Herceptin Increasing Appetite?

[Esther]

I was on herceptin from Jan 04-April07, had a 5 month break to test out going on Tykerb and am now back on Herceptin.

When I was on Herceptin the first time, I gained weight during the time I was on it. Once off of it, I was able to begin losing the weight.

Now since my infusion 2 weeks ago, I am finding that I have a bigger appetite and am hungrier. Could it be the Herceptin?

Has anyone else had an increase in appetite from Herceptin?

[KellyA]

Hi Esther,

I did have problems with my appetite/weight increasing with the Herceptin. All in all, I gained around 15-20 lbs. The weight has gradually begun to come off, but I still have around nine or so to go. I definitely felt hungrier on the Herceptin and would even feel a little sick or nauseaous (SP?!) if I let my stomach get too empty.

Love, Kelly

[Becky]

Dear Esther

One of the biggest reasons that I was happy to change from weekly Herceptin to the triple dose was that I CRAVED chocolate big time especially the day after Herceptin. I would make brownies and whatever my kids and their friends didn't eat the day after Herceptin, I would eat and then throw them away.

I didn't crave anything else but chocolate but it was an intense crave.

[Lani]

Could you please add this to our thread listing "side effects of herceptin, imagined or not" as perhaps someday we should l present that thread to those at Genentech responsible for gathering data on herceptin side effects post-FDA approval. I realize the list is anecdotal, but I have not seen evidence that such data is being actively sought (the FDA requires drug companies to do gather this information post approval, but rarely enforces that requirement, so most drug companies do not actively pursue the data)

THANKS!

[harrie]

I have been on triple dosage every 3 wks since mid-May and I have not noticed any increased appetite or weight gain. Since I ended chemo I have also been able to increase my exercise program so maybe that helped.

[KRISS]

I am very much like Becky. I have never had a sweet tooth. One bite of ice cream is all I ever needed. But now it is like I have to have sugar every day. The craving is much stronger right after my treatment. I always thought the plus to cancer would be weight loss. Funny me, I've gained 18lbs.

[Brenda_D]

I seem to feel hungier in the few days right after my 3wk Herceptin infusion, but after I eat, I feel queasy and wish I hadn't ate.
That leads to not being hungry or wanting to eat for the remaining time before the next TX.
Right after H, I gain a lb or 2, then I lose a lb or 2 a week until the next H.

[Jeanette]

I also gained about 15 lbs. I am fighting a losing battle trying to take it off. It has been so hot here in Florida to go walking, but hopefully when things start to cool off I will be able to go. I also craved chocolate on occasion. Have a nice day everybody, Jeanette

[Connie Jean]

Hi Esther,

I, too, gained weight on Herceptin. I was on it for almost 2 years and am now on Tykerb.

Why did you go back on Herceptin? I was hesitant to go off herceptin, because it seemed to work for me and kept mets away. Tykerb passes the blood brain barrier and prevents the crosstalk between HER1 and HER2. But I still wonder if I should have stayed on Herceptin since it was working for me.

Good luck on losing weight. It has been very difficult for me.

Love and prayers,
Connie

[Lani]

the term they use for investigating (gathering data on) the true incidence of side-effects/problems once a drug gets used on a larger population once trials are over and the drug approved: post-marketing surveillance (have no idea how they came up with it) Again, if those who contributed here could add it to the thread on please post your two cents worth on the side effects of herceptin real or imagined (now classified under the herceptin/tykerb board) it would be greatly appreciated. Since the drug companies do not seem to be too actively pursuing the info, we need to make it as easy as possible for them to get our input SHOULD THEY EVER SEEK IT or should we ever try to SEND IT TO THEM.

Thanks again!

[Rendi69CA]

I gain 20 lbs and having a hard time getting off. I am hungry after my infusion.

[StephN]

Or create a "part B" to that other thread.
Been on Vitamin H for close to 6 years now. My weight stabilized at about a 10 pound gain after my last round of chemos with Herceptin 5 years ago. Can't seem to budge that 10 pounds! http://her2support.org/vbulletin/images/icons/icon8.gif Was always on the skinny side.

I am on the 3-week dose.
My infusion is scheduled between 11:30 and 12 noon each time. This timing is on PURPOSE so I can eat DURING my infusion. My cancer center has very good "patient lunches" and I take advantage of that perk. I get my bottle of Athena water, my little can of cranapple juice and have my lunch. That staves off "the munchies."

My infusion is also given over 45 minutes. I find that I feel better with that timing vs. 1/2 hour. Not much dif time-wise, but a big dif feeling-wise.

Try eating a moderate amount during the infusion and see if it makes a difference. I still crave chocolate - but don't allow myself anything but organic and 75 to 90% cacao - not the sweet kind.

[new shoes]

I Lost 20 lbs. on Taxetere. Then gained 5 lbs when I started Tamoxefen. Since starting Herceptin I have lost another 10 lbs. and keep losing. I find that I am hungry, but after 2 bites I am sated. I usually loose a few lbs. over the summer, but have not started to put any back on now that the whether is cooler.

