Herceptin Heart Attack

TonLee · January 2012

I am not positive, but I think I remember reading Herceptin increased our chance of cancer free survival by 30%...I'm not looking at the data, that's just off the top of my head so it may not be right...but I'm almost positive it's not a lower number.

ArleneA · January 2012

Why is my ONC telling me there were no studies on the length of time needed for Herceptin but they jusst made up the year timeframe? I'm going to ask another onc and see what story I get!

Happy New Year ladies!

Arlene

serenitywisdom · January 2012

This is what Wikipedia had to say about length of treatment and herceptin. If anyone has any newer information, please share: also info on heart disease damage and herceptin

The optimal duration of adjuvant trastuzumab is currently unknown. One year of treatment is generally accepted as the ideal length of therapy based on current clinical trial evidence that demonstrated the superiority of one year treatment over none.^[19][20] However, a small Finnish trial also showed similar improvement with nine weeks' of treatment over no therapy.^[26] Due to the lack of direct head-to-head comparison in clinical trials, it is unknown whether a shorter duration of treatment may be just as effective (with less side effects) than the current accepted practice of treatment for one year. Debate about treatment duration has become a relevant issue for many public health policy makers due to the high financial costs involved in the administration of this treatment for one year. Some countries with a taxpayer funded public health system, such as New Zealand, have opted to only fund for nine weeks of adjuvant therapy as a result.^[27] Current clinical trials are in progress hoping to answer this question by directly comparing short versus long duration of therapy.^{[citation needed}

One of the significant complications of trastuzumab is its effect on the heart. Trastuzumab is associated with cardiac dysfunction in 2-7% of cases.^[28] As a result, regular cardiac screening with either a MUGA scan or echocardiography is commonly undertaken during the trastuzumab treatment period.

Approximately 10% of patients are unable to tolerate this drug because of pre-existing heart problems; physicians are balancing the risk of recurrent cancer against the higher risk of death due to cardiac disease in this population. The risk of cardiomyopathy is increased when trastuzumab is combined with anthracycline chemotherapy (which itself is associated with cardiac toxicity).

Cowgirl13 · January 2012

Before Herceptin, triple positive was a whole different story.

Kay_G · January 2012

I did have adriamycin as well as Herceptin. Did anyone with the drop in ejection fraction not have adriamycin?

I am a little concerned. I am noticing palpitations some. I hadn't before. I told the cardiologist last week and she thought I may be just hyper aware now. Told me everyone gets changes in their heart rates at times, could be caffeine. But it seems to be getting more frequent to me. And I felt light headed and dizzy yesterday, but might have been slightly dehydrated. Has anyone else felt that they were getting palpitations more frequently?

ArleneA · January 2012

Kay: I had THC. Met the the oncologist (the first one I started with her in Melbourne) and asked about the time for Herceptin and if the year was just a made up timeframe with no studies. She said ABSOLUTELY NOT that there were studies done to come up with the year. Yes more studies are now being done to see if 6 months works the same. She really wants me to get the full year of Herceptin in. So I'll have another MUGA next month and am scheduled for Herceptin again on the 6th of February....well we will see what the Cardiologist says too.

serenitywisdom · January 2012

I had TCH ( 6 infusions) and so far 7 months total of herceptin. I have read that there is a greater chance of problems if one did combo therapy but the bigger risk is adriamycin combined with herceptin. I am having another herceptin only infusion tomorrow after a 2 month break and also seeing cardiologist. It think it is hard to know sometimes if feelings in chest is due to anxiety vs. real issues. Sometimes I feel like achiness in the general area but no papitations. Women experience chest pain differently from men, they say. Que sera , sera. d

Kay_G · January 2012

Good luck with your infusion tomorrow. I am scheduled again on the 12th. Good point about the anxiety vs. palpitations. I thought I was having palpitations yesterday, but my husband felt my pulse and said it was slow and steady, so I guess it was anxiety. Are you getting any blood tests first? I am going to get protonin and probNP (might have the name a bit wrong) checked before they start the infusion. Also, do you get a larger infusion after skipping? When I got the last infusion it had been six weeks since the previous one, so I ad a loading dose, 8 ml per kg instead of the normal 6 ml per kg. they said they always do this due to the half life of herceptin even if you're even a week late.

