CancerCompass message board discussion started by Bayshore on 1/6/2008 http://www.cancercompass.com/message-board/message/all,19433,0.htm Mon, 13 Oct 2008 00:00:00 GMT Mon, 13 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Deny is in terrible pain in her legs and feet.  She has stopped the velcade due to the nerve pain she is experiencing.  The lycria is making things worse for her.  She hasn't been on any chemo for over a month now.  She says the Velcade has caused much of the nerve damage.  I am hoping the Dr. will prescribe the Rev/Vel/Dex.  She has found a lump in her neck and a small one in her leg.  She also has the mass in her pelvis and groin that they are unable to remove and the radiation did not work.  The MM has moved into both tibias.  I am so worry and fearful of the unknown at this point.  My sister means the whole world to me.Thank you all for your support.  We still havent recieved the path report taken from one of the lumps removed from her back yet. Bayshore Sun, 06 Jan 2008 00:00:00 GMT  On 1/6/2008 Bayshore wrote:Deny is in terrible pain in her legs and feet.  She has stopped the velcade due to the nerve pain she is experiencing.  The lycria is making things worse for her.  She hasn't been on any chemo for over a month now.  She says the Velcade has caused much of the nerve damage.  I am hoping the Dr. will prescribe the Rev/Vel/Dex.  She has found a lump in her neck and a small one in her leg.  She also has the mass in her pelvis and groin that they are unable to remove and the radiation did not work.  The MM has moved into both tibias.  I am so worry and fearful of the unknown at this point.  My sister means the whole world to me.Thank you all for your support.  We still havent recieved the path report taken from one of the lumps removed from her back yet.I'm repeating myself from past posts, but ... taking 5-9 grams of fish oil per day seems to reduce or stop neuropathies (e.g. nerve pain) while taking Thalidomide or Velcade.The very best to you and your family.Craig   photog Sun, 06 Jan 2008 00:00:00 GMT I'm so sorry for your sister Susan!  I did so hope that she would have had the positive response to Lyrica that I had -- @#%!  Do you know why they seem to have been so reluctant to prescribing Revlimid?  I agree with Denys that the Velcade has worsened the neuropathy -- it did the same to me, but the Lyrica was fast acting and helped so much -- I couldn't continue because of cost, but I had such hope for her. This disease is SO individual which makes diagnosis and treatment so difficult for everyone!  Why do you want Denys to go on Rev/Vel/Dex if the Velcade is causing so much problem?  I do hope that her doctors don't delay and change her meds as soon as possible so that she can get some relief.  Is she able to be on durogesic patches for pain? Did the previous radiotherapy to her leg work?  Surely they can find something to help!  My thoughts and prayers are with you both.  I know how frustrating it is to not be able to make things happen faster - I should have gone to hospital over the weekend, but couldn't face waiting in emergency for hours just to have a drip put in (because of an allergic reaction to a massive dose of antibiotics) and took the chance of self doctoring and sipping mouthfuls of water to make up for what I was losing by continual vomiting. It was a big risk, but the frustration of waiting was more than I could bear. Please hang in there, but keep being a squeaky wheel and make sure they hear your concerns.  And don't forget your own health in all of this -- you are very important to Denys.  I wish I could do something specific, but know that you are constantly in my thoughts and prayers.  Cath poppy/cath Mon, 07 Jan 2008 00:00:00 GMT I apologise Susan -- after reading your note to Alexis I realise that I had forgotten much of the treatment that Denys had undergone -- I can only put it down to chemo brain and short term memory loss.  A psychologist friend has told me that physically this has happened during my really bad patch after Velcade when I ended up in hospice for a month and lost 50kg - no nutrition for 3 months except peg feeding -- she feels that this had a direct effect on short term memory loss.  Anyhow, I see that Denys has had Revlimid and radiotherapy to no avail in the past -- I've been trying to find even newer drugs still in clinical trials.  There is one that they are trying here called LBH 589 put out by Novartis -- have you heard anything about it over there?  