An update from captraerae

captraerae said…

I am finally getting back to the support group. Among the treatments, etc we moved from a large home to a smaller home and with just a couple days a week when I feel well enough to sort, pack and all that goes with a move, it has been exhausting. I just completed my fifth chemo treatment. I am getting Valcade in a shot, Dexamethasone, and Cyclophosphamide. Wednesday is treatment day, and the Dex makes me go like a house afire. Then I have trouble sleeping that night, so on Thursday, I start going down hill. Friday is the worst day. Saturday I begin the upswing, and by Monday and Tuesday, I can't believe I have anything wrong with me. I got a positive report yesterday. There were no abnormal proteins showing up in my bloodwork, and the Lambda thingys were going down. So that makes me feel a bit brighter. The fatigue seems to be the worst. How is that for everyone else? The Cyclophophosomide throws in a bit of nausea, but no vomiting. Thank goodness. I am so thankful there is a support group available. I had a friend who passed away from amyloidosis. The Mayo doctors said the disease is rare and the fact that I even knew someone who had the same disease is extremely rare. So a day at a time, and enjoying every minute. Staying positive. Best wishes to you all as we struggle with these nasty little protein things!!

Thank you for the update, captraerae. I hope you continue to do well!


Hi captraerae,

It's wonderful to hear that you are feeling better and that the treatments are working. From my experience, you are very normal--the fatigue is the worst for me, too. Fatigue was what really kept me pushing to get diagnosed. While I had other symptoms, the tiredness was extreme and impacting my life. That subsided during chemo, got worse during and after SCT, and is now better. But, I never quite got back to my full steam. But, it is better and that is good.

I also did well on Velcade. My treatments were Tuesdays and Fridays--I would be good on Monday and Tuesday, okay on Wednesday, not so great on Friday, okay on Saturday and not so great on Sunday. I will be returning to velcade in a month or so--I am recovering from back surgery right now and need that to heal.

How long will you be getting chemo? Is it once each week? I am really glad to hear that you are getting through it pretty well.

fatigue was real bad at first but gradually got better after chemo. Still not exactly what you would call energetic but not nearly as bad as before.. All the best in the future..mike

Keep on truckin'! I finished my treatment four years ago, and still have some fatigue issues. I would think the eventual level of fatigue depends on which organs were involved. For me it is heart and kidneys. I just got a good report from my nephrologist, and will have my 6 months check up with my hematologist next month. I am not too fatigued to do what I want to do, I just seem to have a limitation on my energy level, so I have to temper my expectations. Hey, if that's the worst of it right now, I'm happy with that! You can get through your treatment regimen and move on with your life. Thank goodness that more and more attention is being given to this rare disease by the medical community.

had the same kind of chemo in 2012 did not cause me any more fatigue than I already had. Was able to do so little so it didn't seem to make much of a difference

I’m so sorry I didn’t get your discussion until now 7/4. I’m just one yeR in remission! My proteins wee in my kidneys,heart gut and skin (I itch all the time and no help. I was on cytoxan,déjà methadone,and velcade every week for a year and every two weeks for six months! I really lost two years of my life. However I’m greatful I had a great team that found it. I’m under the care of Stanford also went to the mayo clinic. When I ueart failure I went to Stanford it’s much closer for me. I feel blessed that you are all here to support. It helped a lot. Good luck. Kay heaton

I am really glad you are doing well, Kay. Thanks for sharing the good news!

I am so glad to hear of your positive report. My dad had this roller coaster. We looked forward to the good days and waited patiently for them to come. We loaded up the bikes and went mountain biking or played tennis on his really good days. We enjoyed a neighborhood bike ride on his pretty good days. We waited patiently for the bad days to pass. We had a lot of good days. Don't be discouraged that my dad is no longer living. Losing him was a fluke...the doctors let him get his knee replaced after years of begging. We took a risk is all. He lived really well with treatment of his cardiac primary systemic amyloidosis. It has been hard for me to quit fighting the good fight. I traveled to Mayo for over 2 months throughout his 2.5 years of treatment. I love to hear your positive results. Keep up the good fight and plan something fun when you get the chance.