CancerCompass message board discussion started by zazu1234 on 12/8/2007 http://www.cancercompass.com/message-board/message/all,18732,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am very sorry to all of those who have this god awful disease but I have to say that this drug called thalidimide is a joke, my brother who is 50 has never reached remission (refractory myeloma) has been told to take thalidimide. Now help me out here... this drug costs 6500 for 28 days and if memory serves this is the bastard drug that caused birth defects in the late 50s and early 60s now here is the kicker, tell me that a pregnant woman would pay equivalent of 6500 bucks not to barf in the morning?? I doubt it ! What possess the drug companies to store this collection of  deviant chemicals in the first place and dream up another use for them.Is this the best we can do? Our sick government probably created diseases like myloma and aids as chemical warefare! and they escaped into the population. Dam it I am pissed but I will say one thing.We on this spinning rock will be called to answer to what we have done. and God will shake his mighty head and nature will kick us off this planet and she will heal herself. The only hope the next evolving life has what we do not and that is COMPASSION for one another. God bless everyone of you  zazu1234 Sat, 08 Dec 2007 00:00:00 GMT I agree with you- I am just reading about that drug and the defects it caused in the 70s.  Now, once they found it useful in myeloma, all of the sudden you have to pay so much.  My mom is in a process of diagnosing, and we are not sure if she has MGUS or MM...this is horrible.  So many ill people out there, and these pharmaceutical companies are playing chess with the lives of million people.  Bless all of you and good luck. Ivana84 Sat, 08 Dec 2007 00:00:00 GMT I can't thank you enough for raising discussion on this awful drug, Thalidomide.  I feel I have been batting my head against a brick wall for the past two years.My husband was diagnosed with MM in July 2005 and was persuaded by his Consultant to be part of a Trial using Thalidomide.  It matters not that I was not involved in the decision making, although I am left to cope with the consequences. I had my children in the 1960's and am fully aware of the damage caused to unborn babies and I can say unequivocally that I would have done my best to persuade my husband not to take this drug.When we eventually saw the documentation surrounding the potential side-effects (after the Trial had begun) we were aware that peripheral neuropathy may result.  Don't believe it.  My husband has suffered irreversible nerve damage to the extent that he has completely lost the use of his hands, as well as damage to the nerves in his arms, hands and feet.  He cannot feed himself or clean himself after using the lavatory.  Our lives have been destroyed.We are expected to be grateful that the MM is in remission, but my husband is in despair and constantly says that he would rather have had the time left to him without being as severely incapacitated as he is.  It is interesting that here in the UK the drug has been acquired by a Venture Capitalist (Mr Pat Mahaffy of Pharmion) who is applying to the EEC Licensing Committee to get the Rights to make the drug widely available on prescription (and of course the cost would be borne by the tax paying public, not the patient or any Insurance Company).  I am doing all in my power to put a stop to it.Of course, my husband signed documentation acknowledging that he would have no recourse to the Law should he suffer any harm because of his use of this obscene drug.  We are now on the verge of losing our home;  I am in the pits of depression because I can no longer cope with the cleaning/cooking/gardening/maintenance/caring.  Where is Mr Pat Mahaffy now?      Lucymac Sun, 09 Dec 2007 00:00:00 GMT Anyone taking Thalidomide should also take at least 9 grams of fish oil per day to counteract the neurological effects. My wife was on Thalidomide for 1 year with no neuropathies. Unfortunately, it did not reduce her myeloma enough to continue and she has now started Velcade. The side-effects of the Velcade, for her, are much, much worse. However, she has the 13 chromosome ( = worse outcomes) and Velcade is the drug to use with that group of patients.Regards,Craig Persel  photog Sun, 09 Dec 2007 00:00:00 GMT dear Lucymac My heart pounded when i read your reply !!  I have to give full care to my grandmother who is 90 and she is very well but I could not imagine what i would feel if i had to care that way for my wife who has been my best friend and the love of my life for 30 years. Not that i would not do it, but because she shouldnt be in this condition !!! I have been devastated since my brother was told he had multiple myeloma just 6 weeks ago. I am only 16 months younger and he was always much stronger (physically) than I !! now I am watching him die. We live in Connecticut with Sloan Kettering and Yale hospitals within a short drive. I will be taking him to Yale on Monday December 9 2007 Doctors have told him and I at Danbury Hospital so many different things that we are totally confused ! They told me and his wife he has now 2 months to live and we should take this Thalidomide and he should have a response.Well when you are in the "care" of these twisted drug slingers and you have no idea what to do you will sign anything to stop the advancement of this life sucking disease. My frustrations are drugs like Thalidomide that are worse than the disease itself.The drug companies are so corrupt and so greedy that they are more interested in making "home run"drugs like Oxycontin that addict the user and anyone else who touches it.The addictive qualities are engineered and the bastard doctors prescribe it like candy!! Well there is not enough people who have M/M to bother the chemical manipulators to "invent" anything that could be used safely There is just not enough money in it.It is very obvious just look at what they are doing with AIDS They are all having a ball with it !!I will never give up on my brother I will do whatever I can and I feel for you and being healthy sitting here on my computer and watching the "system" work its black magic I am appalled.!!! The almighty dollar wins again !  