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Topic: Herceptin - Quick Side Effects Poll

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Feb 3, 2009 07:56AM

bluejay1 wrote:

Hi,

This is a quick & easy resource for the people who are going to begin Herceptin and the people already on Herceptin. If you are looking for what others have experienced, this is the place.

If you are DONE with chemo (or else the side effects are too tangled), please briefly list your Herceptin side effects and state which ones are the worst and which ones are mild, whether they decreased or increased with treatment. If they were bad enough to stop herceptin, please note this. Also, if you found a remedy for any side effects, note this too.

Include how often you get the herceptin (every 3 weeks, etc.) and how long you have gotten your herceptin-only treatment.

Even if you are not sure which side effects are caused by which medication or left over from chemo, include them here anyway. 

* Please only list Herceptin side effects for this thread - discussion of other issues in other threads, so people have an easy-to-read thread here! Smile   * 

Dx 1/2/2008, IDC, 1cm, Stage I, 0/3 nodes, ER+/PR+, HER2+
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Feb 26, 2009 03:46PM anitach wrote:

Barbra1,

There is a stop smoking thread on the "Help me get through Treatment" board. Good luck to you.

Anita

Dx 5/1/2007, IDC, <1cm, Stage IV, Grade 2, mets, ER-/PR-, HER2+
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Feb 28, 2009 05:04AM Navalex wrote:

Completed 1 year of Herceptin treatments - May 30, 2008

Noticeable Side Effects:

  1. Heart Congestion & Shortness of Breath - seemed to be temporary - improved over time - suggest doing cardiovascular exercise during treatment to keep your heart strong and reduce some of the symptoms
    1. Heart function has come back
  2. Chronic Coughing - went away when the Herceptin stopped
  3. Feet & Ankles Swelling, especially during the summer heat - suggestions: elevate your feet above your heart, I took Elixer of Hawthorn (must be alchohol based) which can be purchased at any health food store - use one tincture full of Elixer of Hawthorne to 2 ozs of warm water and drink it like tea - your swelling should go away and it will help increase the use of oxygen which may make your breathing easier. My doctors had no objection to my taking this. If you don't want this with alcohol in it, you can purchase it without alcohol but it won't be as effective.
  4. Infusion Reaction - 2nd Treatment - ended up in the hospital for a week - Read the pharmeceutical info on Herceptin - the paragraph that says "Adverse Reactions" and "Infusion Rate" - Have your medical staff give you the infusion over a period of an hour instead of a half hour and you shouldn't have any adverse reaction.
  5. The other symptoms that are being discussed - I have some of these, but I was given so much medication that I am not sure if the nail problems and other symptoms that are being discussed here are due to the Arimidex or residual side effects of the chemo drugs that were administered.

I hope this helps some of you.  Good luck to those of you that are on Herceptin! 

Dx 12/22/2006, DCIS, 1cm, Stage I, Grade 1, 0/5 nodes, ER+/PR+, HER2+
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Feb 28, 2009 08:32AM GointoCarolina wrote:

Does anyone have nausea from the herceptin? I finished my chemo a month ago(taxotere and carboplatin with the herceptin)Now on the three week cycle,just had herceptin on Thursday..I was nauseous all through the chemo and did develop gastritis so bad I was in the hospital.Was hoping the nausea was from the chemo and maybe it is just a lingering effect and will go away? I have always had a very sensitive sromach. I have taken ativan for the nausea,but doctor does not want me to stay on it,as it is so addicting.Jackie

DX8/2008 IDC,Stage 1,Grade 3,0/3 nodes,ER/PR-,HER2+ Uni Left Mast 9/05/08 chemo & herceptin... Proph Right Mast with TEs March 2010,April 2010 TEs removed due to pain
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Feb 28, 2009 08:54AM GramE wrote:

I had 12 weekly Taxol and Herceptin, then a break for lumpectomy.   Neuropathy (numbness) in my dominant (left) hand ring and little fingers - went away during the break and was back the day after my first Herceptin only.   I have H every 3 weeks until I dont' know when...   

