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Pat’s Place: My Treatment Side Effects Keep Changing

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Published: Jan 5, 2012 1:34 pm

I learned this week that my post-stem cell transplant consolidation therapy is continuing to work.  But the side effects are becoming less predictable.

My monoclonal protein number — also known as M-spike — has been dropping ever since I began consolidation therapy with Revlimid (lenalidomide), Velcade (bortezomib), and dexamethasone (Decadron), commonly abbreviated as RVD.  After two 6-week treatment cycles, my numbers are back to where they were just before my autologous stem cell transplant.

As many of you know, my M-spike was 0.2 prior to undergoing a stem cell transplant for my multiple myeloma.  To everyone’s surprise, my M-spike went up to 0.6 at the three-month post-transplant mark.  Thankfully, my M-spike was cut in half to 0.3 after my first RVD consolidation cycle, and now it is down to 0.2 again after my second cycle.

Thank God it’s heading in the right direction!  I really feel like I dodged a bullet this time.

That’s the good news.  But there is a dark side to all of this.

I definitely feel RVD more now than I did before.  Making matters worse, the way my body reacts to therapy these days keeps changing.  It’s hard to hit a moving target!

Before my stem cell transplant, I could rely on past experience to anticipate which drug would cause certain side effects, and when those side effects would occur.

But six months after my transplant, nothing seems to be reacting like it used to.  Let me share some specifics with you.

My doctors used RVD before my transplant as induction therapy — and post-transplant as consolidation therapy.

During induction therapy, I could plan on certain side effects like clockwork.

Following my once-a-week Velcade infusion, I would feel lousy, stiff, and as if I had the flu that evening.  But by the next morning, I would feel much better.

Revlimid didn’t bother me much — even taking the highest 25 mg dose.  After all, I had been taking varying doses of Revlimid for over four years.

And I could anticipate how I would react to my 40 mg-a-week dose of dexamethasone.  I would feel a bit anxious and “up” for two days, followed by a manageable “crash” that left me tired and sluggish for six or eight hours on the third day.

Like clockwork, I learned to anticipate how I would feel on which day and why.  This made it easy for me to plan my week and to limit the impact of my therapy.

All of that changed after my transplant.

Forced to resume RVD when my transplant didn’t work, one would think that I could again anticipate how my body would react to the same therapy.

But not only has that not been the case, how I feel seems to change with each passing week.

There has been one change for the better: getting Velcade subcutaneously instead of intravenously.  I no longer feel as bad immediately after treatment.  That’s the only part of therapy that I can count on.

Revlimid — which previously didn’t bother me much at all — now knocks me on my butt!  I feel bad on and off every day I take it.

The hardest part is there doesn’t seem to be any rhyme or reason as to how bad I will feel or when.

And the way that I react to dexamethasone (dex) is all over the map.  Sometimes my energy level is up the day after I take my dex, sometimes not.  The same goes for the second day.  Sometimes I feel “up,” sometimes I don’t.

What good is taking dex if you don’t get the two-day “high” that follows?  And my crash is much more pronounced — regardless of whether I experience an increase in energy the day or two before.

Making matters worse, the combination of Revlimid and dex leaves me feeling dizzy and disoriented on and off for up to four days.  And again, there doesn’t seem to be a pattern that I can anticipate.

How do I know which drug is making me feel which way?  I have been able to isolate my symptoms by staggering my rest week: one week I rest from Revlimid, taking only Velcade and dex; and on a later week I rest from Velcade, taking only Revlimid and dex.

I even worked it out so I would take dex early or late in a given week.  This allowed me to isolate how I felt dex-free while taking the other drugs.

An interesting experiment.  Now if only the results didn’t keep changing from one week to the next.

But as long as my numbers are heading in the right direction, I guess I can put up with just about anything.

I’m anxious to learn what my long-term maintenance regimen will be.  But I’m sure I will need to be on full-dose RVD for at least one more 6-week cycle — and probably for one or more additional cycles as well.

It should be an interesting ride.  I’m sure most of you will agree that having multiple myeloma is never dull!

Until next month, feel good and keep smiling!

Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon.

If you are interested in writing a regular column to be published at The Myeloma Beacon, please contact the Beacon team at .

Photo of Pat Killingsworth, weekly columnist at The Myeloma Beacon.
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53 Comments »

  • Kent Bradley said:

    Glad to hear your M-spike is still headed in the right direction Pat. The side effects must be frustrating. Will keep praying for you and hoping your side effects will become manageable. I’m due back at Moffitt on 2/7 to hopefully confirm I’m still just smoldering.

