Herceptin Heart Attack

ArleneA

Thanks Ton Lee.  I'm so ready for the port to be gone especially since I'm finished with Herceptin.

I'm so waiting for the results to come out on the 6-12 months of Herceptin.

kdking

I agree w TonLee...I don't think that will hurt the port.



Also...I noticed a few of us are around the same age...I'm 37. Why is Herceptin so hard on us...? You would think our age would help us out some.

serenitywisdom

Hi everyone,

I am getting a repreat MUGA next week, then they are going to decide on much more herceptin.    I have had about 10 months of  total  Herceptin treatment albeit it was stopped for about 2.5 months and then restarted .  I understand there are trials that are comparing 3 months of herceptin with one year and 2 years of herceptin.  Bottom line:  they don't really know what the optimum time of taking herceptin is.  So I figure if my heart is still getting compromised I can just get 10months of herceptin  and that should be enough.  I am getting the tissue expander out finally and silicon implant  in April3 and probably will get port out too. The tissue expander has been in for 14 months and I am pretty tired of it.  Surgery got delayed due to heart problems from the herceptin.  Now that my heart is hopefully doing better on beta blocker and ace inhibitor they can do the reconstruction  surgery.  Good luck everyone

ArleneA

KDKing:  I'm one of the old ones here at 62 and a runner....so I sure was surprised when I had problems from the Herceptin. 

Hi Serenity:  We just have to hope the treatments we had (me 10) were enough.

Arlene

jackboo09

Hi Tonlee

I have just got back from the clinic where I was due to have tx 16. (I had miscounted, thinking I had 2 to go, but no another 3)

I explained the heart palp issues I have had over last couple of weeks. So Im postponing tx till fri 30th and having an echo and 24hr ECG monitor fitting. If all is well I will have the remaining treatments which takes me to June 1st. This date seems like an eternity away.

I feel Im being ultra cautious but that Im doing the right thing. So tonight I can relax, await the tests and hopefully go into the next tx feeling reassured. Thank you for your comments. My gut feeling is that 6 months will be enough too. Im so, so tempted to call it a day but I figure ive come this far.

Best wishes and will post again soon.

Liz

serenitywisdom

I am ready to call it a day too.  When they take the tissue expander out, it would be nice to take the port out too.  The port sticks out and I do wonder about the risk of infection if it ever got scratched.  My dog sometimes jumps up on me for example.  I feel like coping with one drug at a time is enough.  Now on Arimidex too.  Did most of you take arimidex or tamoxifen at the same time as herceptin?  My doctor just started me on Arimidex but others I have heard start taking arimidex almost immediately after the initial chemo therapy completed and while still on herceptin. 

TonLee

Liz,

Keep us posted!

Serenity,

I started Tamoxifen about a month after final hard chemo, so yes I was on it during Herceptin and radiation.  My gut told me all along my cancer was primarily an estrogen issue...had hormonal issues including thyroid problems all my life...so of all the tx, the Tamox was in my mind the most necessary.

Are you have SEs from the Arimidex?  If so, what?  I haven't even looked at AIs yet, but due to start some soon.

Kay_G

I was 47 at diagnosis, with no heart issues or BP problems. Cardiologist was surprised I was effected by the herceptin. I've read that people who have to take the beta blockers or ace inhibitors with low blood pressure are more likely to experience side effects from them than others. Not only fromthelowblood pressure,but other things as well. Yikes.

kdking

Starting radiation tomorrow!! At least this will keep my mind off not being able to have Herceptin right now. I've only had 10 weeks of it.

Jackboo..I am also getting hooked up this week! I will have a Holden monitor on for 24 hrs starting Wednesday morning. I am still getting the racy heart every once in a while.



Hope everyone has a great week! Softball practice starts Tuesday for my youngest! I will be the asst. coach again this year. I love it!

jackboo09

Hi to everyone

Update: another episode of heart palps and difficulty breathing on Sunday night so spent 5 hours in ER. ECG and BP all fine as they always are. They didnt run bloods as I think they could see I'd had enough. Totally shattered today. Tomorrow I have an echo which I'm hoping will shed light on what's going on. Based on the echo and 24hr monitor I will either have nxt tx or suspend.

