HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 06-22-2019, 01:13 PM   #1
SoCalGal
Senior Member
 
SoCalGal's Avatar
 
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,599
Whack-a-mole next...

Welp...after 12 years of MBC and constant treatment, my slow progression has finally sped up. Latest PETscan showed mucho metabolic activity in sternum, manubrium and lungs.

BRAIN MRI
Brain MRI no bueno, 6mm fucker in right frontal, scheduled for True Beam zap next week. New words this month: intramedullary, meninges, meningeal, intrathecal, Ommaya reservoir, Rickham port, Buckingham palace (just wondered if you were still reading)...

SPINE MRI
C2 SPINAL CORD !!! has a lesion IN THE CORD !!! which points to Leptomeningeal disease. Sob sob sob. I decided to wait on the spinal tap because I'm not putting anything into my head at this time anyhow and the taps can be false negatives and I wanted to go dance Thursday night no do a spinal tap.

Will do whack a mole approach until I can gather more opinions and gather more wits. I got fitted for the head and face suffocation mask. Why the docs let me do that "fitting" without Ativan is a mistake they won't make again. Someone had the gall to say it's like a spa treatment! Yes, if the spa you attend has a 300 pound sweaty hot sumo wrestler sit on your face while they wipe you all down with ice water. I've been to many spa treatments in my lifetime, there's never been a spa MRI machine as part of the rejuvenation!

C2 cord lesion is also the reason I'm feeling random numbness on my right (unaffected) breast, arm pit, and creepy crawlies on my scapula. All right side.

C2 lesion due to be zapped via SBRT also next week - hoping like mad it doesn't cause a terrible side effect like PARALYSIS from the neck down and hope I don't drool while I'm unconscious from the scoop of Ativan I plan to swallow prior.

L1 is again crazy hot and since I just had rads in 2016 it is too dangerous for lower paralysis for rads again and no surgery either, too complicated unless risks of surgery outweigh risk of none. L1 is the cause of random numbness in groin, right tush, right leg, outside calf and bottom of foot.

But hey, what's a little Cancer Fire among friends?!?

There is so much uncertainty with regard to treatment and options.

Not sure I can put a reservoir in my head and pour in chemo. Not sure that intrathecal herceptin will suddenly work on cancer that is herceptin resistant, and how would my allergy reaction handle herceptin in my CNS? I am the course-of-least-resistance-girl, and none of that sounds good. Also on the forefront of my mind is that I DO NOT HAVE SYSTEMIC CONTROL. I just went back on Herceptin/xeloda and have no idea if that has had one iota of affect. Too soon to know.

I did look into the her2+ CAR T trial at City of Hope. I signed consent and will be on some list for some steps in the future. It's very early phase, slow cautious enrollment, and not sure again, on my herceptin allergy and inserting engineered trastuzamab into all my hopped up Tcells. I don't quite understand all the science, but I'm on a need to know intake for now, due to extreme emotional overload. And fear. And grief. And anxiety. And F-bombs.

I also signed Death with Dignity papers and got that started. Sorted out the important who wants what with my kids, while I'm still able to interject and add stories with these various pieces and dishes and jewelry and art. And now I know what I can give away to other friends and family.

I am not writing the ending but I do not wish to be caught off guard, somewhat paralyzed and unprepared.

The rads oncologist called me at 9:30 last night to say they scheduled me for Monday. I haven't really had time to deep obsess if this is the right place for the right procedure but have kind of made peace with my inability to figure out a different plan. These same people have been zapping me for the past 23 years. They must know their stuff. The last brain zap in 2008 got rid of the spot. I'm thinking he's had 10 more years of experience, so he can surely hit this new spot with similar success.

I'm not sure how hard I am willing to fight unless QOL can be reasonable. Time in and of itself it not significant. BUT time with reasonable QOL is worth the fight.

I welcome all input and ideas!
And with much gratitude to all my friends on here, old and new, friends still here and those in a different "place" your company on this journey has been priceless.
Love, Flori
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, to remove skin mets. Not able to get clear margins. So schedule another surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line – cut out, cut out, cut out. NED each time.
1/2006 Rads again, to scar line. NED.
3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 trial but then 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva. (premeds for Herceptin now)
Sept 2011 Tykerb, Herceptin, Zometa, Avastin. (switched back to Zometa, pet/ct bone mets seemed worse on Xgeva)
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST GAMMA ZAPPA continue HAPZ
APRIL 2013 - cancerversary 17 years from original diagnosis. 6 yrs stage 4.
"FAILED" PETscan on 4/2/13 (WTF)
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - NEWSFLASH:
6 YEARS POST GAMMA ZAPPA, 7 YEARS STAGE 4 and 18 YEARS FROM ORIGINAL DX! (CUCK FANCER)
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue Herceptin, PERJETA, xgeva. Adding back Avastin to see if lungs will go quiet
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1 and due for MRI brain check (check please!).
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down: CA15‐3=46.9 CEA=12.3 CA 27.2=79 SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YEARS STAGE FOUR!
July 2016 - continue HAP plus Xgeva. Not NED not DEaD.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
2017 I AM COMING FOR YOU!
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 most average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
SoCalGal is offline   Reply With Quote
Old 06-22-2019, 03:16 PM   #2
donocco
Senior Member
 
Join Date: Oct 2013
Posts: 396
Re: Whack-a-mole next...

