Ben's Friends is made possible by generous donors who help pay for the costs of maintaining our network. They share with us, and we would like to share your story with them. Post what Ben's Friends has meant to you!
In your post, we'd love to hear a bit about your Ben's Friends story: how you were welcomed, what the support of your peers did for you, how Ben's Friends has made a difference in your
life and your family's life, or how being here has changed how you cope with your rare disease. Or anything else you can think of!
It doesnāt have to be long. And if youād rather share your story privately, send a PM to me, or to ModSupport (find them in the members section.) Would you rather do a video testimonial? Even better! Send a PM to ModSupport. They will tell you the easiest way to do one.
Ten years ago when I was diagnosed with amyloidosis, I had never heard of the disease. A misinformed physician handed me some literature that indicated I did not have long to live. Thankfully I found a hematologist who was on top of the issue. For six years I took oral chemo drugs. Though the damage was already done to my heart and kidneys, the disease progression was stopped. To this day I have never met another amyloidosis patient in person. So what Ben's Friends means to me is that I can be a cheer leader to the patients who come to the website and are newly diagnosed. I can share my experiences and I can give them hope that there can be a decent life after this diagnosis.
Is there anybody else out there who would like to say something positive about this Ben's Friends support site? We'd love to hear something that we can share with the people who support us financially during the annual fundraising drive.
Hello everyone: their is hope. Iāve been in remission for two yearsš, I had chemo & dex for 1 1/2 years every week . I just came back from Stanford & I continue to improve. Even kidneys, heart & skin improving. My body is not like it was before however Iām great ful for everyday
Hi everyone: Iām still in remission itās been two years now. This disease has left some issues, anxiety & high blood pressure. Iām working every day & love my life. Good luck everyone
Kay, itās so good to hear your positive news. Iām sorry it took us so long to notice your post: weāve changed platforms and weāre still on a learning curve.
Thanks for dropping by. Donāt stay away for so long this time!
Seenie from Moderator Support
I am a 3 year survivor. I was 71 and healthy in most ways. My kidneys were affected. I was treated for 6 mos. with 2 chemos and Dex. Went into VGPR. Was on Rev 5mg as maintenance. In March MD said I could take a break from Rev. My labs are still good, so I am still on break. However it is scary being off the Rev. I feel pretty good and my kidney has almost returned to normal. I attend a support group for MMpatients because their treatments are like mine. I have not met anyone else with this (AMY Primary) either. I did not opt for the transplant. I would be interested in hearing from anyone else who is not taking a maint. drug.
Barbara (acekeyr)
I am 49 year old from New Zealand newly diagnosed with MM and AL Amyloyosis present in my heart and kidney. I began chemo 4 weeks ago. This is a huge learning curve and I am still coming to terms with the diagnosis and life change. This year has taken me from an energetic hard working single mother to wondering when I will get the energy to get dressed in the morning. Can anyone suggest any tips for coping as a newbie and especially coping with the effects of chemo. I have just started CyBorD, not eligible for SCT.
Regards
Merrin
Merrin: You do not say how long your chemo treatment will be and I didnāt have same drugs. I had 6 cycles of VelcaidRevDex. This time was full of fatigue and then a roller coaster of the Dex uppers (sleepless nights), mood swings,etc. When I got off that and was only on the Rev low dose for maint., it was better,except for diarrhea side effects, and still a bit of fatigue. (I never see the end of a TV movie.) My energy level is much better now. I was scared of everything the first year. Totally life changing. I did my best to keep my life the same, but it really wasnāt possible with the labs and MD appts. plus treatments. Now I have a much better life. I just returned from a 5 day trip via air west to east coast to attend an honor ceremony for my 17 year old grandson. I couldnāt have done that in 2014. Give yourself permission to ask for help, esp. with your child. Report side effects to your MD. I actually could not handle the original dosage prescribed for Revlimid. Hematologist changed to lower dose over more days. Worked better. I did not have a child at home. THIS IS A LOT! A word of encouragement: in 1998 my then 30 yr old daughter was diagnosed with stage 3B lymphoma, given a 45% chance to live 5 years. She was here for Christmas this year. 18 years cancer free. Her chemo was way worse than mine, but shehas had a good life with no recurrences.
Barbara
I am not sure how long my treatment will be. Could be up to 9 cycles (9 months) but it will depend on how I am responding. I have an appointment in 1 week with my specialist to go over the first full set of bloods since startingā¦fingers crossed.
I also am also a 3 year survivor. AL Amy.Congrats to us. I took three cycles of cybord (cytoxin, velcade& dex) for three months, then stem cell transplant. I was on Imbrutinib for maintenance. However, I was taken off in July 2016. I am doing great since I have been āaunaturalā. My numbers are almost as good as when all this mess started. And continue to improve. Try to relax but I know it is scary.
Missy;
Good job. I have been attending a MM networking group quarterly to see. if any other Amy peep show up. A while back there were a couple of MM. Peep who had Amy secondary to MM.
I am lucky to live in SFBay area where there are good resources
Acekeyr. Aka Barbara