multiple myeloma and thalidimide

POSITIVE. POSITIVE ? POSITIVE !!! I think I understand, positive. So here we go. As you all can see I am the negative person who is angry. Yes iI am the one !! Lets be positive..From my previous posts I seem to have a bit well a lot of negativity and maybe i should keep it to myself but this is not a private board. Ok positive  My brother has been told he has M/M "bang" ok bad news lets group together and support him Lets be proactive and give him support tell him there is hope. Then when we walk away from him we fall into numb state. Then we go to the doctor he says he is "very sick" yes we know that but what can we do?... well he has Multiple myeloma involving chromosome 13 "bang"  yep lets be positive..... ok doc what is your plan?. with hesitation  a long pause  and a blank stare he replies "we will put him on Thalidomide and dex. and hope for a remission....... Hope ! Hope ? "bang" ok back to being positive "oh my god " heart pounding hands sweating body trembling tears welling up....I say to myself "be positive Hold together" meanwhile he is in another room becoming weaker by the minute (he was as strong as a horse 7 weeks ago lifting weights and working out,happy as a lark) he is now receiving transfusions and a battery of pills i cant even pronounce, and so week he can hardly move. I will be positive yes I will I will be positive. I grab the doctor and head him off as he scurries away like a cockroach who just been blasted by sunlight. I say doc "you said you would not let him die !!" you told me that this is "treatable" He looks at me and i am shaking my tears are streaming down my face and i am shaking so bad that i am on the verge of collapse in a quivering voice I ask "chromosome 13 ?.........silence......chromosome 13???......"He said "a few months "BANG"  A FEW MONTHS !! I replied quickly with all the strength  i could  muster ... by now my heart is pounding like a drumroll You said to me earlier tha-dex takes three to four months to get a responce.......... Is this Checkmate?......He says "we have to see what happens with the thai-dex but M/M with chromosome 13 involved is much more difficult to treat" I then moved out of his way and my body,heart and mind went numb.I could not think as the hallway seemed to have extended for miles.What now ? where do we go from here? what do we do? I wander like a patient who escaped from the mental ward with no thoughts completely fallowing through. Positive you say, positive? I dont have the courage to tell my brother what i now know.I repeat to myself "if we have a response, if we have a response" so I try to be positive and say if there is a "if" in the equation  then there may be hope. After all other hopes have been striped away one after another maybe just maybe there can be a glimmer of hope so i build on that.That one hope. I collect myself wipe my face and stagger back into the room where my brother is reluctantly "giving blood" I am sure he could see right through my flush appearance and bloodshot eyes just like when I was a kid I used to think I was sneaking passed my parents when i was out with my friends !! You see the most positive person whos hope keeps getting dashed cant prevail. It just becomes so difficult to find a positive when giving constant negatives this turns into frustration and then anger. but after hearing all the "bangs"I will still try to support him be proactive and yes be positive ! I will not just stand by and allow this disease win. I will at the very least make it work very hard to take him and maybe just maybe there will a response and maybe a response sufficient enough for the bone marrow transplant and maybe he will be home with his family and I prey to god and keep hope and be positive. After all when at the point of conception one little swimmer makes it all happen through the most unfavorable unimaginable odds this little guy prevails !! so yes it is not over till its over !!! We will be at Yale new haven next week and we will be positive !  Ron

Hi Zazu1234 -- Perhaps your brother may be helped by the the 3 drug combo mentioned by Craig in his message today (12/12/07) -- its certainly worth asking his doctors.  The research over the past few years has been aimed at making MM a 'chronic' rather than a 'terminal' disease.  These 'new' drugs have been given to those of us who have had everything else and for whom there didn't appear to be any hope, but the knowledge gained from these trials has shown just how effective the drugs can be so now they are looking at giving them to the newly diagnosed.  This is fantastic for it means that we are much closer to a chronic disease situation.  Unfortunately because MM is so unique it is difficult to find one drug to cure all and therefore people need to keep trying to find the drug that works for them.  Some get good results from Thalid, others from Velcade, and those like me who respond to Revlimid.  I've had the lot, for varying lengths of time due to the particular side effects which I have experienced. However each of these drugs gave me more months than were initially told to me at the point of diagnosis.  Because I believe that the Revlimid is now starting to loose its potentcy for me I am starting to look for the next 'new' treatment.  Hopefully it will continue well into 2008 and I will find something new before this really fails -- but by taking a proactive approach I honestly believe that I can make a difference.  After all, I was the one to recommend Revlimid to my oncologist after I read all about it on CancerCompass and the net almost 2 years ago, and I've honestly had the best year of my life since diagnosis!!  Good luck for your brother -- with you advocating and supporting him I'm certain that you will make sure that he gets the very best of treatment.  Have a look at the Cancer Treatment Centres of America site -- I know that if I lived in the USA I'd certainly be going into my nearest hospital and listening to what they had to offer. Hang in there -- it is treatable (for nobody knows how long) and there is help for pain which makes it liveable.  My thoughts and prayers are with you, your familly and especially your brother.  Cath

hello cath/poppy You would not believe it but my brother has gotten multiple myeloma in one of the best places in the world !!We have the M.M.R.F almost walking distance,Sloan Kettering and Yale within an hour drive. and our proximity to New York city is profound !! We will be going to Yale today even though It is snowing at the rate of 2 to 3 inches an hour !! I feel that he should be on a more aggressive regimen than thal-dex and maybe they will change his RX to rev-val-dex (but they certainly do not need me to advise them !!)  I am a Real estate Developer and I know very little about medicine !!! BUT LEARNING FAST !!  thank you so much for people like yourself  and Kevin for supporting and responding to my desperate posts as they are very helpful !! I will let you both know how things go at Yale and if there may be something that may be on the horizon that may benefit you or him !! Many thanks  and best wishes. Stay well ,  Ron

Let me preface my note by telling you that my wife has MM and I myself just finished being treated for colerectal cancer. And I am very thankful that, despite all the nastyness connected with cancer chemotherapy , we were diagnosed in the last two years. Ten years ago we would have been both dead by now and this is all it counts today. Alive and with some quality of life. 

I understand and appreciate that everyone is entitled to his/her own opinion, but I find it disheartening to read such negative posting on a board where the average person looks for help and support. We go on the board often to read and learn from other patients and hope and wish the best for all who partecipate to it; while I may understand your mindset, I do share the viewpoint expressed by others that a more positive contribution would sure benefit the ones reading the board. 

In addition, your lack on knowledge about cancer chemotherapy may be one of the reasons why you come across so negative.

I have been in cancer research for 30 yrs discovering and developing cancer drugs, including one that has saved thousands of lives, so I do know a few things about cancer drugs. First of all they are all toxic agents by definition one way or another, that is why they work. You are right that Thalidomide was designed for morning sickness, but at much lower doses. You are right too to consider it a "nasty drug", but this is exactly why it works in MM. The reason why it was dusted off the shelves and studied in MM is because scientists understood why it had the side effects it had and thought it would have utility for MM and it does. And of the possible alternatives for my wife I supported our oncoligist 100% in the choice of Thalidomide as the first line therapy.

Today we cancer patients are blessed by the availability of so many new agents and a medical oncology community that is educated in the most advanced forms of treatment and has learned how to manage in the best way possible the side effect profile of these "nasty" drugs.

That does not mean that there are cases where patients do not respond or suffer to the extreme for the consequences of chemotherapy, but there is really no other choice.

It is not my place to discuss pricing of cancer drugs, it is not for this board. This board is much more for people looking for support and information about what to do, how to handle situations and seek additional help. It is meant to be an additional support for the ones with MM and their caregivers.