SCG

A long shot, but I remember reading about long term control of metastatic pancreatic cancer using Low Dose Naltrexone (4.5mg at bedtime) combined with intravenous Alpha Lipoic Acid 600mg IV twice a week . Look at the protocol. I dont see anything with these drugs specific to pancreatic cancer. Low dose Naltrexone stimulates the production of a natural brain opiate called Met-Enkephalon and this compound is an immunostimulant.
You would have to find a doctor willing to use these things. Oncologists tend to be super conservative.

Paul
donocco is offline   Reply With Quote
Old 06-22-2019, 07:50 PM   #3
Lucy
Senior Member
 
Join Date: Oct 2014
Posts: 278
Re: Whack-a-mole next...

That's a lot to have to take in! It sounds like you got a lot of answers too. Not necessarily good answers but sometimes the knowing is better than speculating so that you can make informed decisions - like the QOL issues you mentioned. But it also sounds like it brings up a lot more questions too. I hate this disease! And I'm sorry you're having to deal with and go through all this.

Is perjeta part of your drug cocktail?

Sending cyber hugs, prayers and good thoughts your way.
Lucy is offline   Reply With Quote
Old 06-23-2019, 01:11 AM   #4
Pamelamary
Senior Member
 
Pamelamary's Avatar
 
Join Date: Apr 2012
Location: Melbourne, Australia
Posts: 470
Re: Whack-a-mole next...

Flori - hard to find words, but just keep dancing as long as you can.
Sending love and strength.....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.
Pamelamary is offline   Reply With Quote
Old 06-23-2019, 01:42 PM   #5
tricia keegan
Senior Member
 
tricia keegan's Avatar
 
Join Date: Nov 2005
Location: Ireland
Posts: 3,421
Re: Whack-a-mole next...

Flori, I wish I had words of wisdom and advice but can only send you my best wishes and love and I'm hoping this won't be as tough as it sounds.
__________________
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!
tricia keegan is offline   Reply With Quote
Old 06-23-2019, 04:23 PM   #6
StephN
Senior Member
 
StephN's Avatar
 
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,107
Wink Re: Whack-a-mole next...

Whack, whack, whack! Go after as many lesions as your team will engineer. Go shrink your tumor load.
I have never had intravenous Alpha Lipoic Acid, but I have taken a 300 mg tablet that also has 330 mg of biotin almost daily for many years. The container says it promotes Glutathione and antioxidant status. Some study I read about pointed me to this supplement.

You have my love and forever admiration for your "come and get me" attitude, along with "if you get me, you will be sorry."

Ned in your head, coming right up. YESSSSS.
__________________
"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.
StephN is offline   Reply With Quote
Old 06-23-2019, 04:50 PM   #7
Carol Ann
Senior Member
 
Join Date: Dec 2013
Posts: 1,044
Re: Whack-a-mole next...

Hi Flori, no words of wisdom or advice, everyone before me has already said everything so much better than I can. I am sending you all the love and strength I can. Like Pam says, keep dancing as long as you can.


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. :)
Carol Ann is offline   Reply With Quote
Old 06-24-2019, 09:24 AM   #8
Donna H
Senior Member
 
Join Date: May 2014
Posts: 243
Re: Whack-a-mole next...

Sometimes all you can do is "dance it out"..... Your spirit and fight are amazing. Love it! I don't have any advice or wisdom. Just know we are all thinking good thoughts and sending it your way.
Donna H is offline   Reply With Quote
Old 06-24-2019, 11:06 AM   #9
jaykay
Senior Member
 
Join Date: Oct 2012
Posts: 625
Re: Whack-a-mole next...

Aw, f__k, Flori! No words of wisdoms, only love and positive thoughts.
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
jaykay is offline   Reply With Quote
Old 06-24-2019, 11:37 AM   #10
Laurel
Senior Member
 
Laurel's Avatar
 
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 1,967
Re: Whack-a-mole next...

Welp. Leave it to you to disperse the worst damn news and still make me laugh! You should have been a comedy writer.

Well, f*#k, the news is shit and I can easily understand feeling dazed and unable to fully take the helm. I mean, where to steer the danged ship to keep it off the shoals? Wack-a-mole until you can find some systemic treatment is seemingly the only course.