Thalidomide has kept your husband alive and this is a positive outcome and will be written up as a success but they will NOT say that it was at the expense of his body and both of your dignity. GOD please look at what we are doing. God gave us "free will" and he should not have. Please stay strong and somewhere somehow there has to be something that has to be positive !!  PS my grandmother was prescribed Vioxx and it nearly killed her.and you never know maybe we will see that one for flatulence in the future !!!   stay well !! for your husband and yourself !!! zazu1234 Sun, 09 Dec 2007 00:00:00 GMT Thank you Photog and Zazu.  I think this is the first time that I have actually wept, and now feel guilty and selfish for doing so!  My husband is going to start taking the Fish Oil today; it can do no harm and can only do some good.  Unfortunately the damage is already done.Zazu - if your brother has only a short time left, I beg you not to give him the additional burden of peripheral neuropathy.  Although not having experienced it personally, my husband describes it as 24hr severe 'pins & needles' in his hands/arms/legs and feet.  There is no respite from it and trying to get any rest or sleep is almost impossible..Why are they recommending Thalidomide now at this late stage?  It sounds to me like another experiment and a way of pouring even more dollars into the coffers of the owners of the drug.  I am heartbroken every day.  We have been together 42 years - since we were teenagers.  I am certain that should anything similar befall me, then there is no way that the medical profession will be able to practise their black arts on me!I am thinking of you and hoping that you can give some strength to your lovely brother.   Lucymac Sun, 09 Dec 2007 00:00:00 GMT My husband was diagnosed September 2006 with stage 3 mm. he passed away October 15, 2007. As sick as he was his attitude was always positive. He always talked like he had many tommorrows ahead. He was avery courageous man. i will begin with the thal/dex and the radiation. He not only got the nueropathy but the radiation made swallowing difficult. Thanksgiving 2006 he couldn't even eat. He remained on this potion untill he had his stem cell transplant in March 2007. He was pretty close to remmission at this point. He did extremly well with the transplant except it didn't work. He was worse in August 2007 then before transplant. He developed huge playsmacytoma's on both arms. I look at his pictures and see a big stong man reduced to skin and bones, He not only lost weight but at least 3 inches in height. We had another option that could buy him some time or kill him. By the time he went in the hospital October 1, 2007 he was so run down and tired. All he could do was sleep. He was unable to sleep in a bed because of the pain. I failed to mention the thursday before they tried to put a port in but failed and had to abort it because he bled out. He was to get a pic line on that Monday when he was admitted but they were to busy. Finally on Wednesday the doctors went to the administrator and it was put in. The chemo he was to get was quite radical and had numerous side effects. It was three different types and on top of all that the thal/dex too. Ironically when they started it he sparked up and within 2 days the playsma cyotoma's flattened. You would think this was a good sign. We were very optomistic. This was very short lived. The kidney's started to fail. They pumped him with fluids. He gained 42 pounds in 5 days. His legs were so swollen he could hardly walk. He then started having anxiety attacks, so they thought. He was moved to another floor and was now on oxegen. He was still having the breathing problems. Along with this he was getting transfussions and platletts. My daughter came to the hospital to stay with him so I could go home and get cleaned up. This was after beuing in the hospital about 10 days. He was getting a transfussion when I left about midnight. They were changing bags for more blood and he coded. She called and I flew back to the hospital. He survived this and 2 more times that night. Of course he was now on a ventilator. 24 hours later he was off the ventillator for 7 hours and then the breathing problem again. So now he was back on it again. They wanted to drain his right lung because they said he was drowning on the fluids. Kidneys were working now though. They said he would be off the ventilator soon. Not true they now had to drain the other lung put a central line in and a heart monitor. They wanted a better reading on his blood pressure. The doctor came out with a smile on his face. He said everything went well. AT some point the tilted his head back to try to get a better reading on his blood pressure and he aspirated on stomache gases but they said it was under control. Apparently not because later they recommended taking him off all meds because if he recovered he would never leave the hospital and would have to have a trach eventually. That is one thing I knew he never wanted.He alreadywore hearing aids and