Hi KarenaD,
Thank you for the thoughtful post. Part of the reason for starting this thread was to get patients to look at what is important to them and look at what their QOL is prior to and after starting a therapy. In line with what you had written, one of the things that is great for me as a younger patient is that things are back to normal with respect to me helping out my parents with doctors visits, etc. Prior to being diagnosed with myeloma, I took it for granted that I would be healthier than my parents and that I would be helping them out as they got older. It is a great feeling to be healthy again so I can help them out as they age.
Mark
Forums
Re: Quality of life
Mark11 wrote
I can certainly agree with that. My mom has had a lot of health problems over the years, but she's still hanging in there. When I was diagnosed, I decided that my first and most important goal would be to outlive her. Things are pretty tough for her, but having one of her kids pass away would be a misery beyond anything that could ever happen to her body.
Prior to being diagnosed with myeloma, I took it for granted that I would be healthier than my parents and that I would be helping them out as they got older. It is a great feeling to be healthy again so I can help them out as they age.
I can certainly agree with that. My mom has had a lot of health problems over the years, but she's still hanging in there. When I was diagnosed, I decided that my first and most important goal would be to outlive her. Things are pretty tough for her, but having one of her kids pass away would be a misery beyond anything that could ever happen to her body.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Quality of life
I agree MikeF. I could not imagine how a parent feels seeing their child go through this disease.
I just want to make one more post to show that health related QOL can actually be fairly subjective. Take note of my answers to the questions about 6 posts back and note the study showing the first treatment free interval as being when a myeloma patient is likely to experience their best quality of life. I had also commented earlier that if a medical professional / someone familiar with myeloma could look at a patients blood work they could get a good idea of what that patients health related quality of life is like.
Here is my relevant blood work from my last visit in late October:
Component Name Result Normal Range
WBC - Blood 4.4 000/ul 4.0 - 10.0 N
RBC Count - Blood 4.51 Mill/ul 4.3 - 6.0 N
Hgb - Blood 14.1 g/dl 12.7 - 16.7 N
Hematrocrit 42.0 % 39.2 - 50.0 N
MCV 93.1 fL 78.0 - 99.0 N
MCH 31.2 pg 26.0 - 40.0 N
MCHC 33.5 g/dl 32.0 - 36.0 N
Red Cell Distribution Width 13.5 % 0.0 - 15.0 N
Platelet Count 166 000/ul 140.0 - 440.0 N
MPV (Mean Platelet Volume) 7.2 fL 8.0 - 11.0 L
Neutrophil % 61.2 % - N
Lymphocyte % 25.8 % - N
Monocyte % 11.7 % - N
Eosinophil % 0.8 % - N
Basophil % 0.5 % - N
Granulocytes / Bands - Blood 2.690 000/ul 1.82 - 7.42 N
Lymphocytes - Blood 1.130 000/ul 0.85 - 3.0 N
Monocytes - Blood 0.510 000/ul 0.19 - 0.77 N
Eosinophils - Blood 0.040 000/ul 0.03 - 0.44 N
Basophils - Blood 0.020 000/ul 0.01 - 0.05 N
Component Name Result Normal Range
Beta2 Microglobulin Blood 1.6 mg/L 0.7 - 1.8 N
IgG 843.0 mg/dL 650.0 - 1600.0 N
IgA 139.0 mg/dL 70.0 - 400.0 N
IgM 64.8 mg/dL 40.0 - 230.0 N
Kappa Free Lt Chains (mg/dL) 0.9360 mg/dL - N
Lambda Free Lt Chains (mg/dL) 1.56 mg/dL - N
Kappa/Lambda Free Ratio 0.6000 - N
Immunofix Interp, Serum (T) See Comment
No monoclonal component detected. - N
Alpha-1-globulin 0.27 g/dl 0.2 - 0.35 N
Alpha-2-globulin 0.58 g/dl 0.45 - 1.0 N
Beta Globulin 0.71 g/dl 0.55 - 1.05 N
Hopefully they will look understandable. If someone has blood work like that, you would expect the answers to the questions I gave in the post above.
I hope I have shown that quality of life studies are far from showing a "happiness index". As a side note, I looked back at my blood work from 2011. That definitely looked like the blood work of someone that spent 70 plus days at medical providers! A whole lot of the letter "L" as opposed to "N" next to the reference ranges on that blood work. What a difference 4 years can make thanks to the advances that have been made for blood cancer patients.
