Just been diagnosed!!

This topic contains 88 replies, has 18 voices, and was last updated by  richard48 4 years, 2 months ago.

Viewing 15 posts - 46 through 60 (of 89 total)
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  • #132269

    richard48
    Participant

    Great stuff Alex. Pleased to hear you are doing really well.

    Now hoping to have my SCT at the end of April if all goes to plan following my meeting at Manchester Royal. No news on if I’ll be having a second one but consultant in Oldham wants it to happen. We’ll see. Didn’t get any results re my light chains last week but my kidney scores are better so still going in the right direction.

    i think exercise is important if you can manage and as I said before it fights off the fatigue. I miss the gym and swimming but we bought a fancy cross trainer and I try to do a bit each day although it wears me out after just a short time but well worth it. It doesn’t hurt my back either. Hopefully I’ll get back to the gym one day when I finish this journey.

    Off to Leeds on Saturday for  Myeloma U.K. Info day so hopefully will get some more info/advice. Looking forward to it especially to hear from others and some experts.

    Take care everyone

    Richard

    #132271

    rob47
    Participant

    Morning all,

    Just about to start Cycle 4 of VTD today. Just wanted to say thanks to Greg and Alex for your positive posts and advice, encouraging to know that we get back to being active. .

    Richard good news about getting a date for the SCT. I am due to go into London to UCHL in early April  to hopefully get indication of when I can have the operation.

    All the best

    Rob

    #132326

    alex2412
    Participant

    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

    #132327

    alex2412
    Participant

    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

    #132328

    alex2412
    Participant

    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.

    #132330

    chevgr
    Participant

    thanks alex

    #132340

    greg777
    Participant

    Hi Alex,

    Thanks for your post. It’s funny, the more I learn about the allo, the more I realise everyone reacts to it differently. I am probably the other end of the spectrum to you. I got GvHD pretty much straight away (Day 50) even though my donor was my brother and it was assessed as low risk of happening. I ended up with GvHD of the skin, liver and gut. The latter was by far the worst – not very pleasant. But the good news is I got through it and I don’t really have any ongoing problems, barring a few niggles which I think you are always likely to have. I have heard good things about DLI’s and hopefully it does the trick for you soon. My chimerism is still a bit wobbly so I think I have the opposite to you in that my cells won’t lie down and let my brother’s take over (i’ve always been a bit stubborn!). DLI’s are out of the question unfortunately as in my doctors words “it would kill me” so it is just a watch and wait and hope things stick. But i’m happy with that – it beats the GvHD every day of the week.

    I am hoping all continues to go very well for you. I think allo’s for myeloma are still a fairly rare beast so it’s always good to connect with those who have done it too.

    Cheers,

    Greg

    #132708

    richard48
    Participant

    Hi All,

    Hope we’re all doing ok. Still waiting for SCT but fingers crossed for end of April start. Had a wobble at the weekend – temp spike so ended up in A and E. All sorted but it was a close call today as my infection levels had gone up so they were hesitant about giving me the treatment-luckily they did. My kidney scores went back up. They were down on Saturday and I was told I was dehydrated. I’d had enough water so maybe it was the extra wine I had in Friday night.. but I have had more before so it must have been a virus… The good thing is I could also have the Zometa too today.

    Alex-that was certainly one of those ‘downs.’ I wasn’t going to go to hospital as I thought the temp would go down but I have an incredibly supportive and persuasive wife – so she got me sorted. Family matter so much!!

    By the way Alex I really appreciate your message about your own SCT. I intend to stay focused throughout and my first couple of weeks in hospital after diagnosis I pretty much did the same and spent a lot of it working (through emails). I know the SCT will be 100 times different but I will remain positive whatever state I’m in.

    Leeds Info day was great! Good to meet a few people and the speakers were excellent talking about current research etc but were really down to earth about it all as well as being very high up in the field of Myeloma. Prof Gordon Cook led the conference and has done trials before and is currently in the know with the govt, NICE and some of the drugs companies which was very interesting. Ellen Waters also did a couple of talks which were also good as were discussions about where Myeloma may come from even though no-one really knows.  I’m just glad it wasn’t a Dex day as the food was on free flow all day!!

    Best wishes everyone and hope we all continue to stay well.

    Richard

    #132801

    rob47
    Participant

    Hi Richard,

    Good to hear you have recovered from your trip to A&E. Glad it didn’t stop the treatment.

    Had some good news, I went the RNOH back specialist on Tuesday and I  can now start the removal of my spinal brace and hopefully get a bit of independence back.

    I am going into London next week to have a consultation at UCLH so hopefully will have a better idea for the timeline for a SCT.

    All the best

    Rob

    #132847

    richard48
    Participant

    Hi everyone . Hope we are all doing ok.

    Alex – how are you getting on with the removal of your spinal brace? I bet it’s a massive relief to get some freedom.

    I hope you’ve also managed to get your SCT timeline too. Mine is scheduled to start on 2nd May-got details this week – BUT – my paraproteins went up a little last week and although they have come back down (hopefully it was a blip from the A and E visit/infection) I may have to have  another cycle. Depends on result of biopsy I had on Thursday too. I should know more next Thursday. Another week of waiting – hey ho.

    Best wishes everyone,

    Richard

    #133471

    andyc
    Participant

    Hi recently been diagnosed and due to have my first chemo session Thursday (VTD). It encouraging to hear so many positive stories

    #133485

    greg777
    Participant

    Hi Andy,

    Welcome to the forum although sorry you had to find it. Hope all goes well on Thursday. Please feel free to ask any questions or share how things are going – we are all here to help.

    Cheers,

    Greg

    #133514

    rob47
    Participant

    Hi Andy,

    Sorry you had to find us and welcome. I was diagnosed about five months ago, and have had four cycles of VTD and am waiting for a stem cell transplant hopefully in June. Happy to share my experiences if you have any questions.

    All the best with the treatment.

    Rob

     

    #133522

    andyc
    Participant

    Thanks Rob

    I will let you know how I get on

    #133556

    richard48
    Participant

    Hi everyone,

    I hope we are all well.

    Andy-I hope today went as well as it could. I too have had cycles of VTD- 6 in total. I’ve just started the SCT process and had my stem cells taken out yesterday. I’m back in hospital next week for another chemo and then a return of some of my cells. Like Rob said any questions or advice just ask. The best advice I could give to anyone is just to stay as positive as you can. Yes it’s a kick in the teeth when we find out but we have to keep going. I’ve tried to carry on as normal with a few routines that have to change. It’s not always gone that way but it’s not been too hard.

    Rob-any actual dates for you SCT yet? Thought I was going to be delayed but they got me in earlier than expected!

    Good luck and take care everyone.

    Richard

     

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