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04-18-2015, 09:34 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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Cancer in Spinal Fluid - given 6 months
I had an MRI on Fri the Onc said that my cancer has spread to the spinal fluid and told me I have about six months. I feel fine no symptoms of what they are telling me. Anyone know anything about this??? Clinical trials, websites, experience?? I am dazed ans confused. A few weeks ago everything was going great then BAM - you have 6 months WOW. Need some feedback and prayers please
__________________
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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04-18-2015, 10:33 PM
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#2
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Re: Cancer in Spinal Fluid - given 6 months
It sounds like you are saying that you have leptomeningeal metastases. (You did not specify what the MRI was of)
There are several here who have done well on intrathecal herceptin ie, herceptin given directly into the cerebrospinal fluid.
Rolepaul is very knowledgeable about the trials going on ---I hope he spots this soon as his info is the most complete and up to date I would think.
His wife was also given only months to live and has done well for years now.
Try to private message him if he does not respond soon.
All the best,
Lani
PS while you are waiting, try this 10 pg long thread: http://her2support.org/vbulletin/sho...eal+metastasis |
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04-19-2015, 06:27 AM
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#3
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Senior Member
Join Date: Jan 2012
Posts: 362
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Re: Cancer in Spinal Fluid - given 6 months
I am so sorry. I don't know of any trials but I just wanted to reach out and send you a cyber hug and let you know you are in my prayers
__________________
DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy
01/07/2019 Mastectomy and expanders put in
3/22/2019 Vtach, almost died. Cause unknown.
7/22/2019 New perky boobs put in
7/21/2020 Off of all drugs but a baby aspirin because of the stroke in 2018.
www.mychemobag.org
www.facebook.com/mychemobag
8 YEARS NED
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04-19-2015, 07:12 AM
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#4
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Senior Member
Join Date: Jul 2013
Location: Hot Springs, South Dakota
Posts: 158
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Re: Cancer in Spinal Fluid - given 6 months
Lani, leptomeningeal metastases is what I have - good to hear others have done well - need to hear from ladies that are out there. Thanks for the hug! europa
__________________
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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04-19-2015, 08:01 AM
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#5
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Senior Member
Join Date: May 2014
Location: San Diego
Posts: 411
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Re: Cancer in Spinal Fluid - given 6 months
I'm so sorry. My thoughts and prayers are with you. It really is hard to know what to say. I'm hoping that you will do as well as Rolepaul's wife.
Take care
__________________
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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04-19-2015, 08:34 AM
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#6
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Senior Member
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
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Re: Cancer in Spinal Fluid - given 6 months
Saygoon,
I texted Paul to visit the board. Hang in there, beauty.
Karen
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04-19-2015, 09:17 AM
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#7
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Senior Member
Join Date: Oct 2014
Posts: 293
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Re: Cancer in Spinal Fluid - given 6 months
I'm so sorry to hear this. Doctors are often wrong and I hope this is one of the cases. I don't have anything else to add except that you're in my thoughts and prayers.
Sending cyber hugs
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04-19-2015, 10:21 AM
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#8
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Senior Member
Join Date: Nov 2014
Posts: 83
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Re: Cancer in Spinal Fluid - given 6 months
Dear Saygoon,
I also don't know what to say but hoping that someone with experience checks in. Has your onc talked about the omaya or lumbar reservoir? Hoping you have a lot of support and love around you.
