I have been struggling with side effects from Herceptin/perjeta infusions. Last few days I was getting short of breath. I have asthma so took inhaler. No relief. I asked my Pcp to do echo and went in today for it and then saw him. It’s my heart being stressed from treatments-cardiologist reviewed echo also. So now to continue treatments I have to take two cardiac meds. I am drained.
This is getting to me on every level. I can’t get a break from side effects of treatments. Dr told even if I go into low numbers on echo he will not ask treatments to stop. I looked at him in disbelief. I said ok so if it goes into heart failure I have to continue? He said yes because once treatments stop it will reverse itself.
I have another treatment tomorrow. I said to myself I must be nuts to continue this. But continue I will. I hate this with a vengeance.
I feel for all of you when I read your posts. I celebrate your wins and I feel the pain of suffering. I haven’t wanted to post dealing with Gi issues after treatment and now this. But I follow all of you that post and pray for all of us.
Thank you all for being here.♥️♥️♥️
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Francesca10
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I’m very sorry to hear this. I am concerned your doctor says he will continue these meds even if it puts your heart at risk. Have you discussed quality of life? Or is he one of those doctors that trots out every tool in the arsenal without considering the risks and rewards of your actual daily well being? It sounds like he is robbing Peter to pay Paul as the old saying goes. I respect how exhausted and drained you are. Perhaps you can ask for a second opinion and/or have a friend or family member advocate for you. The hospital social worker or patient advocate is a resource they can consult on your behalf since all of this is so fatiguing.
When I’m worn out, and I realize I can’t absorb it all, I some times delegate these questions to my husband or sister. I will be in the room when they do this, but I know my nerves inhibit my listening and comprehension occasionally. Perhaps some palliative care should be considered as well. Please let us know how you are doing.
Thank you. Saw onc today-we talked long time. I have one of my kids with me so they can hear for me. Yes it helps great deal because I go into overload.
All three doctors are on same page- if treatment works can go for years/ but my onc said he will stop perjeta if side effects are bad again/put me on prednisone to try to lessen them.
He is in agreement to have echo before every treatment/ thats a lot for me- every 3 weeks. I have to do it. I appreciate their monitoring me so close.
We did discuss quality of life also. He is trying everything he can to help with side effects.
I had liquid biopsy in sept:it shows what mutations are present in the br ca causing Mets so treatment is very specific. He said today my result was unexpected-we expected pik3 but her/neu was negative and became positive and pik3 was positive. That’s why they are pushing the treatment,
I agree with you; however, I will hold firm if it’s not doable.
So this sucks big time and I’m worried how tired and discouraged you are getting. The little light in all this is that it is reversible. So we have to find out how long do these treatments need to go on? Let us know what your onc says. I’m thinking of you all the time💕
Praying for a miracle, I am so sorry to hear this is happening to you. I'd find another doctor because EVERYONE knows, your health has to be weighed against the treatment side effects and there is just too much out there that will be becoming available for you to let your health get too frail; take a break, get better, THEN decide! just my opinion, you know, we all have one. the main reason I say take a break is because you are stressed. I don't know how you follow God, but I look for His peace in the way He is leading me, and He never fails. He will give you the green light or the red. God bless you and heal us all in Jesus name, amen!
I have to keep on keeping on- I had liquid biopsy so treatment is for mutations in br ca found- it is very specific to mutations. Glad I had it done but treatments choices are limited. Thank you for replying♥️♥️♥️
amen! what doesn't kill us makes us stronger! I thank you Father, that no matter what we see, think or feel, no matter how weak our flesh, we praise You, that you are still in control and will bring us through stronger than before! In Jesus name I pray, Amen! <3
Dear Frances: It’s hard to hear of your suffering as you endure the treatments. Praying for relief and your body responding well to the pills & the treatment. If you could see light at the end of the tunnel, counting down the treatments, it may give you the strength & hope you need. Love, hugs, & prayers for you ❤️🙏❤️.
Sorry to hear this treatment is bothering u. Getting my Herceptin/Perjeta and Zometa now...😀...I think your Onc is pushing hard for this because is can last 5 years plus...I know someone at my center at 5 1/2...I’m at 3 1/2...so I hope this new heart med protocol gets u back on track!
Another 6 hour day only because I refused 30 minute infusion time for each drug. It was 3 hours each last time to lower reaction risk. I said an hour for each and I was scared. I had to wait for order to be changed.
Thank God my doctors respect me and my requests.
Yes you are right. Three doctors watching me like hawks lol. Echo before each treatment now.
Thank you for medication info. I did look in my nurse drug book- they appear benign and your info helps so much. Starting cardiac meds tomorrow.
