Questions about her2 +

lago

I find as I move it gets better but I'm a little worried about my left hand. Seems to be stiffer than my right… but I am a righty. To be honest that is one of the questions I'm going to be asking in April at my appointment.

Not sure if we have more than 5 years. I know one study I read say that 5+ years is beneficial for luminal A but doesn't seem to have an effect on luminal B (triple positives). But that was just one study.

bucky317

fluff I am going to have my PS suck out my "muffin top" also, when I get my nipples done. At the time of my mastectomy/reconstruction consult, he told me "I can take care of that too" as he was pinching my middle. I was like "oh,..... ok" but didn't have it done. I was too worried about dying at that point. What point was it for me to have a nice flat middle. Now, I am like shit!!! why didn't I have it done then!!!  I have lost 15 lbs, feel great ( besides the joint aches and stiffness) and I am enjoying and living life once again!!! Lago has a way with words that makes me feel so much better living with FC. Thanks Lago!!! Ever think about being a Life Coach?

lago

Bucky I'm having a rough time landing a full-time gig. Maybe I should consider a career change. I should have been a social worker

Hindsfeet

I'm noticing a lot of meds have similiar side effects. Due to the results of bone density in lower back, my onclogist prescribed  Alendronate sodium. She said, studies have shown alendronate sodium prevents recurrences (I think). I took the first pill today.

Side effects from alendronate sodium are

Common side effects:

Constipation; diarrhea; dizziness; feeling bloated or full; flu-like symptoms at the start of treatment; gas; headache; mild back, muscle, or joint pain; mild stomach pain or upset; nausea; taste changes; vomiting.

Severe side effects:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, throat, or tongue); black, tarry, or bloody stools; chest pain; coughing or vomiting blood; difficult or painful swallowing; mouth sores; new, worsening, or persistent heartburn; red, swollen, blistered, or peeling skin; severe bone, muscle, or joint pain (especially in the hip, groin, or thigh); severe or persistent sore throat or stomach pain; swelling of the hands, legs, or joints; swelling or pain in the jaw; symptoms of low blood calcium (eg, spasms, twitches, or cramps in your muscles; numbness or tingling in your fingers, toes, or around your mouth).

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The simiiar side effects to herceptin...

tightness in the chest, joint pain, throat, stomach pain, itchness, nausea, headache and etc.

If I'm taking these sodium pills with similiar side effects, how would I know what med's caused what?

Also, on the Alendronate sodium pamplet that came with the meds said it can cause bone breakage. I'm confused, if it's meds to help with bone loss then why is one of the side effects bone breakage? I was good about taking these meds because it was cancer prevention...but now, I'm not sure.

Anonymous

Eve-lmao....nothing like a pill that helps your bone density then breaks them!

voraciousreader

Eve...Read Harvard trained physician John Abramson, MD's book, Overdosed America.  He devotes a chapter to bone density medications.  He wrote the book several years ago, weeks before the Vioxx debacle and several months before Marcia Angell's book was published.  In Chapter 13, he explains the beauty of bone cell formation. He even includes pictures.  The problem that he finds with bone density medication is that they COAT THE BONES.....Please read the excerpt from the book below....Keep in mind that I'm taking a bone density drug, Zometa, based on the Gnant study and it really makes me upset thinking about what Dr. Abramson wrote.  But remember, we're taking the medication for cancer prevention and not to protect bones from fractures:

 "In 1995, Fosamax, the brand name for alendronate, was the first of the new generation of drugs approved by the FDA for the treatment of osteoporosis. Fosamax works by attaching itself to the surface of bone, interposed between the osteoclasts and the bone the osteoclasts are trying to absorb. Randomized clinical trials of Fosamax published in medical journals show dramatic reductions in the relative risk of hip fracture for women with osteoporosis. In a study published in JAMA in 1998, for example, women with an average age of 68 and a T score of - 2.5 or less who took Fosamax for four years were 56 percent less likely to suffer a hip fracture than women in the control group.

This sounds like very good news for women with osteoporosis, but how many hip fractures were really prevented? With no drug therapy at all, women with osteoporosis had a 99.5 percent chance of making it through each year without a hip fracture -- pretty good odds. With drug therapy, their odds improved to 99.8 percent. In other words, taking the drugs decreased their risk of hip fracture from 0.5 percent per year to 0.2 percent per year. This tiny decrease in absolute risk translates into the study's reported 56 percent reduction in relative risk. The bottom line is that 81 women with osteoporosis have to take Fosamax for 4.2 years, at a cost of more than $300,000, to prevent one hip fracture. (This benefit does not include a reduction of less serious fractures, including wrist and vertebral fractures. Most vertebral fractures cause no symptoms.)

