[ScottyParticipant]

Hi – or if you don't get through to Phil for any reason, give me a shout on scotty@brandmojo.co.uk (this is Scotty's new email address for anyone else who picks up this thread and is wondering why I'm a bit slow replying to the old one. Either Phil or I need your email address so we can invite you into the Under 50s group)

Cheers Scotty.

[willjames2Participant]

Hi Kay,

I'm still all very knew to this having only just been diagnosed about a month ago so I do more watching and reading than offering any actual advice because I don't have the experience as such of yet.

That said, sorry to hear you have to join us but I'm glad your here. The people are great and the replies I had from my initial posts really help and keep your spirits up!

I even met Wendy Duffield in Clinic recently. She recognised me from my photo, came over and introduced herself and we had a good chat for a while until I whisked away to see the Doctor!

From my limited experience it seems that there a 'good bunch' on the Under 50's Forum so you'll be in safe hands and given both advice, help and straight answers if req'd to questions you may have.

kind Regards

Scott 🙂

[HarmonyParticipant]

Hi Scotty,
I am a 40 year old married mother of a seven and ten year old. I was diagnosed with asymptomatic myeloma 6 weeks ago. I am still waiting for someone to wake me up and tell me it's a bad dream. I only went for a routine blood test. At worst, I expected to be told that I'm anaemic and need iron tablets. Still wondering if there's been a mistake- despite 4 blood tests and a bone marrow biopsy! Have joined the other discussion forum and found it very reassuring.

[ScottyParticipant]

Hi Harmony

Always sorry to hear of another member to this group, but like everyone else in the Under 50's band hit with the news of myeloma in any of its forms, you are of course most welcome to join! For anyone else finding this thread, the best email to get me on is scotty@brandmojo.co.uk as I rarely use my old work address (the Added Value one)and I hate the thought of anyone having to wait for some support in what are pretty dark hours.

As Tom says, onwards and upwards, cheers to all. Scotty x

[IvesParticipant]

Hi

[chris-franksParticipant]

hi chris here from Manchester, I was diagnosed with smm on new years eve im 47 and fit as a fiddle ?

im a type one diabetic on insulin as well. smm was picked up on routine blood test.

how do I join your club….

[PhilKellyParticipant]

Hi Chris… drop me a note at

Phil.kelly2@btinternet.com

and I will send you the link,

Cheers,

Phil

[pepita-louiseParticipant]

Hi there, My name is Pepita and was diagnosed on 20th Dec 2013 aged 37. I have had a successful chemo treatment on Revlimid and am now (yesterday actually!)Started the process to prepare for harvesting stem cells for my impending transplant. I have to admit, I am terrified!! Central line being “installed” tomorrow due to naf veins!

After my first ever treatment of IV chemo (Cyclophosphamide) I’m not feeling too well so now know (roughly!) what I’ll be facing in a few weeks. In my case, there has been the discussion of a bone marrow transplant due to my age, but I’ll get through this bit first!!!

Do you have any advice at all for comfort duting the process? (apart from boredom beating items!)

[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

[bev2504Participant]

Hi All,

Where to start?! I was diagnosed in December 2013 with MM and I’m 43. I have been on the ‘watch and wait’ list with the hospital since being diagnosed, with monthly visits to the hospital. To be honest I have been really grateful with this approach as it’s taken me the 12 months to really come to terms with the diagnosis, but now i can really tell my health is deteriorating. I’m now at a point where I need chemotherapy and will be starting this on the 15th January in the myeloma XI trial. I am still working full time, as this really helps to keep me somewhat sane!

I think my biggest concern is having my children watch me go through it. My son is 18 and due to go off to uni in September, and has already started to talk about deferring his place, which is something i really don’t want him to do. My daughter will be 16 in March, with everything being a teenager entails and my husband is insisting on pretending everything is ‘normal’ as his way of coping with things! So a catalog of feelings and emotions to deal with, as well as my mum watching me (her baby) going through this.

It’s bizarre, when you’re in it, it’s everyone around you that you’re concerned about, or is this just me??

I’m trying to prepare myself for the next leg of this journey and some days feel i am, and other days not so much. I really want to continue to work, to hold onto some normality and i’m fortunate enough to work for a charity who really look after their staff and will do whatever i feel is best. It’s been good reading through others’ experiences, i didn’t think it would help initially, but it has, so thank you.

[pepita-louiseParticipant]

Hi Bev,

You’re right! You do end up worrying about everyone else!!! It does seem to hit family hard too – 0they are more worried about he condition than what you are!!!

I continued working for a few months then sadly had to stop after i started my Chemo. I think it all depends on how it affects you. Your immune system (already low from the Myeloma) gets impacted from the chemo so infection risk is higher. There are things you have to keep an eye on (you will be told by your team).

I am on the XI trial – had my chemo and stem cell transplant and all is good at the moment. I think your family will accept it all.

Be good and careful – keep smiling. Look for the UK support group on FB – they are great and vey helpful.

[bev2504Participant]

Hi Pepita

Thank you for the reply. I’m so glad you’re feeling relatively well after your stem cell transplant. My husband keeps saying ‘take it one day at a time’, so i’m trying to do that….very hard to do, as I’ve always been a planner!

I’ll have to just wait and see how the chemo affects me and remind myself (often) that it’s ok to not be ok!

I’m on the UK support group on Facebook, thank you.

I’ll let you know how it goes.

Take care

Beverley x

• This reply was modified 9 years, 9 months ago by  bev2504.

[charlie67Participant]

Hi my name is Charlie (the female variety!). I was diagnosed with multiple myeloma on Jan 20 and started chemo on the 30th.  I’m 47 with 3 young children and a dog! All was going well for my first three weeks of chemo, my weekly cocktail on a Friday is an injection of Velcade, chemo pills and dexamethson.  I was feeling well, no side effects, a few disturbed nights but nothing that didn’t mean I couldnt get on with the daily routine of life.  Then on Sunday, out of nowhere I was taken down by an infection, my temperature spiked and it was straight to hosp where I stayed for 5 days. I’m out now and feeling better each day. But I guess it was the first tangible effects of this disease, or more the treatment that brought things home to me, and how much more vulnerable I am and it was quite shocking.  My consultant is saying to expect 6/8 months of chemo and then a stem cell transplant. This is still very new, and myself and my kids are still getting our heads round it, but my recent stay in hosp has started to make it feel more real and tangible.

Charlie

[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

[charlie67Participant]

Hi Nicky, good luck today, I’ll be thinking of you. My sct is some months off, but when I think about it does frighten me.  It’s great to be connected with people who are in the same position.

Charlie x

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