How are you feeling? Are you taking pain meds? Are they helping? I have pain in my ribs-seeing radiation oncologist next week- I had radiation to t7,t8 last year- helped pain-went away .
I’m on the herceptin perjeta 3wk cycle also. I had taxotere mixed in for 7 cycles. I’ve been on it for 10 months now. I have treatment #14 Tuesday Dec 10. I’m so sorry you’re having the heart side effects. I just don’t believe your dr would continue it if he didn’t think the heart meds would work. Praying your body adjusts to the treatments and it works miracles for you.
They write my treatment( round) # on my chart...hard to believe today was #64! 😱💕(Herceptin/Perjeta) Hope this treatment works for all of us for a very long time!
I don't agree with those here who suggest getting another onc because it sounds to me as though your onc really thought all this this thru and was willing to spend extra time with you and your daughter. But if you are not already seeing a bc specialist onc at a major cancer center (preferably a Comprehensive Cancer Center--here is a list of them under "resources" on this lists home page) and perhaps a cardiologist in the same medical center...there are cardio-oncs...to look at this with experts. I also wanted to tell you that I sure understand how overwhelming it is to be dealing with other serious conditions along with this very serious cancer! Being tired adds to the stress! I sure don't feel like my pre-cancer self! Of course as a long timer with mbc (16 years in 3 months, 3/1 is my cancer-metserversary) I am alot older, 73, too. I used to have the energy to attend major bc conferences and to advocate for others. I've lobbied Congress and my state legislature on behalf of cancer research, been trained as a MBC patient advocate, and done some major traveling since diagnosis, but none of this in the last 2 or 3 years. I barely keep up with the laundry and grocery shopping...fortunately, I have a helpful and understanding husband! Before cancer, I had only two doctors--primary care, and gynie. Now I have enough docs to field a baseball team! I take 17 pills a day and have two inhalers, plus use a C-pap when I sleep, and wear compression hose and hearing aides! But I can still love my family, enjoy friends and pets, an have my sense of humor! Find aspects of this to laugh at really helps alot! I was actually carded last week when buying a bottle of bourbon laced egg nog! That sure made me laugh!
I trust my onc. Not interested in other opinions-don’t have the time or the energy or money.
I cannot take my RN hat off anymore. I did in the beginning and it does not do me good. I find with so many doctors I have to advocate for myself and stay on top of it all . Thank God they all respect what I say. It gets tiring though. I requested the port for infusions.
I also requested the echo when I got sob because I knew it was not my asthma. The cardiologist works with Pcp and oncologist so I have faith in her.
I appreciate your responses. You give me so much hope. Thank you♥️♥️♥️🎆
I think our previous professions can be a help and sometimes a hindrance! I worked as a therapist (LCSW) for twenty years and then became an Episcopal priest and did a hospital chaplaincy internship, so I have experience with the health care system from different perspectives (and have great inner resources, lol). I've "fired" doctors who don't listen to me, fortunately never have had an onc like that! I have alot of respect for RNs and have found that alot of onc nurses are really helpful with coping with all that comes with this crazy cancer. I love my port, too! It sure makes infusions easier! I'm not on any IV meds now, so haven't needed it, but we've left it in since I may need it in the future. I get it flushed every 8 weeks (and wish there was a different term for that! ) I hope you will do as well as I have and live for a really long time with this stupid cancer. More and more of us do !
This is not an easy one at all. It seems that oncologists tend to deal with the big picture..and if your lucky refer you to other specialists. But basically its on you and hopefully you can find a good family practitioner to guide you. I changed medicines last week and went into a bit of depression. I was struggling for two weeks because developed high blood pressure ,side effect from clinical trial second arm. And just the thought of side effects now threw me for a loop. Then took a deep breath, realized I'm starting to drown,then read something from from a real living example of positive thinking from a truly special leader sand Rabbi...when we think good it brings good. That is actually part of how the world works....and for everyone it is a challenge and work. And so much more so for everyone here. It went on to say that even when one cannot stop those negative thoughts ,not to push them away...but replace them, read something ,something good, I read miracle stories.
Whatever can put you in a different place.
I went from kh good health,hardly ever
needed a doctor to stage four.
I was misdiagnosed less than two years previously, thats another story
Coming to grips with losing so to speak health and being dependant on medicine is quite a challenge. And lets face it,how much do the ones around us really get it?
I have a close friend who's life was saved by treatment, but got so many side effects, I admitted only now did I really get her struggles. But she is the one who is encouraging me to keep thinking good. I'm sure you are doing your best.Keep up the good work
May you be blessed with good news, well being, a complete recovery
May it get easier....quickly.
We all still have so much to be thankful
for and now can truly appreciate all the things everyone takes for granted.
PS....did you mean digestive system issues. Did you ever try pure frozen aloe vera....no additives.!Very soothing
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