Cardiologist visit after Herceptin ends

swimangel72

Hi all - I'm happy to report that my stress test today (my first one) was a success........the nurse said I performed very well on the tread mill (went up to "Stage 4" whatever that means). Originally my cardiologist said that a stress test "opens a pandora box" just by the nature of the test - but today he said everything was perfect and I'm good to go for my abdominal hernia/gall bladder surgery this Friday!

I feel relieved that I found a very good cardiologist in my insurance plan - at 54 years of age, I never once worried about my heart, but after a year of Herceptin - and a chest cat scan which showed slight "pericardial effusion" I got nervous and made the appointment. I feel such peace-of-mind and would recommend to all my Her2+ sisters that a cardiologist can really be helpful. More women die of heart disease than breast cancer! And I found it so interesting how after my surgeries last year, the doctors all insisted that I get a colonoscopy right away.........but no one ever suggested seeing a cardiologist!

I thought I'd start this thread to hear from other Her2+ women who decided to see a cardiologist after Herceptin treatments............I hope everyone is feeling very well and is living a "heart-healthy" lifestyle!

pffida

I, too, have been seeing a cardiologist, only I started 1/2 way through Herceptin.  I had horrible coughing, diagnosed as cardiomyopathy.  The cardiologist put me through all kinds of tests and scans, all negative.  So, the conclusion was Herceptin-induced cardiomyopathy.  I stopped Herceptin for 6 weeks, then resumed it only weekly instead of every three weeks. I tolerated that much better.

I continue to have echos, all negative.  The cardiologist said I should be followed for about 5 years.

Interestingly, both cardiologists I've seen (I moved so have a new one) aren't familiar with Herceptin side effects.  They are familiar with adriaymcin. 

swimangel72

I'm sorry you had difficulty with Herceptin Pffida - are you still getting infusions? I find that many doctors have no clue what Herceptin is - I'm like a teacher these days, as many of us when it comes to our individual dx's of BC!

marejo

That is great news Swimangel...I'm sure the peace of mind you are enjoying feels so good.  Once we get cancer and go through all we have we often dread that everything else will go wrong with us too BUT that surely isn't the case.  Aside from cancer coming into our lives many of us are healthy, thriving individuals.  It's important we strive to stay that way by taking good care of ourselves.  You making that appointment with the cardiologist was a good step in taking charge of your health and doing whatever you would have needed to do to help your heart.  Thankfully, there was nothing wrong with your heart so you can move forward with peace.

Good luck on your next surgery...I am sure all will go well.

Mary Jo

Juli50

After 11 weekly treatments of Herceptin, I ended up in ICU (in March) with pneumonitis and congestive heart failure. I had 2 oncologists, a pulmonologist, a cardiologist and an infectious disease specialist trying to figure out what caused it...duh, it was the Herceptin! My ejection fraction was 35. I don't need the pulmonologist and infectious disease doc anymore, but I am on Digoxin for my heart. Not sure when my next echo will be.

hugs

swimangel72

Thank you for your kind thoughts Mary Jo - and after I recuperate from my surgery I have no excuse for not really exercising harder to lose this weight!

Juli - I'm sorry you ended up with heart failure - did your cardiologist tell you if your heart will heal itself since you've stopped the Herceptin? That's what I've always heard anyway - so I hope it's true for you! 

Juli50

Swimangel - love your pic! yes, the doctor thinks my heart will recover. I feel great except that when my body gets hot, I feel like I'm being stung by thousands of bees all over my body! It must be a very rare side effect. I've asked 8 different doctors. It started 3 months after I stopped Taxol. It's going to be a painful summer!

hugs

orange1

Juli50-

Depending on your age, the stinging feeling may be hot flashes.  I saw a study that showed the different ways women experience them.   I call the ones you described as prickly.  They have also been described as "pins and needles."  Some other ways they are expressed: drenching sweat, deep flushing, extreme thirst and the ever annoying "walked into an oven".  I seem to get them all .

Good luck with keeping cool.  Jackie

Juli50

Jackie - I've been having hot flashes every day since I started chemo in September. The stinging started in mid-april when the weather got hot. My skin stings when I have really hot hot flashes, when I go out in the sun, when I get too animated when I talk, when I exercise, etc.

 Thanks anyway.

swimangel72

Sounds painful Juli! When I told my onc that the Herceptin ruined my fingernails, he said something very strange but interesting - that fingernails are part of our nervous system !?! and that Herceptin is known to affect the heart which is also connected to the nervous system. He said they did studies on some animals when they were embryos - and they all had nervous system problems as well as damaged hearts. It's amazing - weird info like that - especially when all the "systems" in our body are taught to us in high school biology separately.........but as the song says, "the leg bones' connected to the hip bone........." 

Gina_M

Juli,

That thousands of bees all over your body when you get hot - I have it too!  And I've had hot flashes for almost 7 years and it's not the same.  I believe it is a relatively rare neuropathy from either the chemo (I had TCH) or the Herceptin.  I am having my last Herceptin on July 20th (17 treatments, once every three weeks for a year) - I'll let you know if the stinging subsides.  What I do now is try to get to a cool place, put a fan on, remove clothing if appropriate, and drink cold water - lasts around 3-5 minutes when I get them (which is several times a day).

Gina

Juli50

Gina - Finally someone who knows what I am feeling!!! How long have you had the stinging? Did you have Taxol or Taxotere? I take Effexor (generic) so the hot flashes aren't as hot or as frequent. Do you take anything for it? I hope this doesn't last forever! Please keep in touch.

hugs

Gina_M

Hi Juli,

I've had the stinging since I was on chemo (active agent was likely the Taxotere), but at first it just happened occassionally when I was walking in the sun last summer - I always put it down to having too much clothing on or maybe a bit of an allergic reaction to something.  I even took antihistamines (which didn't do anything for it).  Later I noticed that it came on whenever I was warm - even indoors, and I started to try to "catch it" quickly and try to cool my skin before it was became an angry beehive!  It is unpredictable, but is not getting worse (not more frequent or more severe).  I am really hoping it subsides when I am off Herceptin.  I've had a few other neurological affects also - a bit of transient numbness (even on my head!!) and some rashes, but generally have been doing okay.  The stinging is the most annoying side effect I have.  My oncologist doesn't think it's related, but I find they don't attribute much to the treatments we're on, yet so many of us are writing with the same side effects! 

I don't take anything for the hot flashes - they are not too bad these days and I'm really tired of drugs!  Keep in touch.

Gina

jap

Hi Gina,

Nice to be in touch after the chem group.   I finished herceptin on June 8 and now would like to do more vigorous exercise.   How long does Herceptin stay in your system?  Did your oncologist tell you?

Thanks,

Jo Anne

swimangel72

Hi JoAnne - my onc didn't tell me how long Herceptin would be in my system, but judging from my fingernails and drippy-nose side effects, I estimated it was still working for about 2 months. After that, the drippy nose stopped completely and my fingernails stopped splitting. Hope this info helps you.

tkhenry

I need a good cardiologist that understands herceptin and arimidex heart complications!  Can anyone suggest one.  I am in California