Pat’s Place: My Myeloma Therapy Is Working - But Not Without Significant Side Effects
I have experienced a lot medically since my previous column. Some of the news is good. But there have also been a few hiccups along the way …
Let’s focus on the good news first.
As hoped, the combination of Revlimid (lenalidomide), Velcade (bortezomib) and dexamethasone (Decadron), commonly abbreviated RVD, that I started six weeks ago is working.
My monoclonal protein number - or M-spike - has been cut in half from 0.6 to 0.3.
This is especially important in my case since I have a history of myeloma-related bone involvement, starting around that 0.6 level.
My myeloma specialist, Dr. Melissa Alsina, recommends we stay the course and continue using RVD for a minimum of several more months.
The goal: Continue to knock-down that M-protein number, hopefully to 0.0.
A sound plan -- if my body allows us to continue that long.
It seems this RVD combination is doing more than lowering my M-spike. It is also causing my red blood cell counts, white blood cell counts, and platelet numbers to crash.
Additionally, my peripheral neuropathy is getting steadily worse. Not only are my feet, lower legs, and hands numb and tingling 24/7 but my entire body feels like it’s a tuning fork.
I refer to this as “full body neuropathy.” I can feel my body vibrating from head to toe, leaving me short of breath and feeling anxious. As you can imagine, this is very unsettling and disconcerting.
That’s it? Nope. Last week, my blood oxygen dropped to an alarming 68 percent while exercising. (It should be well over 90 percent.)
This 68 percent level concerned my medical oncologist, Dr. Malhotra, so much he immediately ordered a chest X-ray and a CT lung scan.
I asked Dr. Malhotra what he was looking for. “I think you have a pulmonary embolism [blood clot in the lungs],” he said, with a look of concern on his face.
“If not, you are most likely experiencing inflammation in your lungs, caused by Velcade,” he added.
It turns out that neither one was the case. My CT scan and X-ray were clean.
My wife, Pattie, urged me to purchase an oxygen/heart rate monitor at the local drug store for $50.
A good investment. This small, battery-operated device is about the size of a Matchbox car. It showed my oxygen levels stabilizing. But it doesn’t feel that way.
Anything else? Yes. Like many multiple myeloma patients who are undergoing chemotherapy, I experience severe, nightly leg cramps, bloating caused by dexamethasone, and flu-like symptoms following Velcade infusions.
But this isn’t a “pity party.” News that the RVD combo therapy is working far outweighs any uncomfortable and inconvenient side effects.
The bottom line: I’m doing OK! And hearing from so many of you really helps. Your supportive comments make it a lot easier to carefully roll out of bed and get going each morning -- and I’m thankful for that!
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon. Going forward, his columns will be published once a month on the first Thursday of the month.
If you are interested in writing a regular column to be published at The Myeloma Beacon, please contact the Beacon team at .
Hi, Pat:
Sorry to hear that you are suffering from severe side effects of RVD. I read from a lot of the blogs, notably that of Nick, that various prescribed as well as supplement remedies, when used strategically, can help lessen the symptoms. Have you tried those? It was not mentioned in your article.
Good luck to you continuing with the treatment.
Thanks for asking, Ben! Without my extensive, carefully balanced regimen of supplements and meds, I probably couldn't get out of bed in the morning.
Some days, I barely notice I'm on RVD. Others are more difficult. Usually runs in two or three hour blocks. I know RVD patients who spend much of the day in bed. Others function as if it was no big deal. I fell into the latter group--that is until I get into the third month or so. Then it does start to slow me down.
Hi Pat...You and your wife Pattie are real 'warriors' and really, you both deserve medals for dealing with all of these health issues and still finding the time to get a column written!! So glad to hear that the counts of the 'M' protein are falling. I remember that when my platelets, neutrophils, etc. got too low when I was on 'maintenance therapy' (not the same mix of meds that you are on though), my doc would pull me off of them for a week or so between cycles to give my immunities a chance to 'bounce' back...not much of a bounce sometimes but enough to continue the meds. That did help me at the time.