__________________
June 2013 DX Stage 3 Idc, rt breast, er/pr-, her2+++
PET/CT/Brain MRI clear
ACTHP until Dec 2013
BMX Dec 2013
28 Rads Feb 2014
Exchange surgery June 2014
Herceptin end Sept 2014
Headaches start Oct 2014
CT body clear Nov 2014
Brain MRI 4 lesions Nov 2014
SRS via LINAC in Dec 2014
Rt side infection, hospitalized, lost right implant on Jan 1, 2015
Jan 14 2015 MRI brain lesions shrinking
Jan 27 2015 Re-start herceptin every 3 weeks
Feb 2015 CT/PET Body clear
Re-start Lymphedema treatment April 2015
Breast MRI clear April 2015
Brain MRI April 2015 - shows everything stable, nothing new (whew)
CT scan June 2015 - clear
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04-19-2015, 10:31 AM
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#9
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: Cancer in Spinal Fluid - given 6 months
Hugs. I'm so sorry. That is a horrible thing to hear. I would definitely get a second opinion as soon as you can. Everyone is different and perhaps the intrathecal Herceptin could be a viable option. I don't have experience with spinal mets, but I am stage IV and was once told I had about three months to live. I was in the intensive care unit and the nurses were arranging transfer to the Hospice wing. I asked for a second opinion, and a radiation oncologist came to visit me at the hospital. Long story short it's now over 2 years later. Doctors can be wrong sometimes and miracles can happen. I will be sending lots of prayers and positive energy.
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04-19-2015, 11:29 AM
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#10
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Senior Member
Join Date: Apr 2011
Posts: 403
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Re: Cancer in Spinal Fluid - given 6 months
Dear Sagoon, my thoughts are with you ! Definitely talk to your doctor if you can get radiation and IT herceptin. It can be done after a reservoir under your scalp skin like a port. Don't lose hope !
__________________
1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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04-19-2015, 01:30 PM
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#11
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: Cancer in Spinal Fluid - given 6 months
Oh Saygoon. Just when you were starting to feel better. I'm so sorry, but more than that, I want to punch your onc in the nose.
As you have seen from reading the thread to which Lani linked, there is much hope for you. Now that Karen has sent up the flag, I'm sure that Rolepaul will check in soon.
In the meantime, just remember your doctor isn't Carnac and you are not a statistic.
Rhonda
__________________
2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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04-19-2015, 03:41 PM
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#12
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Senior Member
Join Date: Feb 2014
Location: Greenville, NC
Posts: 79
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Re: Cancer in Spinal Fluid - given 6 months
Saygoon,
I am sorry that you received this news. The doctor does not have a crystal ball. I am praying for you. Hang in there and fight hard!
Loren
__________________
Loren
11/3/13 mammogram age 50
11/27/13 follow up mammogram and right breast ultrasound. Radiologist showed me image of 3mm nodule. He said to wait 6 months for a follow up mammogram. I advocated for myself and requested a biopsy.
12/11/13 core biopsy with clip placed
1/6/14 Duke consult BC Treatment
1/30/14 partial right mastectomy, sentinel node biopsy 2 setinal nodes clear. 1.1 cm IDC, close margins.
3/13/14 met Dr Heather White in Greenville, NC. She is wonderful and my new oncologist.
3/18-19/14 Dr. White ordered pet scans, full body ct, bilateral MRIs and BRCA TEST.
3/20/14 5/15/14 chemo taxol/Herceptin 1x/week
3/25/14 port placement
4/17/14 BRCA2+
5/22/14 Herceptin only 1x every 3 was for a year. incomplete Taxol(neuropathy of hands and feet)
7/2/14 oopherctomy, salpingoopherectomy, hysterectomy at Vidante with Dr. Marie Rowe.
10/3/14 BMX/trams flap with Georgaide and Zenn at Duke.
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04-19-2015, 06:15 PM
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#13
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Senior Member
Join Date: Mar 2014
Posts: 46
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Re: Cancer in Spinal Fluid - given 6 months
Saygoon,
You are in my prayers and in my heart.
Peace and healing,
Cindy
__________________
Jan 2014 -mammogram, targeted mammogram, and ultrasound.
Feb 2014 -stereotactic biopsy (IDC, lobular growth pattern, grade 3, ER+ 30%, PR+ 1%, HER2+ 3+, ki67 10%), MRI - tumor up to 7cm, Lymph node biopsy - malignant.
Mar 2014 -port placement, chemo begins (TCHP)x6 every 3 weeks, Neulasta shots.
June 2014 complete chemo series, Herceptin only until Mar 15
Aug 2014 -Bilateral mastectomy with left axillary dissection (PCR in left breast, cancer cell found in lymph node).
