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02-14-2014, 05:43 PM
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#1
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Senior Member
Join Date: Jul 2013
Location: Hot Springs, South Dakota
Posts: 158
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Starting TDM1
My bone mets have now spread to my pelvic bone. Onc is taking me off the AI for now and starting me on TDM1 added to my Herceptin. Would like some feedback from those who have or are on TDM1 What has been your experience with this. Comments, suggestions, jokes????
__________________
Paula T. (saygoon means dog, yes I am Native)
DX March 2012
Stage IV w/ 5 bone mets to spine 2 on ribs
Herceptin, Zometa, Taxotere and Anasterole and of course radiation
2/14/2014 2 mets on pelvic bone
Stop Anasterole continue on Herceptin and Zometa start radiation (again)
2/24/2014 start T-DM1 continue Herceptin and Zometa
4/28 more radiation that brings total to 5 (10 days ea) - I think I will soon glow in the dark....
6/01/2014 Great news! Rib mets gone, 4 of 5 spine mets showing new bone growth and pelvic mets shrinking.
8/28/2014 T11 on spine is being stubborn started Perjeta, Herceptin, Zometa and Taxol - goodbye hair!
9/04/2014 Tomo therapy - pain finally gone
1/3/2015 - starting New Year out as still stable. Feeling positive
2/23/2015 - problems with left leg, bone met flaring up - MORE radiation Whew!
2/24/2015 Stress fracture in right side of pelvic - (great just great) back to wheelchair then walker then.....
2/26/2015 Off Taxol!! Still on Perjeta, Herceptin and Hormone Blocker starting to feel a little more human.
4/10/2015 Cancer has spread to spinal fluid - not sure where I go from here
6/29/2015 Omaya Port placed,begin IT Herceptin on 7/7/2015
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02-14-2014, 07:29 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Starting TDM1
Perhaps you should add a different AI such as Aromosin. Those that failed on a nonsteroidal AI (Arimidex or Femara) did well on Aromosin or Faslodex but the Faslodex is injected while Aromosin is a daily pill just like Arimidex. ER+ cancer loves the bones.
http://www.ncbi.nlm.nih.gov/pubmed/18316794
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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02-14-2014, 07:30 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Starting TDM1
Also, the study was only using anti hormonals so adding other things as you are is only a plus.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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02-16-2014, 07:00 AM
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#4
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Starting TDM1
Hi Paula T.,
Here's one of the recent threads related to T-DM1 which I located by doing a 'Search':
http://her2support.org/vbulletin/sho...ighlight=T-DM1
If you post on that thread, members who posted on that thread will get a notice (unless they had chosen not to in their registration) and can respond to your questions.
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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02-16-2014, 09:45 AM
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#5
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: Starting TDM1
Saygoon,
Ouch! So sorry about your bones. Wishing for you that TDM1 kicks those bone mets to the curb.
I like Becky's suggestion about switching to another treatment that address the ER positive with the TDM1/Herceptin. Don't give that cancer any opportunity to survive - it is time for it to stop!
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02-16-2014, 07:28 PM
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#6
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: Starting TDM1
my wife is doing great on t dm-1, over 3 yrs now. she has been ned over 2 yrs. we have spoken w/ some who are as much as 5 yrs stable or ned. Lorraine is having some liver issues now due to chronic irritation from the drug. varices or swollen veins , around liver , spleen. 3 yrs is along time for any chemo. they do not seem to be acute issues - had a biopsy and will do endoscopy in march. we reduced dose again , to 2.7. originally dose was 3.6, but low platelets led to reducing to 3.0.
most t dm-1 pts get fevers , chills at first . they can be very uncomfortable. for many , incl . my wife , the fevers stop after several tx.'s as body adjusts. for most its more tolerable than older style chemos - no hair loss, usually no mouth sores. its targeted to the abnormal her2 cancer cells only. it saved my wifes life, and the qol is relatively great. she does have low platelets , but reducing dose helped , along w/ diet. she feels her foot neuropathy has worsened on t dm-1 too. all s/e we can live with , figuratively and literally. there are t dm-1 (kadcyla) discussions on Inspire , advanced bc community also . For us a wonderful, miracle drug . my wife and I have an advocacy group , Our Her2Cancer Struggle and a website , stageivsurvivor.webs.com. God Bless, Heal.
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02-17-2014, 04:25 AM
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#7
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Senior Member
Join Date: Jul 2013
Posts: 260
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Re: Starting TDM1
Dear Saygoon
I don't know anything about TDM-1 but I am hoping the best for you and that the mets aren't too painful.
Lots of hugs
Aussie Girl
__________________
31mm Infiltrating duct carcinoma
Grade 3, ER/PR-, HER2+, Neg Sentinel nodes x 5
49mm field of DCIS
17 June '13: Screen detected impalpable mass, Mammogram neg, US.
25 June '13: Diagnosed after multiple biopsies and MRIs
28 June '13: Left lumpectomey
4 July '13: Left Mastectomy
12 August '13: Commenced TCH chemo
Mid December '13 : TCH finished. Herceptin continuing three weekly.
