“Quality of Life (QoL) is a phrase used to refer to an individual’s total wellbeing. This includes all emotional, social, and physical aspects of the individual’s life. However, when the phrase is used in reference to medicine and healthcare as Health Related Quality of Life, it refers to how the individual’s wellbeing may be impacted over time by a disease, a disability, or a disorder.” – Wikipedia
I don’t know about you, but I’m getting a bit charged up these days with Medicos expressing their opinions about the Quality of Life of a patient after treatment of MM. It comes up a lot if they are in the NO SCT camp, naturally. But it isn’t about SCT or NO SCT, Single or Tandem, Allo vs Auto that I want to focus on here. I want to talk about:
Says who?
Who decides?
Study after study we read or hear about talking about these different treatment paths. Patients who might benefit from a SCT are opting to not even consider it due to QOL issues that they are concerned about. Rightly so. And conversely, you might have a doctor tell you a treatment course is the best and then you feel ruined afterwards and the doctor’s attitude is, “you’re alive”. Had you known, you might have wanted to explore more options.
If Lance Armstrong had done the treatment first presented to him by MD Anderson and not gotten a fan letter from a physician advising him to consult with someone else, he would have never ridden a bike again. His lungs would have been destroyed. Now while that might not be a big deal to you, riding a bike is a big deal for him. He wasn’t even considering that, to his credit, but when presented to him that he could receive treatment to save his life AND his lungs, he opted for this new innovative approach.
Then you have some nut job that didn’t treat Farrah Fawcett aggressively as she could have been, because he didn’t want her to lose her hair! “Her hair is her identity!” ARE YOU KIDDING ME? Her hair had not been her identity since the early 80s! Hair grows back! But hey, that’s just my opinion. See what I mean?
But is there a study out there that asks the questions of the patients and caregivers what they think their QOL is now, after SCT or maintenance, or management? I mean after all, can we all not agree universally that QOL is subjective?
I mean, how many of us have met a person in wheelchair and they are productive and happy? Our returning soldiers with limb loss, post traumatic stress disorders, etc. In history, they would have been abandoned as defective and holding back the betterment and survival of the group. We don’t view it that way anymore, Thank Goodness! But it is always the question when families are deciding what to do in regards to treatment, surgery or god forbid, pulling the plug. We deal with it with our elderly and the unborn, and always it comes down to “what kind of life will they have?” It is different for everyone. It is different for me as a caregiver looking at Dave and different for Dave as the patient.
So, if any of you Medicos happen across my blog, would someone please do a real study on this issue as it is determining healthcare professional’s advice and patient’s treatment choices with a “feeling” and not data that can be evaluated by those who will be most effected.
ARGH!!!!!
PS I watched a debate videotaped at a conference where one doctor (Barlogie) was slated to present the pro tandem SCT argument, and another doctor was presenting the pro single SCT, con tandem argument. All based on survival numbers, progression of the disease, mind-numbing statistics, etc. At the end, a few questions (not enough) from the other physicians in attendance. At one point the single SCT physician implored Barlogie to agree that his treatment protocol was so harsh on the patient and Barlogie’s answer was simple: “It is voluntary, and more than 80% of my patients come back to complete their treatment protocol.”
lori, if i may, i just want to say to paula that i, too, am so sorry for all you are going through. my hope is that by reaching out and telling your story as you have, you will garner much support and encouragement and know you are not alone. i am so glad you discovered lori’s blog -it’s been like a life-line to so many of us in myelomaville. you are on the right track – searching for answers, doing your best to think things through, and seeking the path that’s best for you. i wish you comfort and peace as you continue to find your way, and hope that you feel some relief from all the frustration and hurt you have been experiencing. sometimes, just being able to tell about it and FEEL that relief helps give clarity to all that’s swirling about in one’s head. warm hugs, karen
Dear Paula, I’m sorry this has been so rough on you. The communication and customer service at UAMS has dropped dramatically and quickly. I love them, but something dramatic changed last year and we are ALL struggling with the lack of anyone even picking up the front desk phone! With multiple attempts!
