[jomjo75Participant]

Hi
I saw my consultant last week and, when I asked about remission, I was told that Myeloma doesn’t have full remission, only partial. This came as a shock because I’m told I’ve made, “excellent” progress and many side effects disappeared when Velcade was stopped after 4 months and (more recently) Lenalidomide was stopped. Although I’m aware that Myeloma is incurable and is relapsing/remitting, in my head I expected full remission at some point, albeit temporary.
I was also told that it’s possible I’ll have chemo (Isatuximab and Dex) for the rest of my life. Whilst I expected to be on some drugs for life, I wasn’t expecting chemo for that length of time.
I know that more data is becoming available all the time and my prognosis could well change but, here and now, I’m feeling shell shocked.
Incidentally, I’m not eligible for STC transplant owing to age.
Was anyone else told that remission would be partial?
Jo.

[rabbitParticipant]

Hi Jomjo75,

It’s no big deal if you were told that myeloma remission is only ever partial, although doctors really should think before speaking.

It is a reference to myeloma being incurable, and a nudge to have maintenance chemo.

I was told that I was in “effective” remission, likewise a reminder that one is never really cured.

On maintenance being for life, that is the standard recommendation (I have had it for well over 3 years so far). If the going gets tough in terms of side effects at some future stage, recommendations can then be

Regards
Rabbit

• This reply was modified 1 day, 12 hours ago by  rabbit.

[rabbitParticipant]

… ignored! (Sorry about the split message 😀).

Regards
Rabbit

[najmahParticipant]

Hi Jo, I didn’t know either that remission from Myeloma would only ever be classed as partial, although like you I know it is a relapsing/remitting disease. Maybe it was the way the consultant told you and used the word ‘partial’ that came as a shock.

I know when I saw my consultant the time before last and I mentioned that my programme of treatment was listed until August 2028 she said ‘unfortunately that’s not the end of your treatment, it will continue in some form for the foreseeable future’.

I hope you can put the phrasing behind you and that you continue to feel well.

Najmah x

[paulomarinheiroParticipant]

Hi there all,
I was diagnosed in December and started treatment in January.
The info from my lovely Consultant is rather different from others. Last blood test showed no trace of dodgy paraproteins or light chains etc and he said, and confirmed it in follow up email, that I was in complete serological remission. Remission is also graded on page 23 of Myoloma-An Introduction (from Myeloma UK, very helpful publication). He has however always emphasised that Myeloma is incurable and it will return.
Everything else he told me to expect from the beginning has been spot on and I trust him implicitly so it seems like it’s a question of description.
So onward and upward! 🤞😁

[jomjo75Participant]

Thank you Rabbit.
If you’ve been on maintenance long term, is chemo still two or four weekly?
Jo.

[jomjo75Participant]

Thank you Najmah; sounds like your consultant gives more realistic answers. My consultant is very kind and compassionate but she does tend to deflect if I ask her a challenging question.
I knew my protocol meant I would be having fortnightly chemo until cycle 20 when I’d move into four weekly, though confess I thought that might be sooner as I was moved to fortnightly sooner than anticipated. I also realised that I’d be taking maintenance drugs forever. In my mind, however, I was thinking in terms of pills not Isatuximab infusions.
I am indeed feeling well though fatigue is ongoing and means I’m having to adjust to having considerably less energy.
I feel I just needed some reassurance from the group and I’m grateful that I’ve received it.

[jomjo75Participant]

Hello paulomerinheiro

Thank you for your response too which has also helped.
Like you, I began treatment in January and by the end of April, my paraproteins were,”too small to quantify”. Great news. My latest bloods show that all serum free light chains have normalised. Of course my immunity is low, but everything else is good. I feel well and have fewer side effects and hang onto that.
I’ve known since diagnosis that Myeloma is incurable and, at the age of 76, can live with that.
Whilst I had anticipated maintenance treatment for life, I hadn’t expected maintenance would mean chemo plus the other drugs. I especially hoped to be rid of Aciclovir as that is the drug likely to be responsible for my 50% hair loss.
I will adapt to this new normal just as I have to all the other challenges.
Jo

[jomjo75Participant]

To everyone who responded.

Your replies have really helped me to get my head around this and to put things into perspective.
I’m in a much better place than I was a few days ago and as one of you said, “onward and upward.”
Thank you again
Jo.

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