Need Long Term Herceptin Use Info

[Joe]

We have a request from a large research facility for info on long term Herceptin use. They would like information from patients who have been on continuous Herceptin for over 3 years. (Since June 2004.)

Have you suffered any side effects which your oncologist said was due to long term use of Herceptin?

Please respond with your first date of treatment and any long term side effects, if any.

Regards
Joe

[Christine]

Christine Started August 1999, No long term effects.

Hugs
Christine

[sarah]

Sarah started with Herceptin and Taxol in March 2004 and still gets Herceptin every 3 weeks. Muga test is good and consistent. Off and on itchy skin rash that started during initial chemo and Herceptin treatment and still comes and goes.
Hope to stay on it as long as I'm getting AIs but in August will get a new review and I'm afraid the high price will become a factor as well as concerns for the heart even though no problems are showing up so far.
sarah

[StephN]

Dear Joe -

As you know, Herceptin has been a marvelous drug for me in keeping my aggressive cancer at bay.

Began Herceptin weekly in combination with Taxol & Navelbine early January of 2002. Achieved NED in July of 2002 and stayed on Herceptin on the 3-week dose since that time.

Only effects I notice are some extra fatigue the evening and day after my infusion. Mild runny nose, but not constant. Can't attribute any other side effects to Herceptin as I had so much chemo and feel most other problems like the leg cramps are due to damage from taxanes.

My MUGA has remained stable and I have another in 2 weeks.

[Ann in Boston]

I have Inflammatory Breast Cancer.

I have been on Herceptin since August 2002.

August 2002 to June 2003 Herceptin alone every 3 weeks.
Recurrence under Tram Flap reconstruction

June 2003 to June 2004 Herceptin + Navelbine 3 weeks on and 1 week off for both.

June 2004 to October 2006 Herceptin + Navelbine every other week.
Dropped Navelbine due to neuropathy in hands and feet.

October 2006 to present Herceptin alone every 3 weeks.

Minor side effects - very bad fingernails (soft & tear very easily)
very bad dry eyes
had one episode of sinusitus 3 years ago and nose is
little drippy
minor fatigue
My MUGA is the same as the day I started Herceptin

[Esther]

I started Herceptin in Jan 2004, continued until April 2007, when I changed to Tykerb/Xeloda.

Only side effect I can see is my nails are thin and break easily. MUGA after over 3 years on Herceptin was still 75%.

[Sheila]

Joe
I have been on Herceptin Continually since 2003. The only side effects I have had are weight gain runny nose and watery eyes. I do think my nails are more brittle. So far no problems....just need to keep adding different chemos, but Herceptin has kept my BC in the neck nodes and nowhere else for 4 years .

[Kim in CA]

Joe,

I've been on Herceptin nonstop, with and without chemo since Oct. 2001. Generally I feel great. I do have paper thin, splitting nails and very sparse eyelashes and brows. Not sure if this is the Herceptin or the cumulative effects of all the chemos in the past. I'm not complaining though!

Kim in CA

[Andrea Barnett Budin]

Hi Joe!

Metastic bc in Aug '98 -- Taxotere Sept through May '99.
Added Herceptin November '98 and have been on steadily ever since. Keeps me NED I believe.
Did weekly through to Jan '01 when I decided it was safe to switch
to triple the dosage every 3 weeks. Great relief in the plan!
Receive infusion w/500 cc's saline over 1/2 hr, double saline flush
+ helplock.
Given w/chemo nurse in mask and gloves, using betadyne to clean the
area -- through port.

Slightly runny nose.
Very dry eyes.
Thin, splitting nails.
Slight redness to declotee area and inner arms above elbows. Don't know
what this is from, but does NOT itch.
Bruise easily and don't heal quickly. Again don't know what this is from.
Fatigue, but controlled with supplements.
Flagging red blood cell count that responds well to Aranesp. Called
"chemo-induced anemia". Can't really say why. When HGB low for
me, I haven't got the energy to get dressed, but do, then rest.
Then GO...

Am grateful with each day for the opportunity to whine a bit about the above side effects. See each day as a wondrous gift! Am profoundly appreciative for this medicine that is keeping me alive and well for the most part!!

