Help

My husband is 44 & was diagnosed in early march,it’s been a roller Coster so far, little answers, and need some support from people who have been there

great first post CJ. It's easiest if you post your questions so people can respond to them. You came to the right place.

Yes you are at the place for help, being a patient I can give you much insight. I do not have he time right now but will add more later. How was hubby diagnose, does he have bone breakage or kidney failure, and what are they treating him with drug wise?

He was diagnosed march 3 , started with pain which we thought was sciatic, after blood tests & bone marrow biopsy then found out it was multiple myeloma . He is on velcade injections, decadron & thalimide , suppose to go tues to get the ball rolling on stem cell transplant , it’s now affecting a nerve going to the bladder.



rodney said:

Yes you are at the place for help, being a patient I can give you much insight. I do not have he time right now but will add more later. How was hubby diagnose, does he have bone breakage or kidney failure, and what are they treating him with drug wise?

Hi, I hope he is tolerating the drugs well, as he is young my guess is that he is doing ok. You need to keep a finger on the m-protein level, this is the marker for mm and will be a good gauge of the response to therapy. There are several other markers IGG and light chains, all are done with blood tests. Does he have any tumors, I have not so my experience with these is minimal. You guys have a long road to travel, there are many ups and downs, but once you are past the diagnoses it is mostly ups. This is non curable for most of us, including me, however it is almost at a chronic level, I have been under treatment for almost 2 years, recently completed a stem cell transplant and am on maintenance therapy for the next year. I would highly recommend starting your own blog here and trying to update it on a regular basis, it really helps in the future to look back and see how far you have come, the hills just don't look quite as high when you compare them to the ones already climbed. MM has seen some of the most effective research and release of new drugs of any of the cancers, check out several post on here. I think they are blog posts, they just released 2 new drugs in the last 6months, My stem cell doc told me one was 10 times more effective than any before it. I hope to save it in case I need a silver bullet. Once you find out what his m protein number is let me know as that will forecast how things are done, although with other organs involved they may push up the time table for a stem cell, just to relieve some of the concerns as this is much more intense, I had mine on Jan 16 or so this year, went back to work on 2-18 this year. Now I am somewhat unique as I run a big building and set my own hours and am accountable for my actions but am freer with my time, it was not that bad. Went on a 1 mile walk on the flat and level on 2-20-13 and felt ok. There is no real time table or exact process with this, expect treatment for a long time with the lucky ones seeing a break at some point. Life can be mostly normal, the biggest impact for me has been energy, bowels and time for the appointments, ps expect sleep issue's. Here is another site to take a look at, it has lots of clinical information and can really help with the fears that come with the normal searches( don't believe most of what you read) I find that the beacon has negative items and positive , but knowing both can help you cope, always take the negative with a little skepticism as it is mostly short sighted and not totally accurate . We can all win, some just need to work harder or longer. I have been traveling this road for so long I no longer know a life without cancer, as of today almost 20 years. I just don't like seeing it effect others or make them sad. Take a look and start your blogs and please ask me about and let me know about your concerns, I will help in any way I can. http://www.myelomabeacon.com/

May God Bless and care for you. And no I do not have any ties to the beacon, just found it through here

Rodney

One more thing, look under blogs and read My Journey with a monkey on my back it really does help explain why and how we all do what we must to cope and maintain sanity. I wrote it on a Friday night when I could not sleep, one of the side effects of dex. . Bear with your hubby as sometimes you can not understand what he feels emotionally or physically, it can change daily., its Friday again, been up since 4am and still can't sleep. I know it is hard on you as your world revolves around him, but please don't get mad, it really is not any ones fault, its just that some of us must be challenged to reach a higher level of awareness of the world around us. Believe it or not there are people who consider all the facts and find this life changing event to be positive. I know for me it has been when all things are considered. Most folks see every day as a time period- not an event. I have learned to love them all no matter how bad they are. When they are just an event you exist but never really live. A persons life is a story, one to be remembered, one to show a positive effect on as many people around you as possible. Cancer and the realization that we are all terminal can be the event that starts us to really live.

Ps I worked with my brother today, life is Good

Rodney

Thanks Rodney
It’s great to read something positive.
Im recovering from a stem transplant done march 22,13 and have just started to read Blogs from other M M patients … I stopped reading them because most of the stories are negative or depressing …so thanks again for some encouragement />


rodney said:

One more thing, look under blogs and read My Journey with a monkey on my back it really does help explain why and how we all do what we must to cope and maintain sanity. I wrote it on a Friday night when I could not sleep, one of the side effects of dex. . Bear with your hubby as sometimes you can not understand what he feels emotionally or physically, it can change daily., its Friday again, been up since 4am and still can’t sleep. I know it is hard on you as your world revolves around him, but please don’t get mad, it really is not any ones fault, its just that some of us must be challenged to reach a higher level of awareness of the world around us. Believe it or not there are people who consider all the facts and find this life changing event to be positive. I know for me it has been when all things are considered. Most folks see every day as a time period- not an event. I have learned to love them all no matter how bad they are. When they are just an event you exist but never really live. A persons life is a story, one to be remembered, one to show a positive effect on as many people around you as possible. Cancer and the realization that we are all terminal can be the event that starts us to really live.

Ps I worked with my brother today, life is Good

Rodney