  • Sean Murray said:

    Yikes, Pat! I am sorry to read of the topsy-turvy side effects that you are encountering. I’ll pray that your reactions not only get better, but fall into some semblance of a manageable pattern.

    I’ve been on maintenance RVD for 2+ years (15mg Rev, 20mg dex, 2mg of Vel) and the weeks are still a bit unpredictable – though not nearly at the extreme that you’re currently facing. Perhaps it is because you are so near your ASCT? I have heard from many patients that they ‘feel’ out of sorts for a year or two post transplant. Not sure how they can transfer that ‘feeling’ to ‘fact’,that the transplant is the offender, especially if they continue treatment with maintenance drugs, etc. My ASCTs were in 2/09 and 5/09, maintenance began in 11/09, after two rounds of consolidation chemo (VTD-PACE).

    I wish that I had the luxury (or the guts!) to stop 2 of the 3 meds for a bit to pinpoint the culprit. I know it doesn’t work that way, though! Hope that your month continues to get better. See you over at your other MM sites. Happy New Year!

  • Pat Killingsworth (author) said:

    Thanks Kent and Sean-

    Interesting about your RVD side-effects and dosing, Sean. We are starting to discuss what my maintenance plan will be–probably after two or more full 6 week RVD cycles. Sounds like yours is working for you…

    A couple of things. First, Even dropping Revlimid dose down to 15 mg would help me a lot. Same with 20 mg dex vs 40 mg. Once weekly sug-q Velcade seems to bother me the least.

    So if I was on you dosing, Sean, I would barely notice it, too. Glad you can manage side-effects… I will be right there with you soon!

  • Mike W said:

    Hi Pat – I am sorry you are going through these tough unpredictable days.
    Up to now I was considered smoldering. However, the disease has progressed and I will be starting treatment in a few days. After reading yours (and some others) experiences I am very scared and concern. I will be participating in the clinical study that includes MLN9708, Lenalidomide and Dexamethasone. I am completely overwhelmed by all the information.
    Good luck to us all. Hope 2012 will bring us closer to the cure.

  • Sarah Gorrell said:

    Pat: So sorry you’re having to go through this (heck, I’m sorry anyone is having to go through it!).

    I am glad to hear that my honey isn’t the only one with “changing side-effects”. I recently wrote, in my blog, that I’m not a pessimist but I just know when one thing clears up …… there will be something else with which we have to deal. Changing his BP meds upset his system, so something like chemo (Revlimid has been okay) and Dexamethasone (never know what to expect)is not forgiving. One day, he feels great and the next is a lying down, covered up, on the sofa kinda’ day.

    He’s in CR without a SCT, and is on maintenance chemo. I had thought that being in CR would mean he would be free of pain and would feel good. But MM is full of surprises.

    Keep that M-Spike headed downward!

  • Pat Killingsworth (author) said:

    Hey Mike-
    I understand how you feel! But you know what? With some luck (and you are probably due!) it really shouldn’t be so bad. Exciting you are trying the new oral Velcade–and that you are in a clinical trial! Good luck!

  • Nancy S. said:

    HI Pat…hope your doses of the meds will be able to be lowered soon…in the meanwhile, take good care of yourself and try to get lots of rest…at least, that is what I needed after the stem cell transplant. That is a very enervating time…have never been so tired, ever! Energy did return later though, for the most part.

  • Pat Killingsworth (author) said:

    Sarah-
    Your husband should be able to drop the dex soon if he stays in CR. Some are also trying 20 mg instead of 40 mg for maintenance. I know it isn’t easy for either one of you… I’m just glad he is doing so well!

  • Pat Killingsworth (author) said:

    You, too, Nancy! I’m glad your energy level is back up and you are doing well!

  • suzierose said:

    Hi MikeW!

    That’s sounds like an excellent combination and the results from ASH2011 demonstrated very good responses. You are very fortunate not to have to do IV therapy. I am curious though why they would use a 3 drug regimen right out the gate vs. simply have you on lenalidomide along with dex or even MLN9708.

    Perhaps, Dr Voorhees, from UNC would care to share more with us, as he did the presentation at ASH where there was a 100% response using this 3 drug regimen in the newly diagnosed.

