4-15-2023 Note: December of 2022 marked 15 years since diagnosis. On 12/19/22, I underwent my CAR-T procedure. It was a rough road: nausea, constipation, and no appetite. However, the initial labs, post procedure, show a sharp decline in the cancer markers. That’s good! I feel decent. My body is definitely bound up. I think it’s an inflammatory response to the chemo. My joints and connective tissues are working at about 75% of their ability. Time should improve this situation. We’ll see.
Early in 2020, I developed osteonecrosis of the jaw. It presents itself as bone exposure. We are managing it conservatively, with oral hygiene that now includes a mouthwash twice a day. Previously, I had taken Zometa (a bone strengthener) once every three months. It is most likely the culprit behind this development. It is no longer part of the regimen.
In the summer of 2020, I experienced a pulmonary embolism. These are associated with the drug Revlimid. Further evidence, unfortunately, that treatments for cancer may sometimes be double edged. I take a blood thinner, Eliquis, to protect against clotting.
Blood labs: CBC, Chem Panel, Serum Free Light Chain Assay, and Serum Protein Electrophoresis monthly.
That’s a good looking chart!
Supplements:
Acyclovir 400mg twice a day
Magnesium and Zinc, 400mg & 15mg twice daily
Eliquis 5mg twice a day
Calcium + D3, 400mg & 500 IU twice a day
Fish Oil Omega-3, 1000mg twice a day
B6, Folic Acid, B12, 2mg & 800mcg & 1000mcg twice a day
Good Blood, Bad Blood 
I am on pomalyst as well. This is my 7 cycle but only the third on 4 mg. We started at 2 but it didn’t do anything and my m protein actually went up;( So we upped to 4. The results are modest as you say. My kappa light chains went down to 930 and m protein to .8 but it’s a small decrease. I start next week on the next cycle. My doctor doesn’t want to switch treatments as long as I’m stable and a symptomatic.
I will look forward to your updates.
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Thanks for the comment TG. My philosophy is that ‘less is more,” meaning that stability and being asymptomatic constitutes successful treatment. Harsher regimens may reduce the M-protein some but the quality of life would decline. Finding the balance is hard. It sounds like your doc is taking a responsible approach. I’ll watch your posts on the Beacon. Best wishes.
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Hi John, Thank you so much for your comment on my blog :)) I’ve followed you for a long time, and have had your blog linked on mine. Love your writing! All parts of your blog! (Wasn’t sure which section was best to leave a comment, so I hope you see this.) So glad you are recovered from your bout with pneumonia (physically and mentally), as I cannot imagine how scary that was! I tend to err on the side of bubblizing myself too much re travel, as I fear all the “cooties” out to get us. I’ve never had pneumonia, but know way too many of us MM-ers who have. Sadly the “average” well person does not understand how compromised our immune systems are from MM and our treatments, and so many just don’t realize how “common germs” can do us in :((
Our MM stats are similar for this Oct, so I hope your treatments go well and bring your #s down. I am IgA, and altho I don’t “enjoy” being on the higher dose Dex (40mg weekly now), it did wonders for me with Rev, back in 2010 as prep for my SCT. I have a love/hate relationship with Dex, like all of us, but thankful it gets in there gobbles up the evil MM. Stay well, be careful of all the Fall and Winter cooties out there, and thank you so much for your comment on my blog :)) Again, love your writings, musings, updates, and pictures! Julie
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Hello,
I was diagnosed in Nov. 2013 with MM. I went on velcade-rev-dex for about 6 months & had complete remission. In June of 2014 I had a SCT. Still in CR. 3 months after SCT started Rev(10mg) for maintenance. I was in CR for almost 2 years when numbers started climbing. August of 2016 started Darvalex-Rev-Dex. numbers were amazingly low & back in CR after about 3 treatments. I have been on this ever since. In March numbers started up a bit- we adopted a wait & see approach-they kept going up. I will now be going every 3 weeks instead of once a month & will be adding Velcade to the regimen along with the Dare & Dex. My M-spike is 0.5 but my Kappa/Lambda ratio is up & my Kappa FLC is up quite a bit, Lambda FLC is still normal. Could & has been much worse. I do actually feel pretty good considering I am still recuperating from a broken femur(not MM related) in February. This is a great site. I love reading about other peoples’ journeys thru MM & how they deal with the ups & downs. Thanks, Gloria Howard
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Hi John –
Just stumbled across an article about CAR-T, a new muliple myeloma cell and gene therapy in trials getting good results.
Article here: http://nbcnews.to/2ruAGXR
Not sure if you’re aware of it but might be worth looking into.
Stay safe out there!
– Jeff
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Thanks Jeff. Yes, I am vaguely aware of Car-T cell therapy. It is still in trials. When and if its effectiveness is determined and becomes FDA approved, then I will become eligible. Currently, I am borderline stable. Probably going to need a treatment variation in the near future. And, there are some options.
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