I just want to make one more post to show that health related QOL can actually be fairly subjective. Take note of my answers to the questions about 6 posts back and note the study showing the first treatment free interval as being when a myeloma patient is likely to experience their best quality of life. I had also commented earlier that if a medical professional / someone familiar with myeloma could look at a patients blood work they could get a good idea of what that patients health related quality of life is like.
Here is my relevant blood work from my last visit in late October:
Component Name Result Normal Range
WBC - Blood 4.4 000/ul 4.0 - 10.0 N
RBC Count - Blood 4.51 Mill/ul 4.3 - 6.0 N
Hgb - Blood 14.1 g/dl 12.7 - 16.7 N
Hematrocrit 42.0 % 39.2 - 50.0 N
MCV 93.1 fL 78.0 - 99.0 N
MCH 31.2 pg 26.0 - 40.0 N
MCHC 33.5 g/dl 32.0 - 36.0 N
Red Cell Distribution Width 13.5 % 0.0 - 15.0 N
Platelet Count 166 000/ul 140.0 - 440.0 N
MPV (Mean Platelet Volume) 7.2 fL 8.0 - 11.0 L
Neutrophil % 61.2 % - N
Lymphocyte % 25.8 % - N
Monocyte % 11.7 % - N
Eosinophil % 0.8 % - N
Basophil % 0.5 % - N
Granulocytes / Bands - Blood 2.690 000/ul 1.82 - 7.42 N
Lymphocytes - Blood 1.130 000/ul 0.85 - 3.0 N
Monocytes - Blood 0.510 000/ul 0.19 - 0.77 N
Eosinophils - Blood 0.040 000/ul 0.03 - 0.44 N
Basophils - Blood 0.020 000/ul 0.01 - 0.05 N
Component Name Result Normal Range
Beta2 Microglobulin Blood 1.6 mg/L 0.7 - 1.8 N
IgG 843.0 mg/dL 650.0 - 1600.0 N
IgA 139.0 mg/dL 70.0 - 400.0 N
IgM 64.8 mg/dL 40.0 - 230.0 N
Kappa Free Lt Chains (mg/dL) 0.9360 mg/dL - N
Lambda Free Lt Chains (mg/dL) 1.56 mg/dL - N
Kappa/Lambda Free Ratio 0.6000 - N
Immunofix Interp, Serum (T) See Comment
No monoclonal component detected. - N
Alpha-1-globulin 0.27 g/dl 0.2 - 0.35 N
Alpha-2-globulin 0.58 g/dl 0.45 - 1.0 N
Beta Globulin 0.71 g/dl 0.55 - 1.05 N
Hopefully they will look understandable. If someone has blood work like that, you would expect the answers to the questions I gave in the post above.
I hope I have shown that quality of life studies are far from showing a "happiness index". As a side note, I looked back at my blood work from 2011. That definitely looked like the blood work of someone that spent 70 plus days at medical providers! A whole lot of the letter "L" as opposed to "N" next to the reference ranges on that blood work. What a difference 4 years can make thanks to the advances that have been made for blood cancer patients.
-
Mark11
Re: Quality of life
Here is another study that I thought was interesting. Mayo put together a set of health-related quality of life questions and measured patients pain and fatigue at diagnosis and they are able to correlate QOL to outcome using this data.
One finding of the study did surprise me.
I usually associate a reduction in pain with better response, but it did not matter in this study. Long term use of myeloma therapies can be related to fatigue and reduced general quality of life, even if they are effective, so that finding was not as surprising to me.
Reference:
P Shilpa, "Quality of Life and Outcomes in Multiple Myeloma Patients," ASH 2014 annual meeting abstract 2605 (link to abstract)
Abstract:
Background: Multiple Myeloma (MM) patients have a substantially reduced Health related Quality of Life (HQOL) at diagnosis due to disease related symptoms like bone pain (58%) and fatigue (32%). HQOL monitoring is becoming increasingly important, owing to improved survival and the impact of treatment-related toxicity. As a result HQOL assessments are increasingly being used in clinical trials, but the literature regarding the relationship between HQOL and outcomes in MM is sparse. We used the Mayo Clinic “Hematology Patient Reported Symptom Screen” (HPRSS) to assess the impact of HQOL on outcomes in newly diagnosed patients with MM.
Methods: We retrospectively reviewed charts of 453 patients with newly diagnosed MM seen at Mayo Clinic, Rochester from 2009 to 2014. All patients who visit Mayo clinic hematology clinic complete a 3-point questionnaire (HPRSS) on pain, fatigue and quality of life (QOL) (scored on a scale of 0-10; with 0 being the least fatigue or pain and 10 being the best QOL). Pain, fatigue and QOL scores documented at the time of diagnosis and at 6 months were collected. JMP version 10 was used for the data analysis.