[. . . ]

What about using these drugs to prevent osteoporosis? Fosamax and Actonel were approved by the FDA to treat women with osteopenia based on studies that showed that they significantly increase the bone density of these women. It is important to remember, however, that bone density is only a surrogate end point; the real reason for taking these drugs is to reduce fractures, and hip fractures in particular. The study of Fosamax published in JAMA in 1998 (mentioned earlier) also included women with osteopenia. Did Fosamax reduce their risk of fracture? The results show that the risk of hip fractures actually went up 84 percent with Fosamax treatment.* The risk of wrist fractures increased by about 50 percent (that figure may be statistically significant -- but this can't be determined from the data as presented in the article).

How can it be that drugs approved for the prevention and treatment of osteoporosis succeed in increasing bone density but have such limited impact on reducing hip fractures? The answer can only inspire awe at Mother Nature's elegance. There are two types of bone. Eighty percent of the body's bone is made up of the hard and dense outer layer called cortical bone. In some areas of the body, bones also have an internal structure of trabecular bone, which works like an organic three-dimensional geodesic dome, providing additional strength in the areas of the skeleton most vulnerable to fracture, such as the hips, wrists, and spine.

The lacelike structure of trabecular bone creates a much greater surface area than the densely packed cortical bone and therefore allows the former to be more metabolically active when the body needs calcium. Its greater metabolic activity also makes trabecular bone more vulnerable than cortical bone to the changed balance between osteoclast and osteoblast activity. As a result, when bone mass starts to decline in women, trabecular bone is lost more quickly than is cortical bone. Once the architecture of these internal struts is lost, there is no structure left onto which calcium can be added. (See Figure 13-1.) The new bone, formed as a result of taking the osteoporosis drugs, is then formed primarily on the outer part of the bone, the cortical bone. This increases the score on the bone density test but does not necessarily contribute proportionately to fracture resistance."

Hindsfeet

Thanks ladies...

VR, I knew you would come up with something from the medical books

My oncologist prescribed me Fosamax due to signs of bone loss. She said it also helps in preventing cancer.

Unfortunately, not only the negative parts of the drug as VR so well presented, I believe I'm allergic to it. I went to the mall yesterday after taking it and walked for an hour. After an hour I had a veggie smoothing. While walking, I had a little heartburn, but nothing coming into my mouth. I stayed on my feet for a long time fearing the smoothe would come up.

I woke up in the middle of the night with fire in my throat, stomach, belly and legs. My tongue hurt as well. My head was pounding. I feared to take anything. I thought if I had something to coat my throat and stomach it would help.  I asked my husband to bring me a banana. It helped coat my throat, but still I felt fire. I do not have a fever. I could hardly get up this morning. My stomach feels like it's on fire, and my legs hurts like crazy. My back is in horrible pain. I am so weak, I can hardly walk. My mouth hurts. I feel sores  flaring up all over my mouth. There's something on my tongue as well.  I don't have signs of the flu or a cold. I feel as though a bomb exploded in me

I am going on a liquid fast today. Nothing with acid in it...wonder if cranberry juice is ok? Later today, I'm going to try benadryl and see if it helps. I'm miserable.

I'm going to look for natural ways to strengthen my bones. I'm done.

lago

evebarry have you contacted your doctor? This does sound like an allergic reaction. I wouldn't wait till tomorrow.

Hindsfeet

Monday, I am scheduled for my second herceptin infusion.  I am hoping my oncologist will ask me to reschedule until I'm better.

lago

I would let your onc may the call on weather you should cancel… but just let him/her know how awful you feel and that the thought of canceling has crossed your mind. IMO you want to get this treatment over with. It's such a time suck. Also the sooner you put it behind you the sooner it's all over… and  you don't have to think about cancer so much anymore.

Hindsfeet

Trastuzumab (INN; trade name Herceptin) is a monoclonal antibody that interferes with the HER2/neu receptor. Its main use is to treat certain breast cancers.

