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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.

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