couldn't hear well with them. He couldn't continue the chemo which was to happen every month for 4 to 6 months. His blood pressure was 30/18 and he was still somewhat coherant 4 hours off meds. I couldn't pull the ventillator. The nurse from his cancer treatment center came in and she told me he wasn't takuing one breath on his own.She said they could reduce the oxyegen and see if he could breath on his own. He passed very quickly with the love of his whole family surrounding him. I held his hand, We also were married since we were teenagers.We almost made it to 41 years. I also wnated to mention that he did one round of velcade in August but could not continue because he counts got to low. They said his disease was very aggressive. The mm didn't get him though. His death certificate listed in this order septic shock respitory failure and pnuemonia. We all know without an immune system any one of these would do him in. They knew this before he died. Cancer is a horrible disease and we had a horrfic year but I thank God he gave us that year. I will always cherish and treasure our time together. I know it seems like we went through a lot but I do feel they did everything they knew to do for him. I feel in time they will come up with something better. Unfortunately it didn't happen for us. Never give up, Sometimes I feel a little guilty about the dicisions I had to make at the end but in my heart I know I did the right thing for him. God just gave us some bonus days after he coded. Had he been at home that would've been it. We got to say our goodbyes. Just be strong in your journey. I just had to tell my story in hopes that someone else can be helped by it. We made the decisions to continue the treatment. We could've said no more but we chose to keep trying. Even with the pain my husband was in I want to say he lived his life to the fullest almost to the very end. God bless Linda and he was Mike downtown Mon, 10 Dec 2007 00:00:00 GMT Thank you Linda for sharing your journey with Mike with all of us.  From a patients perspective I believe that you did everything possible and I'm sure that he appreciated it.  The medical profession and the drug companies are doing their best to help us and, unlike the negative people on this board, I believe we are blessed to have such wonderful people working on our behalf. I'm sorry that you have lost Mike, but like you my husband and I are grateful for every minute that we can get with the latest treatments and medications -- and we are trying to make the most of the time we have.  Thanks once again for sharing with us -- I know that your message has helped me.  My prayers are with you, Cath. poppy/cath Mon, 10 Dec 2007 00:00:00 GMT Poppy/CathRight after my husband passed away I wrote a long post back to you but it never went through. I lost it somehow and then I just needed some time to digest everything, I feel a lot stronger now and I am ready to help anyone who wants help. Even though the journey for Mike and I has ended, i still want to learn everything I can and watch the progress of others until one day there will be a cure. I can second guess what could have been but in my heart I knew we were coming to the end but not without a fight. I think God gave us those extra days to say our goodbyes.Death doesn't have to be ugly but rather the celebration of life as we know it on this earth. Each new treatment opens new horizons to the cure and also buys a little time. I just wish his wasn't so aggressive and we had a little more time, I wrote my story to help. I thought it was needed on this particular message line. Even though we didn't get exactly what we hoped for. we remained positive throughout and lived each and every day to the fullest. Mike was in tremedous pain all the time but he also fought to live. I also wanted to add that are health care people were wonderful and compassionate and if any mistakes were made they were not intential. It's very difficult to cure something without an immune system. The drugs do cause side effects but without them there wouldn't be any survival rate I guess you could compare this to road rage, I told my husband when he exhibited this trait that people pull out in front of you because they want you to hit them. Like anyone wants there car wrecked. It's not done on purpose just like the doctors don't want to hurt you either. They want a cure. Just a thought.Linda downtown Tue, 11 Dec 2007 00:00:00 GMT I agree with you Linda, and I do wish that others could see this point of view and not blame others or the system for things that go wrong.  As far as I'm concerned, most people try to do the best that they can in everything that they do but unfortunately things can go wrong, much to everyones distress.  They don't start out to have this happen -- its just what the word 'accident' really means.  If one starts from a positive perspective and tries to see the good in the world rather than the negative or bad, then hopefully it will be a better place for us all. Thanks again for your messages.  This holiday season will be a difficult one for you, but fortunately you will have the special memories that you and Mike made in those last few months.  My thoughts and prayers will be with you and yours during this Christmas. Cath poppy/cath Tue, 11 Dec 2007 00:00:00 GMT 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 zazu1234 Tue, 11 Dec 2007 00:00:00 GMT 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 poppy/cath Wed, 12 Dec 2007 00:00:00 GMT 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 zazu1234 Thu, 13 Dec 2007 00:00:00 GMT 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.   speedin100 Sun, 23 Dec 2007 00:00:00 GMT