JuneK Posted August 19, 2022 Share Posted August 19, 2022 I had my 2nd chemo treatment yesterday. It didn't go quite as well as the first but thankfully everything turned out OK. About 10 minutes into the Opdivo I started having severe lower back pain. It went from nothing to very bad in about 20 seconds! They stopped the drip immediately, then gave me an injection of Benadryl and a big dose of more steroids of some kind, I forget the name. The pain stopped almost immediately. They called the oncologist to see if treatment should continue (he's usually there but just had a baby so had a fill-in today & she wanted to check with him). He wanted to try again ("challenge it" is how they put it) and I was glad of that. I didn't want to have to give up on this drug so soon! So they waited another 30 minutes and started the infusion again with a reduced drip rate. Everyone held their breath to see if the pain returned, but it did not and I did fine. Everything went smoothly after that. What a relief! They said from now on they would start with the Benadryl & use the slower drip rate. It still worries me a bit because the hope was to be on the immunotherapy (Opdivo) for a long time. I wonder if since I already had an issue are there more likely to be problems in the future? Has anyone else has had an experience with this? I've also noticed most people on here talk about Keytruda or Imfizi when given immunotherapy. Makes me wonder why they are using a different one for me. Future questions for the oncologist I guess. I do remember him talking about some recent study when we first went over my treatment plan. Best to all, June Rosie77, Tom Galli and Justin1970 3 Link to comment Share on other sites More sharing options...
Rosie77 Posted September 19, 2022 Share Posted September 19, 2022 Hi June! I’m Rosie, diagnosed with stage 3 squamous cell NSCLC. My oncologist suggested Opdivo and Yervoy for my specific cancer because the cells that make up my tumors are similar to the ones found in melanoma patients. Similar to your situation, I had my second infusion of Opdivo on Sept. 8th. Five minutes into the treatment, I also felt the sharp pain on my lower back. I had to request to pause the infusion. The nurse said this was unusual, she said maybe I just needed to adjust my position. She put a pillow behind me and continued my treatment. A few minutes in, and the pain returned, it made me curl on my seat. The doctor on the floor ordered a dose of steroid iv which helped. I decided to finish the treatment. I did some research and found out this was a common side effect from immunotherapy, particularly Opdivo. I found this on the Mayo Clinic site when I looked up Nivolumab (Opdivo) and back pain was first on the list of common side effects. For my next infusion on Sept. 29, my oncologist prescribed an IV of Benadryl before my treatment to prevent this. He did not want to give me steroids because it would affect the effectiveness of the immunotherapy. I hope your next infusion goes well, maybe they’ll give you the same pre-treatment to reduce any side effects. Hopefully our Opdivo treatments work well to rid us of this cancer, that the pain we felt was just a bump on the road to our healing/recovery. Justin1970, JuneK and Tom Galli 3 Link to comment Share on other sites More sharing options...
Justin1970 Posted September 19, 2022 Share Posted September 19, 2022 Hi june Sorry to hear you had a bad time with the chemotherapy I'm glad it got better quickly for you , I had a couple of bad moments while going through it last year but it did get easier, I wish you all the best and goodluck with everything Take care Justin x Izzy and JuneK 2 Link to comment Share on other sites More sharing options...
