[davidainsdaleParticipant]

Hello Fred

Thanks for sharing your story which will give all myeloma patients and carers a lot of encouragement.

As they say, myeloma … it’s a marathon not a sprint!

David

[davidainsdaleParticipant]

Hi Morwenna

Sorry to hear that you have been diagnosed with myeloma and have just started treatment. You don’t say which drugs you are on, but in my experience from knowing lots of patients in our myeloma support group, the side effects are very variable and individual.

The patient information leaflets which are available often give a long list of possible side effects so its not surprising if one or two of these are present.

Very often the side effects disappear after treatment has stopped. Loss of taste is quite common for those on myeloma treatment. If you are worried then you could try the Myeloma UK nurse helpline or GP for a second opinion.

Hope this helps.

David

• This reply was modified 1 year, 2 months ago by  davidainsdale.
• This reply was modified 1 year, 2 months ago by  davidainsdale.

[davidainsdaleParticipant]

Hello glenc

They say that myeloma is a marathon, not a sprint, so it’s probably best to take each day as it comes and not to worry unnecessarily.

I had my Stem Cell Transplant back in 2014 but had family at home to help. Fatigue is probably the main issue whilst you recover, and avoiding any infections. I think that the hospital team would only let you home if they thought that you were well enough to manage on your own, and it is likely that some support might be available through your GP and district nurse, depending on where you live.

I would also suggest making contact with one of the local myeloma support groups if there is one in your area and Macmillan who are both good sources of advice.

Good luck with your DVTD treatment.

Hope this helps

David

[davidainsdaleParticipant]

Hi All

It’s been quite a while since my last post on this forum so I thought it would be a good time to give an update. ( First diagnosed with myeloma start of 2013 ).

Now on Cycle 44 of Daratumumab monthly maintenance. Bloods, paraproteins, organ function all normal. I’m doing well, just the usual few days of dexi fatigue after treatment, Neuropathy continues to improve slowly and doesn’t really affect quality of life. Treatment is proving very effective. Second set of 24 cycles of Zometa completed – hurrah!

At my last monthly appointment I asked if they would do a glucose/diabetes baseline check to save me hanging on the phone for a GP appointment. I believe that patients on long term dexi may be at risk of developing diabetes. Results came back normal so it was useful to have a baseline check.

As ever, hope this helps.
David

[davidainsdaleParticipant]

Hello Rich

Thanks for your post and kind words.

I’m the support group leader for the West Lancs amd Merseyside myeloma support group. We have quite a few in our group now on Daratumumab, it seems to be quite well tolerated and effective at controlling the myeloma. It’s good that patients and carers in the support group can compare notes.

There is a separate thread on this forum ( 2nd line DVd maintenance ) which may also be of interest if you’ve not found it already.

I have to admit that the 5 months of treatment with 8 cycles of DVd was a slog with various side effects which have been mostly temporary. I finished this in April 2020 , now three years ago. When I started the Dara was given by IV so it meant very long days in hospital on a drio, much easier now that it is by injection.

I’v been on monthly Dara maintenance since then and Zometa infusion. Just finished the Zometa last month after 24 cycles. So I just had my 39th cycle of Dara today. Bloods, myeloma proteins and organ functions all normal so came away from hospital appointment very pleased.

Hope this helps.
David

[davidainsdaleParticipant]

Hi Dave

Thanks for sharing your experiences of the DVd-T treatment. Good to hear that treatment has been succesful and you are improving. Good luck with you future treatment.

David

[davidainsdaleParticipant]

Hello laflack

Your are best asking your medical team, but from what I know about it I think the answer is probably yes.

Hope this helps
David

[davidainsdaleParticipant]

Hello mmsuffrah

Thanks for your post. Glad to hear that your 2nd allo SCT has gone well, it can feel like a bit of a slog at times so it’s nice to have a little treat now and again. Hope that you have a good long period of remission.

I was offered a 2nd SCT at 2nd relapse but for various reasons decided against it. One reason, as you point out in your case, there is very little data or research on the effectiveness of the various options. In hindsight this was the right decision for me because the monthly dara maintenance has proved very effective, now on Cycle 36 of maintenance, pps undetectable and doing well. I still have the option of a 2nd SCT at 3rd relapse if needed.

