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06-03-2007, 07:59 PM
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#1
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Starting herceptin this Thursday June 7
Hello gals,
I am having my loading dose of Herceptin this Thursday after completing my chemo of FEC-Taxotere - 3 rounds of FEC, 3 rounds of Taxotere.
I am both nervous and excited - It's still unreal for me that I went in for a breast reduction on Oct. 16, 2006, and came out with breast cancer.
Any words of wisdom and support would be greatly appreciated.
Thanks so much,
Caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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06-03-2007, 09:04 PM
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#2
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Senior Member
Join Date: Dec 2006
Location: Massillon, Ohio
Posts: 247
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Bc is a whirlwind of an experience. I can only imagine your suprise after surgery. You can do it, you have already been through the worst of it. I don't think you will be suprised this time. Herceptin is very tolerable for a large portion of the popu;ation. I actually don't know a single person who has had a bad reaction. There are loads of people here who know a lot about herceptin, and some have been on it for awhile. I am on a weekly dose of herceptin and have always tolerated it very well. I do not take anything with herceptin except tylenol (I got off the benedryl within a couple of weeks) I am sure you will be fine. Everyone always say it is best to drink water before, during and after treatment. Your nurse should keep a eye on you to make sure you react well. I am sure you will do fine. I am not going to say have a good time but do something that occupies the time you get treatment. You should plan a night out (or in) to celebrate the wonderful drugs that sustain our lives. We need to be happy that we have the resources that can treat us. Just think you could be like me and have to go every week. YUCK!! I am trying to convince my ONC that every 3 weeks would be best for me. Let's hope!!! I am sick of the weekly visits (plus the cost) it is so hard to work around my work schedule. It makes we wonder about my ONC, because I would say that 90% of the people on this site get the 3 week dose. Good luck and celebrate, no more chemo!!!
__________________
Laurie
Diagonsed 8/10/06 (found own lump)at 35
Her 2 +++, er-/pr-
4 A/C 8-29-06 to 11-06
Lumpectomy, node dissection- 11/30/06
Pathology report stage IIIC
1 tumor 3 cm
10 of 15 nodes +
12 Taxol 12/18/06-03/06/07
Herceptin 12/18/06- 12/11/2007 done!!! yeah!!!
33 rads started 3/22/07, done!! yeah!! 5/07/07
Lymphedema diagonsed 2/1/07
BRCA1/BRCA2 negative
port out 1/10/08
pregnant after 6 yeas of trying- due mid feb.
Ryder David Kessel Hunter born feb.6th 2009
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06-03-2007, 09:45 PM
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#3
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Senior Member
Join Date: Aug 2006
Location: Toronto
Posts: 64
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I have only 2 of my 18 herceptins to go. After the first one I felt a little headachey I think, but after that I didn't have any reactions. I do have a pretty drippy nose but that's about it for side effects. I don't do any benadryl or tylenol. It takes about a hour, I usually bring something to read.
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06-04-2007, 07:27 AM
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#4
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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I have been on Herceptin about 7 months with no problems, maybe a little weight gain, I take it every two weeks just for more free time and get a two
week dose over an hour. I like it that way. Good luck with your treatment, it
is easy.
patb
__________________
patb
Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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06-04-2007, 08:01 AM
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#5
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Senior Member
Join Date: Nov 2006
Location: London, England
Posts: 96
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Hi Caya, I'm on Herceptin #12 with 6 more to go, and have been fine on it, a complete breeze and doddle compared to chemo (similar to you, I had 4 FEC and 4 Taxotere). I would say I feel slightly as if I'm going to go down with a cold, but even that has gradually decreased, I think. I do have a drippy nose, and a crusty nose in the morning (oh the glamour), but that's it. I learned here that these symptoms arise because the Herceptin affects the formation of the cilia (fine hair-like cells) in the nasal passages.
I can relate to your sense of shock, as my diagnosis was also a surprise to me, although I had more of a lead-up to it than you. I had the tiniest sense of slight firmness on my right breast, and when I went to have a mammogram just to be on the safe side, and the results came back as cancer, my breast surgeon told me that in fact it was in a different area and the firmness was nothing to do with it. But how amazingly lucky was I, and I guess you too - when would we have found it otherwise??
What a good idea, Laurie, to have a night out to celebrate these wonderful treatments available to us and saving our lives. I don't tend to think that way, and it's really good for me to be reminded. Nice one!
Wishing you well on Thursday, Caya, and congratulations on finishing the chemo.
