Tagged: SCT, Side effects, stem cell transplant, VTD
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I found the following useful:
-Button up PJ tops rather than nightdresses as lines went into my Hickman line in my chest
-Wet wipes and soft loo rolls, plenty of!
– loose, comfortable clothing, if possible it’s best to get dressed every day, and to wear clean clothes everyday.
– a change of nightwear for every night (an arrangement to do washing and bring in clean things)
– simple pastimes that don’t need too much concentration, in part because nights are so disturbed that your mum is likely to snooze on and off, not because she’ll necessarily feel poorly.
– I took in a cool box and had snacks and drinks in it, with my husband bringing in ice packs every day, but that may not be feasible with covid regulations. However a few days before I was discharged I was told that there was a patient fridge available….
– a hat or two, I also wore my wig during the day.
– I didn’t use many of the things I took in to pass the time. I felt pretty ok days 1 to 8 and did a fair bit of walking around, then felt poorly days 9 to 12 and slept most of the time. By the end of day 12 I knew I was on the mend and was discharged day 13 (although readmitted shortly afterwards!) It was during 2nd admission I really benefited from the books, films etc I’d taken in.
Although it feels a really risky procedure, and we have to be told about all the things that can go wrong, in reality most of us have only a few of those side effects, and often a much easier time than we fear. I hope that’s the case for your mum.
Hi Marty, thank you so much for this, it is really helpful and I’ve added in your suggestions to my shopping list. I hadn’t thought much about the mouth care and really appreciate your tips on this. I ordered some of those mouth sponges for her. Can you use normal toothpaste? What mouthwash would you recommend? Anything else you or anyone else thinks of would be very much appreciated. Thank you! Jess x
Glad to be of help. I used ordinary toothpaste but your hospital may have a brand they prefer. I’m not sure if you have the same mouthwash brands as we have here in Australia. Just make sure whatever you buy it says “Alcohol Free” on the front. Be aware that the stem cell transplant wipes out the immune system, so hospitals are very fussy about what can be brought in (eg no flowers and certain foods & drinks). I went through an orientation with a nurse before admission where I was given quite a comprehensive list of “dos” and “don’ts”. The main reason for the hospital stay is to deal with infections which are inevitable. This involves blood being taken two or three times a day through the PICC line. I caught an infection from my PICC line but it was caught and dealt with quickly. You should also consider things after your mother is discharged. I was given a two-page list of foods and drinks to avoid after leaving hospital. It would be a good idea to talk to the hospital dietician. I threw out all the prohibited items so as not to consume them accidentally or through temptation. Those undergoing SCT need to be scrupulous with their hygiene. This means washing hands more often than usual among other things. However, I found using soap bars and many hand wash solutions dried my skin out badly. It was a bit of a hit and miss process to find a satisfactory product that did not crack my skin. I found using hand sanitisers useful. Just get a good-quality brand. It might be a good idea to get a good supply of this before any future COVID panic causes another shortage. Face masks are also important when going outside or receiving visitors at home. So it might also be a good idea to get good supply of these. Ask the hospital staff for some before your mum is discharged. Before I forget, the SCT process makes patients particularly susceptible to sun exposure. So talk to your hospital about the most appropriate sun protection. Good luck and try not to worry too much.
Thank you Marty, very worrying time, so your advice is greatly appreciated. Thank you again, Jess xx
Hi all. I was diagnosed with Multiple Myloma December 2018, – it’s taken 20 months to get to a point where my Consultant feels he can put me forward for SCT. I am to be admitted 07 Sept. I’ve been told to expect to be in for 3 weeks, and only my husband will be allowed to visit, by appointment. Has anyone got any idea how often this may be, what was normal visiting like before COVID. Has anyone had a SCT during COVID pandemic – and I’d be grateful to read any further experiences – and for any tips on how get through it please. I’m really nervous if I’m honest.
Hi Jillspikesmum
When I had my SCT last year normal afternoon and evening visiting times applied, although i would have been too tired to have evening visitors.
My visitors were restricted to my husband and one or two visits from my adult son and daughter. It was important to me to have my husband around for the melphalan and then return of the cells, and was nice to have some company for the first week after SCT. However after this, when at the most neutropenic (usually for a few days between days 7 and 12) I wouldn’t have cared less, I felt quite guilty that he was visiting and I just needed to sleep. I didn’t feel dramatically ill, just so tired. I welcomed having clean clothes and snacks being brought in, but I wasn’t much company. I hope your SCT goes well, for me it wasn’t nearly as bad as I feared, and someone in my support group recently sailed through without any diarrhoea or sickness whatsoever. We have to be warned about possible side effects, but most of us get through with fairly minor ones. But do take pads in case of diarrhoea!!
