Arnie's Rebounding World: Hope Is Not A Strategy
I recently met up with an old friend of mine for lunch.
After exchanging the usual pleasantries, he began to relate to me his current dilemma. Due to changes in the business environment, it seems that the model that his business was based upon was quickly becoming economically non-viable.
He wasn’t complaining or pounding his fists on the table about the unfairness of the world. He simply related to me how he had been out networking and exploring all of his options, including revamping his business model, merging or closing down, and going to work for someone else.
He said, “Hope is not a strategy. I can’t just sit around hoping that things will get better. I need to be working on a strategy for how I am going to move forward.”
I was struck by this comment.
Hope is not a strategy.
As I left lunch, the phrase reverberated in my head and I began to think about it in terms of my own situation, multiple myeloma patients, and cancer patients in general.
Hope is of course essential for me and for any cancer patient. It is an integral part of human nature.
I am certain that without hope, my disease would have sunk me a long time ago.
But is hope alone enough? Do we need a strategy as well?
I have to admit that I am a bit of a control person. I try not to leave things to chance if I can help it.
I am not naïve or egotistical enough, though, to think that I can actually control the outcome of my disease. I know that nature and the biology of the disease will ultimately win out.
I did, however, begin to evaluate what I would consider strategies that I have employed since my diagnosis that I feel may have impacted my chances or changed the course of my disease. I know that most of these are not groundbreaking and have been touched on by many other writers and posts. I also know that coming from my background as a physician that some of these things may come more naturally for me than for others.
1) Knowledge is power. I have tried to read and learn anything I can about multiple myeloma as a disease and its treatment. I try to understand the rationale behind what I am doing. One of the simplest things to do is to register online for Google Alerts for multiple myeloma or subscribe to the Beacon’s email list. Just by doing that, I receive daily updates on what’s going on in the myeloma world.
2) Seek as many opinions as possible. I have always been a huge believer in second and even third opinions. I am acutely aware of the gaps in knowledge, biases, and cognitive traps that physicians fall into when forming an opinion. I am also often amazed at how differently one physician may view a situation from another and how many different answers there may be to the same question. There is no question in my mind had I not gotten a second opinion that pushed for a donor (allogeneic) stem cell transplant I would not be alive today. Having said this, I understand that many times multiple opinions can be confusing, frustrating, and disconcerting. But it’s the best we have.
3) Be proactive and take control of your own health care as much as possible. Rather than going with the flow, I try to be an active participant in the decision-making process. What’s right for one person may not be right for another. No one knows your body better than you do. Physicians are well-meaning and caring, but they are also busy and have lots of other patients. While they usually watch over things, I never assume that is the case. I ask what labs are being drawn before I get stuck, and I make a point to keep track of my own lab results. Don’t be afraid to request myeloma labs more frequently than ordered if you are concerned about the status of your disease.
4) Try to think one or two steps ahead. If something isn’t working, I have always found it both helpful and comforting to already have a Plan B in mind. Of course, all these plans can be subject to change on a moment’s notice.
5) Don’t necessarily accept the conventional wisdom. One size does not fit all. Conventional wisdom had me dead by now. If something doesn’t seem to make sense, question it. Be willing to try things that may be outside the box.
So, at least for me personally, while hope is essential, I also feel that having a strategy plays an important role. If nothing else, I have peace of mind that I have done everything I can that is within my control.
I am curious what others think about hope.
Arnold Goodman is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Fascinating!
I too was struck by "hope is not a strategy", but I am not entirely sold. I think hope and positivity (sorry about the busswordiness of that) are central to any strategy for combating cancer... there is far too much anecdotal evidence on the relationship between attitude and outcome to think otherwise, don't you think?
It is a profound idea, tho. I am sitting here quietly being in partial remission, thinking about expanding my veggie garden. That is long-term thinking. 5 years ago, I wouldn't have thought about it in the terms I do now, which is that, along with other considerations, I now weigh whether or not I will be around long enough to see the benefits, and if doing so will help or hurt my estate's value. That speaks directly to the 'hope' thing , doesn't it? I have objectified it: I now have to weigh my hopes and dreams against the very real statistics available to me. I have to evaluate the strength of 'hope' in the math involved.
You are quite right: Myeloma is a complex thing, and it really can make that math difficult!
Hope is a key part of healing and not giving up. Our 32 year old daughter is coming up on her one year anniversary of transplant. At the time we all hoped this would work. She is in complete remission right now. We hope this continues for a long time. She is having a hard time thinking ahead to the future. I worry about the future. After awhile I hope she can hope more for the future. We all hope for a cure.
Through my own experience of being diabetic since I was 14(45 years now) I have learned to stay on top of all updates on diabetic issues. I have questioned doctors & gotten second opinions. That is harder for a young healthy person suddenly hit with the diagnoses of Myeloma. It can get frustrating at times because there are differences of opinions on treatment & different options. So sometimes it is just easier to do what the doctor says. Im hoping my questioning will lead her to question more.
