Living ≠ life, so that patients can return to normal life, this is what we are pursuing

Anxiety at the time of diagnosis, collapse at the time of recurrence, standardization at the time of initial treatment, seriousness in maintenance, determination when returning to society, the mental journey and treatment experience of follicular lymphoma (FL) patients, as if winter, spring, summer and autumn, bear different challenges and witness unique scenery of the four seasons

The "winter solstice" of life – when a diagnosis or recurrence comes

Mr.

Professor Zhang Huilai: To care for patients, first of all, we must put ourselves in their shoes, understand the anxiety they produce when they get the pathology report, but also to enlighten that FL is an indolent lymphoma, the survival rate of more than ten years is more than 80% or even 90%, it is treated as a chronic disease to manage, as long as actively cooperate with treatment, relax the mood, then it is entirely possible to enjoy a quality of life

Mr.

Professor Zhang Huilai: First, to inform the relapsed patient whether it meets the treatment indications, if there is no treatment indication, it is still only necessary to observe and wait, and do a good job of follow-up; The second is to do a good job of post-relapse examination, which may include PET-CT, biopsy, genetic testing, etc.

Mr.

The "spring" of life - when the beginning of positive initial treatment

Mr.

Professor Zhang Huilai: For newly treated patients, the first thing is to strictly follow the guidelines to standardize treatment
.
Now in the era of new drug treatment, the current otolizumab medical insurance approved reimbursement of the indications is combined with chemotherapy, for the initial treatment of stage II with large mass, stage III or IV follicular lymphoma adult patients, patients who have achieved at least partial remission are then treated with otolizumab maintenance therapy
.
The indication does not yet cover the entire line of patients, and individuals call for the need to expand the coverage
of Medicare indications.
Otolizumab can be combined with lenalidomide, bentamustine, CHOP, or CVP, and different patients will have different suitable options
for these conventional first-line regimens.
With the recent increased accessibility of otolizumab, the standardized use of this drug is also very important, such as the standardized use of the first course of otolizumab treatment in newly diagnosed patients
1-8-15.

Professor Tao Rong: For newly treated patients, especially those with indications for treatment, the necessity of treatment and the goal
of treatment should be emphasized.
In addition, doctors should arrange time to communicate treatment plans with patients, inform patients of the reasons why they prefer to choose a certain plan, and communicate
fully.
At present, the domestic first-line treatment has been in line with international standards, with the domestic listing of ottozumab and medical insurance accessible, induction and maintenance treatment full coverage, patients have less economic burden, better PFS, and less
early progression.
With the widespread clinical use of otolizumab, the standard of treatment and management of FL patients should also be improved
.

Mr.
Gu Hongfei: Can FL patient management logs such as "Filterless Diary" help clinical follow-up and standardized treatment?

Professor Zhang Huilai: "Filterless Diary" can display the basic information of FL patients, reactions to different treatment options, and patients' living conditions after treatment, which is the patient's first-hand information, has a high reference value for doctors, and is also beneficial to the exchange of conditions and follow-up work, and I am also very much looking forward
to the promotion and application of "Filterless Diary".

The "summer solstice" of life - when entering the whole process of chronic disease management

Mr.
Gu Hongfei: After standardized treatment, patients begin to adapt to the new lifestyle, and gradually enter the FL chronic disease management or full management stage, what kind of care do patients need to receive at this stage?

Professor Zhang Huilai: Insisting on follow-up and doing a good job in maintenance treatment is the focus of
this stage.
Even if complete remission can be achieved during the induction phase, minimal residual disease (MRD) negative is still needed to maintain therapy
.
Unlike annual follow-up after 5 years of invasive lymphoma, follow-up of patients with FL requires long-term adherence of 3 to 6 months
.
Some patients do not know the characteristics of FL recurrence, and after several years of follow-up finding that there is no recurrence, they give up follow-up
.
By the time it finds a recurrence again, it will be too late
.
Therefore, this should be clearly stated in patient education, and insisting on follow-up does not affect the patient's normal work and life
.

Professor Tao Rong: FL patients are very active in cooperating with treatment during the initial treatment, but when they enter the maintenance stage, the patient's attention is significantly weakened, but maintenance treatment is beneficial to the improvement of patients' PFS and should be adhered to
.
In addition to maintenance medication, follow-up tests are also necessary
.
Through examination and evaluation, problems are detected in advance, rare and serious adverse reactions are avoided, and patients' treatment safety
is guaranteed.
In addition, after the progression of FL recurrence, some patients may have transformation, and such patients should be advised to pay attention to the possibility of transformation in follow-up, and if the symptoms progress rapidly in the short term, or the lymph nodes are enlarged, or the biochemical indicators such as lactate dehydrogenase are increased for a short time, it should be paid attention
to.

The "autumn equinox" of life – when life is harvested

Mr.
Gu Hongfei: Can FL patients return to society after treatment?