JuneK Posted September 25, 2022 Author Share Posted September 25, 2022 Hi Rosie! Yes, it sounds like we had almost the exact same Opdivo experience on our second infusions! I had no problems at all with the first one. Then I had my third treatment on Sept 8th. Even though they gave me both Benadryl and steroids up front, I still had the severe back pain about 10 minutes in. It was very upsetting, because I'm thinking "Now, what do we do?". So they stopped it and had a big consultation. The oncologist decided to move on to the Alimta & Carboplatin and then try the Opdivo again afterward. For some reason this worked and I was able to finish the Opdivo afterward with no more pain. But I was told that after two bad reactions it is sometimes recommended to stop that drug & try something else, possibly Keytruda. My next infusion is this Thursday the 29th (same as yours!). A nurse called last week and told me the oncologist decided he wants to try the Opdivo once again, but this time change the order & do it after the chemo drugs. I don't really understand how that would help, but maybe it's to give more time for the Benadryl and steroids to take effect? I'm pretty sure if I have the reaction again, they will discontinue the Opdivo. So now I am now getting quite stressed over this next treatment. If it doesn't work and I have to change to Keytruda, I worry that I might have a similar reaction to that one, too (since I assume the drugs work in a similar manner?). Since I'm not eligible for any targeted therapy drugs, I feel like these are my only hope! This is why I was so disappointed that I did not have one of the "good" mutations. Also, I had not ever heard that the steroids could have a negative effect on the immunotherapy. That is a little concerning, but I guess if it helps me to take it maybe it is worth it. I will have to ask about that at some point. I certainly hope the pre-treatment Benadryl works perfectly for you. I think it usually does, as they seemed a bit surprised that it didn't work for me. So you will most likely do fine, and I sincerely wish you the best of luck! Please let us know afterward how it goes. And please cross your fingers for me also . Best to all, June Justin1970 and Tom Galli 2 Link to comment Share on other sites More sharing options...
RosieSD Posted September 29, 2022 Share Posted September 29, 2022 Hi June, I’m messaging you right now from the cancer center. I started with the pretreatment of Benadryl then on to the Opdivo treatment. Sure enough, the back pain crept up again and they just gave me a dose of steroid. I’m waiting now before they restart the treatment. We’re both are sort of on the same boat, hoping this immunotherapy works. I’m not prescribed chemo meds though, my oncologist does recommend switching to chemo if the Opdivo-yervoy combo don’t work. My next scans are gonna be in November. I’m praying for you and your treatment today, that it all goes well. I hope these meds will help us through. ~ Rosie Justin1970 and Tom Galli 2 Link to comment Share on other sites More sharing options...
JuneK Posted September 30, 2022 Author Share Posted September 30, 2022 Hi Rosie, We are definitely in the same boat with this for sure! I do hope & pray that you had no further problems and were able to finish your treatment. The pain came back for me today also. But I was able to complete the infusion so we have agreed that for now we can "manage" it. We knew the last two times the pain hit me right at the 10 to 11 minute mark. So we were ready! As soon as I got the first twinges they stopped it immediately. The pain did increase a bit after stoppage, but not nearly as bad as the last two times when I waited until the pain was stronger to get them to stop it. So they monitored my vital signs while we waited for the pain to subside. They had already given me the steroids and Benadryl before starting. Once the pain was completely gone, they restarted the drip (with emergency kit at the ready just in case something worse happened). But just like the last two times, the pain never returned so I was able to finish it. I don't understand why it works this way, but it has been very consistent. So we have all agreed to continue doing it this way, being very careful, as long as we can. If more problems develop down the road he will switch to one of the other immunotherapy drugs and just hope I can tolerate one of those better. So for now I am feeling a little bit better about it. I have a scan on October 17th to determine if any of this is even working! There will be some high anxiety that week! I'm praying we both get through this Opdivo challenge with minimal further problems! Best to you, June RosieSD, Justin1970 and Tom Galli 3 Link to comment Share on other sites More sharing options...
RosieSD Posted October 11, 2022 Share Posted October 11, 2022 Hi June, I’m glad you were able to finish your treatment even with the back pain returning. I still have one more treatment of Opdivo on the 3rd week of October with scans scheduled for mid-November. I’m still a bit scared of the treatment knowing how painful it was, and I also had a weird feeling of things closing in and getting a bit dark. I’ll be holding on to hope that I’ll get through this next immunotherapy treatment with the Benadryl and small dose of steroid to treat the side effects. I’m hoping your scans prove your chemotherapy is effective. I’ve read of possible “pseudo-progression” when it comes to immunotherapy where some patients’ scans show tumors to increase in size even 4 months into their treatments, and after 2 more months ( 6 months into treatment) start to see their tumors shrink. I’m praying you’ll receive positive results especially since you’re already on a strong combination of chemotherapy. Hope there’s good news for us in the horizon, and even though we’ve both experienced some pain with Opdivo, that if it works out for both of us then all that pain is worth going through. Wishing you well, Rosie Justin1970 1 Link to comment Share on other sites More sharing options...
