CancerCompass message board discussion started by Anna9563 on 3/19/2008 http://www.cancercompass.com/message-board/message/all,22155,0.htm Thu, 21 Aug 2008 00:00:00 GMT Thu, 21 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi, My Dad has MM. He's had it for almost 10 years. Lately he's been having bad cramps due to taking Dexamethasone. For any of you that have taken Dexamethasone what have you found that worked for you that helped you deal with the cramps? Any help would be appreciated. Or helped lessen them? Your friend, Anna Anna9563 Wed, 19 Mar 2008 00:00:00 GMT  On 3/19/2008 Anna9563 wrote:Hi, My Dad has MM. He's had it for almost 10 years. Lately he's been having bad cramps due to taking Dexamethasone. For any of you that have taken Dexamethasone what have you found that worked for you that helped you deal with the cramps? Any help would be appreciated. Or helped lessen them? Your friend, Anna Dear Anna,My husband has muscle cramps in his fingers (of all places!) on the days he takes dex.  Doctor gave him flexeril -10 mg -1 tablet 3 times a day for back spasams.  It also helps with muscle cramps.  He tried one tablet a while back when the cramps were really bad and it helped.  Don't know if this will help, but you can speak with your doctor.  Good Luck!Jan ( we've been there WBT) wevebeenthere Wed, 19 Mar 2008 00:00:00 GMT  Try adding a 500 mg capsule each day on the dex as it helps keep the potassium in the cell. I just read up on it and it does increase kidney/renal output, and therefore loss of salt. this inbalances the cell and hence cramps so even a little sea salt may help. I personally suffered way too many sypmtoms with dex as I have an inability to keep potassium in my cells so it was just too exhausting for me to continue taking it. Hope this helps. mms On 3/19/2008 Anna9563 wrote:Hi, My Dad has MM. He's had it for almost 10 years. Lately he's been having bad cramps due to taking Dexamethasone. For any of you that have taken Dexamethasone what have you found that worked for you that helped you deal with the cramps? Any help would be appreciated. Or helped lessen them?Your friend,Anna  mmsurvivor Wed, 19 Mar 2008 00:00:00 GMT Hi Anna ~~I use to get cramps but I have found that uping my intake of quinine makes all the difference.  Schewepps drink company makes "Indian Tonic Water" which is just like soda water except that it has a small amount of quinine in the water.  Apparently it was made for people who were working in tropical countries where malaryia was a problem -- they would often have a gin and tonic after work and the quinine in the tonic helped to keep the cramps at bay.  When I heard this I thought I'd give it a go and yes, I found that it was great!  Inexpensive, tasty, and easy to use - especially during summer!  I drink it plain with just a couple of ice cubes in the glass -- put in a slice of lime and its really quite pretty as well!!  Good luck -- you can get quinine tablets from the heathfood stores, but using it as a tonic is much nicer!!  Best wishes Anna, Cath poppy/cath Thu, 20 Mar 2008 00:00:00 GMT From Anna, Hi Jan, Dad gets the hand cramps to. The other night though he was cramping all over his body.  Thanks for the suggestion.  Glad I found this board. How long has your husband had MM?  How did they find his?  How old is he?  Dad was 3 days from his 55th birthday when they found his. He was having nose bleeds.  Only found one or 2 others with nose bleeds as a symptom.  He was in stages 3 & 4 when they found it.  Your friend, Anna Anna9563 Thu, 20 Mar 2008 00:00:00 GMT From Anna,Hi MMsurvivor, Thanks for the tip on the Sea Salt.  How much do you take of it?  What was the 500 capusale's you mentioned.  The Dex?  The Dex is what he and I think is causing the cramps.    Your friend,Anna Anna9563 Thu, 20 Mar 2008 00:00:00 GMT From Anna,Hi Poppy/Cath, Thanks for the suggestion of the drink. Also about the Quinine tablets. Dad remembered he had some of them from his cancer Dr. We can't remember what they were given to him for.  How long have you had MM?  How did they find yours?  May I ask how old you were? Dad started having nose bleeds.  Only a few people I've heard of had nose bleeds as a symptom.  He was in stages 3 and 4 when they finally said he had MM.  It was 3 days before his 55th birthday. Your friend,Anna  Anna9563 Thu, 20 Mar 2008 00:00:00 GMT From Anna,Hi all, Any other ideas besides these I will take if you have them.  I'm looking for all the options I can find to help get Dad some relief.  He was hurting all over Tuesday night and I felt so bad for him.  