  • Kansas said:

    Pat, so glad your number is going down. Not surprising your system seems messed up – as Rex’s GP put it — your stem cells are all out of whack. With everything you’ve been through, seems like you are dealing with it quite well. Our very best wishes for continued success with treatment – hang in there! Rex and Kay

  • Kevin J said:

    Pat, glad to hear your M-Spike has come down. I wonder if the SCT has perhaps made it more difficult for your body to regulate the side effects from the RVD. With my CRD treatments, I have a few side effects that are consistent, and several that seem much less predictable. Fortunately they are all at a very manageable level, but I imagine if my body were dealing with recovering from a SCT those effects might be much more pronounced. I sure hope everything improves as time goes on, particularly if you can reduce some of the doses (reducing my dex from 40mg to 20mg two cycles ago practically eliminated a couple of my side effects).

  • suzierose said:

    Hey Pat,

    So glad your making progress and that you are feeling a lot better about the decline in your M spike.
    BTW, you may also find some peace of mind in knowing that an elevated M spike can also be due to an acute inflammatory process which could be present independent of MM.

    I can imagine the unpredictabiltiy of side effects would be annoying and somewhat frustrating as it does impact QOL. We get so use to scheduling our daily lives by mangaging and maximizing the time we feel good.

    Also, I am completely with you about the Dex ‘uplift”, lol…what good is it to crash with no lift off!!

    I suspect that in the next week or so you are going to see the vicissitudes of drug therapy level out and have much more manageable time on your hands.

    I will pray for you to have the predictable balance that makes life with MM much more liveable.

    Thanks for sharing all that you did…
    and
    Happy New Year.

  • Pat Killingsworth (author) said:

    Thanks Rex, Kay, Kevin and Suzie! Sounds like you all understand what I’m going through! I’m 24 hrs out from my 40 mg dex and feeling pretty good right now…

  • Jan Stafl MD said:

    That’s right Pat! That Dex can make you feel like Coach Chip Kelly of the Oregon Ducks during the Rose Bowl. Living in Eugene, the home of the Ducks, the victory over the Badgers was sweet. Check out YouTube of Chip Kelly, jumping high on the side lines, like shout! Hope your side effects and labs continue to improve. Laughter is good medicine too, as you know. Jan

  • clifford said:

    How is my M-spike number related to my (elevated) IgA number? Is following the changes in my IgA a good way to mark progress or lack there of my treatment? My blood work report shows my IgG,IgA &IgM but nothing mentioned about an ‘M-spike’ or “M number”.

  • Nancy D said:

    Pat: We all like to know what to expect from our treatments and their side effects. It is easier to deal with… a few bad days, then a predictable improvement or at least more tolerable. But the wild card is our bodies response and MM’s response to the treatment. The longer we are in treatment, the more unpredictable the response.
    Hang in there!

    Mike W: How long were you smoldering???

  • Mike W said:

    Hi Suzierose and Nancy D – I am not sure why they using 3 drug regimen right out the gate. I think this is a protocol fot this clinical study. I guess it showed better results when they are used right away. I was smoldering for 2 years but my blood results were getting progressively worse. My m-spike now stands at 4.6

  • Terry said:

    Hi Pat (also Mike W. and Kevin J.)
    I am smoldering but may progress soon due to the A in CRAB. I am monitored at both the NIH and UPenn. I will face a dilemma as to where to get treated. The NIH will probably offer to admit me to a trial which involves Carfilzomib, rev and dex. At Penn, I will probably be offered the standard combo. Dr. Landgren, whom I highly respect as a leading expert on myeloma, at the NIH says the trial has been having fantastic results and, I believe, is the same one Kevin was in at Michigan. I also like Penn and my doctor there and the fact that Penn has one of the world’s greatest gene therapy research centers i.e. remember their internation success this summer with the three CLL cases—that same approach is being tried there now with myeloma. Do I take a shot at the new combo or stick with the more tried and true. I am 49 with a wife and two young kids, so I am pretty anxious and a lot rides on this decision. Any guidance would be helpful. P.S. Penn would probably push for a SCT and the NIH doctor seems less bent on that approach–he doesn’t like the hammer approach. Thanks to all of you. Terry dx. 8/10/11 light chain only kappa restricted–high risk smoldering for now.

  • Ben S. said:

    Hi, Terry:

    My wife was also diagnosed in August and is in the smoldering state. She is due for a checkup in a few days and we are worried that she might see her “A” getting worse as well leading to treatment. We live in NJ as you do and she is now being monitored at Memorial Sloan-Kettering. In terms of treatment choices, we are at a less definitive stage, because we are tempted to consider the Arkansas approach because of the better survival curve coming out of Arkansas. Have you considered this aggresive apporach before dismissing it? I would love to hear your view on this. Also, it is exciting to know that UPenn is trying to repeat its success on the CLL patients in MM. Can you point me where I can read about the new experiments? I scour the ‘net but found nothing. Many thanks!