Like all of these drugs, because of the individuality of people the drugs are only good for certain people, but maybe there is something in the pipeline. Like you, I'm going to keep on trying until that magic pill does arrive -- and it will, and hopefully in my lifetime!!  Sorry about asking things that I should have remembered -- I sincerely apologise.  Cath poppy/cath Mon, 07 Jan 2008 00:00:00 GMT The Multiple Myeloma Research Foundation lists 318 clinical trials for MM.You can find them listed here ...http://www.multiplemyeloma.org/clinical_trials/4.09.php?n-st ://www.emergingmed.com/pub_Content_Rel_Disease.asp?dis_sys_id%3d161%26sub_dis_sys_id%3d265%26contenttype%3dCTRIAL~~~G!03DC74D02213!LYOMwg4%252b3NNzpuUVR3A%3d~emed-trials~~~@http://syndicator.www.emergingmed.com/MMRF/emergingmedtrials Regards,Craig  photog Mon, 07 Jan 2008 00:00:00 GMT Let's shorten that link up ...http://www.multiplemyeloma.org/clinical_trials/4.09.php Craig  photog Mon, 07 Jan 2008 00:00:00 GMT Hi Craig -- This sounds like a great site, but is it only for people in North America?  I tried to log on and it asked for my zip code and then it followed up with questions regarding lung cancer.  I've sent an email to them to find out the perameters, but the concept is great!  You are such a fund of information!  This is the obvious way of keeping one step ahead of the treatment that may be starting to fail -- I sincerely hope that I will be able to access it.  Many thanks for your help,  Cath poppy/cath Mon, 07 Jan 2008 00:00:00 GMT  On 1/7/2008 poppy/cath wrote:Hi Craig -- This sounds like a great site, but is it only for people in North America?  I tried to log on and it asked for my zip code and then it followed up with questions regarding lung cancer.  I've sent an email to them to find out the perameters, but the concept is great!  You are such a fund of information!  This is the obvious way of keeping one step ahead of the treatment that may be starting to fail -- I sincerely hope that I will be able to access it.  Many thanks for your help,  CathClick on the "view all trials" tab and it will show all clinical trials for myeloma. It probably is limited to North American trials. I run across Europeans - and I think Australian - now and then, but haven't yet found a central source of trials like this one for non North American trials. If I do I'll certainly post it.Best.Craig   photog Tue, 08 Jan 2008 00:00:00 GMT The MMRF is about 15 min from us in Norwalk CT. They are very helpful and willing to help anyone even if it is a question . The staff is very knowledgeable and friendly. If you have any questions or suggestions they are all ears. Do not hesitate to contact them !!! good luck  Ron zazu1234 Wed, 09 Jan 2008 00:00:00 GMT  On 1/7/2008 poppy/cath wrote:I apologise Susan -- after reading your note to Alexis I realise that I had forgotten much of the treatment that Denys had undergone -- I can only put it down to chemo brain and short term memory loss.  A psychologist friend has told me that physically this has happened during my really bad patch after Velcade when I ended up in hospice for a month and lost 50kg - no nutrition for 3 months except peg feeding -- she feels that this had a direct effect on short term memory loss.  Anyhow, I see that Denys has had Revlimid and radiotherapy to no avail in the past -- I've been trying to find even newer drugs still in clinical trials.  There is one that they are trying here called LBH 589 put out by Novartis -- have you heard anything about it over there?  Like all of these drugs, because of the individuality of people the drugs are only good for certain people, but maybe there is something in the pipeline. Like you, I'm going to keep on trying until that magic pill does arrive -- and it will, and hopefully in my lifetime!!  Sorry about asking things that I should have remembered -- I sincerely apologise.  CathHi Cath,Denys is still doing awful.  My parents are there with her in Tampa.  Denys is still not on any Chemo.  She went for blood work today and "Supposedly" she will start Vel/Doxil on Friday.  My brother-in-law says that this is the year she makes some kind of recovery, or hospice would be her next step.  My brother in law said my sister Denys knows she is now terminally ill.  The pain in her leg is so horrible.  My mom is her caregiver right now says my poor sister is in agony.  She is unable to watch her and breaks down and cries allot.  I quess my mom is coming to the realization on just how bad my sister has gotten.  Denys will not be returning to Little Rock as planned on January 26Th. She can hardly walk around or bearly sit.  