My 48 year old husband was diagnosed with systemic primary AL two years ago. He has had a stem cell transplant at Mayo with the followup chemo. He is currently taking Revlimid, on 21 days, off 7. He has really done well except for not much stamina. I should mention at diagnosis, his kidneys, liver, spleen, GI, and nerves where all involved. However, he had only mild cardiac involvement. Again, since the transplant, he has done well. But since December, he was diagnosed with diabetes, he seems to be having lots of bloating and gas, then this morning, his ankles and hands were swollen. He has a rash on his arms as well. He believes it is allergies. His next check up is in August. Am I overreacting???
I am so glad I have found this site. I would appreciate any input.
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symptons ??
- By apr
- Posted June 13, 2009 at 7:42 pm · 10 replies
- In Primary amyloidosis (AL)
- Shared with the public
Explore topics in this discussion:
Surgery Back pain Allergies Stem cell transplant Diabetes Multiple myeloma Constipation Pain Thalidomide Edema Benadryl Revlimid Amyloidosis
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- By fulviaschild
- Posted June 14, 2009 at 11:01 am
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I would not wait unitil august for a check up if he is having swelling in his anklesthis could be an indication of worsening of cardiac involvement)?, my mothers had amyloidosis with cardiac involvement but she never had swelling in her ankles until fter she had heart surgery. Then after a month or so she began to have the ankle swelling and her shortness of breath became worse.(Fluid in the lungs)
After going through what we did with her illness I would never put off going to the Dr. if new symptoms show up. you never know and it is better to catch things early with this disease. It could be an allergic reaction but I would make sure.
Let me know what the DR say's.
Will be praying, Terri
- By fulviaschild
- Posted June 14, 2009 at 11:10 am
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Hey,
It's me again, I just wanted to give you the Amy web site. There is a lot of good info there. http://www.amyloidosissupport.com/
Terri
- By apr
- Posted June 14, 2009 at 12:55 pm
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Thank you for your response, Terri. It is wonderful to be able to talk to someone about this. What I am battling (and I know it is nothing compared to what he is) is his denial of anything wrong. He became furious with me when I suggested calling the Dr. since they always check for that. He does not like me to tell the Dr. if he is having symptoms; we had a huge fight in the waiting room at the Mayo Clinic, of all places, over it. I think he is in denial and he thinks I overreact so he hides things. It would almost be comical if it wasnt a life threatening disease. Oh, well...... As far as I know, he has not been short of breath. I am sorry to hear your Mother had this. Was her cardiac involvement mild or moderate, severe when she was first diagnosed?? And did she have a stem cell transplant??--if you dont mind me asking.
- By fulviaschild
- Posted June 14, 2009 at 1:44 pm
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My mom went to the emergency room the end of jan of 2009, then had heart surgery on Feb 5th of 2009. She never got better from that, her electrolytes stayed imbalanced and her sodium and potassium were the worst. Well, she continued to have pulmonary edema and all the doctors did was raise her lasex and tell her to lower her salt intake. She was livng wth my sister at the time and at the beginning of march she came to stay with me. As soon as she came here we ended up at the emergency room with shortness of breath,they admitted her for the edema and because she was a recent heart sur.pt.
After many doctors trying to find out what was going on, she was found to be bleeding from somewhere enough to require blood transfusions. I has her moved to a hospital that had a better cardiac unit. She was in and out of the hospital from march until may (2009) and at the end of may she was sent to emory in atl, and after being there 1 week they diagnosed the amyloid, and by the time they found it, it was too late. They tried chemo but on her 4th treatment she passed away(june 15,2009). they also found that she had multiple myeloma, and that she had been sick for a long time but all the doctors that she went to missed it. This is why I say to go to the doctor and if you don't get the right answer and know that something is wrong you get another doc.
You are at Mayo and I hear they are the best. Your husband doesn't need to ignore the symptoms but I know men can be stubborn.HA My mom's heart was functioning good after surgery but it steadily began to decline afterwards, and her gastro symptoms got really bad and we found out this was due to ulcers and they believe she had amyloid in her gut, she got to where her bowels did not move and this was a horrible time. Anyway I don't want to sound grim, but going through this with my mom was very stressful and i don't know how you can get him to the doctor to check on his heart, just to be sure, but he needs to have it checked. Maybe you can call his doctor and let him know and he can call your husband and get him to come in. If he gets mad it's ok, we love them and that is why we are doing it.
