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Tips & Recipes for Healthy Eating with Amyloidosis

Are you wondering what diet to follow after a diagnosis of AL Amyloidosis? With so many unknowns and what-ifs, it is a scary and overwhelming time. Guest writer Lori Grover, herself an Amyloidosis survivor, provides helpful insights into healthy eating.

So much is out of your hands as you wait for test results and treatment options. I was terrified when I received my diagnosis five years ago. I found focusing on the things I could control (like following doctors’ orders, taking medications on time, reducing stress, and eating a clean diet) gave me back a small sense of power over my life.

I recently had the privilege of chatting about diet and Amyloidosis with Julieann Ray Cheng, a fellow Amyloidosis warrior, dietician, and author of soon-to-be-published “The Delightful Dietician” cookbook, who offered specific guidance, tips, and recipes to help manage the disease.

While there is no diet specific to AL Amyloidosis, Julieann recommends following a healthy diet to help you stay as strong as possible while you face treatment.

 

5 Tips for Healthy Eating: Variety is Key!

The following suggestions are based on the Dietary Guidelines for Americans 2020-2025.

1. Include all the food groups: vegetables, fruit, protein foods, dairy, and fat.

2. Colour your plate. Be sure to include various fruits and vegetables to get all the vitamins, minerals, nutrients and antioxidants you need.

3. Customize your diet according to any specific restrictions given by your physician. Your doctors may tell you to avoid certain foods that can interact with your medications. If you have kidney involvement, you may also have to closely monitor electrolytes and minerals such as sodium, potassium, and calcium. As this will differ for every patient, be sure to follow your doctor’s recommendations closely.

4. Be prepared to battle nausea as chemotherapy may upset your stomach. On days when you receive treatment, you may not feel like eating much. Eat small meals, and prep for the days you don’t feel well. Have healthy foods on hand, like homemade soups in the freezer, for quick and easy meals.

5. Watch your fluids. Keep a bottle of fresh water with you and frequently sip to avoid dehydration and dry mouth. If you suffer from edema, your doctor may give you specific directions about how much fluid you can consume daily.

 

Foods to Avoid when you have Amyloidosis

Watch out for sodium.  A healthy diet when you have Amyloidosis includes no more than 2300 mg of sodium per day (certain disease conditions like heart failure and kidney disease may recommend 1500 mg of sodium or less per day). Many foods contain surprisingly high amounts of sodium, so keep an eye on the labels. Choose fresh, frozen, and no-salt-added canned fruits and vegetables. Stay away from processed foods, the salt shaker, spice blends or soup bases that contain salt.

Speak with your doctor before consuming alcohol. The current recommendation is two alcoholic beverages per day for men and one alcoholic beverage for women.  However, if you take regular medications,  it is best to avoid daily consumption of alcohol because it can place additional stress on the liver. Alcohol contains a significant amount of calories and is not essential to a healthy diet. It’s best to avoid or limit alcohol to special occasions.

Limit added sugar to 10 percent of your daily calories (200 calories or 50 grams of added sugars based on a 2000 calorie diet). Watch out for beverages like soda, coffee with added syrups, and sugary juices. A better choice is water with lemon or other fresh or frozen fruit to provide flavour. Foods that contain added sugars include breakfast cereals and bars, candy, high-fat milk and yogurt, desserts, and sweet snacks.  Consider fresh or canned fruit to satisfy your sweet tooth and provide your body with essential vitamins, minerals, and fibre.

Limit saturated fat to 10 percent of daily calories (200 calories or 22.2 grams of saturated fat based on a 2000 calorie diet). Fried foods, high-fat meats, whole-fat dairy, ice cream, coconut or palm oils, and butter contain saturated fat. Skip these whenever possible and choose healthy fat instead. Baking or roast foods, choose lean cuts of meat and remove the skin, and use olive, canola, sunflower, safflower, or soybean oil in place of butter, coconut or palm oil.

 

How Does Your Diet Rate?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The most important part of sticking to a healthy diet when you have Amyloidosis is to enjoy your food while you nourish your body. Making necessary adjustments will have an enormous impact on your overall health.

If you feel overwhelmed, consider making one change at a time and adapting the transition to your lifestyle. Most changes will set in and feel like your new normal after about three weeks. Look at each day as an opportunity to nourish your body with healthy foods.

Make the right choices, and your body will thank you! For more tips on implementing these healthy changes check out our posts Amyloidosis and Diet or our Treatment Survival Guide.

Finally, Julieann has graciously provided two delicious healthy recipes from her upcoming cookbook that she routinely prepares as she manages her amyloidosis diet.

Enjoy!

 

Lori Grover is a guest blogger for Mackenzie’s Mission. She was diagnosed with AL Amyloidosis in 2016 and writes to share experiences and lessons learned during her journey.  More wonderful blogs by Lori can be found on her page Amyloid Assassin.  Lori is a freelance copywriter, and a mom of two wonderful boys. She loves writing, reading, and all things crafty.

Julieann Ray Cheng is an Ohio-based dietician who was diagnosed with AL Amyloidosis in 2018. When not in the kitchen, she loves to travel with her family and shop for goodies. Keep an eye out for her cookbook “The Delightful Dietician,” available in the fall of 2021. 

 

Easy Vegetable Soup  (Servings:  6 – 10 oz bowls)

1 small onion, diced

2 teaspoons of olive oil or oil of your choice

4 stocks of celery, diced

2 potatoes, diced or 1 c small pasta noodles (if reducing potassium)

1 pound frozen mixed vegetables (carrots, corn, green beans, peas)

14.5 oz canned tomatoes, diced (may use low sodium or no added salt)

6 cups vegetable broth (may use low sodium or no added salt broth)

1 teaspoon garlic powder

½ teaspoon white or black pepper

In a medium saucepan add olive oil, diced onions, diced celery. Sautee on medium heat for 5 minutes.

