Advanced CSCC Treatments

Hi Follyfoot and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm sorry to read that your husband has recently discovered that his cutaneous squamous cell carcinoma (CSCC) has spread to his lung.

I agree it's confusing but when a cancer spreads to another part of the body it is still the original type of cancer which is why it is not lung cancer that your husband has. This would be exactly the same if it had spread for example to his liver, it would still be CSCC and not liver cancer.

I don't have any experience with cemiplimab (Libtayo) and unfortunately can't find any previous posts which mention this type of immunotherapy.

Your husband should have been assigned a cancer nurse specialist (CNS), sometimes referred to as a keyworker, to help with any questions he has. I know that's not the same as talking to someone who has actually had the same treatment but hopefully she'll be able to help him further.

When does his treatment start?

x

Hi thank you for replying it’s very helpful.  My husband had bloods taken on Friday and was told that he should hear something this week. I will try to post how the treatment goes if it goes ahead.  I have read some positive articles about this immunotherapy which is being used in Australia.  But I haven’t heard or noticed many people with this particular cancer spreading to the lungs.

Hi, My husband has SCC which is very aggressive and has spread to his lymph nodes,  he also has a type of leukemia.

He has had 5 cycles of immunotherapy with the same drug your husband is having. It had a very good effect on tumours on his head and they shrank quickly. He did get an infection and was poorly in hospital for a few days but was able to stay on treatment.

However one of the lymph node tumours has got bigger, he has just had a biopsy on a new lump on his leg and there is a small suspicious looking bump on his head so the treatment seems only able to slow the situation.

Sending you very warm wishes

Hi Ros85, thank you for this information sorry to hear about your husband I know how difficult it is.  Where is your husband being treated?  I have found out a bit more about my husbands cancer.  It is advanced SCC which is a skin cancer on his lungs so not the normal lung cancer.  To look at him you wouldn’t think he was Ill.  He had another  scan on Friday and has a couple of other appointments this week before he starts his treatment on the 19th hopefully they won’t cancel it as I believe that will be a bank holiday now.  We are hoping that it hasn’t spread anywhere else.  We have heard good things about the treatment so will try to stay positive.

Do you mind me asking how long your husband has had cancer?

keep well and keep positiv3. X

Hi,

My husband is under the Guys Cancer Centre. His SCC was diagnosed in Nov 2021. We were told that the drug he is getting is only available for patients not suitable for surgery or radio and whose cancer is technically incurable. It is also only available, at the moment, on NHS for max 2 years. 

I am not sure this is helpful... sending you warm wishes 

Hi

yes we was told the same thing, a bit worried because is first treatment is due on the 19th but we have just learnt that it will be a bank holiday now so worried they may cancel it, can’t stand the idea of waiting longer

Hi, I really hope they can still do the treatment ..our hospital have been very flexible..emergency op on a saturday decided on a Friday and rearranging treatments at very short notice.

Which hospital is your husband under? It is all very scary isnt it especially as for most people SCC really isnt ever life threatening.

My husband has had some good psychological support via the hospital..are you guys getting this?

very warm wishes   

Hi, my husband is at Mount Vernom his first treatment is on the 19 September we are worried that they will now cancel and we will have to wait another week or even longer.  I know there are people worst off then us but the thought of waiting longer is heart breaking we just want the treatment to start, he has got worst over the last week.  It is very stressful as you know and will be so disappointed if it is cancelled.  The hospital staff have been very good.

Hi, I was just thinking of you and wondering whether your husband had had his treatment?

My husband's new lumps have all started shrinking again and the one that was biopsied showed no live cancer cells but lots of dead ones so the drug seems to be winning for now.

Warm best wishes to you both

Hi

yes, he had his first treatment 3 weeks ago and had no side affects, however one day he seemed to cough a bit more so we reported it to the hospital and they told us to go in.  They said it wasn’t a normal side affect and decided to do another scan in case he had an infection that needed treatment.  This was one week after his first treatment.  They warned us that it may show his tumours had grown which was normal as the treatment was slow.  To everyone’s amazement 3 tumours had strunk and one had not grown and the other had just grown a mm.  we was delighted.  

Their only concern was his platelets which had gone down a lot but he had had this problem for a while.  He has had to have a couple more blood tests since then in case they dropped to low which would mean delaying next treatment which has been a worry. Thankfully on Friday they told us he could have his second planned treatment on Monday, so pleased.

It all sounds very positive although we know nothing is for certain and we have a long way to go.  I am pleased that it seems to be working for your husband too such good news.