Hi everyone
I am 54 and have primary cancer in my lung and secondary cancer in my spine. Diagnosis was in June 2021.
I was having some radiofrequency treatment on my back and a few days later was in so much pain. Spoke to consultant who was surprised I was talking about so much pain and requested an MRI scan. At that time we were thining worse case scenario would be something had gone wrong with the radiofrequency treatment.
The MRI scan shocked everyone. It showed that I had cancer metastasis in my spine, deposits in my pelvic bone and that my L5 bone at the bottom of my spine had collapsed.
On admission to hospital I was told that if you have cancer in your bone, then it has most probably spread from somewhere else. They did a CT scan that confirmed I had primary cancer in my lung.
A couple of days later I started a 5 day course of radiotherapy for my back, although there was no cure, just to hopefully slow it down.
2 weeks later I was allowed home. What was our dining room had now become my bedroom, with a hospital bed; commode; wheelchair and zimmer frame.
My lung cancer also is incurable. I was told by my consultant that he would be 'hard pushed' to offer chemotherapy as he did not think my body would be strong enough.
I do not get any pain from my lung, but I do get a lot from my spine, especially at night, my lower back seems to seize up, and my legs.
Fortunately my cancer had a mutatation that allowed me to try targeted therapy. This comprises of a course of tablets, Osimertinib (Tagrisso). I have a blood test on the Friday pick up a fresh supply of 28 tablets. After that I go back and have a further blood test on the Friday and again, pick a fresh supply up on the Monday.
I started this treatment in August and fairly soon after that I was back in hospital because my feet and legs were swollen. I had a blood clot so was now on blood thinners. My blood sugar levels were really high so I was also a diabetic, having to inject insulin. 11 days later I was allowed home.
8 days later I am back in hospital with cellulitis in my other leg and problems with my breathing. Intravenous antibiotics and blood transfusions seemed to stop my cellulitus and my breathing got a lot better too. A further CT scan showed that part of my blood cloth has moved by my lung. 2 weeks later I was allowed home.
I have now been home for about 3 months which is great. I suffer from some side affects, mainly sickness now and then and being tired all the time.
I had a CT scan on Wednesday thorax, spine, pelvis. I have a consultant telephone call tomorrow to hopefully find out if anything is working. I had a call last Friday from oncology who said they want to do a full spine MRI to rule out any further cancer deposits in my spine. She said she wanted to give me a heads up so when the hospital rang then I would know what they were ringing for.
I am a bit confused as to why they didn't just tell me this tomorrow.
Anyway I will update after tomorrow where I should hopefully know more.
Thanks for reading.
Dear scraapi
Welcome to the forum and sorry to hear you have had such a rough time with everything. With regard to the MRI, which will provide more detailed imaging, it could be as simple as to give you as much notice as possible prior to your consultation tomorrow.
It sounds like you are being well looked after and the oncology team are being very thorough.
This link will take you to our booklet on bone metastases just published this year: roycastle.org/app/uploads/2...
You may have had a lot of information already, but if not we have many booklets from living with lung cancer and to the different treatments used:
roycastle.org/help-and-supp...
Hope you hear from others who have been through the same as yourself and you will find encouragement and support.
If you are interested we have online support groups through zoom and if you would like to register for these you can do so through this link: roycastle.org/help-and-supp...
Hope your symptoms are managed well and you have plenty support at home.
If you would like to discuss anything you can either email us at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600.
Kind regards
The Roy Castle Support Team
Thank you so much for all this information, I really appreciate it,Best wishes