Pat’s Place: The Purgatory of Waiting
A while back I reported how my compromised immune system, reacting to years of chemotherapy, had allowed melanoma (skin cancer) to develop on my left ear. The melanoma was surgically removed on Monday.
But this week’s column isn’t about that. The surgery went well — although my surgeon did need to remove a larger part of my ear than he originally anticipated.
No, this week’s column is about waiting.
Let me set the scene for you. I’m lying in pre-op, meeting with an anesthesiologist about my upcoming procedure.
But I’m not focusing on what he’s saying. Instead, my thoughts are drifting back to a seemingly insignificant blood draw I had earlier that day.
The results from that “stick” are far more important to me than how my ear would look following surgery, because the results could have a huge impact on my life and my future.
As you may remember, this summer’s autologous stem cell transplant didn't go as planned. With my multiple myeloma under control and on the ropes, I began the transplant process hopeful that it would chase my myeloma away, pushing it into remission.
Instead, I emerged from the three-month long ordeal worse off than I was when I started.
My M-protein number, or M-spike, was a practically non-existent 0.2 before the transplant. After the transplant, it was rising rapidly, from a 0.5 to 0.6 in a matter of weeks.
My medical oncologist Dr. Malhotra, my myeloma specialist at Moffitt Cancer Center Dr. Alsina, and I decided early last month to try the same chemotherapy combination that had slowly and steadily lowered my M-spike prior to my stem cell transplant.
I would start the combination, called RVD (Revlimid (lenalidomide) / Velcade (bortezomib) / dexamethasone (Decadron)), immediately.
I have been on RVD for four weeks now. That’s not very long. But everyone involved agrees we should see some progress if the therapy is going to work.
The results of Monday’s fateful blood draw — the one I couldn’t stop thinking about — will go a long way in telling my future.
What will the number be? Will it be down, stay the same, or — God forbid — have gone up again?
At this point, all I can do is wait.
Constant waiting and wondering is a familiar experience all multiple myeloma patients and caregivers share.
I call it the purgatory of waiting.
It makes it difficult to concentrate on everyday tasks. And it makes it difficult to enjoy one’s life and to take things one day at a time.
It makes my ear surgery seem insignificant when compared to a simple, fateful blood draw.
Instead, I’m spending my time thinking about questions like these: Do we stay the course? Or do we add one or more new, assisting drugs like Doxil (doxorubicin liposomal) or cyclophosphamide (Cytoxan) to the mix?
Or do we scrap the whole thing and try a new, unproven experimental therapy by joining a clinical trial or applying for compassionate use so I can gain access to carfilzomib or pomalidomide?
Important, life-altering decisions may be ahead of me — but all I can do is wait.
Sound familiar?
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon.
Pat will be off next week, celebrating Thanksgiving (and, hopefully, the results of his blood test). His next column will be published Thursday, December 1.
If you are interested in writing a regular column to be published at The Myeloma Beacon, please contact the Beacon team at .
Hi Pat,
Yes, we've all done "the wait". Remember how we use to fear report cards when we were younger? If I only knew then...
Is it possible that your transplant worked but not doing anything afterwards allowed the mm to come back?
I went through a round of VDPACE that dropped my Mspike from 3 to 0.6. But due to health issues, I had to sit out the "chemical game" for 4 months. After which, I was back to 2.5!!
I wonder about the wisdom of waiting 100 days to evaluate these SCT's, when, in some situations, we are giving the mm time to come back.
I hope my reply does not come off as insensitive or an attempt to instill doubt into your treatment!
Thanks again for having the courage to write your articles. I only have the courage to reply to them, as I don't have a feel for what might be interpreted as insensitive(and I'm too lazy).
Yes Stan, it is possible. But "in the good old days," one didn't use maintenance after a SCT. In that case, waiting shouldn't matter. In my case (and yours) it probably did. Hope you are doing OK...
Hi Pat, I hope that your 'M' spike disappears with your maintenance chemo. I just wanted to share that before my SCT in Jan. 2010, I had undergone several cycles of Velcade pluS Dex which brought the levels from 56 in July down to just over 2. At my diagnosis in July 2009, the 'M' was really high, my bone marrow biopsy showed I had 50% plasma cells, I had fractured several vertebrae and X-rays showed that I had numerous lesions all over my bones. I was one sick puppy!! Anyways, where I live, Velcade had just recently been approved as a cancer drug. Velcade is really a wonder drug...the two teams of scientists who developed it, one from Stanford, CA and the other from Israel, won a Nobel Prize in Chemistry for their work. It was the velcade that brought me down to reasonable levels of 'M' protein. So, I asked my oncologist, who is also a blood specialist, and who my husband and I consider to be really brilliant, whether or not I really needed this 'stem cell transplant'. He did recommend it, since it is part of the MM treatment protocol, and can help to keep your disease 'inactive' for a longer time.
