Lisa.

I know I grind on about diet and balancing the omega threes and sixes but.....

Asthma is an inflamatory related condition and some writers link excess omega six to asthma.

Dry are are definately helped by balancing the threes and sixes and taking DHA - I can vouch for that personally.

Smart Fats M Schmidt is a whole book essentially about the importance of omega three and particularly the long chain omega three DHA and its impact on brain health - mental alertness, tiredness, ADHD, MS, Bipolar, age realated degeneration..................................

DHA is fundamental to eyesight.

There are lots of links click on search above right.

If you have time and are interested you can find Smart Fats second hand on the WEB.

We have only had access to high levels of cheap concentrated omega six sources oils for the last say 100 years. Fats are fundmanental to our existance and have a role directly or indirectly in many of the bodies functions

I am passionate on the subject. At the worst it should improve your general health - even the doctors sites are officially accepting omega three is important to cardiac health, at best a few studies have suggested risk reduction factors as high as seventy percent.

As always do talk to your advisors about magor dietary changes.


RB

RB - I've noticed your posts about the omega 3s and 6s

I've been overwhelmed with work and mommying - but will be taking an extended sick-leave beginning mid-June and will be able to focus on things like diet... my eating habits have gotten worse -frighteningly worse - since diagnosis - stress and lack of time and energy have turned me into a prepared foods eating person - which I know is bad - but I simply cannot even go to the grocery store - my husband loves junk and that's all the family has been eating

I have 5 weeks to go and some changes will happen!

There are lots of sites selling fish oil, but here is one I have found recently that is very reasonable, and the product looks like its OK. Life extension are state of the art but likely more expensive.

I have only just ordered and it has not arrived yet but I do not anticipate any problems.

Here is a link for fish oil - they deliver. Your bodies take up tails off at about 2grams a day.

http://www.vitacost.com/CarlsonTheVe...ishOil-169floz

You can significantly alter your breast tissue composition in about three months according to reports in trails.

Processed food generally all has vegetable oils in it and so is high in omega six.

Smart Fats also deals with impact of DHA deficienies in young mums PND etc. as apparently the developing child grabs it even from the mothers brain, and the importance of DHA in development etc.

10/10 for coping with work children BC and a home,


I hope things look up.

RB

Poor eyesight in one eye
 

Hi, Marily:

One thing jumped off the page at me in your post. You mentioned poor, almost nonexistent eyesight in one eye only, other eye was fine. As you've had a lot of other small issues with your eyes it is probably nothing to worry about, however, I had a similar situation which I ignored for awhile and it turned out to be a small brain met. Actually it turned out there were two. I had gamma knife a year ago and continue to be NED so all's well that ends well.

I passed the symptoms off for awhile because it was transient, happened only in one eye, when lying down, when the moon was full (ha ha). If I jumped up and turned on a light I could see perfectly! It never happened in the daytime so it was really easy to forget all about it (what, me worry???). Finally I got up the nerve to mention it to my GP who referrred me to an excellent Neurologist. Unbeknownst to me, the Neurologist had studied Neurologic Oncology at Duke. She too was (seemingly) baffled by my symptom but did order a brain MRI et voila, two small mets.

Brain mets are easy to treat early on. I certainly hope that's not what's going on for you but it wouldn't hurt to take a little peek.

Mary

brain mets and sight
 

Mary, I see my onc tomorrow. I will be certain to tell her.. I almost forgot about it. : (
Thank you so for the note. Hope it was a fluke but I agree it is definately something to look into. I know many friends who also had their breast mets go to the brain.. Hugs and thank you again
Marily

Marily, I'll keep my fingers crossed that it is just another side effect of Herceptin. Good luck and God bless.

Mary

dx May '05 invasive lobular..stage 1 small 7mm tumor, ER+PR+ Her2+, Oncotype dx predicted high-intermediate risk for recurrence.

