Jg_miller Posted July 29, 2016 Posted July 29, 2016 I was diagnosed with stage 4 non small cell lung cancer 1/13/16. I had 10 sessions of radiation for cancer in my hips and 6 sessions of taxol/carbo. The hips are healing and the pain is minimal. CT scan showed the tumor on my lung and the tumor on my sternum had both shrunk. My oncologist was very happy with the progress. I just had my 4th infusion of Opdivo. After the next session, I will have my 1st CT scan since starting the Opdivo. No side effects from the Opdivo, but after my last treatment of the platinum base, I have developed peripheral neuropathy in my feet and taking gabapentin. I have two questions: Anybody else on Opdivo and if you are, how is it going? Is there any other relief/cure for peripheral neuopathy besides gabapentin?
marc9338 Posted August 1, 2016 Posted August 1, 2016 Not taking Opidivo, but sounds like things are moving in the right direction. I am Stage 4, with ALK mutation. Mine had also spread to the hips (pelvic, femur, lower spine). I am taking oral chemo only. All the aching in my hip area had pretty much gone away. I have my next scan in 2 weeks and believing there is going to be BIG improvements. Hope you stay the course and continue to improve. I'll be praying for you. Marc
Jg_miller Posted August 1, 2016 Author Posted August 1, 2016 Thank you Marc for the encouragement. I will keep you in my prayers, also.
Jg_miller Posted August 2, 2016 Author Posted August 2, 2016 Thank you for your reply. I would really like to correspond with others taking Opdivo. If you could help me make that connection, that would be great.
crousemelissa Posted August 2, 2016 Posted August 2, 2016 Hi JG, I've been on Opdivo since February and am tolerating it fairly well. (Just some muscle and joint aches and pains and fatigue) As far as neuropathy is concerned, I do have residual neuropathy from the platinum drugs I received 11 years ago. I do not take anything for it.
Jg_miller Posted August 2, 2016 Author Posted August 2, 2016 Thank you for your reply. What have your scans shown? Any improvement? My 1st scan is next week and I know the 1st one will not show any improvement. Just curious about your scans.
DonS Posted August 2, 2016 Posted August 2, 2016 I have been on Opdivo for 13 infusions the only side affect is hypothyroidism so I started levothyroxine. I have nueropathy from taxol six plus years ago. I wear compression socks and just started cannabus tincture that seems to help. It is approved for medical use in California Good luck Don
Jg_miller Posted August 2, 2016 Author Posted August 2, 2016 Thank you for your reply and info. Good luck to you, also. Have you had improved scans?
sjwhitlock Posted August 2, 2016 Posted August 2, 2016 Hi JG. I have been Opvido since April. I had scans about 3 months after I started that showed tremendous improvement. It is true that the first scans aren't always easy to interpret but I believe that unless there has been frank progression, people usually stay the course for another 3 months or so. I've had no side effects except for my thyroid not working very well. I've been on thyroid medication for a couple of months and am having no symptoms with that. I do have mild neuropathy in my hands and feet from cisplatin I took almost 6 years ago. It doesn't bother me enough to take anything for it. I wish you well on the journey. Sara
Jg_miller Posted August 2, 2016 Author Posted August 2, 2016 Thank you for your reply. Glad to hear about your Opdivo results. Gives me encouragement. Stay strong and battle on!
gdlemaire Posted August 6, 2016 Posted August 6, 2016 Hello Jg_Miller, I haven't got much more to add to the notes above, please know that there are several people on our group that have had very impressive results on Opdivo/Keytruda - they are 2 very similar immunotherapy drugs. Like Melissa Crouse, my reaction to Opdivo (I was on it for 5 months) is just like hers.... (some muscle and joint aches and pains and fatigue). Regrettably, Opdivo didn't work for me and when there was some progression of my LC, I was taken off Opdivo. There are many new, and different types of immunotherapy drugs in the pipeline, and like Katie B says, we just have to hang in there for the next best discovery. Good luck to you!