The neuropathy is most annoying.  I try to put in "post" earrings and have lost more backs than I can count.  Solution:  wear lever back earrings.   When I am typing I sometimes do not know if I hit the key or not.  Opening jars and pull tab containers is HARD, so I use a pair of pliers for the pull tabs.   Someone suggested Isotoner gloves - unlined ones do help.  

I always have an extra bag of saline going at the same at herceptin.  It helps dilute it going in at "full strength".  The second H only I had chills and shaking from them.  This was during 30 minute drip.   Now I get it over an hours time and no chills.

Muga scan coming up.  Before chemo, during, and just before going on H only, mine was the same 69%.   My nose drips off and on, and "crusties" in the morning.   My finger nails are slowly growing, but still very sensitive at the finger tips.  

Some foods do not taste the same, especially my favorite:  crab cakes.  Cranberry juice is OFF my list - tastes AWFUL.  However, pineapple juice tastes wonderful...    

I have not had an eye exam in ages, but had previously needed reading glasses (for years). Now I do not need for reading, but find street signs when driving are blurry.   It could be age related, I am 63.  Eye exam is on "the list".   

No nausea, but a lack of appetite.  Nothing tastes satisfying.  I knew I was eating, but my brain did not process the taste factor.   Cool, cold foods, like lime sherbet, are better than anything hot, including soups.   Popsicles or frozen fruit bars also.    

Bone, joint aches most of the time.  Feel like the tin man in Wizard of Oz.  Stiff, creaky, achy.  I think that is about all for now !!!    

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Feb 28, 2009 06:16PM Navalex wrote:

bethanybeane,

I was on the same regimen that you were on - TCH, Dose dense every 3 weeks, all at the same treatment. I am also on Arimidex - your joint aches are mostly from the Arimidex and it will take some time for your body to adjust (my medical onc gave me a script for Prilosec-to protect my stomach from Naprosyn- and a script for Naprosyn - it helps with the joint pain, be it from Arimidex or Herceptin) Exercise will help the joint stiffness too. 

Dx 12/22/2006, DCIS, 1cm, Stage I, Grade 1, 0/5 nodes, ER+/PR+, HER2+
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Mar 3, 2009 04:51PM 08Survivor wrote:

Finished my TCH in August and now only have 4 more Herceptin treatments to go.  I have had a cough which seems to be getting a little better since chemo stopped.  My fingernails are very soft and brittle, which I originally attributed to the Herceptin, but my oncologist says that is due to the Taxotere and it has to grow out somewhat like a bruise on the nail.  I do find I am more tired after my treatments for about 10 days, but I found that also with my chemo.  Other than that, I really had no side effects except occasional peripheral neuropathy.  I do find my hair is taking a very long time to grow out and hopefully it will grow faster once the Herceptin treatments are over with!

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Mar 3, 2009 07:01PM moonchild64 wrote:

I have the nausea too... Herceptin #12 last Friday and, like clockwork, the next week I feel queasy and nauseous.  Can't be chemo as that was done in September.  Skin on tips of fingers is cracking and nails are splitting and brittle.  Never worried about my nails much, but they are pulling apart in places that snag on clothes, etc. 

Yes to tiredness.... yes to slow hair growth... and yes to drippy nose, esp when eating hot foods...

However, it's all minor and I'll put up with it all if it means Yes to No More Cancer. Wink

Dx 5/13/2008, IDC, 1cm, Stage IB, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Mar 3, 2009 07:51PM rosesinwinter wrote:

I had many of the same side-effects that others mentioned but it is still difficult to sort out effects from Herceptin vs Abraxane vs Tamoxifen.  But I also experienced a serious pulmonary reaction after receiving Herceptin every 3 weeks for almost 8 months. There actually is a warning for this side-effect on the label.  I ended up in the hospital for over a week with i.v. antibiotics, oxygen and lots of pulmonary testing.  This, interestingly enough, occurred at the same time that I was receiving radiation therapy so it was complicated to sort it all out.  But a bronchoscopy with lavage done 2 months later still showed an inflammatory reaction that was drug-induced.  I did lose a small amount of lung capacity long-term. My oncology nurses still shake their heads and tell me that I am the first person that they know of that experienced this reaction.  Now I see a lung specialist every 3 months also and am tracked with high-resolution chest CT scans.