Good point, Nancy. My doc has me on a weird 4 weeks, once a week Velcade cycle with two weeks off, along with normal 21 days on and 7 days rest using 25 mg Revlimid. 40 mg dex each week. It is wearing on me at this point...
Hi Pat,
You did not mention your dexamethasone dose. Shortness of breath on dex is a well known sign effect.
You may want to speak to your oncologist about reducing the dose. I can see why your doc would have thought embolism first since it can be far more life-threatening when on lenalidomide...but a decrease in the dex dosing, may be sufficient to ameliorate the side effect. Typically less than 10mg.
Yay! SO glad to hear you've gotten on a regimen that is working, Pat. You've been on my mind the past little while.
Keep it up!
Pat,
I'm sure your doctor checked all this and ruled it out..but sometimes that decadron effect is overlooked cuz of the chemo drugs being so toxic.
BTW<
You also mentioned your rbc's crashed, how is your heameoglobin?
I forgot to mention the decadron effect may be known to your doctor as rightward shift in oxygen hemoglobin dissociation curve.
Good point, Suzie! I also have a PE history... I can see how dex might cause similar issues. But I have been on and off dex for what seems like forever and never experienced anything like this. I'm on the standard 40 mg dose. Taking it orally now. Last week took 20 mg Wednesday evening and 20 mg Friday evening. I asked this question of another reader... Why even take dex if you are under 10 mg? I will drop it quickly--as soon as RVD gets my numbers down to maintenance range. Thanks!
Pat,
In answer to your question about why take less than 10 mg of Dex. Why not, if that is all it takes to get the anti-myeloma effect. Perhaps 40 Mg is overkill and unnecessary.
Jake
You take it when below 10mg..because it is still providing IL -6 suppression.
Have you seen a dose study that was optimum for MM apotosis? Is more better? Or is 10 fine just like they discovered 20mg was fine after using 40mg..and as you know that discovery was serendipitous.
More importantly, lower dosing means fewer side effects..after all dexamethasone is 10times as potent as prednisone..and some MM doctors only use prednisone.
Did you know that when the birth control pill came out in the 50's it was 100x the dose women take today.
Side effects have a way of changing dosing when they get in the way of profits for big pharma due to discontinuation.
Steroids are no different.
Happy, to hear that 20 mg is working well for you though.
Great news, Pat. RVD worked well for me....I had 8 rounds and have not had a SCT bc I have had zero m spike for about 6 months and I am putting it off as long as I can. If the dex bothers your sleep pattern, I learned on someones blog to take it at night instead of in the morning and I found that I didn't have to take the Ambien to sleep when I did that. The neuropathy in my feet did start around my sixth round and is gradually getting better. What mg of Rev are you taking? I started with 15 going up to 25 which kicked my butt and caused a terrible rash on my upper torso...but it worked and I have been blessed with ZERO m spike. Now I am only on 15mg maintenance of the Rev. Thank you for all of your info, you are a real blessing to all of us in this MM war!
just wondering have been off revlimid maintenence for 5 months now
you said your bone activity got higher with protein spike, my clavicle was my original break and has been feeling worse the last week or two my next dr visit is in two weeks, may have a spike also affecting bone activity
Geez Pat, what a bunch of miserable side effects. They could be summed up simply as "multiple myeloma sucks". One of the worst features of the MM chemo side effects is that they are unexpected. At Mayo they put us through a chemo "class" in which they described the classic side effects (nausea, vomiting, hair loss, etc.) but said nothing about the more disturbing effects of MM chemo such as heavy swelling and shortness of breath. The MM docs and nurses could ease the anxiety of these effects if they did a better job of letting us know what might happen.
And I totally agree with Suzierose about dex dosing. I was on 40 mg/week for 4 months at which point I started experiencing atrial fibrillation. My doctor then cut the dosage to 10 mg which resolved the afib problem and didn't seem to reduce the anti-myeloma effect.