Something that he does use is that warm heat rub stuff that smells like Methal. (Sp?).Your friend,Anna  Anna9563 Thu, 20 Mar 2008 00:00:00 GMT Hi Anna,Walmart sells a pill called Hyland's Leg Cramps with Quinine (40 caplets), small red/white bottle. I carry them with me. Very inexpensive also. Hope this helps. Chessie Thu, 20 Mar 2008 00:00:00 GMT  On 3/20/2008 Anna9563 wrote:From Anna, Hi Jan, Dad gets the hand cramps to. The other night though he was cramping all over his body.  Thanks for the suggestion.  Glad I found this board. How long has your husband had MM?  How did they find his?  How old is he?  Dad was 3 days from his 55th birthday when they found his. He was having nose bleeds.  Only found one or 2 others with nose bleeds as a symptom.  He was in stages 3 & 4 when they found it.  Your friend, Anna Dear Anna,The doctors found his myeloma in June of 2007, when he was 57 years old.  I believe his first symptoms started in January of 07 when he had a bad headache and being on blood thinners, I took him in to be checked.  They ran the usual blood work (CBC & a protime) and did a CT scan of the brain to check for bleeding in the brain.  CT was normal but, hemoglobin was in the low normal range.  In April his nose started bleeding while he was driving, so I had him get to the nearest hospital.  The lab work there showed a drop in hemoglobin from 12.6 in January to 10.3.  Got the nose bleed stopped and he came home to see our regular doc who thought the nose bleed may have caused the drop and gave him iron to take.  Nothing more was done until June when he ended up in the hospital with headaches again and the hemoglobin had dropped more.  Tests showed that he probably had myeloma.   As you said before, I, too, am glad I found this message board.  What wonderful people they all are.  Their help and suggestions have gotten me through this process so far and answered many of my questions.  What works for one person may not work for another but, at least we are all coming up with options and ideas to talk to doctors about.  When I come up blank as to what to do, these folks on the message board point me in the right direction.  God bless them all!Jan (WBT) wevebeenthere Thu, 20 Mar 2008 00:00:00 GMT  Sorry Anna: My fingers and brain do not connect sometimes.  It is Magnesium 500 mgs caps. Take 1/4tsp  sea salt in water if he can or just play with it till you  get a feel for it. Poppy Cath in the USA the Schewps drink is hard to find. even in Aussie land now. When I was there in October could not find one person selling it.... Quinine is excellent if you can get a hold of it.Yes the Dex pulls salt from the body, so it is natural when one's body is already down, that the medicine would cause more than normal salt loss.  There is a company in Arizona called New Vision that sells liquid minerals that would be agreat benefit, Unfortunately they are one of those you have to join, I just pay an annual fee and buy my own.   http://www.newvisionaz.org/ If you are interested insist just for yourself. Like many of these companies you have to sell a ton of stuff to make it worth while so I just purchase for myself. 2 doses a day of this is really great for stablilizing one's minerals and it is all natural.Hope this helps. MMS  On 3/20/2008 Anna9563 wrote:From Anna,Hi MMsurvivor, Thanks for the tip on the Sea Salt.  How much do you take of it?  What was the 500 capusale's you mentioned.  The Dex?  The Dex is what he and I think is causing the cramps.    Your friend,Anna   mmsurvivor Thu, 20 Mar 2008 00:00:00 GMT From Anna,Hi Chessie, Thanks for the info.   Your friend,Anna  Anna9563 Fri, 21 Mar 2008 00:00:00 GMT From Anna,Hi  Jan, Forgot to say in my earily post that Dad got his MM from Agent Orange in Vietnam.  He was there in the late 60's.  The reason I asked about the nose bleeds is most with this find it after they break a bone cause they're bones pit, (get holes in them) and get weak.  Dad hasn't done this.  Just the nose bleeds.  May I ask, are you all in the US.  I have found one in FL with nose bleeds but the first was in London. We are in Tenneessee by the way.Your friend, Anna Anna9563 Fri, 21 Mar 2008 00:00:00 GMT he lacks potassuim...asks the doctor to prescribe 800mg potassuim pills. they are horse pills but they will put an end to his cramps. scqttv Fri, 21 Mar 2008 00:00:00 GMT Dear Anna,My husband was never in Vietnam, however he was raised on a farm and has spent almost 30 years in ag related work.  I have read that that type of work might be a factor for myeloma.  His full body xray in June of 07 did not show bone problems, but about six weeks later he started having back pain and they found that he had compression fractures of T 6&7.  