herceptin and breathing problems..

colleen42

when i started on herceptin last year my muga went down a bit and i was feeling like i have a sponge in my chest when i breath..i had my heart and chest xrayed and they said all was okay, now that I am off the herceptin (for a month now) I still feel like i cant take a deep breath and my face gets beet red when i exercise(which it never did before)

I keep thinking its my heart, but my muga just show a slow decrese while on hercpetin...how long before this crap gets out of our system? i am going in for a final muga next month ....has anyone else experienced breathing issues while on herceptin. (and left shoulder blade aches-this started when they started me on herceptin too)

lexi4

Hi Colleen,

I am having some shortness of breath issues right now. Actually for a couple of months. I have an appt with my onc at the end of Oct. I ahven't called in sooner because I feel like I am always nervous about soemthing!

I am not sure if it would be heart or lung issues. I think it's great news that the x-ray didn't show any cancer issues(Thank you Lord). However, I know it doesn't feel good to not know what is happening. I beleive the herceptin stays in your system for a month and a half or two? I could be wrong. I do hope that you are feeling better soon.

Hugs,
Lexi

EachDay

I remember having that feeling to some extent.
What I wonder about is what does the chemo, the radiation and the herceptin do long term...and are we at a higher risk of developing something like asthma.
Definitely something I'd want to share with my doctor. It could be something completely separate from the herceptin but it's more noticeable because of the herceptin.

DebbieB

Unfortunately the risk is heart damage. I had 4 A/C and rads to the left breast 5.5 years ago. I thought I was totally out of the woods and in April started to experience shortness of breath. I went to the doctor 5 times in 4 weeks (and I actually saw 3 different doctors so it wasn't just one doctor that missed all this) and the docs thought it was lingering bronchitis. I ended up in the ER with swollen ankles and a doctor that took one look at me and said it wasn't lungs, it was heart. After 5 days in the hospital, I found out I have heart damage from the Adriamycin and am now on 8 different heart meds trying to increase my Ejection Fraction from 18-22% to the normal range of 55-60%. It's scarey! But if I had it to do over, I would still do the Adriamycin because it was my best option in 2001 for highly HER+++ aggressive BC. I just wish that I had understood the symptoms so I could have caught this much sooner. All the doctors told me that I did not look like someone who would have congestive heart failure! The cardiologist said he is almost positive my heart damage is from the Adriamycin. The heart cath did not show any blockages, I do not have high BP or high cholesterol, am not overweight, and I don't smoke or drink. I knew something was not right and it took me seeing a 6th doctor to finally figure out what the problem was.

Debbie

EachDay

I'm glad to hear that you kept going to get an answer.
They tell us of the "risks" of heart damage from the Adriamyacin and from Herceptin, but then I think some doctors don't want to admit that they have caused a problem.
I was talking to a friend today who was going for test results (her cysts are just cysts, not breast cancer thank goodness), and talked about the "down the road" where I'm sure there will be little things that pop up, probably connected to chemo.
And I'm with you Debbie...I'd still do the AC, the Taxol (even though I have this miserable neuropathy), the rads and the Herceptin because of the good I believe they have done for me.
My heart? I have a history of heart disease in my family and thought that would be my downfall...never dreaming about breast cancer.
We just don't know everything, or what might happen or what we have left ourselves open to. But we have to be vigilant and keep after doctors because we know our bodies best and we know when something isn't "right".

DebbieB

You are so right about our never knowing.

Heart problems ran in my family...no cancer at all. And now I have an oncologist and a cardiologist!!! It just doesn't make sense.

If there was one thing I learned while going thru bc it's that you have to take responsibility for your health care. You have to push doctors sometimes. I just could kick myself because I knew that Adriamycin could cause heart problems. But I assumed the symptoms would be like a heart attack and not shortness of breath.

But I am here, I am alive and I actually feel great! I feel like my meds are working but my cardio wants me on the meds at least 6 months before he checks to see if my EF has improved. I am hopeful!

EachDay

I'm hopeful for you too.
Heart problems in women do present differently than they do for men, so I think it's good that you've informed us all that the heart problems associated with chemo and herceptin might not feel like a "heart attack", but the damage could register as shortness of breath. This is excellent information from someone who has been there.

I like having an oncologist and a cardiologist (I have that because they "thought" I'd had a heart attack at some point in my life due to a funny ecg...no heart attack and I've had a battery of tests!)...it's nice to know we have some of everything and have all the bases covered!! I feel sometimes like the medical profession "owns" me, but that's okay..I like having this in my back pocket...just in case!!

tomer

I had horrible and scary chest pain and it turned out to be from a muscular/back problem. I'm seeing a biotherapist who does deep tissue massage and gives me exercizes, and the pain has almost disappeared.