Good morning,
My husband was diagnosed in June with stage 4 kidney cancer that had spread to his spine and pelvis and also a separate lung cancer. He was started on immunotherapy, ipilimumab and nivolumab, he had two treatments with of the two drugs but unfortunately developed some side effects. He had a horrid chest infection, then developed a type of arthritis which gave him horrendous joint pain, his liver function was affected and also his thyroid. His immunotherapy was stopped and he was given steroids which helped massively. When things had settled down the doctors decided he could start the immunotherapy again but is now only on one drug, the ipilimumab. He has also had two infusions of the one drug and also a bone strengthening drug, Zometa and all appeared fine until he got diarrhoea quite badly. We thought this was a one off but on Friday he had a huge attack of diarrhoea, vomiting and stomach cramps. He was advised to come to our local hospital and has now been diagnosed with Colitis, again caused by the immunotherapy. The doctor has now said they think the immunotherapy will have to stop as it’s triggering these potentially dangerous side effects. My question is where do we go from here. I think we had both really pinned our hopes on the immunotherapy and feel that we have no idea what they will do now. The immunotherapy had been working all the tumours had shrunk so it’s just devastating that this has to now be stopped. My husband has been amazingly strong through all of this but now he is starting to wonder what next as it really seems to be two steps forward, three back. We had even began to talk about him going back to work as he felt so well.
I’m sure this is the same for many people but we really just need a break and some positivity as we are both struggling.
Thank you x
Hi Bob , I will be starting immunotherapy shortly they won’t be removing it as of yet . Seems crazy they removed yours from the information I know .im glad they did mind :) yours was huge . I don’t have any effects bar side pain atm which is what made me go to doctors but its very bearable . I will be starting a immuno doublet ipi/nivo hopefully it serves me well . Thanks for the message I appreciate it
Hi I hope your husband is feeling better I just wanted to add my experience of treatment after immunotherapy.
I started with 6 months of immunotherapy and it worked for a while but after the 6 month scan my cancer had increased in both lungs and spread to my spine I was taken off immunotherapy and started a chemo oral tablet treatment of cabozentinb ( which was a trial drug at the time) some bad side effects sickness diorerrea and mouth ulcers to name a few but the tablets worked I became stable for 6 months and tumor size decreased in lungs but then I think my body got used to the drug and my next scan showed increases and also spread to my liver .
I stopped that treatment and have been on a combination oral tablets of Lenvatinib and Evrolimus for the past 12 months mixed results some scans show stable some show slight increase in tumours. But the overall point I wanted to say is there are lots of medicines in the hospital cabinets I'm still here two years after immunotherapy so don't give up ,don't think what's next too much just go with it, make every day a good memory and keep smiling any questions let me know all the best Ry
Hello, I started an immunotherapy treatment last November 2022, Lenvatinib 20 mg daily and Pembrolizumab infusion every 6 weeks. Two weeks later, because of the crash of the medication into the disease, kidney cancer stage 4, radical left nephrectomy, metastasis in lungs and trachea, the pleural effusion filled up my right lung and needed to be drained, 2 L. My treatment has needed to be stopped three times so far, due to the side effects. Persistent cough, constipation, etccc, my joints pain took me almost to be unable to walk, nerve system inflamed. The doctors reduced my Lenvatinib dosis and because of my last two scans showed a worsening my treatment will probably changed. Wrapping up, there’re different combinations, different fight lines. Once the cells adapt to the meds, the treatment needs to be changed, new drugs to ‘turn the cells crazy’. Just trust on the doctors, and God of you are in. All the Best
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