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Old 06-27-2007, 09:01 PM   #1
TSund
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TCH side effects:

Since my original thread got wiped when the board went down, I will start again. I've missed the friendly folk who all answered on that thread.

My spouse Ruth has completed two treatments. While it hasn't been as bad as we were expecting I would love to continue to get good advice on these issues.

Heartburn. She's taking Prilosec. Do most people cycle on and off Prilosec or stay on it continuously?

Diarreha. She has to take an immodium or two, and then takes the bentonite clay the rest of the weeks. The clay was a suggestion of folks here on the board and we were thrilled to find something that didn't "shut" down the system so much. Outside of the couple "bad" days, it seems to really help keep things under control. Anything else?

Fatigue. Is there anything that helps??

Newest thing to appear: Pimples (whiteheads) on her scalp. Itchy and sore. ANy suggestions?

WBC and RBC: we received the suggestions of astragalus and reishi. Seems to have really helped the WBC! Eating liver and spinich etc. for the RBC. Please continue to advise if there's anything else that will keep her off the Neulasta!

Thanks as always!

Terri
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Old 06-28-2007, 01:55 AM   #2
danceswithrain
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Terri, these are just the things I am doing. I have to bounce back and forth between the immodium and reglan the first two weeks after chemo. (I was prescribed Reglan before my diagnosis because of something called 'gastroparesis' and have suffered from partial obstructions in my small intestine.)
Prilosec, Nexium or Protonix take several days to take effect after they are started they are not fast acting like Tums or Mylanta. If Ruth is having a constant problem w/heartburn or nausea she should probly stay on them. If it's just a problem sometimes I would try Tums or Mylanta and not the Prilosec.
Fatigue is a tough one. It is the one thing that can really get me down. I also suffer from Chronic Fatigue Syndrome, Fibromyalgia and a variant of Myotonic Dystrophy(Muscular).So I have struggle with fatigue for years. I take Provigil which helps me even before BC. It is still helping even with the chemo but not quite as much. But when your tired to get even a couple of hours of a little energy a day helps my attitude. I also increase my steroids from first two days after chemo to the first week out from chemo.
I suffered some skin problems too. Hand and foot syndrome caused by the taxotere. The Dr. recommended B6 @ 150mg per day. (skin was just peeling off my hands in sheets) That has stopped with the B6. maybe could help her scalp.
I do get a Neulasta shot the day after treatment The side effects (run over by a truck) suck but it has helped the first was the worst, 2nd not as bad, this last one didn't have that effect. RBC has been helped by small frequent healthy meals. (Which is the only way I can eat when I got the 'stomach burn' going.) Lots of broccoli, spinach, dark leafy greens in general, red meat, fruits, nuts, seeds, whole grain bread etc. I eat broccoli steamed or raw w/ranch dressing depending on my tummy. I seem to tolerate vegs better than anything when my stomach is acting up. If Ruth getting a metal taste even after you wash them try soaking them in a little vinegar w/water for a few minutes. (brushing my teeth w/baking soda also helps) Also make sure she's getting a good vit. supplement. I take Oil of Olay w/CQ10(blk and gold box)After years of designing my own and trying several all in one multiples this was the one that worked for me.
also I was at the health food store to get Super Blue Green Alge and instead they turned me on to something called 'Stem Enhance' That I have been very impressed with. (you can google it if your curious.) It has helped me feel better and stay healthier and have more energy.
I get my 4th TCH tomorrow(today?) I think it is getting easier. I have noticed a bit more chemo fog and fatigue this time but I also ended up w/a port infection so some of it may have been that. But overall this last treatment was the easiest yet so you two keep your chin up!
As always please have Ruth check w/herr doctor before she adds anything.
Your both in my thoughts and prayers.
Vicki
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Vicki
dia 4/07 stage 3 grade2
4.3cm w/enlarge lymph nodes;
er/pr-,HER2+++;Ki67 55%
TCH X3 every 3wks till 8/7/07,
Herceptin till 4/4/08
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Old 06-28-2007, 07:09 AM   #3
Melinda
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TCH side effects