Bilateral mastectomy June "05
4 rounds A/C
started herceptin Oct. '05-every 3 weeks
arimidex for 5 years

MUGA's holding steady at 65%
side effects:
joint pain
crusty nose, bloody noses, stuffy at night-hard to sleep
insomnia
word recall problems-stutter for the right words
swollen ankles
weight gain-10 lbs

I am on herceptin every three weeks, almost one year now and finished chemo a year ago. I have noticed that my fatigue has gotten worse while being on herceptin. And it seems like the longer I do it the worse it gets. Memory problems have also gotten a lot worse. I've had splitting fingernails and small weight gain that is almost impossible to get rid of. I developed a rash that has since gone away with treatment of it.

I am on herceptin every three weeks for one year ending in November and finished chemo 6/05. My symptoms are:

* swelling in hands and feet
* elbow/knee/shoulder pain. Shoulder pain so severe began physical therapy to regain mobility
* thinning hair (began after herceptin;hair growth after chemo was definitely thicker)
* feeling weak and unwell (after start of herceptin but has improved since acupuncture treatments)
* hot flashes and vaginal dryness (after start of herceptin but no longer an issue since acupuncture treatments)
* loss of words; general cloudiness of thought
* low white blood count
* vision change
* general bloating in midsection;not much weight gain but increase in body fat everywhere (arms, thighs, around waist) that seemed to happen in matter of months
* degradation of gum health. Prior to chemo always had 2 gum pockets that were borderline deep. Went to dentist in January (after starting herceptin in November) now deep pockets all over and recommending gum surgery! Additionally, gums bled every time I flossed or brushed (didn't happen during chemo). This subsided once I began taking COQ10.
* minor acne
* early on sometimes felt as if I couldn't get enough air (haven't experienced in awhile)
* runny nose, crusty in the morning (initially experienced quite regularly..no longer an issue)

side affects
 

I had Herceptin with the taxol for once a week for 12 weeks straight and really didn't see/feel any significant problems. Now I'm on Herceptin once every 3 weeks for a year. After the first infusion, the following week I noticed my thumbs were achey and throbby. Mainly in the joint to the hand. As the weeks progressed for my 2nd infusion, fingers started to swell, slowly. No problem with ankles or feet, though.

O.K. so now I've had the 2nd infusion and the pain is unbearable in the thumbs, extremely stiff leg muscles and back muscles. If I drive for 30 minutes straight, I look like a 110 yr. old person getting out of the car. Once I get going, it's ok, the back muscles and leg muscles seem to sort of relax. Not the thumbs. I finaly called the onc and they put me on Celebrex. Doesn't make me feel completely limber, but the pain is much better. I can now write my name without cringing in pain.

So, if anyone else is experiencing these joint, muscle pains, be persistent and see if they will prescribe something for you to help you through the rest of the herceptin infusions.

Ya know, all of this just wipes you out, and we're having an early summer heat wave out here which just makes it even worse. If I can get one thing done during the day, I feel like I at least accomplished something other than just being a lump of body pain.

Herceptin Recall?
 

I've heard of radiation recall, but I wonder if there is a Herceptin recall. I finished Taxol one month ago. I had weekly Herceptins and just got my first triple dose last week. My Herceptin side effects are similar to taxol's -- tingling in fingers and toes, redness across nose and cheeks which clears up in two days. Does Herceptin have some of the same side effects as Taxol or is this Herceptin recall?

I began herceptin in November 2005 with taxotere when I finished chemo with adriamycin/cytoxin. When I finished taxotere January 2006, I continued on with herceptin every 3 weeks and will continue until November 2006 (Stage IIA-B, HER2+++, ER/PR-). I finished rads mid April 2006....I teach first/second grade full time and try to exercise as much as possible.
I gained 35 pounds from August (time of diagnosis and beginning treatment) through December, but then through diet and exercise, lost 17 pounds. I am at a point now that I cannot seem to lose any more of the weight....although I have started back playing indoor soccer 2 X each week, teaching full time, and riding my bicycle to work! My weight gain is also mostly around my middle....I have never had a belly in my life and now it is huge!