I will tell you this, the 2 SCT is often significantly easier than the first. Not for everyone, but for most. My husband Dave breezed through it while we looked at each other day after day waiting for the shoe to fall and it never did. The theory is that you are healthier, often in CR or very close to CR. Go figure. You don’t feel so healthy and the fatigue is crappy and profound. But compared to the first, which was pretty brutal, we sailed through the second as if it was just another day. Watch the Barlogie video presentations that are up and you will understand more fully why he feels two are better than one and is so harsh in his frontline approach to treating MM. Good luck with our decision. You will make the right one for you. Hugs!
Oh my this Blog took my breath away because this is exactly what I’m going through. I really didn’t know what aggressive meant until my first SCT with melphan, velcade and dex in Apr/May 2011. My association with cancer began in 2004—yes I’m a breast cancer patient too; losing my hear was better than having to deal with bad hair days. In fact, I think I’ll keep my hair very short anyway. My dilemma is there is no crystal ball for me to look into; I just don’t know whether to get the 2nd SCT or not. My questions revolve around those so similar to everyone it is both frightening and settling. My first SCT resulted in 30lbs of weight loss; absolutely no desire for food; low pot/mag and other counts still just okay. I was so sick after my return I was put in the hospital with pneumonia. Besides the physical strain on my body. the mental and emotional strain was compounded due to the lack of being able to talk to someone from AR to help me while I was in the hospital. My experience with the phone nurses did not met my expectations…and my expectations are minimul. The Drs called all the numbers I could give them…and I was very upset–no phone calls returned to my local oncologist–wow Finally after coming home, I got in touch was a person (secretary, assistant) who seemed to be so upset as to my dilemma. After assuring me my plight was unacceptable, I supposely received “personal cell phones and numbers.” OMG–I’ve sent 2 emails regarding short and simple questions about returning for my 2SCT but no answer. I’ve called and left mgs to return my call plz…nope. Don’t get me wrong there are some great nurses, secretaries, assistants, and Drs. As you well know, what we all want is one thing—just talk to me or answer me. At least tell me once you are giving me this protocol and these scheduled returns, etc, that’s it… My local Dr is more for maintenance now rather than 2SCT. He has given me much hope that he can keep me where I am right now by administering velcade or something else. He’ll (the DR) closely watch the blood results and I can plan my return for my 2SCT based on my physical condition. He studied in Jackson MS where they do SCTs, but he’s not big on the 2SCT. How do you like that? Oh I know there are others with far more worse experiences and that keeps me going. Thank God we don’t have to go to work…and we have so many other blessings too. My family supports whatever decision I make but what-they saw after my return scared them terribly. The date is scheduled…but I’m still undecided. I’m still riding the fence. I was told from a 74 year old man I saw while sitting in those lounge chairs….he said “give them a year and they will give them your life”. I guess that’s the choice I have to make…
Well, I’m sure we have all met or heard of people keeping an elderly parent alive well beyond what “we think” is wise. We sometimes feel, “let them go.” Then the other side of it is, if its fairly non invasive why not do it to extend their life. It really is such a personal choice and one many of us don’t have a lot of experience with the first go round. We learn as we go. But I just get tired of doctors presenting their opinion about a particular drug or treatment choice based on their opinion of QOL issues. I don’t think it is clear to a newly diagnosed patient that it is an opinion! Our local oncologist for instance refuses to do SCT or Thalidomide in treating MM because of PN and QOL. Well we had tandem AND Thalidomide and while certainly our lives changed, it was tolerable. It’s not for everyone and there in lies the rub. But to deny it unilaterally, when it may be exactly what a patient needs to survive is a form of malpractice, in my humble view. It’s all very difficult for a newly diagnosed family to sort out to be sure. I just think it would be nice to read real patients/caregivers take on what is good and bad about their life after a particular treatment course. Whether they have regrets. How they have adjusted their lives and if they are happy. Would they do it again? Inquiring minds want to know!
hi lori,
what a timely and important post! thanks for having the courage and insight to take on the disingenuous “concerns” about QOL that, in some arenas are just plain self-serving. a huge contribution to help inform a dialog that could be very slanted and mis-leading when patients and caregivers are struggling to make treatment decisions. and sandy, i loved your response too – very well said!
Yep, what might be QOL for one could be considerably ‘less than’ for another. This part of the equation, “X”, if I remember my algebra correctly, must be filled in by the patient – NOT by the doctors or medical team. But it is a critical part of the decision-making process and doctors absolutely must push their patients to put a value on “X” and not on the clinical trial or the pharmaceuticals or the potential for a journal article. Thanks for a great post!