We looked into some options and decided that a brace was the best way to go for him.  Ortho doc sent him to a brace man that form fitted a back brace especially to fit his body.  Once he put it on, the pain eased greatly and within about a month he no longer needed the brace.  So far he hasn't had any more problems, but I watch him pretty close to make sure he doesn't get into situations that might cause bone damage.  Yes we are in the U.S.  We are in Nebraska.  It takes a lot of phone and computer time to try and keep all of his doctors on the same page.  Also involves a lot of travel getting to appointments.  I have gotten almost all of the results from labs, bone marrows, CT scans, xrays, MRIs, etc and I carry them with me to every doctor appointment.  First I had them in a file, but just a while back I organized them in a notebook with labels.  This really helps save time when the doctors need that information.  Take care.Jan wevebeenthere Fri, 21 Mar 2008 00:00:00 GMT Hi Anna!  I've had MM for 5 years.  I had a bad backache and had been going to an osteopath who said that it wasn't getting better with his treatment and recommended that I have further xrays.  My GP then started scheduling the grueling set of tests for MM, though none of us realised what he was heading towards.  I had a full skeletal survey, nucelar xrays (which are not really necessary for MM), bone density xrays, full blood tests, paraprotein tests, 24 hour urinalysis, and finally the bone marrow biopsy.  After all of this, my GP diagnosed his first case of MM and we've both been on a huge learning curve ever since!!  He is a lovely guy, and as I left his office after he first told me, I remember him saying "I"m sure that you will know more about Myeloma by the time I see you in two weeks than I know"!  He was right because I went on a huge information search, but the best thing I ever found was this site -- it has been GREAT for information and friendships!!  My MM is all over my body, but primarily in my bones.  I have leisions everywhere from all my bones to my skull.  The pain is pretty intense, but we seem to have it under control with fentenal patches and some break through medication.  I was told I had 2-3 years from diagnosis, but here I am in my 5th year so we're not doing too badly.  With all the new discoveries in medications I've had everything except a transplant because of my age (62) and the fact that I've had really bad side effects from all the drugs with the exception of Revlimid!  I've now been on Rev for almost 20 months and I pray that it continues to work for ever as its been the best one for me since diagnosis!!  My paraprotein reached 90 at its highest but has been 8 for about 15 months!!  What could be better? (Paraprotein is the Australian way of saying M-Spike and the measuring is different. A normal person has NO paraprotein, and 100 is not the 'top', the number just keeps getting higher and higher - my doctor has seen very sick people at 30 and me - still fighting at 90, so go figure!)I'm very positive, I keep myself very active with running a local cancer support group and taking part in U3A - the University of the Third Age - where older retired people go to learn all sorts of things without having to take exams or write essays!!  I enjoy all family things, playing with my children and grandchildren as well as growing closer and closer to my wonderful husband, who is also my carer!  There is not point in being negative about MM - its not going to help anything or anyone, and by keeping it at bay hopefully I'll have a lot more time.  I do hope that your dad's nosebleeds have subsided and that the doctors have been able to stablise his blood work so that he doesn't have any more.  This is a strange and individual disease, with few people having the same problems -- most of us are very unique!!  Thats one of the reasons that it is so hard to treat because there is no 'one cure for everyone'!!  Everything has to be tried until you find the one that works the best for you, whether thats chemo, radiotherapy, oral chemo, transplant, etc. Usually at least one thing works, and life is always worth living!!  My thoughts and prayers are with you and your dad. He is blessed to have you advocating for him and assisting him along the MM journey.  Your support will make a huge difference for him and for those around him who are all working to find what will be the best for him.  Knowing that he has you will keep them on their toes in helping him -- its just human nature, but thank goodness he has you!!  