Welcome to Cancer Chat, MB_Glocs.

I'm sorry to hear that you're diagnosed with kidney cancer and that now they new tumours in the lung, adrenal gland and pancreas but I'm glad you're keeping a healthy and active lifestyle.

As for your question and while you wait to chat with other forum members here I thought I might leave you with some information on kidney cancer chemotherapy we have on our website. I hope this can be of some help.

Wishing you all the best,

Renata, Cancer Chat Moderator

Hi there,

your story is so farmiliar to mine. I’m 2 years in on chemo tablets and just about to start immune therapy. 

I had my r kidney removed 3 yrs ago and have small tumours in both lungs. They have yo yoed in size since then and started Sunitinib Oct 2018 then axitinib dec 2019 till now. Tumors have grown again so will be starting immunotherapy this month so hopefully it will stabilise things. It takes a little while for your body to adjust to the chemo tablets and everyone has different tolerance levels I guess. My doctor started me on high doses and I struggled so he reduced them down to enable me to work and have a better home life. I’ve learnt now that you need to be kind to yourself and this a a marathon and not a sprint.

Do what’s right for you. Here anytime if you want to keep in touch.

love

jeanette

xxx

Hi Jeanette,

Thank you so much for this. I have been in a dark and lonely place this week. I tried researching the tablets and found the survival rates and such like and just tied myself up in knots.

My wife has been fantastic and said that as much as she is there for me, I need to find others who know what I'm going through and can light and guide me along this path I'm now on.

I am trying to be positive and my diet is radically different to what is was just over a year ago. I'm cycling too, but that may have to sit to the side if the decision is made to start treatment and it hits me hard to begin with.

I'm in the self-grieving stage right now as I have a 6 year old adopted son who is so loving, I am so scared of leavning him before I should.

I'll see what the scan reveals, and hope that it is not quite time to start the treatment, and I'll be prepared for it if it is.

I would like to keep in touch and I hope your immuntherapy goes as well as possible.

People keep saying to me, "you'll be fine"...I'd rather they say "Make the most of it".

Cheers

Matt

xxx

Hi Matt 

It's totally normal to feel the way you do. I've been through every emotion possible and it really helps to connect with people who totally understand and get what your going through. 

I have two sons 15 and 18 and they have been amazing the last 3 years in coping with all of this. Kids are so resilient and a great distraction from the daily churn of thoughts about the what if's. 
 

sounds like you have a wonderful wife supporting you and it must be hard for them too. My husband is amazing and knows when I'm having a bad day so I can open up to him and tell him what's going on in my head. 
 

Try not to read up too much online as some of it can be a bit overwhelming and cause more worry. 
 

Happy to stay in contact. It's good for me too. 
 

You take care. 
 

jeanette

x

Hi Jeanette,

I have an appointment on the 15th March, following a scan still to be book in the first week of March.

I'm very nervous as I think I'll be starting the treatment. Pazopanib is the one I'll go with, and I almost tossed a coin to decide as the side effects are so similar.

We're getting two puppies next week to cheer us all up, so hopefully their crazyness will take my mind away from the constant noise in the background that is living with this.

My best mate asked if I could describe what it's like so he can try to understand it, and I said it's like the background noise in the Sky TV Chernobyl series. A constant electric scratching that's always there, but that can be drowned out with 'stuff'.

Anyway, I hope you respond well to the immunotherapy and if you don't mind at somepoint I'll ask you about your experience with it. But don't share if you don't feel or want to.

All the best

Matt x

Hi Matt, 

sounds like a busy household this week for you with the puppies. They will bring so much joy to you all and your son especially, they will be the perfect distraction as you say.

I've not watched that programme but I can totally relate to how you feel.

Deciding which drug to try is always a hard call and it's a bit overwhelming at times with all the information supplied.  