I had the SCT, and guess what, after it my 'M' levels were still about 2. Then I took a whole year of maintenance chemo, this time on Revlimid, also newly approved for use here, and about six months later, my Monoclonal, or SPE, as it now seems to be called, fell to levels not measurable. Of course we were pretty happy about that result.
But not being oncologists ourselves, we put our trust in those who have made a lifetime's study of blood and it's disorders.
I didn't know what to do really to help myself through this, but do walk almost daily for 3 km or more, and try to stay fit. Also eating a healthy diet and getting lots of rest. I am very fortunate in that my back injuries were not severe enough to cause me not to be able to walk...I was in such pain that I used a walker for a few months after the fractures. People here were just great and encouraged me every (painful) step of the way. Am much better now thankfully, but sure had to give up jogging and also playing in a pipe band (bagpiper!). Take good care of yourself, and Pattie too, and hope for the best with your blood tests. I know that for me it took a few months for the results to show up better.
Thanks for sharing, Nancy! Your comment was as long as my column! I'm just glad you are doing well. Congrats!!! Hopefully I will end up in a similar place...
Wow your article hit home with me. It is a constant roller coaster of emotions I've dealt with for 4 years, 3 mos. Not only am I playing the waiting game of numbers but still trying to find some cocktail to stop my progression from my second relapse. I've become resistant to Velcade. We tried Revlimid and it did nothing but give me unbelievably bad side affects. Now trying Zolinza with Velcade which dropped my counts two tests ago but they just went higher with my last test.
It gets old but it is all we have and it is what we do now. I am hopeful for the new cancer vaccine that has been in the news lately. Sounds very promising for myeloma. Thanks, Pat for writing your articles. They remind me that I am not alone and that this crazy myelomaville world is very much the same for all of us myeloma patients.
Hang in there Pat and best wishes for better days to come!
Carol Smith
Pat, know that many people, including me, hold you in our thoughts and prayers. And I am sending positive thoughts your way. Take care, wishing you wonderful results!!
Thanks, Joanne!
Sorry for such a long comment, I do tend to go on and on sometimes. I just thought that your medical results were similar in some ways to mine. Of course, everyone is quite unique...wishing you all the best!
Hi Pat!
I had an autologous stem transplant some years ago. Since then I have received medical care only when my IgG has risen too high. I noticed that if I use Velcade for a month or two before Revlimid the impact is huge. Even though in my case Velcade alone acts very slowly, it seems to prepare the ground for Revlimid. In fact, last time when my IgG doubled the initial Velcade treatment reduced it only by few points but the first month with Revlimid after that brought it back to normal. Velcade alone or Revlimid alone act much slower, it seems. I don't know if anyone has investigated the sequential use of these substances - most of the studies concern concurrent use. The side effects are the worst: I got 2 thrombos with Revlimid until I learnt to use Marevan to protect myself. With Velcade I got shingles of which I still suffer. I should have used Aclovir for protection. I wish you all the luck, Pat! Keep writing, I enjoy reading your thoughts.
BR Steve
One rough ride, Pat. My heart aches reading your posts... I pray strength for you.
Hi Pat!
I too would be focused on that 'needle stick' it is wise to do so.
Because carfilzomib binds irreversible to the protesome, I highly recommend you opt for therapy with that includes that drug. I do not believe you mentioned your cytogenetics. But I already know based on cytogenetics, BSCT is now a good option. Perhaps, you want to explore that data and make a decision that includes that information.
After all if we think logical autologus BSCT gives back your same diseased SC's..that works well if your disesase is not aggressive. But once you have therapy it basically selects out resistant MM cells which are the ones remaining following 'induction' and subsequent therapy...so you need an agent that targets cells differently to hit those 'refractory' cells.
Decades ago, BSCT work well for a lot of MM patients..and not well for others. That was approximately a 70% to 30% ratio, respectively...and medically we did not know why. So they pursued hi dose chem which is the actual therapy for BSCT not the transplant of cells. No one could sort out the difference, so we all had faith we would be in that 30%..today, thanks to cytogentics, we can sort out who are in the 30%.
Wishing you all the best Pat..and I know that God is going to open doors for you to keep your MM at bay.
All you likely need is a new target for your MM cells...and that therapy is right around the corner.
Blessings to you and Happy TG!!
