[richfsModerator]

Hi Peter,

As others have said in this thread, it’s a shock to find ourselves in this ‘club’ of myeloma patients.

Myeloma UK have just trained some peer-volunteers to assist on this forum. I am one such person and was treated for myeloma in 2019 with VTD and a stem cell transplant.

I’m aware that this thread includes others with a new diagnosis and at different stages of treatment, it’s good that we can all share together here.

You’re certainly right about steroids messing up your sleep pattern. I did find, however, that they gave me more energy and the resulting activity increased my appetite which was helpful to get some weight back on before the stem cell transplant.

How are you getting on in your treatment now?

Do let us know if you’d like any advice about different stages of treatment and recovery, we’re here for you.

Rich.

[richfsModerator]

Hi Jiffie,

I just wanted to echo Mulberry’s encouragement that the SCT is bearable and very worthwhile. Hopefully you’re now through your SCT and on the path to regaining your strength and health.

Myeloma UK have just trained some peer-volunteers to assist on this forum. I am one such person and was treated for myeloma in 2019 with VTD and a stem cell transplant.

It did take me a while to get my energy levels back after the SCT, but I live a mostly normal life these days with lots of walking and some cycling (1000 miles of cycling in total last year). Do give yourself time to rest, the fatigue lasted for months in my case.

If and when I need further treatment, I will gladly go though the SCT again with the aim of having many more years of life ahead.

Have you had bisphosphonate infusions to aid bone recovery? I had these monthly for 18 months and now quarterly, they’re very helpful and don’t seem to have any (short-term) side effects.

Do let me know if there’s any advice you’d like, it’s great that you’ve joined us on this forum – you are not alone.

Best wishes,
Rich.

[richfsModerator]

Hi Victor,

Myeloma UK have just trained some peer-volunteers to assist on this forum. I am one such person and was treated for myeloma in 2019 with VTD and a stem cell transplant.

I am sorry to hear of your wife’s diagnosis and appreciate your role in caring for her and helping to manage her treatment. My wife was so helpful to me through my treatment.

Personally, I found that as the chemotherapy affected my sense of taste, I went off sweet food altogether but was often keen to eat savoury. Some weeks I ate nothing but cheese straws, then I’d go off those and only eat crisps. Lots of people will tell you to listen to your body and eat whatever you fancy – there’s certainly some truth in that. It’s hard to explain how the change of smell or taste can put you off food, but you may be able to find things that your wife can enjoy eating.

I found that exercise was so helpful throughout all of my treatment, and I’m sure this improved my appetite. Long walks were the order of the day.

After the stem cell transplant, I found that my appetite was very low. Gigner-nut biscuits were good as they also help with nausea, other than that tasty food like curry was actually easier to eat as everything else seemed so bland.

I’ll see if I can find anything from others and will get back to you.

Best wishes to you and your wife, hang in there and know that the treatment can be very effective,
Rich.

[richfsModerator]

Hi Gizmo,

It’s been a while since you’ve posted on this forum, I’m just checking in to see if you’re still looking for advice or support?

Myeloma UK have just trained some peer-volunteers to assist on this forum. I am one such person and was treated for myeloma in 2019 with VTD and a stem cell transplant.

I ams sorry to hear of your MGUS diagnosis and other health struggles.

My monoclonal IgG level was almost 40g/l at diagnosis of myeloma, 30g/l being the threshold for diagnosis of myeloma. A friend of mine has ‘smouldering’ or asymptotic myeloma with an IgG level of just under the 30g/l threshold so is just being monitored and has been stable at those levels for 3 years. As I understand it, MGUS and smouldering myeloma may or may not lead to active myeloma, so monitoring your bloods every 1-3 months would be normal practice.

It sounds to me, with your bone pain and weight loss like there is something else needing investigating. Have they done a bone marrow biopsy?

Almost everyone you hear of who is diagnosed with myeloma has had to really push their GP to get to the bottom of their symptoms, so do persevere. I have also experienced very poor communication from our local hospital, again I almost always have to chase them up over appointments and results – it’s tiring, but sadly part of the process.

Do get back in touch via the forum if you’d like to – we’re here for you. I hope that things have improved for you since last summer.

Best wishes,
Rich.

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