird observances that disturb me...

but what do I expect from sitting on couch for 3 months???  I guess that is to be expected...I did my exercises after surgery but when chemo started I sortof vegged out and didn't do them...

Hoping it will all work out.

kj- yep I had 4 removed...but she insisted it's not lymphedema...she is a lymphedema specialist and has a doctorate in P.T....she thinks it's just congested and said they shouldn't have put the port on my affected side...and that is causing 'congestion' too as the lymph nodes are trying to clear that - removed 2 days ago...we will see.. she is about 25-30 minutes away and I will be going 3x/week at 0600!!!!  She'd better be worth it!

It was interesting and worthwhile and I think she will help me a lot...and hoping she's right about not lymphedema...!!

All,

LHL and I were conspiring and thought it would be fun for us all to arrange a weekend in Vegas to celebrate our victories a year from the start of chemo.... So, how does the weekend of September 25-27, 2014 sound? 

Vegas comes to mind because the airfare and hotels are usually inexpensive and there is lots to do within walking distance. 

Who's interested?  And, if interested, are there any particular activities you would like us to plan as a group? 

KJ! Wow! Great idea! I might consider traveling to Vegas in September.  I've been wondering what kind of fun things I should plan for post-cancer 2014... and this is a good idea with an inspirational group of women! Flights are often cheap and go direct from Duluth to Vegas.  In the mean time, I will be thinking of you on Monday as you start rads!

Vintage Gal, Southern Girl, Knightzoo!   Congratulations on moving on' this week... with good results with chemo and surgery!

Art, Simple Life, 70s charger, and Better Day - - Hoping for good results as you wait for news! 

LHL and KBee.  Thinking of you as you recover from your surgery! Don't overdo it with this new snowstorm!  LHL - - hope the pain subsides and the PT helps! 

Mama.  I hope your hair grows in nice and thick!  And your friend sounds nice... even though its stressful to think ahead to how the relationship will progress with your new body!  As a fellow single person and single parent, I can understand some of how you feel!  Try to take it one day and a time and just enjoy his attention for now! 

Simple life - I laughed out loud about "F+$K Cancer Day" instead of World Cancer Day. You got that right!   Hope your thyroid issues really are "small potatoes"! 

Jos!  Way to go with the 5 miles!  I went back to my running group last night for the first time after chemo and ALND!!!! I RAN 3 miles!!!  My breath was labored and my best running buddy and I ran slowly.... but it was so good to be back with my running friends! 

Audra!  You'll get your energy back!  And I hope your PT helps too!

If I forgot anyone I'm sorry!  Remembering everybody is a good workout for the chemo brain! 

I went back to the Cancer Center today and got my port flushed.  After surgery in December I didn't want to get my port out because I was sick of doctor's appointments, but now I do!  I have a weird fear that some day I may need more chemo and I'll wish I still had it.... but I've got to change my thinking from being a cancer patient to being done with cancer! I think it will take a while.

Sept 25 is befoer swim season, so I am definitely in for Vegas.  Haven't checked with hubby yet, but he takes trips with the guys and I know he won't care.  I am ready to pack my bags and head out to celebrate.  I guess we have a few more hurdles to cross first, but it is on my calendar!  I have never been to Vegas, but there are direct flights from Des Moines, so it should be easy to get to.

KJ, Hope rads go well on Monday!

Betterday, Hope the other side turns out negative as well; glad the one side has disappeared from imaging.  Sorry about the waiting...uuuugh...the worst.  Glad you had such a compassionate nurse.

Audra, hope that energy returns soon.

LHL, I got 60 cc per fill.  I didn't know we shouldn't take advil; it's what I took each time.  Oops.  I needed it only a day or 2, and the pain was probably compounded by the Taxotere from chemo.  I hope the meeting with the LE specialist goes well.

Hello, ladies!

I need some ideas, experiences
or just plain old prayers.

Mom started post op chemo
in Sept. Had 4 circles of Cyclophosphamide (Cytoxan) and Xeloda, and was fine,
feeling really well. She had a bit of redness in her hands, and they were sensitive
to the cold, but nothing other that that. Actually, she had no symptoms at all –
no nausea, no nothing. She was doing yoga, and going for walks. It made her
feel positive.