Caroline
__________________
Caroline
Diag. March 10th 2006, aged 46.
Invasive ductal carcinoma, 2cm + multifocal. Stage 2, Grade 3
HER2+++, ER+/PR+
Right mast. May 2006. 6 of 20 nodes positive
FEC x 4, taxotere x 4; port implanted after 6 cycles
Rads x 25
1 year of Herceptin ended Nov 07.
Arimidex 5 years
Considering reconstruction, maybe soon...
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06-04-2007, 08:41 AM
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#6
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Thanks for the info
Thank you Laurie, mke, Patb, and Caroline UK for your advice and support. Laurie, I like the idea of celebrating - my onc. had told me that Herceptin is a true wonder drug that is literally changing the prognosis for us HER2+ women from a "poorer" one (a few years ago) to a "much better one."
I have every hope of beating this and getting through my one year of Herceptin.
Caroline - I had a mammogram and breast ultrasound about 4 months before my reduction surgery - showing nothing - lol. It truly is a miracle I had the reduction at that time, the docs say because of my big, dense breasts the BC may not have been found for another year or two and it would not have been stage one with clear nodes at that point - yikes!!!
Thanks again,
Caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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06-04-2007, 12:46 PM
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#7
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Senior Member
Join Date: Sep 2006
Location: Marengo, IL
Posts: 518
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Caya
You'll do fine on Thursday. My nurse told me if you were to have a reaction it would be on the loading dose and they are very rare.
I had a very hard time with chemo, at the end of AC and the middle of taxol combined with Herceptin. I did not know if it was the taxol or Herceptin. But I have had 4 Herceptin alone and have no side effects. My treatments are every three weeks and it takes about 30 minutes. Very easy.
I am so thankful for Herceptin. We will be living proof it does make a difference with early stage breast cancer as well as metastatic disease.
I'll be thinking of you on Thursday. God Bless
Donna
__________________
Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
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06-04-2007, 01:25 PM
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#8
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 3,000
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Caya, it is me, Marie Caya(Marie G-Believe51)
I will be thinking of you especially on the 7th. Things should go "o-Caya" for you. We will be saying specials prayers for you as we always do. My hubby has handled his Herceptin very well. He has trouble with numbness & flu-like symptoms. Go get 'em girl, and write if you need us!!Big hugs and prayers>Waiting For A Miracle>Believe51
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06-04-2007, 02:11 PM
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#9
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Go Caya and all you Superstars!
I guess my story is in my signature and bio. Tk me 2 yrs on this site to figure out how to add these. Next is how to get my picture on board.
'95 dx - infiltr lobular carcinoma + 2 out of 18 nodes. '98 multiple mets ino liver. Her+ 80% ER/PR-. Been on my miraculous, life-saving Herceptin since '98. Wouldn't skip a treatment. Started ev wk, back in the day. '01 switched to the ev 3 wk plan. Get drug w/500cc's saline. Had a new pharmacist once who gave the standard 250 saline, but felt shaky, light-headed as leaving, a bit zonked. So they give me my 500 ccs. Slightly drippy nose. I can live with us.
Taxotere for 9 mnths got the job done, but wow! the side effects were huge for me. This is a breeze. I get it over a half hr. Loading was 2 hrs, then 1 1/2 hrs., then 1 hr. Now l/2 hr. With a port. Piece of cake.
Note in signature -- Herceptin was FDA fast-tracked at end of Sept '98. I was dx w/mets in Aug '98. How lucky I feel. There to save my life. I believe it keeps the mets at bay. Stable, NED since '99. Would never go off -- as long as my body and heart can take it (ECHO ev 6 mnths -- EF good), as long as I can psychologically stick w/the plan (I say Yeah! Thank you God for this life-saver, and, thank you Dr. Slamon -- who I've met and hugged and personally thanked for saving my life), as long as insur co doesn't balk (not once -- again LUCKY)... THAT'S THE ADVICE I GOT FROM SLAMON, FROM PEGRAM, HIS PARTNER IN DEVELOPING HERCEPTIN AFTER SLAMON ISOLATED THE HER 2 gene and found it to be the cause of 20% of bc. Also I have 3 other oncs who say -- don't go looking for trouble. Stay w/it. That's my view. Like insulin for a diabetic. Like meds for a person w/high bld pressure. It's a savior.
