[nickyx1Participant]

Hi tony

i remember the worst week of my life well too  it was March 31st 2014 I was 44 at the time and have 2 boys aged 15 & 12. Me and my husband did not tell the boys for 6 months as eldest had GCSEs and his prom. It was an horrendous time. All I can say is after the anitial shock things will get easier for you and it will not seem so scary. I have just hadSCT in February and although it was tough going it is doable. All the best for your wife’s results. I will be thinking of you all .

nicky x

[nickyx1Participant]

Hi matt

thanks for your kind message.  Things have all gone well but am suffering with sickness at the moment.

Feeling slightly better today. Hope all is well for you x

Nicky

 

[nickyx1Participant]

Thanks charlie I’ll give it my best shot. All the best with your chemo x I’ll let you know how it goes.

nicky x

[nickyx1Participant]

Hi charlie I’m sorry to hear of your recent diagnosis. My name is Nicky (also female) I’m 45 (last week) I had 6 rounds. Of chemo and am in hospital tomorrow for my high dose chemo and sct. I have 2 boys age 16 and 13.and a dog.  I found it really hard and frightening when first diagnosed but kids are very resilient and they seem to take it all in their stride. I find it best to be as honest as you can as it seems to make them less anxious about it all. Sorry to hear about your infection what I do is have surgical masks handy and if the kids or anyone feel unwell I wear one to try and protect myself it might look stupid but I think it has helped. Try not to worry too much about getting another infection just remember as soon as you don’t feel too good get to the doctor or ring the helpline. I’m really frightened about tomorrow but am trying to put on a brave face for everyone which sometimes doesn’t help all we can do is take one day at a time. It’s nice to speak to someone of similar age,good luck with everything

nicky

[nickyx1Participant]

Hi Angela and graham

i am really happy to hear how your husbands transplant went and to hear such good news about the years remission.

hope you have a really good holiday you deserve it having coped with all this treatment the past year 🙂 it makes me feel more positive about my transplant and chemo which is on the 23rd of feb,they delayed mine for a week so I could enjoy my birthday on the 17th. It really helps to know that things do improve and hopefully I will soon be jetting off with my boys age 16 and 13 next year. I wish you a great holiday and many more years of remission.

from Nicky x

[nickyx1Participant]

Hi alan

thats exactly what I’ve had. I had medium dose of chemo  then had to have injections for a week to make stem cells spill out into blood which were then harvested. I don’t know if you have hair but it’s that lot of chemo that made mine start falling out. I asked my niece who is a hairdresses to clip mine off on Monday as it was just sliding off. I felt better afterwards as I had taken control over what was happening.I have an appointment to go on nebuliser to help prevent pneumonia on weds. Then heavy dose chemo on 23rd,I am crapping myself!!!!!!!!!!!! Good luck for Monday I will be thinking of you. All the best

nicky

[nickyx1Participant]

Hi Alan

like yourself I’m booked in to have my stem cell transplant on the 23rd of February. I am getting really nervous about it I’ve been told that I will be in hospital to have the intense chemo and then the next day I have my stem cells back. If the next day I am ok with no temperature I can go home . It is worrying as by the second week I will have basically no immune system. I hope you get on ok having your line fitted and having your stem cells taken,don’t worry about the injections too much I found them really easy to do and didn’t get too much bone pain,but still got enough to have 4 transplants if I need them. All the best and let me know how you got on with your treatment 🙂

nicky X

[nickyx1Participant]

Hi there,my name is Nicky and I am 44. I was diagnosed in March 2014 with mm. I am on the myeloma X1 trial. I have had 7 months of cyclophosphamide,lanolidomide and dex which has brought my para protein level from 29.5 down to 4.2. I wasn’t on any meds over xmas so I made the most of that

[nickyx1Participant]

Just like to say hi, this is my first post on here. I was diagnosed in March 2014 after months of going up to doctors and a & e . Eventually had an MRI which confirmed a fractured sternum but also found a tumour behind the fracture. A biopsy confirmed mm and para proteins of 29.5. I have had 7 rounds of cyclophosphamide with lanolidomide and dex.levels have dropped and am now awaiting sct. Had line fitted yesterday which wasn’t as bad as I thought but an quite sore! Have got conditioning chemo Monday and can’t say I’m looking forward to that! Like you I am ony 44. I hope your treatment has gone well for you.

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