I also have swollen hands and feet....nose bleeds each morning....and some nasal conjestion....my knees and feet ache....feet ache particularly when I first get up to walk....chemo brain....and the smell after infusion is gross!

I also am a stockholder of Genentech....and am thankful for herceptin!~
I have never been asked anything about my lifestyle or symptoms by anyone...THANKS FOR ASKING!!!! http://www.her2support.org/vbulletin...lies/smile.gif

kat in the delta
 

kat in the delta
 

Sandy, Do you have pain and take pain meds. for Herceptin side effects??? kat in the delta

I started herceptin in April 06. I've had 3 doses and so far so good. I have noticed that I get a headache the day and day after I've had it. I've also been having very dry itchy eyes, a raspy throat, some slight congestion and yesterday noticed an itchy rash on the arm where I have the IV. I've been putting the latter 4 symptoms down to allergy -- this is the time of year when my allergens would begin to bother me. I still have some stiffness and low back ache but I've been putting that down to lingering side effects from taxol. Hard for me to say if this strictly herceptin, not herceptin at all or a combination of allergy/lingering side effects and herceptin.

I'm to have herceptin 1 x 3 weeks for a year. I'm a stage II, er/pr- and her2+.

Herceptin since Jan 2002
 

Hi Lani -
Looks like there is a lot of info developing here.
Diagnosed Sept. of 2000. Lumpectomy, axcillary node dissection.
8 of 18 nodes positive. Hormone neg/neg.
Was already in menopause for about a year prior to dx. No hormone therapy ever.
I started Herceptin weekly (vitamin H - just add it to my supplement list!) in the beginning of January in 2002 along with Taxol and Navelbine for agressive mets.

Herceptin alone plus Zometa since July 2002.
Herceptin tri-weekly since July 2002. No breaks ever necessary.
Had a lot of side effects early on, but they have gotten better little by little, so I attribute most of them to all the various chemos I had in a short period of time.

Still noticing:
* Leg, foot and hand cramps from time to time - take Quinine that helps a lot.
* Some bone, joint and other aches and stiffness. Attribut some of this to the ANA positive situation that has developed with me. Not enough to interfere much with things I need to do.
* Intermittent runny nose and eyes. Not severe and take Allegra as needed for seasonal allergies.
* Skin peels on forefingers. Nails in good shape. Hair grows normally.

No stomach upset or gas problems beyond normal. No headaches.
Cognitive functions mostly ok.
Blood counts and liver functions stay well into the normal ranges and tumor markers are steady like a rock. ;-)

NOTE: I do get my infusion over 45 minutes - this seems to alleviate the slight flushing and redness that can occur if a shorter infusion. The infusion suite nurses say that other patients like a longer infusion as well.
I also hydrate myself very well and drink water and eat during my infusion.

Really feel fortunate this this drug is so benign as far as side effects for me. I still have some problems due to all the taxanes and the rest.

I work hard to eat well and get some proper exercise but get hit hard again when my brain acts up. After the Gamma Knife in Jan of 2005, I was a mess again. Fought my way back to good health and then had a brain surgery in Feb of this year. Getting back to normal from that now with the exception of a fluid pocket that has formed at the surgery site and needs attention.

P. S. There is NO follow up on those of us who got Herceptin as Stage IV. I asked about that in San Antonio to Genentech reps and they seem to think it is up to some recognized researchers to get a study together that approved by the FDA. The docs do not report to Genentech as far as I know.

Dx Oct 05 Early IDC / Stage 1 / Lumpectomy / Her2+++ / 1cm / grade 3 / neg nodes / ER+ PR weakly+ / post menopausal
AC every 3 wks x4: Had changes in vision; beginning echo 71%; end echo 58%; white counts down once (had neulasta shot). Only slight nausea. Fine otherwise.