As I have explained the Myeloma has gone into both tibia's but my sister says that it is only her left leg that hurts so much.  Just a few weeks ago my sister told me she would not let the Myeloma take her soul.  All of a sudden since being home in Tampa she is very ill now, and from what I understand through one of her friends who spoke to my sisters Dr. is that he is not very optimistic for Denys winning her battle.  Hospice is a scary name , didn't you tell me you were in hospice for a while ?? I explained to my brother in law that he better let me know when or if her time comes because I have so much to tell her especially that I love her with all my heart .  I will keep you posted but so far everything is still the same if not getting worse.  Hopefully, when her Dr. moves his ass and gets her back on some kind of chemo she will be better then she is right now.  She just sleeps all day from all the pain meds and hardly wants to eat. I really feel bad for my parents to , as I explained they are both 78yrs old, not spring chickens anymore.Be well , Susan  Bayshore Wed, 09 Jan 2008 00:00:00 GMT Dear Susan~~  I am so sorry to hear how bad Denys has become.  Thankfully she has her mother with her, for I can't tell you just how important it is to have someone who loves you by your side when you are at your lowest -- just to BE there for you.  I was so fortunate to have Bob and regular visits from all my kids as well as loving friends.  I am sure that Denys knows how much you love and care for her, but I'd agree that you shouldn't leave it too late to face her and tell her again and again.  Yes, I did end up in hospice after going to my lowest after Velcade clinical trials -- I ended up in hospital for two months not eating or drinking (they peg fed me) and then decided that hospice was the only place left for me.  Hospice was beautiful - I had a lovely room to myself, anything I wanted (wasn't much) was found, lovely caring people worked there, and the pain medication made me comfortable -- I coudn't have asked for more. As I said, I was surrounded by people who loved me and visited by many others -- that was about 18months ago.  I had lost over 50kg, didn't eat or drink, and basically slept most of the time.  I have very few memories of my MONTH there, except that my husband constantly encouraged me to eat and drink every time I woke for even a minute -- even if only a mouthful, and found novel things that might tempt me -- from a piece of fruit out of season, a smoothie, unusual teas,  to bringing me corn soup from the local chinese take away! It didn't matter what it cost or whether it had to be thrown away, he just kept perservering.  And because of my love for him I KEPT TRYING!!  Eventually I decided that I didn't want to be in this lovely spot -- but away from my home -- any longer and asked to be discharged home.  The local pallative care nurses set up our sitting room as my bedroom - complete with comode chair at the end of the bed.  By the time I came home I could no longer walk or even get up off the bed to the chair without Bob's help.  And help he did, by lifting me on and off the chair as needed.  All of the hospice staff said GOODBYE to me, believing that I was going home to die.  Well, the rest is history.  Bob continued to encourage me - a sip or bit at a time, and a dear physiotherapist friend gave us a set of exercises for me to do in bed to try to strengthen my legs, while her husband built a ramp at our back door so that Bob could put me in a wheelchair and wheel me out into the garden.  Very SLOWLY I began to regain my appetite - it has never come back to anywhere near what it was, but it has gradually improved.  My daughters massaged my legs and feet with lotions and oils regularly, my sons came and made me laugh, while my grandchildren chattered and asked their usual questions!!  All in my own environment.  And I'm sure that all of this brought me back from the edge.  On top of it all, a couple of months later I responded to Revlimid and my paraprotein which had reached 90 dropped over the next three months to 7. Truthfully speaking, this is a 'miracle' story, for entry to hospice doesn't usually end this way and all involved can hardly believe it, even now.  I do put it down to all the selfless support that was given to me -- together with the constant encouragement and prayer by many.  I just wanted you to know that it CAN happen, and I pray that if Denys gets the proper treatment that she needs, that it can happen for her too.  From my perspective the most important thing was really knowing how much everyone was working for me and wanting to reciprocate for them.  