Hi everyone. Newbie here!

Hi Claire,

Glad you decided to join the forum, you will find great support here and answers to your questions.

Hope Chris is feeling a bit brighter today.

Love and hugs

Angie xx

Hello Claire,

How is Chris?

My husband has just had his 2nd chemo treatment, together with his first immunotherapy infusion on Wednesday. He has 2 hours on the chemo drip then has to take a pump home with continued chemo for 48 hours. It's in a small bottle that's connected to his PICC line. He has a natty little 'man bag' for the bottle to sit in when he's up and about. It's a bit of a conversation killer when people ask what it is, but has made it easier to tell friends and neighbours.

Sending best wishes,

Lorraine

hope he is doing well lorraine, some one suggested to one of our friends hubbys to say its a massive hip flask, and found him something to match although does depend on what the mood is, good that he is getting on with it.  a "close" friend, said to husband, weight loss, wish i could lose over a stone that quick, mmm, husband has now put them on the no rush to call back step, all the best x

Hi Lorraine

I’m having similar treatment- 30mins immuno infusion followed by 2 hrs chemo plus 46 hr takeaway pump. At last scan (been having this treatment since April x2 weeks) my cancer was showing ‘Complete response’ ie knocked back 100% by treatment to date. Doesn’t mean cured but hopefully can look at some kind of maintenance to keep it under control. At this stage it’s best possible news. Wishing your husband a similar outcome.

Thanks for this, Dave. So, you must have had about 12 cycles now? Will they continue the immunotherapy infusions after the last chemo? Have you been able to get away for any kind of holiday at all? Sorry, I have so many questions

Think I’ve had about 10 cycles. Yes they will I think but they are now looking at options. Mainly to reduce the 2.5 hrs infusion and to reduce the drug (oxyplatyn?) that gives finger - fizz which I have for about a week after chemo. Apart from all that feeling very well. Had a prob with lack of appetite and not appreciating food but seems to have gone away. Yes - holiday in Cornwall (never stopped raining) Feeling so much better and looking forward. D

Thanks again, Dave. I read your reply to my husband and he said that's just what he's hoping for. He gets the tingling fingers too but is getting better prepared to avoid/minimise it. He gets a loss of appetite a day or so after pumpdown and it lasts a couple of days. Rod's getting used to the tiredness too, particularly the 'slump' from the steroid comedown. The only food he's avoiding still is a fresh apple. It was eating these that he first found he was having difficulty with his swallowing. So, he thinks this is probably more of a psychological barrier. 

At what point in your cycle did you go away? Also, do you have a PICC or port?

Lorraine

Hi Lorraine

We had a holiday about 3 months in. Staying with friends in Cornwall- nothing too adventurous (though I did go paragliding for a day) I have a port. Which is great until time for infusion. The hospital doesn’t have the correct needle fitting so it’s touch and go most times. Last time took 4 attempts to hook up properly which delayed start of treatment by 1.5 hrs. Btw - agree about the psychological aspect with food. I used to love any form of cheese but can’t face the idea of it now. All the best D

Dave, this was a great post to read. It made us laugh when you mentioned the paragliding. Also interested in what you said about the port. The hospital Rod is with seem to be well set up for them. The nurses are pushing for it on his behalf. Fat- ass burger tonight went down a treat. The home made coleslaw was not so welcome. No adverse reflux/ejection but Rod said immediately that it didn't feel or taste right. After all the effort he put into making it, too! 

All the best to you too 

Lorraine