Last night a nurse suggested taking Ramipril at night so i am going to give it a try. Think the Ramipril could be to blame but not 100% sure. Last month or so, had these heart episodes and generally felt more fatigue. Fed up. I can't enjoy (the end is in sight feeling) because I feel so crap. Other symptoms: tickly cough, mild diarrhea and chest heaviness, along with a pounding heart. Advice or comments most welcome. Will post again after echo.

Liz

kdking

Liz, I know how you feel! Hang in there girl!

jackboo09

Hi Kerrie

So have you got similar symptoms and are you on BP medication. Thanks for the encouragement. This board is so fantastic.

Liz

kdking

Liz...I have all the symptoms you have...but not on any bp meds. My blood pressure has been ok...just get the racing heart a lot. My echo said that my EF was only 50...it was 63 in January. Doing another echo on April 19. My Herceptin has been put on hold until then..I have only had 10 weeks of it..along with my taxol.

jackboo09

Hi Kerrie

Sorry to hear your troubles. I too had an EF drop when I had my first muga (after 4 months of chemo/herceptin) In my case it dropped to 47, but it had only been 53 before tx began so my onco pushed ahead and I continued (with the BP meds).

There has to be something causing this. I will update tomorrow after my echo and will await your key date of April 19th. Fingers crossed for you! I have managed 15 treatments, every 3 weeks so if I have to stop, so be it. Best wishes and many thanks for responding.

Liz

ArleneA

Sorry to hear about everyone's problems with the EF.  My heart palps began right after my first chemo and herceptin.  After I finished chemo, the slowed down but by then they had me on mega does of bp medicines.  I was recently changed to the Coreg and I don't think it works as well for me as the Metoprolol....I'm having minor palps again which I didn't have on the Metoprolol.  My last Echo 2 weeks ago, showed my EF moving up and now at 55 which his nurse says is normal, so I asked, normal for whom.....probably not so normal for us Herceptin ladies  - well, I'm done with Herceptin anyhow and once again hoping that the 10 treatments was enough.

Arimidex:  I started it after finishing chemo and radiation.

SE's to Armidex for me are achy joints and stiff muscles and general yucky feeling.

Arlene

serenitywisdom

Hi,

Well the rollercoaster with Herceptin and heart being impacted continues.  The good news is that I have completed almost a year of all of the hercpetin  infusions even though I have had it stopped before.  They stopped the infusions after MUGA  EF went down 19%.  Then they put me on heart meds,  ace inhibitor and beta blocker which are suppose to be cardio protective.  I got 2 more inufusions and then a MUGA  and my EF went down again.  So my onc cancelled the herceptin infusion for tomorrow.  I am supposed to have tissue expander surgery this coming Tuesday.  Both my onc and I felt  why take risk of further damage to heart right be fore a surgery.  So now the plan is to get the port and Tissue expander out.  I am ready to forget herceptin and am  so done with the port.  Although I am grateful the port saved my veins and the herceptin hopefully will prevent cancer from returning.  I have had a tissue expander in since last January- very uncomfortable.  I am ready to be done with all the treatments.   I just hope my heart will get back to normal.  How long did it take others for the EF to return to normal after herceptin completed?

ArleneA

Serenity:  My last (#10) Herceptin was 11/21/11 and EF was at 50% (down from tops of 73.6) and I am now at 55+% so it is coming back quickly.  Seeing cardio on Monday to see if the meds are ok because I'm not liking the COREG.

Good luck with everything.

Arlene

jackboo09

Hi to everyone

Update: Have had tx 16 today. My echo this week was 59 and the 24 ECG was normal so I believe I may have anxiety issues which cause the palps and breathing probs. The 2 heart tests made today's infusion so much more relaxed because I had that reassurance that at the moment my heart is fine. So I plan to complete the last 2. Just need to find ways to deal with the anxiety as the symptoms I had were very unpleasant.

