[lilibParticipant]

Hi everyone. My husband is currently going through all the tests and assessments in preparation for the HDT-SCT which may start in about a month. He told me yesterday that he was thinking about not going ahead with it, so I asked him why. He is very bothered by the idea of a NG feeding tube. I can’t say I blame him, but it does seem a shame to refuse the SCT having come this far, because of a tiny tube.

I have suggested that he find out as much as he can about it, and whether it is absolutely essential. I am wondering if anyone here has had the HDT-SCT and not had a NG tube. We understand the reasons why it is used, this was explained to us in detail last week, but I guess a phobia is a phobia.

[mulberryParticipant]

Hi Lili
I suspect this is another of the many examples of patients assuming that they will get every side effect/problem mentioned. Drs have to warn us of all of the known side effects or problems that can occur for patients, and this is totally alarming for us, in my case I was petrified that I would die. Although most patients get some side effects, a few get a serious one, but a few get absolutely none at all, other than loosing their hair.
I certainly was no where near needing a nasogastric tube, I was able to eat (although not quite a normal diet) throughout the entire process. Actually I have never met anyone who has needed an Ng tube, although I can see that this might be possible at the very extreme end of reactions to SCT. If your husband eats, crunches, sucks vast amounts of ice/ ice lollies, 30 minutes before his melphalan infusion, until 20-30 minutes after, he stands a good chance of protecting stem cells in his mouth and throat from the melphalan, thereby avoiding mucositis which is what leads to a sore mouth and throat.
It is far, far more likely that your husband will have extreme diarrhoea & nausea than needing an Ng tube. He should check this out with his myeloma nurse or the SCT Dr. I hope this reassures him. (By the way I had mine 3 years ago and within 3 months was feeling brilliant, which has continued since.)

[lilibParticipant]

Thanks for replying so quickly, Mulberry. He is at the moment attending a 4-hour consultation with dietitians and fitness assessors, so I am hoping he will talk to them.

I thought I understood from things you have said before that you did not have NG during your treatment. The thing is, I was at the consultation with him last week, and they pretty much told us ‘you will have this because it’s easier to insert before your digestive tract gets mucositis, rather than waiting until some damage has already occurred’. It really was told to us like that. A must-have.

[mulberryParticipant]

May be different hospitals do things differently, and my experience was on the mild end, but even patients I’ve known who’ve vomited a lot, so felt very wretched, who have needed pumps to keep topping up anti nausea meds, have not needed NG tubes. My hospital did provide ice & lollies- does his? I didn’t know mine would provide them so took some in, which may be an option for him. Could he be up front with the team about why he can’t face an NG tube, see what they say?

[terrysParticipant]

Hi Lili,
My experience of my SCT in November 2019 was very similar to Mulberry’s. There was no mention of an NG tube. I was provided with ice and I did not have any mouth problems following the Melphalan infusion. However I did have attacks of diarrhoea and nausea. The Staff made me soup and I also enjoyed ice cream during this time when my appetite was suppressed. I also enjoyed mushy weetabix for breakfast!! I agree with Mulberry that it’s worth your husband having the conversation with his team about how he feels about Ng tubes.
Best wishes,
Terry

[lilibParticipant]

Thank you for your reply, Terry. It looks as though our hospital have their own rules/desired action, but we will certainly query the practice of automatic NG tubes when we next speak with the team. I have shown your reply to my husband and he is not being quite so negative about having the SCT now, so fingers crossed. He is quite fond of ice cream and mushy weetabix already, and the dietitians confirmed that there’s plenty of ice lollies, etc available on the ward.

The first consultant that we saw a few months back was giving us the hard sell on ambulatory care during the HDT phase, and I was very worried about that, but it turns out that it’s an option that can be refused, so I’m hoping that the NG tube is the same sort of thing.

[kh0305Moderator]

Hi Lilib,
Just adding to what has been said already, my dad didn’t require an NG tube either. I fed him ice non stop before, throughout and just after the melphalan infusion (despite his complaining! He unfortunately isn’t an icepop fan so it was a bit boring!) and it did the trick and he had no issues with his mouth/throat afterwards. Hopefully the discussions you have with the hospital team regarding the NG tube will give you a positive outcome and reassure your husband. Good luck! xx

[keepingonParticipant]

I had my SCT in February. I went down the ambulatory care route but decided after about 8 days that I needed to be in hospital. I lost my appetite completely and was told that if I couldn’t eat I might have to have an NG tube. This encouraged me to make a greater effort! At first I could only manage small amounts but I forced myself to eat at least some part of my hospital meals and friends delivered things (M&S custard yoghurts) that I could eat easily. Once I started eating the NG tube wasn’t mentioned again. I suppose from a medical point of view an NG tube isn’t a big deal – mainly because it’s not the nurses who are having the tube inserted – but I think my reaction to the idea would be the same as your husband’s. I can’t imagine that it would be necessary though. Good luck with the treatment.

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