Hi - I'm new here

Hello Richard, and "welcome" to a club nobody wants to be a member of. I am sure there will be people on here that will be able to offer advice on this matter. Unfortunately I am not one of them as I am on targeted therapy in the form of a tablet taken daily. It would probably help if you listed the actual chemo medication you are on.

I am also on palliative care, and have been for over two years now. So, you see, it is amazing how long we are carrying on after the initial diagnosis, and new treatments are constantly being developed. Keep positive, and I hope someone else on line can give you some more practical advice,

John

Hi Richard

So sorry that you have cause to be on here. Well done on navigating through the fairly recent site 'improvements'!

When I was going through my chemo (cisplatin & etoposide) I was almost obsessed that I could be a bit whiffy. My brother who was with me the most during my treatment said I didn't but would have lied as he was so worried about me; lots of petty sibling squabbles in hospital waiting rooms regarding this!

What chemo are you on? Which type of lung cancer do you have? I only ask as this info will help others on here to chip in with their experiences.

Have you discussed this with your cancer team?

Also, there are many in this group who are living with incurable cancer many years beyond their 'use by date'; so never give up hope.

Kegsy x

Hi Richard63 and welcome to the group, but sorry you find yourself here. I haven't had chemo myself, so I am unable to give any advice regarding the odour issue you are having. I have seen that you have asked the nurse in the expert section, so hopefully between her and the group you will get some help with this. 

I am really sorry that you seemed to have trouble finding us initially. There is a Technical-support page which also has a chat bubble on the bottom right of the page, so you can talk to someone there if you are having trouble finding your way around. 

You can also email the team at community@macmillan.org.uk and someone will assist you.  Or you can also ask me here, and I will help if I can. 

I hope that now you have found us, you will find us a supportive group. It does help to be able to talk to people who are going through a similar situation to yourself. 

Take care 

Thanks for the kind thoughts John Boy2.  I will list the chemo I am on in reply to another post so see below.

Hi Kegsy

Thanks for your kind words. Though I wouldn't wish it on anyone, it is slightly comforting to know someone else has experienced being "a bit whiffy" and that it is not just me!

My cancer is described as none small cell and my infused meds are: Pemetrexed, Pembrolizumab and Carboplatin. In addition I have an anti-nausea pill for a few days after treatment and a folic acid tablet every day.

My cancer team? I'm not so sure about the team bit - one face to face with the oncology consultant, two telephone conversations with an oncology professor and three telephone calls with three different "specialist" nurses. No I haven't yet mentioned the odour to any of them but will do so in due course.

"Give up hope" - never!!!!!!!!!!!!!! 

Thanks Chelle.  I'm finding my way around now.

Hi Richard

My husband had nsclc and was given the same chemo/folic acid etc that you have been prescribed... and Yes, he also emanated a strange somewhat sweet yet chemical smell! At first I ignored it but we did manage to joke about it when I eventually told him he stank.  Thankfully, the smell did lessen.

He never lost his hair but for a couple of weeks after session 3 he shed his skin!  To the  point I even had to hoover his slippers and the bed every morning.

I wish you well and all the best with your treatment and hopefully the level of face to face time with the cancer 'team' improves  (it can't be any worse than we experienced at Stoke) 

Hi Pooka

There is some small comfort in knowing that I'm not the only smelly one!

My third chemo session should be next week based on the three week cycle that I was told would apply.  I don't have a confirmed appointment for the treatment but I do have a telephone appointment with one of the "team" on Monday. It's anybody's guess as to who that might be. I'm at Stoke too!

You don't say how your husband is.  I wish him well and hope that his treatment is working.

I had a strange feeling when you mentioned the so called team and professor doing the telephone appointments that you would confirm Stoke as being your hospital!

Sadly.. (even though I fail to understand why as UHNM has a separate building) early Covid restrictions meant my husband's proposed treatment was cancelled and cancer won the battle.

You may be a bit whiffy and pongy for a while but demand they listen to you, get your treatment and stay well.

Keep strong and positive.

Pooka - I am so sorry for your loss.  In the circumstances it is very kind, and brave, of you to give help and support to other cancer sufferers - thank you.  Your encouragement will help me.