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01-15-2011, 09:16 PM
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#21
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Re: Help! Brain mets besides lung mets
OK, I understand how confusing this would be... but if it helps, a similar plan is how I approached it... successfully for 18 months. I did Tykerb/Xeloda first with very close monitoring. (MRI at month one, then when that one looked good, an MRI 2 months later, then when that one showed shrinkage, an MRI 3 months later showing that they were no longer active, and then continued every 3 months for 18 months... until my TMs started to rise and my 3 month MRIs showed 5 of them had woken up again). I started with 7 mets of varying size between punctate size and 9mm.
At the point that 5 of them woke up and showed activity on MRI, we went in and did sterotactic IMRT on them and zapped them into oblivion. A year later, one more woke up, and we zapped it. I switched from Tykerb/Xeloda to Tykerb/Herceptin.
Just make sure you push for the Xeloda w/ the Tykerb if they want you to try this plan, and make absolutely certain that they MRI/monitor her brain extremely closely at the 1 month interval, until it shows positive results from the Tykerb/Xeloda, and then cautiously move to 2 or 3 month MRIs.
__________________
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."
Last edited by hutchibk; 01-15-2011 at 09:25 PM..
Reason: add info
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01-16-2011, 07:11 AM
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#22
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Senior Member
Join Date: Oct 2009
Posts: 84
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Re: Help! Brain mets besides lung mets
Brenda - so you feel the Xeloda is the secret to success in the Tykerb/Xeloda combo rather than the Tykerb alone? My best to you
Joyce
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01-17-2011, 04:24 PM
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#23
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Re: Help! Brain mets besides lung mets
Not necessarily, but I think it's the best starting point with Tykerb. I don't know that it's the key, and I am not qualified to say, but I know that Tykerb was approved in combo with Xeloda first, so that's what years of trials yielded as a very synergistic combination... and Xeloda works to keep the rest of the body in check as well.
__________________
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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01-17-2011, 04:38 PM
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#24
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Senior Member
Join Date: Oct 2009
Posts: 84
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Re: Help! Brain mets besides lung mets
I know that Tykerb was approved in combo with Xeloda for brain mets but I can't seem to find out WHY it had to be in combo w/Xeloda. Does anyone here know? Is it because the Xeloda seems to boost the Tykerb to make the Tykerb work better on the brain or is it because it is metastatic disease and they wanted something to work on both the body and the brain? My best to you all
Joyce
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01-17-2011, 10:22 PM
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#25
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,809
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Re: Help! Brain mets besides lung mets
Karla,
Dr. Yu has a very impressive resume according to the information provided by the hospital. http://www.cedars-sinai.edu/Bios---P...n-S-Yu-MD.aspx
Novalis TX is a new technology of SRS and is more precise and focused (with less side effect) than either Cyberknife or Gammaknife.
Joyce,
Tykerb has always been given along with Xeloda. There are some trials going on right now on giving Tykerb without Xeloda (such as the one combining Herceptin and Tykerb) But physicians are not going to change the protocol until getting those trial results confirmed.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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01-18-2011, 06:20 AM
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#26
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Senior Member
Join Date: Oct 2009
Posts: 84
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Re: Help! Brain mets besides lung mets
Hi Jackie - My daughter's onc has just prescribed Tykerb WITHOUT Xeloda! That's one reason I was asking the question b/c I too have always read Tykerb was prescribed WITH Xeloda, but I can't find out WHY and if Tykerb by itself will work on brain mets such as my daughter has. I hate to see her waste time on Tykerb alone if it isn't going to work without Xeloda! It such a scary situation. My best to you
Joyce
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01-18-2011, 07:42 AM
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#27
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Senior Member
Join Date: Jul 2009
Location: Sardegna, Italy
Posts: 362
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Re: Help! Brain mets besides lung mets
Kavy -
Sorry I am a bit behind reading on the site and just saw this. I am hoping you are doing okay --- haven't seen an update for what you are doing for sure - only questions on the doctors on the proceedures ....
When you can give us an update.
Thanks - and hang in there! Karen
__________________
Karen Wheelhouse Age: 46
Facebook id: Karen Wheel
2-09 – Age 44 -Biopsy-Cancer
3-09 – Right Quadrantectomy. Clear margins.
3 lymph nodes taken - all clear
Tumor results: Stage 1, 1.5 cm, Her2 +++
Est positive 80% - Prog 10% - Ki67 postive 30%
4-09 – Became a vegan! pH balance of body - cancer can't grow in neutral pH!
4-09 Started Herceptin & Chemo (9 weeks of Navelbine *)
* FYI - when coupled with Herceptin has the same results as more toxic chemo. No brainer!