Sept 2014 -radiation 28x
Oct 2014 complete radiation
Nov 2014 - begin Arimidex
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04-19-2015, 06:23 PM
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#14
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Senior Member
Join Date: Apr 2012
Location: Melbourne, Australia
Posts: 494
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Re: Cancer in Spinal Fluid - given 6 months
Saygoon,
Thinking of you and hope you are able to explore the treatment options that have been so successful for some others.
Best wishes..... Pam
__________________
Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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04-19-2015, 07:58 PM
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#15
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Senior Member
Join Date: Jan 2013
Location: Irvine, CA (Southern CA)
Posts: 414
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Re: Cancer in Spinal Fluid - given 6 months
Saygoon,
Like everyone else, I'm thinking of you and hopeful you receive some other options very soon. There are a lot of trials going on; if you have the insurance and resources, please push hard for more options because they are out there!
-Julie
__________________
Julie
Live in Orange County, CA
Diagnosed with DCIS Oct. 2012
Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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04-19-2015, 09:12 PM
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#16
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Senior Member
Join Date: Jul 2013
Location: Hot Springs, South Dakota
Posts: 158
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Re: Cancer in Spinal Fluid - given 6 months
Thanks everyone for the words of encouragement. I did get ahold of Rolepaul and waiting for more info. Now that the shock is wearing off a little I am definitely going for IT Herceptin and reservoir or any other option that comes my way/ Keep the prayers coming ladies Im still crazy!!! But your support keeps me strong
__________________
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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04-20-2015, 08:11 AM
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#17
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
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Re: Cancer in Spinal Fluid - given 6 months
Karen, thanks for giving me a heads up. I am commuting from Denver to Omaha weekly for work. I got a private message and tried to help Saygoon get up to speed on some of the potential solutions to this problem. Overall, this is not a good outlook if you look at results from three or more years ago. Since then, there has been an understanding that higher dose Herceptin administered directly into the brain or CNS cavity has had some pretty positive results. Susan was not able to survive her disease, but it is appears that the higher dose has resulted in a number of women having their disease stabilize or go into remission in the CNS. Please keep sending people my way as I am in contact with Genentech people that are working on this issue.
As I said in the email to Saygoon, kick in the shin any medical person that says you have six months to live or to make end of life plans. This is a bad situation, but it is one that HER 2+ women with CNS have the right to get treated correctly. I know that how hard it is to change the medical community, but it starts with everyone that has this problem saying they will not accept death as the only alternative.
I solve problems for a living. I solved this problem for my wife for her life. She is in full remission in her spine for 3 years as of this May. The medical community does not know why it works, while I did not know why it would not.
Paul
I hate to lose. Never give up.
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04-20-2015, 02:19 PM
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#18
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Cancer in Spinal Fluid - given 6 months
Paula, firstly sending (((((hugs)))) to you as I sadly have no advice to offer but I'm so happy that RolePaul has been in contact with you and know you have a great advocate there so hope his positivity and advice will help you greatly and know we're all behind you. xx
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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04-20-2015, 04:14 PM
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#19
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Senior Member
Join Date: Dec 2013
Posts: 1,045
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Re: Cancer in Spinal Fluid - given 6 months
Saygoon, I just wanted to say too that I am thinking of you ... we are so fortunate to have the wonderful people like Rolepaul, Karen, etc on this site ... like Julie says, there ARE options out there.
Tell that doc who told you 6 months to GO POUND SAND!
Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.
Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".
Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.
Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.
Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.
Nov 25, 2013 Begin 6 rounds TCH.
March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!
March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.
March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)
April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm
May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)
June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia
Nov 17, 2014 FINAL Herceptin!
Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.
Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.
Dec 17, 2014 Port is OUT!
January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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04-20-2015, 04:43 PM
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#20
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: Cancer in Spinal Fluid - given 6 months
As Rolepaul and others have said, the first thing to do is discredit what the onc has told you How dare he not offer options and hope. Another reason why second opinions, and this board, are so valuable!
Keep the faith
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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