Add vegetable broth, mixed vegetables, diced potatoes, garlic powder, and white or black pepper.

Bring to a boil and simmer for 15 – 20 minutes uncovered.

***If reducing the potassium omit the diced potatoes and diced tomatoes, add 1 cup small pasta noodles, ½ pound of mixed vegetables, and 2 cups vegetable broth.

By:  Julieann Ray Cheng, The Delightful Dietitian

 

Color Your Plate Chicken Sheet Pan Dinner  (Servings:  4)

4 chicken breasts

1 teaspoon garlic powder

1 teaspoon onion powder

½ teaspoon black or white pepper

1 teaspoon Rosemary

2 diced sweet potatoes, or 6 diced carrots (if potassium restriction is needed)

1 pound frozen tricolor peppers and onion blend

1 pound fresh or frozen broccoli or brussels sprouts

1 garlic clove, minced

2 tablespoons oil

Pre-heat oven to 400 degrees F.

Line a sheet pan with parchment paper for easy cleaning.  Spray with cooking oil.

Season chicken breast with garlic powder, onion powder, black or white pepper, and Rosemary.  Place on one side of the sheet pan.  Add diced sweet potatoes on the other side of the sheet pan.  Bake at 400 degrees for 30 minutes.

While the chicken breast and sweet potatoes are baking.  In a bowl add frozen tricolor peppers and onion blend, broccoli or brussels sprouts, garlic, and oil.

Remove pan from oven.  Add vegetable mixture to the sweet potatoes and toss.  Place back in the oven for an additional 25-30 minutes until the chicken reaches an internal temperature of 165 degrees F.

Remove from oven and allow to rest for 5 minutes before serving.

**If the chicken breast is cooked with skin, Place under broiler for 4-5 minutes to crisp the skin of the chicken and vegetables at the end of cooking time.

***If sweet potatoes are omitted, add carrots with other vegetables during the second half of cooking.

By:  Julieann Ray Cheng, The Delightful Dietitian

Amyloidosis: The Road to Diagnosis

As a rare disease with a wide range of symptoms, Amyloidosis can be difficult for doctors to recognize. The disease presents itself differently depending on the type of Amyloidosis and which organs are affected. Delays in diagnosis are common, and some suffer for years while seeking answers. As a result, the road to diagnosis is often too long and winding, resulting in serious consequences for patients.

According to a survey of 575 patients conducted by Mackenzie’s Mission in 2019, over 60% of patients surveyed saw between two and four doctors before receiving a diagnosis, and another 24% saw five or more.

 

 

 

 

 

 

 

 

 

We reached out to our Amyloidosis community and asked them to share their road to diagnosis. Hear from Lisa, Len, Jan, Janet, and Laura, as they share their unique symptoms and struggles in receiving their Amyloidosis diagnosis.

 

Lisa

Lisa was diagnosed with Tracheobronchial Amyloidosis in 2011. She was 41 years old and had only 39% lung function. After working as a first responder for ASPCA in post-Katrina New Orleans, Lisa began having breathing problems. She assumed it was a reaction to the dust and debris she was exposed to in the hurricane zone.

In 2006 she was diagnosed as being severely asthmatic and was treated with inhalers and nebulizers. None of the treatments improved her symptoms and caused multiple side effects, including manic episodes and weight gain. Her health continued to decline.

Now unable to work due to her breathing problems, Lisa moved back home with her elderly mother in New York. She continued to seek treatment while rapidly losing lung function.

Finally, in 2011, she once again switched pulmonologists in her search for answers. Lisa’s new doctor took her off the steroids and did a bronchoscopy. They found a 2cm mass in her trachea, a mass so big it prevented the scope from going into her lungs. A biopsy, including congo red stain, revealed a diagnosis of Amyloidosis. Lisa’s was the first case of Tracheobronchial Amyloidosis diagnosed at the Albany Medical Centre in New York.

Thankfully, Lisa’s pulmonologist referred her to Dr.Berk at the Boston Medical Centre. After treatment with low dose radiation and chemotherapy, including Velcade, she has been steady since 2014.

Lisa, at the age of 49, is now reliant on a scooter to get around and is on oxygen 24/7. Despite her battles, she has a beautiful attitude towards life, facing her troubles with grace and bravery. In Lisa’s words: “Life is always an adventure, right?”

 

Len

Len suffered from symptoms for two years before receiving a diagnosis in 2012. After not feeling well, he visited a naturopath who helped alleviate some of his symptoms. He was having issues with his heart, and blood work showed a problem with his kidneys.

He was sent to a kidney specialist who ordered a biopsy. Within 24 hours he was given a diagnosis of Amyloidosis, with further testing showing it was AL. A bone marrow biopsy was also performed to rule out the possibility of multiple myeloma.

Thankfully, Len was admitted into a trial and received chemotherapy with melphalan, dexamethasone, and antibiotics. Within six months, he was in full remission!

Len has a great sense of humor and continues to spend time enjoying the things he loves. In Len’s words, “We power on as life can be short.”

 

Jan

Jan was diagnosed with AL Amyloidosis affecting her heart, skin, autonomic and peripheral nervous systems in 2009 at the Mayo Clinic in Rochester, MN. She visited Mayo after suffering from symptoms for over six years and was diagnosed within days.

Early symptoms included swelling, trouble walking, difficulty swallowing, tingling and numbness. According to Jan, some days, “it felt like her legs didn’t respond to her intentions for them to move.”

