[mrsv118]

Smoldering ...

by mrsv118 on Sat Aug 11, 2012 7:06 pm

I was diagnosed a week ago with smoldering multiple myeloma. Started with an incidental finding at my primary doc's during a routine physical. Haven't been sick at all. Went to the heme/onc doctor and my bone marrow showed 30% plasma cells. I had light chains in my urine and an M spike on my plasma pheresis. No lesions on my xrays or MRI.
I feel lost........
I spend a lot of time in denial unless I'm making myself crazy on the internet trying to understand this cancer.
When I tell people about it I feel like I'm talking about someone else.
I'm trying to decide where to go for follow up and treatment. Many good cancer centers are around me in Delaware. Fox chase, UPenn, Sloan, How do I decide where to go?

Thanks for being here!

[terryl1]

Re: Smoldering ...

by terryl1 on Sun Aug 12, 2012 12:03 am

Sorry you have to go through this. For me, I was diagnosed last year with SMM at age 49 with a wife and two young kids at the height of my career. The shock has worn off and I am determined to lick this condition and be here for a long, long time. I live in your region and was monitored as a smolderer at both UPenn by Dr. Stadtmauer with whom I would encourage you to make an appointment. I was also evaluated and monitored at the NIH by Dr. Landgren in Bethesda, MD. I would strongly encourage you to call his office and make an appointment. for his smoldering myeloma study. He is an outstanding doctor and one of the world's leading multiple myeloma experts. There is no cost and you will get a world class evaluation. Many people on this site go to the NIH. In April of this year, I suddenly progressed to active myeloma and chose to be treated at the NIH in a special carfilzomib trial. I am doing quite well. Anyway, my advice is to learn as much as you can about myeloma because there are different philosophies regarding treatment, monitoring, etc. There are also different treatments and many hospitals have clinical trials and you may want to go that route or the "standard" route. This is a disease where the patient makes the ultimate treatment choice and it is a heavy burden, trust me. Good luck and if you want you can send me a private message for more details. Terry L.

[Louise777]

Re: Smoldering ...

by Louise777 on Mon Aug 13, 2012 9:28 am

So regretful to learn you have this devil of a disease. Good news is you caught it early. I have met people who have been smoldering for as much as 20 years. It takes time and faith to adjust. I cried and felt deserted by God for nearly a year. It's little comfort, but that horrible reaction is normal. I wish I could offer you so much more help and comfort. For me, I found no comfort until I could pray and put it in Gods hands to guide me to the right doctors and decisions. My best wishes for you. Louise

[mrsv118]

Re: Smoldering ...

by mrsv118 on Tue Aug 14, 2012 8:57 am

Thanks Louise777,

I am adjusting...
I am so thankful that I have a great relationship with God. I believe that it is the damage we humans have done to our planet that is causing all this disease. God will be with me all the way through this journey, however long it will be. "I can do all thing through Christ who strengthens me"!

I am getting myself organized and setting up appts for second opinions and monitoring. I still have my moments but all in all I think I'm doing well.

Looks like i found a great support group with all of you!

thanks

[Art]

Re: Smoldering ...

by Art on Wed Aug 15, 2012 3:25 pm

I am sorry to hear of your Diagnosis. I agree with you that it is due to our environment. I was diagnosed with SMM in Dec. 2011 at the age of 40. While I know it feels like a death sentence, it's not. I was planning my own funeral in my head for a week after diagnosis so I know what you are going through. I was looking into the benefits my family would get and so on. It will take time to come to terms with this (at least for me it did) I have 3 children ages 11,13,15. It is always with me and I think about it everyday but, I'm doing good and feel great. I also found out by chance through a routine physical. I am also in the Smoldering Study at the NIH under Dr Landgren. Check it out you won't be disappointed.
Please remember, You Do Not have Cancer! You have a precursor to Cancer. You could Smolder for years and even forever. Hang in there it will get better and Trust the Lord! You need to educate yourself but try not to get hung up on Statistics. We are all different and we are affected differently. Try to take care of yourself. Eat well and exercise. I have been on a very intense exercise routine and feel very well. I eat fairly well but could do better.
Feel free to contact me if you would like to
Good Luck and Gods Blessings
Art

[Perryfield]

Re: Smoldering ...

by Perryfield on Thu Aug 16, 2012 12:01 am

Hi Everyone!

My name is Anthony and my beautiful wife Claudia was diagnosed with Smoldering Myeloma afew weeks ago. She just turned 55 over the weekend. As you can all understand, it has come as a huge shock to us as it was discovered during a routine blood test and confirmed via a bone density scan and bone marrow extraction. All other vital signs within the blood test were normal and the specialist considers Claudia to be healthy and well. Claudia power walks every day and we have always been conscious of what we include in our diet. She also drinks alot of water and despite the fact that we have always considered ourselves faith driven, our faith and relationship with God has become alot deeper which provides us with a sense of calm. Sure we both have our moments and it is constantly on our minds....to be honest the shock of it seemed to affect me more as for a couple of weeks I would simply cry at the drop of a hat and it has affected my blood pressure which has never been a problem before, but our love for each other is pulling us through. God is certainly walking with us and guiding us and we are so blessed to have family and friends who are simply angels. I wish you all the very best on your journey and that God will be with you all. We will include you in our prayers and trust that you will all enjoy long, happy and fulfilled lives with your loved ones.

[Dr. Peter Voorhees]

Re: Smoldering ...

by Dr. Peter Voorhees on Thu Aug 16, 2012 9:43 pm

Dear mrsv118,

Fox Chase, UPenn and Sloan are all great choices. You can't lose. Dr. Langren's set up at the NIH is also excellent. He is very interested in this disease entity and learning why smoldering myeloma converts to active myeloma in some patients but not others. If you are interested in participating in research regarding smoldering myeloma, the NIH would be a good choice.

Lastly, both at the NIH and other institutions, there are therapeutic trials for patients with smoldering myeloma, many of which are restricted to those who have high-risk smoldering myeloma. You can look at clinicaltrials.gov to see if Sloan, Fox Chase or UPenn are participating in any of these studies.

Good luck!

Pete V.

[mrsv118]

Re: Smoldering ...

by mrsv118 on Mon Aug 20, 2012 9:39 am

Dr Voorhees,

Thank you for your comments. I have contacted Dr landgren at NCI and have sent them my information. I have also contacted UPENN as well.

I have been a nurse for 27yrs and know how busy physicians are theses days. I am so impressed with the time you take to answer questions and relieve the anxiety of the folks on this forum (now including me! ). The work your do on here may be just as therapeutic as any medication you prescribe.

Thanks for being here!

[bloomingpeonies]

Re: Smoldering ...

by bloomingpeonies on Mon Aug 20, 2012 9:44 pm

Dr Voorhees...you continue to give with all your expertise, the best feedback!!

Thank you for caring and taking the time to respond.