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Severe Leg Cramps and Raspy Voice

Anonymous user (not verified)

Hi Everyone,

Couple of things.  First of all, how does the "friend request" and e-mail thing work on this site?  There have been a few really supportive folks who have responded to my comments whom I'd like to learn more about and talk to them if they would like to do that.  I suspect it has something to do with the fact that I didn't want my personal e-mail listed anywhere until I know more about some of the people who have reached out to me.  Short-cut tips for how this all works would be much appreciated.

Secondly, since I posted my long, sad saga . . . . my husband, Terry, had a few severe muscle cramps, much like the ones I witnessed him suffering from years ago and occasionally when he overdoes things out in the yard.  So, I placed a call to our oncologist's office and they suggested this simple solution:  Drink a little less water and try to incorporate a little more salt into his diet.  Tada!  It did the trick (so far anyway).  I googled the issue and discovered that it is a ballet dance to try and balance fluid intake and salt.  Salt is needed to keep leg cramps to a minimum and if a person basically "flushes" their system with large amounts of water . . . there goes the salt a person needs.  At least in Terry's case . . . I think we may be on to something.  Anyone else had this issue and the same resolution for it?  Of course, everything should be fielded through a person's medical team before changing anything up, but if the need for one less pill or one less debilitating side effect can be eliminated . . . Hey, we're all for it.

Other than that Terry is doing pretty good . . . no ill side effects to speak of yet.  Of course, it's only been one "hit" with the chemo.  We go in for Round 2 next Thursday; but we're hoping he will be spared as he was this time around.  He even went back to work yesterday in his driver's uniform (so proud of him, as he was to see that in the mirror).  He wants to try to work as much as he can instead of moping around the house.  I told him, though, that he is in charge of this dog an pony show, so when it's too much . . . it's just too much.  We can make do.  I'd rather have him as happy and healthy as I can to enjoy our time together, rather than dragging himself around just to pay our electric bill.  I have enough candles stocked in my pantry to last us into the next century.

The other odd thing we've noticed since his surgery in April (although we've had it come and go this past year) . . . his voice seems "raspy" at times and has to continually clear his throat.  They had suggested he take Pri-Lo-Sec, preventitively, but it seemed to make it worse, after taking it for a week; so, we stopped it and it seems to be a bit better.  Activity seems to make it worse; but since we stopped the Pri-Lo-Sec, it's getting better.  Anyone else experience this same thing?  He has a lymph node on the right side of his neck, affected by this stupid condition . . . but were wondering if anyone else has had something similar.

Hope all is well with everyone. 

Til next time,

Dawn

illead's picture
illead
Posts: 812
Joined: Aug 2012

 

 Hi Dawn,

      This forum offers private messaging through CSN. Just tap on the picture of who you want to message and it will go to their information page, you will see several choices and one of them is contact user,  just tap on that and it will take you to CSN email and you can send an email privately with no information being exchanged. However, if the two parties decide to share their private information that’s totally up to them.   My husband Bill has a different lymphoma, it is mantle cell lymphoma, but he also suffers from cramps, probably the medication he’s on and Rituxan.  He takes Thermo tabs (over the counter from any pharmacy),  he actually gets them online now. I did read on another forum that some have had real success with of all things 4 ounces of pickle juice a day. Their local “Subway” saves their jars of pickle juice for him.  I can’t speak about rchop as Bill had a milder chemo Bendamustine/ Rituxan, and although some have had side effects from the benda, Bill never did, he felt fine all through his chemo. He had extreme rigors (shaking)  as a symptom before he was diagnosed. He also had them during his first chemo which we now think may have been the rituxan because when he relapsed this year and started On Rituxan again, he had rigors. He has an infusion once a month and has had no problems since.  The nurses told us that since were rituxan is made from mice, the body tries to reject it, mostly just the first time and that’s why he most likely got the reaction. Bill also had a raspy voice  during this round of treatment  and the more he talked the worse it got.  However, now that you mention it I haven’t been noticing it so hopefully it will go away for Terry also. I hope this helps, hopefully others will have some better information with his specific Lymphoma.