I can't imagine being in their shoes, I know it has to be unbelievable. My mom kept saying she couldnt believe she was going through this,but she had a strong faith in God and that is what helped us.
- By apr
- Posted June 14, 2009 at 4:07 pm
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You have really been through it; I am so sorry for your loss. How frustrating to be so late with a diagnosis!! My husband was diagnosed Jan 07, after losing about 25 lbs and just feeling bad. Bloodwork showed his numbers off the charts, kidney proteins, etc. but once diagnosed, we were on the plane to Minn by the end of the week. The last 2 years have been ok; its the past 6 mos. or so---the constipation, back pain (x-rays and MRI showed compressed vertabrae and bulging disc), but his kidney protein was going down and his creatin was good when tested before the MRI. From what I understand, kidney function is a barometer of this disease?? But our family Dr. hinted that problems in the pancreas (amyloid) could have been the reason for the quick onset of the diabetes. His oncologist knows--but the thing is--my husband doesnt want to know, he doesnt ask questions; but I do. I want to know what is ahead, what will likely happen, what to expect. We have 2 children. I understand the prognosis is not good. We were told you may
- By apr
- Posted June 14, 2009 at 4:09 pm
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oops.... we were told you may can fight it unless it is in your heart then there is no chance. But how involved --his was/is mild....... I guess I am just venting. Thank you for listening.
- By GaPeach
- Posted June 14, 2009 at 5:47 pm
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Hello Apr,
We spoke about this very thing at the Atlanta support Group meeting yesterday. Dr. Jonathan Kaufman from Emory University Hospital was our guest and he spoke for a while about patients withholding symptoms or concerns. As you already know, they can't treat a problem that they don't know about. You must continue to take the bull by the horns, be a proactive caregiver to your husband and give his doctors a call. It sounds like he is scared that the amyloids could be active again, so his mode of self protection is denial. While it may make him mad now, if you call the doctors, he will appreciate it in the long run. Has your local doctor called his doc at Mayo? Have them fax his most current tests over to Mayo. If they refuse to do that ask for copies and send them yourself. Who is your husbands doctor at Mayo? The Mayo doctors will also respond to emails from their patients. Please dont' wait around, call or email them NOW!
I see that your husband is taking Revlimid. Are you having any problems getting your insurance to pay for it? Do you have a large co-pay? Celgene has a patient support program that can help you with insurance problems....or get you the drugs for free if you meet their guidelines. You can go to www.celgenepsc.com for more information. We also have another email group that has over 620 patients, caregivers, friends or family members as members. You can sign up for that group by going to www.amyloidosisonline.com. You can also call Muriel Finkel, President of the Amyloidosis Support Groups at 1-866-404-7539 (toll free). She is a wealth of information and would welcome your call. Have you ever attended one of our support group meetings? If you go to www.amyloidosissupport.com you will find a list of our meetings. Hopefully one is located in your area. Please stay in touch and let us know how your husband is doing.
Paula Schmitt
Localized Amyloidosis
Atlanta/Jacksonville Facilitator
Amyloidosis Support Groups
- By apr
- Posted June 14, 2009 at 7:52 pm
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Thank you, Paula, for all the good contacts. We have really been blessed with his insurance. Our co-pay for the Revlimid is $20.00.
Thank you and Terri for the encouragement. I know what to do first thing in the morning. I would really love for us both to attend a support group meeting. I am a Social Worker and understand the importance of these groups; but I have felt frozen. I guess when you are in the middle, you lose sight of what needs to be done.
- By Luu
- Posted August 3, 2009 at 10:34 am
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Hello, my hubby has myeloma with amy and have dealt with rash and similar symptoms you mentioned. Revlimid is noted for causing rash and sometimes can be severe. Hubby was taken off last Nov for just that. We are making another attempt taking low dose, but rash is coming back. He is taking benadryl and it helps, but we may be changing meds again. If he is taking Dex with his Rev....it may help him also...however, dex has it's own side effects. Doctor has to evaluate and he may elect to change his med. Thalidomide doesn't cause the rash like Rev with us, but the neuropathy, fatigue and being sleepy all the time, did accompany Thal. Each drug has it's own side effects and we haven't had one that doesn't. New meds are in study now, let's hope something will come out better. Best of health to you and hubby.
- By goober
- Posted August 16, 2009 at 11:58 am
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NEVER put it off and never stop until you are satisfied. Your husband knows his body the best. Speak up & be heard. We have had to fight & fight to get help for my mother. No one listening & months & months keep slipping away.
I don't think you can be too cautious with this disease.
God Bless
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