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Dexamethasone and muscle cramps

Chelsea71
Posts: 1167
Joined: Sep 2012

For those of you who have done dex. on a regular basis. (Not just with the chemo cocktail). Have you had any trouble with muscle cramps? Steve has been on it for 28 days and muscle cramps have become a problem. His arms and fingers have been jerking out in spasms. The legs are the worst. In the night he had cramps so severe that he can barely walk today. Anyone experience anything like this? The onc is aware and we will start the wean today. Any tips to deal with cramps?

Thanks
Chelsea

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

Hey Chelsea, I believe I only took Dex prior to infusion...any other steroids I did would have been up to 7-days and then discontinued...

28 days sounds like a long time...and it seems like Steve's body is acting out on him. I hope the swelling has gone now by now, or greatly reduced...it sure sounded serious last time you talked about it.

I'm glad they will begin to wean...for cramps, perhaps you could inquire about an IV drip of Potassium? 

That's all I got...well, that and a big hug!

 

maglets's picture
maglets
Posts: 2396
Joined: Jun 2006

 

Hi chels....no I just took it the night before, then the day of and 2 more days after that.....I hated that darned drug....felt strung out but can't say I noticed any cramps....sorry....I'll send a big hug too

 

mags

Chelsea71
Posts: 1167
Joined: Sep 2012

Hi Mags,

It is a really dirty drug. He used to take prednisone for his ulcerative colitis but dexamethasone was a whole new ball game. We start the wean today. Hopefully he'll get off it by Feb 23, without developing any problems.

Thanks

jen2012
Posts: 1185
Joined: Aug 2012

My husband does same as mags...he did get cramps.  He eats lots of bananas in the week after his treatment.  Between him and the baby, you'd think we have a house full of monkeys living here....buy several bunches a week!  He also tries to increase fluids, but it seems like Steve will need more help than that since he's on it all the time.  Hopefully the weaning will help soon.    I'm sorry he has to deal with this on top of everything else :(

Chelsea71
Posts: 1167
Joined: Sep 2012

Thanks Craig,

Today has been a bad day. The clot by his port has continued to be a problem. Swollen face and neck, cough, hoarse voice etc...... The onc and thrombosis doc just want to wait for this damn clot to dissolve, but it's just not happening. The symptoms are wearing us down. Now we also have these new steroid effects to contend with, as well. On Monday, I had had enough and called Ottawa and demanded they make arrangements to administer TPA into the central line. (The only reason I even know about this procedure is because of my own research. No doctor ever mentioned that this was even an option). They actually listened to me! I suspect they were holding off due to the expense of this medication. So he went in yesterday and they injected 2 ml's into the port to soak overnight. Today he went for chemo. They sucked it out. Clot is gone. Good blood return for the first time since Dec. Clot symptoms almost gone! Unfortunately, we can't enjoy this moment because Steve can no longer walk. (due to the steroids). It seems like one problem is always replaced with another. CT scan tomorrow in
Montreal. Meet with the surgeon, from Montreal on Monday. There is just so much going on. I'm feeling so worn out. Steve likes to always be so positive and it upsets him to see that I'm upset. I am so grateful to have all you guys to vent to. Sorry for whining. I feel much better now. At least that clot is gone. I'm hoping things will start to turn around soon.

Chels

Hooley's picture
Hooley
Posts: 149
Joined: Aug 2012

Hang in there ur doing great.  I had the ex pre chemo and erbitux.  After round 3 I decided not to take the night and morning dex cos I felt ok.   The dex is crap so if u can do without worth a try.   God bless and prayers always for u

Chelsea71
Posts: 1167
Joined: Sep 2012

Thank you. I figure Steve not being able to walk must be what the web sites refer to as muscle weakness. Seems like a common enough side effect. Dex is crap. We hope to be done with it very soon.

jen2012
Posts: 1185
Joined: Aug 2012

You aren't whining Chelsea. This is just too much. We shouldn't have to be the researchers too....wouldn't it be nice to be able to count on the doctors to do what they are supposed to do...not like we don't have enough to worry about!  Glad you found that though and it helped with the clot!   Steve is very lucky to have you.  Chin up!  Hopefully he'll get his strength back soon.

Hugs!

Chelsea71
Posts: 1167
Joined: Sep 2012

Thanks Jen. We have learned the hard way that we can't count on the doctors. I really appreciate your support. Hope all is well with you, Mark and the kids. I remember reading something about a weekend getaway. Enjoy.

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

My heart took a surge of adrenaline with happiness when I read 'clot gone.'  Yay! 

And then...he can't walk now...do you think it is a case where rehabilitation therapy can help him regain some mobility?  Perhaps the atrophy from being bedridden and the dex combination can be improved?