Hope & being realistic is hard to balance. We always have to hope. I've been hoping for a cure for diabetes for 45 years. I now hope for a cure for Myeloma. But in the meantime we have to be realistic & take care of ourselves as best we can.
Hey Arnie, your article was very informative and right on the button. Hope is essential for us MMers and, as your article stated in other words, we have to be our own advocate. The more we know, the better of a decision we can make. Keep em coming, Arnie
Great article!
Hope can be a very positive force. It has certainly helped me weather the ups and downs of myeloma. That being said, all the hope in the world won't cure cancer in and of itself. I look at hope as the sweetener or the spice that makes reality palatable.
hOPE is a good strategy to keep one's spirits up! Because there is always uncertainty in myeloma, even to know what the results of one's next blood tests might be, one has to find ways to stay positive.....and we do always hope for the best, in terms of treatments and improving health. Best wishes to you, Arnie, and hope you are staying well!
Hope is the core of a positive mental framework. At the same time, I think of my father who always said The Lord helps those who help themselves. Hope without action is only a dream. Arnie, you are right we must be active in our treatment, learn all we can and hope for the best outcome. I am in CR and at some level believe I'll be a long term survivor, whie I do all I can to make in true.
I enjoy your blog and perspective!
Cindy
My hope is faith based, therefore it is as crucial to me as breathing. While knowledge is powerful, it is cold comfort without hope.
My husband is so hopeful and has so much faith in God. He doesn't really want to even know the details of his labs. He just asks the dr, am I still in remission? I wanted to ask the dr at what point will he be considered relapsing, but I respect my husband and if he doesn't want the details, that's fine. That said, I personally would like to know what his FLC KAPPA, LAMBDA and RATIO numbers mean. I know the numbers and know how they relate to the MM, but don't know at what point we start some sort of treatment again. He is 30 months post autologus transplant! Hooray! No maintenance or any kind of chemo since. Full remission obtained. I am getting nervous about the numbers and no one to talk to about them. I was told 3 years ago his diagnosis was IgG Kappa. If anyone knows, please share with me. Thanks in advance.
Hope is a look into our desired future. Hope is a positive goal to be achieved. However, to realize that hope, that goal, we need plans, and actions that can deliver the desired results. This is where it gets tricky due to our collective illness. The path to the goal is not a straight one. There are many forks in the road to our hoped for future, where decisions have to be made. Stem cell transplants, new chemical agents, nutrition, alternative medicine, all can changed the path toward our hoped for outcome.
Our medical practioners have protocols that they feel are best, but second opinions and informed discussions can draw out even better treatments than the standard protocols. However dring all of this is our hope for the future that we want to achieve.
So is hope a strategy? No. It is the overriding goal that we all want to achieve. To achieve it we have to have the best plan that we can possibly muster to reach that goal. That plan will change as we learn more about our collective disease and about the varied treatments that suit us the best. Is hope a strategy? No. However without it, there will be no strategy to reach our goal against myeloma.
Hi Dr. Goodman,
I could not agree more with this point:
"Don’t necessarily accept the conventional wisdom. One size does not fit all. Conventional wisdom had me dead by now. If something doesn’t seem to make sense, question it. Be willing to try things that may be outside the box."
If I had gone with the conventional 3 drug combo to auto to never ending cycles of Revlimid I would not have nearly as great of a quality of life as I have today. My doctors goal for me was to be cured and have a great QOL. She has delivered on the QOL part and with 2 years plus of sustained molecular CR since my upfront allo as well. The "conventional wisdom" does not seem to think that is possible for a high risk patient like me. I am so glad I did not get treated like the "big name" myeloma doctors treat their patients and have a doctor that strives for the best possible outcome not just one that is better than it would have been 10 years ago.
Mark
great to hear the different perspectives on this issue. And don't get me wrong I don't mean to minimize the importance of hope. As I said, it is essential and the basis for everything. Whether it is faith based or otherwise But at least for me and my personality I am uncomfortable with relying on hope alone. As Cindy said hope without action is only a dream. Different things work for different people. For myself; hope and strategy
Thanks for the insightful article. I read it after going for a walk this morning. On the way up the hill towards home I came to the same conclusion you did; almost the exact words that you used - in business you can't hope yourself out of a bad situation; you must plan, plan again , execute and be ready to change your plans if they don't work. So it is with us in the MM family. I still hold on to hope, but I also need to plan the rest of my life. The plan gives me guidance, a compass to follow in the darkness but hope is what grips me to this wonderful life.
Another great article, thank you.
Hope is not a strategy, you're right, its not. But having a strategy without hope seems to me to be doomed to fail. Hope and strategy, we need both.
