Hi, been some time since I've posted on here. I've 4 secondary kidney cancers, spinal, lymph node,spleen and lung. Spinal one has always been the main problem, strereotactic radiotherapy has held it back for the last 2 years. However the last ct scan showed significant growth. So on Monday I had MRI and Tuesday a meeting with my specialist, well his registrar, who told me it had grown and had extended but had not penetrated my central nervous system yet. But he did explain the pains in my right leg and was surprised my left leg was ok . Told me to expect problem with my arms and hands ,which surprised me.
Does anyone with experience of all this any ideas what else is in waiting for me.
Can't have chemo as I've had 4 heart attacks and 2 lots of bypass surgery and my left kidney removed because of the original cancer.
Any advice would be appreciated thanks
Have they offered u more stereotactic radiotherapy-ie Cyberknife and or/gammaknife?
No when they gave me the original stereotactic radiotherapy they said I could only have it as a one off and could not be repeated. And up to now I've not been offered any radiotherapy at all
Hello again, I didn't realise ppl could only have stereotactic radiotherapy as a one off.
Depending on which type of kidney cancer you've got neither radio nor chemotherapy will work. I have clear cell carcinoma ( as do the majority with kidney cancer). My understanding is that ordinary radiotherapy and chemotherapy don't work for it., which is possibly why you've not been offered it.
I had my cyberknife treatment for a brain tumour in 2013 and was put on Pazopanib(Votrient.)The side effects of that were v similar to chemo but it acts on your cancer in a different way, stopping it from developing blood vessels in existing tumours and also developing new tumours. Basically stopping blood vessels from growing. I took 600mg daily.
I've been on a treatment break since 2016.
Dont' know if that's an option for you?
My cancer was clear cell carcinoma as well.
They've already told me that pazopanib is too aggressive for my heart condition and I'll probably end up worse after the treatment than my present situation. I'm getting the feeling that I'll have to live with what I have and settle for palliative care. But heyho I'm still fighting and have no intention to let it beat me
What a xxx re Pazopanib.
Be stubborn. It definitely seems to help. That's partly what keeps me going, plus a lot of ppl sending me prayers n positive thoughts
Hi EddyG69 ,
Sorry to hear about all the complications you are having. I too am on Pazopanib and I agree that it can have some significant side effects. I would not want to argue against medical advice but you might want to question the doctors about a couple of things.
When I was first prescribed the medication I was started on the maximum dose of 800mg daily and advised that if my body could not tolerate it then the dose would be reduced. I was fortunate that I tolerated it well and I remain on 800mg. I was advised that this was the standard way of it being administered. I have subsequently heard of patients being treated in the reverse way in that they have started on 200mg daily to see if this works and if not the dose has been increased gradually until they see a response or the side effects become unacceptable. Have they considered doing things this way around?
What is the concern about the impact upon your heart condition? One of the common side effects is an increase in blood pressure which I can understand would be a worry but they manage this in me with medication that reduces this? Is this something that they could do as my understanding was that once I came off the medication my blood pressure should return to what it was before. I was already on blood pressure tablets previously so it is unlikely to return to within normal parameters unless I lose weight and get fitter.
My apologies if you have already had this conversation with your oncologist as I know it is not possible to put all the details in a post on here and you may prefer not to.
Wishing you all the best,
Good idea Gragon. I was initially on 800ng then it was reduced to 600mg which I tolerated reasonably well, tho I did have to take BP meds. I've currently been on a treatment break for 3+ years.
Hi Gragon,thanks for your reply.
Initially when the bone cancer first started growing their plan was to to go with pazopanib but following an exchange with my cardiologist they decided this was no longer on the table. I'm assuming it's a combination of cardiac factors,leaking valve, arterial fibrillation, aneurysm to rv,probably the later being the alarm ringer!
I have a meeting with my oncologist on the 16th when they assure me they will have a plan to take forward or at least discuss.
My main concern is trying to find out what I have to look forward to if no treatment is possible ,on the basis of forewarned is forearmed.
Thinking of u Eddy
EddyG69 while Pazopanib might not be an option is it worth asking if they would consider Nivolumab for you?
Just wanted to say best of luck for tomorrow, could fortivida be an option (Tivozanib) rather than pazopanib maybe? X
Just wondering if the oncologist came up with a plan as promised?
All the best,
Hi Gragon, unfortunately they moved my appointment on one week to consult with neurosurgeon at St George's tooting. Went to see them yesterday they are going to fuse and cement my spine. Whilst it help wth the pain,,they say it wont affect the tumour. As mr Tesco says every little bit helps
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