Herceptin/Taxol every wk x12 :
Half-way thru, echo = 65%; blood counts all ok except low iron mid-way thru. Received something in chemo 3x to bring back up; hair growing back thick & full;
Rosy cheeks for 2 days after trtmts (blame Herceptin);
Numbness & swelling in both feet,ankles. 20 mg lasix/didn't help; Don't know what to blame; tested for leg blood clot=neg;
Bloated (blame steroids);
Developed acid reflux (Taxol or Herceptin to blame?) Taking prevacid resolved problem;
Vision getting worse (goes back & forth); Started during AC, but now that I'm off of it I don't know what to blame.
Became short of breath upon excertion & very dry crusty nose; Nails splitting,peeling easily & sometimes got mild pain in pelvic area (ovaries?) Blamed Taxol for all of that.

Herceptin every 3 wks (just had 3rd dose)
shortness of breath & nail splitting & crusty nose & sluggish feeling & pain in ovaries area disappeared; now have:
Had runny nose (I blamed Herceptin); No more runny nose after 3rd tx.
Swelling in left foot & ankle much much worse; slight swelling in right foot & ankle (40 mg lasix not helping; I think herceptin responsible; dr says she doesn't think so). Sending me for Muga (it's time) and to see a cardiologist just in case.
Cardiologist did ekg; came out fine; Said ankle swelling is due to water-retenion.
Vision still bad, especially 1 week after Herceptin tx (near & far-sight); I blamed earlier AC treatments. Don't really know now, since it is continuing. Since it's worse for week or so after Herceptin, I blame Herceptin for current vision problems.
Sometimes slight wave of pain in sides of neck for few seconds; I blame Herceptin; Onc said not from Herceptin;
Now after 3rd tx, I am getting more cramps in neck; Actually had severe muscle spasm in neck (under left chin area after trying to stop a yawn).
Still taking prevacid for acid reflux developed during Tax/Herc; Now actually getting gurd. Due to Herceptin?
Was emotional:cried easily (happy & sad) for about 1 week after 1st 2 tx. Was also crabby during same time. I blamed Herceptin. Dr says no.
Cracking in jaw (tmj) worse. I blame Herceptin.
Hot flashes much stronger than prior to any Herceptin (could be because hot weather is here now), but I think Herceptin contributing to it;
Trouble sleeping (sometimes due to hotflashes, sometime not) I blame Herceptin;
This past week have felt a few flutters in heart area. Onc says probably esophageal spasms leftover from taxol tx. Cardiologist said heart ok on ekg. Swelling in feet results in numbing toes (left over from Taxol?). Don't know.
Becoming scatter-brained; Have to search for words at times. (I blame Herceptin)
Other than that....doing great!

Herceptin has been easy for me. I had fever and chills from the first loading dose. My nose runs a bit more and is crusty and my nails are not great. Sometimes I am a little tired the next day. However, I have to say that if I didn't know that I was on Herceptin, I probably wouldn't even notice these slight symptoms. That is not the case with Navelbine and Zometa which I currently take for minor bone mets which have popped up. I really get achy from Zometa and fatigue and aches from Navelbine. Last week my chemo nurse advised me to take 3 advil the first night I received Zometa and three the next morning. I teach third grade, and went to school the next day and did fine. Advil seems to do the trick to make it through the first few days. Two years ago I didn't have bone mets, but had it everywhere else, liver, lungs, nodes throughout, and skin mets. Herceptin alone got rid of all of that until March of this year when my tumor markers were starting to rise and bone mets were confirmed. I just hope that I am now not resistant to Herceptn. My CEA is currently 1.3 and CA27-29 is currently 20 so the combo I am currently on seems to be working. I just want to be able to get off the Navelbine at some point because it really has done a job on my blood counts. I think Herceptin is like other drugs and food. There are common reactions, but drugs and food can affect different people differently.
Best wishes,
Barbara Holz

7/2004 Lumpectomy
Infiltrating Medullary Carcinoma
Stage 1 no grade, 1.2 cn.
HER2 3+ ER/PR negative
4 A/C 33 rads.. finished 12/23/04
Herceptin started November 2005, every 3 weeks, 90 minute infusion for 1 year..