I think hope is my internal eternal flame. It keeps me going, keeps me searching for the strategies/solutions that will work. Coz they ARE out there we(mankind) just have to find them. And this is for all aspects of my life not just MM.
All the best,
Libby
Insightful post Dr. Goodman, I have been following your story here for a while, and wish you the very best. Your tenacity is so inspiring.
In the spirit of your post, planning for every contingency, I am gathering information on allos for when my 'conventional 3 drug combo to auto to never ending cycles of Revlimid' as Mark put it, eventually fails (actually my 'never ending cycles' of maintenance is RVD at close to induction dosages since I am also high risk.) One hope is that one or more of the new MAB drugs will be available, not prohibitively costly, and as effective as early studies seem to suggest.
Another route is the allo transplant. Upfront allo was suggested to me at my transplant hospital, but having read a lot of the literature available at the time, I opted for the traditional route. From your blog I'm familiar with your allo experiences and very appreciative for the information.
Mark seems extremely positive on allo, and with good reason. I wonder if he could share the name of his transplant institution, whether they do salvage allos as well as upfront, and how GVHD vs GVM is handled. Seems to be a quite delicate balancing act.
Hi Curious,
The GVHD and GVM is the critical issue with respect to allo transplant. Fortunately when a patient is in first complete response prior to transplant the doctor has the ability to manage that balance much easier than when a patient is in a relapsed setting can. It is very difficult for a doctor to try and get the donor immune system up to speed while they are trying to treat myeloma as well. We are very fortunate that Dr. Goodman writes such an informative column. I have learned a lot from it.
I did what is called a partially t cell depleted allo with myeloablative conditioning. I used a full dose of melphalan and 210 mg/m2 of fludarabine. I used a ployclonal antibody called ATG for t cell depletion. ATG kills myeloma cells as well. Patients that use ATG have a much lower chance of having extensive chronic GVHD. I only had a mild skin rash and sore gums for about a month after I got off my immunosuppressive drug and I have had none since. I also had a Grade 1 skin rash for about 1 month with respect to acute GVHD. That is exactly what we wanted.
Here is a link to a clinical trial that is currently on-going at one of the Beacon sponsors Memorial Sloan Kettering that explains this.
"Before the transplant, the physician will treat the bone marrow to get rid of the cancer. The physician uses three chemotherapy drugs plus ATG. The chemotherapy drugs (Busulfan, Melphalan and Fludarabine) kills the cancer. ATG gets rid of any of the patients T cells that survive the chemotherapy. This ensures that the donor stem cells are not rejected. The patient will also receive additional white blood cells called lymphocytes from the donor. This is called a donor lymphocyte infusion or DLI. These additional infusions will help cause a graft-versus-myeloma effect and can help the donor stem cells grow."
http://clinicaltrials.gov/show/NCT01131169
Take notice how that is different from the tandem auto-allo approach that is commonly employed in myeloma. The tandem auto-allo is an attempt to break up the high dose chemotherapy and the immunotherapy from the donor cells. This type of trial is using a lesser amount of immunotherapy right after the high dose therapy (due to the t cell depletion) and than giving more immunotherapy (DLI's) around 5 months after the transplant. The patients in the trial I attached have a very low chance of having GVHD after transplant due to the ATG and Clinimacs t cell depletion. I was not in a clinical trial when I did my allo but I would do this clinical trial if I was a newly diagnosed patient in 2013.
I hope that helped and good luck with everything moving forward.
Mark
Mark,
Thank you for the extensive explanation and link. Yes, it is very helpful. Continued great QOL!
Curious
Great article and sound thinking! I strongly believe that hope, faith, and positive attitude are essential in all forms of. Human endeavor....... Including treatment aand survival for MM......... I would hasten to add : ESSENTIAL BUT NOT SUFFICIENT...... As a good active plan and strategy are also essential. We cannot control life...... But we can influence it! A well thought out strategy along with a good Plan B can help hope, faith, and positive attitude be even mOre effective. Remember, "Just because something may or may not be true is,no reason to not believe it. Things that may or may not be true are often the most important things a man can believe."
It looks like that to even be considered for that trial, you must have high risk cytogenetics or have relapsed - both of which run counter to the conditions Mark describes as most favorable for a cure and controllable GVHD - namely being in a first CR.
In other words, the best route to a cure is reserved for those who are least likely to be cured.
How does one get on a curative track in one is in a first CR? Will insurance pay for an allo for some in a first CR?
Mark thanks for the good info. Each transplant center seems to have slightly different protocols and ways of doing things. Mick great points, I think 'essential but not sufficient' sums up what I am trying to say. I totally agree we cannot control life but I like to think, or at least it makes me feel better to think, we can at least influence it.