    Ben

  • Pat Killingsworth (author) said:

    Ben-
    I do recall reading something about the CLL story. I will see what I can find. Maybe the Myeloma Beacon staff can help as well…

    About Arkansas (UAMS) and your wife’s situation. It is so hard to “watch and wait” once one learns they have active or smoldering myeloma. But this is a marathon, not a sprint. I applaud UAMS for their aggressive approach and willingness to try a lot of different things. I would never discourage someone from going there. However, with so many new myeloma drugs in the pipeline, I would think long and hard before starting Total Therapy, a five year or longer program using heavy dosing and lots of drug combinations–plus tandem transplants. Why? A more moderate, measured approach allows a patient to live a better quality of life, while buying time for new therapies to emerge. In other words, I’m not sure she will need to be that aggressive at this point, because new drug combo’s like pomalidomide/carfilzomib and dex may soon change the treatment landscape, buying a patient years of extended life. And with so much research being focused on myeloma lately, the plan would be to be around as these new therapies emerge. Something to think about… Good luck to you both!

    [Beacon Staff: Here is the Beacon's coverage of the UPenn gene therapy trial involving CLL patients:
    http://www.myelomabeacon.com/news/2011/08/12/gene-therapy-advance-in-leukemia-suggests-new-treatment-options-for-multiple-myeloma/ . ]

  • Ben S. said:

    Thanks, Pat, for your comments. It’s a weighty decision and we are really torn. At the meantime, we are praying the numbers will be good enough so we can buy another 6 weeks without treatments.

  • Terry said:

    Hi Ben, The Arkansas approach scares me at this point, and frankly, at my age, 49, I need to work in order to maintain my excellent health insurance. According to the Arkansas protocol, I would quickly use up all of my sick leave and be left out in the cold without a job and no way to support my wife and kids. I also had a second opinion at Hackensack which has a similar approach to Arkansas and was simply not ready for such an aggressive approach so soon. However, maybe that approach would be best for me…who knows…at least I have options. The UPenn Trial is a joint trial with U of Md. Dr. Stadtmauer from Penn, Dr. June from Penn and Dr. Rapoport from MD are involved. There is even a youtube video featuring Dr. Rapoport. At this stage, it is for people undergoing a SCT who then are reinfused with their genetically altered T cells. I don’t know if there are preliminary results, maybe someone from the Beacon could call Dr. Stadmauer, Dr. June or Dr. Rapoport for an update. It would be great if it worked like the CLL trial.

  • Pete N said:

    A New York Times article on the UPenn Abramson Center success with killer T cells for CLL can be found here:

    http://www.nytimes.com/2011/09/13/health/13gene.html?pagewanted=all

    Two clinical trials using the same technology specifically for multple myeloma patients can be found here:

    http://clinicaltrials.gov/show/NCT01245673

    http://clinicaltrials.gov/show/NCT01352286

    I hope this helps.

    Pete N

  • Bill O'Halloran said:

    Mike W.,

    I was in your situation last July. I progressed from smoldering to active MM, with an M Spike of 2.1. I enrolled in the 3-drug MLN9708 clinical trial (along with Revlimid and dexamethasone). I am happy to report that after 5 cycles of treatment, my M Spike has completely disappeared, the imnmunofixation is negative, and I seem to reached a Complete Response (CR)! I have suffered almost no side effects, other than the typical dex-related energy fluxuations. I hope you respond to this amazing protocol as well as I have.

    You can follow my progress on my blog or email me directly for any questions or concerns about my experience with this treatment. Good luck to you, Mike

  • Kevin J said:

    Clifford, I have been plotting my M-Protein and IgA reduction since I was diagnosed and found that they mostly mirrored each other. The only time they didn’t was when I had a sinus infection, which caused my antibodies to go up to fight the infection. Also, the test for M-Protein is only sensitive to 0.1, so I have been at 0.1 for several months, yet my IgA continues to drop indicating I’m still coming down (hopefully to CR).

  • Kevin J said:

    Terry,
    The Anemia was also what triggered my diagnosis of active MM. I chose the CRD trial because I felt it had the potential to give me at least a few years with good QOL and postpone the SCT, which frankly scares the heck out me. Avoiding the SCT was important for me because I was in good shape physically except for the anemia, and I wanted to continue working full time. Plus, in another few years, something as good or better may come along (like the gene therapy at Penn). Obviously, everyone needs to make their own choice, but for me, as long as I’m still physically fit and relatively healthy, I’d like to stay that way until the disease forces me otherwise.