Thank you all for the tips and experiences. My cells were collected by the wonderful team at UCLH on July 20, three months delayed due to CV, and I’m going in to UCLH tomorrow Sep 2 for the Melphalan, and cell transfusion on Thursday. It’s been very helpful to read all the posts here. Nobody has revealed their age, and it would have been interesting to read a report from someone of a similar age to me; I’m a pretty fit 69, heart and kidney tests passed ok, and my doc is very pleased with how I have responded to treatment so far (started VDT late October 2019, then 2 months “holding” Lenalidomide and Dexamethasone because of CV delaying the SCT) – the recent bone marrow result (Aug 18) was clear; I’m pretty confident, although it’s by far the most serious procedure I’ve ever had, so I’m slightly apprehensive. The team at UCLH are world-beating (if that phrase still holds credibility). Anyway, I’m determined to get through it because I’m dead keen to sail my dinghy again next season. Now I’m off to source a soft toothbrush, or some of those spongey things and some absorbent pads for the diarrhoea! (Only the small matter of restorative spinal surgery when I’m through this stage.)
My husband’s tips (having been through his transplant almost 3 years ago): chewing ice cubes while getting the chemo really helped prevent the mouth ulcers (that he was most worried about). Travel sickness wrist-bands and ginger biscuits helped counter the nausea. He said the test match on TV was a good distraction (!). And overall it wasn’t as bad as he had feared – and nothing like the worst case as portrayed by the consultant in advance, which I guess they have to do! Hope that helps.
It’s interesting how the side-effects vary. I’ve just arrived home (discharged, officially “engrafted” on Day 15). The fatigue is pretty intense. I’m assuming that this is related to low haemoglobin levels (neutrophils and white cells are doing great – way back to normal) so oxygen supply is limited – the slightest effort – getting up and walking to the loo and back makes me breathless. Need to wee frequently, so nights are a right pita because I can’t get a good solid sleep. I need to take the odd nap during the day. very lucky to have wife and a son fetching and carrying, and feeding me. Mucositis is/was not too much of an issue – 6 orange Calippos during the Melphalan infusion … don’t want another one! .. I recommend bringing your own plain ice in an insulated bag… one ulcer inside cheek was a nuisance for a while, and now my throat is a but tight and slightly uncomfortable still when swallowing.
As for the SCT itself, UCLH Ambi Care and then the hospital itself were phenomenal. Mind-blowingly world-class. They warned that I would feel “rough” from about Day 5. That started almost immediately – little appetite, just listlessness but not too intense. I availed myself of the exercise bike in Ambi Care to help keep mind and body fit. What an asset. And the big red chairs with footstools at that far end are v comfortable to while away the time reading; more comfortable than the Cotton Rooms leisure furniture – although I don’t wish to sound churlish … they are fantastic, great breakfasts, and a nice quiet lounge with different design of chairs and sofas – they just don’t wish you to put feet up on sofas, even w just socks on – I really needed to do that.
All was going pretty well. Appetite soon returned. But on Day 9 I awoke with a temp of 34.8 feeling a bit shaky, managed to eat fruit and yoghurt, got back to my room and was shaking all over. had a hot choc, and immediately threw everything up. Temp of 38.4. Phoned the hotline … come in immediately … packed my things and walked the few minutes to AmbiCare, who swung into action. By 1400 I was in a room in the hospital… IV antibiotics etc.. BP down to 68/50 temp hit 40 degrees … and the next day had the diagnosis – PICC line infection by Pseudomonas, that lives in the gut normally but escapes through the weakened gut wall and breeds in the nice slightly sticky surface of the plastic tube. They whipped it out, and continued the treatment… platelets infusions, oxygen, obs every hour 24 hrs for a day or so, and slowly the BP rose, hovering round 70/80 for some time, and temp fell back to the 36 low 37s. At one time I had the haematology doc, another doc, and two heavies, one from PERRT the other from ICU at the door of the bed – they just are a few steps ahead so that they are as prepared as much as possible should one need to admitted to ICU, such is the high level of care.
Hope that helps.
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