[sachbarnesParticipant]

Dad is going in on Wednesday. Any last minute tips appreciated. Have tried to read everything I can.
Tx!

[mulberryParticipant]

I cannot stress how important it is to go totally overboard with ice consumption. I used ice to the extent that my vision was affected, but it worked, and that made such a difference to my recovery as I had no mouth or throat issues and minimal gut problems.
Take in plenty of underwear, button up PJ’s and other clothing so that the port is easily accessible night and day. I got up, showered and dressed every morning which was an effort at times but it made me feel better, and I exercised around the ward until I was neutropenic. Some patients have access to exercise machines which are a good idea.
I took in a cool box which I used for foods and drinks I fancied, but I had visitors daily to change the cooling blocks, which perhaps your dad can’t have.
Its worth your dad asking if the ward keep food in the kitchen, as I found that the way to keep nausea away was to have regular small snacks, esp after being woken in the morning before breakfast was served. Once nausea strikes I found it quite difficult to subdue it.
I hope your dad has a straightforward recovery. Roll on the summer!

[shropshiremumParticipant]

Unfortunately, I suffered terribly with a sore mouth, throat and painful ulcers, so struggled to eat much once the mucositis kicked in. Yogurts were good, and I would mix them with milk to make a milkshake which went down more easily than solid food. I got my partner to buy me an ice machine after the first week or so, as I found the staff were often too busy to keep my jug replenished and even with a fridge in my room, ice was the best way to keep drinks cool. Again, these were more palatable than hot drinks. I also got my partner to bring in fruity ice lollies, which the staff kept in a freezer for me.
Take plenty of reading material, and if possible, a tablet with a decent sized screen to watch stuff on Netflix, iPlayer, etc. When I felt too ill to do much else, I could at least watch the telly.
I second the recommendation for plenty of underwear. Cheap stuff that he won’t care about throwing away. 😉

[shropshiremumParticipant]

Unfortunately, I suffered terribly with a sore mouth, throat and painful ulcers, so struggled to eat much once the mucositis kicked in. Yogurts were good, and I would mix them with milk to make a milkshake which went down more easily than solid food. I got my partner to buy me an ice machine after the first week or so, as I found the staff were often too busy to keep my jug replenished and even with a fridge in my room, ice was the best way to keep drinks cool. Again, these were more palatable than hot drinks. I also got my partner to bring in fruity ice lollies, which the staff kept in a freezer for me.
Take plenty of reading material, and if possible, a tablet with a decent sized screen to watch stuff on Netflix, iPlayer, etc. When I felt too ill to do much else, I could at least watch the telly.
I second the recommendation for plenty of underwear. Cheap stuff that he won’t care about throwing away. 😉

[shropshiremumParticipant]

Oops, uploading issues!

• This reply was modified 2 years, 8 months ago by  shropshiremum. Reason: Uploaded three times!

[sachbarnesParticipant]

thanks for the comments. quick question, dad is having his melphalan today, and they have given him Dex too? dont remember reading that, is that what happened to you also?
tx

[shropshiremumParticipant]

Morning.

I’m afraid I can’t remember if I had Dex as well, and there’s no mention of it in my paperwork.

Hope all goes well for your dad.

[mulberryParticipant]

I can’t remember having dex either, but it’s possible, so much was going on and in hospital I was given quite a few drugs with little explanation unless I specifically asked what they all were. I’d forgotten all this until you asked!

[sachbarnesParticipant]

ty. re ice, did you continue with this constantly during your whole stay?

dad is on day 4 post melphalan. day 3 post cells. doing okay so far, but I guess the next few days will be the drop off right? noticed his blood counts remain normal range for now, but interestingly his neutrophils have gone up. were 3.4 going into hospital then went upto 8 and now 6 post cells. I guess they will drop off in the coming days, but thought this was strange.

tx again for the advice and comments.

[kh0305Moderator]

Hi sachbarnes,
I am a volunteer on the myeloma forum and just saw your post. My dad had his SCT in 2013 and I made sure he went over the top with ice consumption so luckily he suffered no ulcer or throat issues. He absolutely hated the ice so we didn’t continue it through the whole stay, especially given he wasn’t experiencing any mouth/throat issues. He did continue with cool drinks though. I can’t remember what dad’s cell counts were immediately following the SCT but it took a couple of months for them to start returning to normal levels after the drop. Hope that helps and your dad’s recovery goes smoothly.

[mulberryParticipant]

Hi Sachbarnes, it’s only for the day of melphalan infusion that ice is needed, to protect cells in the mouth and throat from the full effect of the chemotherapy.
I hope your dad is doing well.
Patient response during SCT (like everything myeloma wise) is varied. For what it’s worth, my WBC count, neutrophils and platelets gradually dropped until reaching neutropenia, 0, on day 7. It then took 5 days and a platelet infusion for them to start rising (day 12).
On day 0- ie before SCT, my WBC, Hb, Hct, lymphocytes, monocytes and eosinophils were all low, platelets and neutrophils were ok. On day 12 I literally felt myself getting better hour by hour, a lovely feeling! By day 100 all bloods were in normal limits except neutrophils slightly low. And they have continued to be very stable over the 3 years since- I’ve been on low dose lenalidomide maintenance. My neutrophils dipped significantly on 10mg dose so after about 6 months I reduced to 5mg dose which i tolerate well.
On day 0 I had a trace of paraprotein (less than 2g/l), since day 37 I have had no paraprotein detected.
I had a few bumps in the road during SCT process, such as catching parainfluenza virus while in hospital, and needing to be readmitted for a few days- but even at the time these didn’t feel significant as I didn’t feel really ill,or that things were out of control.
I hope your dad does well and that all his blips are little ones.

[sachbarnesParticipant]

thanks all. day 7 now and his neutrophils are nearly at 0, platelets 42, coping okay so far. they have him on gcsf injections too.
feels a little sick, and appetite has gone. has to just get through this part, and hopefully on the up soon.

[mulberryParticipant]

I found eating something first thing when I was woken up helped me to avoid nausea (breakfast was a couple of hours after being woken, by which time I did feel nausea). I kept some cheese & biscuits in my locker, odd though it seems now, it was nibbling the cheese that helped.

[tony642Moderator]

Ice pops are good too!

[mulberryParticipant]

I still can’t face ice or ice pops 3 years later, they just remind me of melphalan and I feel nauseous at the thought….

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