The goal of this page is to try and outline the various drugs and procedures I have been through more as a reference for others that are new to Multiple Myeloma. These are simply my experiences but hopefully they'll be helpful in some manner or another. I've tried to link Wikipedia references where possible for medical definitions, etc.
Zometa - a bisphosphonate used for strengthening the bones. This is given via IV and can be used to help protect the bones against the MM where the potential of lytic lesions exists. I've been told to get this monthly by the doctors at DFCI to protect against potential issues. As it was explained to me, the process of getting the zometa and it's delivery to the bones helps protect against MM by it taking precedence over the MM (like two people trying to get thru the same door, someone has to go first.) Effects - expect to feel the zometa, after the first dosage, after 2 days or so. I experienced all the muscles in my back getting cramped as if I had played rugby two days prior. The next visit I barely felt the zometa.
Revlimid - Rev is an offshoot of Thalidomide (the drug given to pregnant women in the late 60's, early 70's that caused birth defects) and is used in conjunction with Velcade to help fight the MM cancer cells. This is taken orally. I had the RVD (Rev, Vel, Dexamethazone) cocktail over four cycles, 14 days on, 7 days off (so approximately one month per cycle.) Due to the nature of the drug (see reference to Thalidomide above), you have to talk with a pharmacist before receiving your dosage and you have to answer a questionnaire from Celgene each month (confirming you are not having unprotected sex while using Rev). Effects - for reference, my dosage has been 25mg. Approximately 3-4 days after starting the Rev I started to experience an itchiness behind my ears (on the scalp) and I noticed the skin of my eye sockets becoming bright red. This soon followed with my forehead breaking out and my scalp just above the forehead becoming red and itchy. The first night I noticed this the itchiness drove me crazy. I have found that Zyrtec best fights the itchiness. Recently, I also experienced a swelling and redness in the eyelids, near the bridge of the nose.
Velcade - Velcade, used in conjunction with the Revlimid as part of the RVD cocktail, is administered via IV and is usually done by interrupting your saline drip. You'll get the Velcade approximately every third day, or four times during the 14 day 'on' of the cycle. Interestingly, the administration of Velcade was discovered as an accident. When first introduced, they attempted to administer via IV over a 30 minute time period but patient's blood pressure plummeted. So they extended to a drip over 60 minutes and the same thing occurred. Finally, someone mistakenly just administered the Velcade directly into the drip like a shot. This worked. So it's administered, via a push, lasting approximately 5 seconds. Effects - one of the biggest concerns with Velcade is Peripheral Neuropathy. If you start to feel PN coming on they will dial back the dosage to help control the PN. In my case, I didn't start noticing the PN until about a month or more after my last cycle of RVD. What I did notice, approximately three days after the last dosage of Velcade each cycle, was a burning in the palms of my hands. Sometimes I would also feel this in my feet as well but that was the only experience I had relating to PN during the actual cycles.
Dexamethazone - Also known as Decadon is a steroid and the third part of the RVD triumvirate. According to Wikipedia, it is commonly used during chemotherapy to counteract certain side effects of the treatment. You can take this orally or via IV. I had it via IV in conjunction with the Velcade or four times per cycle. Effects: depending upon your dosage (my cycles had a dosage of 40mg per) expect that the steroid will keep you awake and potentially 'amp' up your level of "toxicity" - in other words, people will get on your nerves quite quickly. Warn your friends and loved ones that you will be an absolute beast for the first few days. The nurses warned me that I may just 'kick the cat' - I haven't but boy did I feel like I got close. Other effects, weight gain, bloating and yes, gas (as my son would say, farting!) I've found that the Dex will keep me up on day1 but I've not had that big of an issue with sleeping. Unfortunately it also causes a bit of constipation - you eat but nothing seems to come out. And you bloat and you're gassy. Ok, I've said that twice, but hey, that's what's going on!
Cytoxan - in prep for the harvest, Cytoxan is used to drop your WBC count so that your body starts to produce more. Used in conjunction with Neupogen to get your body into t-cell creation mode. Side effects of Cytoxan can be nausea, hair loss, nail loss and some other nasty things. I was warned that I should expect the effects of the Cytoxan to kick in at approximately 8 days (potentially as many as 12 days). 8 days had me at the Saturday prior to the start of the harvest (the day after the insertion of the catheter). I didn't feel any nausea but I did get a bad chest cold, potentially due to my reduced immune systems. I was done w/ the harvest in 1.5 days with my catheter out on Wed. WHAT THEY DIDN'T TELL ME IS THAT THE HAIR LOSS THING TAKES MORE LIKE 15-20 DAYS. I thought I was done and had gotten past the hairloss until the following Saturday (15 days). By that Monday it started coming out in droves. If you're taking Cytoxan, set your hairloss clock at 15-20 days before counting your chickens!