When I first started Herceptin, my nose ran constantly, bled a bit and was very crusty.
Now, it still runs but not quite as much. I have always and still do get little balls of mucus that form in the nose and stick inside. I am constantly trying to pick them out since they do show and it hurts and bleeds, some. I did read here a while ago about the Ayr Saline Nasal Gel and have been using that. This week, my one nostril was so swollen and red at the tip for 4 days. I looked like a drunken sailor, as the saying goes! I did try hot compresses inside and out of the nose to soften them. :(
I will talk to my Onco about some of the meds mentioned on this board by someone earlier.
I also have shredding nails and pain in my knees, "sometimes" when using the steps.

Let me say, for me, these are all tolerable and worth it as long as I can receive Herceptin.. Bring on Wednesday! :)

Maggie BTW....... Thanks for starting this thread again!

HER2 Side Effects ME2
 

DX
Stage: IIIA
IDC
9/9 Nodes Positive
ER/PR -
HER2+++

TX
Lumpectomy - Aug 05
AC/T - Sept 05
Herceptin started w/Taxol
36 Rads - Mar 06
Herceptin weekly until mid Dec 06

Side Effects
Foggy, foggy memory - lost words all the time (look like fool at work)
Headaches - don't really hurt, more like a pressure, like I have a cap on
Woozyness - only occassionaly (so it makes me think I'm making it up)
Bursitis in shoulder - for a several weeks, now gone
Tennis Elbow - started after bursitis finished, this comes and goes
Depression - I have reason to be depressed, I'm in tx for bc
Weight Gain - Overeating could be reason, but am I craving because of "H"?
Split Nails

DX as Stage 2, IDC 9/04
ER and PR +
Her2+++
Chemo put me in menopause at age 51
Lumpectomy (tumor 2.5 cm) Sen Node(Neg)
A/C(4)
Rads(33)
Arimidex
Begain Herceptin Aug 05 for one year. Every 3 week dose.
Had infusion reaction on loading dose. Chills. Now premedicated with Tylenol and Benadryl.

Side effects: Crusty nose to begin with, now it just runs. Very dry eyes. Nails are thin and do not grow much. Eye brows are thin on the outer edge. No hair growth much on legs or under arms. Head is OK except is grows much slower. Cannot sleep and have night sweats, again may be the arimidex. Weird dreams. Pain in neck. Just developed basil cell cancer on side of nose. Will have microsurgery for that. Joint stiffness especially in hands and feet. Swelling of hands in mornings. Urine is more yellow. May be damage from chemo. Cannot get enough air when lying down(sometimes) Capillaries in shins burst. Looks like a rash. Does this make sense - I cannot walk as fast as I used to. It could be from weight gain of 20lbs. I feel I have to think about walking but I cannot think fast enough to walk fast????

Hello all
I am finding this post very interesting as I just finished my last Taxol 2 weeks ago and am now continuing on with weekly Herceptin. I have been wondering what if any side affects I may have now so this has been helpful to me. I have been on a disability leave from work and am wondering if I should now (since I am just on Herceptin) ask my onc to release me to go back to work. However what I am finding is that when I am at home doing my regular routine of housework etc I do pretty well BUT when I really have to use my brain it just doesnt want to function. For instance my husband and I went to see our accountant yesterday and I had absolutly no attention span and felt like crying I was so frustrated....could not GET what he was saying at all. At my last onc appt I told him that I had driven up to the gas pump to get gas and could not for the life of me figure out how to pump the gas. He said that may be due more to age than anything. Ok so I agree with him SOME, however, before all of this for god's sake I knew how to pump gas! I am going to have reconstructive surgery but have to wait 3-5 months after my last Taxol treatment. So I would only by back at work for a short time as it is. Oh all of these things to consider and decide on....it's never easy is it? Any thoughts?

Hi bobbi,

I've had lots of time to think about Herceptin. Just finished #90 of my weekly infusions.