I would eat and drink knowing that I would vomit, rather than say no. I wanted to please them so much -- it really mattered to me.  And they NEVER gave up, just kept trying.  I know now, for they have told me, of the tears they shed outside of the room.  Tears of frustration, tears of fear, tears and more tears -- but they just kept trying -- AND SO DID I!!  I'm so glad that I did.My thoughts and prayers are with you, Denys and your family.  If she were my sister and they were considering hospice I would be making arrangements to be there too -- for as long as I could manage it. I would be going for my sister AND for my mother as well as myself.  But that's just me, after my own experience.  I know how important it was for me to SEE those loved ones and FEEL their presence. You must do what is right for you and I know that you have the strength and understanding to support them all through this difficult time.  Via con dios Susan.  Cath poppy/cath Wed, 09 Jan 2008 00:00:00 GMT Thanks Craig, I have been in touch with one of clinical nurses involved at the site, and yes it is specifically for North Americans.  What a wonderful opportunity for all of you!  Hopefully other countries will follow their lead and set up similar services.  I do believe that newly diagnosed people are now looking for more information BEFORE they even start treatment as well as seeking info on developments now in the pipeline.  I would certainly advise anyone to look at sites such as this one to start them off, giving them a lot to consider before they take sometimes irreversable steps.  I know that I would have been a lot better off if I had done this, but at least I have learned in hindsite and can advise others.  This is certainly not a put down of the medical profession, but because this is such an individual disease no one person can possibly have all the answers.  Fortunately we all have access to so many reliable sources -- even if its just getting info to ask our doctors about and gain a greater understanding about MM. Having people like yourself, Kevin and Paul adds even more to our collective 'head' - we are so lucky!  Hope its cooler there than it is here today -- 40C!! Thank goodness for air con!  Cath poppy/cath Thu, 10 Jan 2008 00:00:00 GMT  On 1/10/2008 poppy/cath wrote:Thanks Craig, I have been in touch with one of clinical nurses involved at the site, and yes it is specifically for North Americans.  What a wonderful opportunity for all of you!  Hopefully other countries will follow their lead and set up similar services.  I do believe that newly diagnosed people are now looking for more information BEFORE they even start treatment as well as seeking info on developments now in the pipeline.  I would certainly advise anyone to look at sites such as this one to start them off, giving them a lot to consider before they take sometimes irreversable steps.  I know that I would have been a lot better off if I had done this, but at least I have learned in hindsite and can advise others.  This is certainly not a put down of the medical profession, but because this is such an individual disease no one person can possibly have all the answers.  Fortunately we all have access to so many reliable sources -- even if its just getting info to ask our doctors about and gain a greater understanding about MM. Having people like yourself, Kevin and Paul adds even more to our collective 'head' - we are so lucky!  Hope its cooler there than it is here today -- 40C!! Thank goodness for air con!  CathI contacted them also and they directed me to www.clinicaltrials.gov for international clinical trials. The support you received was/is so fantastic. I hope that I can/will provide even half of that for my wife. We've had a very unusual warm spell here (15c), but it will soon be back to -10c and snow. :-)Stay cool.Craig   photog Thu, 10 Jan 2008 00:00:00 GMT  On 1/9/2008 poppy/cath wrote:Dear Susan~~  I am so sorry to hear how bad Denys has become.  Thankfully she has her mother with her, for I can't tell you just how important it is to have someone who loves you by your side when you are at your lowest -- just to BE there for you.  I was so fortunate to have Bob and regular visits from all my kids as well as loving friends.  I am sure that Denys knows how much you love and care for her, but I'd agree that you shouldn't leave it too late to face her and tell her again and again.  Yes, I did end up in hospice after going to my lowest after Velcade clinical trials -- I ended up in hospital for two months not eating or drinking (they peg fed me) and then decided that hospice was the only place left for me.  