I have heard that the treatment regime following DVd+SCT has changed recently and now it is a few months of dara consolidation' rather than continued monthly maintenance’. So a drug free period after transplant would have been an advantage.

Interested to hear that you have had the dexi` buzz’. I’m still on dexi for two days each month and have never had the highs, just lows of sleepless nights and fatigue for a few days afterwards. Just shows how we all respond differently.

Hope this helps.

David

[davidainsdaleParticipant]

Hi Everyone

It’s been a while since I last posted so thought it was a good time to provide an update on my monthly Darzalax maintenance treatment. Now on Cycle 35 of monthly maintenance following 2nd line treatment of DVd in 2019.

I am keeping well with bloods, pps and organ functions all normal, so very pleased at how effective the DVd and monthly maintenance is. So that’s my Xmas present all sorted.

Neuropathy continues to improve and is there just in the background, not really a problem or noticeable. Tired with the dexi for a couple of days but very predictable.

I’ve been keeping an expensive bottle of red wine to one side as a treat, so have this to look forward to!

Hope this helps.
David

[davidainsdaleParticipant]

Hello ree2112

Sorry to hear that you are having a few side-effect problems with your DVs treatment. It does seem very hit and miss as to how it affects different patients.

I had eight cycles of DVd starting October 2019, and am now on Cycle 33 of monthly maintenance. It does seem very effective, and no real problems apart from some fatigue and a bit of neuropathy.

If you look through some of the earlier posts in the Treatment section of this Forum, you’ll find some more detailed comments from me and other contributors about 2nd line DVd treatment.

Hope this helps, and good luck with your treatment.

David

[davidainsdaleParticipant]

Hello mmsuffrah

Glad that you found my earlier posts helpful. I think that the million dollar question is whether SCT adds to the remission period of maintenance, or simply runs in parallel with only marginal additional benefit. I am not aware that there is any research that has been undertaken to help address this question.

It was a difficult decision for me, but looking back with hindsight it was the right decision not to go for second SCT. I am now on Cycle 31 of Darzalax maintenance with bloods and pps all normal, so it’s very effective and I am tolerating it well.

I always have the option of a second SCT at third line treatment in reserve. Happy to discuss further, my contact details are on the West Lancs and Merseyside myeloma support group website.

Hope this helps

David

[davidainsdaleParticipant]

Hello twinz

I forgot to mention that the other thing which really helped me was wearing thick tight socks. At one point in order to get any sleep I was wearing three pairs of socks and trainers in bed. Sounds daft but it worked.

Hope this helps

David

[davidainsdaleParticipant]

Hello twinz

Sorry to hear that you are suffering from neuropathy. It’s quite a common side effect of myeloma treatment particularly due to the Velcade. I had it quite bad following second line treatment of DVd.

There is quite a lot on this forum and the Myeloma UK website about it if you do a search. I would certainly mention it to your clinical team because they may be able to help with some medication or change the treatment.

In answer to your question, it seems very individual. I know some patients whose neuropathy improves very quickly, others not at all. In my case it has reduced gradually over two years and is now very much better.

You can buy neuropathy oil from Amazon and other internet suppliers which I think does help.

Hope this helps
David

[davidainsdaleParticipant]

Hello Mark

I would like to add my own words of encouragement to those you’ve already had.

I was diagnosed in 2013 aged 59 and also pretty much wheelchair-bound for 12 months.

First round of treatment was very successful and I started second line DVd in 2019.

If you look on this Forum in the treatment section you’ll find some of my earlier posts.

I have to say that it was a slog but well worth it. Now on Cycle 30 of monthly Darzalax maintenance, bloods and pps all normal,and able to enjoy my retirement. I am also the support group leader for one of the groups in the North West.

Hope this helps.
David

[davidainsdaleParticipant]

Hi Brian

Good luck with your treatment.

There is a separate thread on this forum where I have posted updates on my Darzalax maintenance treatment.

Now on Cycle 29 of maintenance, bloods and pps all normal. This followed 2nd line treatment of DVd in 2019.

I’ve been told that for me, Revlimid is the most likely treatment for third line.

Hope this helps.
David

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