[LibbyC]

Re: Is there hope?

by LibbyC on Fri Jul 19, 2013 9:48 pm

Dear Jayhawkmom,

There is always hope. Every myeloma case is different but there is always hope. If you looked at my clinical results and prognosis they weren't good (in fact knowing now what I do about this disease my prognosis was really poor) . At one stage I asked the head of the myeloma clinic whether he had had other patients like me - his reply "One - we have managed to get him into a trial of a new drug. You (meaning myself) wouldn't qualify for the trial because you have had renal failure". After having an allo I am now in remission.

I like what Ted says "Life is short... eat dessert first!

All the best for you and your family,
Libby

[Mu grandma]

Re: Is there hope?

by Mu grandma on Sun Jul 21, 2013 7:34 pm

Hi, my husband was diagnosed with multiple myeloma 3 1/2 years ago. It definitely is a journey. I started a journal the day we got the diagnosis & have kept track of each day we have. It started with hip pain, then arm broke,then back, few months later collar bone. 2 stem cell transplants, every chemo drug for multiple myeloma & a clinical trial . We were told a few months ago-1 to 2 months was all we had but we just came back from the Ozarks. My husband was able to fish & felt fairly well. Was in bed for 3 weeks recently & using wheelchair because of tumors causing pain. Radiation eliminated that & back to using cane again. After reading Beacon for many months I realize every case is so different .. Trust in God & pray each night. KU is a great hospital. Every dr & nurse has been great. We have Dr. Bree Lipe who is a multiple myeloma specialist at Westwood Cancer center.

[Jayhawkmom]

Re: Is there hope?

by Jayhawkmom on Mon Jul 22, 2013 11:38 am

Thank you all so much! Just reading all these postitive stories has lifted my spirits and given me great hope now. I didn't have anthing to compare his case to and now i do. I feel so much better! I don't know what I would have done without this forum and all you wonderful people. Thank you so much. I will keep all of you in my prayers as well!

[rwroyal]

Re: Is there hope?

by rwroyal on Mon Jul 22, 2013 1:13 pm

Your situation sounds a lot like my wife and me. I was 39 when I was diagnosed with multiple myeloma. We had 4 kids at home ranging from 7 to 17. I had stage 4 and my numbers looked similar to your husbands IGG 5647, IGM 17, IGA 20, Gamma Globulin 3.6 etc.. It took 4 chemo treatments to knock it down enough to do two autologous transplants (2 back to back) in 2004. I had some pretty dark days in the beginning but once the initial shock wears off you learn to live again. Things change but stay the same. My kids have been my saving grace and my wife has been terrific. I owe her a debt that I can never repay. Ten years later I’m back at work, my youngest is a senior in high school and my three sons have all graduated from college. I’ve had a pretty good life. There is a lot to live for and to fight for, staying positive is important. I would encourage everyone to look up the poem that Nelson Mandela found inspirational while being held captive and apply that courage to your life. The poem is “Invictus - by William Ernest Henley”

[Jayhawkmom]

Re: Is there hope?

by Jayhawkmom on Mon Jul 22, 2013 1:27 pm

Thank you rwroyal! I appreciate your response and words of encouragement. I think now I can relax a little and count our blessing I have renewed hope that we can get through this and I will have many more years with my husband and my children will have many more years with their father!