Janet Dx 9/2007, IDC, 5cm, Stage IIIB, Grade 2, 4/11 nodes, ER+/PR+, HER2+
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Mar 3, 2009 08:30PM GramE wrote:

rose, I get MUGA scan every 3 month while on herceptin.  Had dd a/c, which can cause heart problems, then taxol and herceptin,  now herceptin only every 3 weeks.   They tell me problems w/herceptin will eventually reverse.  So far, my MUGA has not changed.   

I opted for NO radiation since I am left side dx and heart and lungs on left side.   Rads can cause permanent damage, and I did not want to add that risk.   Friend who has right side rads, after 2 weeks found out it caused bad lung problems - had none before.   She had to stop rads.    

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Mar 4, 2009 07:39AM rosesinwinter wrote:

Good morning Lefty!

It sounds like your treatment is going fairly smoothly.  That is great that your MUGA scans are staying so stable! When will you be done with your year of Herceptin? Hope all continues to go well.

Janet Dx 9/2007, IDC, 5cm, Stage IIIB, Grade 2, 4/11 nodes, ER+/PR+, HER2+
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Mar 4, 2009 10:58AM - edited Mar 4, 2009 11:01AM by arabrabw

i am midway through TCH, so i can't with certainty "untangle" my side effects.  i just want to say THANKS to angie27 for documenting twitchy eyelids -- i got the usual look of disbelief and mystification when i mentioned it to my onc.

Dx 9/22/2008, IDC, 2cm, Stage IIIA, Grade 2, 7/27 nodes, ER+/PR-, HER2+
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Mar 14, 2009 07:02AM GramE wrote:

I just got back to this thread.  Left over chemo brain???  Lol.   Since I had 12 weekly taxol and H, my onco has not told me how long I will go every 3 weeks on H only.   I really want to celebrate the final one, like a trip to Vegas and try to put that date in BIG RED letters on my calendar.   This is IF I have enough money left over after the co pays and deductibles.   It should be less than 2008, with all the chemo and surgery...   

Then I have seen an article or 2 about Herceptin for 2 years.   Next onco visit I will ask.   This tx, the drippy nose started 5 minutes after the IV was begun.   Anyone know where I can get a nose diaper?    

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Mar 14, 2009 10:10PM Juli50 wrote:

Roses - I just spent 11 days in the hospital... after 11 weekly Herceptin txs (1st 7 with Taxol), I suffered (best guess diagnosis) congestive heart failure from Herceptin, pneumonia, and pleural effusion. My effusion factor had dropped from 50 to 35. I was under the care of my oncologist, a pulmonologist, a cardiologist and an infectious disease specialist, all baffled by my lung problems. The onc wants to wait a month and if my echo shows improvement, try Herceptin again. I don't think so!

4 AC, Taxol 8 wks + Herceptin 11 wks, CHF from Herceptin, rads, osteoporosis, Tamoxifen 9/19/09 - 05/18/11, re-started Tamox 6/18/11 Dx 7/7/2008, IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2+
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Mar 15, 2009 05:47AM GramE wrote:

I have heard, read, been told if the heart is affected by Herceptin, it will reverse and is not permanent, but ((((((( juli ))))))) how horrible.   You got hit BIG time.  Prayers for a full recovery from it.   

I had H tx on Thursday, last night my legs felt like lead and this morn I am very stiff and achy.   Extra strength tylenol is in me and I do have some tylenol 3 just in case.    

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Mar 15, 2009 11:09AM Juli50 wrote:

Thanks, Nancy. I know the heart damage is usually not permanent, but in some cases the lung damage is. I have had asthma since I was a baby and my lungs have had many infections over the years. The doctors say I have Bronchiectasis, as a result.