Andrea

[Lolly]

I was on Herceptin from January 2001 until April of 2007. I stopped Herceptin due to progression; although still just fighting stubborn lymph nodes, more are now involved so have moved onto Tykerb.
No long term side effects that could be attributed directly to Herceptin except symptomless low LVEF. My first Echo in 2002 was at 65%. Over time it gradually dropped. My Muga in June 2006 was 49%. My Echo just last month, after 2 months off Herceptin, was 65%.
A great drug for me for many years!

<3 Lolly

[Joe]

moving it to the top.

[kareneg]

I have been on Herceptin since January 2002. With no side effects at all. Last muga scan was great and will be redoing it again July 30th.

[Andrea Barnett Budin]

I had a MUGA before Herceptin ('98) and ECHOs every 6 months thereafter. As of Feb. '06 Dr. Pegram said he believed if I was going to have a heart problem it would have showed by then, so he graduated me to annual ECHOs. I am due in Aug. Anxious to see what it shows EF-wise. Will let you know.

Also, was thinking -- after Taxotere (Sep '98 through to end of May '99)
-- and 2nd baldness, my hair grew back way thinner, and fried. My hair line (widow's peak and all) never came back. Just some fuzz. Hair at top of head remains like hay, permanently damaged (as I hope all cancer cells are/annihilated).

My eyebrows never grew back that second time. My eyelashes barely grew back, went from thick and long to sparse.

Was this all from Taxotere and/or Herceptin? Don't really know. Just reporting, for consideration...

ANDREAD

[sally]

I started Herceptin in June of 2004. I have been on it every three weeks since. I have very brittle nails, insomnia, dry eyes and itchy dry skin. I know that menopause can also cause all of these things. I do have a constant runny nose which I beleive is the Herceptin for sure. Sally

[Barbara]

Hi:

I started on Herceptin in June 2004 and remain on a every three week schedule. My muga scans have remained stable between 63 and 65. I just had a muga today and don't have the results yet. Outside of mucus plugs in my bronchial tubes and sinuses, brittle nails and muscle cramps, I had had no continous side affects. I do get a mild headache that lasts three or four days and do retain fluid for about 24 hours after the infusion. (I have been anemic which the oncologist now believes might be a side affect of Herceptin and my white count is low between 2.9 and 3.9 which may be a side affect. Both were normal before my treatments.)

Barbara

[kim]

I started herceptin with chemo Dec 2003. Been on herceptin alone since April 2004.
No major side effects. I often feel sort of funky the day of tx.

Minor things I assume are frome the herceptin- watery eyes, thin splitting nails, thin eye lashes and brows.


Kim

[kk1]

I have been on Herceptin every 3 weeks since April of 2004.
side effects are very minor and short term:
~4 hours after treatment I feel extremely tired, but after a good night sleep of about 9-10hours I wake to feel completely normal and rested. approximately 48 hours after infusion I have a slight running nose and itchy eyes which last 1-2 days. My nails are extremely soft so I have to keep them clipped very short or they rip, but that seems to be the only long lasting side effect. I have echo's every 12-14 weeks and so far they remain normal.

KK1
DX stage IV age 45 March 2004
2 cm breast with 2 mets to liver (her2+,er+/pr+)
May 2004-sept 2004 weekly herceptin, taxotere, xeloda , NED sept 2004
Oct 2004 left masectomy
October 2004 Dec. 2006 Herceptin 3 week +aromasin +zoladex ovarian suppression- no progression and NED for just short of 3 years.
Was considering stopping long term use of herceptin when....
December 2006 regrowth of 1 tumor in same exact location in liver
Jan 2006- liver resection left lobe removed
(pathology of removed lobe contained only the single met)
Feb 2007-present continue 3 week herceptin + zladex and switched to Arimidex.

[Kathy T]

Hi Joe,
I have been on Herceptin since early 2003, No major side effects--fatigue and thin splitting nails.
Kathy T

[Edie L]

I have been on Herceptin and chemo non-stop since January 2004 after being diagnosed with BC Stage 4/mets to liver. I have had no side effects from Herceptin, few side effects from chemo, and my disease is stable at this this time.
Edie L.

[Gina]

I am STILL ALIVE...smile.

Been taking it since spring of 1999. Certainly one of the most effective drugs ever made.

Warm regards,
Gina