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Old 09-28-2007, 10:13 AM   #1
SoCalGal
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Location: LA LA Land
Posts: 1,607
Unhappy nauseous verses nauseated

I did my double drip on Monday. I am still SO FRIGGIN NAUSEOUS. Usually I am "only" sick for 3 days. I take zofran, stay on ativan and it's really not helping much. I think it's the accumulative effect - it's already round 3 of the double with a single in between so if I could think I'd be able to add up the treatments, but it's a lot.

I'm eating every 2 hours - small meals, no dairy, wheat, etc., drinking my protein shake. Today I skipped the tykerb but am still just GREEN, no energy, can't think straight, can't really sleep, yuck, yuck, and more yuck.

Any ideas what else I can try? Thanks, Flori

PS: Yesterday I googled the word "nauseous" because in my chemo state I couldn't remember how to spell it. It seems that there is at least a whole page of hits discussing the proper use of the word. https://www.wsu.edu/~brians/errors/nauseated.html
__________________
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, remove skin mets, and will have 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. surgery to 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 but 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.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
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 continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
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 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
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 HPX. Adding back Avastin
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
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
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
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
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 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 10-06-2007, 10:38 PM   #2
Susan M(PA)
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Posts: 20
Flori,

I haven't tried this particular product, but I've had good success
with others in the line. Try a search on ipecac by Boiron.
It's a homeopathic, sublingual, so you can take it several times
a day. And it's supposed to work in a few minutes.
Homeopathics rarely interact with anything.

I also read about a tea. If I find it I'll let you know.

I'm about to start Tykerb/Xeloda, so I'm looking for tips myself.

I'm sure you'll find info on ACS, NCI and WebMD about chemo and nausea.

My onco suggested the hospital nutritionist as she works with
gastric cancers, feeding tubes, etc. I have to make an appt
this week. I haven't had any severe nausea yet with chemo,
but figure it's coming soon.

Hope you feel better soon!

Susan M(PA)
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Old 10-07-2007, 10:36 AM   #3
hutchibk
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Flori - I have your gift ready for mailing... if you think it will help, but by the sound of your post, Zofran's not helping. Let me know. Are you trying ginger?

I like the Boiron products. I have used several of their things, especially Arnica for bruises and the Occiblahblah (I can't remember how to pronounce it) for flu symptoms. It might be worth a shot to try the nausea one... You should be able to get it at Whole Foods.


Susan - Don't be too afraid of nausea from Tykerb/Xeloda. So few of us (maybe none of us?) here have had any nausea from that combo. Flori's combo is quite a bit different and somewhat uncharted territory.
__________________
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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Old 10-07-2007, 01:35 PM   #4
sally
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I had extreme nausea from t/x. I was taken off until my GI tract recovers and heals. I also had very bad heartburn all the time. Sally
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Old 10-07-2007, 04:56 PM   #5
Susan M(PA)
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Posts: 20
Barb,

I also like the oscillo for flu. Just stocked up, Whole Foods had a sale.
I think we could start a whole thread on homeopathic stuff!

I also like Boiron's:
-coffee cruda for mild insomnia
-lachesis mutus for mild hot flashes, got me through Adriamycin/Taxotere
-histaminum for hayfever sneezing

I also like the Natra Bio Thyroid Support and Nova Relaxation in liquid.
They seem a bit stronger for me, so if anyone tries the liquids,
go easy, a few drops to start.

Flori, Another suggestion for nausea from my naturopath is
medicinal peppermint oil rubbed on the tummy. It has a cooling, calming effect. Heating pad works best for gas.
Also works on tension headaches, stiff necks. And you smell sweet!
She also suggested drinking gruel, which is oatmeal broth.

Susan M(PA)
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Old 10-07-2007, 05:30 PM   #6
Ceesun
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Flori-Ginger from the health food store helped me a bit. Usually I had to just wait it out. Hope you feel better fast. Ceesun aka Cathy
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Old 10-07-2007, 06:01 PM   #7
Becca
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Join Date: Sep 2006
Location: East Central Illinois
Posts: 89
lots of nausea for me too

I have never posted before but have followed this site for 18 months or more. I learn so much from you gals--my onc is often surprised. I am shy or lazy about posting, but have just gotten to know you all without letting you know. Many times I have almost posted, but got too busy or tired, etc.

I have been on T/X for over 6 months and it has been hard chemo combination for me--lots of nausea, some vomiting, heartburn, diarhea, low blood counts, inflamation around the nails, etc. I have been in wonder about you gals who have had so few side effects. Finally last cycle was easier and I thought my body was getting used to T/X. The present cycle is a hard one again. Puzzling. I deal with nausea on and off through the day--try to sneak in food when I am distracted--like watching tv. I have given up most cooking--the smells and sight of food are too much. Perhaps there are other gals out there with lots of side effects and they have not mentioned it because it sounds like complaining or they can't understand why they are having a rough time while many of you are breezing through it. That's I how I have felt. I do not want to scare anyone just starting T/X about my side effects because many of you have so few.

