Heart Medicine Alternatives

Eve.  I hope all went well with your surgery.  

 You have posted several times that your lower number was 130 and that is quite high....usually I think they consider 80 normal for the lower, diastolic . Systolic is the upper reading.  If I am not mistaken when the lower one is high that is actually worse than the top one being elevated.    My EF was between 45-50.....this is after being on weekly low dose Adriamycin since Dec.7,  My onco said they should hold my treatment when he saw that was the result of the echo we had just done until I consulted with a cardiologist.  The cardiologist said she did some figuring with percentages and she felt it was closer to 50 than 45, however it had gone down.  In Dec. it was 70....then a few months later it had gone down to 60 and then this last echo was the 45-50 one.  This cardiologist knows my history and knows that the adriamycin is one of the lst chemos to work for me at all in the past two years.   When I started on it my tumor markers were 7,668 and this month when we ran the  CA 27.29 they were down to 325.   So it is sort of a catch 22.....do I want heart problems or cancer to get me?  Her suggestion was that we continue with the adriamycin for another month, repeat the echo and if it has gone to 45 or below, we stop the chemo and look for another treatment.   She started me on carvedilol (generic for coreg), twice a day and lisinopril once a day,( noted that these are the same ones you were prescribed) telling me that they could cause my already low blood pressure to drop, but that she was prescribing them in hopes that they would actually help my heart by causing it to pump more effeciently and not put as much stress on the muscle. Both were the lowest dose they come in.  Well, it dropped the BP for sure. One evening it was 69/49.....oddly enough I did not feel dizzy at all, but I will say I was feeling pretty weird at work one day...felt like chills were coming out of the top of my head, my skin felt like it was crawling and I was sort of just not really with it, not disoriented, but not thinking with a clear head. That was my lst day on it and we took my BP at work and it was something like 89/58. Normal for me is about 106/ 70.....never has been high, but never was a low as 69/49. Someone said if yours was 40 you would be on the floor and I also question if that was really your blood pressure or some other reading. My pulse is usually around 70 and I do not think it went all that low when I was doing those meds. Anyway, to make a long story short when I reported this to the cardiologist's nurse she told me to stop taking the meds and let her know if the strange feelings I was having went away.....they did, but I got that lowest reading two days after going off the meds.  I called them back on Mon, said I was feeling fine so they had me start taking the coreg at night only since she said it does make you feel tired. Did that for three days and tolerated it well and called and told the nurse that so then she said to do it twice a day and I have been with no ill effects. BP this evening was 106/68.....normal. I will call later this week and maybe they will have me add the lisinopril to the mix. I think part of the problem was taking two new meds BAM without easing into them.

I got an automatic BP monitor at Krogers.....only $19.99. It's a good one, tells your pulse also and has a memory so you can check the previous reading. The nurse told me to take it twice a day after being at rest for 15 mins and she said by that I do not mean sitting for 15 mins and then getting up to get the cuff.....after 15 continuos mins of being inactive take it and have the cuff right there. So that has been exprecience with the EF, new meds for it and my drop in BP.

My problem as I said was caused by the Adriamycin. I asked the cardiologist if it would go back up once I go off it and she said she has seen it often improve when people go off herceptin, but not with adriamycin. She also told me it can take years for the problem to show up. So that's all I know. I am glad I am able to at least get another month of adriamycin in since I have not been having bad SEs....my hair started growing back in about two months ago which surprised both me and my onco. My nails are pretty funky and I lost my toenails, but for the most part it's not a bad drug at all....no nausea or fatigue. Can't say I am happy about my EF, but we knew this was a possible dangerous SE and I was willing to take it because we had to do something that would get my liver tumors under control.

Didn't mean to butt into this thread, but when I saw the topic it jumped out at me.  Again, hope your surgery was a success and that your EF goes up either from being off the herceptin or with the help of meds.  While you are at the hospital, I am sure they will be taking your BP so you will get accurate reading there.

