| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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10-14-2008, 07:13 PM
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#1
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Senior Member
Join Date: Aug 2008
Posts: 45
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just miserable
i'm not asking for advice...just venting i guess. i have never felt so miserable so continuously as i have since xeloda - tykerb came into my life. it changes between constipation, diarhhea, nausea, heartburn, gas, bloating. today i woke up with what i think is the mother of chest colds in that my lungs and chest feel so so tight. i wish i could cough. used all my inhalers, decongestents, etc. can't take vit c with xeloda. unless of course the xeloda is affecting my lungs which can happen. i can't wait for the results of the dam blood test. if it comes out positive i sure hope she calls me to stop it before my appt. sometimes i just don't even care what happens to me. i know i haven't been at this as long as many of you ladies but 18 years of suffering with lupus wears you down also. thanks for listening. gm.
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10-14-2008, 08:38 PM
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#2
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Senior Member
Join Date: May 2006
Posts: 3,142
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just miserable
I am sorry you are feeling so miserable. There must be something that can be done to make you more comfortable until you get the test results. I would call my doc's office and make it know that I am feeling so miserable if I were in your situation. In fact I have done that in the past. I found out they were giving me some other medicines they didn't tell me about and those medicines were causing my symptoms !! If what you are experiencing is not on the side effect lists of the Xeloda and Tykerb there might be some negative interaction with some other medication or supplements you may be taking. Also everyone's body is different. We all respond to medicines differently. I hope you feel better soon.
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10-15-2008, 08:27 AM
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#3
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Dear GM,
I am praying for you with all my heart. I hope that they find a way to give you some relief from these side effects.
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10-15-2008, 10:03 AM
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#4
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Ugh! What a sorry deal! I'd be a fruit cake for sure! Vent all you like! No time to be Miss Hero today! But I'm praying they figure it out quickly and get you back to the regular crazy normal again. Sending prayers and best wishes, ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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10-15-2008, 10:22 AM
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#5
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
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Please Vent
Always here to listen, GM, vent away. Being sick does tend to wear one down no matter how long the journey is. Lupus alone is enough to have to deal with and then, this. I am sending you a giant hug laced with thoughts of you feeling better in no time. Sorry you are feeling so miserable.>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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10-15-2008, 11:55 AM
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#6
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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I am soooo sorry you are having a rough time with the combo. I am so interested to see what your test shows re: the enzyme. Just to be sure, you're not on any vitamins that have folic acid in them, are you? It can be in your multis and B-complex, and it can really increase severity of SEs while on Xeloda.
I take nexium with my Tykerb... as I have had sporatic acid reflux/heartburn with most of my treatment combos, and it really really helps. Also, I take a digestive enzyme with all of my meals that helps me digest everything more efficiently and really corrects the stomach irritation and sourness...
I hope you start to feel better soon. I have been pretty tethered to the potty myself for the last two weeks since dropping Xeloda and adding Herceptin to my Tykerb. I am dreaming of the day my body gets used to this new combo and this particular SE subsides...
__________________
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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10-15-2008, 03:34 PM
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#7
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Senior Member
Join Date: Aug 2008
Posts: 45
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thanks for all your comments. i had such an easy time with herceptin...no problems at all (except if you want to count that it stopped working lol). i have actually stopped even my multivitamin and b-complex because they both contained folic acid. thing is i was very deficient in that so i don't know. i'll ask rheumy tomorrow. also i've been on nexium for years. brenda, what is the digestive enzyme you're taking? maybe that would help me. i need to do something because i can't live like this for the duration. gm
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10-16-2008, 08:48 PM
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#8
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Senior Member
Join Date: May 2006
Posts: 3,142
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just miserable
I am not Brenda, so I hope you don't mind me commenting on the digestive enzymes. Our own her2support.org website has a link to information on that subject. You might want to go to http://cancernutrition.com/enzymes.html.
Fresh or candied ginger may be helpful for nausea. It is good in tea or just by itself with warm water.
Pepermint sometimes helps with digestive problems.
Probiotics (friendly bacteria usually found in yoghurt)helps some people with digestive problems. Some people find it helpful to eat 4-5 small meals a day instead of 3 large meals.
Take care. I hope you feel better soon. |
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10-17-2008, 12:44 AM
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#9
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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I use Safe and Sound Digestive Enzyme. I order it from my nutritionist at Northwest Natural Health in Seattle.
__________________
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."
Last edited by hutchibk; 10-17-2008 at 12:47 AM..
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