Caring for a spouse with AL Amyloidosis - Do's and Dont's

My wife and I have been married for 20 years and this disease she has will surely change the dynamics of caregiver over the next year.

Does anyone have any advice on caring for a spouse through chemo and hopefully a stem cell transplant in late summer?

One thing I learned last week was she was not ready for joining a support group. We have a Facebook page together and I joined the FB support group page and she read through the deaths of peoples family memebers and it freaked her out.

Oh, I am sorry to hear the groups scared her. I understand completely that it would be scary for her, Matt. It takes time to come to terms with the hand she has been dealt. But, outcomes are getting better all the time, and new breakthroughs on the horizon. It is great that you are here for her.

Hi Matt,

It is hard for those of us who are used to being the caretaker to become the one in need of care. I had 5 months of chemo and then a stem cell on 12/12/12 so I know what I needed people to do for me during that time.

First, I needed to be able to continue to be in control. I wanted to work when I felt like I could and take care of all the things that I wanted at home when I could. I did not want to be treated like an invalid at any point. However, I did need more help than I ever needed before.

The chemo was not terrible but for me eating was not the best. I had to stick to a very bland diet during chemo weeks or I would not feel good at all. And, I needed more rest during those weeks. In the off weeks, I felt pretty good and wanted to be normal for a few days.

As the transplant grew near, there were a lot of uncertainties and I wanted to talk about those a bit with the people closest in my life. I wanted to keep a positive attitude and wanted those around me to do the same.

The time after the transplant is the hardest. One feels very, very tired and, perhaps, not at all interested in eating. Sitting around and doing nothing for hours on end happens for a number of days. If you are used to always being on the go, this is a pain. But, it is temporary. It took me about three weeks to feel any better but after that, things accelerated quickly. I worked from home three weeks after transplant but since mine was during the winter and flu season was not allowed back to the office until March. I enjoyed people coming to see me at that point. Early on, I really did not have the energy to spend visiting.

However, maintaining my independence was very important to me even during the worst of times. I wanted to push myself as much as possible.

In summary, let her take the lead--if she wants your help, provide it. If she wants to do things on her own, allow her to do so as long as they are not damaging. Help her with what she wants you to help her with.

You and she will get through this. Once about three months go by, you feel almost back to normal. I will be honest that my full energy has never quite returned. I was used to sleeping about 4 hours per night and working about 75 hours per week. I now need to sleep about 8 hours per night and work about 40 hours per week. But, I am alive and happy to be enjoying life.

Does she have faith in her physicians? That is the most important part. The relationship that I have with my doctor and his staff is very important to me--they have been there for me all along the way.

Does this help? Please let me know what else I can tell you!

Darcy

Great advice. I think she needs to see, read about, and hear from as many survivors as possible. Hard to see past the horizon right now of how this will all turn out. She loves her hematologist and nephrologist doctors. That is why we have not looked for a second opinion.

You are right. I went to an amyloidosis memorial wall a few weeks ago and read more than one hundred tributes to people who died from this. My city's mayor and our state's governor died from this in the past so when I tell anyone I have this, they look at me with terror. Of course, people died from this but as time passes, there is better treatment and more options and even more coming. We have to keep positive and believe that we are going to the ones to beat this think!

Let me know how I can help. I was diagnosed about two years ago and I am still here and doing well. I do monthly blood tests to check the FLLC levels as well as my heart and kidney functions. My cells are stored for another stem cell just in case. But, I plan on sticking around until there is a cure. Where is she being treated?

She is being treated at University Hospitals James Graham Brown Cancer center in Kentucky. How bad were your heart and kidneys when you started treatment ?

I was very lucky as my kidneys were not at all damaged. It hit my intestinal system, my heart, and my liver. My cholesterol was through the roof for no good reason and they could not figure out why. No matter what we did, the cholesterol would not lower. I had tests on my intestinal system and they found nothing. I just kept pushing for answers. I had carpal tunnel and when I went for the pre-surgical screening, I failed the EKG and then the stress test but a cardiac CT showed no blockages or valve issues. The afib issue was pretty steady but it was not until I had gone through an endocrinologist, rheumatologist, and cardiologist, that I got to an oncologist who ordered a bone marrow biopsy and after that an abdominal biopsy that got the diagnosis. By then, they thought that I had some heart damage but when we did the cardiac MRI before the transplant, I found that I have no heart damage either. My FLLCs are starting to produce a little at this point so we are watching for any sign of heart issues--that appears to be where I see the problem starting the most. What about your wife? How did she find out? How is she otherwise?

Her feet/lower legs started swelling she felt fatigued and her labs were off the charts. Primary Care doctor dismissed all of it and told her to drink more water, exercise, and eat better. She was very healthy and did all of that, so she came home and googled her labs and it pointed to her kidneys not functioning correctly. We contacted a friend from church who is a nurse practitioner at a Nephrologist office she asked a few more questions and had us an appointment two days latter. After the lab work was completed the Nephrologist said she had Nephrotic syndrome and she was in stage 3 kidney failure (37% kidney function). She scheduled a kidney biopsy a week later and it was sent to Vanderbilt hospital. 3 days later we received a call and they said she had Amyloidosis. 2 weeks later we met the Hematologist, more blood work, Heart MRI , and a bone marrow biopsy. All of this has been in the last 6 weeks. Kidneys are now down to 10% and we are not sure how much the heart is affected, but know it is there. I has been a whirl wind if doctor visits and tests.