I hope so...know you are both whupped...I hear it in you now...but just get it out...that's what I'm trying to do now...and then when I think of you in your situation, I think Chels doesn't need this...but then I think, maybe in some of her quiet time, she can draw from the well and renew a part of her spirit...some part of it that allows her to make it through the night and onto the next day.

I don't write for myself, Chels...I write for folks like you and Steve...

You just go ahead and get those feelings out...I'm trying to get all of mine down on paper, before my head explodes...the thoughts just keeping running in my head over and over...just like the movie Groundhog Day!

LOL!

Did I make you smile?

Ok, I'll just have to try harder:)

Hoping for a turnaround for you both....very soon...always in a battle we have to find a couple of resting spots along the way...both for our minds...and our bodies.

Warmest hugs!

-Craig

Chelsea71
Posts: 1167
Joined: Sep 2012

Yes Craig, you made me smile. Unfortunately, it's through tears. I'm exhausted and feeling near the end of my rope. Steve's situation seemed much worse this am. Leg was extremely sore, swollen and quite bruised. He had a ct scan scheduled in Montreal. I wanted to cancel, he insisted we go. It wasn't easy. Had to use a wheelchair. We did it though. Headed home quite tired out. (Montreal is an hour and a half east of us). During the drive Steve mentioned that the swelling was expanding down his thigh. He didn't look good. I decided to take him right to Ottawa. This is where he receives his cancer treatment. He is in the ER now. (I'm in the cafeteria). They think it's another freaking blood clot. His thigh looks terrible. Swollen and really bruised. He can't put any weight at all on it. He is medicated to the point where it's hard for him to stay awake. How on earth could he get another clot when he's been on 15000 IU's of Fragmin for six weeks. I give the needle every morning at 7. Have never missed a dose. It's never even been late. They have ordered an ultrasound. We are waiting. I thought for sure it was the dex. He has just been through so much. He looks so sad. The ER doc seemed taken aback when he disrobed to show the swelling. Can't really blame him. He has the ileostomy on one side, the 5th pump on the other, bruises all over his stomach from the needles (dex causes bruising). The one constant throughout this whole ordeal has been Steve's up-beat and positive attitude. Today he was making comments such as, "Sorry for ruining your life.". I guess are both feeling worn down. I'm also concerned about the liver surgeon. I have to think this new blood clot (or whatever it is) is going to be a strike against him. I can't see any surgeon thinking that he is a good surgical candidate. I will have to cancel his app for this Monday. He can't do Avastin anymore. Erbitux is out the window due to the stupid Kras mutation. Chemo for life doesn't look too promising, at this point.

Thanks for letting me vent, everybody. Steve's entire family is gone (deceased). He only has my family. I can't dump all this crap on them, they are already extremely worried (and up there in years). Don't like to talk with friends (believe it or not, I'm actually a private person!). I hate being one of those people who always has some big drama going on. So, I guess you all are the lucky ones.

Thanks for listening to all these scattered thoughts. Next time, I will try to organize my thoughts into paragraphs.

Chelsea

Phil64's picture
Phil64
Posts: 411
Joined: Apr 2012

Chelsea, your thoughts are well organized and articulated. Steve is lucky to have you taking care of him. Please try to take care od yourself too. 

You and Steve are in my thoughts and prayers.

 

maglets's picture
maglets
Posts: 2396
Joined: Jun 2006

Ahhhh Chels you break my heart.  You are working so so very hard right now. Your thoughts are not scrambled ...you are obviously a highly organized and discipined person . Poor poor Steve.......how wonderful if you could both just catch a little break right now....just a wee breather....I have no sage advice for you ...one step one step.....

are you eating are you sleeping and you walking around the block when you can? I think we are in for fridgid temps this weekend...

Oh Chelsea I wish I were there to help....I send you love and a big timmies with chocolate covered donut and a hug.

maggie

Chelsea71
Posts: 1167
Joined: Sep 2012

Good morning Maggie. Yes, it would be nice to catch a breather. Since the first of January it's just been one thing after another. We are both feeling drained.

Hope you enjoy your trip. It will do you good to get away from these freezing temperatures.

Speaking of Timmies, there is one here at the hospital. The line up is always huge. People will literally stand in line for 45 minutes to get their fix. Now having said that, I'm off to Timmies.

Chelsea

Chelsea71
Posts: 1167
Joined: Sep 2012

Thank you for your kind words, Phil.

I checked out the picture of your rash. It's not that bad. I've seen much worse. Don't let it interfere with having a great weekend.

jen2012
Posts: 1185
Joined: Aug 2012

You guys arent catching a break. Im really sorry. You do need to try to get some rest...i know how hard that is. Definitely lean on us...but think about confiding in someone close to you too. Im the same as you but you could use some help even if its a dinner or someone to visit with steve while you get a bite to eat or go for a walk. I wish we could help.
Hugs!

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