Don’t panic!!!

Before my transplant i had to inject myself every day to “grow” my stem cells ready for harvesting. If i remember correctly i injected for about a month and then spent nearly all day in hospital having them removed ready for transplant.

My hair fell out but my eyebrows & eyelashes didn’t – I think I only lost the hair on…[Read more]

I’m coming up to 47 so was the same age as you when diagnosed. I went to the Doctors with a numb bum and 4 weeks later was told I had Myeloma!!

I had a Stem Cell transplant in sept 2011 – I did lose my hair but was surprised how quickly it grew back. I think initially i had 7 cycles of chemo before my SCT so it is a bit of a…[Read more]

I don’t think your head “will ever be the same again”, I was diagnosed back in Jan 2011 and my head still “whirls” from time to time.

We all have different experiences when dealing with our Myeloma but i’m sure if you ask the question some one on the site will be able to answer.

I found that for the first few appointments its always…[Read more]

I don’t think it is to save the NHS money – I was on the Myeloma XI trial back in 2011 when I was diagnosed. I stayed on in for about 18months and they monitored me every 4 weeks. They took me off it when I relapsed and then they gave me Velcade which worked really well. I’m now drug free for the first time in 3 years.

Don’t think that…[Read more]

I’m the same age as your Dad and was diagnosed Jan 2011, since diagnosis i’ve been to Portugal, Cyprus and a cruise so as others have said life does go on.

Don’t get me wrong its going to take a while (if ever) for your Dad to get his head round the illness but unfortunately it just becomes a way of life. I had my SCT in Sept 2011…[Read more]

Sorry I haven’t replied but i’ve been sunning myself in Portugal! Don’t get too obsessed with cleanliness, i have just carried on as normal. I have had the odd cold but then don’t we all, if we worried about bugs or infections i don’t think we would go anywhere or do anything.

I do have issues with going into swimming pools as I think…[Read more]

Poor you not pleasant – I had Shingles when I was on the Thalidomide, worst pain I’ve ever had all along my right shoulder.

The hospital will sort you out

Julie

The fact that Kevin is still feeling so well is very much a positive. Obviously everyone is different but my experience of SCT was good. I felt well all the way through, I had a bit of sickness after the Melphalan but the nurses helped control that for me. I was very tired for a few days (probably when I was Neutropenic) but otherwise I…[Read more]

Thanks for this, I think I will get my calcium levels checked out. I’m working full time again so this may also be having an effect.

I think i need a holiday!

Julie

Does anyone have any ideas?

Julie

I was very sick when i was given Melphalan before receiving my stem cells. However as I was in hospital for the whole process it was easier for the nurses to give me anti sickness injections.

I would ring the hospital ward and ask about some stronger anti sickness to get him through this

Hope he is feeling better soon

Julie

Sorry to hear your Mom is having problems – I’m sorry I can’t help but i really suggest she goes back to Her doctor (maybe you could go with her) and tell them she is finding life hard.

I wish her all the best

Julie x

I must admit I did get really depressed about the weight gain but all i can say is keep positive, finish your treatment and then worry about losing the weight.

Fad diets don’t work, just…[Read more]

I had the same problem but found that the only things I could taste was “fruity” stuff. My specialist nurse suggested eating pinapple before a meal, its worth giving it a try but as with anything associated with Myeloma everyone is different.

I finish Velcade and Dex about 2 months ago and my taste has now returned to normal.

Good luck with…[Read more]

I can’t answer specifically as I can’t remember the last time my bones didn’t ache! SCT doesn’t repair any damage to the bones so i’ve been told so therefore its not that the SCT hasn’t worked its just that the bones may be beyond repair.

Spending long periods of time in bed would make you ache so see if your wife can get up and move…[Read more]

I had my SCT in Sept 2011 and relapsed July last year. I went onto Velcade and Dex and coped really well.I had 7 cycles and had no real side effects, even though I don’t feel myself when i’m taking steroids and my partner would probably agree!. I’m now back in “remission” and have been drug free for a couple of months now. I feel better t…[Read more]

I also had to have a central line due to naf veins, it wasn’t pleasant but is a whole lot easier than having needles stuck into you. The harvesting part is easy, you just sit/lie back and relax for a few hours whilst the machine does all the work!

I was terrified about my Stem Cell transplant which i had Sept 2011, it wasn’t easy but i…[Read more]

Firstly Congratulations on your “nearly” 10 years. I was also diagnosed at 44 nearly 4years ago, and had a Stem Cell transplant 3 years ago. Unfortunately my Brother wasn’t a match. Everything was progressing well until earlier this year when I had a relapse. After Velcade treatment I am now back in remission and my levels are the…[Read more]