I do not blame you for being loathe to pour crap into your CNS. Sheesh, sometimes I think these Oncs figure they can scare us to death rather than bother to treat us! You have the balls of 7 men, Flori, so if anyone can toe up to the line for intrathecal infusions, it's you. Still, I do not blame you for not relishing the idea.

Flori, please try to keep us posted. You know we are all here in your corner, scared with you and for you, and wishing we could DO something to pull you from the fire! I have to end now, because I cannot see through my tears. Just keep dancing in that fire as long as you can, my friend, as we pray for healing rains.
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

11 Years NED
I think I just might hang around awhile....

Laurel is offline   Reply With Quote
Old 06-24-2019, 01:09 PM   #11
donocco
Senior Member
 
Join Date: Oct 2013
Posts: 396
Re: Whack-a-mole next...

Flori

If you don't want anymore traditional treatment you could try one of the Alternative clinics in Southern California that treat cancer with diet and vitamins
that reduce inflammation. I know there is one in Costa mesa, but they exist in other cities in Southern California. I read the results of some of these treatment and have to admit Im impressed. Hope this helps a bit.

Paul.

Ps. Just an afterthought. As far as oral Lipoic acid goes it might be a good idea
to separate taking the Lipoic Acid from divalent metals like zinc. Lipoic acid appears to be a metal chelator. Believe it or not I reads this in Hulda Clarks book " a Cure for all Cancers. She used Lipoic acid quite frequently with her patients. After reading this I did some research on it and she was correct. The research on Lipoic acid indicated that it inhibits Nuclear Factor Kapa Beta which when activated acts in a very strong way to enhance the survival and growth of cancer cells. Interesting.
donocco is offline   Reply With Quote
Old 06-24-2019, 06:43 PM   #12
caya
Senior Member
 
caya's Avatar
 
Join Date: Jan 2007
Location: Thornhill, Ontario Canada
Posts: 2,303
Re: Whack-a-mole next...

Good luck Flori! Sending positive vibes and hugs!


all the best
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
12 Years NED!!
caya is offline   Reply With Quote
Old 06-24-2019, 07:02 PM   #13
Bunty
Senior Member
 
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 460
Re: Whack-a-mole next...

Buckingham Palace!! Your spirit is amazing Flori. Sending you love and support.
Marie xx
Bunty is offline   Reply With Quote
Old 06-25-2019, 09:16 AM   #14
Kim in CA
Senior Member
 
Kim in CA's Avatar
 
Join Date: Sep 2001
Location: California's Gold Country
Posts: 402
Re: Whack-a-mole next...

Dear Flori,

I can't imagine how very tired you must be of this battle that just rages on and on and on....

I was so hoping you would finally get some positive results. At the risk of sounding a little whack-o, I am attaching this link for your perusal.

https://www.mycancerstory.rocks/ I am keeping this protocol (Joe Tippen's) in my back pocket because I know there will come a time when I can't keep on with the Kadcyla, as the side effects are many, and my quality of life has really suffered. The use of anthelmintics seems very safe, and I figure, when all else has failed, what have I got to lose. If nothing else, it is a most fascinating read, and I've always liked thinking outside of the box!

Sending you my best positive thoughts and big hugs!
Kim
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.


5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.

9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .

11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!

7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!

June -Dec 2004 UW Vaccine Trial.

7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.

Brain MRI @3 months NED!

2006-2011 brain/body still NED

8/04/11 Taking Herceptin break, will monitor with tumor markers.

6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.

7/23/12 CA15-3 now 49.3
Her2 Serum 26.8

8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49

11/7/12 Add weekly Taxotere for 4 cycles

2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.

November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!

Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara

Jan 2016 Begin Kadcyla

March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla

November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
Kim in CA is offline   Reply With Quote
Old 06-25-2019, 12:03 PM   #15
Donna H
Senior Member
 
Join Date: May 2014
Posts: 243
Re: Whack-a-mole next...

Joe Tippen's journey is amazing. And I totally agree with his outlook and the path he took. It was his choice and it is working for him. And he doesn't have worms! Always a good thing.
Donna H is offline   Reply With Quote
Old 06-25-2019, 12:41 PM   #16
donocco
Senior Member
 
Join Date: Oct 2013
Posts: 396
Re: Whack-a-mole next...

They have been using anti-worm drugs for a long time. The first one used was levamisole.
It seems to stimulate T cell action. It was used for colon cancer after surgery then for some reason it fell out of use. One problem with Levamisole was possible bone marrow depression so it would be good to have Felbamisole (Joe Tippens drug) monitored by a physician. Only physicians who use alternative therpy to treat cancer would be willing to try it. There is a human drug related to Felbamisole called Mebendazole but the Felbamisole seems to be more effective. Vetinary drugs are much cheaper than human drugs and just as effective. Levamisole for vetinary use in treating worms is cheap. The human version Ergamisol is very expensive and is the same drug. I agree that Joe Tippens journey is amazing to read.

