Very few folks really grasp what it is like to LIVE with cancer - unless you are that person. Granted, if you are lucky, as I am, you have a few of those understanding peeps in your life, but most folks want to move on from the whole experience. The cancer patient doesn't have that luxury. Obviously, we cancer peeps approach our existence in different ways. Some are almost paralyzed by fear of cancer's return. Some are able to deal with things fairly well until some "symptom"- likely caused by something completely unrelated, crops up - leading to absolute and debilitating certainty that their cancer is back. Others are undone by follow-up scans and the anxiety awaiting results provokes. Even the thought of lovely future events, become almost frightening and worrisome in the life of a cancer patient as we have less certainty of being around to enjoy them than does the average cancer-free person. While some of us, due to our own personality, the support we have, the approach we take to life (and death), and just simple quirks of fate, deal with our cancerous existence more easily, we ALL face fearful moments. When dealing with only one cancer diagnosis, albeit Stage IV melanoma, BEFORE I was able to attain systemic treatment of any sort, but AFTER the removal of the upper lobe of one lung and radiation to a brain met, I wrote this: Looking forward - September 2010 And here, in 2018, NED for melanoma for 8 years, but unaware that in a few short months I will be diagnosed with an incredibly rare Ex-goblet cell adenocarcinoma of the appendix, I penned this: Where I've been, where I'm going ~ Fractals! Then, in the midst of chemo for Cancer #2, these were my musings: Polka dot binding personally produced ~ Possible inspo #SEWFROSTING ~ and Profound Ponderings
Health-related quality of life, emotional burden, and neurocognitive function in the first generation of metastatic melanoma survivors treated with pembrolizumab: a longitudinal pilot study. Rogiers, Leys, DeCremer, et al. Support Care Cancer. 2019 Nov.
Survivors were defined as patients who achieved a durable remission for at least 6 months after initiating pembrolizumab in a single-center observational study (N = 141). A semi-structured interview was performed at baseline. Neurocognitive computerized testing and patient-reported outcomes were collected at 4 time points to assess HRQoL using the EORTC QLQ-C30 and the HADS to assess anxiety and depression.
Out of 35 eligible patients, 25 were recruited and completed baseline assessment (18 female; median age 58 years [range 28-86]; 24 completed the 1-year follow-up phase. Median time since diagnosis was 30 months (range 12-84); median time since initiation of pembrolizumab was 19 months (range 6-42). At all visits, survivors reported a significantly lower global HRQoL, lower physical, emotional, cognitive, role, and social functioning compared with the European Mean of the healthy population. Fifteen patients (64%) had clinical levels of anxiety/depression at one time point during follow-up. The clinical interview revealed that 12 patients (48%) suffered from Cancer-Related-Post-Traumatic-Stress disorder, of whom 7 (28%) developed transient suicidal ideation, 1 patient made a suicide attempt. Neurocognitive testing revealed cognitive impairment in 8 patients (32%).
Metastatic melanoma survivors, treated successfully with pembrolizumab, are at risk for suffering from emotional distress and neurocognitive impairment with a persistent impact on their HRQOL. Timely detection in order to offer tailored care is indicated.
More than half of the 25 peeps in this study - 30 months post their melanoma diagnosis and 19 months since starting pembro - experienced significant anxiety/depression, almost half suffered from traumatic stress, and more than a quarter pondered suicide, with one attempting. Not that we needed a study to tell us, but even effective treatment for melanoma leaves many with scars.
Longitudinal associations between coping strategies, locus of control and health-related quality of life in patients with breast cancer or melanoma. Toscano, Blanchin, Bourdon, et al. Qual Life Res. 2020 Jan 1.
The objective of this longitudinal study was to assess the association of LOC (Cancer Locus-of-Control Scale) and coping (Brief Cope) changes, with change in HRQoL (EORTC QLQ-C30) over time in newly diagnosed breast cancer and melanoma patients at 1, 6, 12, and 24 month post-diagnosis. Mixed models were used to compare LOC and coping longitudinal changes as well as their associations with HRQoL changes in early-stage breast cancer and melanoma patients.