Results: The median age at diagnosis was 67 years (range, 33-95); 60% were male. The estimated median OS for the cohort was 21 m (95% CI19, 23); 387 (85%) of the patients were alive at last follow up and the median OS for the population was not reached. The median (IQR) scores for pain, fatigue and QOL were 4 (2, 6), 3 (1, 5), and 7 (5, 9), respectively. First, we examined the relationship between each of the scores (dichotomized at the median) and the baseline characteristics. Higher fatigue scores were associated with lower Hb and serum albumin and higher beta 2 microglobulin, LDH and marrow plasmacytosis. Higher pain scores were seen in female patients, and associated with higher B2M, serum calcium and lytic bone lesions. Lower QOL scores were associated with lower absolute lymphocyte count and serum albumin levels. Next, we examined the relationship between the scores and the OS from diagnosis. The overall survival was inferior for patients with higher pain scores, fatigue scores and lower QOL scores (Figure). In a multivariable analysis, fatigue scores were most strongly associated with survival outcome. Patients with adverse scores in two or more of pain, fatigue and QOL had significantly inferior outcomes (Figure). In univariate analysis, age, B2M, LDH, FISH high risk and the presence of two or more adverse scores were all significantly associated with poorer OS. In a multivariable analysis, age, LDH and the presence >=2 adverse scores were all associated with shorter OS.
Of the 453 patients included in the study, 222 patients had pain, fatigue and QOL scores at 6 month from diagnosis. At 6 months, the median (IQR) scores for pain, fatigue and QOL were 2 (1, 5), 4 (2, 5), and 7 (5, 9), respectively; suggesting improved pain, worsened fatigue and static QOL scores. Improvement in the scores by at least one point was seen in 50%, 49% and 38% for the fatigue, pain and QOL scores. While the pain and fatigue scores at 6 months correlated inversely with OS, improvements in the scores in any of the three were not associated with any improved outcomes.
Conclusion: A simple, patient reported scoring system for pain, fatigue, and overall perceived QOL at the time of diagnosis is a powerful predictor of survival outcomes in patients with newly diagnosed MM and should be considered routinely in clinical practice. The results of these patient reported measures can be utilized to develop risk-adapted trials in patients with MM.
One finding of the study did surprise me.
While the pain and fatigue scores at 6 months correlated inversely with OS, improvements in the scores in any of the three were not associated with any improved outcomes.
I usually associate a reduction in pain with better response, but it did not matter in this study. Long term use of myeloma therapies can be related to fatigue and reduced general quality of life, even if they are effective, so that finding was not as surprising to me.
Reference:
P Shilpa, "Quality of Life and Outcomes in Multiple Myeloma Patients," ASH 2014 annual meeting abstract 2605 (link to abstract)
Abstract:
Background: Multiple Myeloma (MM) patients have a substantially reduced Health related Quality of Life (HQOL) at diagnosis due to disease related symptoms like bone pain (58%) and fatigue (32%). HQOL monitoring is becoming increasingly important, owing to improved survival and the impact of treatment-related toxicity. As a result HQOL assessments are increasingly being used in clinical trials, but the literature regarding the relationship between HQOL and outcomes in MM is sparse. We used the Mayo Clinic “Hematology Patient Reported Symptom Screen” (HPRSS) to assess the impact of HQOL on outcomes in newly diagnosed patients with MM.
Methods: We retrospectively reviewed charts of 453 patients with newly diagnosed MM seen at Mayo Clinic, Rochester from 2009 to 2014. All patients who visit Mayo clinic hematology clinic complete a 3-point questionnaire (HPRSS) on pain, fatigue and quality of life (QOL) (scored on a scale of 0-10; with 0 being the least fatigue or pain and 10 being the best QOL). Pain, fatigue and QOL scores documented at the time of diagnosis and at 6 months were collected. JMP version 10 was used for the data analysis.