  • Nancy D said:

    I think the hardest part of having MM is the treatment choices that the patient has to ultimately make. Your second visit your doctor tells you the stats, and rattles off the lastest protocols, and says basically “it’s up to you” and “you can change your mind”. As patients we’re not used to being so interactive in our treatment plan.

  • Terry said:

    Hi Nancy, you hit the nail on the head. It is so difficult to know what to do, especially when so much rides on the initial decision. I also have two doctors and they seem to have different philosophies-one tradition induction, etc. and the other who doesn’t seem to favor the hammer approach and has novel trials. Not having a crystal ball as to what to do is super frustrating. I also don’t know how people are able to financially swing the aggressive Arkansas approach unless they are independently wealthy. How does one maintain the job to maintain the health insurance for such extensive and time consuming treatment? How do younger middle-class patients, who are not on Medicare, swing it? Thanks. Terry from NJ

  • Monica S. said:

    Terry – If you want to do the aggressive treatment, look into FMLA. Your employer should allow you 3 months off a year and hold your job. Now, you might have to pay for your own health insurance during that time (if you run out of leave and have to pay the full amount), but the Leukemia and Lymphoma Society will reimburse “your” health insurance premiums(even multiple policies) and doctor/drug copays (if related to MM in any way). The Chronic Disease Fund will also pick up most of the premium for expensive drugs like Revlimid, leaving you to pay only $20, which LLS should pick up. Also, a lot of health insurance policies will pay travel expenses for transplants if you travel over 50 miles. When it comes to protecting my financial situation – I’ve become an expert! We have barely paid anything out for medical in over 4 1/2 years, and that included a full month in Arkansas(we rejected that route) and 2 SCTS at Barnes-Jewish in St. Louis. Look into these options – they may help you decide the course you want to take by eliminating the barriers.
    My husband is having good results with clinical trial elotuzumab/Rev/Dex. M-Spike dropped from 1.18 to .7 with 1st cycle.
    Good luck to everyone dealing with this crappy disease!!

  • Nancy S. said:

    Hi Pat and All, Didn’t you separate the stem cell transplant into two, Pat? That is, you got your stem cells harvested some time ago and then decided to do the transplant a few years later? If that is right, then at least you divided up the taking of heavy chemo into two parts also…
    cyclophosphamide is used in the harvesting (strong enough to lose your hair). The stem cells can be frozen in liquid nitrogen until such time as you need them. I still have the other half of my stem cell collection frozen at the hospital in case I need them in the future. Going through the harvesting and the transplant in a matter of about a month was undoubtedly the toughest physical trial I have ever had…I think it was worth it, due to the results I got, but I can certainly understand others’ hesitation at taking on such a big procedure! It seems to me that just the harvesting of the cells is lower risk than the whole transplant, and it could keep your options open down the road, while making the SCT less onerous too. Of course my fondest hope for treatment is that in the future stem cell transplants won’t be necessary at all! The exciting ongoing research and focussing of brilliant minds on the problems of MM bode very well for that outcome.
    I sympathize with the financial issues facing cancer patients…illness never comes at a convenient time.

  • Mark said:

    Terry,

    Sorry to hear that you may soon be joining us in the “active” ranks. New therapies are in the pipeline, but it does take time for them to become approved and for patients to get access to them. One thing that I find surprising is that Doctors will expose younger patients to both of our best classes of drugs in an upfront setting. IMO, that is sprinting and not treating this like a marathon. It is very likely that Revlimid/Velcade or Carfilzomib/Dex is the most active 3 drug combo, but is it necessary or ideal to use them right away? I would ask your Doctors that question. Pat did his usual excellent reporting job from ASH on the statistics for patients that are relapsed and resistent to Revlimid/Velcade.

    For example, I was diagnosed at stage 3 with 90% marrow involvement. I had four cycles of Velcade/Doxil/Dex and that got it down to 10% (though my cycles were of double strength from most studies – so it may have taken 8 with normal dosing). Since you are not as advanced as I was, you may be able to treat down to CR without using both classes. Another thought is that Revlimid used as Maintenance (if you and your Doctors are planning to go that route) should be more effective if you had not used it during Induction.

    As we all know, there is no right answer. You are a very educated patient and you will be treated at a top notch facility either way, so things will work out well for you.

