Hope for survival

[Gizwil]

I have had metastatic breast cancer for 10 years. I have exhausted all treatments except one available to me, my last and final treatment is Tradeivy. It is for triple negative cancer although I have switched to estrogen positive. However there are no estrogen positive treatments left for me to try. This is an infusion and I will again have to lose all my hair and there is no guarantee it will work. Has anyone been on this medication? I live in Atlanta now and I’m dealing with the Piedmont Cancer Institute. I am getting a secondary opinion from Emory. Should I reach out and get even more consultations? Time seems to be of the essence since they want to start treatment Wednesday, My situation is further complicated because within the year I am going to be moving to Destin, Florida. I need to find an oncologist in the Destin area. I hate to say this but my present oncologist has been little to no help. She has no recommendations and has not offered any help regarding further consultations or referrals. I did let her know that I was going to get a consultation at Emory. She actually informed me of this decision last Friday on the phone between patients after she received my PET scan that morning. Everything seems to be happening so fast and I just feel paralyzed and do not know what to do. Any suggestions that you wonderful ladies have for me will be much welcomed. Thank you.

[Hazelgreen]

WOW! You have been through a great deal in the past ten years. I'm very glad that you are looking for second opinions regarding treatment possibilities.

It seems to me that there is no need to rush to start a treatment, certainly not by Wednesday! I would look for as much advice as I could find before I started more chemotherapy, especially if I'd been told this was my last possibility. Surely, the fact that your cancer is now ER+ means something to someone.

I've not read any research on triple negative, but I wondered whether you might find some information in the following blog on the Internet:

"Pat Prijatel, diagnosed with early-stage triple-negative breast cancer in May 2006 and author of Surviving Triple Negative Breast Cancer, discusses what that diagnosis has meant to her; why she started her blog, Positives About Negative; and advice she would give a person newly diagnosed."

The fact that you are now 70, and have survived treatments for ten years, suggests to me that your cancer may be slow-growing, and you still have time to fight it. I wish you all the best in your continued fight.

Hugs,

Cindy

[Cureforever in reply to Hazelgreen]

Hi , I have heard about many trials for TNBC. One is in the city of hope, CA Very successful, some are in the NIH in DC. Ask your new oncologist about trials. You have been going through this for ten years. It gives me hope. We also always hope for new meds. Some of them are supposed to come out this year. The compound ErSO is still on preclinical stage but we have hope for it. It cured animals completely.

Best,

Marina

[Pbsoup]

Agreed on second opinion!

You sound pretty alive and feisty to me. I wouldn’t let them put you out to pasture just yet.

[Nocillo]

I would definitely get a second or third opinion. I’m on my third oncologist and the first two never had any recommendations about where else to go or who else to see. It seems we’re on our own to do the research! We recently moved to Florida and I now go to Moffitt Cancer Center in Tampa. I’ve only had one appointment, but they are highly ranked and I am very hopeful of a good, long relationship with them. I hope you get the treatment you need.

[Garden-Lady]

I am sorry to hear of your trouble.I can highly recommend the book Radical Remission by Kelly Turner PhD. There is a lot you can do to help your body and there may be some ideas in the book that can help you. Sending love and hugs from England. Xxx

[Gizwil in reply to Garden-Lady]

Thank you so much Garden-Lady. I love to garden and hope I get an opportunity to do so this spring. I will definitely get the book today and start reading. I feel like I need all the help I can get at this point.

[Garden-Lady in reply to Gizwil]

I'm sure growing plants is a big part of becoming well again!I'm wishing you much health and happiness in the garden! Xxx

[Half-Full]

Sorry to hear of your situation and that your current onco has been little help. We’ve learned the hard way that none of these folks are perfect, but even the most flawed can provide value and potentially offer a kernel that sets you on a path toward improved health. If you have yet to lock in a particular onco at Emory Dr. Kalinski is good. He seems to be mostly focused on clinical trials, but that may be something to consider based on your feeling that you’re running out of options. Wishing you the best.

[Georgiamjb]

I'm so sorry you are dealing with this situation. I encourage you to get a second opinion at Emory as they are highly recommended for clinical trials in the south. This may be in my future also and I am thankful to not have to travel far. I wish you all the best and encourage you to stay open to possibilities!

[Gizwil in reply to Georgiamjb]

Thank you Georgia mjb, I have set up a referral appointment with Dr. Meisel but she cannot see me until Feb 22. So I guess I will be on chemo for a month.

[SMPG]

Don't give up! In fact, I even have a necklace that says "Never, never, never give up!". I would suggest you go to Dana Farber in Boston. They are doing all kinds of research and are very advanced in the treatment of cancer. Good luck to you!

[mariootsi]

I would also get another opinion and switch oncologist!

[lynnhbtb]

I'm sorry for your situation. I, too, have been on many lines of chemotherapy. I was on trodelvy for a few cycles. Yes, lost my hair (again) and I'm not going to gloss over, it was tough on me. I was prescribed it for triple negative BC. That's what it's meant for. As for oncologists in Destin, not sure, but I do there's a Mayo clinic in Jacksonville. Might be worth a consult. All the best to you. Oh, and I will honor my 10 year anniversary of diagnosis in February.

[hopenowandtomorrow]

There is also an MD Anderson in Jacksonville. 2. Baptist MD Anderson Cancer Center

1301 Palm Ave

Jacksonville, FL 32207

Praying you get a great oncologist with the best treatment options for you!

❤️🙏❤️

[Gizwil]

Thank you all for your very supportive and helpful comments and suggestions. It has really helped me on the mental side. I have had a second opinion at Emory with a wonderful doctor, Dr. Maisel. We went over my whole history of drugs and she was able to come up with four new treatments of chemo and two of hormonal that I would be a candidate for. I wanted to hug and kiss her she has finally given me some hope that there are more treatments out there. Believe it or not we decided to try AC, doxorubicin-adriamycin-cyclophosphamide. I never had this drug initially since my cancer was very small. However now that it has come back full force and has affected so much areas so quickly we decided to try to stop it in its tracks as quickly as possible. I know a lot of you have probably had this drug. I read about it and yes it’s going to be pretty bad but what’s my hair, nothing at this stage. And I now have a new doctor! I asked Dr. Maisel at the end of my appointment if I could switch over to her and she said absolutely. I am so excited she appears to be a wonderful caring doctor. I also I am in the process of setting up an appointment at MD Anderson. Next I will check into the mayo clinic in Jacksonville. Thank you for that suggestion I don’t know why I didn’t think of it myself. However I am going to give my new doctor time before I reach out for another opinion. Again thank you thank you thank you ladies for all of the support and encouragement you have given me. It makes a huge difference and I am feeling so much better for it.