Side effects..he really needs a break

Hi 

I'm sorry to hear that your dad is experiencing very bad symptoms at the moment and I'm hoping that since writing this things have improved. If not, then don't be afraid to speak to his CNS yourself if the hospice are not liaising with the hospital.

x

Thank you for replying. Just this morning the hospital doctors have instructed the hospice to stop the chemo, and they’ll discuss next steps with dad on 8/5 at his scan review. They apparently said they hadn’t his results yet so it would appear the decision is purely based on severity of side effects and not ineffectiveness of drug itself. My dad has said he feels well in himself but can’t go home yet as the skin lesions and swelling in his legs are so bad, he needs more than one person to help him out of bed. I think the key thing for anyone in this position is to not fear a treatment break xx

Hi Mogiington

I am sorry your father is suffering such severe symptoms. It sound like a very serious version of the side effects my father had from Sutent.

Have you tried asking for advice in the Kidney Cancer group?

I am only a daughter, so all I can offer is understanding of your concerns, but though I only joined this community today, reading through the Kidney Cancer Group has already helped me tremendously.

All the best to your father and yourself

Hi there 

Welcome to the group but sorry you’ve had to join. I am also in the kidney cancer group, and the secondary bone cancer group...I have found all 3 a really great support and it has been a help searching to see if I can find others with same experiences. I’ve found a few historic posts about the effects of cabozantanib and also some articles where it seems to be known for them..in fact I found a study paper published only this month in US where doctors were trialling patients on a lower dosage from the start and getting same results...presumably driven by tough side effects. 

Thank you for taking the time to respond...wishing you and your father well x

Hi there, so sorry your dad is experiencing such tough side effects, don't normally post but my husband is on cabozantinib and like you, because the drug is fairly new, I have found there is very little available ianecdotal nformation on long term usage. 

My husband has had far fewer side effects but finds the build up of toxins over the weeks eventually make him vomit and he usually takes a break of a couple of days about once every 5 weeks, he may be younger than your dad at 50 and underneath the cancer is fairly fit and does tend to tolerate medication well but he started on the lower dose of 40 mg. When I questioned the lower dose than what I believed was usually 60 mg, I was told that so many people really struggled with the side effects that our hospital now always started on 40. My husband has taken Cab since November and is due his second set of scans, the first set 3 months ago showed significant reductions in all tumors apart from those in the bone which remained stable.

Our consultant allows my husband to judge when he needs a break but obviously take advice from your oncologist as everyones case is different.Do you have access to a specialist nurse you can contact? as ours is easily contactable, knows our case very well and will always advise with worries between appointments. 

I really hope this helps I am no expert and I literally never have the confidence to post but your dad's case sounded so much like ours, please discuss this with his consultant but I just wanted to share our experience, hope this helps. 

Sending you my very best wishes. 

Hi there, 

Thanks for your reply. Dad has now been 7 days without it, and is so much better. He comes out of the hospice today, and on weds has the results of his second scan. All being well, he is hoping they will agree to put him on 40 mg also. I read a study paper released this month where a number of patients were started on 40mg and results were as positive..it’s frustrating that it’s clearly known that patients can struggle with toxicity at 60mg yet my dad has been left 3 months without follow up appointments (he has been hospitalised 4 x during this period yet still kept on dose apart from odd break due to other treatment). I’ll share your response today..it will make him happy x Hoping you and your husband continue on the positive journey x

So glad your dad is more comfortable and able to come home, thank you for your well wishes and sending you all the best x