[legalParticipant]

Hi

A close relative was diagnosed with myeloma in April and is in complete remission after chemotherapy.

SHe is scheduled for SCT at Kings College Hospital (where she has received brilliant care to date) and I wanted to know about anyone’s experiences there. I am also keen to know about post SCT care. Would we need to organise a Macmillan nurse for day care? How long does recovery usually take? Are there things she won’t be able to do?

Any useful tips . Most appreciated.

 

 

[legalParticipant]

We will as a family take it in turns to stay overnight with her when she is out from hospital.

[PhilipandfionaParticipant]

Hi
I am sorry nobody has replied. I think your question is a bit broad. The thing with MM is that it is so individual, some sail through, some don’t.
All the places that do SCT seem to be good. And I wish your relative the best of luck.
Best advice: read all you can here in SCT experiences and ask the dictors. Be firm.

[legalParticipant]

Thanks Fiona.

[Ang287Participant]

Hi
My husband aged 56 had his stem cell transplant in February this year. When he came home from hospital he spent the first week upstairs so he was near the bathroom and didn’t have to manage the stairs at first. I was at home all of that first week. For the next 2 weeks I worked half days so I was still there to prepare meals for him and make sure he had his tablets and then after that he was on his own and managed fine. No nurses ever came to the house and no nurses were ever needed as I could be there.
Good luck for her treatment – my husband now in remission and doing well.
Angela

[janwParticipant]

Hi,

Going through the process of a stem cell transplant is quite different for every patient. Some individuals sail through the recovery period feeling a little weak or fatigued, where as other people find the recovery period to be quite slow before their energy returns. However, you are normally only released from hospital following a stem cell transplant when you blood results show that your immune system is recovering and that you are sufficiently well enough to go home. You just need to keep an eye on your temperature for any possible infections whilst your immunity is recovering and try to stay clear of anyone with a cold or infection.

I think you will have to see how your relative copes with the whole process and try make arrangements to provide the necessary support and help with daily tasks such as shopping, cooking, cleaning, ordering medicine/drugs, etc. Perhaps ensuring the fridge and cupboards are stocked with the basics of bread, eggs, milk, etc with some ready meals in the freezer. I know that I felt completely shattered for the first week after the stem cell transplant, sleeping for 20 hours a day with hardly any energy to talk, concentrate for any period or read/watch TV. It took me weeks until I could manage the stairs in the house due to fatigue. I could slowly shower/wash, but it took ages and left me exhausted. Even handling towels was heavy and difficult. I welcomed the help from my husband and family to provide a good supply of drinks and food when required whilst I slowly recovered. I did not eat much for several weeks, but having a choice of some simple food like yogurts, fruit, a variety of drinks, ice cream and light foods such as cheese or egg on toast were much appreciated. It took me a good three months before I was mobile for a few hours a day and able to carry out basic tasks. However, some myeloma patients are able to return to work three to six months after their transplant. We are all so very different.

I hope all goes well with your relative’s treatment.

Regards Jan

[simonParticipant]

hi,,Im 7 weeks after,,s.c.t,,,when I first came out of hospital I stayed with my dad for 3 days,then whent home,,i live on my own,im 53,,it wasn’t recommended I go home.but I did anyway…my neighbours got me milk bread etc,,I just slept a lot,,phoned people when I had the energy,,and managed hospital visits,ok/best I could..i was scared stiff before I had the s.c.t,,doctors telling me so much alarming information,,,good luck

[legalParticipant]

Thank you all.

[mrsgooseParticipant]

Hi I’m almost 7 weeks post 2nd SCT. My first was in 2008. I feel quite weak and shaky a lot of the time and don’t know if this is normal. I recovered in the summer the first time so I was able to get outside and do bits in the garden. I can’t face going out walking in the cold, though we have been to feed our local ducks 3 times.   I don’t know if it is my weakness or perhaps anti sickness drugs making me shaky. Has anyone else had this? I am much better than when I first came home but still find eating a chore . I can agree with most of what Jan Walker says.  I also had a DVT before I went in for transplant. I barley have the strength to put on and remove the compression socks. Thank goodness for my husband, he’s a star. Christmas is at my son’s, hope the turkey goes down well.  I have heard it takes longer to recover from 2nd SCT.