    Mark

  • Angie said:

    Clifford asked how the M-spike is related to his elevated IgA number. Our bodies produce 5 different types of immunoglobulins: IgA, IgD, IgE, IgG, and IgM. We can produce any one of these depending on whether we’re fighting off an infection (IgG or IgM) or have allergies (IgE), etc. In our case, we tend to produce huge quantities of one of these. The method used to measure our immunoglobulins is called electrophoresis, and the results are read by a piece of equipment that gives the lab a picture that usually looks like a set of gently rolling hills (sorry, I don’t have a visual to add here). With MM, one of those rolling hills becomes a huge pointy mountain or spike. Since MM generally causes only one immunoglobulin to spike, it’s called a Monoclonal spike (mono means one) or M-spike for short. So in your case your M-spike is all about your elevated IgA; your body is producing large amounts of IgA. In my case, it’s IgG. In someone else’s case, it could be IgM. So it differs with each one of us. The equipment reads the height of the spike; that’s where they get our numbers of 0.6 or 0.2 or whatever. Hope this helps.

  • Angie said:

    Pat, as I read your article I could only say to myself “Thank God I don’t have these extremes”, but that could just be for now. You give us an idea of what we might expect to happen down the line. Have your symptoms gotten worse over the years of your therapy? Were they like this before the transplant? We pray that these settle down for you, back into a predictable set of reactions.

    I have some risk factors that have put a transplant way on the back burner, and I was initially disappointed that we couldn’t go that route. Now I’m not so sure. Maybe continuing to do chemo is the better way to go right now. How have others felt post-transplant–better, the same, worse? What chemo strategies are you using? Thanks.

  • Monica S. said:

    Did you know there are 4 kinds/types of IGg? After my husbands 2nd SCT he had 2 M-spikes – lambda and kappa, both IGg. (Never achieved CR.) At relapse, the kappa disappeared. After 1 cycle of Elotuzumab/Rev/Dex, he has 2 spikes again, both kappa. The doctor explained there are 4 kinds of IGg and he has 1 and 3 showing up. I walked away thinking I will never understand this disease….

  • Terry said:

    Monica, Mark, et al. Thanks for all of your insights. This has provided me with a lot of food for thought. This is, indeed, a crappy (what a euphemism!!!) disease and it is comforting to know so many great minds are working on a cure or something that comes close to that lofty goal. You all are the best and so brave! Terry

  • Nancy D said:

    Monica: Thanks for the information on the insurance and finances. I have been worrying about being able to continue my insurance payments as I battle MM. Now I know more about assistance if I need it.

  • FrankH said:

    Hi Pat

    So, at this point would you say that the SCT was worth the effort, or not? If you had it to do over again, would you?

    FrankH

  • Monica S. said:

    Pat,
    I think you should write an article about finances, and for people NOT to wait until they are out of money to pursue the assistance. Too many are letting their pride..or whatever..stand in the way of using the financial assistance available. LLS has been a godsend to us, and I try to convince all with a blood cancer to use their resources. Most don’t want to “go on assistance”, but that is what it is there for. And it is such a relief to know that you can continue to afford one or more health ins. policies that will cover everything coming down the road-and have LLS pick up the premiums(yes, plural). There are several great organizations that have funds to help people, if they will only apply. Please spread the word! Thanks.

  • Pat Killingsworth (author) said:

    Wow… I was in Charlotte for a quick up and back visit. Sorry I didn’t keep up with all of the comments!

    Working backwards, Monica’s idea to deal with myeloma related financial issues is a great one!

    The transplant issue is a complicated one. At ASH this year, my impression was the vast majority of myeloma experts feel auto SCT is still an important part of the process for most any patient who is young and healthy enough to try. I don’t have any regrets about trying. But to answer Frank’s question, if I knew now how things would turn-out, I would not have proceeded. But more specifically, I’m disappointed in how straight-up, traditional high dose melphalan treatment is used by itself in the vast majority of procedures. What would I change? I would ask my doctors to try a more experimental combination of high dose chemo during the transplant process, since it is clear that melphalan alone did not work as it was intended in my case–it didn’t kill anywhere near all of the myeloma cells in my body…

  • Ben S. said:

    Thanks, Terry. I completely understand your concerns about job and insurance. I would also add the consequences of being away for long periods of time when our kids have to go to school and attend activities every day. They all become a heavy burden to make the disease and its aftermath particularly difficult to deal with, especially for us middle-agers. Hope you can come to a decision that you are comfortable with and never look back.

    Thanks, Pete N. Your links point to two important trials. One is to use vaccine-primed T-cells while the other genetically-modified T-cells. I had been looking for information on them unsuccessfully until you pointed them out.