Praying for continued good results for you and all the fabulous warriors on this board. I love them all. Soul Sisters to be sure. ANDI
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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06-07-2007, 06:23 AM
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#10
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 3,000
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It's Believe51
Thinking of you today as always, it is our treatment day too and that makes me feel even closer to you!!! Love & Prayers.>>Waiting For A miracle>>Believe51.....(Marie Caya G)
Husband dx @50yrs 9-06 w/Stage IV Inflammatory HER2+Breast Cancer and something has just stopped working 5-07
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06-07-2007, 12:47 PM
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#11
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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I'm back from my loading dose
I just had my loading dose of Herceptin this morning - as you all predicted, it was totally uneventful. No premeds, no tylenol - the infusion was the usual 90 minutes, then they watched me for an hour and nothing happened!!
Thanks also to Donna, Andrea and Marie Caya for also responding, and thinking of me today.
I do look upon this drug as the miracle that will keep the beast at bay -
Thanks again,
Caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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06-07-2007, 12:59 PM
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#12
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Hi Caya,
I'm happy for you that your loading dose of heceptin was uneventful. I had an uneventful loading dose as well and my every 3 week, one full year of herceptin proved to be uneventful as well. I exercised throughout and had a very strong heart. Not sure if the exercise helps or not but I figured it surely couldn't hurt.
God's Peace surround you Caya,
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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06-07-2007, 01:56 PM
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#13
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Herceptin Is Your Lifeline!
Caya, so proud of you! It's no biggie, right? You can do this. This is the "easy" chemo, or as Steph calls it Vitamin H. I love that! I love thinking of it that way. It's not chemo -- it's a monoclonal antibody, that targets a specific defective gene and corrects it from overexpressing itself and becoming ca.
It's your lifeline. I hold on tight and take the ride with my head high, as it pulls me through rough waters, to safety. Remember -- cancer is not the enemy, FEAR is your worst foe. Remain full of loving, healing energy and you will find you will not drown. You have so much to live for and to be grateful for. You are truly blessed. It could always be worse, I always tell my husband -- I AM LUCKY.
Did you notice how radiant Life is? Each day is a wonderful gift!
Sending you loving, healing energy... ANDI (BB)
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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06-07-2007, 07:20 PM
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#14
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Thanks again for your support
Thanks Mary Jo and Andi for your support - I love the Vitamin H - that is what it feels like - it's true, we are lucky to have this drug.
And Mary Jo - I fully intend to get back into exercising, as soon as get a little stronger from the chemo - I had FEC - Taxotere - those 3 Taxoteres nearly did me in. I was a regular gym girl - 4 -5 x per week before the BC dx - so I am hoping to swim and walk this summer to get back into shape.
My MUGA score was 64, I think this is pretty good. I will have another one in 3 months.
Starting Tamoxifen in 4 weeks.
Thanks again
Caya (Caryn)
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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06-08-2007, 06:58 AM
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#15
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 3,000
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Goodie
Go get 'em girl, stay well!!..>Waiting For A Miracle>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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06-08-2007, 08:11 AM
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#16
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Glad to see that your first dose went well...you will do just fine!!!
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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06-08-2007, 01:09 PM
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#17
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Caya
Drink 10 glasses of water a day, to flush out all toxins, to hydrate and keep yur skin supple. Filtered and/or bottled water. Think of it as a prescription for wellness.
Co Enz Q10 -- I take 150 AM and 150 PM. More and more studies showing benefits. Argenine keeps heart strong and EF up.
If Imodium doesn't work, Wobenzm N -- 2 AM + 2 PM -- changed my life. Then came Effexor -- to help my hot flashes, which it failed to do, but keeps me cheery AND fixed my IBS (wc began w/Taxotere and remained for all these yrs, until...)
Slightly drippy nose. No aches or pains. Fatigue. Have supplements I take for that. Use vaseline in nostrils at night. Dry eye (since Taxotere) now under control w/Refresh + (has NO preservatives). Indiv little vials, one in AM, one at PM, sometimes one when I get up to pee middle of the night. Keep vials in pocketbk, on nightstand, near toilet and sink. Instant relief.
Have redness on upper arms and just under collarbone. Who knows what from? Oncs keep telling me we're in uncharted waters. Who's been on Herceptin since '98? No bk on longterm side effect, but heart strong, EF gd. ECHOs ev 6 mnths to be sure.
You sound like you're on the right path. Sending loving, happy, healthy energy your way... ANDI
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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06-08-2007, 09:25 PM
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#18
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Senior Member
Join Date: Jan 2007
Location: Adelaide, South Australia, Australia
Posts: 144
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Hi Caya! Congratulations on getting through chemo!!!!!
