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Old 04-06-2016, 12:06 AM   #1
rinaina
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Been a while, been very busy medically

Not even sure where to begin but I will try and bring you up to date as to why I've been absent for quite a while other then a few peeks here and there.
My history is rich with medical issues ever since 1977 when I was diagnosed with Sjogrens Syndrome. As a result of that disease I have continued issues including kidney stones, renal tubular acidosis, arthritis, and the usual symptoms from this auto-immune disease which can be quite dibillatating at times. I have had a 4 level cervical fusion, a total right shoulder replacement, a partial parotidectomy, removal of a parathyroid gland, her2+ breast cancer in 2006, a double mastectomy with failed reconstruction due to radiation that left me with horrendous huge open wounds to heal over the course of a year. I have since had many reconstruction surgeries and one more coming up in early May which should be the last one. I am a walking testament that you can make it through just about anything with the right attitude and support. In June I will be having another shoulder replacement most likely on my other shoulder. I'm hoping for the same positive results I had with the first shoulder. If you add all this up, I believe I have had Just under 10 surgeries since 2002 and I'm not even counting my lumpedtomy, mohs surgery for a basal cell carcinoma and I'm sure I am forgetting something. I have finally had success with reconstruction and have an implant in my right breast following a latissius flap with an expander. My left breast needs one more surgery to reduce and lift as it lost its shape due to the wounds in 2014. In spite of all this, I feel blessed that my body has been able to handle and recuperate from all I've been handed in my life. I love life, family and friends too much so I choose to have a positive attitude and keep on pushing through the challenges, of which there have been many. It hasn't always been easy and I've had more then my share of pain, I've had my moments with tears and feeling down, but I'm fortunate to have great support from family and friends and I am thankful for the strength God has blessed me with to help me somehow push through my many challenges. So my her2+ sisters, you now can understand why I haven't been very active as I have been busier than I'd like with recoveries and a few more to go in the near future, but I want you all to know, I have never forgotten about this wonderful group and all the support I received in the past. Stay strong.
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~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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Old 04-06-2016, 12:43 AM   #2
Jackie07
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Re: Been a while, been very busy medically

Good to hear from you, Rina. Thanks for the encouragement.

And thanks for bringing us up to date. We'll be thinking of you.
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Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
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Old 04-06-2016, 12:56 PM   #3
Carol Ann
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Re: Been a while, been very busy medically

Rina, so glad to see your post! I think of you often and I was wondering how you were. Keeping my fingers crossed that this last reconstruction surgery is your last EVER!!!

Carol Ann
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July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 04-07-2016, 02:25 PM   #4
Laurel
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Re: Been a while, been very busy medically

Wow, Rina, you have been busy! I think you are due a nice long walk with perfect health with no surgeries on the horizon for many years! At least that is my sincere hope for you. You have a warrior heart and the spirit of a survivor. Glad you stopped in and shared. Your history is inspiring!
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Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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