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Old 01-08-2012, 04:40 AM   #1
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Posts: 432
Question Tykerb and weight gain

Is it correct to persume that tykerb makes one gain weight? Hema hsa gained weight and her onc said that it is due to tykerb.Experience of other members with tykerb on this aspect is welcome
huband of Hema
Metstatic Breast Cancer Stage 4
Left breast cauliflower 25x20cm
ossousmetstatis in vertbrae secondaries L4=L5secondary
nodules in both liver lobes secondary
Diagnosed 10th March 2010
Her 2 neu +++
Taxotrne Zylotec started 16th March
Herceptin added 5th April.9th Herceptin over on 20th Sep '10.Started on Tykerb and Xeloda on 22nd Oct2010TYKERB 4 TAB A DAY XELODA 4 TAB A DAY ONE WEEK ON ONE WEEK OFFZoletrust infusion every 4 months.Lesion in Brain 3D CRT Radiation started on 1st Feb'12 for 20 days ,5 days a week for 4 weeks.Devloped a small lump in breast.Xeloda stopped from 11th April '12.On Taxol.After 3 cycles of Taxol Taxol stopped.Back to Xeloda regime from 3rd July
Herceptin started again on 27th Dec 2012.Xeloda stopped Navelbin added on 7th February 2013.Now on Tykerb Herceptin and Navelbin
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Old 01-10-2012, 06:10 PM   #2
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Location: New York, New York
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Re: Tykerb and weight gain

Hello, Pibikay,
I did not gain on Tykerb, in fact, the Tykerb, Herceptin/Xeloda regimen worked opposite on me. I also have become very careful of everything I eat, cutting out all fats, processed foods, sweets, and the like. I found that eating nuts when I had cravings satisfied me, so I carry a bag of sunflower seeds or almonds.
Wishing you and Hema a happy and healthy 2012.
As always,
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 01-12-2012, 02:42 PM   #3
Nancy L
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Re: Tykerb and weight gain

I have also lost weight on Tykerb---about 10 lbs.
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Old 02-01-2012, 10:47 AM   #4
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Re: Tykerb and weight gain

I've only been on Tykerb for ~2 mos. now (also Xeloda, Herceptin and Zometa) and have not experienced weight gain. Just the opposite actually. Due to the side effects I keep losing weight. Over 6 weeks I lost 10 lbs. I have heard that some do gain however.
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Old 02-01-2012, 11:01 AM   #5
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Wink Re: Tykerb and weight gain

Have Hema's appetite or eating habits changed since she started taking Tykerb? It could be that her body metabolizes food or digests food at a different rate or digests food differently with Tykerb. It could be a drug/food interaction thing. Some drugs interact with foods differently than other drugs do.
Blessings of peace and good health to both you and Hema in 2012 and beyond.
12 years and counting
Lucky 13 !! I hope so !!!!!!
14 Year Survivor
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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Old 02-02-2012, 05:13 PM   #6
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Re: Tykerb and weight gain

Has activity level been the same? Might have her A1C levels checked.
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Old 04-15-2012, 02:34 PM   #7
Join Date: Jan 2012
Posts: 13
Re: Tykerb and weight gain

I am on Tykerb/Herceptin combo for neo-adjuvent therapy. I have gained several pounds since starting treatment, but recently discovered that my TSH was very elevated. I think that the Tykerb might have been blocking some of my levoxyl as I was taking them together on an empty stomach. My endocrinologist agreed with me and we raised my levoxyl up a little to counteract it. Not even 3 weeks into the adjustment, my weight was down for the first time since January. Also my fatigue wasn't as pronounced. I had been blaiming everything on the treatment, but more likely it was low functioning thyroid in my case.
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Old 12-17-2015, 03:34 PM   #8
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Re: Tykerb and weight gain

I have gained 40 pounds since I started treatment.Some of it was do to prednisone. I have cravings of foods that I never had before though.I was 127 when I was diagnosed in 2012 and gained 40 pounds in three month.I then lost 10 and gained 30 and pretty much have maintained my 167 since 2013.My cholesterol is up and I have trouble carrying my weight.Do t

Do to a flap I can't exercise, plus I now have breast cancer in the bone and I quit my job.I have become sedative.There are a lot of factors.Thanks, Patricia
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