| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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07-07-2009, 09:35 PM
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#1
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Senior Member
Join Date: Jun 2009
Posts: 343
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Herceptin/Tykerb
I'm a new member and was recently diagnosed with Her2, not hormone receptive, Stage II. I'm still learning a lot and not familiar with all the terms I've read. I'm doing a clinical trail at Vanderbilt and started Herceptin/Tykerb 2 weeks ago. Yesterday I had surgery to get the port, lymph node biopsy and another breast biopsy (part of the trail). During surgery they did an ultrasound and it showed the tumor is shrinking!! This was great news after only 2 weeks. I have 2 tumors that are possibly one big tumor but don't that yet for sure. I will find out the results of the lymph node biopsy in 5 to 7 days but was so excited that the tumor is shrinking--I needed some good news. This is a great group and I'm so happy I found it--thank you all for sharing your stories and providing hope to all of us.
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07-08-2009, 10:09 AM
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#2
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Senior Member
Join Date: Dec 2006
Posts: 415
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Hi~
Welcome to our little family, but as we always say, wish we could have met under different circumstances.
Thank you for sharing your wonderful news! Celebrate! You deserve it! The first phases of diagnosis, surgery and treament are so stressful, frightening & chaotic. I truly believe a positive response to treatment for any one of us is a victory for ALL of us.
Please keep us posted about the lymph node bx (biopsy) results. Keep in mind, even if you do have disease in the node(s), it too is shrinking, shrinking, shrinking away like the primary tumor!
I'm so encouraged by your response to Tykerb/Herceptin and will be anxiously looking for more news about this combo. I've recently switched from Herceptin (+various chemos) to Tykerb +Xeloda, as it seems I had become desensitized to herceptin. I'm hoping to be able to drop the Xeloda & switch back to Herceptin with my Tykerb.
Welcome again. You'll find much support, compassion, wisdom, guidance and a soft place to fall when you need it or a swift kick of encouragement, if that's in order!
Keep the Faith~
Jml
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07-08-2009, 08:44 PM
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#3
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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What wonderful news! Glad your tumors are shrinking already.
There is a 'long-time survivors' thread you might want to read (use the 'search' button on the gold bar on top of the board)first.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
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Last edited by Jackie07; 07-08-2009 at 08:49 PM..
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07-08-2009, 09:18 PM
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#4
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Senior Member
Join Date: May 2006
Posts: 3,142
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Herceptin/Tykerb
Wow !!!!!! That is really good news !!!!!! Keep up the good work.
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07-09-2009, 04:17 PM
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#5
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Senior Member
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
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Glad you are experiencing positive results so quickly. I too am on Herceptin/Tykerb. So far so good. Let's keep in touch.
Hugs, Nancy L
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07-20-2009, 08:56 PM
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#6
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Senior Member
Join Date: Jun 2009
Posts: 343
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Tumor continues to shrink
My tumor that started out at 8cm is now 5x3 cm after 4 weeks of herceptin/tykerb. I've been feeling really fatigued the past 2 weeks and labs showed my potassium was really low so I had a drip that took 2 hours last week plus potassium pills I take twice a day. They said the drugs can cause that but I also take a water pill for my b/p so they had me discontinue that but I still take my other b/p pill. Has anyone experienced this potassium problem? It was amazing how much better I've felt after getting the drip. Didn't feel too well today but still better than I had been. They will check my levels again this Thursday (treatment day). I haven't had the rash I've seen many have talked about but did develop sores in my mouth. I'm using a mouth rinse called Prevention which was impossibile to find in Nashville. My local Walgreens did order it for me. The doctor also gave me some mouthwash the pharmacy labeled "majic mouthwash" which numbs your entire mouth. It's not fun but it does help with the pain. The sores seem to be getting better but I have to be careful what I eat-definitely no citrus.
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07-20-2009, 09:01 PM
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#7
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Senior Member
Join Date: Jun 2009
Posts: 343
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Lymph Nodes
Forgot to post that they did find a speck of cancer in my lymph nodes so I will have those removed when I have the mastectomy the middle of September. I do the trail for 3 months, then surgery. I am scared about the surgery but am trying to take this one day at a time.
Thanks to all of you for your words of encouragement
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07-28-2009, 05:14 PM
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#8
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Senior Member
Join Date: Aug 2008
Location: San Francisco
Posts: 260
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Re: Herceptin/Tykerb
It is a great sign that you are responding so well to the Herceptin/Tykerb! That tumor doesn't stand a chance! Thinking of you and sending prayers your way!
__________________
4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.
Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial
Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED
Send me a PM if you'd like to follow my journey on Caringbridge.
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07-28-2009, 10:09 PM
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#9
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Re: Herceptin/Tykerb
Fantastic news about your success in the trial. Try not to be too afraid of the surgery... I had not been in the hospital since I was born (a looonnng time) when I had my mastectomy and reconstruction, so I was pretty apprehensive, too... but all went really well. Just follow your surgeons orders to the T when you get home and you should heal quickly and well. Keep us posted!
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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