Muscle cramps due to Dexamethasone

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

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. MMS

On 3/22/2008 Anna9563 wrote:

From Anna,

Hi MM Suvivor, What minerals would you suggest we look for for Dad?

 Your friend,

Anna

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.

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 site

The Multiple Myeloma Research Foundation http://www.multiplemyeloma.org/  Web site

alt.support.cancer
(unread)  aol://5863:126/alt.support.cancer  AOL message board on all
kinds 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 site

Multiple 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 Cancer

Myeloma Focus
3 Forest Street
New Canaan, CT  06840

International Myeloma Foundation-Myeloma Today Magazine
2129 Stanley Hills Dr.
Los Angeles, CA  90046

Cure
ATTN Sammons Tower Ste 4802
3535 Worth St
Dallas, TX  75246-9930

Your friend,

Anna 

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.          

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

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

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 helps

Susie

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

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