[alex2412Participant]

Hey Greg

Funny thing is that I may be 10 months ahead of you, but I’ve not had the GVHD yet. That’s the bit I’m really worried about. Where did you get the GVHD and how long after the allo was it?

I had the allo in May 2015 and 7 DLIs down the line, I’m still waking up each day hoping for a rash. They say that the donor I had may actually be too close a match. I’m 100% donor, but not yet had that reaction. My cells are like me and too laid back!!

Cheers Greg. Take care.

[alex2412Participant]

Hey Richard

You’ll get there fella. It’s a long old journey and you’ll have ups & downs along the way, but one day you will look back and be sat here like I am now. My consultants were very cautious about me thinking too far ahead. I was impatient and would have had the auto & allo both in one day if I could, but I was told to take it one step at a time, see how the auto goes and then we can assess our options.

When I went in for the auto, I had no idea what to expect, so I expected it to be dreadful, but I was very lucky and it was not as bad as I thought. I made sure I ate well, often forced myself to eat and made sure I got up every day, had a shower, even in isolation and took it on as I would a normal working day. Out of bed, let’s get to work, get another day ticked off and that’s another day closer to being home again.

Walking through your front door for the first time when you’re allowed home again – best feeling you can have.

Good luck in Leeds. I hope you get a lot out of it.

Best wishes

[alex2412Participant]

Hi Chevgr

I’m able to do everything I used to in the gym, but it takes me longer to get over it. Whereas I used to go to the gym 4 times a week, I now go twice and do the Parkrun on a Saturday. I feel like I’ve aged physically 20 years, I’m slower and not as strong, but I’m just so grateful to get back into it and will work hard to improve. You can’t be improving, can you?

I asked my consultant about doing weights as I wanted to strengthen my muscles and he said it was fine as long as I’m not doing competitive lifting. No chance of that! HOWEVER, that was the advice he gave to me, knowing my body, so always always ask your consultant first.

I did a lot of walking during treatment (dogs are great for that), but I stayed away from the gym due to the risk of infection. I joined the gym and joined a running club 6 months after my allo.

Don’t put too much pressure on yourself and just enjoy the process.

Best wishes

[alex2412Participant]

Hi Guys

I’ve never written or responded to posts in the past, but having read this thread this evening, I just wanted to offer all of you some hope.

Three years ago I was diagnosed with MM, at the age of 38.  I would say it was at the forefront of my mind for the first two years. One of the hardest things was dealing with the logistics of having to attend so many appointments while trying to hold down my job and provide for my young family.

My treatment plan was V.T.D and then tandem transplants.

My paraproteins were first measured at 68 and they soon tumbled as I had the V.T.D most of you guys are having. After 6 months of V.T.D, I went in for my stem cell harvest and had the autograft about 9 months in.

7 months after the autograft, I had the allograft. A donor from Germany came up trumps for me. God bless him. That was in May 2015 and I’m still having DLIs (donor top ups) in a bid to get a little bit of GVHD to eradicate the remaining cancerous cells.

Plenty of ups & downs, a bit of pain here and there, but the one constant was that of determination and a sense of humour. I swear this helps.

When I look back, I drove myself crazy in my quest for information, wanting to predict my outcome from others’ experiences. I had nothing but questions on my mind. Uncertainty. Fear.

If I could go back 3 years and offer myself some advice, I’d say “Alex, take things one step at a time, as it’s a long old journey. Listen to your body, listen to your doctors and this isn’t the end – just another chapter in your life before you get back to your best again.”

I learned from my own journey, as each of you will and I’m now back running, playing sport badly, going to the gym and really enjoying my life. I now feel wiser and stronger than ever before.

I wish you all well and I’m here for any of you if you ever have any questions.

Alex

 

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