ArleneA · January 2012

Kay: Interesting about doing the loading dose again. I need to ask about that! Funny, not really, when I get big palps and take a half xanax (half of .25), the palps go away. Think, we think too much!!!

Night all!

achpurple · January 2012

When I switched from TCH to AC therefore having a break between my Herceptin infusions because I had to finish all AC then take a break before Herceptin started back up, they said I had to have a "loading" dose again.

TonLee · January 2012

Good luck Serenity,

Let us know how your infusion goes.

I don't get anxiety pain. And the pain I feel from the heart isn't even on the heart...it is up under my left rib cage (which is why my onc poo pooed it for so long and said it was a stomach issue). Right next to, or probably right near the bottom of the heart.

I keep telling myself my heart is improving....but the fluid retention in my legs is not getting better....grrrrr.

serenitywisdom · January 2012

Hi everyone,

Thanks everyone for the kind words and thoughts. Had the herceptin infusion this afternoon after almost a 2 and half month break. They gave it to me slower just in case I had a reaction because it had been awhile - took an hour instead of usual half hour. Had no apparent problems. They did not mention a change in loading dose so I will ask my onc about this. I spoke with the pharmacist if it would make a difference in terms of less heart issues if I got herceptin weekly and less of a dose than a bigger dose every 3 weeks. She said she did not think that would matter. Luckily the port worked cause it had not been flushed since Nov. . A port apparently needs flushing every month to keep it from clotting up. I was lucky. They did not tell me to go in and have it flushed.

After the infusion today I went to see the cardiologist. He said the ace inhibitor and beta blocker I am taking should help protect the heart. He said I could wait on the angiogram. They are planning to do another MUGA after another herceptin infusion in 3 weeks. I asked him with the MUGA if EF improves than do we know if taking a break from herceptin might have helped or if the cardiac meds would impact the EF. He said as long as the EF improves and doesn't get worse-that is the important thing.

He also said it was safer for me to exercise now that I am taking ace inhibitors and beta blocker. I am still gaining weight- feel very sad about this-have gained 35 pounds since Feb 2011 when I first got the mastectomy and then thyroidectomy and then chemo . I am going to weigh and measure ALL of my food very carefully from now on. The weight gain might be due to the herceptin, steroids when I was on chemo, and thyroidectomy and now maybe the cardiac meds are also making me gain or making it difficult to lose.

TonLe- interesting you mentioned the location of your chest achiness. I have also felt it in the same place as you. lower near ribcage. They said my apex appeared to have had small heart attack but they could not be certain-it might be just artifact from tests. This is definitely an art not a science-interpretation of all the tests.

I am just glad it is over for now

Omaz · January 2012

serenity - My good friend has thyroid troubles and it took a long time and effort to get things sorted out. Do you have a good endocrinologist? I think the thyroid issues can impact weight gain/loss. Glad your infusion went fine. I am also watching what I eat. I have been using the fitday software that TonLee recommended to keep track of calories and nutrients and I bought extra measuring cups/spoons and a nice digital scale at Target.

Kay_G · January 2012

Glad the port and herceptin worked out! I didn't know about getting the port flushed every month, it had been six weeks without accessing it for me. I am due again next Thursday, will see how it goes. Yesterday was the first time i got out of breath on my walk. I'll see if it happens again today or not. Que sera sera......

TonLee, hope the fluid starts going down.

TonLee · January 2012

Glad there were no problems at infusion Serenity. That's a bonus!

I am hypothyroid, and since being on Tamoxifen it has really gotten out of wack. My endo is checking it every 3 months.

Listen. Thyroid problems will make you fat. I don't care what anyone says. I know this for a fact. I am athletic, have a rigorous workout routine....several years ago when my thyroid died, all the sudden I started gaining weight.

I know not to drop below 1200 calories a day because that all but stops the metabolism. So I dropped to 1200, upped my workout time, and went after those extra three pounds with death in mind. Except the next week I was up 10 pounds!! Losing hair, tired, you know the drill.