Overall, 215 breast cancer and 78 melanoma patients participated in the study. At baseline, HRQoL levels were often higher for breast cancer compared to melanoma patients. For breast cancer and melanoma patients, negative coping strategies and perceived control over the course of illness were negatively and positively associated with HRQoL changes, respectively. For breast cancer patients only, emotional coping and internal causal attribution were negatively associated with HRQoL changes. For both cancer sites, living with a partner correlated with worse HRQoL.
Understanding coping strategies and LOC beliefs used by patients soon after their cancer diagnosis and over the course of illness can help identifying psychological and supportive care to modify maladaptive thoughts and beliefs and promote more adaptive behaviors to ultimately improve patients' well-being and HRQoL.
To be honest, not entirely sure what this word salad is saying - other than how folks respond to life after the life changing experience of either breast cancer or melanoma varies and is impacted by many things. I do think having almost 3 times the number of breast cancer patients than those with melanoma may well skew any comparisons made between the two.
Then, this:
A cross-sectional postal survey was conducted in Victoria, Australia, with eligible melanoma survivors identified from a population-based cancer registry. Patient-reported outcome measures included the EuroQoL 5-Dimension 5-Level (EQ-5D-5L), and self-reported symptoms, difficulties and information needs. Associations between demographic, disease and care-related factors and QoL were also assessed.
A total of 476 melanoma survivors participated in the study (response rate 46.5%). Anxiety and depressive symptoms were more prevalent in survivors compared to the general population (30.7% vs 21.6%). Fear of cancer recurrence (48.3%) and fear of cancer spreading (37.8%) were the most commonly reported symptom items, and approximately one in five melanoma survivors had unmet information needs related to psychological aspects of living with melanoma. Recurrent melanoma, living in a nursing home, chronic comorbidities, and melanoma diagnosed at greater than 2 mm thickness were associated with lower QoL.
A large proportion of melanoma survivors reported ongoing quality of life deficits, fear of cancer recurrence, as well as unmet information needs up to 5 years after diagnosis. Patients may benefit from tailored informational resources and interventions that address the psychological aspects of living with and beyond melanoma.
Among these 476 melanoma peeps, the researchers found they were more anxious and depressed than the average Joe. (Gotta love science!) Almost half feared a cancer recurrence and over a third feared cancer spreading. One in five felt that they were not coping well and had no support to facilitate improvement in that regard. Being in a nursing home, having other illnesses or a more vicious melanoma diagnosis made things worse. Well, duh!
Feasibility and Acceptability of Fear-Less: A Stepped-Care Program to Manage Fear of Cancer Recurrence in People with Metastatic Melanoma. Lynch, Katona, Jefford, et al. J Clin Med. 2020 Sept.
Immunotherapies and targeted therapies have revolutionized
treatment of metastatic melanoma and improved survival rates. However,
survivors treated with novel therapies are vulnerable to high levels of fear of
cancer recurrence or progression (FCR). Existing FCR interventions have rarely
been trialled in people with advanced cancer. The current study aimed to
evaluate the acceptability and feasibility of Fear-Less: a stepped-care model
to treat FCR in people with metastatic melanoma treated with immunotherapy or
targeted therapy. Sixty-one outpatients with metastatic melanoma were screened
using the Fear of Cancer Recurrence Inventory Short Form (FCRI-SF) and Fear of
Progression Questionnaire Short Form (FoP-Q-SF). Survivors with subthreshold
FCR were stratified to a self-management intervention while those with clinical
levels of FCR were provided with an individual therapy, Conquer Fear. Survivor
experience surveys and rescreening were administered post-intervention
completion. Results indicated that Fear-Less was an acceptable and feasible FCR
intervention. Results provided preliminary support for the potential impact of
Fear-Less in reducing FCR. Fear-Less is a promising first step in providing an
acceptable and feasible stepped-care model to treat FCR in survivors with
metastatic disease.