As her symptoms progressed, Jan had problems chewing and struggled to even open her mouth wide enough to eat. She was out of breath and lightheaded when standing, sometimes accompanied by lower chest pain. Jan suffered from severe fatigue and some days was unable to move her legs or lift her arms. Everyday activities required extreme concentration. Other symptoms included thinning hair, brittle fingernails, and stiff, painful hands.

She suffered from these symptoms for six years.  She faced x-rays, ultrasounds, MRI’s, CT scans, a stress test, an angiogram, an echocardiogram, and a pulmonary function test. As her health continued to decline, Jan’s doctor assured her things were normal and that she had the heart of a twenty-year-old.  Despite her doctor discouraging her, she decided to head to the Mayo Clinic.

Thank goodness she pushed through and advocated for herself! After four days of testing at Mayo, she was diagnosed with Amyloidosis.  In 2009, she had a partial response to her stem cell transplant. Two years later, after doctors discovered a blockage, she received a pacemaker.

In 2016, her light chains rose high enough that she needed another stem cell transplant. This time it was exceptionally difficult on her body. But after many issues and a lengthy hospitalization, Jan had a complete response. She is still in hematological remission today!

Although she still suffers from symptoms due to damage done to her heart, she is doing her best to lead a full life and is now “feeling back to her new normal.”

 

Janet  (not her real name – the patient asked to remain anonymous)

Janet received a diagnosis of Amyloidosis in June 2019, primarily affecting her kidneys and neurological system.

Her early symptoms included a lack of appetite, problems with bowel movements and sudden weight loss of 30 pounds. As her symptoms progressed, Janet suffered from low blood pressure and dizzy bouts and eventually would pass out upon standing. She had a tingling sensation between her toes, which progressed to constant, excruciating pain on the bottom of her feet.

Throughout the two years she searched for answers Janet visited many specialists. She had a colonoscopy, cardiac catherization, NCV, EMG, adrenal gland imaging, total body x-ray, blood tests, cardiac stress tests, heart monitor, skin biopsy, bone marrow biopsy, and a kidney biopsy.

Janet was dismissed at emergency rooms, with doctors saying her symptoms were either related to orthostatic hypotension or nothing.

She was misdiagnosed with MGUS and was being monitored by a hematologist because she had the markers for Multiple Myeloma.

As her symptoms continued to worsen, she visited her primary care physician who ordered a 24-hour urine sample. Janet was immediately sent to the emergency room when the results showed high amounts of protein in her urine. A kidney biopsy was performed and showed a diagnosis of Amyloidosis.

After facing CyBorD treatment, Janet is now on maintenance. Her neurological pain and weakness has worsened, and she is now using a walker.

She is too weak to be eligible for a stem cell transplant, but in Janet’s words “I’m hoping when I go back in June that this may change. Fingers crossed!”

 

Laura

Laura was diagnosed with AL Amyloidosis in the spring of 2018, at the age of 45. Her initial symptom was a chronic cough, which began six months earlier.  Diagnosed with asthma, Laura was treated with inhalers, nebulizers and steroids. The medications did nothing to improve her symptoms. As these issues continued, new problems emerged. Edema in her legs and ankles and an elevated BNP prompted her doctor to refer her to a cardiologist.

He tested and pursued answers until a diagnosis of Amyloidosis was confirmed. Because the Amyloidosis affects her heart, she has had an EKG, echocardiograms, a cardiac MRI, and a heart biopsy.

Laura’s last treatment was in October 2019. She is now monitored to ensure her levels remain normal. In Laura’s words: “I feel good most days. I know God is in control, so I try not to get too worked up.”

 

Conclusion

Amyloidosis presents itself in different ways with varying symptoms for each patient. Because of these differences, doctors often struggle to find an answer. If you are sick and searching for a diagnosis, please don’t give up. Follow your instincts, switch doctors, get second opinions, and keep going until you find out what is happening.

During my search, I was told it was anxiety and that my symptoms were all in my head. They were NOT. I was made to feel like I was irritating my doctor with my repeat visits. I was embarrassed and made to feel like I was too weak to handle life, that I was seeking attention, and exaggerating my symptoms. None of this was true.

I was sick and I needed help. I remember sitting in the parking lot of the hospital, too embarrassed to go in because I didn’t want to be dismissed and made to feel like I was crazy. So, I sat. I sat in that parking lot and cried because I couldn’t find someone who would help me.

Soon after, I realized that this is MY LIFE and other people’s opinions of me didn’t matter. In my gut I knew I was sick.  I went back to doctors, and clinics and the ER again and again and again and I demanded answers. Until one day, a wonderful hematologist said to me, “It is obvious that you are very sick.”

And with that statement I felt relief. You’d think my first instinct would be fear, but I felt relieved. Because I finally found someone who believed me. And I feel in my heart that this beautiful lady saved my life. I will be forever grateful to her.

If this resonates with you, your answers are out there too. Keep searching.

 

We are thankful to our fellow Amyloidosis patients for sharing their stories with us. Knowing that you are not alone can be an extraordinary help when faced with a scary diagnosis. If you or a loved one has been recently diagnosed with Amyloidosis, reach out to find support in those who genuinely understand your battles. It can make all the difference.

 

 

Lori Grover is a guest blogger for Mackenzie’s Mission. She was diagnosed with AL Amyloidosis in 2016 and writes to share experiences and lessons learned during her journey.  More wonderful blogs by Lori can be found on her page Amyloid Assassin.  Lori is a freelance copywriter, and a mom of two wonderful boys. She loves writing, reading, and all things crafty. 