Liz

leftfootforward

I just got back from my cardiologist.  The results of my latest echo are back and my EF is still at 40-45%.  I haven't had Herceptin since December 1st. At this point, the cardiologist thinks that the decrease in my heart function is due to the adriomycin that I received and not due to the Herceptin. He doesn't seem to think my heart function will be coming back at this time.  I am not quite sure how he can make that diagnosis with such a short amount of time since I have been off the Herceptin.  It really doesn't change things much for me.  He is upping my ace inhibitor dosage.  He wanted to up my beta blocker as well but could not do so becuase I have such a low pulse already and my blood pressure is also low.  So I will stay on a very low dose that.  I will see him agian in 6 months.  I am still hoping that my heart function will come back with more time away from the Herceptin. Call me crazy. Trying to spin this in a good light but having a hard time right now.  Maybe tomorrow I will feel ok with it.

TonLee

Yore,

I have been off Herceptin since Septemeber 2011...today I got my MUGA results back...STILL the same, no improvement.  DANG IT!

I want my heart back!

kdking

Liz...so happy to hear your bit of good news! Hope the anxiety issue goes away.



TonLee...that sucks! I know how you feel.



Had radiation tx #4 today..faithfully putting my Aquaphor on three times a day. Wore the halter monitor for 24 hrs (Wednesday and Thursday) of course during that time my heart was perfectly calm! Seeing my onc next Thurs. to go over results.

leftfootforward

Kdking- don't be surprised if you get more tired in the upcoming days. The fatigue due to radiation kinda snuck up on me.  Aquaphor is the best and it does help.  Best wishes for the rest of your treatment.  I hope your heart settles down.

serenitywisdom

Ton Le-  I figure everyone is different in terms of recovery period, so I am hoping yours is just taking longer .  But I agree it does suck to have no change.  Do you have symptoms?  Can you tell if your heart has been impacted?

YorelH-  I am thinking your  heart function will  improve/come back and so will mine    You are not crazy

Meanwhile I just keep saying the serenity prayer   God give me the serenity  to accept the things I cannot change, the courage to change the things I can,  and the wisdom to know the difference.   

Liz- saying the prayer  helps me with anxiety.  I hate anxiety.  My onc yesterday suggested I take sleeping pill since I have had lots of anxiety lately  re heart, upcoming surgery, other severe stressors and life changes  and right now  most of all my daughter who is on a very dangerous assignment  in 2 countries   halfway around the world, and I don't even know  exactly where she is.  She cannot tell me.  I am going to try melatonin first and then take sleeping pill if the melatonin doesn't work.  

Everyone take care.  I did healing touch yesterday and it was great -felt renewed and much better after.

Omaz

kdking - Emu oil from amazon (progressive) was terrific during rads.  I also gooped on aloe vera gel right after treatment.  Make sure you don't have any skin on skin contact (I wore a tank top under my bra so I could wrap it around and under my breasts) and I got a larger bra.  Also, don't forget to goop your sides under your arm and up near your collar bone.  

Omaz

TonLee - Bummer!!!

kdking

Thanks to all for the good advice:)

TonLee

Serenity,

Since I am an athlete, yes I can really tell a difference.  It is akin to what I heard women talking about while on chemo, toward the end.  They move and get breathless....I do a hard hour workout everyday or at least I did, I can only manage about 30-40 minutes of balls to the wall, and then I have to bring it down a little for the other 20.  No choice.  There's just no more juice.

Also it's not pumping hard enough to fight gravity so I have fluid retention in my legs, especially my thighs.  I've never had thighs, have always been able to see the quad, hams, and calf muscles and all the definition....but not so much now.  I don't have "fat" thighs, but they aren't mine and are tight in some of my smaller jeans.

I've been taking fish oil and hawthorne, but they haven't done squat.

kdking

TonLee..I have the same problem with my thighs! Mine haven't been this big since I was pregnant. Drives me crazy! I want to be able to go on nice walks but I simply can't do it! I just get too winded. I also take crill oil (same as fish oil) and my mom just bought me some hawthorn berries but I haven't tried it yet.

jackboo09

kdking: Best of luck with the rest of rads. Sounds like your coping well. Let us know what the 24 hr monitor shows.

Serenity: Thank you for your calming words. 

yorelh: Thanks for your kind post and of course to Tonlee for starting the thread.

Liz

TonLee

KD,

The only thing that will "drain" my thighs is getting a massage.....then for a whole day my jeans are loosey goosey and I feel fine!  lol