Immunotherapy finished after 2 year limit

Has anyone got experience of life after immunotherapy treatment comes to an end. The treatment is limited to a maximum of 2 years by NICE. Partly due to the expense of these treatments and that patients may not derive any further benefit after that time. Im interested in how healthy you have been, have you had any late side effects in the months after. Are you confident that there is an enduring effect. Any replies mucn appreciated.

Ed

Parents
  • Hello Farmer-Ed,

                                  sorry to read you are now stepping into the unknown,Strange to think when we were younger we would see this as a challenge to be embraced, but as we get older the uncertainty does not seem so rewarding. Hopefully you will get some reassurance from those that have gone before.Meamwhile keep getting out on the farm which is hopefully not quite as wet and bottomless as is the case on my crofts,

    keep moving forward,

    David

  • Hello David

    Hope you've survived the winds, or been affected by the H5N5 virus outbreak in Ness and are able continue to work your croft. Hard work and the outdoor life enables us to keep cancer at bay. Finishing treatment is great I will not miss the 50 visits a year to the hospital. Also a bit daunting as the immunotherapy treatment has kept me quite well so far, will its effects keep on working? You are right about how we perceive risk and uncertainty as we age. As a carefree young man I worked on the huge wheat / sheep farms in Western Australia then left for a job in Darwin. I hitchhiked all the way not at all perturbed by the Darwin 4100 km sign just outside Perth. The saying, a journey of a thousand miles begins with a single step, came to mind. Now with less energy to deal with things if they go wrong less risks are taken, I remember my grandfather lamenting the loss of the boundless energy of his youth, I now understand. Doing paperwork today to satisfy HMRC, one of my sons is doing the physical stuff. Ive got a gate to mend tomorrow, (a new poor quality ready made one is £160). We are not waterlogged yet, after the worst drought ever recorded here, there are still patches of soil that are completely dry 10" down. Well be struggling to find enough daylight soon to get tasks done more especially where you live. All the best

    Ed

  • Hi Ed,  sounds like you had a great youth in Australia.  I backpacked alone in Africa for 8 months.  Saw the silverback gorillas, pygmies, got malaria, all kind of adventures.  I shudder to think of it now, far to old and like my comforts ha ha.  I hope the affects of immunotherapy keep working for you.  What do you farm on your crofts David?

    Lee x

  • Hello Lee,

                     nothing as exotic as Gorilla's ,although my ewes do a good impression of throwing their weight around at the feed troughs as they have had me on the floor twice in the past week. So we have hooligan Suffolk and Cheviot ewes along with some better behaved Herdwicks, Belted Galloways and Aberdeen angus cross cows, a tri coloured pony cob that pulls a four wheeled carriage and until laqst week a Clydesdale horse who at the age of 27 unfortunately had to be put to sleep as he went done and no longer had the strength to stand back up.

    We make all our round bale hay and haylage with our own equipment that is older than the horse,but it is still all going.Our land runs to edge of the Atlantic Ocean on the NW coast of Lewis,with our livestock and machinery sheds tucked in a natural depression 30 metres from the shore for protection, so plenty of fresh air, wind and rain, all delivered in copius amounts at times. One thing is for sure, no time to sit around looking for the next job, and never,ever boring.

    Hope this finds you well, and l am off now to replace some rusted out vented side cladding on my stock shed ready for the winter housing which hopefully being milder here by the sea ,will not come until around Christmas/New Year

    David

  • Hello Lee

    Good to hear from you, you certainly were adventurous in your youth by travelling around Africa solo, what a fantastic experience and what has contributed to your resilience in now dealing with cancer. I see that you are having treatment at the hospital and I hope it is going well. Ive finished immunotherapy but will still continue with Denosumab injections 6 weekly. A nurse has shown me how to do the injection and I will be able to self administer a pre-filled syringe at home, saving a trip to the hospital. It will be the original Xgeva one not the biosimilar Enwylma (Zentiva) currently used in hospital. I'm glad you managed to make your trip to Portugal. Like you I find sitting for long periods of time making travelling any distance difficult but I'm OK when walking or working, which most days I can do without painkillers. It is a nuisance this cancer getting in the way of life but like you, David and some other tough individual on this forum I'm going to keep kicking it down the road as long as I can. 

    Ed

Reply
  • Hello Lee

    Good to hear from you, you certainly were adventurous in your youth by travelling around Africa solo, what a fantastic experience and what has contributed to your resilience in now dealing with cancer. I see that you are having treatment at the hospital and I hope it is going well. Ive finished immunotherapy but will still continue with Denosumab injections 6 weekly. A nurse has shown me how to do the injection and I will be able to self administer a pre-filled syringe at home, saving a trip to the hospital. It will be the original Xgeva one not the biosimilar Enwylma (Zentiva) currently used in hospital. I'm glad you managed to make your trip to Portugal. Like you I find sitting for long periods of time making travelling any distance difficult but I'm OK when walking or working, which most days I can do without painkillers. It is a nuisance this cancer getting in the way of life but like you, David and some other tough individual on this forum I'm going to keep kicking it down the road as long as I can. 

    Ed

Children
No Data