Results: The median age at diagnosis was 67 years (range, 33-95); 60% were male. The estimated median OS for the cohort was 21 m (95% CI19, 23); 387 (85%) of the patients were alive at last follow up and the median OS for the population was not reached. The median (IQR) scores for pain, fatigue and QOL were 4 (2, 6), 3 (1, 5), and 7 (5, 9), respectively. First, we examined the relationship between each of the scores (dichotomized at the median) and the baseline characteristics. Higher fatigue scores were associated with lower Hb and serum albumin and higher beta 2 microglobulin, LDH and marrow plasmacytosis. Higher pain scores were seen in female patients, and associated with higher B2M, serum calcium and lytic bone lesions. Lower QOL scores were associated with lower absolute lymphocyte count and serum albumin levels. Next, we examined the relationship between the scores and the OS from diagnosis. The overall survival was inferior for patients with higher pain scores, fatigue scores and lower QOL scores (Figure). In a multivariable analysis, fatigue scores were most strongly associated with survival outcome. Patients with adverse scores in two or more of pain, fatigue and QOL had significantly inferior outcomes (Figure). In univariate analysis, age, B2M, LDH, FISH high risk and the presence of two or more adverse scores were all significantly associated with poorer OS. In a multivariable analysis, age, LDH and the presence >=2 adverse scores were all associated with shorter OS.
Of the 453 patients included in the study, 222 patients had pain, fatigue and QOL scores at 6 month from diagnosis. At 6 months, the median (IQR) scores for pain, fatigue and QOL were 2 (1, 5), 4 (2, 5), and 7 (5, 9), respectively; suggesting improved pain, worsened fatigue and static QOL scores. Improvement in the scores by at least one point was seen in 50%, 49% and 38% for the fatigue, pain and QOL scores. While the pain and fatigue scores at 6 months correlated inversely with OS, improvements in the scores in any of the three were not associated with any improved outcomes.
Conclusion: A simple, patient reported scoring system for pain, fatigue, and overall perceived QOL at the time of diagnosis is a powerful predictor of survival outcomes in patients with newly diagnosed MM and should be considered routinely in clinical practice. The results of these patient reported measures can be utilized to develop risk-adapted trials in patients with MM.
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Mark11
Re: Quality of life
Pain is the problem with my quality of life. Pain pills just do not work. The constant pain and little or no sleep makes life horrible for my loving wife, children, and friends.
Start a new drug regimen Wednesday and hopefully will help with the quality of life.
Stay positive and hope for results
Tom74
Start a new drug regimen Wednesday and hopefully will help with the quality of life.
Stay positive and hope for results
Tom74
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Tom74 - Name: Tom Meredith
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 9/5/15
- Age at diagnosis: 73
Re: Quality of life
Hi Tom74,
I know what you mean about the pain myeloma can bring. Back when I was first diagnosed, I was living off of narcotic pain meds. Fortunately I have been off those for over 5 years now. Best of luck that the new combo will knock the myeloma out and improve your quality of life.
TracyJ mentioned palliative care earlier in the thread. There was an article about it recently in the New York Times. Maybe you could check into it to help with the pain.
Reference:
Paula Span, "In Palliative Care, Comfort Is the Top Priority," The New York Times, Feb 12, 2016 (full text of article)
Mark
I know what you mean about the pain myeloma can bring. Back when I was first diagnosed, I was living off of narcotic pain meds. Fortunately I have been off those for over 5 years now. Best of luck that the new combo will knock the myeloma out and improve your quality of life.
TracyJ mentioned palliative care earlier in the thread. There was an article about it recently in the New York Times. Maybe you could check into it to help with the pain.
Because most people with serious illnesses are older, seniors and caregivers should understand that palliative care offers more care as needed, not less. Unlike hospice, patients can use it at any point in an illness – many will “graduate” as they recover – without forgoing curative treatment.
Like hospice, however, palliative care focuses on quality of life, providing emotional and spiritual support for patients and families, along with drugs and other remedies to ease symptoms. Its practitioners help patients explore the complex medical decisions they often face, then document their preferences.
It pays off for patients and families. In 2010, a randomized trial of 151 patients with metastatic lung cancer at Massachusetts General Hospital found that those who received early palliative care scored significantly higher on quality of life measures than those receiving standard care, and were less likely to suffer from depression.
Reference:
Paula Span, "In Palliative Care, Comfort Is the Top Priority," The New York Times, Feb 12, 2016 (full text of article)
Mark
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Mark11
Re: Quality of life
Thanks, Mark. Narcotics help with the bone pain, but nothing helps with the neuropathy.
Staying positive and hoping for the best.
Tom74
Staying positive and hoping for the best.
Tom74
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Tom74 - Name: Tom Meredith
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 9/5/15
- Age at diagnosis: 73
Re: Quality of life
Just saw this new study. Does not break any new ground but gives some of the more common reasons for reduced quality of life for patients on treatment and also mention palliative care as something that could be beneficial for patients on treatment.
BACKGROUND:
Knowledge of health-related quality of life (QoL) of patients with multiple myeloma on disease-modifying treatments is limited.
