This topic contains 13 replies, has 6 voices, and was last updated by 
tom 12 years ago.
Wanted to ask people who have been through it what their thoughts are on Stem cell treatment.
We have heard what the doctors say but to be fair they are not the ones who have lived it. So my mum who started CDT in July is now facing making the choice of if she should have the stem cell treatment and wants to know what it is like in realistic terms. What the side affects are and how bad it can get and if it is worth it. IS it something she can cope with as she was already suffering with depression after losing her hubby in October 2011 and then finding missing one test was the one she shouldn't have skipped.
All help and advice would be gratefully received
Thanks
Sarah
Hi Sarah
Thats a difficult one as all seem to react differently to it?
Many seem quite bright have a few rough days during it then are typing progress while recovering in hospital.
If you search here sct or asct you will find posts some blogged during the experience.
I had mine May 3 rd this year and its only the past 3 weeks i had any form of stamina ! I still need to sleep in the day but I had had a year of treatment pre mine so was already worn out and im a single mum of daughter of 11.
I was in hospital a month …. but im still in remission ,i delayed transplant until relapse and got only 11 months off treatment,so think the transplant will seem better if i get a decent remission from it.
The side affects of stem cell transplant ,sore mouth(mucositis)I only got 1 small sore but sucked ice pre the melphalan and after,fever /infection,diarrhoea for some weeks,nausea and vomiting(theyre great o giving anti sickness meds but I had "morning sickness" could not keep anything down and smells were amplified 100%!,fatigue/weakness
I hate putting the negatives …….. but its a hard time for some like me but others manage fine .
don't know if ive helped or hindered just wanted you to see my negative and the hopefully positive ones that others will post .
some people have blogged their day by day accounts whilst undergoing asct ,try google
best wishes
Sue
Hi Sarah
Totally personal decision. Very scary times, its not pleasant, I took 11 months to recover to a real sense of 'wellness' but I'm pretty good now. 15 months since SCT, in complete remission, on Revlimid maintenance and back to work full time. Recent posts by Vikki and Chris explain the process very well, and Sue describes other things to expect. You don't say how old your mum is, where she will be treated or if she has other health problems. These are relevant considerations and the whole 'cancer' thing, plays havoc with your mind too. I regard it as a large concrete block which accompanies me everywhere. In order to do anything I have to climb over it or go round it to do stuff. If people ignore it too much I get annoyed and if they talk about it too much I get annoyed as well. More work needed here i think. I'm trying not to let it intrude but it is part of my life now. However I do more things now to distract myself and tire myself out, so life is ok.
So ….. clearly still have issues about it and I am an optimist who doesn't really get depressed. I hope she chooses the most appropriate route for herself. The important thing is not to regret whatever decision she makes and to support her throughout it even when it gets really rough. We need our supporters sooooooo much.
Love Helen
Firstly thanks Sue and Helen for you honest replies. Please don't worry that you have told me the negatives. I am a very down to earth person who deals far better with facts than a make believe version. My first and foremost intention is to work out how best i can support Mum if she does decide to go through with the SCT and what we will be up against.
Mum is 62 and retired last year to nurse her 2nd husband who was diagnosed with melanoma 3 months after they married and sadly passed away in October last year in their first year of marriage. She is being treated at two hospitals with main treatment at QA and the stem cell to be done at Southampton General.
Mum is very tired already and suffers from depression since my dad passed away 7 years ago which has kicked in with a vengeance having taken the plunge to love again and once again lose a soul mate. On top of this the very recent trauma of nursing her husband through his cancer is very fresh in her mind and takes a big toll on how she views what she is going through now.
Just wonder if she has the strength to go through what seems such an intensive treatment especially when I feel she is doing it because she feels she has to for myself and the rest of the family rather than being what she really wants.
Also I know that her siblings have withdrawn from her and seem unable to even phone to see how she is doing which is hard. I know people find it hard to know what to say but can not get my head around the mentality of not being there when someone needs you to be so much.
I know mum struggles with the CDT and the terrible mood swings it seems to give her. And my sister and I have noticed that at times she is unreasonable and almost spoiling for a good row. A lot of tongue biting goes on and having dealt with cancer when i was 27 have a kind of understanding how scary it is and how alone you can feel.
Thanks again for you honest replies.
Love Sarah
Hi Sarah
I can only give you the view of the carer ,I am 63 and Slim my husband is in remission after 2 years and a SCT.
From they start of having to make a decision to have a SCT,I looked at everything,then told my husband the facts,and told him he must decide for himself,if any thing had gone wrong,I would never forgive myself for pushing for it.:-S His life his decision !!!!!
Your mum does not need people in her life,who cannot be bothered to pick up the phone,we all have,someone in the family like that.We are a small compact unit,and this is all we need,i am lucky I have 1 or 2 good friends,both have lost the husbands to Cancer,so that speaks for it,s self.