Amyloidosis and Diet

While there is no special diet that will cure or treat Amyloidosis, both healthy eating and following doctor-recommended restrictions are essential. Guest blogger Lori Grover offers some tips on dealing with dietary changes.

 

According to Myeloma UK, eating a healthy diet increases energy levels, maintains muscle strength,  boosts your immune system and helps recovery after treatment. As you can see, making healthy choices makes sense. But easier said than done, right? Eating a healthy, balanced diet can be tricky for anyone. When your stress levels are high, and you feel horrible, making those necessary changes can be daunting. Because the disease affects everyone differently, your unique situation will determine the dietary suggestions that are made for you.

AL Amyloidosis can impact diet in a few ways.

  • Specific recommendations may be made as part of a plan to manage heart and kidney disease to prevent any further damage to organs
  • If kidneys are affected additional suggestions may be made to keep electrolytes in balance (especially if Dialysis is involved)
  • A low sodium diet and fluid restrictions may be suggested to combat edema
  • Certain foods or dietary supplements may be restricted because they interfere with medications
  • Dietary changes may be recommended to help deal with nausea, constipation, or diarrhea
  • A ‘clean diet’ may be advised if your white cell count is low (Avoidance of high-risk foods such as raw eggs, or shellfish)

 

Facing these dietary changes isn’t easy. Here are a few tips to ease the transition.

  • Look at it as a challenge.  Use it as an opportunity to try new foods, test out different cooking methods, and experiment with healthy recipes. Keep an open mind and try new things.
  • Focus on the foods you CAN eat rather than on the foods you can’t. Doctors and dieticians tend to give you lists of the foods you can no longer enjoy. While necessary, focusing on the things you can’t have can be depressing and overwhelming. Try to shift your focus and make a list of all safe foods and meals you can continue to enjoy. Having a go-to list on hand is useful when you’re feeling overwhelmed.
  • Create a collection of your favorite healthy recipes and try some new ones. Helpful websites to check out are Davita, Heart Foundation, and The Heart and Stroke Foundation. Experiment with new recipes and keep an open mind. If one fails, try, try again.
  • Meal plan, prep, and batch cook. Having ideas on hand makes mealtime easier. Some days you’ll have more energy than others. On those days, make extra and freeze and prep for other meals, so things will be all set for you when you’re feeling low.
  • Eat frequent, small meals throughout the day. Not only can it help if you’re feeling nauseous, but it also keeps you full and helps to avoid cravings. If you wait until you’re starving to eat, you’ll be more inclined to make bad decisions.

 

A low sodium diet may be recommended for both kidney and heart health.

Excess sodium in your diet contributes to fluid retention. Symptoms are swelling, puffiness, a rise in blood pressure, and shortness of breath (due to fluid around the lungs and/or heart).

The National Kidney Foundation recommends a maximum of 2300 mg of sodium per day and your doctor may recommend even less.

A balance must be struck to achieve an optimal sodium level for you, so follow your doctor’s recommendations carefully.  Limiting salt can be challenging, especially in the beginning, as your taste buds adjust. Keep at it and don’t give up…it will become your new normal.

 

Tips on dealing with a low sodium diet.

  • Avoid processed foods as much as possible. Read labels and choose lower-sodium varieties.
  • Eat whole foods and cook from scratch. Although it is more time consuming, cooking from scratch allows you to control the amount of salt.
  • Experiment with different spices and herbs to add flavour to your foods.
  • Add an acid when cooking, like a squeeze of lemon juice or vinegar to brighten flavours.
  • Pay attention to sauces, gravies, and salad dressings as they can contain a surprising amount of sodium
  • If potassium levels are a concern for you, be cautious with salt substitutes

 

A fluid-restricted diet may be advised to combat edema.

A common and severe side effect of AL Amyloidosis is fluid overload. This happens when you’re taking in more fluid than your kidneys can remove. A balance of restricting sodium and fluid, paired with diuretic medications, can help keep your fluid levels in check. In most cases, between 1.5-2 litres/ day of fluid is recommended.

Tips on dealing with fluid restriction

  • Fill a water bottle in the morning, and drink from it throughout the day to help you keep track of your water intake.
  • Keep a log (at least at the beginning) until you get an idea of how much fluid you are taking in, and don’t forget to include things like jello, watery fruit, and ice cream.
  • Plan to spread the fluid you drink throughout the day.
  • If dry mouth is a problem, ice chips, hard candies, and mouth rinses or sprays can help.

 

A low protein diet may be suggested to protect kidney health.

The goal is to strike a balance. While protein is necessary for growth and repair of your body, foods high in protein can add to the workload of the kidneys. When protein is digested, a waste product called urea is produced. If your kidneys are not functioning correctly, urea can build up in your bloodstream and cause further complications. For this reason, your doctor may suggest you limit your high protein foods.

Tips on dealing with a low protein diet:

  • Adjust the ratio of protein to vegetables in your recipes. Add more vegetables and starches to dishes such as soups and stews, to stretch it out and make it seem more substantial.
  • Think of vegetables and grains as the main dish, and protein as your side dish
  • Experiment with different types of protein, including plant-based options
  • Start a ‘meatless Monday’ as part of your routine, to test out vegetarian options

 

Specific foods and supplements may be limited.

  • You may have to cut out certain foods or supplements if they interact with the medications you are taking. For example, green tea and high dose Vitamin C can interfere with Bortezomib (Velcade) and make it less effective. Your doctor will give you a list of foods and supplements to avoid. Follow the recommendations carefully, and be sure to check with your medical team before adding any over the counter medications or supplements to your diet.
  • If your kidneys are affected, your levels of electrolytes and minerals will be closely monitored. Your kidney care team will make recommendations based on your levels. For example, you may have to avoid high potassium foods or those with high calcium levels.