WounderinCa, if I understand correctly you would be pushing for an allo while in CR? Which seems like a risk very few people would want to take or recommend. Don't forget that allo still carries significant risk and is not to be taken lightly. The allo patients that are posting here are the ones alive and doing pretty well. We don't hear from the ones who didn't make it. I do know that Moffitt has been doing a trial with allo for first relapse but not for patients in CR.
Hi WonderinginCA,
"It looks like that to even be considered for that trial, you must have high risk cytogenetics or have relapsed – both of which run counter to the conditions Mark describes as most favorable for a cure and controllable GVHD – namely being in a first CR."
It is very common for patients that are high risk to go into CR quicker than standard risk patients. The problem is that they lose the CR quickly. I got 3 opinions at diagnosis. All the Doctors thought I was a high risk patient and all were very confident I would get to CR fairly quick. They also all agreed that I would get between 12-20 months remission with auto and maintenance and I would be extremely difficult to treat after I quickly relapsed. Here is a link to a study that Mayo did that shows patients with the best response to the first cycle of therapy have some of the worst outcomes.
"Both shallow and very deep response to therapy in cycle 1 is a strong indicator of eventual disease outcome and should be considered as marker of high-risk disease, likely through different mechanisms. For the shallow responders, prospective trials should assess if a change in therapeutic management will alter the outcome of these pts. The rapid deep responders also appear represent a different high-risk biology, emphasizing the fact that pts with high-risk disease often have excellent initial responses, but poor long term outcomes."
http://meetinglibrary.asco.org/content/118060-132
Mark
Hi Dr. Goodman,
With respect to younger patients some doctors do recommend allo in first complete response. I got 3 opinions and 2 of the 3 recommended allo in first complete response.
Moffitt just completed a Phase 1 study of allo to consolidate first complete response or VGPR and this abstract says they are going on to a Phase 2 study.
http://www.ncbi.nlm.nih.gov/pubmed/23542223
Here is an example of well known myeloma/transplant doctor Sergio Giralt discussing the issue of allo in CR1 for younger myeloma patients.
"Oncologists frequently see multiple myeloma patients in their practice who have achieved a stringent complete response (CR) after receiving several cycles of combination therapy, such as bortezomib plus thalidomide plus dexamethasone, followed by an autologous SCT. “These patients ask, ‘Can I be cured? What is my life expectancy? Will my disease come back?’” Dr. Giralt said in his presentation at the meeting. “There is a chance these patients will be cured, but more likely the disease will come back and will be more difficult to control due to clonal evolution, and will be more difficult to control with chemotherapy.”
The question for these patients is “would replacement of their bone marrow with the bone marrow and immune system of someone else be able to achieve long-term disease control? That is, can I do SCT and exploit the graft-versus-myeloma [GvM] effect that will prevent the disease from coming back. Is the risk of the procedure worth the benefit?”"
'* In standard practice allogeneic SCT can be offered to patients with high-risk disease, or younger patients with standard-risk disease who are highly motivated and well-informed.
* Allogeneic SCT as consolidation of a first remission should preferentially be performed under the auspices of a clinical trial."
http://journals.lww.com/oncology-times/Fulltext/2011/12100/Sergio_Giralt__Allogeneic_Transplant_Remains.4.aspx
Here is a recent patient blog post from a newly diagnosed younger patient that had just met with another top myeloma doctor (Dr. David Siegel) to discuss first transplant options.
"BY THE WAY, Dr. S recommended allogeneic. He said if it were him – this is what he would do."
"As Dr. S said – Do you want to live a great life and make it to 50 years old or be somewhat compromised and live to be 80?" http://bradstrong.wordpress.com/2013/06/
They are not the majority, but some well respected myeloma doctors try and cure their younger patients and not just control the disease. I know I have the minority opinion, but IMO an early allo is less risky than the inevitable relapse of myeloma and resistance to the myeloma drugs that occurs without an early allo.
Mark
I am a patient of Dr. S as well, but I am starting to believe I dont have the balls for an allo
In response to your request for others opinions about hope being a strategy let me say I think you and your friend are right. Hope is not a strategy but often it is what we need to keep going. If not for hope we would give up too easily.
When making any important decision I have always tried to "Do the right thing and hope for the best". Doing the right thing is the most important. However, we can only do what we know to do at the time. When we learn more we can then make any changes. That's called seeking new knowledge and learning from it. We should be doing that throughout life anyway.
Last year I was diagnosed with Myelofibrosis and recently started taking the drug Jakafi which helps control the symptoms. I am 81 years old and not eligible for a transplant so I don't have many choices to make. I consider myself fortunate that I did not develop this condition until advanced age. I too google every day for any new information knowing that Myelofibrosis will probably not be cured in my lifetime. Meanwhile I try to enjoy each day as it comes while hoping for the best.
After reading all of your columns I realized that you may be the son of a cardiologist in Fort Lauderdale who treated me and my family from 1966-1994. Best Wishes to all of you.
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