[jcr2468Participant]

Nikki

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 one leg and one arm!!!

Don’t get me started on the effects of Steroids – I felt fat too but once i stopped the weight came back off so don’t worry too much.

Keep Positive

Julie x

[jcr2468Participant]

Hi Nikki

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 slog.

Don’t google anything it will scare you to death!! Trust me when i say its not all bad, you are going to have good and bad days but as I was told you have your age and health which is a positive when fighting the disease.

I was treated at the QE in Birmingham and I have to say they are fantastic, they are really looking after me.

Try and stay positive. I will answer your questions as honestly as i can.

This is my work email so if you need me to help with anything else i will answer in the morning

 

Take Care and stay positive

Julie x

 

[jcr2468Participant]

Hi Nikki

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 best to take someone with you, at least then if you don’t take anything in the other person may do.

So ask away!!!

Julie

[jcr2468Participant]

Hi David

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 if the clinical route doesn’t work then they wont give you anything else they will always look after you.

It’s your choice and your choice alone don’t let anyone make the decision for you

Good Luck

Julie

[jcr2468Participant]

Hello Treakle

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 and was in remission until last year. I’ve not long finished Velcade treatment and for the last 3 months have been drug free.

There are so many drugs coming out all the time to treat Myeloma so you need to be Strong & positive for your Dad as I’m sure He will be with you.

I work full time, i did have time off during my treatment just because I was so tired all the time – i still am now but its something that I know I have to live with so i just try and get on with it.

Like Rebecca I go to all my consultations on my own because I don’t want to have to worry about what anyone else is feeling and can ask my doctor questions that I don’t want my family to know the answers to.

Be a support to your Dad but give him time to digest what is happening to Him. Keep in touch on the forum because there are so many positive stories which will help you come to terms with things

Regards

Julie

 

[jcr2468Participant]

Hi Nicki

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 if i’m going to catch anything then it is more than likely where a lot of people have been.

Hope Kevin is keeping well

 

Julie

[jcr2468Participant]

Hi Graeme

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

[jcr2468Participant]

Hi Nicki

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 was up and about.

I stayed in hospital for 15 days and then carried on my recovery at home. This was all 3 years ago, I relapsed earlier this year and had a few cycles of Velcade. I’m now drug free and my levels are at 1.9. hopefully they will stay low!

I hope Kevin stays well

Julie

 

[jcr2468Participant]

Hi Jeff

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

[jcr2468Participant]

Hi

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

[jcr2468Participant]

Hello Frances

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

[jcr2468Participant]

HiTina I think it is the steroids, I put on nearly 2 stone during my treatment but have lost just over a stone after coming off my steroids about 10 weeks ago.

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 eat healthilyand look after yourself

Julie

 

[jcr2468Participant]

Hi

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 your treatment

[jcr2468Participant]

Hi Grega

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 about a bit as it may help.

Hopefully she will start to feel better soon

Take Care

Julie

[jcr2468Participant]

Hi June

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 than I have done for a long time – The doctors were keen for me to have another SCT but this has now been put on hold to see how I get on.

I hope you manage OK on the Velcade but listen to your body and if you have to rest then do so.

Take Care

Julie

 

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