It is amazing how this disease alludes discovery. For more than a year, I had swelling in my legs and feet, on and off but not consistently. I was so tired. People kept telling me I could not keep working at the pace I was working and I attributed the afib and swelling to hormonal issues. I knew something was wrong but it was hard to nail it down. I was lucky to get some good doctors who kept it moving and finally heard all the stuff I said was happening. As I look back on this, I was having signs of this about 8 years ago--it was just beginning, I am sure of it. The fatigue is something that cannot be explained--it is extreme and not a typical tiredness.

Is there a chance her kidneys will return to a higher level of functioning? Are they testing her heart further to assess that damage--they should know from the MRI? My amyloid took a large dive after my first velcade round--I responded rapidly and well with it. I may be going back to it in the future if my level continues to rise or my symptoms return. It's not what I look forward to but want to make sure that I keep as little damage occurring as possible. Would be happy to talk to your wife if she ever wants to talk to someone in the same boat. Just let me know. She is lucky to have you. My husband died 5 years ago from a sudden heart attack. I am lucky that I have a great daughter and son-in-law and a little granddaughter who was born on the day I was scheduled to begin round one of chemo--I view her as my sign and good luck charm!

We are hoping kidneys are going to return. She is at the border line of having surgery for peritoneal dialysis catheter. Kidney function went up from 9% to 10% on the 2nd week of chemo so we hope this is going to be a trend each week. She could not take the contrasting dye in the MRI test so we are not sure how bad it is or the doctor is not wanting to tell us how bad. He said he will be concerned when the SCT occurs.

Matt, Do you know if the doctors have checked her troponin and NTproBNP levels? These are simple blood tests that monitor the heart function. If those numbers are elevated then there could very well be some heart damage. It is essential that they determine if she has heart involvement before even considering a SCT. I really wish you would come to the Patients Day seminar tomorrow. You would learn SO much. That is something that you can do as a caregiver. I know she had chemo this week and may not feel up to coming but you could still come on your own. I still strongly urge you to get a second opinion. I don’t think I mentioned Dr. Benson to you in my previous posts. He is at the University in Indianapolis and knows how to treat all types of Amyloidosis. If nothing else, a second opinion will give you the peace of mind to know if she is on the correct course of treatment. I am glad that you have joined the Facebook group because you will learn this same thing from others on the group.

DBT has given you some great advice on what to do and not do during this process. But please remember to take care of yourself during this process as well. You are just as important as your wife and you need to be OK as well.

Matt,

Ga_Peach is right. They monitor my troponin and pro-BNP levels every month-before and after the SCT. My pro-BNP levels were very elevated before the SCT but they are quite good now. It is the way they make sure that my heart is not having issues with the amyloid production.

She is also right on taking care of yourself--you have to be sure that you get enough rest and stay healthy, too. While you are concerned for your wife, your position is not at all easy, either. It is hard to watch someone be so ill.

Amet a lady at the Patients day event that had a SCT 18 years ago in Boston. She currently competes in Grand Prix show jumping events with her horse Sabrina. She is from London and had been written off by the doctors there. When she arrived at the Boston Amyloid Center she was in a wheel chair. That second opinion saved this woman’s life. It was amazing to hear her story and see how great she is doing. I will try to get my complete notes from the meeting posted in a while. Sorry you could not make it.

Hello.. We have been married for 21 years and I had stem cell transplant and chemo. back in the fall. We have four kids. and a week after my stem cell transplant my dad died. I was let out of the hospital to attend the funeral but that was it. It has been a long road full of many good days and bad days but you will get through it. I was treated at Beth Israel Medial Center in Boston and now share my treatment with the Amyloid Center at BU Medical Center.

I had to retrain my body to do everything and I was re-admitted to the hospital a couple of times. I had my six month check up a month ago. I am not in remission but it appears I am headed that way. I have Amyloid in my heart and kidneys and I have neuropathy in my hands and feet/legs.

It has been a long process but you will get through it!

It took seven months to get my FLLCS into the normal range after my SCT. As long as things are headed in the right direction or are stable, that is good news! I am sorry to hear about your father--life seems to give us a lot at one time to manage. Somehow we do get through it all.

Matt how are things going? You two holding up ok? I know how overwhelming all this is in the beginning but as you learn more from the other patients, it does get a bit easier. We are all here to help you two. There is no doubt that this is a scary diagnosis, but treatments have come a long way and we are seeing patients living with this disease as more of a chronic nuisance. Getting the correct treatment as soon as possible is key. Your wife is young and that will be on her side. Once the production of amyloid is shut down by the chemo her organs will have a chance to begin their recovery. That is a slow process and will take over a year or more. Have patience, and take it one day at a time.

Paula

Today was the 4th CyborD chemo treatment. Blood work has shown improvement each week. Kidney function is slowly improving enough to keep her off dialysis. Next week they will check for amyloid levels hopefully lower. Each week has it’s new challenges with drug side effects, mainly jitters and sleeplessness from the steroids. I came down with a bad viral infection the last few days, so I have had to separate myself as much as possible to keep her healthy.

Thanks for checking in on us on this long journey.

Matt

Glad to hear that there is improvement--that is wonderful! Take care of yourself, too, and feel better!

Has she tried taking the Dex at the opposite time of day? I did verify that last week with my doc while in Indy and he said its fine to change up the times.If it gets too bad they may need to consider cutting back on the Dex a bit.Not all patients can tolerate the full dose.Keeping my fingers crossed that her FLC’s will have dropped substantially and that her kidneys keep hanging in there.