Jg_miller Posted August 6, 2016 Author Posted August 6, 2016 Thank you for your reply. I hope only the best for you. Your encouragement was appreciated. With God in my life, I will battle on!
LiveWithCancer Posted August 8, 2016 Posted August 8, 2016 HI there, The only question I can answer is about Opdivo. I started getting Opdivo through a clinical trial in 7/2013. I will be getting my 70+ infusion today (I lose track of how many biweekly infusions I have had!). The only side effect I have had is a thyroid that quit working properly. It has been easy to control with a daily medication. Unlike many, I have no aches and pains or rashes. I will be fatigued the day of and the following day after an infusion. I am not so tired, however, that I can't make myself do whatever I really want to do. Some people apparently have diarrhea. I haven't had that either. Good luck!
Jg_miller Posted August 8, 2016 Author Posted August 8, 2016 Thanks for your reply. I am receiving my 5th infusion as I type this. Have a great day!
Spagano5 Posted January 6, 2017 Posted January 6, 2017 KatieB my mother had her first keytruda infusion this week. She's stage 4 NSCLC, adeno, no mutations. pdl =80% can you help me connect to other keytruda patients? let me know how best to do that thank u
Jg_miller Posted January 6, 2017 Author Posted January 6, 2017 Hi KatieB.... I was diagnosed with stage 4 non small cell lung cancer 1/13/16. I had 10 sessions of radiation for cancer in my hips and 6 sessions of taxol/carbo. The hips are healing and the pain is minimal. CT scan showed the tumor on my lung and the tumor on my sternum had both shrunk. My oncologist was very happy with the progress. I started Opdivo in June. All scans have showed no new growth and no new cancer. The side effects are minimal. Overall muscle aches at times and some fatigue, but I can live with these effects. After my last treatment of the platinum base chemo, I developed peripheral neuropathy in my feet and taking gabapentin for that side effect. Jennifer
Sue1147 Posted February 10, 2017 Posted February 10, 2017 My 38 yrs old daughter was diagnosed with stage 3B NSCLC in mid. January! She also has a very small Mets in her brain! Today we found out that she tests positive for 2 of the gene markers! The plan of treatment her doctor recommended is stereotypical radiation for the brain Mets! Then to start treatment with Opdiva! One tablet a day with close monitoring! She is otherwise healthy! She has no outer symptoms! What are your opinions for using this drug as a first line treatment instead of chemo? We are excited about this and pray this is the right approach!
Tom Galli Posted February 10, 2017 Posted February 10, 2017 Sue, I didn't know Opdivo received FDA approval for first line treatment of NSCLC. Has she had conventional platinum based chemotherapy? Stay the course. Tom
ChrisB Posted March 14, 2017 Posted March 14, 2017 On 30/07/2016 at 1:28 AM, Jg_miller said: I was diagnosed with stage 4 non small cell lung cancer 1/13/16. I had 10 sessions of radiation for cancer in my hips and 6 sessions of taxol/carbo. The hips are healing and the pain is minimal. CT scan showed the tumor on my lung and the tumor on my sternum had both shrunk. My oncologist was very happy with the progress. I just had my 4th infusion of Opdivo. After the next session, I will have my 1st CT scan since starting the Opdivo. No side effects from the Opdivo, but after my last treatment of the platinum base, I have developed peripheral neuropathy in my feet and taking gabapentin. I have two questions: Anybody else on Opdivo and if you are, how is it going? Is there any other relief/cure for peripheral neuopathy besides gabapentin? I'm on Lyrica for neuropathy - think it's she same. I've a meeting next week to discuss Opdivo as an option. I was interested to hear of someone who has had this drug and what the side effects and outcome was
Jg_miller Posted March 14, 2017 Author Posted March 14, 2017 I have been on Opdivo since June 2016. Infusion every two weeks. Side effects: fatigue (doesn't keep me from doing what I want to do), muscle aches a few days after infusion. CT scans every 8 weeks. All have shown no new cancer and no new growth until the last scan. Showed a few miniscul new spots. Will recheck next scan (3 weeks).
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