JuneK Posted October 16, 2022 Author Share Posted October 16, 2022 Hi Rosie, I'm sorry you are still having the pain also. Your "feeling of things closing in and getting dark" sounds very scary to me! I hope you told them about that. They've been stopping my treatment as soon as I get the first twinge of pain, so I haven't experienced anything like that. For some reason, when they wait a few minutes and start it back up, the pain has (so far) not returned. I don't understand it and it makes for a very stressful infusion, as you well know. I have my Pet scan tomorrow. I am really nervous about it. I have this dreaded feeling that nothing has been working! I'm trying my best to put it out of my mind, with limited success. Wishing you the best on your next Opdivo treatment. I hope you can get through it pain-free! Great to know you only have one more. If the Opdivo is helping me, my oncologist wants me to take it for 2 years if I can tolerate it. (I am stage 4, so I guess that's why) All the best, June Justin1970, RosieSD and Tom Galli 3 Link to comment Share on other sites More sharing options...
Strongmamaof3 Posted October 17, 2022 Share Posted October 17, 2022 I am reading through this thread because today my doctor recommended me to be on Opdivo/Yervoy after my first line of treatment didn’t show any success which also included keytruda. I’m nervous as I’m reading about this back pain because I had a severe allergic reaction to taxol at the beginning of my journey and it included bad back pain. Please keep posting about your journey with this. I am interested to see if it works. My doctor told me I had to wait 12 weeks after treatment to get rescanned. Is that what you did as well? I don’t have any common mutations as well and I’m at stage IV NSCLC, 35 years old and non smoker. Jena - Strongmamaof3 Tom Galli and Justin1970 2 Link to comment Share on other sites More sharing options...
JuneK Posted October 19, 2022 Author Share Posted October 19, 2022 Hi @Strongmamaof3 and welcome. I am a non smoker also. It's surprising to me how many of us non smokers with lung cancer there are! I'm so sorry your first line of treatment did not work. That really sucks. I would try not to be too worried about the Opdivo. My oncologist told me that Keytruda and Opdivo are similar in the way they work. So I'm guessing if you did OK with Keytruda, then hopefully you won't have any problems with the Opdivo. But of course, I'm not a doctor, so I really don't know. I have my next Opdivo treatment this Thursday. At this point I am resigned to the initial back pain. I'm just hoping our method of stopping & waiting it out continues to work. It does make for a stressful infusion though, because I'm always worrying the pain might start back up at any moment. I will definitely keep you posted as to how it goes. Hopefully Rosie will let us know how hers goes also. As for scans, I had my first PET scan yesterday (since treatment began). It was after completing 4 cycles of chemo & Opdivo. I forgot to ask how long it would be before I could do another one. Luckily, my lung tumor and the spot on my hip were both reduced in size, so I'm feeling very fortunate about that. I hope and pray your next phase of treatment finds success! Please keep us posted. Wishing you all the best. June Justin1970 and Tom Galli 2 Link to comment Share on other sites More sharing options...
Strongmamaof3 Posted October 19, 2022 Share Posted October 19, 2022 @JuneKthat seems like all good news! So happy to hear that your treatment seems to be working! May I ask what other chemo you are receiving with Opdivo? It’s interesting how many different combinations there are. Also, just wondering if your tumor had any mutations that you are aware of. Thanks for all your help. I know everyone’s cancer is different but hearing other stories sure gives me hope. I’m sure things will continue to go well for you! Hang in there! Tom Galli and Justin1970 2 Link to comment Share on other sites More sharing options...
JuneK Posted October 19, 2022 Author Share Posted October 19, 2022 @Strongmamaof3My chemo drugs were Carboplatin and Alimta. Yes, I don't know how they come up with all these different combos. I remember my oncologist referring to a specific study when he initially told me my treatment plan. I had a mutation for KRAS, but it was NOT the one they now have a targeted therapy for. There was another mutation I had never heard of, and I honestly can't remember the name right now. All I remember was that neither one was treatable with targeted drugs. Justin1970 and Tom Galli 2 Link to comment Share on other sites More sharing options...
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