Waldenstrom's macroglobulinemia: CPR treatment details

1 cycle every 3 weeks

Drug	Purpose	Tips	Dosing
Prednisone	part of CPR. helps you replace steroids.	take 2 after breakfast. that way, you'll have minimal impact by bedtime. otherwise it will be hard to sleep. Never take it on an empty stomach. No alcohol. causes nausea. Withdrawal will make you really nasty to people. Daniel gained 75lbs due to the prednisone!!!!!!! (took years to lose it) can cause hallucinations. even just with 5 days, you can get withdrawal symptoms: bad temper, flu-like symptoms. By tapering off, 30, 20, 5, you can avoid the symptoms.	100mg/day. Preferably, 2 50mg tablets after breakfast starting on day after the chemo and continue for 4 days total (they give you decadron via IV when you get infused so you don't take it on day 1).
dexamethasone (decadron)	part of CPR	They infuse you with this. So it's the prednisone equivalent, but 5 times as potent so dose is 20mg which is equivalent to the 100mg prednisone dose But decadron can actually cause hives!	20mg via IV would be normal on the morning of a CPR infusion as anti inflammatory for rituxan and anti-nausea for cytoxan). If you split it over 2 days, you'll get a dose at the start of each day. taking 10mg orally night before, and morning of a rituxan infusion may help with side effects (but it can cause hives but this is very rare)
Benadryl aka diphenhydramine	pre-med	Controls the hives if given IV before infusion (H1 receptor blocker); usually given with zantac	25mg IV before rituxan infusion if you react with hives or shakes
rituxan	part of CPR	consult with doctor before getting flu shots, etc. days later, can cause horrible headache, nausea after treatment. can cause flu-like symptoms and can cause your temp to exceed 102. Can cause bone pain: "One infusion, the bone pain was so bad that they gave me demerol and ativan as well" All the infusion related reactions are mitigated if you infuse slowly. Infusion rate is more deterministic than drugs. One person splits the dose over 2 days: 100 the first day, 650 the second and has no problem.	375mg/m2, e.g., for someone my size, about 750ml when mixed in solution (750mg)
cytoxan	part of CPR	drink 8 to 10 glasses of non-caffenated liquid every day. hair will fall out 2 to 3 weeks after you start. Will take 3 to 5 months to regrow. can cause drops in red cell, platelets, neutrophils. can cause sterility.	1gm/m2, should be about a 50mL bag
Zofran aka Ondansetron	anti-nausea	anti-nausea but causes constipation.	take 1 8mg tablet 3X per day only for 3 days after the first chemo day is over. so if you go 2 chemo days, then just take it for 2 days. this is the main anti-nausea drug.
Ativan aka Lorazepam	anti-nausea, help you sleep	take in case of nausea. it can make you sleepy. But it is perfect before bedtime at night to counteract prednisone and help you get a good night's sleep. don't use during the daytime because it can make you sleepy. Unlike compazine, does NOT cause constipation!	as needed; no more often than 1 1mg tablet every 6 hours
compazine aka Prochlorperazine	anti-nausea	good for daytime nausea and vomiting. Don't take more often than every 4 to 6 hours. don't get overheated. keep out of the sun. It is much better to always take this drug during the first week after chemo if you can tolerate the constipation rather than wait for symptoms (at which time it is too late). Can cause constipation!	as needed; no more often than 1 10mg tablet every 4 hours
zantac aka ranitidine	antacid to counteract prednisone esophagus	stay on it continuously during the whole treatment (including between chemo) to counteract the prednisone. need to be on it for 30 days since your last prednisone. Also given as a pretreatment (50mg via IV) with benadryl to prevent hives during rituxan (blocks H2 receptor)	take 1 150mg tablet 2X per day (morning and night) 50mg via IV pre-med to prevent hives during rituxan (see H₂-receptor antagonist). You could use Pepcid instead.
colace aka docusate	stool softener	the anti-nausea drugs will constipate you so this will help.	1 250mg capsule 2X per day (morning and night only while you are taking any of the nausea drugs)
demerol	anti-shake	if you chill during rituxan, then they'll give you this. But it will constipate you!	25 mg via IV

Tips

Drink 8 to 10 glasses of water a day. Need to flush the chemo out of your system so it doesn't sit in the liver. This is VERY important.
Stay away from caffeine
If temperature taken orally is > 100.4, then you have an infection; call the doctor immediately. they will do blood work and determine whether to give you oral or IV antibiotic.
Don't take tylenol.
If you go more than 2 days w/o a bowel movement, call. We may do milk magnesia, etc.
avoid crowds and people with infections.
try not to bleed
your body will tell you how much you can exercise

Treon says he sees chills and hives all the time for Rituxan. He suggests the following:

take 10 mg oral decadron the night before
take 10 mg oral decadron the morning before (Note: I've heard IV decadron works better)
infuse 50 mg Zantac IV before the Rituxan goes in. Do the Benadryl IV before the infusion instead of pill form (it costs more, but works better)
keep the rate slow and back off immediately if there are symptoms again
You get hives from two mechanisms (H1 and H2): benadryl hits the H1 receptor, Zantac (or pepcid) hits the H2 receptor. so by doing both, you cover your bases.
you should get worried if you get low BP or shortness of breath. The hives and chills are part of the game.

