Author Topic: Breast Cancer update  (Read 55648 times)

leapyrtwins

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Re: Breast Cancer update
« Reply #75 on: February 05, 2010, 11:47:55 pm »
Kathy -

you sound very upbeat and I am happy about that  ;D

I'm hot and cold on Will Ferrell, but I loved Blades of Glory and Talladega Nights.  Elf was very amusing also.

And I'd totally forgotten about Something about Mary until someone mentioned it.  I thought it was a hoot!  :D

If you can take Adam Sandler, his Best of SNL will have you falling on the floor laughing - especially the Hanukkah song. 

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Debbi

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Re: Breast Cancer update
« Reply #76 on: February 09, 2010, 01:20:05 pm »
And how about "Arthur" with Dudley Moore - one of my all time faves.  Jim, totally agree w/you about Casablanca - add Dr. Zhivago to that list, too. 

Kathy, don't you love Netflix?  A friend gave me a 3-month subscription when I had my An removed and I've been hooked every since.  We even got a blu-ray just so we could download streaming movies (which are totally free w/your Netflix subscription!)  We just watched Mr. Holland's Opus (another favorite) this weekend on streaming.  Hope you continue to heal and feel better.

BTW, a good friend did get her insurance to pay for two wigs when she was having chemo, so keep after them on that.

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

saralynn143

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Re: Breast Cancer update
« Reply #77 on: February 09, 2010, 01:37:49 pm »
The Truth About Cats & Dogs and Young Frankenstein are two more favorites.

I did not know you could stream movies with NetFlix. My husband just got a Blu-ray player; that's good to know.

One of my friends got a wig when she was undergoing breast cancer treatment, but she only wore it to church. She thought it was too hot. But another woman I know had two wigs in styles extremely different from her regular hair - one long and red and the other dark and spiky. I think she enjoyed the reactions she got.

Sara

MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

Kathy M

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Re: Breast Cancer update
« Reply #78 on: February 14, 2010, 02:16:39 pm »
HI All!

Well, last Thursday was a very long but cloud-lifting day for us.  We had 4 appts so we were in Columbus for a long time and it started with a wig fitting.   The first step is looking thru catalogs to find the style that you want, then select the hair color.  I picked out several styles that are close to how I used to wear my hair (pre AN surgeries), but of course, none of them come in my color which is black with some gray starting to come in.  The boutique carries many in stock and luckily, most of mine were there to try on, but none of my picks had a hair color remotely close to what will be needed for me.  So, the first wig came out of the box....My daughter and I had the biggest laugh when this very nice woman put it on my head!  She flopped a mass of white hair on my head and before she tossled it to get it into the style it was intended, I looked like Martha Washington!!  That was a great start to the day.  We finally ended up selecting 3 possibles, so we go back next week to narrow it down  -  she was kind enough to order them in the hair color I wanted so we can better tell what I should get.

Physical therapy was next and I now know what exercises to do to regain full motion in my arm while minimizing a start of lymphedema.  I can start the exercises tomorrow and I can't wait!

3rd appt was fabulous - got the last of the 3 drain tubes removed!!  Yay!!!

Last but not least was my first visit to the oncologist - we were with her and her nurse practioner for 2 hours, and I loved them both.  My husband and daughter were there with me, too, so we all heard about the journey ahead.  Here's the plan:

Chemo begins on March 4.  I will have infusions every 2 weeks.  The first 2 months will be a combo of drugs that does have the nausea/vomiting potential side effect (and hair loss), but with anti nausea drugs, they said I should do just fine.  (fingers crossed...I hate to puke!)  Hair loss will be within the first 2 weeks, so the length of anticipation time will be small.  My neighbor across the street is a barber and is ready to lend a hand when I say the word (he knows the drill because his wife is battling ovarian and uterine cancer).  The last two months of chemo will be a different drug that does not cause nausea/vomiting - and it is possible that hair can start to come back during this time.  I will have to give myself injections every 2 weeks throughout treatment that will spur the development of new white blood cells. 