AIM:
(1) Determine symptom prevalence in patients with multiple myeloma on disease-modifying treatment. Identify the range and nature of these symptoms within the dimensions of physical, psychological, social, and financial well-being.
(2) Measure self-reported QoL.
(3) Compare the above-mentioned parameters to the general population and patients with advanced cancer.
METHOD:
Adults with multiple myeloma on disease-modifying treatment, attending the hematology day unit in a tertiary referral center from November 2012 to January 2013, were eligible for inclusion in a cross-sectional quantitative survey. Consenting patients completed 2 validated questionnaires, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) supplemented by the myeloma-specific module (EORTC QLQ-MY20) and the Hospital Anxiety Depression Score (HADS).
RESULTS:
Forty-one patients were included for analysis: 59% were male and 41% were female. Mean age was 63.7 years (range 46-86, standard deviation 11.24). The QoL scores were significantly lower than the general population and comparable to those with advanced cancer. The most commonly reported physical symptoms were pain (66%), fatigue (63%), and dyspnea (51%). About 54% of the patients were burdened by financial worries. Anxiety (30%) and depression (37%) were prevalent.
CONCLUSION:
Patients with myeloma on disease-modifying treatment have a lower QoL than the general population and are symptomatic across physical, psychological, financial, and social domains. A holistic approach to patient care is warranted, and patients may benefit from specialist palliative care input.
Reference:
Kiely, F, et al, "Self-reported quality of life and symptom burden in ambulatory patients with multiple myeloma on disease-modifying treatment," American Journal of Hospice & Palliative Medicine, May 2, 2016 (abstract)
Mark
BACKGROUND:
Knowledge of health-related quality of life (QoL) of patients with multiple myeloma on disease-modifying treatments is limited.
AIM:
(1) Determine symptom prevalence in patients with multiple myeloma on disease-modifying treatment. Identify the range and nature of these symptoms within the dimensions of physical, psychological, social, and financial well-being.
(2) Measure self-reported QoL.
(3) Compare the above-mentioned parameters to the general population and patients with advanced cancer.
METHOD:
Adults with multiple myeloma on disease-modifying treatment, attending the hematology day unit in a tertiary referral center from November 2012 to January 2013, were eligible for inclusion in a cross-sectional quantitative survey. Consenting patients completed 2 validated questionnaires, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) supplemented by the myeloma-specific module (EORTC QLQ-MY20) and the Hospital Anxiety Depression Score (HADS).
RESULTS:
Forty-one patients were included for analysis: 59% were male and 41% were female. Mean age was 63.7 years (range 46-86, standard deviation 11.24). The QoL scores were significantly lower than the general population and comparable to those with advanced cancer. The most commonly reported physical symptoms were pain (66%), fatigue (63%), and dyspnea (51%). About 54% of the patients were burdened by financial worries. Anxiety (30%) and depression (37%) were prevalent.
CONCLUSION:
Patients with myeloma on disease-modifying treatment have a lower QoL than the general population and are symptomatic across physical, psychological, financial, and social domains. A holistic approach to patient care is warranted, and patients may benefit from specialist palliative care input.
Reference:
Kiely, F, et al, "Self-reported quality of life and symptom burden in ambulatory patients with multiple myeloma on disease-modifying treatment," American Journal of Hospice & Palliative Medicine, May 2, 2016 (abstract)
Mark
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Mark11
Re: Quality of life
Hi Mark,
It's been a long time since my last post, my quality of life is pretty good at the moment and it appears yours is as well. What I wanted to say is Happy 5th Anniversary since your allo (or it must be pretty close for you) - mine was the end of April.
Stay well,
Libby
It's been a long time since my last post, my quality of life is pretty good at the moment and it appears yours is as well. What I wanted to say is Happy 5th Anniversary since your allo (or it must be pretty close for you) - mine was the end of April.
Stay well,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Quality of life
Thank you, Libby. It is great to see you post again and congratulations! We made it!!!
I do not remember if you posted if you had any contact with your donor? I had called mine last week to tell her that all my tests came back with no signs of any disease. I really cannot imagine there is another procedure like an allo transplant from an unrelated donor. One person helping another for no monetary gain, etc. I definitely felt like the luckiest person on earth to be able to make that call.
Knowing that you are still doing well made my day!
I do not remember if you posted if you had any contact with your donor? I had called mine last week to tell her that all my tests came back with no signs of any disease. I really cannot imagine there is another procedure like an allo transplant from an unrelated donor. One person helping another for no monetary gain, etc. I definitely felt like the luckiest person on earth to be able to make that call.
Knowing that you are still doing well made my day!
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Mark11
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