At my treatment, IV Demerol and benadryl stopped the shivers

Comments from readers basically were to ignore the nurses and keep the infusion rate down and subsequent times are much easier than the first.

The problem are almost always rate related (but see Joanne's comment):

Diane in AZ: I think I saw your email re: your reaction to Rituxan? My husband had the same experience you did on Rituxan. They tried twice the first infusion to get him through it but he developed horrid hives both times, even after they slowed it way down and tried the second time. The good news is, he did get through the next 3 x. full dose and with no complications. So.............even though it is not common to react to Rituxan, it can and does often work the next time with no problems. He just felt sleepy for the rest of the day.

Lou: My experience with cytoxan, aka cychlophosphamide, low dose administered orally, was very positive. The only side effect was an occasional mild stomach upset, lessened by drinking lots of water and juice. It began alleviating my symptoms within 2.5 months. Your chances of beating WM are greatly improved by keeping a positive attitude. I made it thru my 1st 10 years of WM before my 1st rituxan infusion. I do think they should have continued with your infusion at a low rate, without rushing to complete it.

Sheila: When I have rituxan, it takes about 5 hours. I don't think that you have to abandon Rituxan. Perhaps for you it just takes longer.

Edna: My first treatment had chills, hives in my ears, face, neck and back as well as throat and heart rate all of the place. They kept slowing down the infusion and giving me meds to stop the infusion reaction. After that first treatment the doctor decided to put me to the hospital for 23 hour admission. That’s the way to go! We never went over 75 and it took 13 – 15 hours to complete the CPR. Nurses were able to monitor me as my heart rate skips all over the place whether slow or rapid rate of infusion. After 2nd infusion I complained of feeling like I could not keep my feet and hands quiet. They added something to the IV to relax the muscles. I slept through most of the infusion. The answer is to ask for a 23 hour admission and make sure they don’t go over 100. I had to remind each shift not to bump it up for they all wanted to. My doctor also gave me a prescription for upset stomach and said the first week don’t wait to feel upset, just take it. Not being a pill taker I thought I’d wait and take it if I needed it. He was right and after that I would just take the Compazine for the first week whether I had an upset stomach or not. Another hint…I found that first week while you are still taking the oral Prednisone I couldn’t sleep. He gave me a prescription of Ambien and I’d just take ½ a 10 mg. pill and be able to sleep. Again, it’s just those 5 days while taking the oral Prednisone that was tough for me,. Good luck. I had the 8 treatments and went from IGM of 4000 to 756. I am starting maintenance Rituxan in January.

Bill: I think hives is pretty common with Rituxan. Often it is less the second time and even less the third. If you can tolerate 100 mg/hr, you can take 8 hours and be done -- I have friends with WM who need an overnight stay at about 25mg/hr to get it done -- but it does get done. My guess is that you will do just fine with Rituxan, maybe just slower than you want, but if not, the other modes of attack are still pretty good. Don't give up, think of this as a life experience that few get to share.

Neil: Have had very similar experience almost every time I took Rituxan. They played with infusion rate and a few times had no problems and other times had a worst reactions. The last time it got so bad that had a tightness in my chest and was given Morphine and put on oxygen (nurses said I was close to being put on the "crash cart"). After the tightness in the chest episode my onc said NO MORE Rituxan. My body does not agree with the mouse antibodies and those are what cause the violent reactions. Was very disappointed that I couldn't complete my course of Rituxan and am awaiting the human CD 20 antibody made without the mouse (mice). Sorry it didn't go good for you and hopefully they will figure out how to better pre medicate you in the future so you don't end up in the same boat I am in.

Joanne: So sorry you had such a hard time with your Rituxan infusion today. Not sure if you remember, but Rituxan messed me up, too - 1st, 3rd and 4th times. The first time there was LOTS of shaking - could hardly stay in the chair, many meds to control itching, blood pressure jumping all over, hot spots, chest pressure, leg and back pain, etc. I was there all day and we finally got it all in. 3rd and 4th weren't quite as bad, but I went in the day before for intravenous meds to prevent reactions, with more on the day of infusion. Still, the nurses said it was the worst reaction they'd seen, and it's a big unit - probably 50 chairs, in different areas and rooms. Newish, very nice.

After four months, I had a maintenance Rituxan treatment, after attending the Seattle IWMF conference and hearing Drs. Treon and Gertz speak in favor of it. That one did me in. Serum sickness. My body had built up big time antibodies and six days after the infusion, my entire body broke out in enormous hives, intense itching, spread to face and then throat, over a period of about ten hours. By the time it reached my face, I was in critical care, where I remained for four days. Allergist got me through the next few months with lots of meds, including high doses of steroids, and told me recently (that bad episode was 1 1/2 years ago) that if I tried Rituxan again, it could kill me. So even though it had helped the WM somewhat, it's no longer an option for me.

When I reported what happened to me on the talklist, I got a number of private e-mails from others who had gone through similar experiences.

Docs think it's the chimeric component - the Chinese hamster ovary part - that our bodies react to [sk: this is NOT true; humax has similar reactions]. I have high hopes for HuMax, which I'm sure you know about - animal-free Rituxan. I thought it was supposed to be available next year but haven't heard anything about it in a while.

(Just saw your other note, about HuMax. I get the notes in digest form, in the evening. If you learn more about HuMax being available, I'd appreciate knowing.)

Hang in there......hope the next infusion goes better for you, as it does for most.

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