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Search: Posts Made By: Colleen
Forum: Profiles In Courage 11-05-2018, 01:16 PM
Replies: 51
Views: 24,589
Posted By Colleen
Re: How many years NED? Give others hope

5 years since stage IV denovo dx, still in treatment but still here.
Forum: her2group 11-05-2018, 10:38 AM
Replies: 389
Views: 106,309
Posted By Colleen
Re: Calling all stage iv sisters

Its been 5 years since my stage IV denovo dxd. Its been quite a journey and not always easy, but I am still here, still receiving herceptin and perjeta every 21 days. There is no end in sight as...
Forum: her2group 06-03-2018, 07:43 AM
Replies: 14
Views: 7,911
Posted By Colleen
Re: Anyone Stage IV De Novo With 10+ Years NED?

I was dxd de novo stage IV in 2013. I only did systemic treatment as all scans and biopsy could not find any cancer to remove or radiate six months after dx. Such a happy dance at that moment to...
Forum: her2group 05-15-2018, 08:23 AM
Replies: 3
Views: 2,277
Posted By Colleen
Re: When should we consider switching Oncologists

I have thought of changing oncologists more than once in the past four years. After “interviewing” several other oncologists I decided to stay with mine. While I feel her answers to my questions lack...
Forum: her2group 05-15-2018, 08:15 AM
Replies: 71
Views: 7,570
Posted By Colleen
Re: Cancer 'n Me

@SoCal girl cancer sucks! Hang in there and know your HER2 sisters are all thinking/hoping/wishing/praying for positive outcomes. Sending positive thoughts your way. FYI I live in SoCal too so if you...
Forum: her2group 05-15-2018, 08:02 AM
Replies: 35
Views: 15,648
Posted By Colleen
Re: Working thread - what do you think the HER2+ standard of care should be really?

Great article! For those of us who read this how many went running for their initial diagnosis information? I certainly did! My HER2/CEP17 ratio was <8 and I am 4 1/2+ years out from a stage IV dx...
Forum: her2group 04-27-2018, 02:00 PM
Replies: 9
Views: 3,823
Posted By Colleen
Re: Our Dear Agness Is Not Well

So sad to read this. Agness shared so much of herself here and in other support groups. She shared so she could have a voice and so we could learn from her. Sending prayers to Agness and her loved...
Forum: her2group 02-13-2018, 09:51 AM
Replies: 26
Views: 10,961
Posted By Colleen
Re: Insurance Frustrations

Yes Aetna is in the news in California for doctors not reading patient files before denying or approving health care needs. I think this gives you more leverage to receive the "standard" treatment...
Forum: her2group 02-06-2018, 01:19 AM
Replies: 16
Views: 4,899
Posted By Colleen
Re: When to consider ending treatment?

Thank you everyone for the feedback. @paul I like the analogy it is thought provoking. Guess I will stick with my H & P for now unless I no longer have insurance or I decide to throw the towel in.
Forum: her2group 02-01-2018, 08:01 AM
Replies: 16
Views: 4,899
Posted By Colleen
Re: When to consider ending treatment?

Thank you for the responses! You have my mind beginning to turn a corner. I must find ways to keep my costs at a minimum, and that will eliminate some stress.
Forum: her2group 01-31-2018, 03:18 PM
Replies: 16
Views: 4,899
Posted By Colleen
When to consider ending treatment?

As a stage IV HER2+ cancer thriver for the past four+ years I wonder when treatment should end, if ever? I have been in a full remission for four years but continue herceptin and perjeta every three...
Forum: her2group 01-31-2018, 03:09 PM
Replies: 4
Views: 3,654
Posted By Colleen
Re: Stealth 22% price rise on herceptin took place in July!

But the article is labeled as "fake news". However I did notice a slight increase for herceptin on my billing statements this past year, but it wasn't 22.7%.
Forum: her2group 01-24-2018, 10:20 PM
Replies: 14
Views: 7,836
Posted By Colleen
Re: Pathological complete response

I am four years out, now in my fifth year of pcr. But like other metastatic thriver I still receive herceptin and perjeta every three weeks. I love riding my bike to my infusion appointments, 11...
Forum: her2group 09-20-2016, 10:15 AM
Replies: 7
Views: 4,531
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: 689
Views: 189,118
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: 689
Views: 189,118
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: 3,635
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: 3,024
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: 8,020
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: 23,050
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: 2,909
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: 23,050
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: 12,028
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: 13,826
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: 3,974
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...
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