Only about 3% of their patients have to delay the frequency of treatments due to side effects, so that's a pretty good track record. 

Then, once chemo is over, I'll start radiation.  I didn't ask how many treatments - I figured I would cross that boat when we get a bit closer.

Because of the advanced stage and lymph node involvement, there is a higher risk that the cancer is elsewhere, too.  But, it's not a guarantee.  And, if it is, the treatment plan will be exactly the same because is tailored for my specific type of cancer...lobular breast cancer, estrogen/progesterone receptor positive.  If, later, we find that the cancer has spread, we'll cross that road and deal with it accordingly.  I am having an adominable catscan due to some current symptoms that are concerning to me, but the oncologist says it does not sound like cancer at all.  (fingers crossed, please!!!)  I asked about a PET scan (full body catscan that can detect the presence of cancer anywhere and very expensive), but the oncologist reiterated that no matter what the results, the treatment will be the same...and if down the road, I have symptoms that lead us that direction, we'll deal with it then.  Her opinion is that if we deal with what we know for certain in an aggressive and targeted manner, that is best.  It could very well be that if there is cancer elsewhere when we begin, it will be dealt with also during the original treatment plan.  And, as I already knew, she told me that if cancer is elsewhere, I have stage 4 cancer, which is incurable...and I will live with cancer, dealing with what I can to maintain a high quality of life for as long as I can.  If it is not anywhere else, it can be cured.  I really like the latter, don't you?!

We all really like this oncology team and feel we are in very capable hands.  After we left her office at 7:00pm that evening, we were tired, a bit giddy, and felt like an enormous cloud had been lifted.  Having a plan of attack is very calming...as all of us in the AN world know very well!!!

Oh, and speaking of the AN...the staph infection seems to be disappearing.  The healing incision has never looked better and I have 2 1/2 weeks left of IV antibiotics.  The end date for them is 3/3 - one day before chemo begins.  They will give my 1st chemo treatment through this line and then it will removed for good afterward.  Before my next chemo treatment, my surgeon will put in a port that will be under the skin and much easier to deal with.

So, (for anyone who is still reading this very long post!!!), all is in order.  I'm in good spirits, I have a few weeks to get my house in order (literally and figuratively), and to get my library of movies ready!!  Once again, I have surrounded myself with a great team of medical professionals, and I have the best of the best support team at home and in cyberspace...thanks to all of you!!!!

I'll keep you all posted, as always, and thank you for your prayers, laughs, and kind words for me and my family.

Kathy

AN diagnosed 11/14/08, 3+cm, Retrosigmoid 1/13/09, Univ. Hosp., Cincinnati, Drs. Tew and Pensak
no facial nerve or eye issues!
3 more surgeries related to staph infections & osteomylitis over next 13 months.  New diagnosis of breast cancer.  Treatment completed 08/27/10.  Moving on!!!

Jim Scott

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Re: Breast Cancer update
« Reply #79 on: February 14, 2010, 03:51:56 pm »
Kathy ~

Thanks for that comprehensive update that is much appreciated.  I'm so pleased to learn that you have a solid plan of action in place with a team of medical professionals that you feel confident and comfortable about as you begin this new medical adventure.  The chemo protocol sounds very precise and I trust the anti-nausea drugs will be effective for you (I hate to puke, too).  You're right to not get too involved with the details of the radiation until you're a lot closer to that happening.  I have no comment about the wigs as that is foreign territory to me but I assume you'll get the ones you want in the right color and that, when the time comes, you'll wear them well.  :)  

Of course there are no guarantees about the possible spread of the cancer but I feel confident that the prayers of  so many people going up for you will bring you victory in this medical battle.  Your indicated high spirits are downright inspiring.  As you noted, you have a solid team of medical pros, family support and of course, a multitude of online friends all rooting for you.  You can't lose!  I wish you nothing but success and better days as you prepare to commence your treatment.

