Hi everyone I am coming up to six months since my diagnosis. I've had surgery, finished chemo, just about to start 30 sessions of radiation and have 13 cycles of Herceptin for HER2+ to go. Last Wednesday I was told that after a few more cycles I will probably have to stop Herceptin because my last heart test showed big decrease in LVEF after only 3 treatments. After this shock, I am getting mentally prepared for a break - I just hope I don't freak out too much when that happens as I am worried about what a break will do to my chances of a recurrence. I would love to hear from any other women who have paused or stopped Herceptin, how you mentally handled it, and what you were told by your oncologist about how it would affect your chances of a recurrence. I am also confused about the schedule for follow up tests such as mammograms/ultrasounds. Is it standard to have a mammogram at 6 months post diagnosis, or does this happen after radiation? Take care everyone, Nadine

Could be with the mammogram they are looking to see if there are any direct areas suspect where the radiation should also be targeted apart from their standard diagnosis of treatment. Be happy they are staying ahead of the game and ready to alter treatment if there are any blips in the radar so to speak. Make the most of the Herceptin break to get yourself stronger. Good diet and gentle exercise and time to smell the flowers is a good thing. If the Herceptin has been rough on your heart, just imagine the havoc its been reaping on any stray cancer cells. They shouldn't get their recipe going any time soon. Enjoy the break.

Hi Nadine, I am sorry to hear about the complications with your Herceptin treatment. Hopefully there will be others who can share their experience with you. I was not HER2 +. I don't know if it was 'standard' but I had my first mammogram/Ultasound at the 12 month mark post diagnosis. This was about 5 months after I finished chemo and then radiation. I continue to have them at 12 month intervals but also have check-ups with my oncologist which involve a physical examination. This means I see one of my doctors every 6 months. Take care. Deanne xxx

Hi Nadine My situation is similar to yours. After my last heart scan my function had decreased and I am currently on a four week break from Herceptin. The nuclear med person told me that after a break function normally bounces back. My oncologist also put me on perindopril to help heart. I will also see a cardiologist and have another heart scan before being restarted on the herceptin. On the mental front!! I am just trying to picture it as another bump in the road. As you have already worked out, cancer is the gift that keeps on giving. LOL I am also doing the YWCA encore program and finding that helpful. Also have booked a cruise for when I finish radiation. Take care, and do something fun with your break

Hi Nadine, Sorry you have issues with your herceptin, I had my 4th herceptin today, they are vidulant with making sure the old ticker is doing the right thing. I suppose we have to be confident they are doing the right thing by us. I am in week 2 of rads with another 2 weeks to go, then have my follow up ultrasounds after treatment in october so think it is normal, but speak up if your worried about anything. Take care. Cheers Jen ?? ?? ?? xx

Hi Nadine. I too was diagnosed HER2 positive in dec 2015. Have had 3 ops and first chemo was 2 weeks ago. Another scheduled this week. I am anxious about it all and I would b concerned like you. We have to place all our faith in the professionals which can be difficult. I will follow your progress which I'm sure will be great. A rest for your heart and then back to kicking cancers butt. Stay in touch. X airlie??

Pause in Herceptin treatment and schedule for follow-up mammogram

14 Replies

airlie
Member
10 years ago
Hi again,

You poor thing. My heart goes out to you and family. Bet you are sick of it. Hope no more trips to hospital for you and can get on the home run.

AirlieX
Deanne
Member
10 years ago
It does vary a bit depending on your situation and doctors preferences etc but most of us are seen by the surgeon each year for the mammogram/ultrasound check and then it may differ depending on the treatment you had as to who else wants to check you over too.

Sorry to hear you have had another trip to hospital. Hope you are soon feeling better. It takes a while for those chemo effects to leave us in peace! Rest up and take care. Deanne xxx
Nadi
Member
10 years ago
Thnx Jane. I'm glad you eventually got to the end of your treatment. Hopefully in 12 months time I will look back at this and think it was a silly nothing. All the best.
Nadi
Member
10 years ago
Thnx Airlie. Good luck with your treatment. Many women have no problems with Herceptin - I just happen to not be one of them
Nadi
Member
10 years ago
Thanks Jen, I am definitely speaking up. Ended up in hospital again last night with tachycardia and shortness of breath. Today I can't get out of bed and can barely stand as my legs feel like they are going to buckle underneath me. Doctor has has told me to take it easy and rest for 2 weeks. Hopefully by then heart will feel a little better.
Nadi
Member
10 years ago
Thanks. This is reassuring. I could certainly do without the bumps in the road!!!!!
Nadi
Member
10 years ago
Thanks Deanne. It's good to know you still have check ups with the oncologist. I thought once people finish treatment they were checked by the GP and don't see their oncologist. Makes sense that the oncologist does follow ups though.
Nadi
Member
10 years ago
Thanks Brenda.
Jane221
Member
10 years ago
Hi Nadine,

I had Herceptin from June 2012 - August 2013 and had a small break towards the end of treatment when the ECGs detected a lowering of heart function. I was really worried and actually said to both my oncologist and surgeon was it really worth the risk of me continuing Herceptin, but both felt it was in my best interests to try and complete the 12 month course so I was referred to a Cardiologist and immediately put on heart tablets (can't remember the name now!) and was even more closely monitored. They also adjusted my dosage of Herceptin. I did finish the course and was on the heart tablets for a good 6 months before my heart function was back in the normal range and I could come off the tablets and I no longer see the Cardiologist.

In relation to follow-ups it does seem to vary a little but a 12 month ultrasound & mammogram seems fairly standard. I still see one of my team every 3 months (once a year with the surgeon to go over the mammogram / ultrasound results, twice a year with my oncologist who regularly requests blood tests and once a year with the radiation oncologist as follow-up / physical check). I believe when I hit the 5 year mark next February this will scale back - thank goodness :-)

It was a significant bump in the road but thankfully the oncologists seem to be on top of how best to manage it so that with any luck it will be just a temporary set back. Best wishes, Jane xx
airlie
Member
10 years ago
Hi Nadine.

I too was diagnosed HER2 positive in dec 2015. Have had 3 ops and first chemo was 2 weeks ago. Another scheduled this week. I am anxious about it all and I would b concerned like you. We have to place all our faith in the professionals which can be difficult. I will follow your progress which I'm sure will be great. A rest for your heart and then back to kicking cancers butt. Stay in touch. X airlie??