Hey guys,
Ryan has been having I guess what we can call joint pain.. he’s been on a rapid taper. To me, the pain in his knee, back and shoulder were super alarming to me. (I expect the worst these days)
He woke up this morning and said his elbows and both shoulders are not in PAIN.. but discomfort.
Is this normal? I am a worry bee..
Thanks in advance ❤️
Dear ones
When in doubt, call the practice nurses. Their magic 8 ball is pretty helpful!
It don’t have enough experience yet with the difference between steroid bone pain and Mets bone pain. Sadly, I’m in the leaning curve since W had it in his sternum.
Hoping Chuck Norris is getting to work there with TIL cells
Missy
I think I called right after this post! They said it is common, and not to worry cause he just got a really good scan. I’m in the learning curve too missy, this is all new to me! I’m used to bone met pain. If this is truly steroid joint/bone pain then this will be a first for us too! (I would gladly except this learning experience)
How is Wayne i always talk about him and you and the journey you are going through with others. I hope you don’t mind. I think this TIL treatment is an incredible medical breakthrough. I know it has existed for a little while but I’ve only read about it, never knew someone going through it!
Kelly
Kelly,
I totally understand your concerns, I worry about everything. I don’t know if Ryans discomfort is anything to worry about. Is he able to go about his day some what normally, or is the discomfort prohibiting him? Can you slow down his tapering off the steroids? Mark is coming off his steroids as well, but we are taking it really slow. He just started 15mg today. We are hoping he can get to 10 mg. He does have aches and pains, but he still goes about his day pretty normally. I do believe some aches and pains are one of the many side effects of Keytruda/Opdivo. Ryan may also be more hyper sensitive to everything right now. Maybe try holding his steroid at the same mg or go up 5 mg and see if that makes a difference. Mark was supposed to go from 30 to 20 to 10 a week apart, I am having him go down in 5 mg increments and it seems to work better for him.
Praying for you both.🙏🏻
Michele
Yes, like after a hot shower his back feels better. So that makes me think the back is muscle related. He’s accepting the fact he’s getting old 😂 his oncologist has him going pretty fast because she wants him back on some kind of therapy. Which I’m all for unless it fries his liver as a whole. He goes about his day pretty well too! Just worry bee over here 😣 he’s been off treatment for a month ish. Scheduled to get his next infusion of ipi Nivo on Wednesday. He can continue treatment on 10mg I believe. Or from what I understand from his onco. I’m glad going down 5mg at a time is less shocking to mark! I think Ryan is going a little faster cause he’s 29 and his body is tolerating it. But we will see the blood work, and if it’s still elevated I’m sure they will either stay at 10 or put him up a little more. Here’s to hoping 🙏🏻
Looking forward to marks scans. I can’t wait to hear the update ❤️
Kelly,
Lol! Ryan is still young. Oh to be 29 again, and know what I know now. Sounds like Ryan is doing ok. Yes he can stay on 10 mg and get treatments. Mark did for several months. Praying things stay steady for Ryan which I just know they will.
Don’t worry about frying his liver. Marks liver was full of cancer, and he went to NED. This stuff is amazing. Have a wonderful weekend.
Thank you for your good thoughts. We are getting a little more anxious as Marks scans approach. He hasn’t had any treatment for almost 3 months. Hoping they have another treatment plan, or he can go back on the Opdivo, but they were saying a no on that, but maybe they can change their mind🙏🏻
Michele
Kelly,
I have some experience with steroids, taper and joint pain that I will relate here but know that different patients have different reactions so definitely call the nurses first.
My husband had been on high dose prednisone for a couple of weeks and was doing a rapid taper also, because his oncologist wanted him back on treatment asap, just like Ryan. 2 things happened: first the taper was definitely too fast and he had to go back on the medication, second he developed joint pain in his right knee that after a week became infected and septic, it had to be washed out. I am wondering until today what might have caused it because different professionals have different opinions about it; some say it is unrelated, just bad luck; some say it is probably immunotherapy related, but then they don't understand how the bacteria came in; and our home nurse said she sees a very reasonable number of septic joints after long term or high dose prednisone use. Well, don't know the science behind it, it probably was a little bit of everything. So I would definitely stay alert without being neurotic, keep in touch with the nurses and doctors and don't take no for an answer if the pain increases. Also remember that prednisone/steroids do seem to weaken the muscles, so that is definitely an option too. Keep exercising if he is up to it.
Praying all goes well,
Dorothe
Unfortunately, only scans will tell the tale. Remember, worry doesn’t change the outcome—which may be nothing when you have the scans. Wishing you the best.My son was in steroids too when on immunotherapy. So apparently, their use is quite common during flair ups.
New member — husband stage IV melanoma
My daughter has passed