After about 25 pounds I went to the DR who said I was just depressed (lived in Alaska at the time and it was winter (dark)..so he told me to use a sun lamp.

Ten pounds later...(total of 35 and I didn't get that heavy with EITHER of my kids)...the whole Buddah belly, I went back....it took going back for 2 years before they FINALLY decided to check my thyroid.

All that to say this. Don't sweat the weight so much. Once your thyroid gets worked out, you'll start losing it. You really CAN'T help weight gain when your thyroid is jacked up. I fought it, tooth and nail for a couple years untreated and it was the most discouraging thing I ever lived through. Breast Cancer was EASY compared to that angst. And Hypo fatigue was 1000 times worse than chemo fatigue for me......

Good luck to you. And if you want to start keeping track of calories for free, try fitday.com.

I love that site and use it every single day.

I also think a digital kitchen scale is essential.

If you are under 5'5"...you can generally cut your caloric intake to 1500 a day, with an hour exercise 6 days a week (whatever you can do)..and that will drop you a pound, maybe two (Depends on how active you are, muscle mass, etc) a week.

If your thyroid isn't right, you won't lose even with that...BUT, do it anyway, because once the thyroid is good...it's like your body exhales fluid and fat. lol

I have some VERY filling low calorie meals if you are interested.

Kay_G · January 2012

TonLee, I'd be interested in your low calorie meals. I like the weight I am at, but don't want to gain. I am going to check out fit.com too.

TonLee · January 2012

Ok Kay...I'll post a few later today...on my way out...

it is fitday.com

let me know how ya like it!

anonymice · January 2012

Kay, I'm having heartbeat "skips" and such too, but I did pretty much know it was at least partially anxiety, because my chest felt tight right after they told me. I don't want to take any drugs right now - after being off Herceptin for a few weeks my body aches are just gone and it's sooooo so nice not to take any narcotics, they make me a cranky tired mess - I try not to but sometimes I do have to take an ativan. And then the symptoms disappear.

Omaz · January 2012

I ended up buying the fitday software and downloading it onto my PC for 19.95 I think. It's great. The website is free.

TonLee · January 2012

Here is one of my favorite meals. I eat it about 4 times a week! The picture and recipe that follows is approx. 480 calories. If you want to stay under 400, just omit the Doritos. What you may not be able to see here is this is a large serving bowl, not a soup or salad bowl. It's big and if you can eat all this, you won't be hungry for many hours!

Also, I don't believe in cutting things out of my diet if I enjoy them. I use fitday.com to monitor my calories, and when I want something sweet, or doritos in my salad, I budget for them.

Just a few quick notes on some ingredients:

ICEBERG LETTUCE....I like the crunchy texture of iceberg lettuce but know it is nutritionally a 0. So I use 1 cup of cut up iceberg lettuce to 2 cups of baby spinach. That way I get the nutrients from the baby spinach, but the crunch and texture of the iceberg.

CHEESE? I don't use cheese in this. I just don't think cheese is worth the calories. You could substitute the avocado for low fat cheese tho if you're a big fan.

DORITOS? REALLY? I do use Doritos for two reasons. One, they crunch great. Two, they give me the cheese flavor. Since I only use 1/2 an ounce and then crush them up, I get some of that Dorito goodness in almost every bite. If you don't like Doritos, you can leave it out, or use plain tortilla strips...just keep the calories at around 80-85 for that topping and you stay in the 480 calorie range.

DRESSING ...I make my own salad dressing from the "Spicy Ranch" packs using fat free mayo, 1 TBSP f/f Kraft Simply Sour Cream, and 1 cup almond milk (you can use skim milk, but I like the sweet flavor of almond). I use 2 TBS but put a touch of water in it to make it "runnier" so I can drizzle it before tossing.

BEANS are beans right? Well not exactly. For some reason Goya beans are 90 calories per 1/2 cup while most of the others I've seen are 110. I guess in the big scheme of things 20 calories doesn't matter...but I like to eat all my calories..so 20 is 4 pieces of sugarless gum! hahah..

BOCK BOCK...chicken....two options here. You can purchase chicken breast fillets from the frozen food section. (I like tyson's in the green bag.) Or (this is cheaper and better tasting imo) you can make your own blackened chicken. The blackened chicken recipe will follow this post. I also usually use 4 ounces, but I was hungry today so used 4.5..thats the size in the pic.

