Near Spokane, WA; email@example.com
1950 / Class of '06 / Type: IgA / plasmacytoma / radiation, chemo, SCT, remission / Updated: 8/15
(by his wife, Marge)
My new husband (July 15, '06) had bronchitis in November of '05. He continued to have rib and chest pain for months. He had lots of labs and chest films and everything was normal. Finally his doctor ordered an enhanced CT of his chest. They found a 2 cm lesion on his sternum. The subsequent biopsy showed a plasmacytoma.
We went to Cancer Care Northwest and he had a bone marrow biopsy and labs. To make a long story short, he had 3.9% (could have been a little higher due to clumping) abnormal cells in the bone marrow, an M spike in the 24-hour urine, and an elevated IgA over 1700. By this time he was taking large amounts of morphine for the sternal pain. He had 12 radiation treatments for the plasmacytoma. His pain went away, but returned in early October, and increased until January when he was taking 160mg per day (bone pain, shoulders, hips, neck). He had an MRI and there were no new lesions, but increased bone marrow activity in multiple areas.
January 3 he started chemo. He got into a clinical trial. 50% of the patients get the Dexamethasone pulse and thalidomide. The other 50% also received Doxyl IV, every 28 days. He also gets Zometa once a month. Within 13 days he was taking no (ZERO) pain meds. He also takes Coumadin, Bactrim, and acyclovir daily, Ativan for jitters or nausea. He is really tired, REALLY TIRED.
However, the day before his second round he got another set of labs and 24 hour urine. I got the results Monday, the 5th of Feb. He has no M spike. His IgA is 307!!!!! I think this is an amazing response. The research nurse is excited. I'm an ER nurse, but learning more and more about Myeloma. We have more treatment to go, but I am expecting many more years with this wonderful man. After all we found each other (soul-mates) at 56 years. We have a lot to do.
July, 2007: Hi to all. I wanted to send an update on Fred. After 6 rounds of Doxyl, thalidomide, and Dex, Fred has near complete response. His IgA is 89, but there is still lambda light chain protein detected in the urine. (no percent, just "detected".) We are looking forward to Fred feeling better soon. We will shortly be meeting with the transplant doctor, to look at that option. He continues to be pain free, but fatigued and some hand/foot syndrome related to the Doxyl. All in all, good news, just in time for our first wedding anniversary, July 15. We will keep you up to date as we know things about the transplant.
Update: Fred has another bone marrow biopsy on the 26th of July, then starts a twice weekly routine of Velcade, Dex and Thalidomide next week. That will be 2 weeks on 2 weeks off for at least 2 months. We will then start collecting stem cells for a transplant. His doctor is quite encouraging about long term remission.
January, 2008: The time has FINALLY come. Fred will be admitted to the hospital tomorrow and we are on to SCT. His bone marrow biopsy showed "absolutely no sign of myeloma", last week. Stem cell collection is done. So it is off to the next stage. Thank God. His neuropathy in his feet is really bad, despite medication, but we will be seeing a neurologist while in the hospital. Will keep you posted. Thanks for being there for us. God bless you all.
June, 2008: After laboratory studies, bone marrow biopsy, MRI, skeletal survey, bone density, bone scan, I am pleased to update you all, that my husband is in complete remission, no sign of myeloma. Thank GOD. It has been a long road, from September 2006 to present, culminating in a stem cell transplant in January of this year. He has lost weight, and suffers from neuropathic pain in both his feet, but we are working on that. We continue to watch this site, and have, from the beginning, found it to be so encouraging. We thank everyone who supported us in prayer and e-mails, and will continue to keep in touch. Thanks again! By the way, in July we celebrate our 2nd wedding anniversary, and what a celebration this will be!
February, 2009: Thought it would be a good time for an update. Fred’s stem cell transplant is a year old. All his labs look great, no sign of myeloma. He is bothered a lot by neuropathy, and hip pain. His hips do look a bit “ragged” on MRI. This is most likely due to high dose steroids, and may need hip replacement at some time. Meanwhile, he is regularly working on his art, and bought a tractor for the place. He is looking forward to projects in the spring. We are also planning a vacation, our first, during the winter of '09. We think Panama would be good. Best wishes to all. Keep up the fight. “Say it, fight it, CURE IT”
September, 2011: I cannot believe how long it has been since I last updated. Fred's stem cell transplant is 45 months old. He is doing well, except for his hips. As a matter of fact, he is seeing an orthopedic surgeon today. He has no sign of myeloma. He is not on maintenance drugs. He just sees his oncologist and his transplant doctor several times per year. We are very grateful to God, Cancer Care Northwest, Dr. Sienko, Dr. Kaya, and Andrea the NP.
June, 2013: Been a long time! Fred is now 5 years post SCT. He has no sign of myeloma. We are so grateful to the wonderful staff of Cancer Care Northwest, and most importantly to God for this. He continues to see his oncologist or transplant doctor every 6 months. He does have neuropathy of his feet, which bothers him, but a great tradeoff! He is free of disease, and takes no maintenance drugs. I have retired after 30 years as an ER Nurse (with a couple of years working in Radiology (MRI)), and we are enjoying life. Every day is a gift!
July, 2015: Hello everyone! It’s been a couple of years since I updated about my husband, Fred Epley. He remains in complete remission, 9 years out from chemo, 8 years out from stem cell transplant. I wanted to let you all know about something I found to treat his neuropathy (from thalidomide). Here is the info about NerveRenew. You can find it online and see the reviews.
It contains Vitamin D 500U (cholecalciferol), Vitamin B2 4mg (Riboflavin), Vitamin B6 4mg (Pyridoxine), Vitamin B12 2000 mcg (methylcobalamin), Benfotiamine 300mg, and R-Alpha Lipoic Acid150mg, and 4 mg of a blend of feverfew, oat straw, passion flower, and Skullcap root. 2 capsules, twice per day .
Fred’s neuropathy was pretty severe. Pain and numbness in feet, extending up the lower legs, decreased sensation to genitals. We have tried all the prescription drugs with little to no relief. I kept researching, and came across a study in Canada for NerveRenew. He has been on it for 3 months, and is having amazing results. Last month, he walked across our deck in bare feet, something he has not been able to do for years. He doesn’t move his feet as much during sleep, so I sleep better too, and is even gaining genital sensation. I wanted to share this with you all. We are amazed with the results. The web site offers a 2 week trial, and a one year money back guarantee . I am hoping the information will help others.
Fred and Marge
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