Well, to briefly intoduce myself, I am Becca. I went 7 years without a recurrence and have now for almost 2 years been dealing with involved lymph nodes in the abdomen and some in the hip bone area. I am presently having radiation to the hips. This is a wonderful sight,glad to know all of you.
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Old 10-08-2007, 05:55 PM   #8
Susan M(PA)
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Posts: 20
Flori,
I recalled the tea for nausea, it's Jason Winter's tea, herbal, carried in most
health food stores. I agree with ginger.. I've tried grated ginger root
and capsules andginger beer, but a little Canada Dry gingerale is what does the trick.
I gave up soda over 25 years ago, due to migraines, so this is a huge
compromise for me.

Becca,
I also rarely post, and I have to agree with your comments. I also believe
we're not getting the true picture on this forum or most , because we all realize the fears that are associated with the disease and complaints of treatment.

I think this board has a high level of formal education, most are insured, and have access to treatments for the many side effects, and maybe more family support. I have been to BC boards which I would call "raw", most members are severely lacking in support and finances and may have other untreated diseases. So there is more "complaining" along with untreated anxiety and depression, than I find here.

I've led support groups for chronic Lyme disease for many years.
I found those that attend often have a great deal of formal education
and almost all are insured. The uninsured don't usually attend more than meeting.
In my opinion, because they could not afford the treatment recommendations discussed, or just don't feel they fit in. The best Lyme docs are very expensive and do not accept insurance, so even the insured cannot always afford good care.
Very sad situation.

Like you, I'm very grateful for all the wonderful support here.
Thank you, Joe and Christine and all the fighting survivors!

Susan M(PA)
dx March 2002 with Her2 +++, ER & PR neg, lung mets at dx, and currently.
Responded to chemos of Taxotere/Adriamycin, later Navelbine with Herceptin.
Able to stop treatments for 1-2 years and remain stable. Will be starting Tykerb/Xeloda this week.
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Old 10-08-2007, 07:49 PM   #9
SoCalGal
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Location: LA LA Land
Posts: 1,607
Thanks so much goils

Okay - I have made a list and will stock up at Whole Foods before my next drip...Thanks for all the input. Brenda - the gift will be used as it's still my best shot. Saw my onc today and he agrees with staying on the zofran for the first few days and then trying the homeopathic and natural remedies.

Thanks much,
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, remove skin mets, and will have 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. surgery to 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 but 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.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
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 continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
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 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
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 HPX. Adding back Avastin
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
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
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
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
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 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 10-08-2007, 07:55 PM   #10
SoCalGal
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Location: LA LA Land
Posts: 1,607
regarding HONESTY and CANDOR

Just want to say that speaking for myself, I feel that people DO post their true feelings. I know that I have.

For me, this site has been a tremendous source of support, inspiration, wisdom, strength and information from some of the most educated people I've "known".

The information here has allowed me to be a better survivor, and a stronger self-advocate. It has also allowed me to breathe easier, knowing that others are keeping an eye out for the lastest and greatest. It's very overwhelming to try to do it all - especially while feeling poorly from treatment.

I'm glad you decided to post, Becca. All we have is each other. Thanks for all the input, ladies!
--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, remove skin mets, and will have 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. surgery to 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 but 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.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
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 continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
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 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
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 HPX. Adding back Avastin
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
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
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
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
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 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 10-08-2007, 07:57 PM   #11
hutchibk
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I don't think there is any such thing as a single "true picture" - every individual has a different experience with the different treatments. I have had a fairly easy experience with all of the treatments I've had, and I've had many... My first round through chemo I had some pretty crummy nausea thanks to Adriamyacin, but I kept it simple and took my Phenergan religiously, as well as googled and searched for all the wisdom I could find to help with the side effects. I can't tell you why things might work for me or chemos might not be as hard on me, but it has nothing to do with insurance. I have no 'fixes' for side effects that are reliant on insurance, except for Phenergan. I have created a routine that works for me and helps me tolerate chemo. I don't know exactly what it is that works so well, except that I really strive to be healthy and knowledgeable about boosting my body, soothing it, and nourishing it as much as possible. I play with my diet in healthy ways until something works for me. Every person is different. There are so many factors that need to be considered when looking at why some people have an easier time than others. There can be dosage differences, underlying medical conditions, differences in diet and lifestyle, age differences, and just flat out genetic/physiological differences. As my onc always says, what works for one may not work for another. But that is why we are always sharing what works for us here on this site, in hopes that we can help the next person. As far as the supposition that was put forth about the demographic of our site, let me just say that I have no children, am not married, am a 'nuclear family' orphan, and I don't have a 4 year college degree. I just have a burning desire to look for solutions to what ails me. That is why the support of this site is so very important to me! I hope we are able to offer some ideas here that you haven't heard before. Some of us have reached out and paid for cancer specific nutritionists to consult with us - and that is often the knowledge that we try to share with others. Of course it is prudent and wise to seek out individual nutritional support for yourself, but I am happy to foot the bill and share what I learn with everyone here. Hopefully when you check in here from time to time you will enjoy the benefit of our consultations!