Hospice was beautiful - I had a lovely room to myself, anything I wanted (wasn't much) was found, lovely caring people worked there, and the pain medication made me comfortable -- I coudn't have asked for more. As I said, I was surrounded by people who loved me and visited by many others -- that was about 18months ago.  I had lost over 50kg, didn't eat or drink, and basically slept most of the time.  I have very few memories of my MONTH there, except that my husband constantly encouraged me to eat and drink every time I woke for even a minute -- even if only a mouthful, and found novel things that might tempt me -- from a piece of fruit out of season, a smoothie, unusual teas,  to bringing me corn soup from the local chinese take away! It didn't matter what it cost or whether it had to be thrown away, he just kept perservering.  And because of my love for him I KEPT TRYING!!  Eventually I decided that I didn't want to be in this lovely spot -- but away from my home -- any longer and asked to be discharged home.  The local pallative care nurses set up our sitting room as my bedroom - complete with comode chair at the end of the bed.  By the time I came home I could no longer walk or even get up off the bed to the chair without Bob's help.  And help he did, by lifting me on and off the chair as needed.  All of the hospice staff said GOODBYE to me, believing that I was going home to die.  Well, the rest is history.  Bob continued to encourage me - a sip or bit at a time, and a dear physiotherapist friend gave us a set of exercises for me to do in bed to try to strengthen my legs, while her husband built a ramp at our back door so that Bob could put me in a wheelchair and wheel me out into the garden.  Very SLOWLY I began to regain my appetite - it has never come back to anywhere near what it was, but it has gradually improved.  My daughters massaged my legs and feet with lotions and oils regularly, my sons came and made me laugh, while my grandchildren chattered and asked their usual questions!!  All in my own environment.  And I'm sure that all of this brought me back from the edge.  On top of it all, a couple of months later I responded to Revlimid and my paraprotein which had reached 90 dropped over the next three months to 7. Truthfully speaking, this is a 'miracle' story, for entry to hospice doesn't usually end this way and all involved can hardly believe it, even now.  I do put it down to all the selfless support that was given to me -- together with the constant encouragement and prayer by many.  I just wanted you to know that it CAN happen, and I pray that if Denys gets the proper treatment that she needs, that it can happen for her too.  From my perspective the most important thing was really knowing how much everyone was working for me and wanting to reciprocate for them.  I would eat and drink knowing that I would vomit, rather than say no. I wanted to please them so much -- it really mattered to me.  And they NEVER gave up, just kept trying.  I know now, for they have told me, of the tears they shed outside of the room.  Tears of frustration, tears of fear, tears and more tears -- but they just kept trying -- AND SO DID I!!  I'm so glad that I did.My thoughts and prayers are with you, Denys and your family.  If she were my sister and they were considering hospice I would be making arrangements to be there too -- for as long as I could manage it. I would be going for my sister AND for my mother as well as myself.  But that's just me, after my own experience.  I know how important it was for me to SEE those loved ones and FEEL their presence. You must do what is right for you and I know that you have the strength and understanding to support them all through this difficult time.  Via con dios Susan.  CathHi Cath,  How are you feeling?That was the most touching story I truly have ever read.  You definitely have a wonderful way with words.  I hope you don't mind but , I did copy and paste what you wrote to send to my sister.  The hospital made another mistake and now the chemo Vel/Doxil is delayed untill Monday.  Needless to say we are livid.  My sister on the other hand is making excuses and is not getting better yet. Today she went for 2 bags of blood I am assuming to get ready for this new cocktail.  I wanted to ask you a question.  If the Velcade was only keeping my sister's blood work good but wasn't getting the MM in any kind of remission.  Why would the Dr. continue with the Velcade and add Doxil?  