One thing that "got" me in your message was how many docs attribute things to old age.... Give us a break.

Being bombarded with chemicals has to have some effect on how the body and mind function. Just how much effect there is on memory has not, thus far, been established.

Based solely on personal experience, my feeling is that my particular types of memory loss are mostly related to stress. Many times I am too stessed or preoccupied to hear information in the first place so, of course, I won't be remembering it.

The other memory problem I have is inability to remember common words. I really think this is also stress-related. When a person is under stress, it's difficult to focus on things other than whatever it is that is causing the stress. This is good: It helps save lives in the face of grave or imminent danger. For many of us, however, the stress is underlying rather than imminent and tends to creep into all daily activity (a real nuisance).

I am not ashamed to be having problems like inability to remember words. After all the things that I/you/we have gone through, we are entitled to be a little frazzled and we are entitled to a little love and understanding.

My coping mechanism is to have a sense of humor. When I cannot remember a word, I substitute the word "bucket." Don't ask me how that word ever came up or how I can ALWAYS remember it, but it works! My husband has become "smart" enough to even figure out what word I really mean when I use "bucket" in conversation, e.g., "Could you hand me the 'bucket,' I can't quite reach it?"

I hope this encourages you to hang in there and to be proud and happy that you are alive and can even be thinking of going back to work.

Love you!!!!!! ^,^

Hi;

Diagnosed stage 3c in October 2004. Postmenapausal.....for a number of years...I found once my periods ended I forgot all about them so can't remember when I stopped....lol. Following lumpectomy and additional biopsys started chemo mid January 2005. 4 AC, 4 Taxol. Tested for her2 and found to be borderline so began herceptin with the last taxol treatment. Am on Arimidex. I don't know my MUGA in the beginning but am tested every two months. I have been off herceptin 3 months. Originally for low MUGA of 42 (the previous two scores were 48 but onc let me stay on....he pulled me off when the score dropped again). The last test has shown my score to now be 52 but my heart remains enlarged and so he is waiting to see if this corrects before he puts me back on. I had a wee bit of swelling to my right hand (non cancer side) and my right foot during treatments towards the end of taking herceptin. I had weak nails which are still weak, and a runny nose...which is still runny sometimes now but not as often. I have various aches and pains in my joints but that continues and could be the arimidex or the biophosphanate I just started taking (can't remember the name right now). I take it every Friday morning (1x week) and am heading into my third week. I took herceptin every three weeks.....and REALLY want to get back on it.

Cathy

Karen thanks for your reply. I just returned from my weekly treatment and broke down and cried to my wonderful onc nurses...gees what a baby huh? But it felt good to talk about it. I too deal with almost every situation with a sense of humor but sometimes I get so tired of being the strong one and I guess this is one of those times.
Thanks again.
Bobbi

first infusion of herceptin yesterday
 

I had my first infusion of herceptin yesterday. Currently I am on NO other medication. I was tired yesterday due to the anxiety etc. Last night I had fever and chills. Fever reached 100.5 and I called the doctor. They were not concerned unless it went above 101. The fever is gone today and I feel dizzy but that is passing also.

1. Joint Pain!!

2. Nose Bleeds - just drips right out sometimes 2 times a day.

3. Chest tightness - feels strange to take a deep breath

4. Sinus pressure and headaches

5. Diarrhea

6. Weight gain

7. Eyebrows won't grow back after chemo

8. Pimples - pretty consistently right after treatment
9. Very tired after treatment
10. Have trouble reading, I've really had to slow down


Stage 4, 2nd dose of 3-week Herceptin 6mg/kg, NED, 31 years old

tykerb is the drug that supposedly crosses blood brain barrier...I've heard of epirubicin being used as an alt. for adriamycin...take care maryb

I have been on Herceptin since June 15th of this year, along with chemo. I started them at the same time, so I don't know for sure which symptoms are related to chemo and which ones are related to Herceptin. Some of my symptoms are weight gain, water retention, sinus problems, bloody nose, tight chest, anxiety or feeling wired, troubling sleeping or sleeping too much, fatigue, sore muscles and sores in my mouth.

what kind of joint pain?
 

