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Old 05-26-2016, 07:47 AM   #24
Colleen
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Join Date: Jun 2014
Location: Monarch Beach, CA
Posts: 88
Re: lingering side effects after finishing herceptin

@Jedrik - I had similar side effects that lasted and /or eacalated after dropping the "nasty" part of the chemo regimen. My neuropathy worsened for close to a couple of months after the taxane was dropped. I finished the taxane in February of 2014 and five months later I had a lovely gray "buzz cut" for my daughter's wedding, not what I was expecting. I had thought I would have a bit more hair 5 months later but nope didn't happen. My hair has grown but I keep it short, so much easier, and the gray is gone (cut off over time). My nails are thinner now so I also keep them quite short, I don't think they will ever be what they once were. I use a nail strengthner but do not use colored polish as it seems to negatively affect them. I too experience mild weird cramps in my feet and legs but try to constantly keep my electrolytes balanced. I love to swim and cycle regularly. My neuropathy has dissipated over time but is not completely gone, some nights are worse than others which is usually a sign I am over tired and need rest. As for the nose drip this is initially caused by hair loss, we lose hair "everywhere" including the lining of our nose. Without those tiny hairs to filter we drip drip drip. Somedays I thought a tampon in my nose might be a good idea :-/ The drip is better and comes and goes. I too spoke with the people at Genentech and is all they do is read the "box label", my oncologist is not much better. When I tell her these things she looks at me like I have two heads. Also my eyelashes and eyebrows never fully grew in, so I color on eyebrows every day and only wear mascara occasionally. Hang in there things will improve, its just a much slower process than we hoped for. Ease into the exercise part, you are not back to where you were prior to the taxane but you will get back there. Read the book Mind Over Medicine, its wonderful. I also used a lot of acupuncture to promote healing.
__________________
*October 2013 mammogram suspicious lump right breast
*Oct. 2013 Breast MRI reveals 2.5 cm tumor right breast 6-7 nodes positive
*Nov 2, 2013 PET/CT tumor right breast, 6-7 nodes include right axilla and one above clavicle, 3.5 cm lesion on dome of liver
*Nov 4, 2013 meet oncologist: schedule port placement
*Nov 5, 2013 baseline echo 65%
*Nov 13, 2013 start THP six cycles every 21 days
*Nov 20, 2013 blood counts now coming back quickly start neulasta following next treatment, no pain and it worked!
*Jan 19, 2014 syncope, ambulance ride to hospital, cracked a tooth and chipped three, six stitches in chin, CT scan shows brain is ok but am required to follow up with neurologist.
*Jan 28, 2014 PET/CT shows great response to THP
*Jan 28, 2013 echo, all is good 60-65%
*Feb 2014 brain MRI, no missing parts and no extra parts, all clear
*Feb 27, 2014 last treatment with taxotere
*Apr 22, 2014 PET/CT shows complete pathological response to THP amen!
*Apr 22, 2013 echo 60%
*continue vitamin H and P every 21 days until...eternity?
*May 2014 emotional melt down, demand port be removed.
*May 22 2014, biopsy of original tumor rt. breast, no cancer cells in 8 tissue samples, amen
*June 2, 2014 Port removed, happy dance! Just couldn't tolerate the port any longer; it never worked properly and was extremely uncomfortable
*July 24, 2014 echo 60%
*August 28, 2014 PET/CT all clear NED
*Oct 29, 2014 echo 65%
*Feb 4, 2015 PET/CT NED!!!
*Feb 4, 2015 Echo 65-70%
*May 19, 2015 mammogram all clear
*May 19, 2015 Brain MRI all clear!
*August 18, 2015 PET/CT NED!!! amen!
*March 8, 2016 CT w/contrast NED
*March 10, 2016 Echo normal
*June 2016 Echo normal
*September 7, 2016 CT scan w/contrast NED
*September 8, 2016 Echo normal
* still receiving infusions every 21 days of Perjeta and Herceptin with no end in sight......
*March 2017 CT scan NED and echo normal
*May 2017 mammogram all clear!
*November 2017 CT scan NED and echo normal
*May 2018 echo normal
*December 2018 ct scan with contrast and nasty drink-all clear!


"Better pass boldly into that other world, in the full glory of some passion, than fade and wither dismally with age."
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