TSUND,
HEre is the original thread that I posted in regard to TCH side effects. There are almost 20 responses to it
http://her2support.org/vbulletin/sho...H+side+effects
HOpe this helps you and anyone else that is about to do this regiment.
Melinda
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Lumpectomy 1/8
Mammosite radiation completed 2/10
Stage1/Grade 1
clear Margins /Nodes Neg
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Started TCH on 3/2 for 6 rounds of TC once every three weels and a year of Herceptin every 3 weeks -
Finished everything and now on Aromasin
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Old 06-29-2007, 07:31 AM   #4
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TCH + or - supplements

Hi Melinda,

Thanks for the thread connection. I think I had read parts of this one before adn wantto push out even further.

Jean and I have been discussing the pros/cons of supplementation during chemo. Obviously some do, some do not. Personally I am of the opinion that it is a shame we don't know more as I believe certain supplements would work in synergistically in tandem with the chemo AND help avoid side affects. Oncs usually go the company line and say NO but that is because there is little studies and they "just don't know". There will likely be few to no studies as it doesn't make $$$ for pharmeceutical companies. Frustrating.

Ruth had a great tumor shrinkage response to 1st treament and an apparant great response to astragalus and reishi for blood counts. She also took some Omega 3 with moderate 6, L-Glutamine, probiotics, multi-vitamin, avoiding a 5-6 day window around treatment. Oh, and bentonite clay was very helpful for diarreha. (It's supposed to help get rid of toxins too)

THe other thing that bugs me is that they say "eat anything you want during chemo". It's obvious that sugar/insulin can play a role, and other things can be carcinogens, etc. etc. but yet we are told to eat anything and NOT take supplemental nutrients across the board? This seems illogical. I do know the thought is to avoid heavy anti-oxidants.

My reasoning: L-Glutamine is already in body, and needed for gut protection, omegas are necessary for all sort of things. Probiotics are destroyed by chemo and need replacement. I'd rather risk the root and mushroom than the Neulasta. Multi-vit was approved by onc, and so she is taking the best I can find.

Sitting on my shelf (ruth NOT taking) are vitamin B complex, vitamin D, L-Carnitine, magnesium, coQ10, calcium, lipoic acid, curcumin, olive leaf extract. Frustrating to think that these might help but am waiting for now.

I welcome opinions, experience, research, on these issues.

Terri
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Old 06-29-2007, 07:39 AM   #5
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TCH: ICING of hands and feet, tea tree oil

Another discussion: I've been throwing bags of frozen peas on Ruth's hands and feet during Taxotere infusion in effort to help her nails and maybe prevent issues of peripheal neuropathy from taxotere. Opinions?

Could cancer cells "hide out" in hands and feet? Seems unlikely, and I think those would be zapped sooner or later, but I don't want to do anything stupid. Nurses haven't been saying a word, so I am figuring OK?

Oh, and one thing we read elsewhere was tea tree oil applied to nails. Haven't seen much mention at all of that on this site. 2nd chemo nurse swears by it. I think this one can't hurt>


TRS
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Old 06-29-2007, 07:51 AM   #6
SoCalGal
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supplements

There is a doctor at UCLA, Kenneth Conklin, MD. His whole area of expertise is enchancing chemo and supporting a woman's body as she goes thru chemo for Br Ca. I don't know where you live, but even a telephone consult would be of value. You could always send him whatever records he'd need in order to advise you.

I have been seeing him for about 5 weeks. Am on supplements and glueten free, dairy free diet. I feel MUCH better in general.

Good luck.
Flori
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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 06-29-2007, 11:48 AM   #7
TSund
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enhancing bc treatment

Hi Flori,

Which supplements does Dr. Conklin have you on?

Do you know which of these are a direct result of your personal bloodwork and which does he recommend in general?


Thanks

Terri
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