October 2020
Brogsie, Not the best news but sounds like there is a chance of further treatment. I guess you are in for a painful few weeks waiting to get further news. I’m sure a lot of people will be willing a positive outcome for you. Remembering those conversations with my doctor where all you hear is “it’s not good news I’m afraid”. In a movie or TV show that person in in real trouble, but as most people on here will know the chances are you will have that conversation several times. Despite the heart issue I find myself in a pretty good place at the moment. Medication is at the right level so I’m getting back to a reasonable level of fitness. Hopefully I’ll be ready for the next round whenever that might come. Good luck for some positive news.
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October 2020
1 Kudo
Hello Brogsie, Sorry for the delay in getting back to you, I guess it’s scan day today and hopefully you will get the results soon. To answer your question, my treatment was suspended last December (2019) after only six infusions. Following several scans this year there is still no active disease. When the day comes that something does show up my oncologist has advised that there are other biological treatments available. I did not ask for details but do see other drug names used on another forum. I hope your oncologist can give you similar reassurance if necessary. You may have heard of pseudoprogression where the tumor can appear to increase in size due to an immune response. Not something I have experienced but my doctors were certainly looking out for it after CT scans. I can relate to the joint pain you describe, after ten month I still experience aches in my lower legs and rashes that I did not have before immunotherapy. This year’s focus has been heart related, after a bought of myocarditis (inflammation of the heart muscle). Its was discovered that I was in heart failure due to damage from the cancer treatment, radiotherapy or immunotherapy. I can only imagine how frustrated you are after doing so well. Once on this rollercoaster the odd straight slow section is much appreciated. I wish I had more practical knowledge to share, all I can do is in some way relate to your situation and look forward to hearing how you get on. Good luck!
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March 2020
5 Kudos
This is a follow up to the post I submitted between July and October last year. Hope that one proved useful to those contemplating immunotherapy. Following the four rounds of Nivolumab and Ipilimuab I had six weeks off. The side effects were quite minor and wore off pretty quickly. (Skin rash, muscle aches, head aches, fatigue and general cold/flu symptoms). First round of Nivolumab only was administered on 11 of November. I was a bit surprised at how the side effects returned so quickly. Although as mentioned in my previous post they wore off after a few days. Second round was on the 9 of December, once again the side effects returned and were quite intense. This time my breathing became a bit laboured and I had aches either side of my ribs. This time the issue did not improve, on the 25th of December the discomfort in my ribs became a crushing pain. I couldn’t breath so presented to the hospital emergency department. CT scans and a chest X-ray showed swelling but little else. Two days later I had a consult with my oncologist, the issue was diagnosed as pneumonitis (inflammation in the lungs). I was prescribed steroids which had an immediate effect, all the minor irritations, but especially the lung issue settled down. A week later I had another consult, it was decided to suspend the treatment and ween off the steroids. The oncologist felt my body had taken all the immunotherapy it could handle for now. More importantly it had done its job, the CT scan taken in emergency revealed a complete reduction of the cancer being treated in my right lung. I am writing this having had a follow up CT and consult this week, March 2020. After being diagnosed three years ago, a total left nephrectomy, two rounds of radiotherapy on lymph nodes in my chest and only six months of immunotherapy for metastasis in the right lung I now have “no apparent disease”. I am fully aware that this new form of therapy is not for everyone. I will continue to take medication for reduced thyroid function. I have a rash under my arm pits and still have muscle aches. All can be treated easily and hopefully are temporary. Next scan is in two months, I will remain on close active surveillance. Apparently there are still various treatment options available to me if, or more likely when the cancer fancies another round. Once again, hope this is useful. Good luck.
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November 2019
1 Kudo
Sally Moon - Living With Cancer
My family has just lost a great friend following a long fight with cancer. She spent the prime of her life just keeping ahead of the disease. Following her career, the ability to have a family and enjoying stable relationships were made next to impossible, but she endured. During more than a decade of coming to terms with the hand that life dealt her Sally committed her thoughts to paper, earlier this year she shared some of these thoughts on youtube.
