Stop Perjeta or not despite risks?

I was doing some reading on HER2+ metastatic breast cancer drugs Herceptin and Perjeta and came across this article. I did a bit of digging and found more. They are saying there is a 1% difference taking the combination than taking Herceptin alone.

I started Herceptin in 2002 when my breast cancer metastasized farther. Before then I didn’t know I was HER2+ and the drug was new on the market. I stayed on for 11 years. When my oncologist suggested I stop, I went for 2 more opinions. All 3 oncologists said there is no research or data showing how long to stay on the drug, or risk of re-occurrence after stopping. How can the drug company and medical community be so irresponsible? The main advice was, “If the cancer comes back you just go back on Herceptin.” So I went off. It turned out to be the wrong choice.

After a few months my right breast swelled. Not gradually, but immediately as if someone filled a water balloon. I went to the ER. No concern at all. They told me to see my doctor on Monday. My doctor thought maybe it was a form of lymphedema and ordered a PET scan. His nurse at the time was very ill and out of the office for a couple months. He had many fill ins for her. It took a couple months to get the scan ordered and approved. A week after, I called the office since I had no follow up appointment. A temp nurse told me my PET scan was good and I didn’t need to be seen for 6 months. I still had a swollen breast to deal with. I just hoped my body would start absorbing it.

Six months later at the appointment, my doctor is looking over my chart and scan. He sits next to me and says, “there is something, but I don’t think it’s cancer.” I can’t remember saying anything. I think I was so livid I was in shock. I never went back to him.

Moffitt is a three hour drive for me. I’ve gone many times for advice on my treatments since 1996 when I was first diagnosed. This time I really needed help. They were shocked at the lack of care I received. They immediately scheduled a needle biopsy of tumors under my breastbone. I saw a surgeon and plastic surgeon who worked together, and was scheduled for the replacement of my 20+ year old implants. When I woke from surgery I was told they had never seen anything like it. They drained over a liter and a half of what they described as “chunky blood” from the swollen breast. Small and microscopic cancer tumors were all throughout the blood. There was cancer within the capsule the body creates around the implant proving my cancer never went away, it just laid dormant while on the Herceptin. This is a year after my breast originally swelled and close to a year and a half after stopping my Herceptin treatment. New scans showed the cancer had spread even further than before. Good news from this, Gummy Bear implants are amazing!

Moffitt recommended an oncologist whom I loved. My chemo cocktail started with Herceptin, Perjeta and Abraxane. My body reacted with itching, welts all over my body and in my mouth.  Abraxane was switched to Taxotere, which I had been on before, but it didn’t get better. The welts went from my body to my face. I tried covering them with make up when I went out. Sometimes they were so raw, especially the ones on my eyelids, that they would bleed. This was the hardest time I had ever had on chemo. I was weak and in pain all the time. I remember being with family at our Christmas vacation and hiding as much as I could from them. We all had little villas in the same area. I was in my room and had just removed my wig and washed off makeup when I heard someone fall. I ran out and no one was on the stairs, then I noticed my dad through the window laying still on the front porch. I screamed for everyone to help. Once we got him up and realized he was okay, that’s when I noticed the shock on everyone’s faces seeing me. I hadn’t hidden my baldness in the past and had actually been quite proud of it, but this time it just looked so much worse because of the sores. I had one last treatment when we got back. I actually cried to my boyfriend that I couldn’t take anymore. I was beginning to think this chemo cocktail was going to kill me. My blood counts were so low and was on prescription supplements and had been through the fiery, painful potassium IV’s. I had a momentary breakdown, but found my courage once again. I made it. Tests after treatment showed no active cancer. I am to be on Herceptin and Perjeta for life. My previous chemo’s were FAC in 1996, and Herceptin and Taxotere in 2002 continuing Herceptin until 2012. After a year with the oncologist I loved, she stopped taking my insurance. Luckily I found a new oncologist closer to home. He is very caring.

.

Now back to my original thoughts on the articles above. My hair never grew back right. My thick long naturally curly hair that came back better with each loss was now frail, very thin with female pattern baldness. At first I thought I qualified for the Taxotere lawsuit, but didn’t because of thyroid issues. Last week I had half my thyroid removed because a nodule was irregular and covered in calcium deposits. Thank goodness it was benign. I am on medication for Hashimoto’s that is still in the other half of my thyroid. I was hoping my hair would come back but I’m not seeing any new growth.  I get a lot of side effects from Perjeta that I don’t get with the Herceptin.

My question is… if Perjeta is only mildly helping the Herceptin, do I stop it? I had 11 successful years of Herceptin alone keeping my cancer dormant. I had more energy and was generally healthier. I am 52 years old, and now my babies are grown and I have a grandchild and another on the way. I do get annoyed wearing wigs because Florida is so hot, but generally don’t mind them. I have many in a variety of colors and have fun with it. My main concern is my quality of life. I am always tired, half of my left hand is always numb and I drop things all the time. I get rashes and my skin is now allergic to so many things it wasn’t before like adhesives and latex. I am having a hard time finding latex free socks. The welts I have from the surgery tape I had last week are still not going away! I have problems with Benedryl so I get no relief.

Is it worth the risk to stop Perjeta? 

 

Me and Bella