← Return to Statistics on progression free survival while on SSA / Lanreotide

Discussion
Comment receiving replies
@davisnrn

It’s so hard to generalize one experience to others except as an example. In 2014-15, I had surgery for primary NET in my small intestine with a secondary in the mesentery (webbing). Surprisingly in 2018, i had 20+ NET mets in my liver and started Lanreotide injections every 28 days. Had embolization in 2019 of 9.5 of the liver mets (all they could reach). In 2022, scans showed some progression of liver tumors-more and increased size. And my Mayo oncologist said after 4 years on Lanreotide for me it was becoming less effective and he recommended Everolimus oral therapy or PRRT in addition to continuing Lanreotide. I am now almost 11 months on Everolimus daily plus Lanreotide monthly. Awaiting Mayo review of my recent CT scan as I may have one new liver tumor measured at 1.9 cm. and I am having some concerning side effects of Everolimus so may have to consider the next treatment option. However, other than fatigue and not having my usual energy and too much weight loss, I feel pretty good and say that I am in pretty good shape for the shape I am in 😃. I am also 77 years old and feel grateful for every day, even those sort of crummy days. I travel and need very little help, love and enjoy my friends and family, adore my husband. So 2024 makes 10 years I have been “doing NETS”. I don’t know how long I will do as well as I am now, but I am treating this now as a chronic illness to be managed as best as I can. So over time, NETS is always with me, but it no longer consumes my every waking moment. I am not a worrier, not how I am wired. If it’s in my control, I take the necessary action. If not in my control, I let it be. Much easier to do 10 years down the road than during the first year when everything was new, unknown, and a bit scary. Good luck and stay well.

Jump to this post


Replies to "It’s so hard to generalize one experience to others except as an example. In 2014-15, I..."

Dear davisnrn

Thanks for sharing and hopefully your Mayo review will provide positive results! Did you ever look into Immunotherapy? If yes; is this an option for you?

I am wired the same way as you and not worried if it is out of my control. The one thing I am caring most about is that my wife will be financially secure when I am gone, whenever that is.

Big hugs, Peter

I am curious what your average day of food consists of?
God bless

davisnrn:
I read your post I am going to be 70 and I am in my 5th year
I have metastatic NETS of the liver and bones
I have done Lanreotide, Octreotide, Bland Embolization of both sides of my liver
I started Everolimus and after 9 weeks I started having breathing issues which I just found out to be my heart
Are you willing to share your side effects if so I would appreciate that
It’s my need to know if what Everolimus has done to me isn’t permanent
Thank you
And good luck with your journey