Ryan McDonald

 asks its readers to share their thoughts with a #CureConnect discussion question.

This past week, we asked: “What do you wish those without cancer could understand about your experience with the disease?”

Here’s what some of our readers shared:

“That just because I don't look sick, it doesn't mean that my disease isn't wreaking havoc on the inside of my body. I was diagnosed with de novo metastatic breast cancer six years ago. While my disease remains stable, the medications and changes in my body is felt every day. (metastatic breast cancer) is treatable but has no cure, so yes, it's terminal and many people don't understand that.” – S.D.

“Cancer doesn’t discriminate based on age. I heard, ‘you’re too young for cancer’ repeatedly.” – R.J.

“That it’s a long journey and the effects of it are often lifelong. We’re never going to be the same as we were before cancer.” – G.N.

“That it's a constant fear that I carry with me every single day. I agree with (a previous) comment that even if you might get yourself to look put together on the outside, on the inside, you might be feeling extreme fatigue or anxiety on a regular basis. Cancer, the treatment and the survival are exhausting.” – T.V.

“Living on the edge of death is living on a different level of awareness and perception.” – T.S.

“That it's a very lonely journey even with family and friends around you. They can and will never know what we go through or what goes on in our head. And even though we look well, we are terrified every day of every ache and pain we get in case it has returned.” – O.M.

“That it may not show on the outside, but it hurts on the inside.” – L.A.

“While suffering bouts of side effects, worry, never-ending appointments, there’s still laundry and cooking to be done, housework, etc. Life goes on every day but with extra baggage that increases (new problems caused by side effects). Stage 4 ovarian cancer, going into year five of survival.” -V.D.

“That having cancer does not mean you either get cured or die. Many of us out here are living with incurable cancers and thriving.” – D.K.

“People don’t lose their battle to cancer. Cancer is a deadly disease that inexplicably takes some and leaves some. Positive thoughts are not required of the patient either. Telling someone to ‘think positively’ just piles the shame on.” – E.C.

“I have told many that the underlying stress they are feeling now with COVID is like the cancer survivor's experience.” – A.D.

For more news on cancer updates, research and education, don’t forget to

Articles

On social media, CURE® recently asked its readers to share what they wished people without cancer could understand about their experiences with the disease.

What Do Patients With Cancer Wish Those Without the Disease Could Understand About Their Experiences?

There have recently been several updates regarding the quality of life of patients receiving treatment for various cancers. Here, 

® looks back at some news and updates surrounding quality of life improvements that patients may have missed.

1) Interventions Improve Survival, Quality of Life for Patients Experiencing Financial Toxicity

Not only did a three-step intervention improve survival rates in patients with high-risk hematologic malignancies, but patients also reported better physical and mental health afterward. 

2) Patients With Aggressive Lymphomas Experience Major Quality of Life Improvements One Year After Diagnosis

Patients with aggressive lymphoma tended to have major improvements in quality of life (QOL) after one year, compared to baseline QOL at diagnosis. Then, QOL increases continued upward for years to come. 

3) Possible Future Treatment Shows Better Quality of Life in Patients with Ovarian Cancer

Keytruda (pembrolizumab) in combination with Avastin (bevacizumab) and oral metronomic cyclophosphamide demonstrated improved efficacy, safety and quality of life in patients with recurrent platinum-sensitive, platinum-resistant, or refectory epithelial ovarian, fallopian tube or primary peritoneal cancer. 

4) Patients With Lung Cancer Subset Report Better Quality of Life, Improved Survival After Treatment with Lorbrena

Patients with ALK-positive non-small cell lung cancer who received Lorbrena reported better quality of life and had longer progression-free survival than patients who received Xalkori. 

5) Savoring Every Ounce of Life While Undergoing Treatment for Skin Cancer

 Talks Cancer” podcast, one patient discusses what his journey with skin cancer has been like, as well as his decision to switch to a new therapy once his previous therapy stopped working. He also offers others facing similar situation advice and chronicles why he’s focused on quality rather than quantity. 

6) Triple Therapy with Darzalex Improves Pain, Quality of Life in Newly Diagnosed Multiple Myeloma Ineligible for Stem Cell Transplantation

Quality of life improved in patients treated with Darzalex, Revlimid and dexamethasone compared with Revlimid and dexamethasone, and were present regardless of age, functional status and the depth of their treatment response. 