Nancy S!!
Thank you very much for your post.
You have highlighted what I believe is an area that needs far more discussion and that is the concept of autologous transplanting BACK diseased cells following, HI dose 'therapeutic"chemo. I believe most folks do not know that it is the hi dose chemo that IS the therapy, not putting back your own 'transplanted" same diseased cells.
Your post is particularly enlightening as you state that clinically you had a better outcome, as measured by M spike by using the innovative new therapeutic protesome agents.
Which begs the question of whether hi-dose chemo should even be a therapeutic option any longer. After all MM is considered incurable for over 50 years, so obviously hi-dose chemo preceeding putting back in your own diseased cells is not the therapeutic option that works!!
It is time therapy guidelines which include autologous BSCT as standard of care change for MM!!
Nancy,
Ooops, I meant to say that therapy guidelines that include HI DOSE chemo PRECEEDING stem transplants needs to be re-evaluated/assessed as a standard of care regimen for MM in light of the new innovative therapies, not just autologus BSCT.
IOW's if patients get a CR and it is determine by immunotyping that there is also "depth of response" then perhaps the SCT consists of activating the harvested B lymphocytes by infusing those cells with a killer agent or 'terminator' seeking cell that converts the rest of your Stem Cells into heat seeking missiles for those MM cells.
That approach makes as much if not far more sense than hi-dose chemo with an autologus BSCT with the added benefit of not being so extremely toxic. I mean mustard gas? My God..50 years and we still subject patients to that?
Praying for all oncology scientists to come up with a far more humane effective therapy that abolishes the hi-dose chemo.
Nancy-
Please, no need to apologize for the length of your comment! There are similarities between our cases. Thanks for reading!
Steve-
I am also IgG, but my IgG numbers show-up as normal. Isn't that strange? Your experience with the Revlimid/Velcade combo working best together is not unique... One reason why RVD is "gold standard" of myeloma care.
Suzie-
Thanks much for your contributions each week! I am considered "low risk," with no genetic abnormalities. But I have spent over four years using Revlimid, after all. I was due for a relapse... Just surprised it has been this stubborn.
OTOH....while the hi-dose chem is grueling..here's data to support it:
"A recent review of retrospective and prospective studies on almost 5000 patients treated with HDT indicated a highly significant association between maximal response and long-term outcome.33 This correlation was also found in large series including relapsed patients.34,"
http://bloodjournal.hematologylibrary.org/content/114/15/3139.full.pdf
Good Morning Pat!
Glad to contribute..it's the dex!!!!!!
I stopped exploring/inquiring about cytogentic outcomes because they are not seen in the majority of newly diagnosed MM pts and likely not to be helpful to most folks at Beacon plus they are generally not uplifting. Additionally, the majority of trials have not used the new 'high risk' cytogenetic stratifications making it difficult to determine outcomes based on that subset or do comparative analyses.
Nancy,
The results of the Vista trial, support your experience:
" In the Vista randomized trial, the combination of MP with bortezomib was superior to MP for all efficacy parameters, including the CR rate.47 In the bortezomib arm, the CR rate was 30% (EBMT criteria), which is quite comparable with CR rates achieved with HDT."
Hi Pat and Suzie Rose...I am not sure of whether or not the SCT 'worked' or not. At the time, my doctor noted that perhaps residual amounts of the IgG (my abnormality) were still circulating in my blood stream. After all, those light weight proteins are not filtered very easily out by our kidneys, so could be in the blood for a long time. I know about the reason behind the SCT, but using cylcophosphamide before Stem cell mobilization is meant to destroy most of the plasma cells. There will always be some contamination in an 'auto' transplant, hence the 'maintenance chemo' afterwards. I did get to a good result, after some 21 months of intensive treatment, and now it has given me time to think and learn and hopefully if more treatments are needed, to be an intelligent patient. This website has helped me a lot recently, and I do read all of the articles with interest. Thanks so much to the writers who take the time to prepare such relevant discourse! For example, now I know I have had the 'gold standard' of treatment, which confirms my thoughts all along!!
I kept all my lab results...have them in a big binder, and that's how I can know now what path my recovery took...I think it's a good idea to ask for a copy at every appointment. They were not automatically given to me, since probably not everyone is interested in that, but they are helpful for reviewing later. In my case, my daughters and husband, who are doctors and a nurse, reviewed them with me. One's family doctor could do the same also. My family doc now has a file on me about a foot thick...she got all the consult letters from the oncologist and so is also following my progress. So when I see her for any reason we also have a chat about myeloma.