Then she entered the
second part of her treatment – Taxotere. The first week after they administered
it, she was feeling poorly. The second week her legs started to give out, she
had trouble getting out of bed. The third week – almost complete paralysis from
the waist down. She has almost no reflexes, and motor skills are severely impaired
if not non-existent. Her Dexason doses were tripled, but there was no
improvement. Her next chemo has been postponed in order for her to ‘rest’, but
they want her back on it in a week. I don’t know…I don’t want them to stop her treatment,
but the accumulative aspect of Taxotere scares me.

The whole thing was so
rapid! And I know a lot of patients have sensory neuropathy, but she doesn’t
have any problem with pain, or even any major problem with numbness. It’s just
the motor neurons. But such fast decline! Also, for some reason, her blood
sugar is high. She never had high blood sugar before. She has been given meds
for it, but it sure isn’t helping with the whole neuropathy problem – we all
know hyperglycemia is a factor in these nerve degradations as well.

So basically, a very
active woman ended up in a wheelchair in a matter of 2 weeks! What.The.Hell?

And, can you hear me
panic? Because I totally am panicking. We live on the freaking second floor,
with no elevator!

knightzoo, Sorry you are in so much pain.  Let them know so they can adjust yur meds.  I hope it eases soon.

AlyonA, I would get a second opinion before any more Taxotere.  That sounds really scary!

Alyon, it sounds like it's for the best to hold off on chemo until things get sorted out with your mom.  Even if she can't get the last of it, the other infusions will have had a chance to kill cancer cells.  I hope your mom improves.  That's a scary reaction.  

Knightzoo, I was SO HAPPY when I read your post about your pCR!!!  Awesome!!!  Just keep taking those pain meds and think about that pCR.  Chemo was hard, but you got through it....you can get through this too.  The pain WILL go down with time.  Can you call the doc in the meantime and see if they can add to the pain meds?

Betterday, that nurse was so nice!  I'm really glad that she was there for you.  I'm also glad that one of the spots has gone away on it's own and they were able to get the other one of the first try.  I had to LOL at the thought of your marker floating down around your belly button!  They are really tiny markers so I don't think it would hurt your belly button....even if it could do such a thing.  Did you know they are shaped like the pink ribbons for bc?  I saw mine on a mammo several months ago.  It brought tears to my eyes just seeing the thoughtfulness of the little  ribbon marker in my breast.

My day at Vanderbilt was very long yesterday with three appointments, but the thyroid nodes are the same size they were in Sept. so they are stable.  The endocrinologist gave me a choice on the one node that came back with an "atypical, indeterminate" of either doing another biopsy or waiting a year and rechecking it since it hasn't grown.  The "old me" would have been scared and wanted to biopsy ASAP, then "new me" realizes everything is probably okay there and I have bigger fish to fry with triple negative BC.  I told her that I'll wait a year.   She assured me that waiting was a very reasonable approach to take.

I also met with the RO for the first time yesterday because I had some questions I wanted answers to before my surgery.  After talking with me, she had questions too and called my PS.  She hasn't gotten back to me yet, so I don't know how that conversation turned out.  My surgery is a week from today.  It will all get worked out before then, I'm sure.  I'm just glad that I thought to ask the RO the questions.

I love the idea of meeting up in Vegas!  It is the perfect place since it's relatively easy to fly to from most parts of the country.    The only thing that would stop me would be if hubby and I are out on a self-supported bicycle tour of the Pacific coast by then.  That's what we had been training for and planning on doing last year when I got diagnosed.  Thinking of getting back to that plan of a long bicycle tour has been a big motivator for me getting through treatment.  

Warm hugs and thoughts for you all!

Oooh, Vegas!  I love Vegas.  I won't confess how many times I have been there lest you form a bad impression of me. 

Unfortunately, I have a long trial scheduled to start a about a week later, so I don't think I would be able to go.  But if the schedule changes, I definitely would be interested.  Might be a last minute addition.  Great idea though.  It would be so nice to meet  you in person.

Knightzoo, I am so sorry to hear about the pain.  I hope they get it under control soon. LHL, be careful driving in the snow!  Simplelife, I had no idea the clips were shaped like ribbons.  I've never seen one.  Odd that there are three of these things in my body and until now I had no idea what they looked like.