HERCEPTIN

TODAY I SAW DOCW/ FATIGUE AND BREAST PAIN.HE SAID IT IS NOT A REACCURENCE BUT PERHAPS I AM "HERCEPTINED OUT"/I AM SUPPOSED TO RECIEVE IT TOMARROW{THE USUAL EVERY 3 WEEKS}I AM GETTING SO TIRED AND EXTREME BREAST TENDERNESS.HAVE HAD LABS,WILL GET CT TOMARROW.HAS ANYONE GOTTEN SIDE EFFECTS FROM THE MEDS?PLEASE.I AM DESPARATE TO KNOW.MAMABEAR1@SBCGLOBAL.NET,PLEASE WRITE TO ME ASAP!!!!I STARTED IN JANUARY SO EVERY 3 WKS SINCE THEN ,THE PLAN IS FOR A YR.@THIS TIME.DONE W/ CHEMO SINCE NOV2004,SURGERY SAME TIME,28 RADIATIONS,STOPPED IN FEB.THIS IS JUST A RECENT PROBLEM.

PLEASE RESPOND TO POST RE;BEING :HERCEPTINED OUT"PER SURGEON.

Lynne
I seem to be more tired but I have been on it 1 1/2 yrs. I also have breast pain but more from reconstruction. Try not to worry until you see what the tests show.

Hugs
sheila

I HAAD TRAM FLAP IN NOV 2004.I THOUGHT I WOULD NOT HAVE TO WORRY ABOUT PAIN.DO YOU KNOW WHY THE BREAST PAIN OCCURS?IT ACHES AND BURNS ANS SO I FEAR A REACCURENCE.THE FATIGUE IS RUINING MY LIFE.I FEEL SO USELESS WHEN I HEAR OTHERS WORKING AND TRAVELING.I AM W/O MUCH FAMILY SUPPORT AND FEEL I DO NOT WANT TO OVERREACT BUT ALL NEW SYMPTOMS CREATE FEAR.THANK YOU SOOOO MUCH FOR ANY REPLIES.

Lynne,

There are many women here who have received Herceptin for 3+ years and several who have received it for over 5 years. None of these women have written that they experienced the symptoms that you have. In particular the Herceptin website does not mention any instances of breast pain.

Fatigue or tiredness on the other hand is a common complaint. This seems to disappear after time.

Does your onc still premedicate you with benedryl? That may explain tiredness also.

Regards
Joe

PS.. Do not write messages in caps. This is considered bad manners on some message boards, but if your cap lock button is stuck, we understand.

Lynne
You may be experiencing breast pain from the tram....I have friends who still complain after a year of pain in the breast from tram surgery. I had tissue expander and implant and after 1 1/2 yrs it still hurts.
hugs

Sheila

Hi Lynne,
I have been on Herceptin for 16 months and am very tired. I just keep plugging on though........ I do find that if I exercise, I feel better.
Denise in Pa

Hi Lynne!
With all you are going through darlin you must be exhausted...it is a long rocky road and it sounds like you are at your wits end. Please take a deep breath and a slow and thorough review with your doctor; I have been on herceptin weekly for a year now and do not have the symptoms you experience...I too wonder if it is a side effect of your surgery...keep us posted and hang in there!
Love Kim

Need a vacation, Joe?

You know I love ya.

Lisa

(Sorry if this repeats. I lost my first reply.)

I, too, am tired of being tired. I've been on Herceptin since Oct. 02, but I don't think the drug is causing the fatigue. Could be. But I've also been through months of Navelbine, then WBR, now Taxol (plus Zometa), too.

And while I think my body needs a chemo break, I also believe my liver has tumours again. So no break for the weary.

And, yes, unfortunately, bone mets can appear quickly. I had a complete bone scan one month and was told all was great and I'd die an old woman with arthritis. Then 2-3 months later I had bone mets appear on another scan almost literally from head to toe.

There are few, if any, black and whites in this boat. Only lots of choppy, grey waves.

Love and light,

Lisa

I'm losing my mind!!

The first half of my previous message WAS for you. The part about bone mets was a repeat of what I replied to Christine.

Sorry for the chemo brain/radiation brain/tired brain mix-up.

Love and light,

Lisa

I found that I had problems with herceptin when I got the triple dose every 3 weeks, but when I switched back to the weekly doses, they went away. Harder to go in every week, but preferable to the side effects....

Joe,thanks for your reply and advice on caps,I use them to see better and because I am terrible at typing.It is new to me using computer but a lifesaver.thanks much,lynne

Thanks much for advice.Do you excercise even when tired and at your wits end?

Your message was so sweet,thanks.Surgery was nov.2004 and this pain started recently w/ burning and an ache.I was terrified and am waiting ct results from this am.I had herceptin this am as well.How will I know if it reaccurs??????

No worry about repeats,I do it as well.I am not on any chemo only herceptin since Jan.I finished chemo in nov ,then had tram and 28 rads,.I seem to started to get energy back after surgery and then began herc.I am depressed as well.Did you have pain??What was the sign of your reaccurnce?Thanks,muchLynne

THANKS,NO ONE TELLS YOU THAT PAIN IS NORMAL.wHEN IT STARTED RECENTLY i FIGURED IT WAS CANCER.iT BURNS AND JUST ACHES.i FEAR EVERY PROBLEM IS A NEW CANCER SINCE i HAD 27 POS NODES IN PATH REPORT.tUMOR {5 CM}SHRUNK W/ CHEMO BUT ALL NODES WERE POS,AND THEY NEVER TOLD ME TO FEAR THIS .IT WAS A TOTAL SHOCK BECAUSE THEY SAID i RESOPNDED SO WELL NOW i HEAR BECAUSE OF NODES i AM DOOMED!lYNNE

dO YOU KNOW OF ANYONE HAVING A REACCURENCE ON HERCEPTIN?hOW LONG CAN YOU BE ON IT?hOW PROTECTED AM I IF i was tod 80% chance of reaccurence w/o herceptin?Can I ever relax and stop living in fear?

Lynne:

There are no absolutes when it comes to BC. I was stage 1, 1.6 cm lump, no nodes positive, went through full chemo with A/C, & Taxol as well as a bilateral and reconstruction.

And 2 years later, I developed mets to liver and bones. I have known others with nodes positive that are still mets free.

Just try to enjoy each day as much as you can. Find hobbies or whatever brings you pleasure. Exercise when you can, celebrate being a couch potato with the remote when you're too fatigued to do anything!

Talk to you onc about the energy issue, ask about vitamin b12, either in shots or pill form, they have helped me with energy levels.

Lynne,

In regard to seeing the screen better, my husband just told me how you can increase the type size.

1. Minimize anything you have open.

2. Right click on the desktop and select "Properties."

3. Select "Settings" tab

4. On "Screen Area" slider bar, move the bar further left. The further left you set it on, the bigger your type will appear.

Let me know if you have questions/problems@ lisalowe@qwest.net.

Love and light,

Lisa