herceptin's downside - not pretty

jeancmici Member Posts: 665 Member
edited March 2014 in Breast Cancer #1
Hi All,
Spent last week of the 24th May in the hospital getting my heart meds regulated - all NEW stuff. I have now entered the cancer/ heart patient category.

Took Herceptin from Dec. 1st weekly including the 17th of May - no heart checks. Had more and more coughing which got worse so when the 24th and the monthly onco's visit came due, I took an overnight bag with me and got a wheelchair at the door of the cancer hospital.

Can you believe - I had to do a little persuasion to get him to admit me!!!! Had an echocardiogram that afternoon - ejection fraction of 20. In Feb. 2001 before adriamycin I had a 59 EF.

Saw the cardiologist for the first rime on tuesday who gave me the bad news. Said my onco was right on the mark to admit me - this needed inpatient supervision to get regulated. I had to say - well, he was right on the mark after some persuasion from me - damn - how hard the patient must work these days.

Anyway I seem to have responded well to Vasotec, Lasix, and Aldactone along with the other 6 meds I still take - sigh........

In June I may be taking another chemo instead of the navelbine. Last of that was the 10th - WBC too low on the 17th.

I missed my zometa infusion the 24th but will probably continue that in June.

That's my update - I am not a happy camper - but the week in the hospital was a real rest for me who lives alone. Coughing subsided on Wednesday and my biggest job was filling out the meal menu each day.

Love to all - keep me in your prayers as I will for all of you.


  • SusanAnne
    SusanAnne Member Posts: 245
    Hi Jean. So sorry to hear of your heart problems. I always knew herceptin was toxic to the heart, but I guess some of us are more prone to it than others. I am surprised that your onc. wasn't ordering a MUGA or echo to keep tabs on your heart health, especially since you are also still taking chemo. One good thing about being in a clinical trial is that things like that are built into the treatment plan. Although I was the one to initiate my referral to a cardiologist when my EF got down to 51. The heart meds he prescribed have kept my EF level and have helped keep my blood pressure under control (it was never too high maybe in the 130's/90's). What has your pressure and pulse been? I can't imagine it's been normal. Does the cardiologist think any permanent damage has been done? Would he entertain the idea of restarting the herceptin once things are under control?
    You are so right that being a patient these days takes a lot of research, knowledge and persistance. It still amazes me that even the best of doctors still don't always see the big picture. We have to be on top of things at all times. I hope your treatments get back on track smoothly and you experience no more bumps in the road. Take care.
  • judiek
    judiek Member Posts: 71

    So good to see you post...I had this funny feeling something was wrong. I'm sorry you have to deal with this now...it's always something with this disease. I go tomorrow for chemo and scheduled to see the doctor. He asks how are you doing...and I would just like to have one week that I could say "fine" but I always seem to have something new pop up week to week. Other than all you went through this past week how is everything else going. Have you been scanned lately...are treatments working. You continue to be im my prayers and it sounds like your back to your old self. It pays to be assertive.


  • krisrey
    krisrey Member Posts: 194
    Hi Jean,
    I am so sorry to hear about all your stuggles. I have no idea why the patient has to work so hard and push for treatments. The patient has to be their own avocate along with all the other struggles of fighting with cancer!!
    I will keep you in my prayers.
    I wish you well Jean,
  • tulip66
    tulip66 Member Posts: 32

    Your reality is a great fear of mine. I am on Herceptin and have been on it since Aug 2003. Luckily my Onc. is very conservative and has me checked every three months with a MUGA or Echo. My EF also went down slightly in the beginning but has remained stable. I go in for another ECHO this month for my 3 month check.

    I will keep you in my prayers and hope that your EF will improve. The cardiologist that I go to said that sometimes drug induced reductions of EF can get better once the drug is stopped. I pray that this happens for you. Hummer wrote that she is getting a cough and slight swelling of her ankles. I hope that she insists on getting her heart checked.

    We will all think of you and wish you well.

  • jhope
    jhope Member Posts: 58
    Jean, I have no experience in this area, first time breast ca survivor after chemo and rad. I just wanted to say God bless you and encourage you to keep fighting, love, Julia
  • inkblot
    inkblot Member Posts: 698 Member
    Hi Jean:

    So good to see you back!

    Your doc could do with a swift kick in the you- know-what for not following protocol with the MUGA'S/ECHO'S to track your ejection fractions and I know you're just the lady to give it to him!
    Most all the literature states that Adria. alone can cause some to have heart problems, as can Herceptin, and that the two combined, can increase the chances of cardiac problems. What was he thinking?

    And you're so right...we have to advocate for ourselves, try to stay on top of everything imaginable and then tell our docs not only what we think we need but justify it as well. You did great in pressing your doc to do the right thing.

    I'm happy to know that you've responded well to the new meds and hope the level of improvement continues and that you're already feeling more energetic.

    What is the plan re the Herceptin now? A temporary hiatus until the fractions improve?

    So good that you had a much-needed rest while in hospital. Wondering if the hospital you were in offers those new "gourmet" meals yet? They're touted to be absolutely delicious so hope you got to sample some of the latest, greatest hospital cuisine.

    Keep the faith and keep us posted!

    Love, light and laughter,
  • DeeNY711
    DeeNY711 Member Posts: 476 Member
    I was so happy to find a post from you tonight! I had to giggle at the hospital menu part. The dietary ladies always found it astonishing that I consumed everything on every tray at every meal and placed the refuse in a neat little pile. It took until Day 3 to realize how long it was between supper and breakfast the next day, and learn to squirrel things away for later. Then I had it all! 3 meals a day prepared by culinary arts students, AND SNACKS for watching TV. Whoop-dee-do!
    Love you,