 

There is no one size fits all diet for AL Amyloidosis. What is best for you will be decided based on your unique situation. Experts do agree that healthy eating has many benefits. And when you’re already facing so much, you want to do whatever you can to be your healthiest self.

The best take away tip I can give you is to keep an open mind and be ready to experiment. As you try new things and choose healthier options, you will adjust, and healthy eating will be your new normal.

For more tips on implementing these healthy changes check out our posts Tips & Recipes for Healthy Eating with Amyloidosis or our Treatment Survival Guide.

 

Resources

Myeloma UK handout                                                        The Heart Foundation

National Kidney Foundation

Heart and Stroke Foundation

Amyloidosis Foundation

Ted Rogers Heart Function

 

Lori Grover is a guest blogger for Mackenzie’s Mission. She was diagnosed with AL Amyloidosis in 2016 and writes to share experiences and lessons learned during her journey.  More wonderful blogs by Lori can be found on her page Amyloid Assassin.  Lori is a freelance copywriter, and a mom of two wonderful boys. She loves writing, reading, and all things crafty.

Support Groups: Can They Play A Role In Your Treatment?

Have you recently been diagnosed with Amyloidosis? Wondering if joining a support group, whether online or in person, would be right for you?

When I was diagnosed with AL Amyloidosis, I thought that it wouldn’t be for me. It took me over a year to join. I had a picture in my mind of what it would be like. I envisioned a group of people gathered together to complain about how sick they were. I was afraid to get a glimpse of my future. I pictured a giant pity party.

What I experienced was extremely different. These groups are full of survivors! They are handling this disease with the most positive attitude possible and are making the best of the hand they have been dealt. I have learned so much from these people.

In these groups, you will find people who have been where you are, recently diagnosed, scared, and overwhelmed. You will find people willing to share the tips and tricks that helped them face some of their darkest moments and most difficult times. You will find people to help support and encourage you through your journey.

To find out more about the role of the support group, I reached out to Muriel Finkel from the Amyloidosis Support Groups (ASG) and Marsha McWhinnie from the Canadian Amyloidosis Support Network (CASN).

 

WHO IS THE SUPPORT GROUP FOR?

Support groups are for patients with all types of Amyloidosis and their caregivers. Their websites are full of information and resources. Online support groups such as the Amyloidosis Support Groups on Facebook, CASN, Smart Patients, and One Amyloidosis Voice are private and require access permission by the administrators. Such security for access offers comfort for the participants to reveal more personal information. In person support groups provided by Amyloidosis Support Groups, CASN, and the Amyloidosis Foundation, offer additional services and support for patients, as well as access to expert medical professionals.

 

WHAT IS THE GOAL OF THE SUPPORT GROUP?

Support groups, in general, are concerned with awareness and education. Their goal is to educate and empower patients, promote awareness, support medical research, and to improve the quality of life for those with Amyloidosis.

 

WHAT SERVICES DO SUPPORT GROUPS PROVIDE?

  • Both ASG and CASN operate a toll – free number, the primary goal of which is to provide a compassionate, understanding ear to those recently diagnosed. If you have received this life-altering and scary diagnosis, this call can let you know you are not alone and that there is hope.
  • Their websites provide educational videos and articles, medical referrals, patient stories, links to Amyloidosis support resources, and lists of upcoming meetings.
  • Both groups host support group meetings, which provide an opportunity to meet other patients and caregivers. During these meetings, an Amyloidosis expert presents, and there is an opportunity to ask questions and share your story. The ASG hosts meetings throughout the United States and the CASN has meetings in Toronto and Quebec.
  • The Amyloidosis Support Group also holds a special meeting for ATTR in Chicago every two years, with the top experts in the country participating and presenting.
  • ASG sponsors multiple groups on Facebook so patients and caregivers can chat with each other, share stories, and ask questions. These groups are mediated by wonderful volunteers who are up to date with the latest treatments and advances in the field, with assistance from medical advisors. The groups on social media allow patients from all over the world to connect.
  • Smart Patients is an online forum with conversations among the amyloidosis community, with topics ranging the full gamut from symptoms to treatment.
  • A new online community was recently launched called ‘One Amyloidosis Voice,’ which has a message board, social wall, trusted resources, a news and meetings section, and a diagnosis educator.
  • Through online forums and participation in local events, Support Group administrators and volunteers spread the word about Amyloidosis, with the goal of increased awareness.
  • Both groups are interested in supporting medical research by sharing information about clinical trials with patients. Pharmaceutical reps are sometimes present at meetings to answer questions, and to help connect patients with trials that might be right for them.

 

WHAT A TYPICAL SUPPORT GROUP MEETING LOOKS LIKE

Although each meeting varies and ends up with a flow of its own, administrators do follow a basic outline which includes the following:

  • New Business – A discussion of what is new in the field of Amyloidosis and what the Support Group has been working on
  • Guest Speaker – An interactive presentation from an Amyloidosis expert (usually a doctor or other medical professional)
  • Question and Answer Period – Questions are encouraged, and one on one time with the presenter may be possible
  • Meal or snack is provided (depending on the timing of the meeting)

The atmosphere is laid back and comfortable, and patient confidentiality is paramount. It is absolutely your choice as to whether you share your story and ask questions.

