1 Very Palpable Hit's Profile Page

Biography

I am a 35 year old woman with BRCA 1 status. Two years ago, following some strange anomalies on the breast MR they had been following for years, I opted for prophylactic mastectomy. Pathology came back without cancer. More recently, I found a lump above my collarbone which tested positive for cancer. I found it in April this year, following being treated with ventolin for a couple of months for unexplained shortness of breath. I went to my doctor, and finally was sent to an otolaryngologist. He biopsied the lump. I was told it was a non-small cell carcinoma of unknown primary origin. Within a week I had full body CT scans, revealing a 8×8x3cm mass where part of my fallopian tube should be. I’m still waiting for the report of the chest CT. We will be confirming whether this is a malignant tumour as well, but looking to see again whether this is another metastasis from an as yet still unknown primary. Very ironic, very scary. Did my prophylactic mastectomy make it more difficult to detect a breast cancer before it spread?

Cancer Symptoms

I found a lump in my neck above my collarbone, and I had been having shortness of breath when speaking and exercising. Also tightness of upper chest when exercising.

Surgery Description, Dates & Side Effects

Radiation or Proton Therapy Description, Dates & Side Effects

Currently deemed unnecessary (following pathology). Will reassess in February 2012 to see of radiation of supraclavicular lymph nodes is required.

Chemotherapy Description, Dates & Side Effects

Combined carboplatin and taxol, both administered systemically by IV started August 10, 2011, with last cycle administered November 23, 2011. Side effects included: nausea that was only gotten under control after the second administration using about 5 drugs; intense fatigue; muscle and joint pains that were reduced with tylenol and later greatly reduced with gabopentin; intense neuropathy in hands and feet, but even lips and chin until the gabopentin took the edge off that, too. Neuropathy still intense in first week of every cycle. Other side effects included intense fatigue, weakness, vision problems on two occasions (blindness in one eye when reading lying on side), severe constipation, and cognitive effects (short term memory dysfunction, inability to solve puzzles, inability to multitask or withstand multiple stimuli at once). There’s talk of giving me a PARP-inhibitor for maintenance therapy in 2012.

Fundraising Description

Ovarian Cancer Walk of Hope
http://my.e2rm.com/personalPage.aspx?registrationID=1242519&langPref=en-CA&Referrer=http%3a%2f%2fovariancanada.org%2fWalk-of-Hope%2fHome

Clinical Trials

They all want my tissue.

Comments:

Thank you for your prayers. My soul must have heard it because I can’t quite crying, so I will just let it out. Strange but I always cry when prayers are being said!

Love back to you #1..Barb

Posted on February 15, 2012 at 11:16:05 AM by Private User

Dear 1, I think righteous anger can be a most delicate, yet powerful ally to enlist. It always used to be easiest for me when enlisting righteous anger on behalf of others. Which is to say, that my focus didn’t get tripped up by ego.
When it comes to myself, these days it takes me a bit of pondering, and circling to get a view from as many angles as I can. That actually serves a couple of functions for me. It helps me focus on what the real issue(s) is; and it helps me stay dispassionate enough not to trample myself on the way to my solution.
And by solution I mean whatever step or series of actions are going to realistically make me feel better. ...Whatever I have to do in order to get what satisfaction I can; and whatever I need in order to avoid carrying around resentment.
I think resentment is the worst self-inflicted injustice that we haul around through our days. It can grow to monstrous proportions.
And for the life of me, dear 1, I have no idea why it’s taken me some 40+ years (almost 1/2 a century) to begin understanding how honoring RIGHTEOUS ANGER was another way to love.
Thanks for gifting my profile page. You make me smile.
Hugs, Nicole

Posted on February 11, 2012 at 9:59:28 PM by Nicole (Lady Of The Larynx)

Hi sweetie …hugs & prayers

Posted on February 2, 2012 at 7:51:44 AM by Serenity

Hey, I just read you last 2 posts and I will say that I love your writing. I too would have been offended if a friend added “no cancer” to an invitation. I’m sure she meant well, but just didn’t realize what she was saying. I personally talk about my cancer everyday, and worry about my cancer everyday! It has become a part me, and if someone is uncomfortable about cancer, well, in my opinion that’s just their problem. They should consider themselves lucky that they don’t live in our world! I too have a horrible problem with neuropathy, more so now than when I was having chemo. My chemo doc had me on gabapentin, I was up too 3000mg a day. I made her ween me off of that drug since I wasn’t thrilled about taking all that medicine. My gyn/onc put me on acetyl-l-carnitine starting at 500mg twice a day for 3 days then increasing to 1000mg twice a day. It’s a supplement that can be bought at a vitamin store and it has made a HUGE difference for me! More so than the gabapentin…Just wanted to share that with you since I know how painful the neuropathy can be. Take care and you are always in my thoughts and prayers…Peace & Hugs…Carla

Posted on January 29, 2012 at 5:46:38 PM by Private User

Thanks a bunch for supporting me. I appreciate it!

Danean

Posted on January 29, 2012 at 3:29:47 PM by Danean