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Search: Posts Made By: Colleen
Forum: her2group 09-20-2016, 10:15 AM
Replies: 7
Views: 4,207
Posted By Colleen
Ever want to give in/up?

As a stage IV HER2 gal our treatment will never until we run out of options and they all stop working. I am in year three and doing well but I frequently wonder what for? My kids are grown and on...
Forum: Herceptin / Tykerb 09-20-2016, 10:09 AM
Replies: 686
Views: 173,211
Posted By Colleen
Re: Please post your two cents on Herceptin "side effects" real or perceived!

Oh and vaginal dryness and sex drive yup yup yup. Sex drive gone and hello vaginal dryness.
Forum: Herceptin / Tykerb 09-20-2016, 09:56 AM
Replies: 686
Views: 173,211
Posted By Colleen
Re: Please post your two cents on Herceptin "side effects" real or perceived!

@jksomas I still receive herceptin and perjeta every three weeks. My nose was very runny for awhile after I stopped the taxotere. Looking back I attribute this to hair loss all over the body...
Forum: her2group 08-09-2016, 05:16 PM
Replies: 6
Views: 3,337
Posted By Colleen
Re: Heart health for stage 4

Being a stage IV thriver I exercise like crazy! Swim 2+ miles four days (or more) per week, yoga three days a week, cycle 20+ miles 2-3 days a week especially on hercepton/perjeta infusion days (love...
Forum: Herceptin / Tykerb 07-26-2016, 08:09 AM
Replies: 5
Views: 2,507
Posted By Colleen
Re: Chest pain anyone?

@Pipandor I frequently had chest discomfort during my infusions when I had my port but it did not linger after the infusion was finished. I demanded my port be removed even though I am a stage 4...
Forum: her2group 07-26-2016, 07:59 AM
Replies: 21
Views: 7,577
Posted By Colleen
Re: Long-term Herceptin: How many and how's it effecting your life?

Next week will be treatment number 48 for me. I still receive hercepton and perjeta every 3 weeks via an IV infusion thru my arm, i have good veins and had my port removed due to its inefficiency and...
Forum: her2group 07-19-2016, 08:17 AM
Replies: 45
Views: 22,198
Posted By Colleen
Re: Looking for hope

Great news @Benk! Your wife is heading toward a complete pathological response to systemic treatment. So happy to hear this news!
Forum: her2group 07-07-2016, 09:44 AM
Replies: 3
Views: 2,606
Posted By Colleen
Headaches

Has anyone experienced headaches that just don't stop? I have had one for over a month with little reprieve. I have an appt with my onc next week and with my PCP the following week. Not sure if I...
Forum: her2group 06-01-2016, 07:30 AM
Replies: 45
Views: 22,198
Posted By Colleen
Re: Looking for hope

@Benk you are NOT reading too much into this initial response to chemo therapy. This is great news and hopefully will continue. My first chemo showed dramatic improvement within three weeks. Your...
Forum: her2group 05-26-2016, 07:54 AM
Replies: 36
Views: 11,501
Posted By Colleen
Re: 12 years Stage 4 - Still A-OK

OOh I LOVE you for sharing with us today!!! Its so wonderful to hear of other HER2 sisters kicking this beast's ass! Happy Birthday!
Forum: Herceptin / Tykerb 05-26-2016, 07:47 AM
Replies: 25
Views: 12,801
Posted By Colleen
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...
Forum: her2group 05-15-2016, 09:40 AM
Replies: 10
Views: 3,723
Posted By Colleen
Re: Stage 4 after 2 yrs being stage 2

I did six cycles of taxotere, herceptin and perjeta and reached NED. Dropped taxotere and continue with H & P every 21 days. I have been on this regimen for over two years and remain NED. This has...
Forum: her2group 05-13-2016, 11:01 PM
Replies: 32
Views: 11,688
Posted By Colleen
Re: Working thread - what do you think the HER2+ standard of care should be really?