 

BENEFITS OF THE SUPPORT GROUP

  • You hear inspiring stories which can provide comfort and hope for the future.
  • You are kept up to date with the treatments, clinical trials, and medical breakthroughs.
  • You can share your story with people who genuinely get it.
  • You can ask for help if you have questions. Facing symptoms and looking for relief? Concerned about a new symptom or side effect? Chances are there is someone in the support group who has faced it and can offer help and support.
  • You can find information on what to expect from treatment. There are people in these groups who have endured stem cell transplants, chemotherapy, and have participated in clinical trials. In some cases, patients have tried various types of treatments and can offer suggestions of what to expect, and how to deal with side effects.
  • You can also find information on the leading Amyloidosis Specialists and Centres of Excellence. Because Amyloidosis is such a rare disease, it is vital to get the experts on your team.
  • Need to vent? We do that too. Sometimes it just becomes too much. The weight of it all hits and you feel overwhelmed and lost. There’s someone here who can provide a listening ear.

I am so glad that I decided to join these support groups. Not only do I get to hear the inspiring stories of those who are making life happen despite the challenges they face, but I have learned SO MUCH.  Amyloidosis patients who have been living with this disease for years have a wealth of information. The administrators of the groups are also up to date with current treatments, clinical trials, and medical breakthroughs happening in the field of Amyloidosis.

I have met people whose advice has helped me through challenging times. There is something special about talking with someone who has been where you are now. Someone who has received the same diagnosis and faced the same overwhelming feelings of fear and uncertainty. To know that others have been where you are and have come out the other side is comforting and inspiring.

Thanks to these support groups I know I am never alone.

 

 

How to contact a support group near you

Amyloidosis Support Group

http://www.amyloidosissupport.org/

1-866-404-7539

Canadian Amyloidosis Support Network

http://thecasn.org/

1-877-303-4999

Amyloidosis Foundation

http://amyloidosis.org/resources/#websites-and-support-groups

One Amyloidosis Voice

https://www.oneamyloidosisvoice.com/

Smart Patients

https://www.smartpatients.com/

 

Lori Grover is a guest blogger for Mackenzie’s Mission. She was diagnosed with AL Amyloidosis in 2016 and writes to share experiences and lessons learned during her journey.  More wonderful blogs by Lori can be found on her page Amyloid Assassin.  When not writing, she is mostly a stay at home mom, florist, crafter, lover of books and food. Enjoy!

 

Amyloidosis By The Numbers

As a member of the amyloidosis community, we consistently engage in conversations with patients across a variety of forums. One constant among these patients is a desire for more knowledge. We want to learn about symptoms, treatments, and how we are all impacted by this disease. To get some answers, Mackenzie’s Mission created a series of online questions. We heard from 575 respondents. Here are their answers.  Disclaimer: we are simply reporting the data as submitted.

 

In response to what is your current age today, the range was between 20 and 89, with 92.6% falling between the age of 40 and 79, and 83% falling between the age of 50 and 79.

 

 

In response to what was your age at time of diagnosis, the range was between 10 and 89, with 91% falling between the age of 40 and 79, and 63.8% falling between the age of 50 and 69.

 

 

The gender of respondents was somewhat balanced, with 54.5% female and 45.5% male.

 

 

The respondents currently live in 25 countries/areas around the globe, with 82.09% from the United States.

 

 

The types of amyloidosis were also diverse, including Primary/AL, hATTR, ATTRwt, Localized, and Secondary/AA.  About 3% of the respondents were types outside of these, or unknown.

 

 

When asked about the number of organs affected, the majority at 56.5% had two or more, followed by 36.7% with one organ involved. A small 6.8% had no organ involvement.

 

 

Next, we asked the respondents for specifics as to which organs had been affected by the disease. The heart and kidney were the most common, with the GI Tract and Nervous System coming in similarly at third and fourth. Fewer respondents listed problems with the liver, lungs, spleen and larynx. In addition, there was a surprisingly long list of other involvements filled in, each receiving just one tally.

 

 

The next four questions focused on the specialty of doctors that patients had visited, and the time to diagnosis.  We first asked how many doctors each respondent saw before getting a diagnosis. It is interesting to see how evenly it is spread across the selections.

 

 

We then wanted to know where their journey began. What was the specialty of the first doctor the respondent visited?  It was not a surprise that the majority of responses, at 53.9%, named their PCP/Internal Medicine as their first stop.

 

 

The next question was to determine what type of doctor made the amyloidosis diagnosis. The data seems to indicate that while PCP/Internal Medicine was the first point of inquiry at 53.9%, they arrived at a diagnosis only 1.9% of the time. Thus, referrals to specialists were key to getting a diagnosis, with nephrologists, hematologists/oncologists, and cardiologists the front runners at an aggregate of 72.9%. Having said that, per the earlier chart, it took many specialists to arrive at the answer.

 

 

Next, we wanted to know how long it took to get a diagnosis. We were surprised to learn that 50% of respondents said they received a diagnosis within the first six months, especially given the number of doctors visited to arrive at the diagnosis.

 

 

We then asked respondents to list all symptoms they experienced. The dominant symptoms were fatigue and shortness of breath – 64.2% and 53.7% respectively. The “Other” category came in strong at 22.4%, with an extremely long and diverse list of additional symptoms (too many to mention here). It does seem appropriate to observe that the diversity of symptoms reflects the complexity of this disease.

 

 

We wanted to better understand how long patients experienced symptoms before they sought medical attention (this is of course with the benefit of 20/20 hindsight). Some 37.6% of respondents sought treatment early, waiting six months or less. However, nearly half — approximately 46% — experienced symptoms anywhere from six months to three years before their first doctors visit.

 

 

We asked respondents the types of treatments they had undergone since diagnosis. A significant 77.8% had various types of drug therapy and 37% received a stem cell transplant. A number of the patients having a stem cell transplant also had drug therapies, so these responses are not exclusive of one another.