Well, I can't seem to write a short comment.....thanks so much for listening. I really appreciate that.
Pat, Keep the faith! Revlimid is a good drug and so far, I haven't heard of it NOT working on anyone. My husband is going back on treatment on the 29th after almost 3.5 years of chemo-free life. He will be in a clinical trial of Rev/Dex/elotuzumab. Elotuzumab is an antibody that enhances myeloma drugs-at least velcade & revlimid. I am not sure if he will get the elotuzumab, depending on the arm of the trial he is assigned to, but I know the Rev/Dex combination is good so I am not too concerned at this point. He had tandem SCT in 2008 with the first one not doing much, but the second one seemed to kick it pretty well. His M-spike was always measurable after that, but it was not climbing until this year. I feel lucky to have had that much chemo-free time with him. I hope your treatment goes well and has great results! Don't worry - just stay busy and trust that God has you right where he wants you.
Thanks, Monica! Good advice...
Pat,
How well we understand the purgatory of waiting.....just know that we are also hoping your test results will show a good response to the maintenance therapy your are on! My husband continues to do well on Rev/Dex (although Wednesday he took his Dex and didn't sleep a wink last night). Small price to pay if it keeps everything in check. Happy Thanksgiving to you and Patti!
Suzierose,
I had to point out that the 3rd paragraph of your first post may very well be the most informative and concise words that I have seen written about MM therapy. I wish more MM Doctors would explain that to their patients and treat accordingly. IMO, an Auto should not be used last in the sequence of therapy (if the patient is planning on doing an Auto as part of upfront therrapy) or just followed up with lower does of Revlimid for the reasons you state.
I think this was the most important peice of news the Beacon reported last year. Note that these patients had not been exposed to Thal/Velcade prior to to Auto. We would use Revlimid instead of Thal here in the US. IMO, if a patient is planning on doing an Auto as part of upfront therapy, RVD should not be used as Induction. Use your best Therapy (RVD) after the Melphalan to try and kill off the resistant, residual cells.
http://www.myelomabeacon.com/news/2010/04/06/velcade-thalidomide-dexamethasone-therapy-after-stem-cell-transplant-improves-response-in-multiple-myeloma-patients/
Mark
Good point, Charisse! That is a small price to pay...
Pat, My husband and I follow with interest your journey with MM and appreciate all your comments on same. Are there any studies that you know of that explore the effectiveness of SCTs on someone with the p17del chromosome issue? We recently had an initial consult with our doctor about proceeding with one and brought up the chromosomal abnormality. He didn't really address it too much ... just that it was a concern. Also, my husband (originally diagnosed in May 2011) is dealing with a perforated bowel ... his reattachment surgery means that he will have to be off all chemo for six weeks ! What a mess. His M-spike has gone from 7 to 1.6 ... just on Rev/Dex therapy - had to discontinue Velcade b/c of PN problems.
Again, we look forward to reading all your informative posts and wish you well. You have been to hell and back, it sounds.
Jan
We all respond individually to treatment. So my opinion is that 17 del, or any other possible high risk indicator is beside the point. Docs are still going to try everything they can that's available. I think that your instincts are good... Get him fixed-up and healthy enough to re-start chemo ASAP. Have you tried sub-q Velcade once a week to help limit PN? Best of luck to you and your husband. So sorry all of us have to go through all of this...
Hey Pat, I just wanted to keep you updated on my M-Protein count. I am now at 0.2 after not having any M-protein count after my SCT in March. I understand the waiting. I hate it. Every 5 weeks I have to get blood work and see my Doctor and go over the results. It seems to be on my mind the whole time. I personally would not use the word purgatory. It seems more like an "eternity" of waiting when you combine all the waiting we do. You are right in saying-Important, life-altering decisions may be ahead of all of us, but all we can do is wait and wait. It is unfortunately a part of our lives now. All we can do is try to occupy our minds with other thought's like family,hobby's,planning vacation's then taking them. Good stuff. I am going to Puerto Rico for a week on Sunday and I cannot wait. At least for a week or so I will have a respite on thinking about anything but family and the Island that I was born in. Forget about occupy wall street. "Occupy your brain".
Sorry we share this watching and waiting burden, Nelson. Are you on maintenance of any kind? Enjoy your trip! Pat
Revlimid. I start my 14 day cycle again on Monday. Doctor tells me nothing to worry about right now. All the other numbers are looking good.