Becca - please be sure you have NO folic acid in any of your supplementation or vitamins. That means taking no multivitamins or B complex vitamins. It can worsen side effects of Tykerb/Xeloda. Also, no grapefruit products. And you might want to try 50 mg of B6 3 times a day with meals for the inflammation around your nails. Everytime I get lazy and don't take it, my toenails are painful, and when I get back on track... it clears up amazingly quick. I hope you start to feel better soon!

Susan - please let us know how you do on T/X... I'll cross my fingers for you.

Flori - I will mail it tomorrow!!
__________________
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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Old 10-10-2007, 05:03 AM   #12
madubois63
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Flori - Don't use ipacec - it's used for throwing up. Always had it in the house when the kids were little just in case they swollowed something. I am actually drinking ginger tea right now. I'm not feeling any nausea, I just like the tea. Gingerale is great, but read the label and make sure there is real ginger in there and not just flavors. I keep a bottle of pickled ginger in the fridge (the kind you get with sushi). Goes great with broiled chicken and really helps. Licorice (the real kind) is great for that "wonderful" feeling too. Comes in tea form besides candy form. I kept jello, broth and sherbert around. These seem to go down the easiest when doing chemo. Good luck sweetie...This will be behind you before you know it.
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Old 10-10-2007, 04:00 PM   #13
Susan M(PA)
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Posts: 20
Just to clarify my post on ipecac...
The ipecac I'm referring to is NOT full strength, yes full strength is used to induce vomiting. Homeopathic ipecac from Boiron is a minute dose, so the effect is the reverse, alleviating nausea if it works. Homeopathy refers to "like curing like" All the Boiron homeopathics and anything purely homeopathic will come with a dose as 6x,30c, etc.
These are extremely tiny doses, extracted down from larger dose,
derived from plants and minerals.
Digitalis is modern day homoepathic use of the plant foxglove, which is lethal at large doses.

I encourage anyone to research homeopathics, they can be
a wonderful, safe help to side effects. It's been around for over
a 100 years. In fact homeopathic was THE medicine at the turn of the century. Allopathic medicine ran it off the map,
although the rebellious wives of allopthic docs at the turn of the century were still taking their children to the homeopaths, because they
believed it was safer and more effective. The history is fascinating,
but we still do not really know why homeopathy helps,
so it continues to be controversial.

I was fortunate to work with a local MD for three years who decided to treat homeopathically for chronic conditions. I learned a great deal
from the experience.

Just a little bit of personal history...
I have 20 years of fighting very disabling chronic Lyme disease, symptoms often worse than chemo side effects. Nearly everyday of it
has felt like a flu or cold, often with more intolerable pain, brain fog and depression. Requiring heavy antibiotics to make life bearable. I was misdiagnosed for over six years. My husband and sole caregiver also has
chronic Lyme, and has been recently been diagnosed with early diabetes. So even though I don't post here often for obvious reasons, I think I have a lot to offer. I suppose I should post my story, but honestly I don't know where I would begin. I've only given the highlights. More docs than I can count, most have dismissed or run from my case, but I've met some exceptional docs along the way.

Sorry to all, if I don't explain everything well, I'm just trying to be brief and helpful at the same time. Like everyone, I'm doing the best I can. Please folks, reread the posts before replying, better yet ask for a clarification before hitting the send.

Best wishes to all,

Susan M(PA)
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Old 10-10-2007, 08:58 PM   #14
hutchibk
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Hi Susan - so sorry about your years struggling with Lyme disease. What is your b/c history?
__________________
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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Old 10-10-2007, 10:40 PM   #15
harrie
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Location: Hilo, Hawaii
Posts: 1,867
Flori,
Have you heard of the antinausea med called Emend? I have not tried it, but from others I have heard it works very well. It is also very expensive, I think I heard like $100 a tab, but worth it.
Maryanne
__________________
*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 10-11-2007, 05:14 AM   #16
madubois63
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Location: LI, NY
Posts: 660
Susan - Thanks for the clarification. I have never heard of taking ipacec for nausea. This is my something new for the day. I did not mean to upset you. I will read more on it - promise. I am truly sorry for your fight with lymes. My friend is dealing with lymes and BC also. It is very hard on her. I know she struggles with numbers (from the lymes) and chemo brain - can't get much done.

Maryann
__________________
Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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