 

 

For those who underwent a stem cell transplant, we wanted to understand whether the procedure was done as an inpatient, an outpatient, or as a combination. The majority at 68.5%, for a variety of reasons, were inpatient.

 

 

Our next category of questions focused on clinical trials.  Of our 575 respondents, roughly one-quarter have participated in a clinical trial.

 

 

We asked those who participated in a clinical trial which one they were in. You can see below the distribution for the ATTR trials. We did ask a separate question regarding the AL-focused trials, however the data proved to be questionable and thus it was excluded from this recap.

 

 

The next question was aimed at the 77% who indicated they did not participate in a clinical trial, seeking to understand why not.  Striking was the number of respondents who declined, for whatever reason, to answer.

 

 

In the next question we asked respondents to provide some insight into how they rated their ability to tolerate treatment, whatever that may be. It was spread out, perhaps due to a wide range of treatments.

 

 

We then asked patients to assess their quality of life before and after treatment. For those that responded, the majority indicated at least a moderate improvement.

 

 

In our next-to-last question we asked the current state of their disease.

 

 

The final question was open-ended, where we asked respondents to complete the following sentence: “With hindsight, I would have appreciated knowing about …”  We received a massive number of responses, and in our desire to give everyone their full and unedited voice, we invite you to read through the many heartfelt and authentic voices (listed in the order received).   “With hindsight, I would have appreciated knowing about …”

 

 

CLOSING THOUGHTS

 

The responses we got from this study reinforce the complexity and diversity of amyloidosis. To each member of this community who stepped forward to answer the questions, we thank you. Gathering information, spreading awareness, and pushing for change leads us on the path to earlier diagnosis and an increase in life-saving research.

 

One repeating point people mentioned in the last question was a need for more information for doctors and members of the medical community, and for patients and caregivers who are dealing with this disease. If we continue to reach out to doctors, they will recognize the symptoms of amyloidosis and will think to test for it, leading to earlier diagnosis. If we continue to provide patients and caregivers with the most up to date information on treatments, resources, and where they can go for support, we can help arm those who are newly diagnosed. In this way, the sharing of information can be one of our most valuable tools.

 

Fight on, amyloidosis warriors. Fight on.

 

Treatment Survival Guide for AL Amyloidosis

The treatment for AL Amyloidosis varies and can include chemotherapy, a stem cell transplant, or immunotherapy. Each of these treatments comes with its own set of issues and side effects. If you are newly diagnosed and just beginning one of these treatments, it can be a scary and difficult time. The uncertainty of it all can be overwhelming. If you’re worried about what you’re about to face, here are some tips and tricks from patients who have been there. Hopefully, this treatment survival guide can help make the whole process just a little bit easier for you.

Preparing for treatment and having a plan in place (even if things don’t go according to that plan) can help the whole process go a little bit more smoothly. Having an idea of what to expect in terms of side effects helps you recognize and treat them immediately. Learning how to deal with the mental stresses can be as important as dealing with physical stressors. And living your healthiest lifestyle can help make the treatment as successful as possible.

 

Preparing for treatment

  • Ask your medical care team about what side effects you can expect, and what medications you can use to control them (such as anti-nausea medication, or mouthwash for mouth sores). Having a plan in place means you can treat symptoms early; knowing what to expect will lessen the shock of facing these side effects.
  • Create a support system: family, friends, doctors, homecare, neighbors, join a support group. This is a time to ask for help.
  • Make a list of things that family and friends can do to help you out. They can be a great supportive resource but often don’t know what to do. Ask them to walk the dog, pick up the kids, or drop off dinner.
  • Ask for help in the kitchen and plan for meals. Make and freeze your favorites so you don’t have to cook, and stock up on foods that are easy to prepare.
  • Pack a bag to bring with you to treatments. Include things such as snacks, water, books, headphones, mints or gum. Click here for a more complete list.
  • See your dentist before you start treatment (time permitting of course).
  • Do some research on what organizations are out there to help you. There are many reliable sources of information that can help answer your questions.  Check out this resource page from Mackenzie’s Mission for suggestions.
  • Seek out services that can give you some back up. Whether it is a meal delivery service, a cleaning company, or a car service to get you to your appointments, there are options out there to make your life easier. These will vary depending on your location, so ask around to find services close to you.

 

Dealing with side effects

  • Communicate openly with your health care team. Don’t suffer in silence. Be sure to report any side effects you face.
  • Keep a notebook to record any problems you have and when they occur. It can be difficult to remember all that happens between appointments.
  • Take your medication as directed to lessen any side effects. Timing can be important here, as is the case of anti-nausea meds, so follow directions closely.
  • Ask around! If you haven’t joined already, support groups are filled with people who have gone through the same or similar treatments; they may have suggestions as to what helped them deal with side effects. But be sure to check with your doctors before trying anything new.

 

Coping with the stress of it all

  • Battling physical symptoms seems obvious, but there is also a mental game involved. Keeping your spirits up through treatment is important but not always easy.
  • Many complicated emotions will come up during the treatment process: anxiety, grief, anger, denial, guilt. You don’t have to be strong 100% of the time. Talk about these feelings with a friend, family member, your doctor, or a therapist.
  • Create something that lifts your spirits, like a photo album of loved ones, an inspirational board, or a journal of your favorite quotes. Keep it close at hand for those tough times.
  • Focus on the things you can do, rather than the things you had to give up. Pick up some new low energy hobbies to help keep you occupied and your mind off your troubles.
  • Remember you are not alone. There are a lot of survivors out there willing to share their story, especially if it helps to make the life of someone newly diagnosed just a little bit easier.
  • Schedule time for fun! Make sure you spend some time doing things you enjoy. Now is the time to treat yourself well.