The HER receptors are proteins that are embedded in the cell membrane and communicate molecular signals from outside the cell to inside the cell, and turn genes on and off. The HER proteins regulate cell growth, survival, adhesion, migration, and differentiation-functions that are amplified or weakened in cancer cells. In some cancers, notably some breast cancers, HER2 is over-expressed, and causes breast cells to reproduce uncontrollably.^[1]

Antibodies are molecules from the immune system that bind selectively to different proteins. Trastuzumab is an antibody that binds selectively to the HER2 protein. When it binds to defective HER2 proteins, the HER2 protein no longer causes cells in the breast to reproduce uncontrollably. This increases the survival of people with cancer. However, cancers usually develop resistance to trastuzumab.

The original studies of trastuzumab showed that it improved overall survival in late-stage (metastatic) breast cancer from 20.3 to 25.1 months,^[1]but there is controversy over whether trastuzumab is effective in earlier stage cancer.^[2]Trastuzumab is also controversial because of its cost, as much as $100,000 per year,^[3] and while certain private insurance companies in the U.S. and government health care systems in Canada, England and elsewhere have refused to pay for trastuzumab for certain patients, some companies have since accepted trastuzumab treatment as a covered preventative treatment.^[4]

^{http://en.wikipedia.org/wiki/Trastuzumab}

^{The idea that cancer can develop a resistence to herceptin (trastuzumab) makes me wonder if taking it for a year might not be such a good idea. I wondered Could this be why some go through a year treatment of trastuzumab and after the year are dx with mets. I would hate to develop a resistence to the drug for if in a time I found that I needed it.  Maybe taking it for 4 to 6 months would be bettter.}

Hindsfeet

Trastuzumab (INN; trade name Herceptin) is a monoclonal antibody that interferes with the HER2/neu receptor. Its main use is to treat certain breast cancers.

The HER receptors are proteins that are embedded in the cell membrane and communicate molecular signals from outside the cell to inside the cell, and turn genes on and off. The HER proteins regulate cell growth, survival, adhesion, migration, and differentiation-functions that are amplified or weakened in cancer cells. In some cancers, notably some breast cancers, HER2 is over-expressed, and causes breast cells to reproduce uncontrollably.^[1]

Antibodies are molecules from the immune system that bind selectively to different proteins. Trastuzumab is an antibody that binds selectively to the HER2 protein. When it binds to defective HER2 proteins, the HER2 protein no longer causes cells in the breast to reproduce uncontrollably. This increases the survival of people with cancer. However, cancers usually develop resistance to trastuzumab.

The original studies of trastuzumab showed that it improved overall survival in late-stage (metastatic) breast cancer from 20.3 to 25.1 months,^[1]but there is controversy over whether trastuzumab is effective in earlier stage cancer.^[2]Trastuzumab is also controversial because of its cost, as much as $100,000 per year,^[3] and while certain private insurance companies in the U.S. and government health care systems in Canada, England and elsewhere have refused to pay for trastuzumab for certain patients, some companies have since accepted trastuzumab treatment as a covered preventative treatment.^[4]

It is surprising that although trastuzumab has great affinity for the receptor and the fact that such a high dose can be administered (due to its low toxicity) 70% of HER2+ patients do not respond to treatment. In fact resistance is developed rapidly by treatment, in virtually all patients. It is suggested that a mechanism of resistance is the lack of p27Kip1 translocation to the nucleus in some strains, enabling cdk2 to induce cell proliferation

For each life saved, between ten and 25 patients will develop heart disease; despite effective treatments, some of these patients will die from heart disease. For example, in the N9831 (arm C) and NSABP B31 joint analysis, approximately two patients died of excess heart disease or other complications for every three lives saved by reducing breast cancer.[6] The excess heart disease induced by the drug explains why it is necessary to treat up to 100 cancer patients to save a single life during a two-year study period.

^{http://en.wikipedia.org/wiki/Trastuzumab}

^{The idea that cancer can develop a resistence to herceptin (trastuzumab) makes me wonder if taking it for a year might not be such a good idea. I wondered Could this be why some go through a year treatment of trastuzumab and after the year are dx with mets. I would hate to develop a resistence to the drug for if in a time I found that I needed it.  Maybe taking it for 4 to 6 months would be bettter.}

Hindsfeet

 http://www.cancertreatment.pro/Herceptin-(Trastuzumab)-Side-Effects,-FDA-Warning,-News.html

Side effects: while attacking cancer cells,Herceptin also affects healthy cells, which cause adverse effects in most patients. common Herceptin side effects include:

hair loss   constipation   diarrhea   difficulty sleeping  fever  nausea and vomiting  infusion reactions

increased cough headache  fatigue  rash  low white and red blood cells  Muscle pain

