Side effects of cyclophosphamide, thalidomide and dex treatment - as tablets.

Hi KJR,

I have had no major issues with any of your proposed drugs Cyclophosphamide, Thalidomide or Dexamethasone and have not experienced loss of hair or vomiting with them but I have not had them together in this combination.

This feels like a slightly odd choice and I suspect that your consultant might be playing the numbers game just to get you past 3^rd line.  If it isn’t effective, you have lost very little and can quickly stop this and move on to 4^th line treatments.  Pomalidomide and others are approved at 4^th line which is perhaps what they really want for you.

I strongly recommend you familiarise yourself with NICE approvals at https://pathways.nice.org.uk/pathways/myeloma which shows a flow chart.  If you click on Management then Subsequent Treatment you will see a list of all the drug combos that are approved for treatments after 2^nd line.

In my experience it has been extremely beneficial to be knowledgeable about this as many consultants are general haematologists and not myeloma experts.  With knowledge of NICE approvals I have been able to persuade mine to put me on a much better 3^rd line treatment than they were initially proposing.  That prompted me to change my consultant to one that I am now very happy with and who was able to find me a very successful drug trial as there was nothing left for me that was NICE approved that we thought was particularly good.   These events have without doubt extended my life.

If you check the other boxes on the flowchart you will see that you might have been able to have had a more novel treatment or a combination treatment at 2^nd line and possible kept Lenalidomide for a more appropriate 3^rd line combination treatment.  So a longer term treatment plan is definitely worth thinking about.

I should stress that this reply is mostly guesswork based on very little information about you and that everyone is different.  But with knowledge of NICE approvals you can at least have a proper discussion with your consultant and understand and be comfortable that things are going in the best direction for you.  They should be telling you why they have proposed this treatment and about the side effects.  If they can’t or won’t discuss this in detail or give you reasonable explanations for your proposed treatments or outline what their longer term plan is for you then I can only suggest that you change your consultant.

Hope that helps.

Just to avoid any confusion, when I said that Cyclophosphamide, Thalidomide and Dexamethasone felt like an odd combination I meant that given the drugs now available in 2020 it felt like an odd choice and went on to try and give possible reasons for this.  I do appreciate that it is a normal traditional combination and don't want to give you the wrong impression.

I'm on VTD,  Velcade, Thalidomide and dex. Velcade is injected once a week, T and D are tablets, no hair loss, no sickness. Side effects for me are rapid weight gain, numbness in fingers , legs, feet and toes. Feeling like I'm shaking inside, blurry eyes and  brain fog. Extreme tiredness and I Can't concentrate.

Hope this gives you an idea. 

Best of luck with everything

X

I had cyclophosphamide, lenomidalide, dextromehoside darratumamab and velcade on the trial they worked for me, I’m now in remission and have been for two years I had 80% myeloma in my bone marrow. I had a stem cell transplant in 2018. Gruelling and hard but now worth it.