4 AC, Taxol 8 wks + Herceptin 11 wks, CHF from Herceptin, rads, osteoporosis, Tamoxifen 9/19/09 - 05/18/11, re-started Tamox 6/18/11 Dx 7/7/2008, IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2+
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Mar 15, 2009 04:28PM rosesinwinter wrote:

Wow, Julie - you have really had a challenging time.  I am just getting back to this thread as I was busy/out-of-town for a week.  Just hang in there because you will make it to the other side!

I had several complications that made my oncologist shake her head but 18 months after diagnosis, things are good now. It sounds like you are really sensitive to medications also. I had an allergic reaction to Taxotere (changed to Abraxane), got pseudomembranous colitis from c. diff after my 2nd chemo, had to skip ahead to my surgery and then had the pulmonary reaction to Herceptin after 8 months.  Sometimes I thought that I was the only one having all of these problems!  But I had no tumor left in my breast after 2 TCH treatments SO I am thinking that my sensitivity to drugs was not all bad (or so I convince myself!).  I noticed that you also got the neuropathy (which I have) and that Neurotin was not the answer for you.  I just weaned myself off Neurotin because I was having crying spells when I got up to 400 mg three times per day.  Of course, that is supposedly a low dose for that drug but it affected me more than others. Oh, and my ejection fraction went down from 68% to 51% on Herceptin but has gone back up to 56% now. I SO hope that you will start feeling better soon. You seem like a real warrior!! And you are great at gathering info about your condition...

Janet Dx 9/2007, IDC, 5cm, Stage IIIB, Grade 2, 4/11 nodes, ER+/PR+, HER2+
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Mar 25, 2009 08:26AM GointoCarolina wrote:

I had my third treatment of just herceptin last Thursday. I have found the night after treatment I do not sleep well.I have been nauseous off and on,today is especially bad, but may be stress as I am having my port removed this afternoon.Some fatigue,but think that is a left over from chemo. I wish my nose would run,it all goes down the back of my throat,which is probably not helping the nausea! Occassional head aches,but need an eye exam,having some blurred vision which started after my very first TCH.I had diarrhea the last two times,none this time.Chills off and on too.I also find right after treatment that hot flashes are worse.My MUGA done the end of January was down from 68 to 63.. Jackie

DX8/2008 IDC,Stage 1,Grade 3,0/3 nodes,ER/PR-,HER2+ Uni Left Mast 9/05/08 chemo & herceptin... Proph Right Mast with TEs March 2010,April 2010 TEs removed due to pain
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Mar 25, 2009 07:49PM - edited Nov 3, 2011 06:15PM by sharont68

This Post was deleted by sharont68.
verymuchloved Dx 10/9/2007, IDC, 3cm, Stage IIIC, Grade 3, 12/15 nodes, mets, ER-/PR-, HER2+
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Mar 27, 2009 02:57PM jperry wrote:

I took 21 weeks of weekly herceptin then the rest of the year was every 3 weeks.  My EF went from 70 to 40 after the first 3 months.  I was put on coreg and it stayed the same until I finished last month.  My EF is up to 50 now after being done with herceptin for 5 weeks. 

 Symptoms were and still are drippy nose.  I couldn't bend over with out my nose dripping to the floor.  So embarrassing.  Joint aches and pains still.  I do feel 95 instead of 35 after sitting for a few minutes.  Extreme fatigue.  I used to need 6 or 7 hours asleep now I probably could sleep for 24 hours a day 7 days a week and still be sleepy.  I have gained 30 pounds and not eating bad. I exercise too-doing cycle classes and wt training.  Wt will not come off.  I hope I get energy again one day. I used to be thin and energetic and now I am a slothYell

I just had my port removed today.  Yippy

dx November 2007, bilateral mastectomy, chemo rad herceptin all finished. DIEP Dec. 11, 2009.
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Mar 28, 2009 05:53AM GramE wrote:

I am so sorry you gals are having side effects.   Someone said every drug has side effects and the best we can hope for is minimal ones.   Thursday I go for the routine MUGA scan - last one was in November, so I am a bit overdue for one.  But I was off herceptin from the end of October till the end of December for surgery.   

