[VickiParticipant]

Hi all

I’ve caught up with this thread and there seems to have been a lot of high feeling at the start. Treatment and choices is always something that will need to be made by nhs and of course what we make as part of the journey. In our circumstances I’d like every penny to be spent of treatment and cure for myeloma, and find it now. However there isn’t enough money to go around. Hard but true. I’d settle for someone saying treatment makes this condition treatable for life, with a good quality of life. It’s the uncertainty and worry about what if that I find difficult as the supporter! Colin will have different views to me I expect as he is the one with the condition and the t12 fracture!

Sometimes it feels dark and lonely and other times positive. One thing that is common, no two people are the same so treatment and outcomes remain so. What ifs will never give us the real answer. The only thing to hope for is a cure but our consultant tells us they are a long way off…..so next best is good maintenance. I am trying not to put posts on this forum as I don’t sleep after as I start worrying in detail

I realise we need to hear warts and all sometimes but also some light relief is also good for us all. Dai had such a lovely way of describing things….even the cdiff! Let’s help each other rather than increase the load, but with a hint of realism

Best to all

Vicki and Colin x

[VickiParticipant]

Hi there,

My partner Colin had sct in November 2011. What happened in the less up to sct, you are given a growth injection called gcsf (you can either administer yourself or nurse can come in to do it). It was about 4 days worth. We the. Had to go down to the aphoresis unit in Bristol and you are put on a machine which separates your blood- for about 6 hours for up to three days. We were told how many cells had been collected, in Colin’s case it took three attempts to get the stem cells out because for 2 goes he didn’t get the 2 million minimum.

Basically the second time round he had to have cyclophosmahide primer to mobiles the cells, with gcsf injections and that didn’t work. The third go involved having a booster injection call plerixafor. He just got the 2 million! That said I haven’t heard of that many people who had to have 3 goes at getting them out so it’s not normally that arduous!

Best of luck with yours

Vicki and Colin x

[VickiParticipant]

Hi jean and frank,

So sorry to hear that frank has been going through the mill. The shingles sounds awful. That is one thing that Colin dreads. I have been told the pain is really horrible. Sometimes it does feel like its one thing after another doesn’t it. What about putting calamine lotion on it? Would that help?

Hope frank is on the mend a bit now. Hope you are ok too x

Vicki and colin

[VickiParticipant]

Megan

I’ve just noticed your post that Phil’s numbers are going up again, so sorry to hear that. Glad to hear that the counselling has helped you. I do understand what you mean about living for the day. It is so hard not to what if though isn’t it!

All the best with the next steps

Vicki and Colin x

[VickiParticipant]

Hi all

I’ve read these posts and just want to stress how important it is to share your worries and conerns if you feel you can. It’s a long hard road to be lonely as well as battling this damn condition. So share your highs and lows with us. We are all in it together in one way or another so let’s all help each other. This forum has been a godsend

Best of luck x

Vicki and Colin x

[VickiParticipant]

Hi there

I would say that our treatment has been amazing with the nhs, from the consultants to Dave who brought the food and drinks trolley round. They all give 100% . Colin had private medical insurance and when Colin had back pain we went private for the MRI scan. The consultant told us it was nothing sinister, nothing that physio wouldn’t cure. What he had missed In the report from the radiographer was acute wedging at t12. Myeloma to be ruled out! It it wasn’t for Colin’s nhs Gp we would have been none the wiser and things could have been very different.

We appreciate that there are good and not so good in any profession but I’ve got to say the nhs have been great for us so far

Best of luck

Vicki and Colin x

[VickiParticipant]

Hello Luciano and Chris,

Sorry to hear of your condition. When Colin was diagnosed in 2011 it was like we’d been hit by a train. We couldn’t believe what we were hearing and then frightened about it. Colin went from being a healthy ski-ing, golfing, kayaking individual and actually very annoyingly good sportsman to having a condition that threatened our normal life!!

