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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

First RVD treatment today, when do side effects kick in?

by heatherlib on Tue Jan 06, 2015 2:27 pm

So I had my first RVD [Revlimid, Velcade, dexamethasone] treatment today, and I am anxious to see how I react in terms of side effects.

I was wondering how long it usually is until the side effects from RVD start occurring, and what they are? Does one feel the same the first dose of dexamethasone as after the 10th? Is it cumulative? Problems at the injection site with Velcade? How soon do those issues arise?

Perhaps I need to relax a bit. :-) But I feel good and am wondering if the hammer is going to drop!

heatherlib
Name: heather
Who do you know with myeloma?: self
When were you/they diagnosed?: may 2014
Age at diagnosis: 52

Re: First RVD treatment today, when do side effects kick in?

by Mister Dana on Tue Jan 06, 2015 4:54 pm

Every Tuesday, I had CyBorD (Cytoxan, Velcade and dex), not RVD, so that is two out of the three you are taking.

There were predictable side effects and then there were occasional side effects. Every Wednesday, I was energetic from the dex and it was hard to fall asleep. By the next day, that had worn off.

One of the drugs, maybe the Velcade, gave me diarrhea on Wednesdays. After that, life was nearly normal until the next week.

Some weeks I had other well known but minor dex side effects, such as blurred vision or night sweats. I did "come down" a bit late in the week -- for me, that didn't mean I needed a nap, just that I was a bit creaky and short of breath.

Mister Dana
Name: Mister Dana
Who do you know with myeloma?: Me
When were you/they diagnosed?: December 2013
Age at diagnosis: 66

Re: First RVD treatment today, when do side effects kick in?

by Sailor Mike on Wed Jan 07, 2015 11:18 pm

I must say that, from what I have heard, everyone is different.

I received the same chemo regimen. Although the dex immediately made me snap at my wife and gave me energy, I was tuckered out on the days when I would stop taking dex.

I also had problems with constipation right from the start. Some of this may have been due to the radiation treatments I was having at the same time.

Other than that, I noticed growing neuropathy in my index finger and thumbs (numbness), starting about my 3rd cycle of the drugs. It wasn't until weeks after I had completed my chemo treatment (4 cycles) that the neuropathy in my feet became evident while trying to keep up with my daughter as we walked all over New York. Normally, I don't walk miles at a stretch. Almost like a hangover, the neuropathy got worse once I stopped the drugs, and could be rather painful in the soles of my feet when walking.

Its been months since completion of that chemo and the numbness and pain from the neuropathy have faded somewhat. Its tolerable considering the alternative.

Sailor Mike
Name: Mike Verla
Who do you know with myeloma?: Myself
When were you/they diagnosed?: February 2014
Age at diagnosis: 62

Re: First RVD treatment today, when do side effects kick in?

by James S on Thu Jan 08, 2015 12:11 am

I have had the same treatment for 3 years with mild neuropathy in the last year in my feet. Have 21 days Revlimid (5 mg) on, 7 days off. 3 weekly shots Velcade subq, Zometa monthly, and dex 8 mg on shot days during the 28 day cycle. Was a little hyper on shot days from the dex. Local oncologist prescribed Ambien which has worked well. Just take on shot days Don't usually get my 4 mile walk in that day but, outside of that, I feel pretty good. The lowest dose of Revlimid may have something to do with that, but it has worked well.

All numbers are normal and in February I expect to be taken off all meds! Velcade site is itchy and red with mild fever. They switch sides in stomach but skin is discolored from the long-term treatment. Since I don't wear tank tops :D it doesn't show.

James S
Name: James Szalay
Who do you know with myeloma?: Self
When were you/they diagnosed?: Nov. 2010
Age at diagnosis: 68

Re: First RVD treatment today, when do side effects kick in?

by K_Shash on Thu Jan 08, 2015 3:00 am

Hi Heather,

I just completed three weeks of my RVD and now off the Revlimid (15 mg / day) for a week.

