Starting treatment soon

Hi R1k,

Welcome to the kidney community, I myself had my left kidney and spleen removed in December 2019, I was waiting to hear about my right kidney which had cancer in the bottom of it, well as you know Covid came along and by the the time I went for my appointment it had spread to my lungs, I went on to immunotherapy which was infusion based, the infusion did shrinkage in the tumours in my lungs but, not the kidney cancer so I am on chemo tablets which did shrink the kidney cancer and my last three scans all has been stable, I have had some side affects but I have been very lucky all bearable, good luck on your treatment, I hope you will be back to work soon.

Hi thankyou 

Good to hear your last scans have been stable,iv been told il be on treatment for my lungs forever, is that the same for you ?

Hi R1k,

No I am on the chemo tablet for my kidney cancer, the tumours in my lungs have gone they are not treating me for them, I also have a friend who had his right kidney removed 16 years ago, he also had marks or spots on his other kidney and lungs, but once the kidney was removed they went too, he must have a very affective immune system, I have not heard that before about treatment forever but someone else might be able to tell you, the treatment nowadays is coming on leaps and bounds so try not to worry, we are all in the same boat on this group and there will be someone who will be able to give you more information, stray safe and take care.

I must admit not that I know anything about it but when I was told I'd be on treatment forever because the cancer on my lungs was incurable I was really surprised and shocked . But apparently incurable and terminal are not the same thing .was very confusing 

I've been incurable for 10 years now following the removal of my Kidney in 2011 when there was already spread to my bones. I had tablets until 2013 which worked very well but I had bad side effects so they were stopped but because I had responded so well I just went on watch and wait for more spread then I would recommence treatment. I have just started immunotherapy in July this year so that was a good length of time without treatment. I know I have been extremely lucky but someone has to be and treatments improve all the time so the difference between incurable and terminal is very different indeed

Hi thankyou for your reply. I must admit when I was told its incurable it made me feel my life was over but then talking with the macmillan nurse it was explained alot better. I'm glad your doing OK in general. I am getting anxious about how il be on the chemo with side affects and hopefully being able to still work 

Hi R1K  ,  my husband was diagnosed just over 2yrs ago , he's been on treatment since , he couldn't have his kidney removed . When he was on immunotherapy (ipi/nivo) he felt good but couldn't have worked full-time due to fatigue , he's now on a different treatment and hasn't been able to work due to side effects.  It really depends on your job and your employer, if your job is physical , can you sit down if feeling tired/sore and are your employers flexible and supportive as thetes lots and lots of appointments.  You may feel great and find easy to work , you're younger so might cope much better and you may be able to work around your appointments.  My husband's employer has been fab and very supportive , hopefully yours will be too but don't push yourself to hard to quickly , you've been through a lot x

Morning 

Firstly hope your husband is doing well.yer my works have been great so far , my hob is more mentally tiring than physical but I'm just hoping I can manage full time , I know I'm going to push myself as much as possible to work full time .I do get told to go slower with everything but that's just not me .Still waiting for an appointment to see what treatment I'm having which feels like it's taking forever but it probably isn't really 

Hi R1k,

You might be fine on your treatment as you are younger you might be able to go to work, can you work from home sometimes, I am lucky because I am retired so don’t have that worry, I think once they tell you what treatment you will have than you might be able to work around your treatment, I think the worst about having kidney and lung cancer is you are always waiting.

Yer you are right all the waiting is so hard.im currently waiting for the doctors to give me a letter to say I'm fit to work again from surgery as my work have said I can't go back until I have that .