If the side effects above persist for weeks, contact your oncologist. In addition, contact your doctor if you experience any of these symptoms:

anxiety    depression    nose bleeding   fast or irregular heart beat   chest pain shortness of breath   dizziness

intense head ache   wheezing    feeling of constriction of the throat    swelling of feet or lower legs    painful or difficult urination which  contain blood   Pain in lower back or in the side, accompanied by fever or chills

lago

evebarry I think the resistance is seen on women that have been on it longer. Also some HER2+ just don't respond to Herceptin. You can also develop a resistance to hormone therapy but again I do believe it's women who have been on the drug for a long time…

The reasoning be hind resistancce seems to be that cancer will continue to mutate so it can survive. This is why when one has mets they need to change drugs once it because resistant to the current treatment. If the cancer had been eradicated completely then it can't become resistant. 

They must list every SE even if only 2% of the population get it. Here is the list of SE for Ibuprofen:

• Constipation
• diarrhea
• dizziness
• gas
• headache
• heartburn
• nausea
• stomach pain or upset
-------------------
more serious SE
-------------------
• rash
• hives
• itching
• trouble breathing
• tightness in the chest
• swelling of the mouth, face, lips, or tongue
• bloody or black, tarry stools
• change in the amount of urine produced
• chest pain
• confusion
• dark urine
• depression
• fainting
• fast or irregular heartbeat
• fever, chills, or persistent sore throat
• mental or mood changes
• numbness of an arm or leg; one-sided weakness
• red, swollen, blistered, or peeling skin
• ringing in the ears
• seizures
• severe headache or dizziness
• severe or persistent stomach pain or nausea
• severe vomiting; shortness of breath
• stiff neck
• sudden or unexplained weight gain
• swelling of hands, legs, or feet
• unusual bruising or bleeding
• unusual joint or muscle pain
• unusual tiredness or weakness
• vision or speech changes
• vomit that looks like coffee ground
• yellowing of the skin or eyes

*This is not a complete list of all side effects that may occur.
source: http://www.drugs.com/sfx/ibuprofen-side-effects.html

orange1

Eve:

^{The idea that cancer can develop a resistence to herceptin (trastuzumab) makes me wonder if taking it for a year might not be such a good idea. I wondered Could this be why some go through a year treatment of trastuzumab and after the year are dx with mets. I would hate to develop a resistence to the drug for if in a time I found that I needed it.  Maybe taking it for 4 to 6 months would be bettter.}

^{Its possible - unfortunately there is no data one way or the other.}

Nana2three

It has been 1 week since my first herceptin infusion.  I had fever and chills a few hours after infusion.  Took 2 ibuprofen and they were gone within 5 hours.  The following day mild diarherra.  Runny nose and lips are very chapped for no reason.  Otherwise, I have felt fine.  Saw my oncologist today and he felt blood work looked good and I was doing fine.  I had 3 oncologists all agree on the herceptin without chemo since I have MS and there is a major concern with nerve damage.  I guess I should say more nerve damage.  I have no option but to believe herceptin alone will stop the HER2. 

Part of me wishes I had purshed for the chemo along with herception as extra insurance but my head and heart say my QOL has to be considered and the clinical trials may just prove herception works well alone and I'll be thankful I'm still mobile and functioning well with the MS and cancer free.  Onc. wants to do the next treatment in 60 minutes but I'm leery of less than 90 minutes.  I did so well on 90 and don't want to jinx the good feelings I'm having about this treatment.  I've had out of town guests for 5 days and the latter part of the week I am going to my daughter's and babysit my 3 grandchildren for 2 days.  I'm going to order the movie "Living Proof" to add to my herceptin learning experience.  This drug will be our miracle.  

Blessings,

Hindsfeet

I had my second infusion. I was given IV pre-meds of benadyrl and tylenol. I had no noticiable side effects. I also met with my oncologist. My oncologist looked at my mouth and saw I was hurting. I was comforted that she heard me. Rather than checking my heart every three months she is checking it every six weeks and if I have more heart racing and etc she is sending me to an cargioliogist.