Do take good care and keep on keeping on -- life is certainly worth it!!  Best wishes to you both, Cath poppy/cath Sat, 22 Mar 2008 00:00:00 GMT Hello MMS - I was able to purchase Schwepps Indian Tonic Water in one litre bottles at Safeway, very cheap.  No problems.  Cath poppy/cath Sat, 22 Mar 2008 00:00:00 GMT From Anna,Hi MM Suvivor, What minerals would you suggest we look for for Dad? Your friend,Anna Anna9563 Sat, 22 Mar 2008 00:00:00 GMT From Anna, Hi Jan, They might have to give him a bone strenghtener at some point to help keep his bones strong. Dad has been on one for years.  They cause side effecs but everything can.  How far do you all have to go to the Dr?  Your friend, Anna Anna9563 Sat, 22 Mar 2008 00:00:00 GMT From Anna, Hi Jan, Forgot that people that work around Pestidsides can get MM to.  Its also been called the Old Man's disease cause I guess it was older people getting it.   Your friend,Anna  Anna9563 Sat, 22 Mar 2008 00:00:00 GMT From Anna,Hi Cath, Dad went through 3 cancer doctors before he found one that would treat him aggressively.  Your not seeing a cancer Dr. from what I got from your post?  Interesting.  His nose bleeds were gotten under control after they found he had it almost 10 years ago.  He's been through 2 stem cell transplants using his own blood and chemo like a said 3 times.  He's been on Velcade at one time and Thalidomide. Maybe another chemo but I don't remember right now.  His has pitted bones all through his body.  He doesn't have a lot of energy.  He's not bed ridden though.  He does what he feels like.  After he found the 3rd Dr. he asked him how long he had and he said I have no idea how long you have you've already beaten the average of years.  He had to stop the Thalidomide because it caused him blood clots.  His on blood thinner now.  He's had pnuemonia 5 times.  Four times before they found he had MM.  With all the flu and sickness going around here lately he's been staying in. The Dr. told him a while back if got real sick that could be real bad for him. Mom and I have even been staying in as much as we can not to get him sick.  So far so good.   Your friend,Anna Anna9563 Sat, 22 Mar 2008 00:00:00 GMT http://www.newvision.com/content.asp?page_id=7 Anna: go here and read up on the liquid minerals. Add the salt and the Magnesium also and this should help. Search this website as it has some interesting information. MMSOn 3/22/2008 Anna9563 wrote:From Anna,Hi MM Suvivor, What minerals would you suggest we look for for Dad? Your friend,Anna   mmsurvivor Sat, 22 Mar 2008 00:00:00 GMT Poppy/Cath:We were in Safeway but it was S Australia so maybe each state is different. One used to be able to buy those drinks at the Gas station and the family store. Now they have gone "American" and are bringing in more junk similar to what is sold here.  I guess the tastes and trends change.I would love to have some now......when I was nursing in Australia we served the patients Quinine Water but that was a LOOOOng time ago.  mms. mmsurvivor Sat, 22 Mar 2008 00:00:00 GMT From Anna,Hi Jan and others here are Multiply Myeloma links I found a long time ago when Dad first got sick. They might help if you don't already have them.The International Myeloma Foundation Is Here To… http://www.myeloma.org/  Web siteThe Multiple Myeloma Research Foundation http://www.multiplemyeloma.org/  Web sitealt.support.cancer(unread)  aol://5863:126/alt.support.cancer  AOL message board on allkinds of cancer including Multiple Myeloma.Blood & Lymph Disorders aol://5863:126/mBLA:107465  Another AOL message board.IMF: Research: Clinical Trials http://www.myeloma.org/myeloma/research_trials.jsp  Clinical Trials siteMultiple Myeloma aol://5863:126/mBLA:107443  Message board.  Good one.Myeloma - Home Page from About.com  http://cancer.about.com/health/cancer/msub19.htm  Web site.MyelomaExchange http://www.webspawner.com/users/myelomaexchange/ Web site.Welcome to CUREtoday.com - Be sure to get your …  Online magazine about CancerMyeloma Focus3 Forest StreetNew Canaan, CT  06840International Myeloma Foundation-Myeloma Today Magazine2129 Stanley Hills Dr.Los Angeles, CA  90046CureATTN Sammons Tower Ste 48023535 Worth StDallas, TX  75246-9930Your friend,Anna   Anna9563 Sat, 22 Mar 2008 00:00:00 GMT Anne,When I first found out that I have MM, my first cancer doctor put me on dex and I developed intense cramps. The worse cramps came at night and they were so intense I could actually see my legs curve inward. I had little cramps throughout the day but the big ones always came at night. It got so bad, I tried to stay up all night. I told my primary doctor and my first cancer doctor (who specialized in general cancer) about these cramps and they tried different drugs but the cramps would not go away. One month after the cramps started, I saw a doctor that specialized in MM and right away she knew what was causing the cramps. So, she put me on 800mg of potassium and it worked.           