New myeloma patient

Hi Carlos,    welcome,   but   sad that you are   coming here,     i am  68 male    MM  patient in Remmision and received the go to at the time of DVTD    4 cycles of treatment,  before stem cell harvest and  then   Transplant    19 months ago,    i dont know enough about the choices,  but sometimes the drugs are  in different levels and   combinations,      Good luck with  the treatment plan,  which ever is taken  and please keep in touch on the forum,  there is a lot of good  advice on here,  from  many people with different experiences,   we are all different,  but want the same results !   Kevin 

Hi Carlos and welcome to the forum. 

Whilst I can’t answer your question about treatment, as I haven begun mine yet, I’m in a similar situation to yours. 
My name is Jo (female) and I’m also a fit 75 year old with no symptoms  

I was diagnosed with myeloma 10 days ago and to say it was a shock would be an understatement!  I’ve been offered Isa-VRD or DRD; I’ve opted for Isa-VRD which I appreciate is a recently approved treatment.  SCT is not an option for us over 70s.  I’ll start chemo in January as I’d like to enjoy a family Christmas first. 

I posted on the forum last week and received supportive responses which really helped.  One was from PMartin which was especially relevant to me, as they’d experienced similar treatment and had experience as an 82 year old!

As I’m fairly new to the Myeloma Forum I’m not sure how you can access that response though I imagine that if you look at all recent posts, you’ll locate that one. 

I wish you well with your treatment. 

Jo

Hi Jom. Thank you. I have read your post and yes we are in a similar situation although I was diagnosed with smouldering myeloma 4 years ago so I was seeing it coming. All the best. Carlos

Carlos,

Welcome to the forum.

I am a bit confused about one thing: you mention the MajesTEC-7 clinical trial,

Chat-GPT says that it is trialing

Experimental: Teclistamab + Daratumumab (SC) + Lenalidomide → shorthand “Tec-DR”. 

and

Another experimental arm: Talquetamab + Daratumumab + Lenalidomide (“Tal-DR”). 

against

Control/standard-of-care: Daratumumab (SC) + Lenalidomide + Dexamethasone (“DRd”). 

Anyway, you are asking about Isa- VRd against D-VRd. Since the "VRd" part is the same, that leaves whether to go for Isatuximab (Isa) or Daratumumab (Dara).

Both of them are broadly similar: they are immunotherapy treatments which get the immune system to attack a section of the myeloma cells called CD38. Both are liquids which are injected. 

I have had Dara, first as part of DVRd and now standalone in my remission. The main side effect for me is that I have semi-diarrhoea for about 48 hours afterwards (not saying that it will be the same for you).

Both have actually been around for a while. Dara was approved in the US in 2015, Isa in 2020. However, these were probably not as treatments to be used up front.

Dara has been reformulated more recently with the brand name Darzalex Faspro: it can now be injected in a few minutes. Before then, like Isa, I understand that injecting took an hour or two.

I have read that side effects and effectiveness are broadly similar.

You may also want to weigh up the pros and cons of being on a clinical trial: whether the hospital doing the trial is convenient to get to, whether you want to be kept a close eye on etc

Hello Carlos,

I have Kappa free light chain mm and am in remission.  My treatment is and has been Daratumumab plus Lenalidomide etc.  Results have been spectacular..  I am now on maintenance treatment, same drugs and am a lady of 82 much older than most but seem to be doing fine.  You and Joe seem to have had no symptoms.  I had and they were pretty awful from one minute to the next I was really unwell with terrible fatigue.  From someone who was always active to a woman who just had to lie down and sleep.  It took 5 months for a diagnosis and then it all took off and here I am.

I am sure you are aware of how invasive the light chains are as they are so very small and escape into the blood stream and attach themselves to kidneys and other organs.  I already had filter problems in my kidneys but was told to drink plenty.  I do all, and every day and the kidneys have remained in a stable condition for the past 8 months.  Perhaps you might do the same.  Anyway Carlos, hope this bit of information may help you with your decision.  Best wishes. Pat

Hi Chick,

thank you for going straight into this "new for me" chemical jargon!.

I have read more carefully the options I had been given and the MajesTEC-7 trial offers randomisation between Drd or DR-Talquetamab or DR-Teclistamab. 

This combinations is believed to go for great results. I was reading that the "improvement" is the suppression of Dexamethasone as these Talq-Tecl would not require steroids.

they assign, one or the other, at random. The option available for me is either going for the stablished best available treatment Isa- VRd, with some stadistics at hand, or trust that these new options are technically better (they have not been tested enough to draw conclusions). Have you heard about this?

One would think that when a treatment drug is finally tested in humans, this is surely supported by very succesful preliminary work. Anyway, speculations appart, it is a very personal decision at the end.

Your advice to check if the trial is performed in same clinic is very important, thank you.

PMartin I  am an 83 yr old woman . I haven’t started treatment yet but have an appt with consultant next week to discuss treatment.

Hi Carlos, I completely misunderstood the situation.

By the way, in terms of myeloma jargon, you ain't seen nothing yet.

Teclistamab and Talquetamab are both examples of a newish kind of drug called bispecific antibodies. They work by linking at one end to part of the immune system called a T-cell, and at the other end to a part of a myeloma cell (BCMA for Teclistamab, GPRC05D for Talquetamab).

Starting a bispecific antibody treatment can cause some pretty serious side effects. To counteract that, the first doses are given in instalments and you would be an inpatient for a couple of nights so they can keep an eye on you.

Teclistamab is already an approved treatment in the UK (but for patients who have already had other treatments) and Talquetamab may get approval soon (likewise). Therefore, yes, all these drugs - including all the other ones - have been found to have some effectiveness and 'manageable' side effects.

I suggest asking for info on the effectiveness and side effects of the different alternatives.