Hi all,

I've noticed alot of women have mentioned joint pain as a side effect. I've completed 33 of 52 weekly treatments, and over the past few months have started experiencing pain in my back, legs and feet. It feels like I imagine arthritic pain would feel like. Last week after my annual visit, my doctor ordered blood work to check if this is thyroid or arthritic related.

For women who are experiencing joint pain - do you notice more creaking and crunching? I hear crunching around my knees and shins when I go up and down stairs. To me, that sounds like arthritis. I started taking glucosamine, but my blood pressure has gone up (a known side effect) so I'm thinking of switching to glutamine.

- Anna

I have noticed the soft fingernails and likely have other symptoms as well as I do get arthritic pains in my hands particularly. I don't really pay much attention to these as I don't know if they're from the herceptin, arimidex or actonel. However, I was taken off herceptin for four months and have just been back on it for the past three weeks....getting my fourth weekly treatment today. I was fine during week one (following the loading dose) but after my second treatment I started having dizzy spells. These would be getting up from bed or even as I lay there and I would almost fall over. I've never had them before and had about 5 or 6 of them over a weeks period. Naturally I was concerned about brain mets and so I mentioned them to the nurse during my last treatment and she sent over the on call doctor. We decided to monitor them going forward and if they weren't resolved within more weeks I would get a brain scan. My last CT scan (taken about 4 months ago) was clear except of an old brain injury I didn't know I had. In any case I have not been dizzy this week at all and so am assuming that it was caused by the herceptin. I had a muga done last Friday but no word yet from it so it must be ok I'm thinking. Hope this helps.

Cathy

Hi All,

Below is what I know about the timeline and my experience with BC and Herceptin. I don't have all of the specific details like some of you who seem to be so well educated on the subject. This is as much as I know. Thanks for the questions and answers, my doctor always seems interested when I report back to her what I read.

32 yrs old BC - 89 Rt mastectomy - CAF for 6 months ER+PR+ stage 1

42 yrs old BC - 99 Lt mastectomy - precancer foci (sp) no further treatment stage 1 again?


46 yrs old - 04 Hysterectomy and Implant revision


49 yrs old - stage 4 - bones, chest wall, skin - started with Femara in trial 50% chance Lapatinib or Placebo (Zometa once per month) for 12 weeks. Mixed response after 3 months. Switch to Herceptin / Gemzar weekly for 3 weeks (Zometa monthly). Could not tolerate Gemzar for 3 weeks on and counts dropped too low. Switch to weekly for two weeks with a double dose of Herceptin on second week and week 3 off. Very bad headache similar to a spinal tap headache after the double dose of Herceptin. Pain was like an explosion of pain to the head when I began to move or once I stopped after moving. This happened on the day after treatment. This happened two times. Changed to 2 weekly doses of Gemzar / Herceptin and week 3 Herceptin alone. No more headaches. Received Herceptin about 14 doses so far.

So far so good. I try to drink as much as possible (6 to 8 glasses of water) for the 3 days following infusion. I think this helps me.

Carolyn

Hi,
I am new to this forum, but I just wanted to say that I was on Herceptin for 5 months, first four months every week, last month every 3 weeks, dbl dose, had runny nose, legs ache, and some rib pain (actually a lot) but it really wasn't to bad,
but unfortunately it didn't help me much, now I will be going on Taxol and Avestin, could someone please tell me your experience with these chemo's, thank you very much,
Carol E

Stage I BC. I took Herceptin every week while on the Taxol chemo cycle. Once chemo was done, I was switched to every 3 weeks for a 90 minute drip. I must say I don't know if the side effects I have are from Herceptin or the Arimidex I am taking. I was started on Arimidex immediately after the Taxol cycle was finished. I had 3 mingraine headaches during the Herceptin routine. My nose was not stuffy. It is actually the opposite. It is always runny. Memory is an issue. I had more short term memory loss issues after my chemo was done. Again I can't say if it is the Herceptin or Arimidex. I also seem to have spells of insomnia that still persist. Not every night, but several times a month. I just don't sleep too well. Always in a light stage of sleep.