This is what I do, and did for this recipe/picture. I will make up an entire pack of chicken breasts at once, and store them in the fridge for the week. Then when I need them, BAM, there they are! On top of pasta, salads, or just alone... They also freeze really well, just be sure to double wrap them to avoid freezer burn. (ick!)

In this specific recipe I will share approx calorie and fat...

Southwest Chicken Salad (Roughly 480 calories/18.6 fat/36.8 protein)

1 cup shredded Iceberg Lettuce (7/.1/.5)

2 cups baby leaf spinach (14/.2/1.7)

1/4th a medium avocado (69/7/1)

Red Pepper (2 ounces) (15/.2/.6)

Sweet Onion 1.5 ounce..about two solid slices of med onion (15/0/.4)

1/2 cup Black Beans Goya (90/.5/7)

Blackened Chicken (or frozen chicken fillet) 4.5 ounces (158/6.3/23.9)

Spicy Ranch l/f or f/f dressing 2 TBS (33/1/1)

Optional

1/2 ounce Doritos

Prepare chicken.

Cut everything into bite size pieces.

Drain and wash beans (heat if desired) toss on

Drizzle on salad dressing and toss....

Sprinkle on Doritos.

DONE!

Enjoy!

TonLee · January 2012

Easy Blackened Chicken (the trick is to use an iron skillet, but any will do)

1 teaspoon paprika

1/4 teaspoon salt

1/2 teaspoon cayenne pepper

1/2 teaspoon ground cumin

1/2 teaspoon dried thyme

1/4 teaspoon ground white pepper

1/4 teaspoon onion powder

4 skinless, boneless chicken breast ( I usually pound these out to be the same thickness so they cook evenly in the oven, ie, one is done and the other raw)

Preheat oven to 350 degrees F (175 degrees C). Lightly grease a baking sheet. Heat a cast iron skillet over high heat for 5 minutes until it is smoking hot. (Turn on the fan above your stove, this gets a little smokey!)

Mix together the paprika, salt, cayenne, cumin, thyme, white pepper, and onion powder. Oil the chicken breasts with cooking spray on both sides, then coat the chicken breasts evenly with the spice mixture.

Place the chicken in the hot pan, and cook for 1 minute (with fan on!!). Turn, and cook 1 minute on other side. Place the breasts on the prepared baking sheet.

Bake in the preheated oven until no longer pink in the center and the juices run clear, about 5 minutes. Remove and let sit 5 minutes before slicing.

Store leftovers sealed in frig up to a week.

ArleneA · January 2012

Great recipes TonLee. I'll be trying most of these, for sure. Thanks!

ILBoysMom · January 2012

Looks yummy!

I got official word today from the Onc nurse practitioner that after the last echo and stress echo, I am officially off Herceptin for good. My numbers just won't go over 45. I don't really know what that means after only 6 months, but my heart just can't take it. I am really scared. I meet with my Onc on Tuesday to discuss what this means long term. I felt better being on Herceptin because I at least felt like something was being done to make sure this madness doesn't come back. I know that's what the Tamoxifen is for too. But, I just hate having a tool taken out of my toolbox, you know? I asked if there was an altenative and the nurse said Lapatnib, but it is not FDA approved as a Herceptin alternative.

TonLee · January 2012

ILBoysMom,

You've been on Herceptinf for how long? Did you pass the 6 month point?

Kay_G · January 2012

Thanks TonLee! That sounds good. I will try it for sure.

ILBoysMom, several of us on the thread are in the same boat. My EF was at 45, then 47 and they restarted herceptin. I am on a beta blocker and ace inhibitor. It's a low dose, but with low blood pressure, I can't take any more. The cardiologist also told me to take 4 fish oil pills. I am afraid my heart may be getting worse. I am getting tired and winded on my walks, and that didn't happen before. I'm supposed to get herceptin on the 12th, but they will check my blood first, so we'll see. I have had 10 herceptins. I am scared too, but I need my heart if I beat cancer. My personal opinion is six months is a good amount. There is a trial testing whether six months is as effective as a year or not. We will all be interested in those findings I am sure. You will get some good info here. Hang out with us. We're all in it together.