I know what you mean about the drippy nose.  It IS embarrassing - I made a nice dinner for my son & DIL and when I "served" the meal, my nose drip let loose.  Aches and stiffness seems to be the normal.  I can go down stairs, but going up takes me forever.  

Yesterday I noticed my eyebrows are shedding after they had grown back to bushier than ever.  I hope that does not mean my hair is going to shed again.  

Congrats on getting the port out.  I look forward to that "surgery" but have no definite date when I am done with Herceptin.    

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Mar 29, 2009 12:37PM Mozine wrote:

Has anyone with nail problems due to herceptin tried to have artificial or nail tips applied?  I would love to hear if anyone has an opinion Thanks 

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Apr 6, 2009 11:23PM bengal wrote:

I found once I was only taking Herceptin, I could positively say that it caused me to have

hip/back/joint pain-especially sitting! 

a runny nose

depression for about two weeks then feel better week before I had to take it again

heart failure-EF went from 55% to 25% had to stop taking it got a total of 12 doses (one every three weeks) My EF is back up to 40% with the help of cardiac drugs that I may have to take the rest of my life-oh well. Thank God I'm alive and healthy now.

Stay strong,

Anne

Dx 11/2007, IDC, <1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR-, HER2+
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Apr 7, 2009 08:00AM Juli50 wrote:

Anne - me too... heart failure, EF went down to 30, but it's back up to 40 now. Onc said he will not be putting me back on Herceptin. I had 11 weekly tx. Hope it was enough.

4 AC, Taxol 8 wks + Herceptin 11 wks, CHF from Herceptin, rads, osteoporosis, Tamoxifen 9/19/09 - 05/18/11, re-started Tamox 6/18/11 Dx 7/7/2008, IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2+
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Apr 13, 2009 12:10PM Voltie wrote:

Finished chemo TCH on January 8th, started Herceptin every 3 weeks/90 minute infusion.  Now have muscle aches/joints in hips, knees, shoulders, neck and across shoulder blades. Lost eyelashes, never lost through chemo, they are growing back, runny nose; which makes my nose have sores and will bleed.  Also gained weight.  Will be complete Herceptin in Sept '09.

Voltie Dx 7/2/2008, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER-/PR-, HER2+
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Apr 21, 2009 08:54AM WendyTY wrote:

I've been on Herceptin since August 08.  Started Herceptin only in January 09.  I seem to be one of the unusual ones that reacts to the drug.

First two Herceptin only treatments I had chest pain - ended up being pleurisy.  Added benedryl to my IV before and it went away.  Also caused issues with my asthma which was under control before.

Off and on I have fatigue, bone and joint pain, headaches, chills, hives, runny nose, eye lash thinning (multiple times), numbness and tingling in my arms and legs, diarrhea, and acid reflex. 

Looking forward to it being finished. 

WendyTY Dx 8/20/2010, IDC, 3cm, Stage IV, Grade 3, 2/24 nodes, ER-/PR-, HER2+
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Apr 23, 2009 02:05PM - edited Apr 23, 2009 02:05PM by TERI-018

THANK GOD I FOUND THIS WEBSITE.I WAS ACTULLY LOOKING AS TO WHY SENOKOT S WAS RECALLED AND SOMEHOW FOUND THIS .JUST READING THE MESSAGES MAKES ME KNOW I AM NOT GOING CRAZY. I WAS DIAGNOSED IN APRIL 08, SURGERY AND RECONSTRUCTIONIN MAY, BEGAN CHEMO ALONG WITH HERCEPTIN IN JUNE...FINISHED CHEMO BEGINNING OF SEPT  08, BUT HAVE CONTINUED HERCEPTIN EVERY 3 WKS , HOPEFULLY I`LL FINISH IN JUNE.