    Monica and Pat: It is an excellent idea to write a finance guide for MM patients. It might also be a good idea to write a side-effect control guide. Though I have been reading so many side-effect control stories on this forum, I am almost certain I will forget them all when my wife starts treatment. A guide that incorporates well-timed use of vitamins and other OTC supplements, prescription drugs, narcotics and even acupuncture would be invaluable to new patients and patients who start on new therapies. This forum will be a convenient platform to gather every participant’s hard-earned lessons.

    Ben

  • Nancy D said:

    Monica:
    I wasn’t aware of the financial resources available. Does this include watchful waiting option too, or do you have to be doing infusion therapy to qualify, etc. I have been “cashing” my resources one after another to stay afloat financially…I have retiree insurance but I still have to make the payments to keep it. I’ve been trying to qualify for social security disability – now in an case appeal with my attorney. I know for younger people it is worse as they don’t have insurance usually if they lose their jobs, plus they have families to support.

  • Monica S. said:

    Nancy – If you have a diagnosis of MM, LLS will reimburse Ins. premiums and drug and doctor copays. Apply for the CoPay Assistance Program AND the Financial Aid Program thru LLS NOW. The Financial Aid is only $100, but its something! You can send all your receipts for drugs, copays and insurance premiums to the CoPay Assistance Program going back to LAST JULY!!! That’s SEVEN months of insurance premiums you will get back now! Keep sending receipts monthly and you won’t go broke. Then you have to reapply this coming July for both programs for the next fiscal year. If you are cashing in resources, you definitely qualify (income has to be below 800% of the poverty level I think.) Please stop using up your savings! That needs to be saved for things not covered or reimbursed by the resources available.

  • Christina said:

    Monica,
    Do they cover thecopays ,even if you have insurance. My copays are now 30 per visit. That could add up over the year. And do I apply on line or do you call?
    Thanks
    Christina

  • Monica S. said:

    Christina & Nancy – The best way to start CoPay Assist Pgm is by calling 1-877-557-2672. There is a MM selection, tell them you want to apply for THIS fiscal year, they should start an app for you and mail it to you to finish/sign. I have tried online, and it doesn’t work for me. You have to send a copy of the 1st pg of your Fed. tax form with the signed app. And you HAVE to have insurance!! They will want original receipts for oncologist visits, pharmacy and ins. prem. payments. They will not pay for labs or xrays, etc. There is a simple form to send along with receipts to indicate what you are sending and how much the totals are. They will sometimes ask for verification that your ins is “only” for you, so you may have to get a letter stating that. They will only pay YOUR portion. And, if your onc. will give you a letter stating non-cancer meds are due to your illness, they will pick up the copay for that drug too (i.e. thyroid med.) I would send all the pharmacy and make them say which they are rejecting, rather than missing out on one that you thought they might not cover(antibiotics and antidepressants ARE covered). Always make copies of everything you send them – in case it gets lost. Hope this helps!

  • Pat Killingsworth (author) said:

    There are a number of other aid opportunities as well, Christina. Best I can tell, there are more for myeloma patients than most other forms of cancer–probably because some cancers (lung and skin) are too common while others are rare and don’t get enough attention. At 20,000 new cases a year, multiple myeloma seems to be “just right.” A bit strange to think about it that way, but seems to be true. I have already started writing a comprehensive book on the subject with several co-authors who have spent a lot of time working on this. It will be specific to myeloma patients and caregivers. Unfortunately, it probably won’t be available until late spring. Until then, LLS is your best bet. Chronic Relief Fund another. But I have seventeen various funding sources tracked-down already–and the list is growing. Good luck to you- Pat

  • Forrest said:

    Pat,
    You are one of the best MM “trooper” that I have heard of in all these years of the MM world [my wife who is seven years from day one].
    I commend you for all your kind remarks and suggestions to those who write to you. That isn’t always easy to do and deal with your own battle -which is evidently on/in an unstable time. There is something about what you write and how you write and respond that seems to have a, for lack of a better word, healing effect on those who follow your postings. Good for you and thanks.
    A note – we would cast a big YES vote for the agressiveness of UAMS and Dr. Barlogie. Lots of experiences and opinions and that is just one more for the collection.
    Thanks again to you and you are in our prayers.

  • Pat Killingsworth (author) said:

    Thanks so much, Forrest! I’m up early with a bad cold (I forgot a mask when I flew last week) and feeling a bit down. Hearing from you made my day! I’m glad my words can help bring comfort to some. So, so glad that your wife is doing so well! Seven years out! Congratulations!

