I was diagnosed with stage 4 lung cancer, metastasised to ribs, hip and liver in January this year after having CLL for nine years.
The targeted drug, Crizotinib, isn’t working so the cancer is now in my pelvis and back as well as the foot of the spine. I’ve to get 5 sessions of radiotherapy there because of the pain and I’m practically bedbound.
A discussion is being held about my case today as it is unusual, with any further treatment discussed. Immunotherapy was mentioned but the CLL probably knocks that one on on the head?
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Jabb-UK
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I can't comment on your case, but I share metasticised secondary cancer to the liver and lung... I was treated one round for it and it included an immunotherapy... bevacizumab.
I was also on Zydelig (idelalisib) for CLL and there were no direct conflicts, however the drugs started a chain reaction of invassive fungal infection to the lungs and sinuses, ears etc., C. diff, bacterial pneumonia, and massive edema.... primarry due to a highly previously damaged immune system...
In retrospect, I think while I was quite damaged by this treatment for adenocarcinoma, it did weaken the cancer for the past 6 months, primary in my lungs and liver...
Now I'm off all treatment, save for antifungals to stop brain involvement... so I'm living out my life...
I hope your discussions are positive... I'm of the 'you need to break a few eggs to make an omelette' camp... I also have had radiotherapy to my L2 vertebrae and it made me very ill, but it did improve in time.
Exactly, and you willl 😃, sometimes knowing what others go through, helps us focus.
Unusual... each case is different, but certainly this is one path in CLL. I have known quite a few patients that have similar, but different situations.
I have also been cured of a Richter's transformation... but it was 6 years ago and is water under the bridge at this point.
I am sorry you are dealing with that. I hope your fighting spirit and the work of good doctors gets you through this tough time. Sending all good vibes your way
I’m back in the CLL Community after skulking in the lung cancer one for a while.
I’ll probably find out more tomorrow when I go for the planning meeting (got the phone call from the radiotherapy department this afternoon).
Just thinking about what else we have to cancel - a trip at the end of next week to Cardiff and our caravan at the Malverns probably. Hey ho. I’ll wait to see what tomorrow brings.
Hopefully things will be clearer after you've had the planning meeting today. Let us know how it goes - maybe you'll still be able to go on some of your trips, or plan some other nice things to look forward to...
My long message on your previous post disappeared into the webs black hole. My partner whose prostate cancer had metastasied into numerous bones was experiencing horrendous pain in coccyx and sacrum. He had a deeper than normal bone radiotherapy that eased the pain considerably, no doubt it will come back but it has beaten back the pain for now. So hope you have similar relief.
No easy journey, but with tears and hope we struggle on through it. He had a bone scan last week and we await results.
I wish you the strength and support, not forgetting hope that the future will be easier for you.
I am sorry you lost your previous post - so frustrating! (and I would to have liked to have read it)
Thank you for letting me know about the good results of radiotherapy for your husband.
(Now the rest of this message disappeared twice!)
To continue, I was feeling more concerned about having the radiotherapy this time because it was at the base of the spine and so much could go wrong.
The radiotherapy worked fine before, on ribs and hip, but of course I have that reaction - which is unusual. On the first, third and fifth burst, I went 'into shock' (but they called it 'puo'). Did it again when I was an outpatient getting the left rib done so at least my husband could see it. This time I'm not going home until after the two hours it usually takes!
Thank you again for getting in touch and please let me know how it goes with your husband.
Joan
I wish there was something I could think of to tell you. I am hoping and will be praying that the doctors find something that will help you and that they can relieve your pain so that you might be able to get out of bed for a bit. Please let us know how you're doing.
Feeling better today, i.e. less sore and wondered why. Yes, the 'nerve pain' drug, pregabalin must be working but also because I haven't been out and about/to the hospital.
I like to think I am always optimistic and positive though Monday was a low point. Yesterday, following the planning meeting when I was marked up for the radiotherapy starting next Monday, I had a meeting with my specialist and she was able to tell me that it's okay for me to go on the Ceritinib! Hurray!
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