Cabozantinab 60 mg

Hi

  see post Mid July fromre Cabozantinib

Thank you x

Hello, I’ve been on Cabozantinib for 18months after 4 years on Pazopanib interspersed by 12 months on Nivolumab (that was ineffective). The thing is that if the Cabozantinib works for you they are really effective, in my experience. I hope that your body reacts as mine did and the Cabozantinib does what it’s designed to do I.e shrink the tumours. As with all cancers the biggest struggle is with your brain and trying to keep all the negative thoughts under control. I’m not one to sugar coat my advice so be aware that some of the side effects can be not very nice (to put it mildly), you’ve got to hang on in there and find a way of dealing with them by whatever means is open to you.

best wishes 

Phil

Thanks brighteyes1948

Hi Phil,

Thank you for your reply it's given me a lot of hope. Which to be honest I haven't had much of it lately and have been despairing for the past week or so since my appointment. I had a radical nephrectomy in Feb2020 and was advised of start treatment (targeted therapy) when I had recovered from the op. They had initially wanted me to do therapy first then the opportunity but then decided to remove the kidney 1st as they thought it would calm things down. Fast forward 2 scans and referral up to oncology 5 months later and things have gotten worse. The oncologist advised me I was stage 4 from diagnosis and incurable but manageable which I have held on to. Managable! The cancer has spread to my lungs. And also growing back in the void after my nephrectomy. When the Dr told me I thought they meant my kidney had grew back lol. I was in my back to the car park after picking up my cabozantinib prescription when the Dr rang me to go down to xray and they found it had spread to my arm and shoulder. I think iv been in a bit of a daze to be honest. Its been 7 days in the drugs now and I'm just starting to be a few side effects now but they aren't too bad yet as it's only been a week.

My husband is in a terrible state with worry and I feel so guilty and helpless that everyone is going through this because I'm unwell. The pathology from my kidney said I had high grade aggressive RCC and like I mentioned earlier they had initially hoped the nephrectomy would slow things down.

I'm glad to hear the cab is working for you. I'm hoping it will be the same for me. Thank you again for getting back to me. I had read loads on here about other drugs such as paz etc, but not many mentions of ours. 

Thanks again. I have been so worried, dazed and shocked this week so your message has made me feel really positive.

Best Wishes Donna 

Hi Donna,

I've seen your posts before but not chatted as others had better and more relevant information but a belated welcome to the group.

Whilst there is no such thing as a good cancer if you are to get kidney cancer RCC is the one that has had the majority of the research funding.  It makes up about 80% of kidney cancers and it is the one that most of the treatments have been developed for.  Whilst I do feel for the situation that others with rarer cancers of all types find themselves in significant steps in treatment have occurred in the past ten years.  There is no doubt in my mind that more research is needed into all cancers and perhaps it is time for some of the less common ones to get a bit more of the funding.  However it does mean that your oncologist has quite a few treatment options for you.

I have been on my treatment for five and a half years now and my son is now 15, something that I initially worried I would never see.  I found the Macmillan helpline really helpful to start with.  They are very good at emotional support but can also give financial advice.  In my case they have helped with advice on claiming on life insurance, taking early retirement on medical grounds which meant i received my full pension paid to my expected retirement age of 67  and applying for Personal Independence Payments (PIP) which is a non means tested benefit.  They also advised me of my employment rights.  You can call them on 0808 808 0000.

Perhaps if you asked your husband to call them on behalf of both of you he will have to explain the situation to the person on the phone and might open up a bit before they arrange for a financial advisor to call you back.  There is also a Macmillan renal nurse specialist at the hospital I attend and I discussed with her about disclosing my condition to my son although you have probably already dealt with that.

You may have done all this already so my apologies if you are aware but I would rather repeat things than leave you unaware.

I hope that your treatment suits you and you get minimal side effects but if you do please remember that there is a lot of experience here about dealing with the side effects.

I haven't checked which groups you are in but you might want to have a look at the living with incurable cancer group as well.  I get different things from both groups.

Wishing you and your family all the best.

Gragon xx

Well said Gragon

Sue

Hi Donna, just a point for your consideration is that if Cabozantinib is effective for you (and god willing it is) it will attack all your nodules. Always remember, we are incurable AT THE MOMENT, who knows what drugs they can come up with, there’s a lot of very clever people out there working tirelessly to find the silver bullet. Couple of things to finish, if you need any further help or advice I’ll be here whether  it’s on the community or private it’s your choice. Last but very much not least a piece of advice I was given 13 years ago when I was first diagnosed “cancer is a word NOT a sentence”. Keep your chin up, with all my best wishes Phil.

Hello Donna

I am really sorry to hear about your recent diagnosis and all the info that you had to process recently. I thought I will drop you a quick message because your story sounds very familiar.

18 months ago my husband was diagnosed with RCC that we’ve only discovered by accident when he had a fall and needed an X-ray on his arm. After that he was sent for MRI and week later we were told he had cancer in his left arm.  Another week and CT scan we were told he had the primary tumour in his left kidney, multiple nodules in lungs, lesion on his rib cage and a couple of lymph nodes had the disease too. It was such a massive shock - he was in his early 40 ties,  fit and healthy with very active lifestyle.... 

in the first three months post the diagnosis he’d lost 3 stones because he got so depressed and the team looking after him decided he is not fit enough for nephrecromy and instead started him on Cabozantinibib ( it was May 2020) they also removed the tumour from his arm and he now has bionic limb ( metal bone) - pretty amazing what they can do these days.

a year on and he is doing pretty well- after 12 months on the treatment the nodules have significantly reduced in size, the lesion on rib cage is gone and the primary tumour has shrunk so they are now planning to remove the kidney in autumn.

I know how hard it is and particularly for your husband but try and stay positive. These drugs are really powerful and I hope they will do the job for you. Side effects can be tough but our team had all the tricks for pretty much every single one and it gets easier with time.

Last year our world literally crashed over night, today I believe we still have Future together even if it means we have to adjust to a new normal but it’s something that we all have to do these days ....

best wishes

H.

Gutted for you reading this. Wish I was in Newcastle right now. Sending the biggest hugs and hoping you're doing ok xxx