scqttv Sat, 22 Mar 2008 00:00:00 GMT  On 3/22/2008 Anna9563 wrote:From Anna, Hi Jan, They might have to give him a bone strenghtener at some point to help keep his bones strong. Dad has been on one for years.  They cause side effecs but everything can.  How far do you all have to go to the Dr?  Your friend, Anna Dear Anna,My husband is on Zometa to help harden his bones.  Usually has no problems with it unless the doc gives it to him 3 weeks apart.  He gets flu like symptoms.  We finally insisted that the treatments be 4 weeks apart so that it doesn't make him ill.  So far, he hasn't had any more bone problems.  They will probably be doing more checking of his bones soon, as he is being checked to see if he can have a stem cell transplant.  We travel about 20 minutes to see our family doc, 1 hour to see our primary oncologist and 4 hours to see the transplant specialist.  It helps that we have a son that lives about 50 miles from the transplant doc and we can go the night before and stay with him, then drive into Omaha the next day.  Gives us a chance to visit and breaks up the trip.  Also have a sister in that area, so we've got places to stay.Jan wevebeenthere Sat, 22 Mar 2008 00:00:00 GMT From Anna,Hi Jan, Dad has been on Zometa for a long time.  Dr. took him off briefly cause of a side effect for him called Dead Jaw.  His jaw is getting hard and he's having trouble with his teeth. A couple are loose and his had to have some other dential work in the last 2 years.  Glad you have family to stay with.   Your friend, Anna Anna9563 Sun, 23 Mar 2008 00:00:00 GMT  On 3/19/2008 Anna9563 wrote:Hi, My Dad has MM. He's had it for almost 10 years. Lately he's been having bad cramps due to taking Dexamethasone. For any of you that have taken Dexamethasone what have you found that worked for you that helped you deal with the cramps? Any help would be appreciated. Or helped lessen them? Your friend, Anna Hi Anna,I have had MM since 03/14/01. In Dec of 06 my m-protien went to 8 and my Doctors started me in a trial for Revlimd and Dex and I also had hand and feet cramps. I have been taking L Glutamine 3 times a day 1500 mg each and this works very well if I notice cramping I just up one pill. THis is the dose that worked for me you can find it in any health food store. Like you this site has helped me alot I have never replyed to a message I seem not to always remember or get facts straight but these pills really help. I was on a 4 cycle 49 mg of dex and now I only take once a week andonly 20 mg but I still get the shakes and don't sleep well and puffiness alone with the red face.I hope this helpsSusie     Susan K. Tue, 25 Mar 2008 00:00:00 GMT From Anna,Hi Susie, Dad takes 25mgs once a day for the 21 days he takes the Dex.  Like you though I think its building up in his system. He went back to the Dr. yesterday and found out that his protein is down a little but not enough for him to stop the chemo.  So he will start his 3rd round next week I think.  Thanks for the info. Your friend, Anna Anna9563 Wed, 26 Mar 2008 00:00:00 GMT From Anna,Hi all, Just wanted to tell you all that the quinine you all recommeded has helped Dad a whole lot.  He's on his 3rd round of chemo and Dex and has the cramps only very slightly in his hand.  We are very pleased.   Hope things are going ok with you.  Oh yeah this post doesn't mean I'm leaving this board. I'm not.  I'll stick around and talk to you and help out when I can.  And still share Dad's progress with you.  Just wanted to up date you all and to say a big thanks. Your friend,Anna Anna9563 Fri, 04 Apr 2008 00:00:00 GMT So glad it worked Anna!  Your postings have been lovely and I have really enjoyed following your search for the information you needed.  You have been very clear in responding to each and every message individually -- sometimes people tend to jump in and answer messages that are not necessarily intended for them, thereby confusing the line of the message.  Your clearly labeled replies have made the thread remain focused -- well done, for this is one of the longest messages that we've had in a very long time!Best wishes to you both and congratulations for perservering until you found a solution to the problem!!  Cath poppy/cath Tue, 08 Apr 2008 00:00:00 GMT