Hi Pat
My dex dose was gradually reduced to 10 mg as my m-spike slowly diminished. After a year of treatment the dex was driving me nuts, so we tried eliminating it entirely and discovered that rev worked just fine for me without any dex at all. Without the dex my m-spike ultimately dropped down to stringent complete response over the next six months, and remains there now with 15mg rev/day. I now wonder if it was necessary to take it at all, although I'm fairly certain that it will be needed again when the beast reawakens.
Bottom line: you may not need the dex.
FrankH
I, too, was on the RVD routine for a good year after which the Valcade was on/off due to neuropathy and low blood counts. I have remained on Revlimid, origionally 25mgm, reduced to 15mgm and last dosage at 10mgm. Dex has remained constant at a dosage of 20mgm/week. I take this at bedtime and can sleep that night but wide eyed the following nite. Presently I'm not on chemo due to neuropathy and trying to decide about SCT which is difficult being high risk and allergic to most antibiotics. Have to consider quality of life versus quantity. Not an easy decision to make. My MM counts have never been lower than 1.65 but it does remain fairly constant. I feel you are doing great even with the side effects getting you down. I'd give anything to have a low MM count but am doing well and that's what counts. Your comments keep me going and the info is so useful. Positive attitude is what it's all about. Hang in there, Pat, as we are all with you in this fight.
Thanks to ALL of you that recommened taking DEX in the evenign! I am going to try that!! Cuz, I would rather be zooming in the day than at night!!
Thank you, I learned something!
Pat,
I went thru the same chemo regimen for five and a half months this year and yes, it's very, very rough. But it worked for me as it brought my M-spike levels down to what was described as "too low to even register" and I was able to have my stem cells harvested for a future transplant if its needed in the future.
I was educated on the side effects but I wasn't prepared for the mental/emotional effects as I struggled with depression issues. But the support of family and friends around me helped me get thru it all. Now I take 1 pill of Revlimid daily as a maintenance therapy (which does have some side effects to it)and I'm able to live a normal lifestyle without the need of a stem cell transplant. The goal now is to work off the weight I put on from the dex! Sadly, getting rid of weight is much harder than putting it on...
Almost anything is worth it as long as it works, right John? You are right about something else, too. Dex isn't very good for one's body image! I hate the water retention. Fortunately, no permanent weight gain yet. Good luck with all of it... What a hassle! Sorry you/I have to go through all of this. It isn't fair, is it?
Hi Pat, from the severity of your side effects, I wonder if you're receiving Velcade via subcuetaneous injection. SubQ has become standard at Hackensack. Thanks for your posts. Good luck, Charles
Yep, sub-q. It isn't magic. Statistically does help a lot with PN. But mine is already so bad, unrealistic to expect it to be perfect...
Hi Pat,
Sorry to hear you have to go through so much! As you recall, you and I had our SCT's within a few days of each other. After my second SCT I still have a higher Mspike than you. (And no, this isn't a case of my dad being bigger than your dad). If my numbers stop dropping, I'll probably be in the same boat as you in January.
I looked through your columns the other day and...wow. What a great source of information you are providing for others! Thank you so much for what you do. And good luck with hammering that Mspike.
Hi Pat,
Didn't you write a column on diet and myeloma?
Thanks, Stan
Hi Stan,
You may be thinking of a series of articles that Pat did a while back on nutritional supplements. Here are links to the articles:
http://www.myelomabeacon.com/headline/2010/12/16/pats-place-taking-nutritional-supplements-is-like-walking-through-a-mine-field-for-multiple-myeloma-patients/
http://www.myelomabeacon.com/headline/2010/12/23/pats-place-nutritional-supplements-that-i-take-as-a-multiple-myeloma-patient/
http://www.myelomabeacon.com/headline/2010/12/30/pats-place-reasons-why-multiple-myeloma-patients-should-use-or-avoid-certain-nutritional-supplements/
http://www.myelomabeacon.com/headline/2011/01/06/pats-place-can-curcumin-resveratrol-or-other-nutritional-supplements-help-fight-multiple-myeloma/
Best of luck!