7) Counseling, Targeted Interventions Needed to Improve Health-Related Quality of Life in Young Colon Cancer Survivors

The researchers concluded that the overall low health-related quality of life scores for young colorectal cancer survivors in the categories of social and functional well-being should be targeted by appropriate methods, which could include counseling and quality of life interventions. 

For more news on cancer updates, research and education, don’t forget to 

CURE® compiled a roundup of several recent news and updates involving quality of life improvements that patients with cancer may have missed.

7 Recent Cancer-Related Quality of Life Updates Patients May Have Missed

There has been countless news and updates involving COVID-19 during the last several months of the pandemic. Here, 

® looks back at some of the information regarding the virus and its connection to cancer that patients may have missed.

With the multiple COVID-19 vaccines authorized by the Food and Drug Administration, one cancer survivor weighs the pros and cons of receiving a vaccine and what more information is needed. 

Talks Cancer” podcast, a teenager who was diagnosed with Hodgkin lymphoma at the start of the COVID-19 pandemic discusses her cancer journey and what it was like to receive treatment during the pandemic. 

Nearly one in five patients with cancer reported that they were less likely to enroll in a clinical trial due to fears of COVID-19 exposure. 

®, an expert explains the importance of clinical trials during the COVID-19 pandemic and how clinicians must find a way to help ease patient anxiety as they return to the clinic. 

If a patient with cancer is no longer receiving active treatment and there are no signs of active disease, experts from The University of Texas MD Anderson Cancer Center suggest they should have a good response to the COVID-19 vaccine, however, direct data on this is not yet available. 

CURE® compiled a roundup of five recent pieces of COVID-19 news and updates that patients with cancer may have missed.

5 Recent COVID-19 News and Updates That Patients With Cancer May Have Missed

The Food and Drug Administration (FDA) recently granted priority review to the biologics license application for retifanlimab for the treatment of adults with locally advanced or metastatic squamous cell carcinoma of the anal canal who did not tolerate, or whose disease progressed while receiving, platinum-based chemotherapy, according to Incyte, the agent’s manufacturer.

“Patients with (squamous cell carcinoma of the anal canal) who have progressed after firstline chemotherapy treatment currently have no approved treatments available, and we are encouraged that the FDA’s acceptance of this (biologics license application) for priority review brings us one step closer to addressing this historically neglected, yet important, tumor,” Dr. Lance Leopold, group vice president of Immuno-Oncology Clinical Development at Incyte, said in the release. “Despite (squamous cell carcinoma of the anal canal) being a rare disease, its incidence is increasing, and its impact is profound.”

The filing was based on results of the single-arm, multi-center phase 2 POD1UM-202 trial, in which treatment with retifanlimab induced a objective response (complete or partial responses to therapy) in some previously treated patients with locally advanced or metastatic squamous cell carcinoma of the anal canal.

The trial comprised 94 patients, including several with well-controlled HIV infection. Data, which was recently presented at a medical conference, indicated that monotherapy with the PD-L1 inhibitor led to an objective response rate of 14% in patients within the trial. Fatigue and diarrhea were the most common (more than 20%) side effects associated with treatment.

Squamous cell carcinoma of the anal canal accounts for approximately 3% of digestive system cancers and is associated with HPV and HIV infections, according to the release. The manufacturer notes that there are no FDA-approved treatments for those whose disease has progressed after receiving chemotherapy at the onset of disease.

The agency is set to make its decision on whether to approve the therapy by the end of July 2021.

The priority review will focus on retifanlimab for the treatment of certain adult patients with locally advanced or metastatic squamous cell carcinoma of the anal canal who did not tolerate platinum-based chemotherapy. Currently, according to Incyte, there are no approved treatments for this patient population. 

Ryan McDonald | Contributors

What Do Patients With Cancer Wish Those Without the Disease Could Understand About Their Experiences?

7 Recent Cancer-Related Quality of Life Updates Patients May Have Missed

5 Recent COVID-19 News and Updates That Patients With Cancer May Have Missed

Novel Therapy Granted Priority Review By FDA for Treatment of Anal Cancer Subset

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