I have shared the link and hope you can find a common bond and comfort in her words. For me at least she has been an inspiration and truly encouraged me to do my best, keeping ahead of this life changing, and ultimately ending test.
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November 2019
2 Kudos
Sally Moon - Living With Cancer https://youtu.be/7g1FoHqXPWk My family has just lost a great friend following a long fight with cancer. She spent the prime of her life just keeping ahead of the disease. Following her career, the ability to have a family and enjoying stable relationships were made next to impossible, but she endured. During more than a decade of coming to terms with the hand that life dealt her Sally committed her thoughts to paper, earlier this year she shared some of these thoughts on youtube. I have shared the link and hope you can find a common bond and comfort in her words. For me at least she has been an inspiration and truly encouraged me to do my best, keeping ahead of this life changing, and ultimately ending test.
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November 2019
Hi CiennaR for your good wishes, I am just finishing a six week break from treatment culminating in a couple of weeks off work and some trips away. The timing was great as I've been feeling so well and energy levels have been good. Back to it on Monday with the first single dose treatment, Nivolumab only, every two weeks. My oncologist is confident this will be fairly short term as the results so far have been so good. Glad that you are also enjoying similar positive results as far as the cancer goes, like you said the benefits of being on this treatment out weigh the possible damage it can do. Having said that I have had it pretty easy, I'm sorry that your vision issues have not resolved following discontinuation of the treatment. Hope you get some good news from the specialist. It sounds like the care you are receiving is second to none. Take care and wishing you good outcomes.
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November 2019
Hi CiennaR, thanks for the update. Glad to hear that the cancer treatment has had such good results, fingers crossed your next pet scan shows continued success. Disappointing though that you are having to endure such serious vision issues, hopefully the specialist you are about to see can give you further hope of a positive outcome. Your comments on this forum will hopefully help others receiving this form of immunotherapy of what to be aware of as far as side effects go. I have been given every opportunity to discuss any concerns as they arise. The care we are offered really is second to none. Good luck for continued good results and thanks again for keeping in touch.
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September 2019
1 Kudo
Hi, your post takes me back a couple of years to when I was diagnosed with RCC Thomthom2913. I can clearly remember being terrified and that my world had just fallen apart. I had been living with the cancer for quite a long time so it was far more advanced, the whole kidney, the Ureter, part of the bladder and a section of the renal vein were removed. I mention this as the operation was quite complex. Hard work for the surgeon, but relatively easy for me, recovery was pretty quick. Three nights in hospital, I took a month off work and returned to light duties for a couple of weeks. I was back to work full time after about six weeks. There was some minor discomfort when laying down to sleep, but otherwise during the day I exercised and worked as though nothing had happened. I've had further experience with cancer since then but the original digagnosis was made at a much later stage. A friend has been though a similar situation to yours this year, they are a couple of decades older but have still recovered very well. Recent scans had been clear and oncologists seems to feel that will contiune. Wishing you good luck with your surgery and a quick recovery.
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August 2019
Hi CiennaR, early days for me on this dual therapy but from what I understand it has quite a good success rate. Im glad it’s worked for you but finding the balance between extending our lives and risking the damage it can do isn’t easy. Although I must admit taking what’s on offer to keep me going. From what I have read and the information Rick sent you vision problems are not completely unheard of. Most of these problems seem to be caused by inflammation and stopping treatment is the preferred response. Hope you let us know how you get on, good luck. 🤞
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August 2019
Hello CiennaR, wish I could offer some practical advice. I’m very new to this form of treatment but was advised that vision problems were a noted side effect. My oncologist is keen to be made aware of any concerns,and is quite open about the limited knowledge of how these drugs can cause minor or major issues. Hopefully your oncologist will have a rethink or seek advice. Your post is much appreciated as it will keep people like me aware of future potential issues. Good luck and hoping you have a positive outcome.
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