Thanks Staff!
There's a lot of interesting info there--thank you.
Stan
You bet, Stan! Glad to help...
Dear Pat,
Thank you for writing this column. I stumbled onto your article while searching for information about Velcade side effects in maintenance therapy. I just completed an 8 month clinical trial of DVD-R (Dex, Velcade, Doxil) and Revlimid. It worked; I am now at zero. Hurray!
It has been a rough year for me as well, including the ups and downs of random illnesses, fatigue, heavy chemo brain (seriously) and of course, peripheral neuropathy.
Just keep on writing. You have created a kinship that I and others appreciate and need. I hate this cursed illness but I am determined to savor life the best I can.
Stay well friend,
Ralph
Dear Pat,
Glad to hear that your numbers are decreasing. Hope the side effects are eliminated soon. I watched a piece on CNN last night about a 70 year old marathon runner with multiple myeloma. He is on some kind of experimental therapy and it is keeping the disease under control. He is still running marathons. The regimen was not discussed but I think we all would be interested in finding out about his therapy. Maybe you could investigate this. His name in Don Wright.
Dear Pat,
I just read your article about Don on your blog after I posted!!
Sorry I should have known you would have already got the info out to the public!! Thank you for all of you invaluable information. I wish you all the best. I was diagnosed with MGUS in June as a 45 year old woman. Given the stats I never thought I would be at risk. My father however died from Multiple Myeloma at age 79, there must be a link. Also, have you heard of the relationship of MGUS and Chronic EBV virus??
Nicole, here is a link to the CNN story about Don.
http://thechart.blogs.cnn.com/tag/don-wright-special-to-cnn/
Don also maintains a blog, "Myeloma Hope," which might interest you. Here's a link to it:
http://myelomahope.blogspot.com/
Don's blog is one of the many myeloma-related blogs we include in the Beacon's "blog aggregator." You may find it useful. Just click on the "Blogs" link in the Beacon's menu, or click on the link below:
http://www.myelomabeacon.com/blog-posts/
Hi Nicole-
Yes, Don and I are good friends. I have followed his use of the experimental drug, pomalidomide, carefully for four years. There are a number of Myeloma Beacon articles about this drug, which may be the most promising of all the new therapies. No, I'm not familiar with a connection between EBV virus and MGUS. And yes, I also believe there must be a reason myeloma can run in families. A study was released last week which touches on this subject. And YES! I'm glad my numbers are going down, too! Thanks so much for reading--and your support.
Glad to see that things are going well for you. My m-spike is 1.6, creeping up from 0.8 earlier this year. I had already told my oncologist and transplant physician that I was not taking any form of medicine until my m-spike gets to 2.0 g/dl. The reason: I have horrible PN now and the therapies, Velcade, Revlimid, and Thalidomide, will make it worst. I have been dealing with PN for three years now and my quality of life is pretty bad. I have opted for another stem cell transplant in lieu of drugs that further aggravate my existing PN. The chronic pain of dealing with PN is exhausting. I admire those of you who can work through it. I am on a low dose of pain killers just to make it tolerable. I am afraid to use a higher dose because I want to reserve it for any future increase in pain.
The drawback to my decisions is the possibility that I am doing additional damage to my bones. I guess we all have to do what we can in our best interest.
So sorry your myeloma is active again, Roslyn! You are a good example of someone for whom a stem cell transplant makes perfect sense. But please be careful and don't wait too long...
Pat,
Thanks so much for your column. I read it all the time and encourage my father whom has multiple myeloma to read it. He too suffers from neuropathy from the chemo and is on some of the same drugs you are on!!! As I pray for him every night i will shoot you out a prayer tonight!
Jen
Good luck to you friend. I wish the best for you in this journey. A MM friend.
Thanks, Jennifer and Jeffrey! We all can use more prayers and friends!
