New to Herceptin

[Rose in Kansas]

Hello. I began 52 weeks of Herceptin yesterday. I am a stage 3 bc survivor; 14/17 nodes positive. Er negative, strongly Her2 positive. I had a left mastectomy. I had 4 AC and then 4 Taxol, followed by 29 radiation treatments. My muga scan indicated a level of 52%. I had Hodgkins disease 20 years ago, at the age of 20. I need advicce on what to be looking for, etc? I feel pretty good, still really tired from radiation and chemo, though. I work full time, have two kids and am married. I am 40 years old. It's been a helluva year! But, thank god I am here. I really like and respect my doctor and believe I have great medical care. Any advice on things to avoid, things to be extra careful about, etc, is greatly appreciated. Your stories really inspire me. Thanks - Rose in Kansas

[Lolly]

Hello Fellow Survivor!
Your dx sounds similar to mine; I started treatment in Oct.'99 after left mastectomy, 4 A/C and 4 Taxol plus 33 rads. I didn't follow up with Herceptin as at that time it wasn't standard to offer it before Stage 4. I did have a recurrence 6 months after finishing treatment and will always wonder what if...so glad for you that you're receiving it NOW!
I received it weekly along with Navelbine for the first 6 months, and most of the side effects I experienced (low blood counts, extremely acid stomach, fever) I think were due to the Navelbine, so in that respect our situations differ. I am now on a 3 weekly cycle and sometimes am tired, sleepy and somewhat achey the afternoon of the treatment but am usually fine by the next day. Once in a while I am achey in joints and muscles for 2-3 days, but that seems to happen only if I'm already tired and run down before a treatment, so I try to take extra good care of myself and get plenty of sleep the week before treatment day. As you are on a weekly schedule you'll want to be sure and stay on a regular schedule of sleep, and just in general eat a good diet and take care of yourself; things you already know about I'm sure!
I think some others who are receiving Herceptin as adjuvant will most likely be responding, and will have good advice for you. Keep us posted on your progress!
Hugs,
Lolly

[Mary - Tierrasanta in San Diego]

You may want to get your onc's opinion about taking CoQ10 to aid your heart function. Seems to have helped me. Good luck with your treatment. Also glad to hear that you are receiving Herceptin at this stage.

[jeff]

Hey Rose,

Sorry you have to be here--but there's lots of support coming your way! My partner, Rachel, just had her fourth infusion of herceptin the other day. She's having it along with the last part of her radiation treatment, and will, I hope, continue to get it for as long as possible! But I write simply to tell you that she has not, as far as we can tell, had a single side effect from the herceptin. The infusions take 1/2 hour--feels a little cold going in, she says--but otherwise, seem very tolerable.

Good luck!
Jeff

[Linda in MI.]

Rose,

Did you get herceptin in combination with Taxol? Are you in a trial?

Blessings and Hugs,

Linda in MI.

[Rose in Kansas]

I am not receiving Herceptin in a trial; I completed 4 AC and 4 Taxol, followed by 29 radiation treatments. As my cancer is very aggressive, my onc. strongly encouraged me to go on Herceptin. PET and CT scans completed after radiation showed NED.

[:Lisa W in SD]

Hi Rose, I am glad to hear you are getting Herceptin! I am curious if your insurance company covered Herceptin being you are stage III? Did your previous cancer history have anything to do with you getting Herceptin at this stage? I am in a clinincal trial but was randomized for standard treatment only. I am also stage III, strong 3+ her-2-neu! Best of Luck! Lisa

[Sarah]

Good for you to be receiving Herceptin. I finished up with 52 weeks of Herceptin this past October. Herceptin had no side effects that bothered me. Yes, it was cold going in initially, but even that I "outgrew" as time went on. I had a Muga scan every 3 months and the results were always within normal. Sometimes it got down to 50%, but then it would go back up the next time. I took CoQ10 tablets everyday. I weigh 100 lbs. and took 2 or 3 tablets everyday. They are expensive, so I always looked for the Buy one get one free sales. May never know if they helped, but the Doctor said that it wouldn't hurt. Good luck to you on your journey. God Bless.