[sparksParticipant]

Good Afternoon All,

I am a 44 year old male living and working in London. I was diagnosed with MM in Oct 2021 and started my treatment (VRD) back in Nov 2021. I have achieved a Very Good Partial Response (VGRP) to date and going for an SCT in early June 2022 at Kings College. I believe I am classed as “High Risk” due to gain in 1Q ( three copies).

I must admit the first week after my diagnosis was a very difficult period in my entire life, especially with young family. However; I managed to kick myself and remained positive to date for the sake of my two young boys. I also consider myself lucky/privileged to have my treatment privately at home; which made a lot of difference to me personally.

I would like some feedback from you all on the following:

1) SCT experience at Kings College and what to take to the hospital during SCT process;
2) Anyone took Ambulatory path at Kings College? if so; your experiences please?
2) Did you manage hospital food during your 3 week stay? Are you allowed home cooked food?
3) Similar high risk cytogenetics (.i.e. 1q gain) and your experiences with your treatment so far;
4) Any suggestions before I go into SCT

Thank you all
Best Wishes
Sparks

[mulberryParticipant]

Hi Sparks, welcome to the forum. You may be looking too specifically for other myeloma patients who have recent experience of SCT at Kings College here. You may find your local support group knows more about Kings. However for the most part there doesn’t seem to be great variation between transplant centres so more general information may be helpful to you.
I had an SCT 3 years ago, pre pandemic so out of date, but headed in like you with VGPR to induction and with CR within 100 days, which I hope is your outcome too. Now I could ‘almmost’ forget that I have myeloma for the time being.
The most important advice that I had for SCT were:
-to suck, chew on and hold in your mouth as much ice or ice lollies as possible for 30 minutes before, during and 30 minutes after the melphalan infusion, thereby protecting stem cells in your mouth and throat in an attempt to avoid mucositis. Mouth sores are one of the most miserable side effects of SCT.
– to get showered and dressed every day, however hard that felt, and to keep exercising even if that meant walking around the room. (That’ll be easier on ambulatory care!)
– even if you don’t get mucositis, your taste buds are likely to go haywire and you may fancy things you would not normally eat, and vice versa. Home cooked food was allowed where I was- the important thing was that it was cooked. SCT units usually have freezers and microwaves available for patients food, the units don’t always tell patients, so it’s worth asking.
– I found eating little & often helped avoid nausea getting hold. The hospital routine was to wake patients early with a cup of tea, but for breakfast to be some hours later, by which time for me nausea had started. However if I ate something (a portion of cheese for some reason) it avoided the nausea starting in the first place.
– when in hospital, the routine monitoring every couple of hours, night and day, prevented solid sleep, so I dozed more than anticipated, and didn’t have time to get bored. My concentration was pretty poor so much of what I took in to while away the hours remained in my suitcase.
– take in the softest loo rolls you can, close fitting underpants and some incontinence pads in case you need them. Diarrhoea seems almost inevitable.
I wish you well during your SCT, and subsequently a long period of stability where you can concentrate on family life rather than treatment.

[kh0305Moderator]

Hi Sparks,

My dad had his SCT back in 2013 so, whilst it was a long while ago, my advise echoes that of Mulberry. We found very much the same, that the ice sucking is not the most pleasant at the time but well worth it to avoid the sores. Dad moaned like crazy but got way without any sores so that was fantastic.
Dad’s hospital also had a fridge available for use though he mainly stuck to hospital food but definitely worth finding out what food storage/prep facilities are available to you as you won’t always fancy what is on offer so having a few bits on stand by helps!
Good luck with it all and hopefully it wont be too long until you are back to life as near normal as possible x

[sparksParticipant]

Thanks for your valuable feedback/views – Mulberry and Kh0305

[sparksParticipant]

Dear All,

Thank you all for your wishes.

I am writing this from my hospital bed. Today is Day 7. I am doing reasonably well.
My issues so far were mild diarrhea, taste buds not that great, and loss of appetite. However; I am managing to eat and drink to keep my energy levels. My neutrophils are Zero today. Just waiting to see an increase in neutrophils; which could happen in a week’s time or early.

One thing helped me in this journey so far is having a strong and positive mind. At the end of the day, it’s all a mind game!!

Home-cooked food also helps me in my recovery journey.

I kept myself busy by working (informally) through this period to keep my mind occupied.

I would encourage everyone who is considering ASCT to go ahead after you have discussed pros and cons with your medical team.

Best Wishes

[mulberryParticipant]

Thank you for updating us Sparks, and it’s good to hear that you (like me) are having a relatively straightforward experience.
On day 12 I woke up knowing that I felt a little better, that total exhaustion that is felt from day 9 had gone, and hour by hour I could literally feel myself getting better, so that by early afternoon I was euphoric. Even though I ended up with a readmission for a few days, I knew the hurdle was cleared. I hope your neutrophils return soon and you will be home shortly.

[kh0305Moderator]

Hi Sparks,
Great to read that the SCT has gone ok and you are keeping positive and not having too many side effects. Hope that the side effects start to ease off soon and its not too long before your neutrophils are back where they need to be.
Hopefully you will be back home soon xx

[jo3016Participant]

Hi
My husband has 1q gain he had 6 VTD treatments followed by stem cell transplant . After a tough time he’s finally got results CR he’s now been offered len as maintenance but has been warned he wont be able to have len further down the line . Consultant has given us a few days to make his mind up . All very confusing .
Hope your recovering well from your stem cell ?
Jo

[mulberryParticipant]

Hi Jo
I have been taking lenalidomide as maintenance since I had my SCT. I don’t have high risk genetics, but it makes sense to keep myeloma at bay for as long as possible. I won’t be able to use lenalidomide later, but there are already new drugs available on NHS since I started lenalidomide maintenance over 3 years ago, and I’m hoping that there will be even more effective treatments available by the time I need them.
Maintenance does extend progression free survival (myeloma XI trial results) and although overall survival differences are pretty difficult to assess in these days of so many different treatments and changing protocols, I personally feel it has benefited me psychologically to have maintenance; I have done all I can to keep the beast at bay. I am surprised that your husband’s doctor sounds like he is sitting on the fence. Have you thought about getting a second opinion?
Best wishes, Jane.

[kh0305Moderator]

Hi Jo,
My dad had Lenalidomide as maintenance following his SCT and is currently receiving it as part of his drug combo for his third round treatment and he’s not had any particular issues/side effects using lenalidomide either time. As Jane says, things are moving on all the time and so many new meds are becoming available so no doubt there will be something even better available soon.
I definitely think that the maintenance treatment benefitted dad and he had 7 years before relapse. It seems you have been put under a bit of time pressure to make the decision which seems unfair but if your consultant believes it to be the right treatment for you then it is probably worth seriously considering unless you are particularly worried about going along that route.
Wishing your husband all the best whichever decision you make xx

[Author]

Posts