What I have learnt (and been told by Macmillan) is that this is a marathon and not a sprint. It's helped me accept that this is something I need to live with for the foreseeable. 

immuntherapy started last week. I was nearvous but the nurses are amazing and help make the whole process less clinical. I feel ok so far so will see how things go. Next session is 11 March, but at least I will know what to expect and not feel so anxious. 
 

I have a dog - Buster the Cavalier King Charles Spaniel, he's 10 and a proper lap dog but a nightmare on a walk- barks a lot! 
 

Taking things a day at a time is all anyone can do at the moment. It's good you have a treatment plan in place and a scan very soon so let me know how it goes. Only if your comfortable to do so of course. 
 

anyway, you take care and enjoy the new arrivals

all the best

jeanette x 

Hi Jeanette,

I hope things with you are as well as can be expected. How is the immunotherapy? 

I've been waiting for a decision on treatment, and finally have been told I have to have another scan before they make a decision.

The three main tumours were in my left lung, on my right adrenal gland and pancreas.

The lung one has progressed, 10mm, 16mm, and in March 25mm (which I only found out on Monday). The other two has stayed the same size.

So now I wait for this new scan and a decision on TKI's or Immunotherapy. It's just rubbish that we are pushed to side with Covid :(

Oh, and Annie and Pickles are doing great. Annie is nuts, Pickles just a ball of fluff.

Anyway, take care Matt x

 

Hi Matt 

lovely to to hear from you. 

Waiting for for results and decisions is hard and during this extra stressful time with Clovis as well, isn’t easy. 

Lets hope the right treatment plan plan gets put in place for you quickly after your next scan. Did you start the sunitinib in the end?

Ive been ok. Got scan results this week and was a bit disappointing(tumours increased in size) but the good news is that it has not spread and we still have options for different treatment. The immune therapy doesn’t appear to have worked which I really hope it would but there was always going to be a risk it may not succeed. Anyway, will go back on chemo tablets week after next - a new drug I’ve not tried. Cabozantinib so hopefully this may help. I’m also being referred again to see if there is a drug trial they may be able to get me on as well so will see what happens there. 

The excitement of the footie this week has been a bit of a welcome distraction

Anyway, try to stay focused and positive (you must hear this all the time lol) and take care.

keep me posted how things go.

Give Annie andd pickles a tummy tickle from me

jeanette xx

Hi Jeanette,

I hope you are well in our unfortunate circumstances. How is Cabozantinib? Did you get you get on the drugs trial? And did you see Emma Raducanu? It made me cry with happiness and I have no idea why.

So I finally started treatment, Sunitinib and I have a few side effects so far. The worst is the sore mouth. It feels like I've swallowed a cup of boiling water. Other than that some fatigue, some unmentionable with me bowels and sore toes.

I'm on 4 weeks on 2 weeks off with blood tests, egc etc to see how it's going.

I only have one question, did you get the sore mouth issue and if you did what toothpaste did you use? It feels like I'm cleaning my teeth with molten rock!!

Thanks

Matt

Hi Matt

lovely to hear from you again. 
 

I remember having mouth trouble on sunitinib, mouth was sore for a while and was told to use baby teeth toothpaste as I couldn't tolerate adult toothpaste. I'm still using childs toothpaste and have advanced to 6+ years, toothpaste now lol I found the skin on my hands and feet got sore and dry so definetly need to use the paraffin Vaseline type stuff to help. 

Hopefully things should start to settle down for you. I used to love having the two week break I felt I was back to being me for a while. 
 

Im doing ok on the new drug. The fatigue is the worst I've experienced, breathlessness, loss if appetite and weight loss. I'm not able to do all the rushing around things I used to do and still battle with it in my head, but I'm accepting that I can't do it all now and rest when I can without feeling guilty. Unfortunately the hospital have said that my tumours are not biopsyable currently. Just taking a day at a time takes less energy that stressing about the future. 

I didn't watch Emma's match but have enjoyed seeing how humbled she is and has set a wonderful example to young people. The olympics was a good watch. 
 

Hope all is well with the dogs and your family. 
 

You take care

jeanette x