Off All Meds?

[HavahJ]

Are any of you stage IV's out there ever off all chemo and off herceptin and just living normal, or is that always going to be impossible?

[Sherryg683]

From what my oncologist told me, I was always going to be on Herceptin. I can live with that...sherryg683

[lu ann]

Dear Havahj,

I was diagnosed with recurrance Feb. 25, 2004. I had 22 radiation treatments March 2004 thru April 2004. I was on the following schedule for zometa, chemo, and herceptin:

* June 2004 thru November 2004- monthly zometa, (taxol, carboplatin, and herceptin 3 weeks on/1 off)

* 4 weeks off everything but zometa

* December 2004 thru January 2005- monthly zometa, (navelbine and herceptin weekly unless counts too low)

* 4 weeks off everything but zometa

* February 2005 thru May 2005- monthly zometa, (gemsar and herceptin 2 weeks on/1 off) I had to have shots for low white blood cell count.

* 3 months off everything but zometa

* July 2005 new doctor and treatment center

* August 2005 thru December 2005- monthly zometa, (gemsar and herceptin every other week) I never had to have shots for low blood counts.

* December 2005 thru May 2006- off everthing but monthly zometa (unless I start having symptoms)

I have had some type of cancer treatment 14 out of 24 months with 10 months off of everything but zometa. It has been great to have the long breaks. I hope this has been encouraging for you.

Love and Blessings
Lu Ann

If you are NED or stable the decision is really up to you, no matter what anyone says or recommends.

When I was dx'd with mediastinal node/s mets/ spot on lung/ spot on pelvis I did several months of Navelbine/ Herceptin. I responded well and scans showed NED, so I discontinued tx. I am also er+ pr- but do no tx for that.

Yes I have brain mets and have had a third recurrance, but my body is still NED so I have only focused on tx for my brain mets. It's been three yrs with body NED.

If your desire for QOL outweighs the fears of going 'naked' and without tx, yes you can.

best wishes,
pattyz

[aquinis2000]

Havah, I am stage 4, mets to liver, mediastenium, axillary nodes bilat, and two breast tumors. my ct scans showed disease in all areas two months ago, that are diminished from from original dx. but still present. i had ac plus taxol. at the beginning of january, when the last ct showed improved, but still present disease. I decided to make a clean break from the chemo. the herceptin was either going to work or not. so i quit. my tumor makers are still within normal range as of last week. my hair is growing in, my energy is back, i don't feel like a mad woman anymore, and i have my life back. I enjoy each day and can remember now what it was like to be me. Before the dx. Do you still remember that person? i knew mentally I could not go on with the chemo. I have a firm faith in My Lord and Savior and know that God is always "on time". He will take me when he is ready. His time., not mine.I have been able to lead the youth group again at church and get out and live again. I am in complete denial now. I pretend it's not even there. I feel great, and even if that is just for a few more months, it's the way I need to live. Feeling healthy. I know that there is a place prepared for me already with God, so in the meantime I plan to ignore the big elephant in my living room. I have read extensivally on herceptin and chemo, life expectancy, time to progression and quality if life. For me.........this is the best route. I'm glad I stopped living the world according to oncology today and started living my life again. the cancer will take me in the end, but I am going out my way. It has empowered me greatly. God bless you and your decisions. I do take the herceptin weekly, with no side effects. So if the good Lord is willing, it will prolong my life, and if He is not. I'm going home. God is Good.

God bless you. Your response was so honest and from the "gut". I do not believe for one minute that you are in denial, I feel that you have made peace with what is. Your wisdom inspires me. What a beautiful woman you are. - kim

[Patty H]

I am stage 4 and right now I am stable. I am off everything except zometa, for my bones. Being stable means the cancer is still there but not growing at the time. we will scan regulary and when or if it starts growing again, then I will go back on chemo. I am off herceptin because it didn't seem to work for me alone. It does feel good to feel like myself again. But it is always in the back of my mind. Patty H

[lu ann]

I felt the same way you did last May when I quit taking chemo and changed doctors. I couldn't even go into his office for shots without getting nauseated. I even vomited one time. The nurse had to come out to the parking lot to inject me.

I decided to get a second opinion. My oncologist understood when I told him I needed to change doctor and treatment center.

I resumed treatment at the new facility with the same drugs previously used, but on a different schedule. This worked well for me.

I support your decison to rely on the Lord. This was my plan from the beginning when I was first dx. with recurrance. At first I agreed to zometa, radiation and herceptin. But, I was greatly influenced by my family and medical support to at least try chemo.

So far it has worked for me. I have had enough stability to have breaks included in my chemo schedule.

It is totally your decision. I completely understand. I did not want to live the rest of my life either in bed in fetal position or with my head in the toilet. So far I have had a pretty good quality of life.

Love and Blessings
Lu Ann

[aquinis2000]

Something you said really struck a chord with me,....."But, I was greatly influenced by my family and medical support to at least try chemo." That is the core of what I am sure every one dx'd has to go thru. I never wanted the chemo in the first place, as my father...two of his sisters, his brother and both my mothers sister have died from cancer. (or from chemo, as i like to say). But the look in my husbands eyes, and my family. They were willing to try anything.But I never felt that way. I did it for them. But after my last chemo in january, I knew for my sanity for my faith, and for myself I just couldn't do it anymore.I like to say I just keep a low profile and constantly assure them how great i feel now. I am back!!!!!!!!!!!!!! My mind is the way I remeber it, I found myself again. I really wish someone had written a book for family and caregivers about how much they influence the treatment choices of cancer patients. And an honest talk about the difference between supporting someone and their choices, and making the choices for them. Does anyone really want to say......I love you, but not enough to be a guinnea pig the rest of my life. Nobody ever really tells the ones who loves them the God's honest truth about how misrable we are during treatment. As women, we just keep on trying to take care of everyone else. even if it kills us.Well I feel like i escaped from that trap and as i said before feel empowered, and strong in my decision. I know that probably sounds like a selfish, self serving decision. I hope someone can understand it. thanks for listening. A2

[StephN]

When I was found to have raging mets in my liver and starting into my bones only 6 months after finishing Adriamycin and Taxotere, I did not have a lot of time for hard thinking. Either I was going to start a treatment right away or let this disease take me when I was not ready. And there was NO GUARANTEE the treatment would work.
For me "not ready" is also a message from God. Overcome this disease. There is more for us to do - family and friends need us, not to mention our own projects left unfinished. Some will say that these things should not matter. But for me helping my husband finish tracing lost family roots from France to Russia has been very rewarding and now we know how important his ancestors were and what they contributed was found in the archives in France. We have met the achivists in both Paris and Russia and there is something for posterity as well as answers to long unanswered questions now in print. Mystery mostly solved, but more work is ongoing.
My parents are going to celebrate their 60th wedding anniversary this year and I am having a great time planning this with my two sisters. I also recovered to help my parents move to a beautiful new home they built. They were extremely appreciative of the help and Mom admits she is not orgainzed enough to have done what we did together. I am always the one who does the moving.
I have enjoyed meeting all the women (and their supportive hubbies) from this site when they come to Seattle. Representing this group in San Antonio for 2 years running has been an invaluable experience for me, and I know I have shown people there that they do not have to give up on Stage IV Her2 positive patients.
For me there are still SO many reasons to live on this earth that I will continue to take my Herceptin as long as it works. A new "Normal" exists for me - I AM somewhat changed. I feel well enough to get a lot accomplished and will gladly shed my "mortal coil" when God calls. I did not yet feel His call. This is something that each one of us will search inside and know about.