Amyloidosis treatments result in causing various side effects and consecutively, they also cause alterations to the patient’s body. While the results of treatment show variations as per the individuals, sometimes the same treatment strategy used for a particular disease condition creates different effects. Hence, it is difficult for predicting the outcome and impact of a specific treatment on people. Therefore, coping-up strategies are adopted to mitigate the treatment’s side effects.
Open communication with the expert regarding new signs or symptoms experienced by the patients helps plan ways to manage and and additionally relieve these symptoms and side effects effectively. Moreover, the prescription of dietary therapy to minimize the impact of Amyloidosis on an individual’s body. The patients can seek professional therapies for mitigating the adverse emotional effects during Amyloidosis treatment. Several services and packages can help patients manage their treatment costs without much worry or tension. Above all, taking care of a person suffering from Amyloidosis is an important role for the caregiver.
Coping-up Strategies for Amyloidosis Treatment
Patients can feel anxious about treating a disorder like Amyloidosis, which is quite natural. While side effects – short term or long term are an inevitable part of such treatments, patients must know that managing and relieving symptoms and side effects is integral to the active treatment of Amyloidosis or any disease condition 1. The health care team will devise strategies to prevent and cure possible side effects of treatment, and hence, this is what is called supportive or palliative care. It is an essential, inevitable part of treatment, regardless of the amyloidosis type, disease gravity, patient’s age or gender.
Coping with the physical side effects of Amyloidosis treatment
Amyloidosis treatment can cause many physical side effects, while also bringing a range of changes to your body. The variations in a person’s physical health are influenced by factors like the type of Amyloidosis, its severity, treatment strategy used, the duration of treatment, and the patient’s overall health condition 2. Patients should talk with their healthcare team regularly regarding how they are feeling, while also making sure to let them know about any discomfort you are experiencing. Openly communicate any new signs or symptoms to your doctor when you start sharing them. The same applies to the case of any new or a change in existing side effects.
Talking with your doctor or healthcare team is vital, as only then they can plan ways to manage and relieve these symptoms and side effects effectively. Treating side effects and signs at the right time prevents the patient’s condition from worsening while simultaneously helping them lead a comfortable life. Please keep track of anybody changes or side effects that you experience, as it will help you explain the scenario more effortlessly to the health care team.
Physical side effects can be short term and long-term. Long term side effects or late effects can last for an extended period, even after the active treatment period. Treating these late effects forms a vital part of the survivorship care plan.
The doctor may prescribe a dietary therapy to minimize the impact of Amyloidosis on a particular body part. The doctor will recommend what all to consume and what not to. For instance, if Amyloidosis affects the kidneys or heart, the doctor may recommend a low-key sodium diet. Although amyloid is a protein, people should also note that there is no direct link between eating protein-rich foods and Amyloidosis.
Managing the barriers to treatment and care
Disease conditions can vary from one person to another. The outcomes of disease diagnosis and treatment can vary, hence, there is no necessity for cases of similar disease conditions to share similar features. Such differences and variations can be called “health disparities.” Many communities and groups are denied quality medical care in the real world. The groups negatively affected include poor people, racial and ethnic minorities, LGBTQ+ or sexual and gender minorities, older adults, adolescent and young adult populations, rural areas etc.
If you face difficulty accessing quality treatment and care, communicate the concern with your doctor or health care team. They will provide or help you with excellent services.
Coping with social and emotional effects of Amyloidosis treatment
Amyloidosis and its treatment can take a tremendous toll on a person’s physical and mental well-being. Patients may experience many social and emotional effects after being diagnosed with Amyloidosis. People will go through a lot of emotional mental turmoil. They will find it tedious to manage emotions like grief, sadness, anger, anxiety. They will find it difficult to calm their mind and manage their stress level. Often people find it difficult to express their feelings and emotions to their close ones, hence, in such cases, patients can seek professional therapies. Talking with a counsellor or oncology social worker can also help effectively cope with the emotional effects of Amyloidosis treatment.
Managing the costs of cancer care
Amyloidosis treatment can be financially straining. This thought can create a lot of stress and anxiety in the patients and their family members. For many people, finance stands as a hindrance in seeking better treatment.
Some patients find that they had a lot of unplanned, extra expenses concerning their treatment. And some people are forced to leave the treatment plan halfway because of being unable to manage the enormous cost. And such scenarios can have a very adverse impact on the patient’s health and life. Hence, patients are encouraged to talk about their financial troubles with a concerned health care team member. Today many services and packages can help patients manage their treatment costs without much worry or tension.
Role of Caregivers
Caregivers play a significant role in taking care of a person suffering from Amyloidosis. They usually include family and friends who stand by the patients from the beginning, i.e., from disease diagnosis treatment until post-treatment care (sometimes even after that).
These people have a range of responsibilities to manage and fulfil daily:
- Giving emotional and physical support to the patients. Encouraging them to do activities. Cheering them up.
- Communicate with the health care team. Caregivers are urged to accompany the patients during appointments and keep track of everything the doctor prescribes and advice.
- Giving food and medicines on time.
- Help patients cope with various symptoms and side effects of Amyloidosis treatment.
- They should coordinate the patient’s appointments with the health care team.
- Managing the transport of the patient for appointments.
- Handling financial aspects like bills and insurance.
- Helping the patient with household chores and other daily activities.
Communication with the health care team regarding side effects
Open conversations with the doctor are essential in treating Amyloidosis or other disease conditions. Patients are encouraged to ask questions to the health care team or doctor regarding the side effects of treatment. They can ask:
- What are the probable side effects of the treatment?
- Explain the short term and long-term side effects?
- When are these side effects likely to happen, and for how long?
- How can we prevent, manage and relieve them?
Be sure to communicate any change that you are experiencing. Patients should care to express even the tiniest effects or feelings that they are experiencing to the healthcare team.
Seek their help to create a caregiving plan. Enquire how much care and support (physical, mental) you will require at home. Don’t hesitate to ask anything that comes to your mind regarding treatment, side effects or post-treatment care.
- 1.Arenaza-Urquijo EM, Przybelski SA, Machulda MM, et al. Better stress coping associated with lower tau in amyloid-positive cognitively unimpaired older adults. Neurology. Published online January 21, 2020:e1571-e1579. doi:10.1212/wnl.0000000000008979
- 2.Al Hamed R, Bazarbachi AH, Bazarbachi A, Malard F, Harousseau JL, Mohty M. Comprehensive Review of AL amyloidosis: some practical recommendations. Blood Cancer J. Published online May 2021. doi:10.1038/s41408-021-00486-4