  • mark partington said:

    Glad your numbers are so low post transplant-especially coping w/ rev.
    After 2 sct’s-*i collected in one day)-1st brought me from 4300 to 2000/ w m-spike approx 3.0. After some short maintinence cheemo (break/family get togetherb-4 second sct) i dropped to 1500/ w/same m-spike.
    Post sct..then the rev just started. Cant take the more than ever cheemp-brain confusion/moods…everything out of kilter and dark-plus bruises i didnt create,swollen tongue-and that long list of side effects. *what r they thinking here?) Stopping-in two days i’m positive again…but i shot to 2100 after 2nd sct-sad/-m-spike is 3.8.
    The doc calls this ‘partial remission…? I stopeed an md who was available more often during my sct’s and got a 6 month life expectancy at stage 2…no kidney involvement. I’m very healthy, great nutrition and always active until my pelvis/tumor was run trough by my femur in feb 2011. Is my doctor a bit off w/ his ‘partial remission’ deal?
    I thought i was being a whinner about pain my regular family md thought was a sciatic nerve. My pelvis meanwhile had become ‘honeycombed’ in hindsight i had been working extra hard 4-5 years w/ occasional pain. Never needed pain meds for fractures to femur till last 8 mos before break–i suppose i’ve had this many years.-whoth the revlemid so awful…i just dont know i want to live like that-as someone else almost. I could use some persective here-my doc seems busy patting himse;f on the back–he’d burned up the ‘ha;f the cancer’ deal after 1st failed sct. I’m a year and 1 1/2 into this. Yes! Take breaks!-i’m gonna take one for awhile now that i’ve gone from bed to chair to walker-now cane…w/ lift 4 shoe on l side…i’ll be cane free-and it’s been testy as i dont take breaks or sit down.learned a new patience here pat.
    Your no’s seem just so far away for me…but i’m glad results do happen as amazing as yours. Revlemid….wow-suprised you can still write without crying on keys.
    Yours-
    Mark

  • mark partington said:

    sorry my post seems like the revlemid ramble….your posts which i’ve recently found are enlightening and helpful…although we obviously started in very different places–but this i feel is not uncommon.
    also i am sorry about my horrid 1 finger typing…the caps help on the pain meter tho.
    i can clarify or provide more info-really tried for short version-just hope the effects of these medicines-/rev/ 4 me….are rough on communication skills.
    it probably sounds like i’m being treated at the circus-but this is a well respected teaching hospital in central fl.
    a second opinion may involve leaving the country!-(humor)…
    i have a great life and love my work of the last 20 plus years.
    my work is easy to find on the web in an image search-and after raising two wonderful daughters i have only but one rough year here.
    my wife and wonderful caregiver has been my voice during those hard times…my best friend and soul mate so i am a very happy and very lucky person.
    ahain….i as well as so many others am glad you are well and talking about our exclusive little club.
    great job pat.
    yours,
    mark p

  • Pat Killingsworth (author) said:

    Mark-
    The ironic thing about the drugs we take is that many patients suffer few if any side-effects, while others endure an inconvenient to intolerable list. I think those of us who are fortunate enough to use them and get by should remember that. So should docs who administer them and assume all will be OK…

  • mark partington said:

    that’s a very good point pat–and i have been that kind of lucky with the most intense cheemo therapies–including those mega doses in sct….no sickness and few of the worst…(mouth,throat & digestive tract sores).

    i can only guess the dduration of onset-inconvieniently ‘tolerated’, led to a worse eroded pelvic tumor…thus stage ll w/ stubborn numbers movement-wise.
    i’ll run with ‘ha;f’,,,,i’m a half full glass type person.
    i am just pragmatic enough considering my non-linear, creative way of looking at life–that i just cant take as gospel fda stamps of approval, and given the profit motives of the multinational pharm syndicate, that some of the ‘side-effect; risk stats are figured with each of us a type of profit-unit.
    not a system of our design….not the majority of us.
    have you been made able to understand 3 basic positive functions of revlemid weighed against these risk factors? most happen too fast/too late…to take or not to take?
    others are a bit more time friendly…like possible later development of lukemia,etc,etc-(some of the sct cheemos carry this risk.
    thanks pat-
    keep headin 4 zero…
    mark p

  • Pat Killingsworth (author) said:

    Secondary cancer risk seems low and tolerable to me. Guess if you don’t break-out in an unbearable rash–or your white counts don’t crash to dangerously low levels–I say go ahead and take the stuff! Thanks for sharing, Mark!