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What to Expect After Kevzara?
In December, if all goes well, I will stop taking the Kevzara that was prescribed by a board certified rheumatologist at Vanderbilt Medical Center 10 months ago. The doctor said I did not need to taper off Kevzara and that "most patients do not have relapses."
Can others help me by describing their own experience ending Kevzara after a year? To taper or not to taper? Relapses or no relapses?
Any reports from those who have stopped Kevzara would be most welcome.
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@stonewheel
I'm not too concerned. I have been told that people die WITH this type of cancer but they usually don't die FROM this cancer. That was intended to be reassuring because this cancer is very slow growing. The excessive hormones that are produced cause most of the problems.
I'm more concerned about the surgery that was proposed which would remove parts of my abdominal organs. The cancer cells are very small and are hard to detect even with the most advanced imaging available. A radioactive tracer dye that binds to receptors on the cancer cells showed them where my tumors are. My primary site lit up brightly. I only have a couple of metastatic sites that lit up on the scan. Surgery is a "potential cure" but they need to open me up to look at everything before they know about the possibility of a cure. However, there is an injectable medication that can shrink the tumors and decrease the amount of hormones that are produced. I'm doing the medication and fortunately I don't have to inject myself.
The scans that were done show a lot of details. I get a chuckle when the report says that I have normal adrenals. My labs say at least different hormone levels are abnormally high. I'm only familiar with a couple of hormones other than cortisol. However, there are over 50 hormones in the human body and researchers continue to discover new ones.
https://my.clevelandclinic.org/health/articles/22464-hormones
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Neuroendocrine cells are found everywhere in the body but only a few of mine are known to be cancerous. My tumors are small and they aren't causing me to have too many symptoms. What symptoms I had in the past were attributed to adrenal insufficiency. Since I was already seeing an endocrinologist I know a little bit about hormones.
https://www.mayoclinic.org/diseases-conditions/neuroendocrine-tumors/symptoms-causes/syc-20354132
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I'm still processing all of this and it helps to write about it.
I had carpal tunnel surgery almost two weeks ago. As such, I had to stop Kevzara injections two months prior. I felt fine for a while. And then I didn't. I tapered down to 2 mgs of Pred prior to the surgery and now I'm feeling the affects of PMR in all its glory. I'm reluctant to increase the prednisone dose, so today, I took two Aleve to see if that helps with the joint pain. I have CT surgery on my other hand planned in two months, so Kevzara is out of the question. Right now, I'm going to grin and bear it. I will take a blood test to see my C-reactive protein level. My rheumatologist said as long as it is below 10, I should be ok. Time will tell....
@stonewheel
Thank you for your highly detailed and most helpful report.
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1 Reaction@dadcue
“ …the most advanced imaging available. A radioactive tracer dye that binds to receptors on the cancer cells showed them where my tumors are.”
Got to appreciate R&D.
Glad it is a slow variety.
Can they be “vacuumed” out? I wonder…
@dadcue
Look into a 6 month handicap placard if you're having trouble walking. I'm in NJ and my rheumatologist filled out the paperwork in July. I can renew for another 6 months, but after that it's either apply for a permanent placard or nothing. I don't use it all the time, only when necessary.
@kjoed53
Glad to hear Cigna did not require prior authorization for Kevzara.
My coverage for Kevzara for 2026 did require prior approval. The coverage was approved and provided by AARP Medicare Rx Preferred from UHC (PDP).
I have just been told that the AARP plan has dropped Kevzara for 2027 and I will need to change to HealthSpring, which does cover Kevzara.
@dadcue
Does this mean what I think it means for you? Is it a cancer that might have been caused, or helped by Kevzara (or other IL6 targeting drug or ?)
I pray it's not cancer for you and that there's something the Dr's can do to help you. I've decided not to seek treatment for my breast cancer but would be interested to understand if the Kevzara might have a negative effect on the cancer. Like will it make it progress faster or am I completely misunderstanding that link you posted from Nih, PMC11480914?
I hope and pray you're not facing yet another medical ????
Don't even know what to call these anymore. From one type nightmare to another..... Blessings Mike.
@boomermeg
I don't think my cancer was caused by Actemra. However, after I was diagnosed with cancer, my rheumatologist didn't think being on Actemra was a good idea. An active cancer diagnosis is generally a reason to pause or stop biologic medications because they suppress the immune system. We need our immune system to be at "full strength" to fight cancer.
The information I found suggests that IL-6 inflammation is something that drives the progression of the type neuroendocrine tumor that I have. I think dysregulated IL-6 inflammation might have provided the environment for my neuroendocrine tumor to form.
https://pubmed.ncbi.nlm.nih.gov/31466863/
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I have done CT-scans annually since 2020 to monitor my kidney stones. The tumor I have wasn't reported until 2025. However, an retrospective review of all my CT-scans back to 2020 showed that my tumor was present in 2020. Fortunately the tumor hasn't progressed very much since 2020.
I was still on Prednisone in 2020 but there is no evidence that prednisone increases the risk of cancer. However, I'm sure IL-6 inflammation was running wild until Actemra stopped that kind of chronic inflammation.
It is pure speculation on my part. Data on IL-6 inhibitors like Actemra directly treating or shrinking neuroendocrine tumors isn't a standard protocol. However, medical science knows that local IL-6 expression is heavily associated with tumor progression.
Actemra has only been paused by my rheumatologist until the cancer specialist gives his opinion about me continuing Actemra.
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2 Reactions@dadcue
I'm so sorry that you do have cancer. I know what it feels like to be told that and then all the questions that come up and decisions you have to make. I will pray that you get the answers you need and the best care you choose. I don't know how old you are or how you feel about going through treatments, but whatever you decide I pray it will give you peace about it.
This makes me question whether I should be on Kevzara as a steroid sparing drug or another one. Even though I decided not to seek treatment because it meant taking a pill everyday for at least 5 years (if I even live that long, and it has horrible side effects too), radiation including my auxiliary lymph nodes (which is bad), then chemo every 2 weeks for 3 months(which kills your immune system) along with a biologic at same time, then at end of the 3 months, another 9 months of the biologic only every 2 weeks. This would all be infusions at the hospital/cancer clinic which is miles away. Then there's the ecocardiograms, anti-nausea drugs every infusion, then there's many other tests, etc etc, and the costs of all this would break us and even put us in debt. In my case, it's not worth it to me. I won't do that to myself physically because I've seen friends go through chemo etc and before long they're gone anyway. I'm 74 now and already been through so much medical/physical pain/surgeries, etc that I've no desire to spend a year going through being sick a lot when I could be trying to enjoy whatever time I have left. My breast cancer is localized and I had surgery to remove it.
Initial core needle biopsy showed only DCIS Estrog pos, Prog pos, but surgical pathology also showed HER2. My oncologist said it will most likely begin to give me symptoms about 1-1/2 to 2 years or it could be sooner. No way to know. So it concerns me if the Kevzara could actually increase the cancer and speed up the process.
I talked to my Rheumatologist prior to starting it and she said it didn't affect my type of cancer. I don't know if that's correct or not now.
I hope you don't mind me sharing my cancer situation while you're going through your own.
May you be healed Mike and enjoy many years. Thank you for all the incredible personal experiences, knowledge, and medical information you share with us here. I've learned so much from you and I know others have as well. I pray you find out soon about whether to continue the Actemra and everything else.
Blessings Mike.
@dadcue
Ps I just went and read that IL6 targeted blocking antibodies can work to suppress the cancer. (PUBMED) Does that sound right to you? What your Dr said about the immune system being fully functional and needed to fight it makes sense.
???