Please refer to my thread ("K_Shash's RVD induction therapy experience"), where you had posted a comment, too, to see the details of my experience so far. I am posting this to try and specifically address the few concerns:

I have had no side effects specifically attributable to Revlimid. My oncologist advised me that the side effects should not be cumulative (I had asked him specifically).

My biggest problem has been (and today, after the 4th weekly dose of dex and the Velcade shot) the dex, which makes me jittery and my heart starts 'thumping' with the slightest physical activity within about two hours. I could only sleep on the first two nights of dex with the help of Benadryl (Thanks Tracy J).

Also, the first Velcade shot gave me a 'sunburn like' deep pink patch the next day and it was burning and itching. My oncologist told me to use the steroid cream and it helped. However, Multibilly directed me to Dan from Phoenix's post:about the air bubble technique for subq Velcade injections. The last two weeks the patches, though they did appear, I almost had to look for them. These milder patches were not deep pink like the first one, which was almost glowing, like a sunburn, and these did not burn or itch or bother me during a hot shower. Thanks again Dan and Multibilly.

All these three weeks my stamina and ability to exercise has returned in the same pattern:

  • Wednesday (20 mg dex in the morning and Velcade around 2:00 p.m.) - No push ups, squats, or more than few paces of brisk walk. Take 50 mg of Benadryl. Mike B had cautioned me about the side effects of Benadryl and I checked with my oncologist, who OK'ed it for the occasional use.
  • Thursday - No strenuous exercise and can walk around 200 yards at a time at about 3.5 miles per hour.
  • Friday - Half of the normal exercise (the pounding in my chest warns me immediately) and can walk about 500 yards at a brisk pace.
  • Saturday evening - I haven't pushed it, but I walked about a 3 mile round trip without any adverse feeling.
By the 6th and 7th day after the dex and Velcade, I am ready to go play golf, walking and carrying a bag. However, I found out that walking 200 yards at rapid rate got to me after the 4th fairway and I had to quit after half the round. Only riding a cart for me till this induction phase is over.

I only had one bout of diarrhea and I am not sure if it was due to all the veggies that were in a noodle soup that I had a few hours prior to the diarrhea. Two prior nights of pepperoni pizza with some crushed hot red pepper and possibly a bad mushroom in the soup could be to blame, too.

As Sailor Mike wrote, and I have read the same thing: "everyone reacts differently to this RVD treatment."

I think it also depends on the dose levels. My oncologist cut down the 'standard chemo pharmacy dose' of the weekly dex from 40 mg to 20 mg, before he signed the prescriptions. Dr. Santiago in his topic "Recently Diagnosed with Multiple Myeloma" posted that his 40 mg of dex and 25 mg of Revlimid may have caused him some sugar spike problems, too.

I will have a complete blood panel on Monday and review the progress with my oncologist on Tuesday. I hope the lower levels of Revlimid (which may have avoided any major side effects) have not slowed or compromised the effectiveness of this chemo. I will certainly post the findings on my topic next week.

My physician wife was able to discuss my treatment and the plans for future ASCT with a renowned myeloma (and lymphoma and leukemia) expert just yesterday and found that even 5 mg or 10 mg of dex can be adequate. My understanding is that this steroid is more a catalyst for Velcade and Revlimid to do their job.

One note: I am an 'addicted coffee drinker" and I have 3 or 4 12 oz. (355 ml) mugs of coffee till around noon, every day. I am going to try and quit or reduce the coffee intake, at least for the first two days after dex, and see if that reduces my jitters and the fingers tingling only on the second or third day.

I sincerely hope you can tolerate this therapy well and have a complete remission soon.