Hope this helps you in some way.

I have soft fingernails and the skin on the bottom of my feet peel quite a bit. So much so that I get pedicures every 6 weeks (and I never got pedicures before).

My nose is runny and my vision is off. I also have the "can't find the right word" syndrome (which can be from Arimidex). I am tired, especially the week I get the Herceptin. I have been on Herceptin since mid June, 2005 but will end soon (Sept 29). I also feel that my allergies have gotten worse (but this may be coincedence).

I also feel my hair doesn't grow as fast as it used to (this may be due to Arimidex as well as it is a menopausal symptom). I also get chocolate cravings for about 24 hrs but no weight gain.

Kind regards

Becky

Hello,


I can relate to the rib pain. My left rib area often hurts. I'm done with herceptin Oct. 11th and look forward to seeing what happens to my body post herceptin. God willing my body goes back to normal. Whatever the heck normal is. Haha!

I can live with any kind of pain though from all the chemo's/herceptin to be honest. It's better than cancer.

This was a good idea for others to list their symptoms. I was happy to read I wasn't the only one with rib pain (only left side) and occasional dizzy spells.

Mary Jo

I started herceptin in June and take it every 3 weeks. I had a reaction to first dose - chills & fever, but seem to tolerate it now and take benedryl and tylenol with my treatment. I am also on Femara. I think I can attribute some of my ailments to herceptin and some to the chemo. My runny nose, swollen feet, and dull pressure-type headaches are probably from the herceptin. My arthritis is much worse now in my hip and back, but I gained weight with everything so I know that affects my arthritis. The hot flashes are from the Femara and I take 37.5 mg of Effexor for that and it works pretty well. Since I had chemo first, I believe my insomnia started then but I still have it and must take a Xanax and an Ambien to sleep. My mental problems and toe/foot numbness also started with the chemo. Actually, I think my brain is working a little better now. After almost a full year not being able to read a book, I've finished two in the last month. Although I must confess I thought I was going to have to describe Ambien as "bucket"! I couldn't remember the name. I have had the "air hunger" too. I thought it was because of my heart, but it mostly happened at night or when I got into a hot car - it was over 100 degrees most of the summer. I got this tip from my dog. She's a fat black lab and when she pants she will put her face up to the fan. I tried it at night and it seemed to work - the breeze helped me gulp air better. I would just turn it on when I needed it. Herceptin is my wonder drug and I can manage all of these side effects just to be able to take it.

I am Stage IIIa, ER/PR positive and started Herceptin with Taxol once every 3 weeks. Started to get hives and itching on the second day after receiving T + H. Thought this was due to the Taxol. Then got an anaphylactic reaction (hives, tightness in throat and chest) 10 minutes after the Herceptin was started (1 hour drip). I was pre-medicated with Dexamethasone and Benadryl but still got the reaction. I was given more Dex and Benadry and the herceptin infusion was restarted. 15 minutes into it, I got the same reaction again. They stopped the herceptin and never re-started. I have not been given any herceptin since. and have completed Taxol on Sept. 8th. However, I continue to get allergic reactions. Not sure if it is due to the Taxol, Neulasta or residual herceptin or a combination of any or all. Spent several hours at Emergency due to an allergic reaction today. Going for allergy testing on Oct. 4th.

I spoke to Roche, distributor for herceptin in Canada, and they asked a number of questions about my reaction. My onc is trying to get information on others who have experienced an anaphylactic or other severe allergic reaction while taking herceptin. Roche was intially reluctant to release the data. The Roche rep did tell me that at least one patient has died from the reaction to herceptin, but a severe reaction is rare.

I am hoping to be able to safely get back on the herceptin. Thanks for posting this thread.

Carina