8-09 - 30 RADS
9-09 - Said NO to hormone therapy
4-10 Finished Herceptin!!!!
7-10 PET Scan & other exams .... All clear! YIPPEE!!!!
11-10 Breast, organ Ultrasounds and lung x-rays all clear no changes ... NED!
2-25-2011 --- 2 years from surgery and NED!!!!!!
7-2011 Clear bone scan and full body and head MRI! NED! NED! NED! ;-)[/SIZE]
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01-19-2011, 10:13 PM
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#28
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Senior Member
Join Date: May 2006
Posts: 157
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Re: Help! Brain mets besides lung mets
Hi, everyone,
Sorry for taking so long to update.
I got a call from Stanford, and they said i have to remove the tumor before I do Cyberknife. What a disapointment. I saw a neurosurgeon yesterday, and he said he will remove both tumors (cerebellum and occiptal lobe), so I will have a craniotomy next week, I don't know the date yet, then Gamma Knife a few weeks later to zap the tumor beds and another small tumor.
I'm still getting used to the idea. I know that Joan, Barbara, Stephen and Christine know how I feel. Any advices, suggestions for before or after the surgery?
Thanks again for your help. I feel blessed to be part of this beautiful family.
Joyce, I'm sorry your daughter couldn't get Xeloda with Tykerb. I can't believe her doctor didn't give to her. Can't you change oncologists? What about Temador? Praying that she gets the right treatment to help her.
Grace, how are you doing after the Gamma Knife?
Love to all,
Karla V.
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01-19-2011, 10:42 PM
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#29
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Help! Brain mets besides lung mets
Sorry Carla -
But I do NOT understand why they have to remove those tumors BEFORE they do Gamma Knife. I had ONLY Gamma Knife to the tumors. My tumor in my cerebellum was 3 cm, so size was not an issue here.
CourtneyL has had something like 18 spots treated with targeted radio surgery now. Never any open surgery. It would be nice to have a more complete answer as to why you can't just have the Gamma Knife.
This is much less disturbing to the rest of your brain, and easier on you altogether!
Brenda has also only treated the spots without any open surgery. What is different about your tumors?
P.S. A friend of mine here just had cyberknife on 4 spots in her brain and that is the end of it. No GK to tumor bed or whatever.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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01-20-2011, 12:31 AM
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#30
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,809
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Re: Help! Brain mets besides lung mets
Karla,
I've had a brain tumor surgery in 1990 that took 23 hours and three 'shots' of Gamma-knife radiosurgery in 2001, so I'm generally not worried too much about surgeries involving the brain. It will take some time to recover, but recover you will.
However, a surgery involving the cerebellum can be risky sometimes because the area is the 'life center' responsible for regulating our breathing and other 'vital' functions.
Your neurosurgeon sounded like an experienced veteran in this particular area. I remember how anxious I was waiting for my 'craniotomy'. I hope you have plenty of support at home.
Remember to get plenty of rest (take a deep breath whenever you are feeling anxious) and eat well.
Sending you good vibes.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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01-20-2011, 05:49 AM
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#31
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Senior Member
Join Date: Oct 2009
Posts: 84
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Re: Help! Brain mets besides lung mets
Hi Karla - Lots of people here are pulling for you so hang in there. I'm sure things will work out. As to my daughter not getting the Xeloda w/the tykerb - she was denied the Tykerb b/c it wasn't written with the Xeloda!! (I had to laugh to myself on this one.) So now the onc is going to write it with the Xeloda (can you imagine?). She did try Temodar previously with Avastin but it didn't work unfortunately. If the Tykerb doesn't work then she will have SRS. I pray the Tykerb works so that we have another option for the future. Let us know how everything turns out for you. My best to you
Joyce
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01-20-2011, 01:04 PM
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#32
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Senior Member
Join Date: Jul 2010
Posts: 42
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Re: Help! Brain mets besides lung mets
Hi Karla,
I understand how anxious you are and I would be the same. However, I read so many good stories about craniotomy on this and another site; plus, I know a lady who had craniotomy on Jan. 11 and she was up and walking by Jan. 12. She recovered so well and were sent home right after post-surgery MRI.
Joyce, I am happy to know your daughter's doctor finally agreed to give her X/T. Similarly, my doctor reluctants to give me Tykerb. I will ask him again when I see him on 26th.
My Gamma knife went well. I updated my info on my old thread. My rad onc said no steroid needed; so, I am taking some Bosewalli just in case. I have been feeling good and all three tumors were treated.