K_Shash

K_Shash
Name: K_Shash
Who do you know with myeloma?: Self
When were you/they diagnosed?: November 2014
Age at diagnosis: 67

Re: First RVD treatment today, when do side effects kick in?

by Salzmav on Thu Jan 08, 2015 7:06 am

I have had NO side effects, apart from being a tad 'manic' on the dex. :D I am now on my second cycle, week 3. Everyone responds differently. We each have our own journey that we take through this - some easy, some not so easy. It is such an individual thing. xxx

Salzmav
Name: Salzmav
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 2010
Age at diagnosis: 52

Re: First RVD treatment today, when do side effects kick in?

by Dano on Thu Jan 08, 2015 9:17 am

Hello heatherlib,

I was on 7 cycles of RVD prior to my transplant in October. I had constipation, which was easily controlled with daily use of Miralax (polyethylene glycol) and Colace (docusate). The sub-Q Velcade (in my stomach) gave me a half-dollar size reaction even after using the "air sandwich" technique. The site of injection would initially be bright pink and progress like a sunburn. I did not find it to be a problem. The insomnia from the twice weekly 40 mg dex was probably the most noticeable and bothersome side effect.

After cycle six, I began to experience minor neuropathy in my feet. By the time I was in transplant, the neuropathy was severe and it has now progressed to the point were I need a walker to move about. My neurologist and my myeloma specialist think that the chemo has triggered some type of autoimmune response affecting my sensory and motor nerves. Neuropathy from Velcade is well documented, and should be addressed as early as possible.

My myeloma responded well to Velcade, but it will not be an option for me in the future.

Unfortunately, there is no way to predict how and when you may experience side effects, but I would you inform your doctor immediately of any adverse reaction. RVD is an effective regimen for induction therapy, and I hope you tolerate it.

Wishing you the best.

Dano
Who do you know with myeloma?: Me
When were you/they diagnosed?: Jan 2014
Age at diagnosis: 65

Re: First RVD treatment today, when do side effects kick in?

by Mister Dana on Thu Jan 08, 2015 2:53 pm

K_shash mentioned cutting back on his coffee to reduce the jitters and insomnia from dex. One might also cut out dessert and other sugars at dinner time on dex day.

Ativan works on occasional nights when you can't sleep.

Mister Dana
Name: Mister Dana
Who do you know with myeloma?: Me
When were you/they diagnosed?: December 2013
Age at diagnosis: 66

Re: First RVD treatment today, when do side effects kick in?

by EF11 on Thu Jan 08, 2015 6:38 pm

My husband is 3 cycles into his RVD and has found his side effects are all a little better this cycle. The off weeks have been a nice respite from the side effects, but nothing has been too hard to bear (aside from a viral flu that hospitalized him for a day near the beginning).

The dex makes him wired and snappy (Sailor Mike's wife and I could probably commiserate ;) ), and he does take a pill to help sleep on the days he takes it. Also, he has lowered his dex dose since cycle 1 because it was just too intense for him at the start. He was also incredibly constipated and takes Miralax, Colace and senna to move things along.

He gets mild neuropathy from the Velcade, which the doctors are carefully watching, and they will change his cycles from two shots to one shot a week if they get concerned. Other than that, he just gets pretty fatigued and a little foggy minded but has kept up with his high pressure job (although not so much with the 12-14 hour work days, for which I am grateful). So not so bad.

Hope you are faring well!
Last edited by EF11 on Thu Jan 08, 2015 10:39 pm, edited 2 times in total.

EF11
Who do you know with myeloma?: husband
When were you/they diagnosed?: November 2014
Age at diagnosis: 43

Re: First RVD treatment today, when do side effects kick in?

by kullybunnny1 on Thu Jan 08, 2015 9:14 pm

Heatherlib,

I found I had the usual constipation, skin rash, and neuropathy. The dexamethasone would ease my back pain, but I noticed what felt like acid reflux on the last day of my cycles.

I was also quick to anger, although I'm usually a passive person. The key is to let your medical team know of your symptoms regardless of seemingly minor issues.

Good luck and stay positive!

Kully

kullybunnny1
Name: Kully
Who do you know with myeloma?: me
When were you/they diagnosed?: August 2013
Age at diagnosis: 48

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