The Drill

On May 24th, 2016 I began a new treatment program following a drug holiday of two months duration. I am to receive Darzalex, a monoclonal antibody, once a week for two months. Then, bi-weekly for four months. Finally, I will be infused once a month for as long as it is effective. Side effects seem to be limited to infusion reactions imitating allergies, asthma, and breathing problems. Normally, if the patient tolerates the first month’s treatments, the danger of infusion reactions diminish to near zero. Can the drug be effective and relatively free of significant side effects? Perhaps, we shall see.

I will update the results from labs taken monthly on three indices:

M-spike, the clearest indicator of cancer activity.

Creatinine, which shows how my kidneys are faring as myeloma can cause kidney problems.

Hemogloblin, for anemia, as it is a symptom common to MM patients and present in me from the get-go.

Baseline      M-spike g/dL        Creatinine mg/dL       Hemoglobin g/dL

5-16-16          1.9 😦                          0.8 normal               11.0 lowish

6-21-16          1.5 🙂                          0.9 normal               10.4 low

8-31-16          1.8 😦                          0.8 normal                 9.9 lower 😦

10-3-16          2.0 😦                         0.8 normal                 9.7 lower 😦

11-7-16           2.1 😦                         0.8 normal                 9.6 😦

12-5-16           2.0 😦                        0.8 normal                 9.9 😦

1-3-17             2.3 😦                         0.8 normal                 9.2 😦

1-30-17           2.3 😦                         0.9 normal                 9.1 😦

2-20-17          1.9 🙂                         0.84 normal               9.0 😦

3-20-17          1.7 🙂                         0.88 normal               9.3 😦

4-17-17          1.7 🙂                         0.8 normal                 9.8 😦

5-15-17          1.8 hmmm …              0.84 normal               9.5 😦

6-12-17          1.9 sigh …                    0.92 normal               9.8 😦

7-10-17          1.8 okish                      0.87 normal              9.8 😦

2-8-17 NOTE: I feel good. My quality of life is high. The myeloma cancer markers, however, reveal a low speed relapse. MM always finds a way …

So, Dr. B and I have decided to add Velcade (Bortezomib) to the Darzalex (Daratumumab) I am currently taking. Unfortunately, the momentum of its effectiveness was interrupted by last summer’s pneumonia. I was off treatment for three months. Since October, I have been taking it twice a month. I am relatively stable but the trend of my M-spike is up.

Graph of M-spike history.

Graph of M-spike history.

The new regimen has me taking Darzlex once a month, Velcade weekly, and 12 mg of dexamethasone weekly. I also receive IVIG once a month and Zometa once every three months. The latest numbers above represent the new baseline from which we are proceeding.

Persistent hip pain required X-rays in October, which we followed up on at the end of January with an MRI.

The image revealed bone involvement related to myeloma. Lesions, consistent with the disease are prevalent in the hip and throughout my pelvic area and lower spine. At this time, intervention with radiation is not necessary. We are doing most of what can be done. If the new regimen proves to be effective, further bone erosion should be minimized and healing can occur.

10-10-16 NOTE: Today, I renewed treatment with Darzalex at the standard dose. If all goes well, treatment will be bi-weekly for the next four months. After that time, I will be infused on a monthly basis. Infusions of Zometa and IVIG will continue on their respective schedules.

9-1-16 NOTE: I received my last treatment of Darzalex on 7-14-16. Eleven days later I was admitted to the hospital with severe pneumonia, which had migrated to my blood stream. I am recovering from this close call. Treatment for my cancer is suspended indefinitely. In the meantime, I will receive monthly infusions of IVIG to boost my immune system.

As of 5-24-2016: in addition to the Darzalex, I receive pre-meds to ward off infusion reactions. These include steroids, antihistamines, Tylenol, Benadryl, and Singulair. Following the first few infusions, these pre-meds may be reduced in dosage and/or eliminated. I also take Acyclovir, 400mg, twice a day to prevent shingles.

Zometa, a bisphosphanate, is a bone strengthener. I receive an infusion of 4mg over a 30 minute period once every three months.

Blood labs: CBC, Chem Panel, Immunoglobulin Panel, Serum Free Light Chain Assay, and Serum Protein Electrophoresis on day 22 of every 28 day cycle.

Clinic with oncologist once each month to review lab results.

Supplements:

Aspirin 81mg daily

Magnesium and Zinc, 400mg & 15mg daily

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

25 responses to “The Drill

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  7. 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.

    Liked by 1 person

    • 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.

      Like

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  16. 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

    Liked by 1 person

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  21. 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

    Liked by 1 person

    • 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.

      Liked by 1 person

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