Pat,
As always, thanks for sharing you time and yourself with us through you postings. My wife was 'on' RVT for a long time and it WAS helpful for her. And yes,the side effects were not so pleasant. Thankfully, other than pn she is living a full life. Thanks again for showing all of us your strength. Your in our prayers.
And that's the key, isn't it, Forrest? We put up with a lot so we can hopefully live a near normal life in the near future. The ultimate deferred gratification! Thanks for reading--and glad she is doing well!
So glad to read that your m-spike is coming down. So sorry to read that your side effects are such an issue. Reading your account, and the postings of others, I realize how fortunate I've been with the Carflizomib/Revlimid/Dexamethasone (CRD) that I'm on. I have had no issue with PN. I do experience the bloating, leg cramps, and jitters though, usually for 2-3 days afeter infusion. Most of that we think is dexamethosone related, though I also get Zometa the first week of each cycle and that seems to increase the effects, particularly the cramps and jitters. Don't know if you take Zometa or not, or at what rate. If I get it at a slower rate, that seems to help some. I'll continue to keep you and the others in my thoughts and prayers.
Kevin-
Zometa doesn't seem to bother me much. Carfilzomib? Good for you! Glad it's working. Now they need to figure out how to get dex out of the mix....
Hi Pat, I keep hearing that dex has bad effects and wonder what its role in the mix of meds is, Is it worth negative side effects? Is there another alternative that would be easier on our bodies? Karen
Researchers seem convinced that adding dex to darn near any therapy improves the results. But then the standard 80 mg a week dose was dropped to 40 mg. Some patients take a lot less. On maintenance, I wouldn't use dex unless my doctor (more than one) said it was absolutely necessary. But it is inexpensive, and it does help...
We hope that you are doing well, Pat. Your writing is informative, helpful and always thoughtful. Now, how are you feeling and have your 'counts' been. It seems that you have had a pretty rough ride and yet we don't pay much attention to Pat. Your a trooper and the best to you and yours. Wishing you a Merry Christmas and a good healthly new year.
Thank you for the kind words, Forrest! I only write my column once a month now... Watch for January column on first Thursday of the month.
Best wishes to you and your family for the holidays and the New Year, Pat! Will look forward to reading your column in January. It is always very interesting!
Thanks much, Nancy! All the best to you, too...
Thanks to everyone writing on this website. Lots of very helpful information. I was diagnosed with Plasmacytoma about a year ago and my diagnosis was revised to MM a few months later, after having several more plasmacytomas. A year later, 7 cytomas later and five rounds of 10-day radiation treatment regimes, I'm starting the RVD this week. I'm 46, have .38 M protein and no issues other than the plasmacytomas. This has been a very tricky one to track and to figure out what the next step is. Although I secret a little bit of the M-protein, it's not enough to indicate a tumor - as was recently discovered. The 2 PET/CT scans I've had have also only shown the one tumor I had at each of those specific times and already knew I had them. Very frustrating and I'm thinking that this "oligo-secretory" disease is much like "non-secretory." My Dr. was going to start me with just the Revlimid and Dex and I decided that in spite of the nasty side-effects - to include the Velcade, as one well-known Dr. recommended, in the case of the plasmacytomas. Anyway - long story short is that right now in spite of this past year, I feel like a very healthy 46 year old. I'm super scared of taking these drugs and also of how we'll be able to track my progress, aside from having another plasmacytoma. I think going for this more aggressive treatment is the right thing to do for the long run, but it feels strange. No SCT at this point, but may harvest my cells when the regimen is completed. Thanks to everyone for any support or advice you can offer.
Newly diagnosed MM in Virginia.......
Amy-
Believe it or not, it gets easier--on so many levels--once things get settled-in and you are more "experienced." Readers here have lived five, ten, even fifteen years with myeloma. Never easy, but I remember the first three months were definitely most difficult for me. Best of luck! And don't fear the drugs. It is a tricky relationship, but without them, I wouldn't be here writing you this Easter evening...