ILBoysMom · January 2012

I figure 6 months of Herceptin has to be better than no Herceptin, at least that's what I am telling myself. If I learn any new words of wisdom or encouragement from my Onc on Tuesday I will be sure to share. My Onc just flat out won't treat with Herceptin under 50, period. In a way, I guess I feel better about that. I don't want to be cancer free and then have other troubles. I am on an ace inhibitor (Ramipril) and a beta blocker (Coreg). For being only 39 years old, that's enough heart issue for me. I will keep you posted on what I learn.

Kay_G · January 2012

I think 50 is the magic number for a lot of oncs. Mine was 47, and I got another tx. Hopefully it did not do any more damage. My onc had a baby at the end of November and is out, so I am going with the advice of the cardiologist and my onc's NP. They both are certain that the onc would want me to resume the herceptin. Sorry this is happening to you so young. I will be 49 tomorrow and think I am way too young for all this heart trouble. I am taking coreg too, but the ace inhibitor I am on is enalapril. Did they tell you to take fish oil too? Comforting to see we are getting recommended similar txs.

TonLee · January 2012

I do believe the studies will show 6 months are as good as 12, and not because I had 9 months...but because I think there was already clinical evidence of this which is what helped push the trials along.

There are a large number of women RIGHT NOW (in the trials) who have been prescribed only 6 months.

I doubt they worry about it.

I'm not going to..

ArleneA · January 2012

Good post TonLee...makes make feel good since I made it through #10. I see the cardiologist Monday - anything you ladies can add that I should ask him? I'm betting he doesn't have a clue about Herceptin.

Thanks, Arlene

MemaSue56 · January 2012

Hi ladies...I haven't posted much on this site but have been reading avidly. I just went and counted how many Herceptin drips I have had since my dx. 22....I can't belive it. I've had 22 and due for another on Tues. Plus, been told 12 months also...so, no BMX til late June and I have to have 30 days free of Herceptin b4 surgery. My chemo cocktail was Carboplatin/Taxotere (sp) every 3 weeks with Herceptin, cept I had to have Herceptin EVERY WEEK from MAY 23 thru SEPT 27. Then I went to every 3 weeks of Herceptin. So I was getting at least Herceptin EVERY WEEK! I am 57 yoa and have had some very bad vices. My heart went nutz near the end of July....palps a-crazy. Was afraid to go to sleep...n I have very low blood pressure normally. I waz freakin out...onco didn't seem concerned...more I took my BP, worse it seemed to get...I was, apparently, my own worst enemyj. Then my mid-treatment MUGA was done on Aug 23, my LF output went down 20 points....Onco told me I had to see Cardiologist post haste. Now I knew I was doomed...but no. He did Cardiac-echo and EKG.....my heart fine. Just lost my mom in April to heart attack...but she was 80 and smoked almost 3 packs a day...so, not like it's hereditary, where with some of you it is.

Onco AND Cardio guy said it will reverse, UNLESS, you already have heart condition. I had history of SERIOUS MitroValveProlapse. Cardio guy said, not same thing and nothing to worry about with the Herceptin.

I am still kinda freaky about all this...but, and I only hope this helps some of you. I HAVE NOT, had the palpatations, or any other heart related SE's, since my visit to the CARDIO guy. I have not taken any drugs outside of what I do for the BC and pain from my mets. My last MUGA was normal. So, being TRIPLE POSITIVE AND STAGE IV WITH METS....oh and OLD...LOL....I can't speak for those who have seen a cardio and been diagnosed w/damage...all I can speak for are those who are starting or are shortly into it.....and I say this WITH CAUTION, as everyone is different, as a Triple Positive Herceptin is a GOOD defense (maybe not the only one) and not everyone will succomb(sp) to irreverasible heart damage....I'm living proof of that, as my last scans again showed NO EVIDENCE OF DISEASE.

I hope like hell that I did not offend anyone, I only want to calm some nerves...if that's possible with this RA!Bast@rd BC.

You are all in my prayers ALWAYS!!!!

Herceptin Heart Attack

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