Grace
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01-20-2011, 04:47 PM
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#33
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Senior Member
Join Date: Oct 2009
Posts: 84
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Re: Help! Brain mets besides lung mets
Grace that's great! Glad the SRS went well. Hope you can get the Tykerb too! My best to you
Joyce
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01-20-2011, 10:32 PM
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#34
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Re: Help! Brain mets besides lung mets
Hi Joyce... so glad the doc is being forced to write the Tykerb w/ Xeloda. I talked to an onc today who I really respect and he was concerned about the way I described your daughter's situation... he said there is a synergy in the combo that is necessary for the best possible result.
Very good news Grace... please keep us posted Karla!
__________________
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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01-21-2011, 07:09 AM
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#35
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Senior Member
Join Date: Oct 2009
Posts: 84
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Re: Help! Brain mets besides lung mets
Brenda - Thanks for doing that. What I'm tryng figure out is if they recommend the Tykerb/Xeloda combo because it works good on the brain or b/c it works good on the body mets? Supposedly tykerb works on the brain but I see no indication that Xeloda does. Anyone know? My best to you
Joyce
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01-22-2011, 01:48 AM
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#36
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Senior Member
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
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Re: Help! Brain mets besides lung mets
I think it is supposed to be good for brain in combination with Tykerb. Rich posted a really good review article about brain mets last year which has a section on chemos as well as radiation and surgery. I think I found it when I searched "whole brain radiation" but I think "brain metastases" will bring it up too. Hope the combination works for your daughter.
Trish
__________________
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004 6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006 oopherectomy, Arimedex
12/2006 liver mets largest 9cm
1/2007 Herceptin,
3/2007 Taxol + Herc
1/2008 Herc alone
4/2008 Multiple bone mets,Zometa
7/2008 Herc + Gemcitabine
8/2008 Herc+Navelbine/vinoralbine
10/2008 Herc+Carboplatin+Taxol
12/2008 Tykerb+Xeloda
2/2010 Herceptin + trial drug
5/2010 Herceptin+Tykerb
8/2010 Tykerb+Abraxane
9/2010 Abraxane
12/2010 Abraxane+Tyk+Herc
4/2011 Tyk+Herc+Femara
6/2011 Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011 Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011 Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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01-22-2011, 09:42 AM
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#37
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Senior Member
Join Date: Oct 2009
Posts: 84
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Re: Help! Brain mets besides lung mets
RICH if you see this post could you send me the link to what Trish is referring to? Thanks! Trish thank you too. My best to you
Joyce
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01-22-2011, 04:22 PM
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#38
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,809
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Re: Help! Brain mets besides lung mets
Joyce,
I think this might be the one Trish's talking about :
http://her2support.org/vbulletin/sho...asis+radiation
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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01-22-2011, 05:53 PM
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#39
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Re: Help! Brain mets besides lung mets
Miscellaneous info I have been able to drum up:
http://cpharm.vetmed.vt.edu/VM9096/handout.htm
under anti-metabolites (fluorouracil is the infusion/Xeloda is the pill... they are the same drug)
......................................
In chemistry, weights are measured, not in kilograms, but in Daltons. In fact, it turns out that only molecules that have a molecular weight smaller than 500 Daltons can reliably get through the Blood Brain Barrier. Now a molecular weight of 500 Daltons is not very big. Water has a molecular weight of 18 Daltons, while insulin is up around 5,000 Daltons. Viruses (with molecular weights in the millions and billions) are a heck of a lot bigger than this, and bacteria are much bigger again. So in general it's rare for big chemicals, viruses and bacteria to be able to cross the Blood Brain Barrier and get into the brain.
xeloda (Capecitabine) molecular weight - 359.35
.............................................
http://professional.cancerconsultant....aspx?id=41058
Study participants had previously been treated with Herceptin, cranial radiotherapy, and Tykerb monotherapy. All patients in the current analysis received treatment with Tykerb plus Xeloda after experiencing cancer progression on Tykerb monotherapy.
- 20% of patients experienced at least a 50% reduction in measurable brain metastases.
- 37% of patients experienced at least a 20% reduction in measurable brain metastases.
- Side effects of treatment included hand-foot syndrome (grade 1 or 2 in 37% of patients and grade 3 in 8%); diarrhea (grade 1 or 2 in 34% of patients and grade 3 in 4%); and nausea (grade 1 or 2 in 22% of patients and grade 3 in 8%).
__________________
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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01-22-2011, 06:11 PM
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#40
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Senior Member
Join Date: Oct 2009
Posts: 84
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Re: Help! Brain mets besides lung mets
Jackie and Brenda - Thank you for the info! My best to you
Joyce
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