My Treatment Plan
“Typical” treatment for standard-risk Multiple Myeloma is usually as follows:
- Induction — This is usually a triplet of chemotherapy drugs taken for 4–6 cycles intended to get to a quick remission (there are multiple types of remission, not all created equal)
- Stem Cell Transplant — This is intended to kill off as much of the remaining cancer as possible
- Maintenance — A light-dose chemo maintenance regime to keep beating down the cancer.. Usually 2–3 years.
This is sometimes enough to put a patient into a long, drug-free remission. Myeloma almost always comes back, but some folks may be getting cured from this protocol.
There are several other schools of thought on how to treat this disease, but this is what I’m doing.
My induction started as Revlimid, Velcade, Dexamethasone, (RVD) but we switched to Kyprolis, Revlimid, Dexamethasone (KRD) after two partial RVD cycles.
My first RVD cycle started on Dec 13, 2016, but was interrupted by my femur and back surgeries. My second cycle started on Jan 10, but we cut it short because of some of the side-effects and switched to KRD.
The third cycle (first KRD cycle) started on Feb 2, 2017. Each cycle is 4 weeks taking Revlimid for 21 days on, and then 7 days off. I take 20mg of Dexamethasone and get a Kyprolis infusion on days 1,2, 8,9, 15, 16.
We’re planning on 4 total KRD cycles, and then I’ll do my Stem Cell Transplant in June. I’ll go into more detail about the Stem Cell Transplant in a later post. (note, I’m both the donor and recipient of the stem cells. Most people associate stem cells with embryos — this isn’t that kind of party)
Here’s a rundown of all the drugs that I’m taking (or have taken):
Revlimid — this is an Immunomodulatory drug, taken in pill form. This works in a few ways (but nobody really knows exactly how it works):It helps my immune system kill off the Myeloma, it keeps the Myeloma lesions form getting blood/nutrients/oxygen, and it helps keep the Myeloma cells from multiplying. Probably. :) I take this for 21 days on, and then get 7 days off.
My side effects: tightness in my calves, occasional headaches, occasional blurry vision and dizziness, occasional rashes. Foggy head, aka “chemo brain”
Velcade — this is a proteasome inhibitor. It used to be administered in IV form, but was later found to have fewer side effects when injected subcutaneously. I was getting this as a shot in my stomach. It works by reducing the cancer cells’ ability to process waste, causing them to die off. I was getting this twice per week for 2 weeks with one week off.
My side effects: Painful, itching, burn marks at the injection sites. Neuropathy.
Velcade works really well, but given the side effects we decided to switch to Kyprolis. If I ever have to have this again, I’ll probably switch the injections from my stomach to my arms/thighs/rear.. It needs to be injected into a fatty area, and probably some of the reason for the side effects I was having is that I didn’t have enough fat in my stomach.
Kyprolis — this is a newer generation proteasome inhibitor. It works slower than velcade, but has been shown in some cases to work for longer periods. This is injected intravenous. I get this via my port-a-cath (AKA “smart port” or just “port”), a line that goes directly into my jugular vein. There’s an access port on the right side of my chest, just under the skin. It’s quick and mostly painless to access it vs starting an IV in the arm each time. I get this on days 1,2,8,9,15,16 of each cycle. (Thursdays and Fridays for 3 weeks, then 1 week off).
My side effects: it turned some of the veins in my arm brown, and was painful during the infusion (which is why we installed a port). It also gives me crazy hiccups. I’ve had them for up to 3 hours at a time.
Dexamethasone — Dex is a nasty steroid. It kills plasma cells (and Myeloma is a cancer of plasma cells). Before I started my induction, I took 20mg of this stuff 4 days in a row, and it made the lump on my chest (a plasmacytoma) completely disappear. It also makes the other chemo drugs work better via various mechanisms (some of which are still not totally understood). A theory of mine — It raises blood sugar, which makes the cancer more active, which helps the other drugs find their target easier.. I take this on the same days that I get the Kyprolis injections.
My side effects: acid reflux, sleeplessness, mood swings, and a nasty crash after a few days when it wears off. This is what causes my “Zombie Monday.” (I just started taking it the night before my Kyprolis injections to see if that helps me manage my crash better)
Other drugs I’m taking:
Acyclovair — 2x per day to prevent shingles
Aspirin — 325mg per day on Revlimid days to prevent blood clots. I check it down to a baby aspirin on the Revlimid days off.
Zometa — taken in IV form every 3 months to strengthen my bones
Allegra — every day for allergies… (switched from Zyrtec recently, it helps keep the Revlimid rashes down)
Lansoprazole — a stomach acid reducer (Proton Pump Inhibitor) to counter the dex
Supplements:
Multi-vitimin — 2x/day on non Kyprolis days
Tumeric/Curcurium — 2.25g/day
Onnit Stronbone — take in the AM to strengthen my bones
Onnit Key Minerals — take in the PM so that it doesn’t conflict with the Stronbone.
Vitimin K2 MK7 — helps my body get the calcium to my bones (allegedly)
Vitimin D — every evening
Krill Oil — every day
I also do a saline sinus rinse 1–2 times per day to keep from getting sinus infections.
Occasionally, I’ll take an Ativan (like Valium) to help me sleep and calm down on dex days.
I’m sure I’m forgetting something in this list..
I try to eat a Ketogenic diet most days to keep my body running on fat instead of glucose. (cancer feeds on glucose) On Kyprolis days, I eat more carbs because it targets rapidly dividing cells — the carbs feed the cancer to hopefully make it more active so that the Kyprolis can do it’s job. I also avoid things containing Vitimin C and don’t drink green tea on Kyprolis days.
I’m going to the gym 2 days per week, and am slowly getting to a point where I feel like I can do a real workout. I can ride my bike, but can’t run yet because of my leg.. (it’s healing, just really slow. there was a huge hole in the bone) I need to be in the best possible shape I can be for my Stem Cell harvest and transplant.
I’m currently in cycle 5 (cycle 3 of KRD) of 6 planned, with my Stem Cell transplant happening in June and then Maintenance starting shortly after I recover from that. Maintenance is most likely to be a smaller dose of Revlimid than I’m taking now, which will go on for 2–3 years depending on what my cancer numbers look like. (I will still be taking this stuff for 2 years even if there is no detectable cancer in my body to increase the odds that it won’t come back) If the Induction and Stem Cell transplant don’t get me into a Complete Remission, my maintenance could involve other drugs.. we’ll wait and see.
Sorry for the rambling post — hopefully this sheds some light into what I’m doing to treat the cancer and the long term plan. I’ll go into more detail about the Stem Cell transplant in a future post, likely a few weeks before we start. So now, by reading the TL;DR page, this post, and my Diagnosis post, we’re completely up-to-date with what’s going on.. I haven’t gone into much detail about what the cancer numbers mean — I will do that after my numbers are run again on Thursday. I’ll have most of the results by the following Wednesday..