Happy Christmas All

Regards Margaret

 

 

[keithmtParticipant]

A key part of the SCT process (in many cases) is a high dose of chemotherapy (in my case Melphalan) and its this that kills off the cancer cells in the bone marrow. Unfortunately, this chemo also has a major effect on the entire digestive and immune systems and its this that can have a major effect on a person and take quite a while to climb out of.

My SCT was in April 2014 and although my immune system had recovered sufficiently to be released from the Royal Marsden after just 6 days, it took the best part of 2 months before I returned to some degree of normality. I felt extremely tired and had zero (and I mean zero) appetite for about a month.

Although I could probably have coped, I would not like to have gone through this without the care of my wife.

Having said all that, it sounds like your relative may be having treatment in a slightly different order if they have been confirmed as “in complete remission” before their SCT.

I hope all goes well for them. I should say that 8 months after my SCT I am also in C&E maleate remission and apart from my stamina and energy levels still recovering, I am leading a full and very happy life.

Keith

[alanjamesbyrneParticipant]

Hi all .i was diagnosed with myeloma 2 yrs ago ,I’ve had radiotherapy on my shoulder ,I am currently having chemopherpy,I’m on the 4th ,cycle of 4 ,next stage is SCT ,I’ve got to go in for tests in 3 weeks time ,ive also got to have a bone biopsie on my back ,which I am dreading ,I’ve already had two ,then we start SCT ,I’m lucky in some ways I live less than half a mile from the hospital ,got to have a 3 week stay in isolation while my immune system recovers from ,high dosage of chemo  ,some of what I read is a bit scary ,I know it’s for my own good so it’s got to be done  ,and i know it effects everybody differently ,doesn’t stop you worrying mind,I am 59 living in Southampton,I’ve been married nearly 42 yrs and my wife is my carrer ‘we have 3 sons ,who give me a lot of support ,went to mcmillians when I was first diagnosed ,but the women scared me ,started talking about dying ,I thought it’s way to early to talk about that ,and havnt been back since,I know it will kill me eventually but some people go on for years ,I am still pretty active and I have gotten through my chemo quite easily,it’s got easier as I went along ,worst bit is my taste buds every thing tastes terrible ,I will be glad when May gets here as most of treatment will have finished ,apart from tests to keep an eye on it ,oh well, onwards and upwards

[legalParticipant]

Hi Alan

Thanks for your post.

My close relative had radiotherapy on her back , braces for a while and the course of chemo. She was diagnosed earlier on this year after intense back aches (ironically works for a cancer charity).

She has just completed the high dose chemo and was in hospital for just under 3 weeks. For her the hardest part during her stay was the mucositis.  However, antibiotics seemed to help.

Shes been home for almost 2 weeks and seems to be doing ok.  She doesn’t have a partner so we decided to stay with her for a few nights initially which was all she wanted. She’s mobile but we help with shopping etc.  She does feel tired and rests when needed, but also balances it with gentle exercise by doing local walks.

They don’t let you out of hospital after the stem cell transplant until your bloods are at a safe level. At the moment we are ensuring precautions are taken to minimise the risk of infection. So if she goes for walks, she wraps up well and wears a face mask…we’ve complied with all the advice in the neutrophil booklet regarding food prep etc. She also hasent seen her grandchildren for a while which is hard.  As their immune systems are a lot lower (under 5) we don’t want to risk anything until she gets an outpatient appointment and gets an ok.

shes lost her hair which we were told would happen but is very difficult when it happens.

It all still seems very surreal.  It’s also very hard to know what to say etc when your loved one is experiencing this. However, I’m just trying to listen and be there .

I don’t know much as its a learning process but there are lots of positive stories out there of people living for over 10 years . Kathy Guisti set up her own myeloma organisation after being diagnosed 15 years ago and is doing really well.  Cheryl Boyce is another lady who travels regularly and is doing really well.

All the best.

[alanjamesbyrneParticipant]

Thank you LEGAL ,happy new year

[legalParticipant]

Happy New Year to you too.

[legalParticipant]

for those who have had SCT and have been discharged from hospital, how long is it roughly before you need to attend outpatient stem cell unit regular appointments ? My relative was discharged about 2 weeks ago.

[Author]

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