Eve,  I am on the heart meds now, but don't know if I will stay on them or not.....am always talking to the nurse who is supposely conferring with the doctor, but know the doc is on vacation this week.   Yesterday I called in and said all was fine taking the coreg twice a day, one AM, one PM, and she said just to continue with it and not to add Lisinopril until she talked with a doctor.  BP in morning had been 101/62 with pulse 73.  Well, last night it was 75/48, pulse 78.   That is too low IMHO. I had no dizziness with it, but wasn't doing anything to make me dizzy, was just reading and watching tv.    This morning it is 85/49, pulse 75.    I have a little booklet I record this in and am to take it to my next appt with me.   All I know is I feel really tired, but part of this could be the fact I came off my steroids that I get with the premeds for chemo.  I am going to call today to see if I should go back to once a day.  I know with most people these meds work fine, but am sure the fact I had BP that ran on the lower side anyway, complicates things.

I have not had any edema problems for a week now and am drinking lots of fluids since they told me to both to keep the electrolytes flowing and also because I am taking Cipro for a UTI.   Seems like all of a sudden I have mutiple things going on. Got a urinary tract infection, the antibiotics for that caused me get a yeast infection and for some reason I have a terrible sore throat today.

I am glad your surgery went well.  I do think your EF will go back up after you are off herceptin.....say this because the cardiologist told me she has seen it to back and also because of one of my friends in the chemo room who still does herceptin, but the adjusted her dose and hers went back up to normal range.

Stage lV has not been so bad for me in that I have been able to continue with my normal activities the entire time, but it gets complicated.  The Adriamycin has really been doing a wonderful job ( I think just going on the tumor markers, but we will find out for sure with the CAT today) and I hate to think of looking for something new.

Have to go eat something now as I have to just stick with clear liquids starting in 30 mins.

Have a good day.    Marybe

So what happened to this topic?....noted the original post was gone.    I am still have issues with the heart meds or I guess I should say the heart.   I am actually tolerating the coreg now and they have doubled the dose since my EF went down again and now it is between 35-40.   Unfortunately, mine will not return to normal even though I am no longer going to be getting Adriamycin....know it does on Herceptin, but they tell me the damage with A is not reversible, but can be helped with drugs.  I saw a heart failure nurse PA on Friday and was sent for a chest  xray and have to have two different blood tests done next week.   They are telling me the heart is enlarged and I know I have fluid around it and in my lungs because breathing is an effort, can't do steps or walk very far without having to stop and gasp for air.   Then there is this really obnoxious cough that goes with this...sounds like I have the croup.   I am taking coreg and some new water pill since she did not think lasix was the best one, but at least with lasix I was getting rid of the water...if I am with this new one, I don't know where it is going since I am not really peeing much at all.  So I am sort of in a state of limbo and sure do hope something helps soon.  I have an appt with a physician in this same heart group who deals strictly with heart failure, but could not get an appt for two weeks.  My pulse had been running in the 110s for over a week....highest was 116 and BP cuff at home showed an irregular heart beat, but I went for an EKG and heart beat was normal so that is good.  For the past few days pulse has been in the 90's and BP is low, but not alarmingly so.

How is anyone else doing with heart meds?  Are things inproving?   One thing for sure I will not try the cayenne pepper....I cannot eat anything that is seasoned, just tears my mouth up....other people will say how good something is and I take a bite and go Wow, too hot for me.  Fruit makes me gets sores in the corners of my mouth and I am just finding it difficult to find things to eat in general....they tell me this is from the chemo, but I am off it so don't really get this. 

The op changed her user name and deleted many of her posts. Not sure why but it's quite easy to backtrack and figure out previous user name ( in replies to posts, if you are addressed by your prior user name, thst does not change). Hope everyone is well and thoughts and prayers for Marybe to be released from the hospital soon.

Caryn

Joy,

I was just responding to Marybe's post. Sadly she will probably never read it. It is probably not necessary to rehash the unfortunate incident you are referring to. Let's pray that Marybe finds peace at this point in her journey.

Caryn

Joy,

Marybe is very close to the end of her journey and unlikely to read this. She is not seeking any further tx and is entering hospice care. Let's respect that please. The other issue truly needs no resurrection.

Caryn

The other issue was already beaten to death and created too much discord.Eve has deleted her post and has chosen to leave bco, so this is not her thread since there is no op. Let it go. Prayers and thoughts to marybe.

Caryn

Joy, very well said:

"I also know Marybe was able to have a long and relatively good QOL with the help of her treatments and am thankful for her extended life as she's clearly brought so much love and support to so many."