Professor Zhang Huilai: FL patients can completely return to normal work and life, and many patients who are married and have children normally encourage other FL patients to strengthen their confidence and actively cooperate with the doctor's treatment
.
Doctors need to remind patients that in the early rehabilitation stage, work pressure should not be too much and overwork, so as not to affect immune function and increase the
risk of recurrence.
At the same time, there is an emphasis on healthy living and eating
.

Mr.
Gu Hongfei: At the forum of the Lymphoma Home, some patients with relapses and refractory diseases gave birth to children after the disease was relieved and specially took their children to participate in the "Filterless Life" activity
.
The lives of FL patients have not stopped due to illness, and they, like ordinary people, continue to pursue the good life
in their hearts.

Professor Tao Rong: The response to the FL Patient Care Month series of activities is very enthusiastic, is there more activity plan for the "Lymphoma House" next? Caring for patients and helping them better return to work and life, what work can be further improved?

Mr.
Gu Hongfei: We have always advocated: "Only patients know best", encourage patients to communicate more and learn positive energy
from each other.
In the "Filterless Care Month" activity, experts and patients communicate directly and face-to-face online, which makes patients feel that they are highly valued by experts, not only gain knowledge, but also receive emotional support
.

At present, we have tried and explored in these aspects:

The first is the subdivision
of the patient group.
Because FL patients who are waiting for observation are completely different from
patients in the initial stage of treatment and patients who are refractory to relapse.
More refined grouping services and continuous optimization can help patient groups with different needs
.

The second is the dynamic observation
of the patient group.
The group administrator found that when the new concept of POD24 appeared, many patients expressed anxiety, so they immediately organized experts to communicate with patients on this new concept and answer questions
.

The third is to provide targeted disease management diaries, such as FL's "Filterless Diary"
.

The fourth is to support and train opinion leaders
in various patient groups.

Summary and message

Professor Zhang Huilai: Lymphoma is called a curable cancer, patients only need to actively cooperate and seriously follow the doctor's standardized treatment, I believe it is entirely possible to return to life, work, family and society
earlier.
The era of new drugs brings more treatment options to FL patients, and it is hoped that standardized treatment and new drugs will be available as soon as possible and continue to bring more gospel
to patients.

Professor Tao Rong: Doctors' care for FL patients is first reflected in standardized diagnosis and treatment
.
Careful patient follow-up has benefits for both the safety of treatment and the outcome of
survival.
The multi-dimensional interaction between patients and doctors, family members and patient groups and organizations contributes to the transmission of medical information, the satisfaction of diagnosis and treatment needs, the optimization of government decisions, and the decisions
of pharmaceutical companies.

Mr.
Gu Hongfei: This year's series of activities to care for patients in "Filterless Life" have received strong support from experts, which has greatly alleviated the anxiety
of patients with first diagnosis and recurrent FL.
Under the favorable situation of new drugs and new treatment plans, FL patients should adjust their mentality, actively cooperate with doctors to standardize diagnosis and treatment, and strive to achieve a "filter" and worry-free life!

Professor Zhang Huilai

Doctor of Oncology, Chief Physician, Doctoral Supervisor

Director of the Department of Lymphoma Internal Medicine, Cancer Hospital of Tianjin Medical University

Vice Chairman of the Lymphoma Professional Committee of the Chinese Anti-Cancer Association

Member of the Standing Committee of the Lymphoma Expert Committee of the Chinese Society of Clinical Oncology (CSCO).

Member of the Lymphoma Group of the Oncology Branch of the Chinese Medical Association

Vice Chairman of the Internal Oncology Branch of the Chinese Medical Promotion Association

Vice Chairman of the Lymphatic Disease Committee of the Chinese Medical Education Association

Vice Chairman of the Lymphoma Professional Committee of the Chinese Geriatric Health Care Association

Chairman of the Tumor Clinical Chemotherapy Committee of Tianjin Anti-Cancer Association

Vice Chairman of Tianjin Hematology Quality Control Center

Vice President of Hematologist Branch of Tianjin Medical Doctor Association

Professor Tao Rong

Ph.
D.
, Chief Physician

Director of the Department of Lymphoma, Fudan University Affiliated Cancer Hospital

Member of Shanghai Hematology Specialist Committee, Deputy Leader of Lymphoma Group

Member of hematology branch of Shanghai Medical Doctor Association

Member of the Hematology Branch of Shanghai Anti-Cancer Association

Member of Shanghai Clinical Research Ethics Committee

Standing Committee Member of Translational Medicine Special Committee of China Medical Education Association

Gu Hongfei

Founder of the House of Lymphoma

Vice Chairman of Guangzhou Red Cotton Tumor and Rare Disease Public Welfare Foundation

ESMO-Asia China Rare Tumor Liaison

Vice Chairman of the Cancer Prevention and Treatment Science Popularization Committee of the Chinese Anti-Cancer Association