BUT HEARING ALL THE SAME FEELING I`M HAVING WAS A RELIEF...RUNNY NOSE, FATIGUE, THINNING OF NAILS, TOENAILS TURNING BLACK, I JUST FEEL AWFUL AND I WAS NEVER ONE TO BE SICK OR SIT STILL....I`M COMPARING THIS AS TO WHAT I WAS LIKE BEFORE...........VERY ACTIVE  PHYSICALLY, NAILS SO STRONG YOU COULD USE THEM FOR GUITAR PICKS....

THE ONLY THING I HAVE NOT HEARD ANYONE SAY ....IS BEING CONSTIPATED, EVEN THE CHEMO MADE ME IMPACTED ( A VERY HUMBLING EXPERIENCE). I AM GLAD TO KNOW FEELING LIKE A SLOTH IS NORMAL AND THE WEIGHT GAIN,... NOTHING SEEMS TO HELP....WASN`T THIS BIG WHEN I WAS PREGNANT..........ENOUGH WHINNING, JUST GLAD TO KNOW I`M IN THE NORMAL RANGE.....I ASSUME IF I CONTINUE TO READ ALL THE MESSAGES I`LL FIGURE OUT ALL THE INITIALS YA`LL ARE USING......

OH YEAH, I`M A THIRD GENERATION BREAST CANCER PATIENT...GRANDMOTHERS, COUSINS,ETC.........

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May 1, 2009 07:41AM GratefulGal wrote:

Wendy - you and I seem to be in good company! I also started Herceptin in August of 2008 and Herceptin only December 2008. Right after I finish treatment I am fine. I usually feel a bit tired that evening, but then come the chills, fatigue, achiness which really doesn't last too long. But the last couple of treatments I've experienced diarrhea, back pain, runny nose and extreme fatigue for several days. My eyelashes and eyebrows are falling out AGAIN, but the hair on my head seems to be holding tight! LOL. Although it is slow in it's growth.

Right before my treatments, I actually feel great - so it does let me know that it is temporary and it will pass! 

Best to you all - this site has helped me tremendously!  Trixie

Trixie Dx 2/22/2008, IDC, 1cm, Stage II, Grade 1, 1/4 nodes, ER+/PR-, HER2+
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May 9, 2009 07:30AM Lisa1964 wrote:

Well, now I know why the bathroom scales keep rising.

Weight gain, drippy nose, muscle fatigue low energy level.  I have had 3 Herceptin only treats.  I will get it every 3 wks until Oct. 2009.

Lisa

I attacked and I won! www.JohnnyRebelAcres.com Dx 8/28/2008, IDC, <1cm, Stage IIA, Grade 1, 2/17 nodes, ER+/PR+, HER2+
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May 9, 2009 07:51AM KLynn wrote:

All I can say is Sinuses Sinuses Sinuses...try and keep ahead of the problem before it turns into an infection, or you are so blocked up that you end up having surgery......Been on it for 3 1/2 yrs this time around...1 yr. first time.....been using Neti pot and it really helps with prevention..Hugs KLynn

How lucky I was to have known someone, that was so hard to say goodbye to.... Dx Stage IV, 6/17 nodes, ER+/PR+, HER2+
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May 9, 2009 11:22AM snowyday wrote:

I am noticing so many women with weight gain and feeling fatique on herceptin and boy I am sorry we are going through this, but I am so glad to know that I'm not the only one.  Now that the weather is warm I am feeling so desparatly upset over this weight gain and tiredness. I can't even rake my little yard and clean my deck with out beign totally winded.  And I ended up with a huge chunk of neuropathy on my right upper leg.  It's horrible and now I have to see a specialist about neuropathy.  I just want to know why we need it for a year when Finnish and a New Zealand Study says it's works just as well for nine weeks.  I constantly check for email about new info on Herceptin and found a bunch of them when I googl herceptin and hype.  I'm amazed at some of the studies and info.  Good luck everyone and big hugs.

PN Dx 5/24/2007, ILC, 5cm, Stage IV, Grade 3, 0/2 nodes, ER-/PR-, HER2+

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