Avelumab and Axitinib

Hubs has his pre-treatment blood test today which as he looks pale, will probably result in more transfusions. 

He has a quieter voice which sounds as if he is about to lose it, a side effect of Axitinib as I read the leaflets….just hope it means it’s doing it’s job!

He’s found his appetite, though! 

Hugs xxx

Good luck for today. Xx

Hello Moomy and everyone else xx

just some quick history. RCC in 2013, right nephrectomy then 5 years clear scans............until......... pituitary gland metastasis in October 2018, needed drain and VP shunt (still in place) followed by 5 fractions of stereotactic surgery soon after. 

Some nodules on lungs seen on CT scan in 2020 so commenced the combination Axitinib and Avelumab in Sept 2020. I had antihistamine prior to the first 3 treatments, but I have not had any adverse reactions and do not need it now.

latest scans both CT and MRI head have been positive in that there are no signs of any mets in my lungs and the tumour in the pituitary is almost immeasurable. 

I have the sore mouth, very sensitive to hot / spicy foods and even toothpaste (currently using 6 to 8 year old toothpaste and a soft toothbrush). voice hoarse, on and off but getting used to that now. Blood pressure went up so now on tablets, also thyroid levels increased, again on tablets for that .

I do feel tired most days, especially the day after Avelumab. (I also attend the Churchill Hospital, what a great team :-)   

I now live alongside cancer and from scan to scan, but I am still here and in a much better position than some others.

I do hope that this treatment gives your hubs some good results and peace of mind for you.

take care xx

Nice to hear some good news re this combo @p30

Hi P30, It has been so good for me to read your contribution.

I have problems with blood pressure, underactive thyroid, only one but underactive kidney, sore hands, feet and mouth, tiredness, antihistamine prior to the first 3 treatments, shaking and coldness following treatment.

My next and fourth treatment is next Friday when I will be admitted to the hospital for safety and not just as a day patient.

Your tip about toothpaste is a winner. My hubby bought children's too toothpaste which I used today.

My next scan is 22 June which I hope is good news because the coughing has subsided significantly. I still have not totally adjusted to the reality of living from one scan to the next and neither have friends and family. They are so used to me being the "can do", strong one who works on positive planning.

It is good to speak freely and listen to those who share my journey.

Thank you for your generosity.

Good to hear from those ahead of us, thank you for your advice and support.

we have taken temps and oxygen sats for months since hubs was admitted in January, but he’s added blood pressure checks too which have been fine so far.

he’s had the voice-that-sounds-as-if-it’s-going, but isn’t…..and definitively had the bad shivers with associated low temp for about 4 hours after the first treatment, and will tell them on Tuesday when we go for the next.

One thing that’s happened, his previously very swollen legs have eased right off and look very near normal again. He’s lost weight (especially arms and neck) a bit around his middle as he’s needed a belt for his shorts.

hope everyone is doing ok, keep posting….

Hugs xxx

Tomorrow is infusion number 2, just hope he doesn’t get those shivers again. His temp at the time was below normal too. 

He has begun to use a generic ‘treatment’ booklet to check off symptoms too. I feel he now accepts that he is trying hard to keep going and hoping treatment helps but at the same time is trying to plan for the worst. 

Hugs xxx

Hi Moomy

Hope it all goes well. We are in for number 4 infusion today, it does get easier. 
xx

Hello, it makes me happy to read this and that my contribution to this thread has been helpful to some of you.

We really are all in this together and I for one really appreciate the messages and updates on here, so thank you x 

Just a quick one, I have just had my follow up appt since my last CT scan and it's all clear! No evidence of any Mets or recurrence of the cancer. Obviously this is fantastic news.

I am still waiting for my MRI head scan but I am feeling positive. 

X