We got our heads together somehow and he had sct in November 2012 and is in completely remission, it hasn’t been easy at times and hard for me in another way, feeling helpless to resolve this. It is doable so best of luck guys

By the way we’ve just got travel insurance with now I can travel for the two of us. They were good, declare all and it’s worth a try!
Vicki and. Olin

[VickiParticipant]

Hi joe

Just wanting to wish you all the best. My partner Colin was diagnosed age 56 in 2011. It was a real bolt out of the blue! He has had the sct in November 2012 and is in complete remission, we were absolutely scared out of our minds but the medical teams are wonderful and really look after you. On e the sct gets started there’s no where to go, it was hard for Colin obviously in so many ways of course and difficult for me as the supporter to keep that stiff upper lip when all you want to do is make it go away!

But we are where we are and hope it continues. Best of luck to you. We are told by our consultant that there are many many new drugs that are used to keep this condition at bay too,

Vicki and Colin x

[VickiParticipant]

Hello all

Sorry I can’t offer any information on the readings, but just wanted to pop on and say good luck with any treatment. My partner Colin was diagnosed in 2011 and had an sct in November 2012.

Just wishing you all the best with a full remission or if mgus that it just smoulders in the background and doesn’t leap to life 🙂

Vicki and Colin x

[VickiParticipant]

Hi all

Thanks so much for the replies it’s been most helpful. Contacted nowicantravel and they were v helpful. Told them where we are in Colin’s situation and they were great. We got an annual multi trip for £198 (one trip was 126) so we thought we’d go on the positive! I have answered yes to all the questions where possible and printed it out for Colin to double check me.

I’m always worried about the cover…..I assume pre travel means when you haven’t gone yet? Where they say you can’t claim?

Anyway we have really bitten the bullet….going to mauritius for 2 weeks. Not bad since the
furthest we have gone is Cornwall. But we thought in for a penny. It does feel very weird planning for a holiday because life hasn’t been normal:-). I found it quite hard going through all the questions on the phone as it brought it all back,…..softie me, so had a few tears.

Hope you are all doing ok. I’m still tuning in regularly but done post sometimes as I had a job to log in.

Keep well and keep your fingers crossed for us. Xx

Vicki and Colin x

• This reply was modified 10 years, 8 months ago by  Vicki.

[VickiParticipant]

Hi Stephen

Great to hear from you. I was only thinking of you the other day as you were so supportive to Colin and I. I can’t really help with the questions you pose but just wanted to wish you well.

Looking into the future is scary but it’s also good to plan, keep positive and enjoy the moment….

Look after yourself and enjoy those holidays.

Colin is still in remission, we have the hospital on the 5feb. If all is ok we are planning our first holiday. I almost dare not think we might be going on holiday! We might go to Mauritius but am scared to even think its possible!

All the best

Vicki and Colin x

[VickiParticipant]

David that’s Great well done you xx

Vicki and Colin

That’s the words we like pp undetectable

[VickiParticipant]

Hi trigger

Would just like to echo what the others have said….it is always a gamble because everyone’s mm is an individual condition. My partner was diagnosed at 56 and had an sct in November 2012. Fingers crossed so far still in remission. I would say that each persons journey through an sct is also individual.

If your mum feels she can go for it then do so. It’s worth a try. We were scared throughout and it’s hard at times but every life line is worth a shot x

Vicki and Colin x

[VickiParticipant]

Hi Andy

Glad you are feeling a bit better. Good old steph on the ball. Glad you are out of hospital and njoying the sun…..what sun! Fingers crossed for the next go at treatment 🙂

Vicki and Colin xx

Hey Tom, glad to hear your treatment is going good, are you supplementing with vodka:-)

Vicki and Colin x

[VickiParticipant]

Tom just spotted your blood results, not a clue where I am on this forum! I think figures look good….novice though 🙂

Vicki and Colin x

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