Pat,
Thanks so much for this post. It was very timely for me. I am six months post ASCT, and my lab levels are slowly sinking. They never reached the normal range, and now my platelets are 61. My transplant physician said it was unusual for blood values to be as low as mine at 6 months. My M protein and Kappa/Lambda ratio are somewhat acceptable thus far so it doesn't seem to be the MM. Ten days ago I drove to Dallas and had more lab work plus a bone marrow biopsy which usually comes 1 year post transplant. The doctor suspects I am having an autoimmune response where antibodies are "chewing up" my platelets or ???
I was told the results would be emailed to me in a week or so, and the doctor would discuss them with me at my appointment on December 1st. (I live 340 miles away, and he flies out to my town once a month.) I have yet to get the email. Normally I would be champing at the bit, but now I am actually hoping I don't hear anything until after Thanksgiving. This is a real big change for me. If I were to analyze my mental state, I guess I'd have to call it denial or avoiding. If the news is not going to be good, it will wait. I will have a Thanksgiving of gratitude for time with my husband and our son who is coming from out of state, and I'll face the results when they come 12/1. I refuse to give up this bubble of feeling good and happy just yet.
Thank you ever so much for being open and candid about your experience with waiting. It really helps to hear from a fellow traveler.
Linda
My thoughts and prayers are with you al. My husband has STAGE III IGA MM with 17p deletion. He has had 2 ASCT , relapsing 6 months after each. Maintenance was on Dex after each. When the MM came back it behaved very differently. It no longer leaves any traces in urine or blood tests (everything looks normal) but it attacks other body areas as well as the bone. The first signs of activity are tumas. He has had radiation on a chest lump which has now disappeared. He is currently on Rev/Dex but now he has lumps on his legs. His Dr thinks it is MM again but the only way to track his MM now is by PET scan and his appointment is 30th Nov, now that's purgatory waiting. Until then he continues on Rev/Dex but Dr is looking at trials now. Having read all of your comments I might ask the Dr why they have not tried the 'Gold Treatment' (Rev/Velcade/Dex) for him. Thanks so much to you all for sharing your MM journeys, I truly believe it will be the patients brainstorming that will find really assist the doctors to find our which treatment is best, so please keep sharing!
I think the best advice and (non-medical too!) is that a positive attitude and being close to nature can really help. When my husband is struggling, I whisk him off to a soul-healer or reiki or a massage or day-spa or a picnic in the forest and it really helps to boost his moral. Sending Love - Light & Healing to you all, God Bless.
Linda-
I wonder if the silver lining of this response could be your immune system is attacking your myeloma, too? Thanks for sharing and best of luck to you!
Joni-
We are all in this together, aren't we! All we can do is "hang in" and keep living best we can...
Joni you situation is similar to my husband's situation - short-term remissions - but luckily still 'just a back ache'. The 'gold treatment' didn't work for him. First he had been put on a 24/7 'revlimide/ endoxan/prednison' treatment, which caused an 'overdose' and his platelets to plummet to dangerously low levels. The 'gold treatment' (with pred instead of dexa) followed. We were hopeful, since he successfully participated in the phase 3 Velcade clinical trial 6 years ago. This time the Velcade failed to do its job.
Pat, our waiting days 'are over', this coming Thursday my husband will start with the phase 1 (level 6) study into the safety of daratumumab (HuMax-CD38, a new experimental antibody). He had no choice since nothing else improved his situation, but we are hopeful because, so far, the level 5 results have shown an improvement in 3 out of the 3 patients who participated in the study! Yes, there will be waiting again, but this time to see whether this dose will be safe for him - and future patients - and will do the job. Then the study will move on to phase 2 - daratumumab combined with Revlimide - in the spring. So, the waiting may have stoppped but will start all over again this week. Yes, all we can do is hang in.....
Regards
Lia
Hats off to you and to your husband for participating in clinical trials, for your health reasons. So many people benefit from new drugs when they do come on the market...best wishes on the new trial.
Ditto from me, Lisa! Keep on keeping on...
Hi Pat,
I have a group of ladies about 20 strong who are praying for you and me on a daily basis. I wrote a while back that I just began this MM walk and it is a scary and fearful thing. I will have my first blood draw on Dec. 12th. My MM is in an idle state and I am praying it will stay that way. Thank you for your dedication to keeping us informed and up to date on this vicious disease. I read every one of your columns and keep track of how you are feeling. God's peace be yours.
Prayers for total remission.
Cynthia
Thank them for the prayers on my behalf, Cynthia! Glad you are doing OK. One day at a time, right?
Pat, since it is apparent that you are a strong person....Keep the strong attitude and know that those "out hear" in the MM world are interested and keeping you in our prayers.
Pat that would be out here and .... we hear you!
Thanks, Forest. You made my day!
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