banners
Kickas Main Page | Rights and Responsibilities | Donate to Kickas
Forum Statistics
Forums33
Topics44,191
Posts519,895
Members14,112
Most Online1,931
Jan 16th, 2023
Newest Members
Katewalk80, 123movie, Philipp, Spingypsy, Hah0821
14,112 Registered Users
KickAs Team
Administrator/owner:
John (Dragonslayer)
Administrator:
Melinda (mig)
WebAdmin:
Timo (Timo)
Administrator:
Brad (wolverinefan)

Moderators:
· Tim (Dotyisle)
· Chelsea (Kiwi)
· Megan (Megan)
· Wendy (WendyR)
· John (Cheerful)
· Chris (fyrfytr187)

QR Code
If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.

KickAS QR Code
Previous Thread
Next Thread
Print Thread
Joined: Sep 2001
Posts: 2,609
C
Cindy Offline OP
General_AS_Kicker
OP Offline
General_AS_Kicker
C
Joined: Sep 2001
Posts: 2,609
I've not been on here much in decades... I've been on a biologic since the clinical trials for Enbrel. I'm currently on Remicade, but have just been dx'd with cervical cancer. My rheumy was wanting me to switch to an IL-17, but that is probably not going to happen with my new diagnosis.. To tell the truth, I'm addicted to feeling well. In 2000, I was unable to even dress myself and the pain was unreal... then Enbrel happened. I am afraid of everything going wrong. I don't want my iritis or AS to flare. I'm afraid of the pain. I afraid of cancer. I'm holding on to faith and my family, but today I'm really scared. I learned this yesterday.


Hugs,

Cindy

Back pain since early childhood. Dx'd with HLB27 iritis in '96, AS in 2001, FMS in 2002.
Joined: Jun 2023
Posts: 5
Likes: 1
G
New_Member
Offline
New_Member
G
Joined: Jun 2023
Posts: 5
Likes: 1
I'm praying with you for you.

1 member likes this: Cindy
Joined: Sep 2001
Posts: 78
L
Apprentice_AS_Kicker
Offline
Apprentice_AS_Kicker
L
Joined: Sep 2001
Posts: 78
I haven’t been on here for many years also and have been on Biologics —Remicade for years, which worked so well, and then I got a cancer diagnosis last Jan ‘24, and I had to get off my biologic also. I had stage 4 Ovarian Cancer and am happy to say that I beat it! My pain in my body from the AS was managed pretty well by the chemo, since it kills your white blood cells. Then in Sept I got the wonderful news that the cancer was gone and I am now taking the maintenance infusion of Avastin for a year. I did develop neuropathy in both my hands and my feet, and my organs were being affected too—I am still working on that. However, my body was feeling a LOT of pain, especially in the kidney and rib areas so I asked my PC,my Oncologist and my Rhuemy if I could get back on the Remicade, and I was told no to the Remicade, but I could try another Biologic that was different. They put me first of all on a Cosentyx sample and it was helping some but not enough. Plus, my insurance wouldn’t cover it because it was an at home shot instead of a clinical applied medicine. Then I got approval from all my doctors and from my insurance company to try Simpony Aria infusion, as it is given in a clinical infusion situation. I was feeling much better in 24 hrs and has been working well for me since. I am turning 69 tomorrow and I will never again complain about my age. I will be grateful for every birthday, and every day I can enjoy being a grandma to my noisy, messy, funny and fun little grands. Celebrate everyday! Be your own advocate and ask for what you feel you need. I have been blessed that my doctors have all consented to work together and continually work together at getting and giving updates that they share. I hope and wish for you all to have that and advocate for that. It was good to get back on and share. Laurie


Moderated by  Megan, WendyR 

Link Copied to Clipboard
Who's Online Now
0 members (), 137 guests, and 79 robots.
Key: Admin, Global Mod, Mod
Recent Posts
Pain Relief Back/Neck technique
by L33ZN - 01/25/25 09:07 PM
AS Study - Feedback on Your Privacy Preferences
by CitizenScientist - 01/19/25 01:09 PM
last visit to Dr. after 33 years!
by rranta - 01/12/25 10:27 PM
My interview with Dr. Zampieron
by DragonSlayer - 12/27/24 10:39 AM
Shawshank Redemption
by stevec - 10/25/24 10:28 PM
Stopping Biologic for Cancer
by Cindy - 06/07/23 10:56 AM
Popular Topics(Views)
3,460,187 hmmm
1,365,781 OMG!!!!
751,915 PARTY TIME!
Powered by UBB.threads™ PHP Forum Software 7.7.5
(Release build 20201027)
Responsive Width:

PHP: 5.5.38 Page Time: 0.019s Queries: 21 (0.007s) Memory: 3.1460 MB (Peak: 3.5247 MB) Data Comp: Zlib Server Time: 2025-02-10 00:25:49 UTC
Valid HTML 5 and Valid CSS