Paul
donocco is offline   Reply With Quote
Old 06-25-2019, 02:12 PM   #17
donocco
Senior Member
 
Join Date: Oct 2013
Posts: 396
Re: Whack-a-mole next...

Felbendazole not Felbamisole. I guess I was confusing Felbendazole with the anti-siezure drug Felbamate. I managed to Xerox some articles about Felbamisole as a treatment for cancer. Sounds very interesting. I think the brand name sold is called Panacur
donocco is offline   Reply With Quote
Old 06-25-2019, 05:05 PM   #18
donocco
Senior Member
 
Join Date: Oct 2013
Posts: 396
Re: Whack-a-mole next...

I read what I printed out about Fenbendazole. It seems to work by blocking microtubules like Taxol but has few side effects unlike Taxol. it also inhibits Glucose uptake in the cancer cells and cancer cells are very dependent on large amounts of Glucose. Joe Tibbems used the 1gm Panacur C packets each containing 222mg Fenbendazole. He took one packet daily for 3 days, went off of the drug for 4 days, then started again for 3 days then off,then on etc etc. He apparently plans to take it for the rest of his life with his doctors blessing. Very interesting.

Paul
donocco is offline   Reply With Quote
Old 06-26-2019, 03:33 PM   #19
Laurel
Senior Member
 
Laurel's Avatar
 
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 1,967
Re: Whack-a-mole next...

Just read Joe Tippen's story (see Kim in CA's post above) and find it fascinating.
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

11 Years NED
I think I just might hang around awhile....

Laurel is offline   Reply With Quote
Old 06-27-2019, 11:26 AM   #20
donocco
Senior Member
 
Join Date: Oct 2013
Posts: 396
Re: Whack-a-mole next...

I also was fascinated by the Joe Tippen story. Quackwatch would call it phony but I have long lost any trust in the powers that be as far as cancer is concerned. It has become a very political disease, politics being and inclusive word for power and money.

Kim in California mentioned about using it "just in case". Not a bad idea, I would do the same thing but those who think like this might also think about "stocking up" now with the Fenbendazole. It is available now OTC but in a few months a few years, who knows. Lambert Vet supply sells it in 1000ml 10% bottles.

Working at Sloan kettering in 1978 forced me to come to face with some very unpleasant realities that were very frightening. It still is a very frightening situation. In the late 1970s the late Linus Pauling came out with the idea that high doses of Vitamin C might be preventative of cancer so I said to myself: "Why not take Vitamin C, it really cant hurt me and who knows , it just might help. I still take it and Selenium and some other things ie Coenzyme Q10 (it also lowers my blood pressure) and Lipoic acid (this also helps with blood sugar. OK fine BUT

Lets go back to the year 1994. I had my own pharmacy then. The FDA wanted to take all the supplements off the market and make things like Vitamin C 1000mg, Vitamin E 400 units, Selenium 200mcg etc etc prescription drugs. This really shook me up. It never occurred to me that things like this could happen. I had been taking Vitamin C in what could be called megadoses for 26 years. it would suddenly be unavailable? To make a long story short, the FDA backed down due to congressional pressure. I guess people were threatening individual congressmen (and women) with non re-election if the FDA wasnt stopped. They stopped there anti supplement tirade for the time being. Supposedly they are going to try again. Who knows?

OK fine, suppose some people did stock up on Vitamin C, Selenium, "Fenbendazole"
whatever. What about the expiration dates? The Vitamin C you buy today will say expires 9/21 on the bottle next to the lot number. So will the selenium etc etc or maybe 5/22.

Thats a hard one to answer. But the Veteran's Administration throws out by law millions of dollars of expired drugs. I think it was in the late 1990s. They started saving expired drugs to test the potency after the suppossed expiration date. Most of these drugs were still pharmacologically active 5, 10 even 15 years after the expiration date.
They begged the FDA to let them use these drugs but the FDA refused. Some drugs like nitroglycerin are very unstable but minerals like zinc gluconate, potassium gluconate,
magnesium chloride are probably pharmacologically active for many decades if not longer. Yet if you buy a bottle of Zinc Sulfate from Walgreens today it will say "expires 7/21 or something like that. What about Fenbendazole? I dont know. It probably would be more stable in powder form that the 10% liquid.

Sorry this has been so long winded. Please excuse the inevitable spelling errors. If you want to work with your doctor using unproven but possibly effective therapy you have to be able to get and afford this therapy. Prices are going sky high with drugs.

Paul
donocco is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 05:21 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2019, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007
free webpage hit counter