Neupogen - the Neupogen is used as a boost for the t-cell production. If your Cytoxan is given on a Friday, your Neupogen shots will start on the following Wednesday (5 days after the Cytoxan). You will get a Neupogen shot every day through the harvest (so Wed, Thur, Fri, Sat, Sun, Mon, Tue in my case). This comes in it's own packaged needle and is shot into the arm. It will cause a bit of local soreness. I was warned of bone pain but didn't experience this until Sunday. At that point I couldn't stand, lay down or sit normally. I had to literally have my body in a V position (legs up in a chair and back tilted slightly forward). The bone pain was mainly in my pelvis, around my shoulders - anywhere you have big bones. The Neupogen is building t-cells in the marrow so those areas get worked overtime and your body lets you know. Again, I really only had an issue on Sunday (of course Monday I had a chest cold/infection so I had other issues to deal with.)
Peripheral Neuropathy - Although Peripheral Neuropathy isn't a drug per se, it is a side effect from the drugs taken, in this case, Velcade. Technically, this is damage to nerves of the peripheral nervous system. These have both positive and negative effects. Negative effects are loss of feeling. Positive effects are the opposite, and I don't mean 'good' feelings! Keeping this to the effects on me (you can read the details on Wikipedia for both neuropathy and velcade for the technical details), I noticed the neuropathy approximately a month after my last dosage of Velcade. During the actual cycles (I was RVD, 14 days on, 7 days off w/ Velcade twice a week) I noticed a burning sensation in my hands on the 3rd or 4th day after the last treatment (so just getting into my 7 days off). My hands would literally get hot and I had to hold a cold beer (yes, you can laugh at me for that) or something to cool them down. I somewhat noticed this in my feet but it was really the hands that were bothering me. As this wasn't a common symptom, it was not diagnosed as neuropathy. After my treatment was finished I noticed my feet were extremely dry and painful but I couldn't tell if one was associated w/ the other. It was both feet (so planter fasch...whatever was not the issue) and the pains varied from heel to ball of foot to a specific place on or near a toe. I later found that this was commonly related to Amyloid Deposits which I'll cover later. I'll speak about the drugs taken below but to summarize the issues I faced:
- burning palms (only occurred on 3rd/4th day after last dosage of RVD cycle)
- pain in both feet; ball of foot, heel, pain on specific toes (usually underside)
- after pain (a few weeks), there was substantial numbness in feet, specifically at night
- pins and needles - upon waking in the morning
Potential solutions (though none worked specifically for me)
- Olbas Oil (brand name), similar to a tiger balm, also used as a inhalant/decongestant
- Palm Butter - used for taking care of cow udders - must be good!
- Vitamin B12 - I take 1000 micrograms/day - great energy boost as well
- Alpha Lypoic Acid / Phenyl A Carnitine - I've not found any benefit but continue to take per the neurologists recommendation. PLEASE NOTE - CONFIRM W/ YOUR DOCTOR, THESE TWO SHOULD NOT BE TAKEN IN CONJUNCTION W/ VELCADE. SIMILAR TO GREEN TEA EXTRACT, IT CAN PROHIBIT THE JOB THE VELCADE IS SUPPOSED TO DO.
Lyrica - Lyrica was the initial drug prescribed to deal with the peripheral neuropathy (PN) that I was experiencing. My initial dosage was 75mg pills taking one at night, one in the morning and one in the afternoon. At first, I noticed no improvement whatsoever and was contemplating the need to renew my prescription. I'd let the scrip run out on Saturday and by Sunday was begging for more. This addressed the issue more than I had realized. The maximum dosage my doctors would allow was 300mg in one day so I moved to taking two at night, followed by my morning and afternoon dosage. Even though the pain was reduced, it still wasn't cutting it. I can't say I noticed any difference in the Lyrica except when I had gone off it completely. I also experienced no noticeable side effects from the drug.
Nortriptylene - Nortriptylene was next prescribed to deal with my PN when the Lyrica didn't seem to be working as well as intended. I have to say, until today, I didn't realize this was used as an antidepressant or to assist in preventing bedwetting - but I guess you learn something new ever day! I was told that this drug takes a while to get into your system and start working. It wasn't until approximately 3 weeks after starting the Nortrip and an additional 2-3 weeks beyond noticing the first changes in my PN, that I started to see serious change in the PN. To give you rough time frames: 1/12/10 was my last dosage of Velcade; my harvest started on 2/8/10 which is when we first started thinking my foot pain was PN related; 2/18/10 was when I started the Lyrica; 3/3/10 was when I started the Nortrip (10mg); 3/10/10 increased Nortip (20mg); 3/16/10 started noticing improvement in the PN (and continued improvement from then on.) The Velcade was supposed to cause PN for up to three months (4/12/10). Due to the Amyloid Deposit confirmation, this could potentially last longer but as of today (6/3/10) I'm still feeling but not bothered by the PN. As of the beginning of May I decreased the Lyrica dosage to 200mg and as of 5/28 I decreased the Nortrip dosage to 10mg. This decrease has seen a recurrence of the numbing but no real pain. Side Effects: I did notice some of the dry mouth that I was warned about but the other thing I feel like I noticed more so is a dizziness (not like the tilt-a-whirl but more woke up too early and haven't gotten your bearings yet) as well as spaciness (my true, blonde, self coming through). I'm trying to see if these go away with the decrease (and hopefully soon cessation of the meds.)
Coming Soon
Amyloid Deposits -
Delaudid -
Lovenox -
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