Unfortunately it appears the "standard of care" is let's wait till the brain mets are significantly symptomatic enough before we start diagnostic testing. Stage IV it should be routine! Thankfully...
Forum: her2group 05-10-2016, 03:08 PM
Replies: 45
Views: 22,198
Posted By Colleen
Re: Looking for hope

@Benk Genentech makes herceptin and perjeta. Genentech offers a copay program here in the states so maybe they do the same in Australia. Go to the Genentech website to find information it may help...
Forum: her2group 05-10-2016, 06:16 AM
Replies: 45
Views: 22,198
Posted By Colleen
Lightbulb Re: Looking for hope

@Benk I also kept "moving" thru out treatment. I swam, did yoga, and walked a lot. I was slower but I never stopped these things helped to heal along with a good accupuncturist (she was a god send)....
Forum: her2group 05-09-2016, 03:41 PM
Replies: 45
Views: 22,198
Posted By Colleen
Re: Looking for hope

@Benk I would ask the doctor about continuing Herceptin and Perjeta both during the taxane phase and post. I did taxotere with herceptin and perjeta for six cycles and achieved NED without surgery or...
Forum: her2group 05-09-2016, 03:15 PM
Replies: 19
Views: 27,467
Posted By Colleen
Re: Perjeta/Herceptin early BC? Share your experience.

I am also stage IV with a lesion to the liver. I have been receiving herceptin and perjeta every three weeks since November of 2013 with no end in sight. Its a challenging mental adjustment to know...
Forum: Profiles In Courage 04-09-2016, 10:58 AM
Replies: 15
Views: 10,171
Posted By Colleen
Re: tumor markers

My onc says tumor marker blood tests of any kind are not a perfect indicator of cancer being present. I get the ca 27/29 every 9 weeks and scans every 6 months now. A good question to ask when I see...
Forum: Profiles In Courage 04-09-2016, 06:51 AM
Replies: 15
Views: 10,171
Posted By Colleen
Re: tumor markers

My 27/29 tumor marker test was around 124 at dx, dropped to 54 at the end of my 6 cycles with THP, still on herceptin and perjeta and it hovers in the teens to low 20s. Stage IV at dx but have been...
Forum: her2group 03-29-2016, 05:22 PM
Replies: 32
Views: 11,688
Posted By Colleen
Re: Working thread - what do you think the HER2+ standard of care should be really?

As a stage IV HER2 patient I was not offered a brain MRI or suggested to have one even though I had a lymph node above my clavicle involved, which was not noted in the first PET/CT but was noted in...
Forum: Herceptin / Tykerb 03-29-2016, 05:01 PM
Replies: 25
Views: 12,801
Posted By Colleen
Re: lingering side effects after finishing herceptin

@murphy my oncologist is not thoroughly knowledgable of the side effects of perception either. The drug company has "nurses" who go strictly by the drug pamphlet. I would consider a primary care...
Forum: her2group 03-19-2016, 01:18 PM
Replies: 7
Views: 3,062
Posted By Colleen
Re: PET/CT vs CT only

Also I did NOT like the way the CT scan made me feel, it was really weird.
Forum: her2group 03-19-2016, 01:17 PM
Replies: 7
Views: 3,062
Posted By Colleen
Re: PET/CT vs CT only

@ SoCalGal I agree about the insurance company they suck! But my onc's NP is a dimwit. She screwed up the initial peer to peer; I could have done a better job! I won't have anything to with the NP...
Forum: her2group 03-19-2016, 10:14 AM
Replies: 7
Views: 3,062
Posted By Colleen
Re: PET/CT vs CT only

@ Agnes thank you; that is what I figured a PET/CT will only be used in the future if there is progression/recurrence. So far so good
Forum: her2group 03-14-2016, 01:43 PM
Replies: 8
Views: 3,155
Posted By Colleen
Re: Return visits with oncologist

Tricia I have taken it up with her and basically what I got was, "we will do our best to schedule both on the same day, but if others in the infusion area realize we are doing this for you they will...
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