At 5'7" and 125 lbs I look svelt, but none of my clothes are fitting.

[Erin]

Hmmmm... this is interesting. I switched three weeks ago from the 3-week herceptin to weekly to try to cut down on the joint pain. That seems to have worked, and I am able to exercise much more comfortably, and yet I have put on 4 pounds in 3 weeks! I had gained around 6 while on chemo and it all came off after I finished. So I had been back to my pre-bc weight until the change in the herceptin routine.... makes me wonder.

[Barbara2]

I gained around 15-20 pounds while taking herceptin. I, too, have wondered why it hasn't been yet listed as a side effect. It seems on this site, there are many who have reported a weight gain with herceptin.

What convinces me that herceptin may cause weight gain, is when I read about the ladies who report a gain, and say they have "always been thin"..."never have had any issues with weight gain"...etc. and yet they gain weight on herceptin.

Not complaining, of course, because we know what a blessing the drug has been to many, but it would be beneficial to know this side effect; I kept telling my onc I was gaining weight, but yet eating the same as I had before; being real careful, etc. He sent me to an endrocrinologist to check out the thyroid as the numbers were a little high; he didn't want to give me meds; fine with me. My weight kept creeping up, up, up. After completing herceptin, the increases stopped.

[Esther]

Thanks for all your responses, my weight had stayed the same since I graduated from college. I had always been fairly slender. Vitamin H seems to have changed that.

I went off Herceptin to switch to Tykerb, since it crosses the BBB and may have some impact on brain mets.

Once off Herceptin I lost 10 pounds in the first few months. I am back on Herceptin after 5 months off of it due to an increase in liver enzymes, and CA 27-29. A pet/ct scan showed no real measurable liver increased activity, but I think there may have been some minor progession that is too small for the pet/ct to pick up on. I am so sensitive to any changes, and I felt liver pain, nausea and lack of appetite, which for me are signs of liver mets.

I've had 2 weekly infusions of Herceptin so far, and feel 100% better.

[Bev]

For the record, lost 5 # on Dx, lost a couple on AC, gained 7# on T & H. Held steady on H alone. Still holding steady. I think for me it was decadron that made my stomach growl continuously. It was actually funny, while eating a meal, my stomach would growl and growl, and I was hungry. BB

[fauxgypsy]

I haven't had a problem with weight gain or appetite. Actually my appetite has decreased. If I didn't eat with Dale I would probably have skipped several meals. I have been off taxol and carboplatin for about two and a half months and am continuing the herceptin every three weeks and I have actually lost a few pounds. I ache all over though, especially my hips and feet.

Leslie

[Karen W]

I didn't crave anything in particular or gain weight while on Herceptin.

Karen

[MJo]

I gained 40 pounds during treatment. I was hungry all the time. I finished Herceptin one year ago and am beginning to lose the weight thanks to Weight Watchers. I have 20 pounds to go. It is not uncommon for women to gain weight during BC treatment. I was afraid I'd never lose the weight, but one year later my body seems to be returning to normal and I'm able to regulate my appetite better. My attitude toward weight has changed since BC, and I can't believe I spent all those years worrying about my dress size. What a waste. My healthy weight will probably put me at size 12-14 and I am going to celebrate. I believe that if we gain weight during treatment we should not worry too much about it and that we should give our bodies time to return to equilibrium after treatment. We can all get back to a healthy weight after treatment, but it may take time.

[PinkGirl]

I was waiting for someone to echo my story. I also gained 40 lbs. along the way. I lost weight on FAC and then started to gain on T/H. I had a HUGE appetite that I blamed on the decadron. But when I finished Taxol and stopped the decadron, I kept gaining.

I have not been able to lose it. I manage to drop about 5 pounds and then when I eat normally, I gain it back. I also have HUGE cravings for chocolate. I have always liked chocolate but I didn't used to dream about it !!

My hair is growing very slowly ( used to need to trim it every 4 weeks ) and my fingernails just started to grow last month. I am tall and "big boned" and actually have more of a problem with the # of pounds I weigh than I do with what I look like. I have become a "Monday morning" dieter and exerciser. It lasts until Tuesday.

[Andrea Barnett Budin]

Ditto. Longterm Vit H user. The #####s. I know that Monday Morning Diet. For me, it only lasts till noon...

Hair thinner, dryer, less wavy on its own. PRODUCT. Volumizer and curl conscious hydrating lotion. Hairline never reappeared after Taxotere (2nd round of chemo). No eyebrows. Little eye lashes. Had good brows and long, thick lashes. Nails thin too. And peely. So -- thin hair, nails and veins (I'm told). Just my luck! What about the rest of me??? Not the areas I was hoping for thinness... BUT I'M DANCING WITH NED, and you just can't beat that. So full of gratitude and AW SHUCKS.
Andi http://cdn-cf.aol.com/se/smi/0201e05fca/06