My wife's immunotherapy.

  • 8 replies
  • 49 subscribers
  • 488 views

Hi. It's been a while since I've posted anything on this forum so I thought I'd add our experiences to share.

My wife was diagnosed with kidney cancer in September 2022 having suffered increasing pain in her right arm. À scan revealed a large tumour in the upper arm and the fact that the humerus bone was broken. Further scans revealed tumours in her lung, spine and kidney. She very quickly had surgery to repair her arm and a biopsy identified that kidney cancer was the source of the tumours. Following the surgery she had one course of radiotherapy on her arm. She now has full use of her arm with no pain

Quite quickly Lorraine embarked on the immunotherapy journey. The first four monthly courses were to be twin drug infusions then dropping to single drug infusion. Early on she suffered no side effects and we lived a full life together. Following her third session we went abroad but after only two days away she started suffering from extreme diarrhoea. I phoned the 24 hour helpline at her oncology centre and was advised that the best place for her was at their hospital but that she may need admission to the nearest hospial. We managed to get a flight back for the following day and got her to her oncology unit which is in Cheltenham. She was immediately attended to and admitted. She was suffering from colitis as a side effect of the immunotherapy. She was treated in hospital for twelve days and the colitis was resolved. She was placed on high doses of steroids to reduce the inflamation of her colon and immunotherapy was paused. A CT scan showed that the kidney and lung tumours had reduced in size quite dramatically and the bone tumours were stable.she returned to feeling well.

After having reduced the steroids immunotherapy recommenced but with the single drug infusion. But within days she was struggling to breath, had a fever and chest pain. She was immediately re-admitted to the hospital and diagnosed with pneumonitis which is a general lung inflamation. More high dose steroids were administered and again the problem was resolved and after a week she returned home.

This time she was weaned off the steroids very slowly and returned to good health. Again immunotherapy was paused. 

A couple of months later immunotherapy was restarted and for five sessions there were no further serious complications. She had periods when her appetite fell away and she lost a lot of weight but they passed. Generally though Lorraine felt pretty well. A CT scan showed the the kidney tumour and lung tumour had very slightly increased in size but the bone tumours remained unchanged and there were no new tumours.

In November 2023 we were once again abroad when she was woken early one morning with intense pain in the location of her kidney tumour with associated vomiting. No amount of pain killers helped and so I again called the oncology centre helpline and immediately following the conversation booked a flight home. Later that day we were at the hospital. Lorraine was examined and given morphine for the pain and we we came home. The morphine worked.a week later, following a routine blood test she was called into the hospital as her liver was malfunctioning and she showed visible signs of jaundice. She was admitted and scans and further tests showed that the kidney tumour was bleeding and that her bile duct was very inflamed which was causing the liver problems. Blood clotting drugs resolved the bleeding and steroids were again administered to reduce the bile duct inflamation. A CT scan showed that the kidney tumour had again shrunk and the other tumours were stable.

Lorraine is back home and slowly reducing the steroids with a view to restarting immunotherapy. 

It is unfortunate that Lorraine has suffered three bouts of pretty serious side effects of her immunotherapy and we are informed that this is unusual. Between those issues she has felt very well and our quality of life has been unimpeded. The immunotherapy is doing it's job. 

The care and attention that she has received,  and continues to receive from her medical team and staff at Cheltenham oncology centre is nothing short of outstanding. 

Our lives continue in fine form taking each day as a pleasure. 

When Lorraine was first diagnosed the bottom fell out of our world. Fear and trepidation flooded in. However talking to her medical team and learning more about her treatment, and developments in treatment and research has enabled us to come to terms with the situation. We have learned to take nothng about our lives for granted and to take pleasure from every aspect of life. Our love for each other has become stronger and deeper as has our love of every day.

We don't dwell to much on the future but remain positive and optimistic. Her treatment is maintaining a quality of life that a few years ago would not have been possible. Her care is truly outstanding. 

I, we, owe huge gratitude to all the researchers doctors and scientists who are forging ahead in their wonderful work.

Forgive me if you find this posting lengthy.

  • Have hope.