Another question I want to ask is if Denys was first put on Revilimid and it stopped working at 90% could he put her back on that along with the Vel/Dex combination.  Denys was really responding the Revlimid.  This chemo did better for her then the Stem Cell Transplant.  Also my mom mentioned that she thinks the bone builders the Dr. currently has Denys on could be contributing to her bone pain.  In your opinion is this possible?I will keep you posted.  I want to tell you again it was a very touching letter you wrote me.  I actually teared up reading it.  You are truly remarkable.God Bless you, ps. you remind me of my sister Denys in allot of ways.  Not because you both share a diagnosis of MM. but, because she writes very well just like you do.  She also is a strong person like you.  That is another reason why I wanted to share you "Miracle Story" with her.   Bayshore Fri, 11 Jan 2008 00:00:00 GMT Hi I am returning here after a year in abscentia...I am one of the most fortunate people in the world to have survived end stage MM. My last check up 3 weeks ago had me 100%.  I did 98% natural but it does not work for everyone.  However I have been reading all these posts and my heart goes out to you all as I knew pain like no other.  As I did NOT take chemo I did not suffer the neuropathy.  A lot of my fellow compatriots have.  I noted a post on Fish Oil that worked well.  Often natural remedies are needed to keep the body in check. Chemicals can only do so much.Some of you need to check with Cancer Treatment Centers of America as they offer alternative treatment along with recognized therapies.  I am sure they have someone to help guide you and would have great suggestions on neuropathies.  http://www.cancercenter.com/  All MM patients should stay away from sugar, take B vitamins to lessen the neuropathy especially the B6 another huge immune system booster is CoQ10 at least 500 mgs liquid caps daily.  Epicor. Go read the history of Epicor and you can buy it inexpensively at Swansons Vitamins.Body Mind and spirit are things that heal, laughter, support , getting rid of pain.  I wish you all the best and would love to see you all get well.On 1//2008 Bayshore wrote: On 1/9/2008 poppy/cath wrote:Dear Susan~~  I am so sorry to hear how bad Denys has become.  Thankfully she has her mother with her, for I can't tell you just how important it is to have someone who loves you by your side when you are at your lowest -- just to BE there for you.  I was so fortunate to have Bob and regular visits from all my kids as well as loving friends.  I mmsurvivor Fri, 11 Jan 2008 00:00:00 GMT Hi Susan -- I sent a 'personal reply' to this message only because of the questions which you asked -- please let me know if you receive it.  Also, in checking the site I saw this response from mmsurvivor -- WOW this sounds fantastic!  Something to seriously consider especially as staying alive is about staying healthy and not having a compromised immune system  -- the recommended supplements are certainly those which should promote health!!  Best wishes, Cath poppy/cath Sat, 12 Jan 2008 00:00:00 GMT Thanks Cath,I recieved your message, I fear my sister is dying now.  I am not God , nor do beleive there is such a being.  If there was why would he have people like you and my sister suffer like this.???Thank and I posted another post.  I will reply after my sister Denys "Starts a new Chemo Cocktail" on Monday.Cath you are truly my angel.Thanks and I will use the word Love, SusanAre you in similar age to my sister Denys?  Like I said you both have the gift of Poetry.  Bayshore Sat, 12 Jan 2008 00:00:00 GMT Hi Susan ~~  How did the chemo for Denys go yesterday?  I can't imagine that there would have been any significant change by just starting to take it, but I'd be interested to hear.  Has she decided whether or not to go into hospice?  Is she able to look after her own physical needs, ie: shower, toileting, eating, etc?  In answer to your question, I am 62 years old.  Apart from being a wife/mother I have worked in the field of Disability Services for the past 35 years or so -- until I had to retire due to MM.  Now my energies go into helping others to manage their cancer journey by running our town's local cancer support group and helping to update and upgrade our hospital cancer services -- so that hopefully there will be an entire new wing for cancer patients in the not too distant future.  A bit of a change from my previous life, but due to the MM I haven't got the stamina to go back to my welfare job.    My thoughts and prayers are with you and your family -- do take good care, Love, Cath  poppy/cath Tue, 15 Jan 2008 00:00:00 GMT