Just had stem cells put back.

Hi Jo100 ….. although I don’t have Myeloma I can appreciate the challenges you are having.

I had 2 Allograft (donor) Stem Cell Transplants the first in June 2014 with the second in Oct 2015.

The ‘everything tasting like dust’ thing or in my case everything tasting like sucking on a rusty penny is an unfortunate post SCT temporary issue……. but I did find that once my blood counts started to rise things improved…….. for me it took a good month.

As my SCT Specialist Nurse said to both my wife and I….. “the bottom line is at this point in time it’s nothing to do with food tasting anything like normal…… and as bad as it can get it’s all about getting fuel into your body and fuel is food…… and this brings energy”

So my wife was feeding me small but regular portions of high protein foods……. But the one thing I was doing was sucking on fresh pineapple that had been blended in a blender and then frozen in ice cube trays before I had any food…… this helped the taste thing.

Hi Jo100 its all still very fresh in my mind,     i love my food,  and like Thehighlander   says,     anything in your body is fuel towards  recovery   and i know the pineapple  trick worked for me also,    but the chopped up type  in small plastic containers,  is the enzyme in it that helps!          i  was really off my food,  and came very close to having   forced  nutrients to be put inside me!     i resisted,  the   protein shakes helped me,   the   strawberry one from the hospital nice, when chilled,   fresh  prepared fruits in tubs,      juice and smoothies,  tasted  like nothing but i know the goodness helped me,    i had murray mints to suck,   this helped also,  the lunch soups in hospital  tasted awful to me,  but i know they were good,  i could manage tuna sandwiches,  but not the crust,    i  took mouth washes   3 x per day.    its the toughest part of the  ordeal and treatment  ,  but you will come out of it !       not disclosed before on here,  but for your benefit,  i have a very severe hearing loss  it got worse due to MM and chemo,    now just had a  Cochlear implant  operation  ( no  device yet)    why do i tell you this,      we all get into a better spot  and i am dealing with things prior to MM,    to help live a full life,  we deserve it,          you are not alone  on this journey Jo100,   best love and wishes from Kevin  AKA  Vespa,   come back and inspire us with your stories of victory  !!

Hi, just like Vespa, all food tasted of nothing, I couldn't eat or drink for 11 days!  Just the smell of food made me vomit.  I couldn't take my medication  because  I brought it back up.  Had to have all medication by intravenous drips plus saline drips for the dehydration.   The dietician kept coming to see me but I couldn't stomach any food or drink.  After 11 days I had a sip of tea and then a cup.  I gradually began to eat very small portion even tho it was tasteless and then went from strength to strength.  I too had mouth wash 3 times a day which helped.  2 years on and I still can't taste some things properly but I came thru it all. It's not a nice journey but it gives you your life back. We are all here to help so just reach out.  Love from a fellow survivor!

To Highlander Vesper and Bunky, thanks so much. Your advice is just brilliant. Just found out that cut up apple actually tastes like Apple.  I’m eating small bits of protein like ham and cheese. Tomorrow I’m moving from ambulatory to inpatient and I’m really not looking forward to it. I’m used to my own space in fridge especially outdoor space. I’m going to  beg them for an extra day at home. We’ll see. I know people have been through it before, but to hear your voice is really did help me thank you so much bye Jo 

Hi Jo100, I've been following your story and just wanted to wish you well. Just to fill you in I had a SCT April 23 . I did not have the option of ambulatory care and was in hosp for just un der the month . I'm in remission now and enjoying life , walking , cooking driving etc . Life is good .So glad I have had the care and treatment .

I can totally understand you don't want to go into hosp but it will only be for a short time in the greater scheme of things .I know this sounds flippant but lean on the staff who can support you they have so much to offer and have lots of tricks up their sleeves to help you feel more comfortable .Think of how far you have come through your treatment so far .. this too will pass .Best wishes Sue xx 

Hi Sue I just reread your message and it helped. Having a low day. You made a difference thank you 

This was so enlightening for me to read , as I have not started my sct yet. Such good hints and tips and although maybe I won’t have these things it certainly helps you go into it more prepared 

I truly hope that you start feeling better soon and don’t forget you are on the next part of your recovery. You can do this but thank you for helping me along the way

Teresa x

Hi , my name is Mal.I had stem cell trans 15 months ago , it is hard but worth it.I am slowly getting stronger but its a long haul.I was in for 21 days and glad to get out.I have down days and apart from close family nobody really supports, do other people find this?.I hope this has worked because I dont go on this and dont know what I am doing!

Regards , Mal

Thanks, Mal. It’s really good to hear other people successful stories when you’re stuck in isolation   I don’t think other people really understand

Isolation ward was the tough part.   I forced myself to get up and try shower.   That was hard. Sat on a chair!      Get changed.    Look longingly at my bed   Then lie down again   !     The fight s the taste of your future.       It is 100% worth it   !!       Bouncing my grand daughter on my knee today.   ️.