Living your healthiest lifestyle  

  • Ask your healthcare team what exercise is best for you. There may be times when it’s just not a possibility, but if you can get outside and take a short walk, do it! Just don’t push yourself too hard.
  • You will probably face a few dietary restrictions. Common ones are low sodium and fluid restriction, as well as avoidance of certain foods that can either conflict with medication or irritate an already sensitive stomach. Ask if your hospital has a dietician you can speak with who can create a plan tailored to your needs.
  • Follow those doctor’s orders! And communicate openly with your healthcare team. Keeping a journal of your treatment plan, medications you take, and side effects you experience, will help you keep it all straight.
  • Do what you can to prevent the spread of virus and infection: practice food safety, wash your hands, wear a mask, don’t visit with anyone who has a cold or virus.
  • Get plenty of rest. Try not to push yourself too hard. There will be times you’ll get frustrated with your limitations. Remember to give yourself a break, take it easy on yourself; you’ve got a lot going on.

 

Recognize that some days will be harder than others. Sometimes the best you’ll be able to do is to just breathe and get through the day.

Remember to reach out if you’re having a rough time. Sometimes just hearing that someone else has walked a similar path and come out the other side can give you the motivation you need to put one foot in front of the other and just keep going.

 

 

Lori Grover is a guest blogger for Mackenzie’s Mission. She was diagnosed with AL Amyloidosis in 2016 and writes to share experiences and lessons learned during her journey.  More wonderful blogs by Lori can be found on her page Amyloid Assassin.  When not writing, she is mostly a stay at home mom, florist, crafter, lover of books and food.

AL Amyloidosis: Age at Diagnosis Survey

Is the age at diagnosis of AL Amyloidosis changing?

According to a paper published in 1995 based on a study of 474 AL Amyloidosis patients, the median age of diagnosis for patients was 64 years.1 Being curious as to whether this number has been lowering since then, we went to the Amyloidosis patient community to conduct an informal survey in early 2019.

We heard from 251 wonderful patients from the Facebook Amyloidosis Support Group in response to our question as to how old they were when they received their diagnosis.

Here is what we learned.

 

  • 80% of patients were diagnosed between the ages of 40-69.
  • The largest group at 35% of patients surveyed, were diagnosed in their fifties.
  • The second largest group, at 24% of patients surveyed, were diagnosed in their sixties.
  • The third largest group, at 20% of patients surveyed, were diagnosed in their forties.
  • Just over 10% of patients were diagnosed before the age of 40.
  • The smallest group, at just over 8% of patients surveyed, were diagnosed over the age of 70.

We then organized the data by age to determine the occurrence rate by age range.

In answer to our question about the age at time of diagnosis, per our informal online survey of 251 AL Amyloid patients, the data indicated a mean (or average) age of 54.8 years and a median age of 56. The “mean” is the “average,” where you add up all the numbers and then divide by the number of numbers. The “median” is the “middle” value in the list of numbers. While not possible to definitively conclude, we acknowledge there may some age bias in our results towards younger ages due to the source being social media, and inaccuracies due to data being self-reported.

During the course of our research, we discovered other patient studies which we found informative. In 2015, an AL Amyloidosis patient experience survey was conducted online with 533 respondents.2  Their results indicated a median age at diagnosis of 57. A more recent study in 2017 of 341 AL Amyloidosis patients from across the U.S. found the average age to be 60 years.3 

We also posed the question “Do you think the median age upon diagnosis is lowering?” to doctors at some of the leading Amyloidosis centers in North America. Each of these doctors confirmed that the median is in the range of 57-65. However, one noted that “they are seeing far too many women in their 30’s and 40’s” in clinic. Another noted that they do seem to have an increase of younger patients, pointing out that this may indicate that the disease is being diagnosed in its earlier stages.

While ours was an informal online survey, the results are interesting and worth watching going forward. But we can all agree that this is what we want – that over time the age at diagnosis will lower. Not because the disease is spreading to a younger generation, but because it is being diagnosed in its earlier stages.

It is common for many Amyloid patients to suffer for years before they receive their diagnosis, delaying treatment while the disease progresses. If we can continue to spread awareness of the early warning signs to ensure that doctors across a multitude of disciplines have the latest information and diagnostic tools, hopefully, Amyloidosis will increasingly be diagnosed in its earlier stages. By doing so, treatment can begin sooner and, we believe, better patient outcomes can be achieved.

Mackenzie

 

 

 

 

 

A big shout out to Lori Grover for her collaboration on this piece. Lori is a guest blogger for Mackenzie’s Mission. She was diagnosed with AL Amyloidosis in 2016 and writes to share experiences and lessons learned during her journey.  More wonderful blogs by Lori can be found on her page Amyloid Assassin.  When not writing, she is mostly a stay at home mom, florist, crafter, lover of books and food.

 

(1) Kyle RA, Gertz MA. Primary systemic amyloidosis: clinical and laboratory features in 474 cases. Semin Hematol. 1995;32:45–59. [PubMed]

(2) Lousada I, Comenzo RL, Landau H, Guthrie S, Merlini G. Light Chain Amyloidosis: Patient Experience Survey from the Amyloidosis Research Consortium. Advances in Therapy. 2015;32(10):920-928. doi:10.1007/s12325-015-0250-0.

 (3) McCausland KL, White MK, Guthrie SD, et al. Light Chain (AL) Amyloidosis: The Journey to Diagnosis. Patient. 2017;11(2):207-216.

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