I mentioned the concerns in my previous post due to questions I have in how long I needed to take it. It is my opinion there is still a lot we don't know about the herceptin drug. I would have not taken it based on my stage 1a, but I am based on the time between the biopsy and mx (3 months) with the possible of seeding.

dancetrancer

evebarry, so glad your oncologist heard you.  Sometimes all we need is validation of our concerns (and appropriate action as indicated) to let us trust more.  At least that is the way it works for me.  

nana, so glad to hear you are doing ok with the Herceptin.  I believe I would have followed your same path if I had MS, and especially with a smaller size tumor.  Additional nerve damage would NOT be a good thing.  I watched Living Proof the other night with hubby - break out the Kleenex!  It was good for sure, but I was dismayed that they basically said no side effects.  Herceptin certainly has MUCH less SE than chemo, but to say none?  That is misleading.   Oh well, that is Hollywood.  BTW, Harry Conick, Jr. can act!  Dr. Slamon is an amazing man and so is his wife.  The dedication that went into this drug being made is extremely inspiring.  

Nana2three

Eve - So glad your onc. is listening.  Doesn't that work miracles on the morale? 

Questions for anyone on herceptin.  I'm sure this is mentioned somewhere on here but so far I have not found it.  Is there a blood test or any type of test that gives any indication that the herceptin is working like it is supposed to.  I 'm hoping I don't have to have a recurrence of cancer or that it is elsewhere in my body and then be told the herceptin alone is not working.  I think I read somewhere there were markers in some blood test that addressed the Her2 protein.  Any info appreciated.

dancetrancer  - My ocologist agreed with me yesterday that there are some S/E.  He had told me previously that there were none.  I will say I'm not complaining since nothing yet is more than an annoyance. 

Blessings,

lago

Nan2Three I ask my onc  how they know if any of this "stuff" works at my initial appointment. She said they don't. She stated there are even some women that don't need it at my stage but the problem is they don't know which of us need it and which of us don't. My onc doesn't do tumor markers because they are unreliable (for breast cancer). Typically tumor markers are done with those who have distant mets from what I have seen.

The way I see it is if I have no symptoms I'm NED. I don't worry about recurrence until I have a symptom. I mean there are people out there with high blood pressure… they aren't constantly worrying about getting a stroke or heart attack. Just keep your weight down, exercise and eat healthy and your chances of recurrence will be lowered.

Nana2three

lago - Thank you.  I needed to hear what you said.  I tend to be impatient and want answers to everything even when answers are not possible.  I sure project the non worry to family and friends but I think under the facade I need to work on this.  I've always felt Knowledge is Power but I've never lived the walk of dealing with sine of the issues I'm faced with now.  With MS I knew there was no cure and I adapted to dealing with symptoms.  With BC symptoms can take on a new meaning. 

Thank you for putting things in a proper perspective.

dancetrancer

Yes Lago, your statement about people with high blood pressure struck a chord with me, too.  Thanks. 

Anonymous

Nana...check with your onc on the advil. Mine said no, had to be tylenol. Cant remember why now. I cant take it with tamoxifen either as there is an interaction, although he said the occassional couple is ok.

shore1

Fluff, did your MO tell you advil interacts with tamoxifen? I thought it was just advil pm or sleep aids with that ingredient in it, and benadryl that should not be taken while on tamoxifen.

dancetrancer

This cracks me up.  My MO (probably not the one who I'm going to stay with) prescribed Tamoxifen with no mention of anything I can or can't take with it.  This discussion I guess is for another thread, but what the what?  So much discrepancy between docs.   What else is new. 

shore1

Dancetracer, I specifically asked mine if there are any OTC drugs I should avoid because of tamoxifen & was told no. Then I see that benadryl and advil pm are also no good and now im wondering what else I don't know!

lago

Nana2three & dancetrancer I'm glad I could put this in perspective for you.

The odd thing is so many survivors go crazy with what to eat, not to eat, Tofu/no tufo, supplements galore, no process  etc. not knowing for sure if these things actually make a difference because it hasn't been proven. Then there are some folks with high blood pressure that are overweight and don't stress even 1/2 as much. Hell the head maintenance guy in my building had a by-pass a few years ago… he has put on even more weight and smokes like a chimney… but he is happy.

dancetrancer

Exactly shore!  Grrrrrrrrrr.....

Anonymous

Lol lago...that is so true. However if I am going to walk around with flabby belly and massive hot flashes, I at least want to do waht I can to make sure it is effective.



Shore, when I checked after having some dental work done, the pharmicist in his office looked it all up and said that I could take advil occasionally but he doesnt recommend it for more than 24 hours with tamoxifen. My onc said no benadryl unless critical and that is what is in advil pm stuff, so I guess I cant answer your question for sure.

Anonymous

You can google the interactions. I was on anti-anxiety at the time, cymbalta, and i had to switch it up as it may have one also.