Jim
« Last Edit: February 14, 2010, 04:53:18 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

suboo73

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Re: Breast Cancer update
« Reply #80 on: February 14, 2010, 04:51:32 pm »
Kathy,

I just read your update - thank you for keeping us posted.
As Jim said - you have a solid plan in place - now go for it!
[Go for the gold!]

You inspire me every time i read your posts - such a positive attitude thru all these medical situations - WOW!  ;D
It is as they say - every day is a gift. 

My continued thoughts and prayers to you, your husband, your daughter and extended family.

Sincerely,
Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

texsooner

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Re: Breast Cancer update
« Reply #81 on: February 14, 2010, 05:03:05 pm »
Kathy, thanks for the update. Jim said it all very eloquently (as usual). Please know that all your AN friends are still pulling and praying for you. 

Patrick
3.5cm left side AN; 11 hour retrosigmoid surgery 8/11/08 @ Memorial Hermann, Houston - Texas Medical Center with Drs. Chang and Vollmer; home on 8/13/08;
SSD(w/tinnitus); dry eye; Happy to be here and feeling good.

Kaybo

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Re: Breast Cancer update
« Reply #82 on: February 14, 2010, 05:53:27 pm »
Kathy~
So great to hear from you - thank you so much for the update.  I was praying for you this morning and wondering how things were going.  Sounds like you have a road ahead of you (which we knew) but your spirit and attitude are going to carry you far - you truly are an inspiration to many!

Love ya, girl!!
K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

sgerrard

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Re: Breast Cancer update
« Reply #83 on: February 14, 2010, 06:20:34 pm »
Hi Kathy,

I for one am voting for
  A) it is not anywhere else and can be cured;
  B) you are in the 97% who don't have too much trouble with chemo side effects; and
  C) we get to see a picture of you in the white hair wig. :)

You sound good, I am glad to hear that the infection business is coming to a long awaited end. Your oncology team sounds excellent, I think you are justified in feeling confident that you are on the right track. All the best to you as always.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

pjb

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Re: Breast Cancer update
« Reply #84 on: February 14, 2010, 08:25:18 pm »
Kathy so happy to hear from you thank goodness the infection is much better and it sounds like you have a great team both professionally and personally and I wish you nothing but the best.  I look forward to reading any updates you can as long as you are feeling up to it.

My prayers will be with you in every step of the way.

Best Wishes,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

opp2

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Re: Breast Cancer update
« Reply #85 on: February 14, 2010, 10:52:23 pm »
We're beside you, We're with you, we carry you. We pray and we remain....
Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

Jackie

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Re: Breast Cancer update
« Reply #86 on: February 15, 2010, 02:02:48 am »
Hi Kathy,

As always, you my dear lady, are an inspiration and a calming force in this ever changing world of ours!Thank-you for keeping us up to date on your treatments and your progress! May your results be astounding and may you soon be cancer-free! Sending you and your family much love and prayers and great strength and power to see you through this journey.

All my best, and many Blessings,
Jackie from Oregon (Donnalynn's Sista)
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

lori67

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Re: Breast Cancer update
« Reply #87 on: February 15, 2010, 08:58:05 am »
Always good to hear from you Kathy!

You sound like you are geared up and ready!  Your huge cheering section is too!

I'm so glad you found doctors that are a good fit.  That's probably a big relief to you.

Keep up that great attitude and fighting spirit.  You have so many people in your corner.

I do have to ask though, what's wrong with looking like Martha Washington?  I'll bet George thought she was pretty hot!   :D

Looking forward to hearing from you again!
Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

CHD63

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Re: Breast Cancer update
« Reply #88 on: February 15, 2010, 09:27:21 am »
Kathy .....

So glad to read the positive news on your progress and treatment plan.  Prayers do work!

Stay warm and safe in all this snow!

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Cheryl R

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Re: Breast Cancer update
« Reply #89 on: February 15, 2010, 10:06:01 am »
Kathy, I am always glad to hear  your  updates and glad it is going as well as can be.    You are in so many people thoughts and prayers and we hope for the best for you!                             
                                                            Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care