I had 4 3-weekly ecs, then yesterday had my 4th of 12 weekly taxol and herceptin treatments. The first two were long (because they go so slow) and arduous - the pre-meds with the taxol wiped me out. But the next day on both occasions I was just fine.
And, I am feeling so alive and healthy compared to on EC, my quality of life has returned, I am positive and focussed, and have returned to work.
Any of the side effects I am having (there are few - slight peeling on feet, achiness about day 3 but not severe at all, funny bowels) seem to be from taxol and pre-meds. So I can confidently say that herceptin seems more than doable - it is for me a walk in the park.
I have read others posting about se's and it seems that some of that might be because the solution the herceptin is mixed with - in my case all along it has been mixed with a weak glucose and sterile water solution, basically on the morning of my infusion. That might be helping.
I just read down and realise you'd posted to confirm you'd had an uneventful loading dose - good one!!!
Happy going, Caya!
Belindaxxx
__________________
Belinda
- Diagnosed 3 Jan 2007, Stage IIb, Mastectomy and axillary clearance 10 Jan 07, 6 of 19 nodes affected, multi-focal cancer, HER2 positive. Second mastectomy (prophylactic). Chemo - AC 3 months, Taxol 3 months - then radiation 5 weeks.
- Aug 2011 - Diagnosed with Stage IV mets to lung, sternum and 12 or so thoracic nodes - Rads to Sternum, then weekly abraxane and herceptin for 12 weeks.
- May 2012- good scans - all nodes still about normal size, hole in sternum repairing, lung tumour 'obliterated'.
Ongoing herceptin every 3 weeks. Bloods still all good! Life good!
- March 2013 - recurrence - tumours in lungs and mediastinum (coughing up blood) - immediate radiation treatment to right lung and mediastinum, still on Herceptin, and 3 months of Vinoralbine - stable for a little while!
- Coughing and breathlessness started again September 2013, treated as radiation-induced fibrosis (which can be seen on scans - albeit stable). ie puffers, steroids
- January 2014 - cough becomes bloody again, scans show big mediastinal tumour wrapped around and choking the life out of my right main bronchus, radiation deemed off limits as my lungs are hypersensitive to radiation (measured by existing damage from 2013) .....................- ie I am in the 5% of people likely to suffer severe radiation damage to the lungs that they warn you about before starting treatment! (so special! :) )
- Started chemo Feb 2014 - continuing Herceptin (continuous since Aug 2011), with Carboplatin and Gemcitabine. Discontinued Gemcitabine because of se's. Starting cycle 5 Herc/Carbo 5 May 2014.
- Meantime.....coughing and breathlessness increased to SCARY levels with racing heartbeat that won't slow down, breath that won't come back, even just walking to the bathroom or up 3 or 4 steps.
- ICU from May 5 2014, collapsed right lung due to tumour, small pulmonary embolism (left), tumours growing in mediastinum left and right, dvt lower right leg
- Plan seems to be bronchoscope next week to see if tumour can be lasered and stent inserted in right bronchus to reopen air access to lower parts of right lung. If that is successful might be able to have brachytherapy to worst tumour, otherwise no more options for external radiotherapy.
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06-09-2007, 11:42 AM
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#19
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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HERCEPTIN + 500 CCs SALINE
HI ALL! I've posted this before but it can't hurt to repeat it. As someone who's been a poster child for Herceptin (been on it since '98 and holding...) -- I was always on Herceptin w/500 cc's saline. I drink lots of water ev single day. 10 glasses+. Flush toxins. Hydrate. Good for skin that is dry, nourishing. Once a new pharmacist gave me 250 cc's. I looked at the bag as they went to hang it on my pole and questioned its' different size. They checked. 250 cc's is the standard recommended protocol. That day, after Vitamin H I felt immediately very light-headed, shaky, weird, super fatigued. So since then I demand, and they accomodate my habit, 500 cc's. Swear it helps!
WHAT IS FEC???????
Hope every one does well, gets their butt into stable territory and stays there. Hope I can keep on keeping on. Much love... ANDI
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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06-09-2007, 06:09 PM
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#20
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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I took in 6 rounds of TCH which I finished May 11th. Now I am on the 3 week schedule of heceptin. Being on herceptin is a BREEZE compared to the chemo. Whew!!! I will be on it until January 2008. I feel pretty good and excercise daily. I also started CoQ-10 as of today. I don't notice any noticeably side effects from the herceptin. I think the side effects I do have are residual from the chemo.
harrie
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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