Association of health-related quality of life (HRQoL) and treatment safety with nivolumab (NIVO) in patients (pts) with resected stage IIIB/C or IV melanoma: Analysis of CheckMate 238 four-year follow-up (FU) data. Weber, Gogas, Sun, et al. ASCO 2021.
Background: In CheckMate 238, NIVO 3 mg/kg vs ipilimumab 10 mg/kg showed significantly longer recurrence-free survival and a lower rate of grade 3–4 treatment-related adverse events (TRAEs) in pts with completely resected stage IIIB/C or IV melanoma. This analysis assessed the association of long-term HRQoL and TRAEs in NIVO-treated pts in this trial.
Methods: HRQoL was assessed using EORTC QLQ-C30 (global health status [GHS] and physical/emotional functioning) and EQ-5D-3L visual analogue scale (VAS) questionnaires administered after randomization, during 1 y of treatment (wk 5, 7, 11, 17, 25, 37, and 49), at posttreatment FU visits 1 and 2 (FU1 and FU2; 30 and 114 days after last dose), and at survival FU visits up to 4 y after last dose (EQ-5D-3L only). NIVO-treated pts were grouped based on whether they had experienced a grade 3–4 TRAE, any-grade TRAE leading to NIVO discontinuation, or any-grade select (immune-related) TRAE on treatment or up to 100 days after last dose. Longitudinal change from baseline (BL) in scores was assessed for pts with and without TRAEs having patient-reported outcome data at BL and greater than/= to1 post-BL assessment (HRQoL population) using descriptive statistics. QLQ-C30 subscale and VAS changes of 10 and 7, respectively, were considered clinically meaningful.
Results: The HRQoL population comprised 446 of 453 pts randomized to NIVO. EQ-5D-3L assessments were completed by 81% of survivors (263/324) after 4 y post-randomization. Grade 3–4 TRAEs occurred in 17% of NIVO-treated pts (77/446). A slight trend toward deterioration of GHS from BL on treatment was noted, with clinically meaningful deterioration at posttreatment FU1 and FU2. For the VAS, a similar trend on treatment was noted, with a clinically meaningful deterioration after NIVO discontinuation and a return to BL level by the start of survival FU. For pts without grade 3–4 TRAEs, mean change from BL scores remained stable (ie, no clinically meaningful deterioration on treatment or during FU). Any-grade TRAEs led to NIVO discontinuation in 9% of pts (42/446); HRQoL findings were similar to those for pts with grade 3–4 TRAEs. The most common any-grade TRAE was fatigue (35%). No clinically meaningful deterioration in VAS was noted for any select TRAE during FU except for hyperthyroidism (8%), with which deterioration occurred at FU1. EORTC QLQ-C30 physical and emotional functioning results will be presented.
Conclusions: In CheckMate 238, pts with TRAEs showed early HRQoL deterioration after NIVO discontinuation, but HRQoL returned to BL levels with no sustained deterioration during survival FU. Overall, HRQoL was maintained on treatment and over a long-term FU period in pts with resected melanoma receiving adjuvant NIVO. Clinical trial information: NCT02388906.
- Do the best you can.
- Know that you are not alone - even though it can feel very much as though you are. Everybody else is struggling to tread water, too!
- Seek out, even though it is ever so hard when struggling, support resources - cancer groups (whether in-person or on-line), social services, help from friends and family.
- Ask your oncologist for psychological support services. Larger groups often have them in house. Others can certainly refer you.
Te Veo siempre
ReplyDeleteTe veo con mis ojos y mi corazon!
DeleteThanks for this. I will return to absorb more of the "word salad".
ReplyDeleteHang in there! You got this!
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