Either way you mum goes,it,s all about buying time,and it is always there,when is it going to come back!!!!,at the moment,I have locked it in a box and thrown away the key,we are off to NZ on Sunday,and we intend to live life to the full.When we come back it will be bloods trials and consultants.Then planning what to do for another 2 months.
SCT in my mind is a wonderful thing,at the time Slim said never again,now he says I do not know if they would offer it to me again,!!!!if it came back,people are having more than one,and the younger one,s are having back to back SCT.
I do not know if this helps,but it is the view of a carer.Eve
Hi Sarah and Mum
A warm welcome to the forum, get comfy and ask away.
First I am ???? 57 and was told i had MM in Jan 2009 done the CTD (that made me go on sick) had the SCT in December 2009, was in Hospital 16 days but 5 of those were lost in sleep :-0
Now I cant give you advice on what yous Mum should do all I can say is that if I came out of remission and was asked if I would do the same treatment my answer would be a great big YES 😀 , dont get me wrong Sarah it aint an easy ride but its a dooable 😎 and would I tell my own Mom or Dad the same that would be a yes.
All the treatment I had since 2009 was Pain free cept two things and that was the BMB and when I had the GCSF growth injections for that I had intermittant pain for about three days 🙁 but with that the saying is No Pain No Gain.
Good Luck in the decision to say yes or no, but what treatment would your Mum have if she said NO to the SCT? as all the treatments for this MM has its problems?
Love Tom "Onwards and Upwards" xxx
Hi Tom,
Well Tom,you should ask yourself how does it compare with child birth,you do forget about the bad things and look at all the good things that come out of it .LOL Love Eve
Lol Eve
Well I have to say with all our Kids (three handsome Men now) I got Morning sickness with each one so I knew the young bride was pregnant 😀
and you are corect I soon forgot about that.
My Glass is always half full so it all works for me 😎
Love Iccle ole Me "Onwards and upwards" xxx
Firstly thanks for the lovely warm welcome i have already received. Its like all of a sudden you are talking and people understand which is not something we have come across too much so far so a HUGE thanks for all thos that have taken the trouble to reply so far.
Can I ask if those of you that have had the SCT needed someone at home to care for them for any length of time when returning home from hospital as Mum currently lives alone and will need to make arrangements for her to come live with me if this is the case.
And as for comparing it to child birth I shall keep that one to myself as mum was in labour 72 hours with me and I was not at all popular with her lol
thanks
Love Sarah
Dear Sarah
I had my SCT last Oct- in hospital about 3 weeks and now back at work full time- only on monthly zometa infusions. I too am on my own (I'm 53 now) and my Mum came to look after me for the 1st week, then I had friends popping in to do shopping for me and drop off cooked meals! One wonderful neighbour used to come in every morning for the first 2-3 weeks and bring me a cup of tea in bed!! The 1st 4-6 weeks you do need to be really careful and so having someone help and making sure you are fed and watered properly is important especially if you live alone.
Good luck!
Liz
Thanks for the reply Liz
Glad to hear you are doing well and long may it continue!
Any advice on what questions we should be asking before making a decision about if it is right for mum?
Thanks
Love Sarah
Dear Sarah
as Helen says- it is a totally personal decision. For me I felt it would give me the best option for a long remission. Your Mum needs to talk to her consultant about the options based on her health and responsiveness to treatment so far. Your Mum can wait til CDT treatment is over before finally deciding which route to follow- the dex is certainly responsible for big mood swings. The treatment (SCT) is tough- but I would do it again if necessary.
Is there anything you can do to get other members of family to rally round? Knowing she has the support of family and friends will make any decision so much easier.
Take care, LIz
Hi Liz and thanks
Currently compiling a list of questions to ask as focus is a nightmare and always coming away having forgotten to ask something. My sister and i are there for mum for anything she needs but sadly mums own sisters and brothers seem to have almost forgotten about her. No phone calls no contact and its like she has become invisible overnight. We lost a lot of old family friends when my dad died 7 years ago mainly I suspect because people don't want to be touched by death at a relatively young age and I think the same goes for cancer. Its almost like if you pretend it doesn't exist and never discuss it then its not real. Seems like madness to me but then I run a block of retirement flats so have learnt a healthy respect for death and know the true benefits of facing any illness face on and fighting and of providing support at the scariest point of a p[persons life. Also I had cancer at 27 and had to have a hysterectomy too so have some experience. Mum has a few very good friends but all quite some distance away but provide great phone support for her. We deal with it and move on but just wish people would see what they do when they turn away. Don't care for myself but mum needs all the support she can get
Love Sarah
Hi Sarah and Mum
As for needing someone at home after my SCT ? I asked my young bride (Elaine) and she says that she went to work but left me a flask of coffee and a pack up (just like work lol) after feeding me breakfast and said i stayed in bed till she got home for the first week and she also said that the first time i went out was Xmas Eve (8 days since leaving hospital)
The reason I say Elaine told me is that I cant remember (just like childbirth lol) am sure it will be better for your mum to have some one with her for a month or so.
Take Care you all
Love tom "Onwards and upwards" xx
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