What I wish I knew about Multiple Myeloma treatments 25 years later...

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CAR-T Cell Therapy- One Myeloma Patient’s Experience

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Several things. First and foremost, Tom’s CAR-T cell experience below is one patient’s account. It is difficult for MMers to draw conclusions from anecdotal evidence.

I am posting Tom’s account for two main reasons- first, many MMers are intensly interested in learning more about CAR-T cell therapy and two Tom has done a thorough job of listing all important stages, issues, etc. The information below is Tom’s account, in Tom’s words.

Lastly, Tom gave me an email address for any/all readers to email questions to him.

David Emerson

  • MM Survivor
  • MM Cancer Coach
  • Director PeopleBeatingCancer

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My Multipe Myeloma journey:
I started getting MM symptoms 4 years prior to CAR-T and was diagnosed two years ago.
I refused stem cell transplantation and initially opted for Velcade, Revlimid, Dexamethason of which I did 6 cycles or 24 infusions. I was refractory to the treatment.
I then started on Daratumumab (CD 38 marker) weekly for 8 weeks and bi-monthly for 2 months and very quickly got good results but hit a barrier beyond which no further improvements were made.
The doctor was unable to explain why. The answer became apparent once I started CAR-T preparations when my bone marrow results showed that I was negative for CD38 marker, meaning that Daratumumab had worked perfectly.
The problem was that I had other MM strains which didn’t carry the CD38 marker. MM is not a homogeneous cancer.
After two years of taking 4mg weekly of Dexamethasone and almost daily Lenalidomide alongside loads of secondary meds and treatment drugs, I suffered many side effects such as corneal toxicity (my eye sight is only just starting to recover) and ear ringing (temporary).
Dexamethasone in particular is a nasty steroid that not only causes violent mood swings, difficulty in mental focusing and insomnia but also painful swelling of the stomach.
My most severe side effect has been memory impairment or chemo brain. I still find it hard to recover short to medium term memory or vocabulary words, although it is slowly improving. Remembering names and events is sometimes a challenge.
I also note a distinct dimness and slowness in my mental faculties, hopefully this will also be temporary in nature.
The CAR-T treatment took place in the following way:
  1. I underwent CAR-T (Chimeric Antigen Receptor T-cell) treatment at the Secondary University Hospital of Jiaotong in Xi’an, China headed by Dr. Wanhong Zhao.
  2. T-lymphocytes were collected through a blood extraction process which took about 2 hours (thick needles, but little pain)
  3. Prior to this I received three days of cyclophosphamide chemotherapy. Side effects were moderate breathlessness and partial hair loss 3 months later.
  4. These were sent to Legend Biotech Laboratory in Nanjing. They were genetically modified within a week.
  5. Here “markers” were placed on the T-lymphocytes. In my case they were BCMA (B-Cell Maturation Antigen) markers. These markers have the specificity that they bind exclusively to MM protein receptors. Once they bind the T-Cells are able to kill the MM cells.
  6. Prior to CAR-T, I received for three days cyclophosphamide and fludarabine chemo-cocktail. Side effects were moderate breathlessness and dizzy spells and partial hair loss 3 months later.
  7. After 48 hours rest, I received the BCMA engineered T-cells in three doses (total 130 million cells) day 1, day 3 and day 7.
  8. I then waited for about 10 days for my body to show signs of fever. At this point hospitalisation is mandatory. 
  9. The CAR-T was injected following the immuno-repressent chemo treatment to limit the body from attacking. When CAR-T cells came into contact with MM cells they got stimulated and started to multiply.
  10. Once the CAR-T numbers grew in numbers the body reacted with an all out alarm to the “foreign” invasion and high temperature and flu like symptoms ensued.
  11. Fever climbed to over 40ºC for 5 days and ice packs and fever medication was used to limit the rise.
  12. CTS (Cytokin release syndrome) at this stage can be a mortal threat as organs can start to fail so constant monitoring was carried out. However, a controlled reaction must take place for the treatment to work.
  13. On the fifth day my blood pressure fell to around 50/50 and I was administered an antibody to stop the mild CTS and within a few hours I was able to leave the hospital.
  14. In summary the CAR-T multiply as they get into contact with MM cells and kill them, whilst at the same time the body’s immune system attacks the CAR-T cells.
  15. In less than 10 days all traces of MM had disappeared from my bone marrow. Previously I had up to 48% MM infiltration prior to CAR-T.
  16. Low levels of M-Protein linger in the blood months after treatment. These residual amounts diminish 50% every 4 weeks and take over 3 months to be completely eliminated.
  17. My current post-CAR-T side effects are lung infections (mild to medium), and random allergic coughing. 
  18. I am told it will take 12 months for my immune system to normalise and 12 months for my skeletal system to recover.
I have had a full response and have zero Minimum Residual Disease with only trace amounts of Kappa protein showing up.  CAR-T@Koenye.com

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