4 August 2014- Herceptin infusions finished.
END OF THERAPY - YAY!
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02-19-2014, 06:01 PM
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#8
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: Starting TDM1
good news for us. preliminary report on Lorraines' liver shows no cirrhosis and good outflow pressure. so seems like a lesser problem and reducing dose should help.
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02-19-2014, 06:12 PM
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#9
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Senior Member
Join Date: Jul 2013
Location: Hot Springs, South Dakota
Posts: 158
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Re: Starting TDM1
thanks for the insight everyone! Just finished my second radiation on the pelvic bone and I'm already getting some relief. Hopefully by this weekend it will be good - bye wheel chair. The pelvic lesion was pressing on the sciatic nerve so I haven't been able to walk for about three days.
My biggest fear is always what kind of side affect will the new medication bring but so far Ive heard alot more good than bad.
Glad to hear your news Phil and I will check out you website.
__________________
Paula T. (saygoon means dog, yes I am Native)
DX March 2012
Stage IV w/ 5 bone mets to spine 2 on ribs
Herceptin, Zometa, Taxotere and Anasterole and of course radiation
2/14/2014 2 mets on pelvic bone
Stop Anasterole continue on Herceptin and Zometa start radiation (again)
2/24/2014 start T-DM1 continue Herceptin and Zometa
4/28 more radiation that brings total to 5 (10 days ea) - I think I will soon glow in the dark....
6/01/2014 Great news! Rib mets gone, 4 of 5 spine mets showing new bone growth and pelvic mets shrinking.
8/28/2014 T11 on spine is being stubborn started Perjeta, Herceptin, Zometa and Taxol - goodbye hair!
9/04/2014 Tomo therapy - pain finally gone
1/3/2015 - starting New Year out as still stable. Feeling positive
2/23/2015 - problems with left leg, bone met flaring up - MORE radiation Whew!
2/24/2015 Stress fracture in right side of pelvic - (great just great) back to wheelchair then walker then.....
2/26/2015 Off Taxol!! Still on Perjeta, Herceptin and Hormone Blocker starting to feel a little more human.
4/10/2015 Cancer has spread to spinal fluid - not sure where I go from here
6/29/2015 Omaya Port placed,begin IT Herceptin on 7/7/2015
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02-24-2014, 09:47 PM
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#10
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Senior Member
Join Date: Jul 2013
Location: Hot Springs, South Dakota
Posts: 158
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Re: Starting TDM1
Started T-DM1 today so far so good! Last radiation to my pelvic mets this morning. Feel a little tired but that could also be because of the horrible weather this morning. We drive 50 miles one way to treatment and driving in the snow was a little stressful for my husband. So.... onward and upward. Also my pain level was really tolerable today so YAY! If the snow we have had since Oct ever clears Im going to jump around my yard! LOL!
__________________
Paula T. (saygoon means dog, yes I am Native)
DX March 2012
Stage IV w/ 5 bone mets to spine 2 on ribs
Herceptin, Zometa, Taxotere and Anasterole and of course radiation
2/14/2014 2 mets on pelvic bone
Stop Anasterole continue on Herceptin and Zometa start radiation (again)
2/24/2014 start T-DM1 continue Herceptin and Zometa
4/28 more radiation that brings total to 5 (10 days ea) - I think I will soon glow in the dark....
6/01/2014 Great news! Rib mets gone, 4 of 5 spine mets showing new bone growth and pelvic mets shrinking.
8/28/2014 T11 on spine is being stubborn started Perjeta, Herceptin, Zometa and Taxol - goodbye hair!
9/04/2014 Tomo therapy - pain finally gone
1/3/2015 - starting New Year out as still stable. Feeling positive
2/23/2015 - problems with left leg, bone met flaring up - MORE radiation Whew!
2/24/2015 Stress fracture in right side of pelvic - (great just great) back to wheelchair then walker then.....
2/26/2015 Off Taxol!! Still on Perjeta, Herceptin and Hormone Blocker starting to feel a little more human.
4/10/2015 Cancer has spread to spinal fluid - not sure where I go from here
6/29/2015 Omaya Port placed,begin IT Herceptin on 7/7/2015
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02-25-2014, 08:53 AM
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#11
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: Starting TDM1
Godd Luck !1 you will ost likely get afever, chills around day 3. fatigue. fever shold go away after afew days. after several doses for many the body adjusts and the fevers lessen. Lorraine still gets fatigue, some increasse in uncomfortable foot nueropathy, low plats, liver irritation . sounds lika lot , maybe, but over all is soooo much better than previous chemos. She is running some - wants to do a 5k in may. looks like she did in 2012 when photos at demo were taken , shown on www.stageivsurvivor.webs.com. miraculous drug ! God Bless and Heal ! |
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