 Thinking of you,  

Becky

Anonymous user (not verified)

You, Becky, are a true jewel with so much info and experience I want to tap more into.  THANK YOU!

Terry reacted to his first infusion of Rituximab.  It was the first IV drug they gave him last month.  Slow . . . very slow drip.  Took an hour and a half just to get through barely a quarter of the dose.  He got up to use the restroom and when he got back he noticed a small rash starting on his right arm.  I immediately opened his shirt and saw several small red dots and streaks.  They stopped the infusion immediately when he then started shaking uncontrollably.  They gave him some more Benadryl, waited for a bit and then sped up the drip.  No problems after all that; but we're obviously a little scared what may happen next week with Round 2.  Geesh this stuff is a trip to the dark unknown.  I know that things aren't usually as bad as what you imagine they will be . . . but, still . . . scarier than all get out.  We're hopeful, and encouraged we haven't seen any of the things we were so frighted of before treatment began . . . yet, from what we understand . . . this stuff can be more cumulative as treatment progresses.  He hasn't lost his hair yet (we were told by the middle of the two weeks after his first treatment), which has us wondering if/when that may happen.  We're hoping it doesn't, obviously, but want to be ready to get him that special haircut before it starts coming out in clumps.  Did Bill lose his? 

Terry's cramps seem to have subsided, as has his raspy voice since he started drinking less water and trying to incorporate a little more salt into his diet.  We'll be sure to bring it all up with the cancer team next week.  You are so sweet in sharing so much of your story.

THANK YOU!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3044
Joined: May 2012

Dawn,

The Friends and email functions here are very easy to use. It seems Becky explained both very well.

If your husband's sodium levels are causing his leg cramps, it may be that his electrolytes generally may be out of wack -- something to ask his doctor regarding.

Salt is a primary cause of hypertension, so be careful with it.

Potassium is also a key component regarding muscle cramps, so testing for correct potassium levels may be advised also.

max

Anonymous user (not verified)

For sure, Max . . . BOTH sodium and potassium are essential to dancing that finely tuned balance!  I remember through Terry's other challenges, his potassium levels (although not terribly "off) were a factor.  Thanks for reminding me.  Will be sure to follow everyone's e-mail directions, as I have so folks now I'd like to talk more to.

Take care!

Dawn

Rocquie's picture
Rocquie
Posts: 817
Joined: Mar 2013

Hello Dawn, I have read your previous posts. You guys have really been through it and I honor your dedication to your husband's health.

I'm glad Terry has done so well with his first R-CHOP. I had 8 treatments of it and it didn't start our very well. I was hospitalized three times due to serious infections and other side effects. Once my dosage was adjusted, I took prophalactic antibiotics, amd got regular blood transfusions, I did fine on through treatment. 

One serious side effect was when I was diagnosed with SIADH (syndrome of inapproiate anti-diuretic hormone). It is dangerously low sodium and is considered a medical emergency. It is also known as water intoxication and can be fatal. I urge you to follow Terry's blood sodium levels closely. When a CMP (complete metabolic profile) is done at his check-ups, always ask for a copy of the lab reports. Over time, I have noticed that eating more salt does not affect my sodium level, but cutting back on fluid intake does. Many people will recommend drinking lots of water while on chemo but that doesn't work for everyone. Keep tabs on those levels.

If you have more questions about that, please don't hesitate to ask.

Cheers,

Rocquie

PS - To send a private email, look in the brown area in the side bar to the left. CSN Email is one of the choices, just click.  

Anonymous user (not verified)

Thanks, Rocquie!

You're right . . . it is crucial to get copies of all labs and imaging tests; as we both want to work WITH the docs to interpret findings and discuss them.  I don't know how many times I've picked up on things they sometimes overlook or don't explain.  This sodium thing is one of our challenges, obviously; but, of late, they are concerned about his liver tests.  They told us his liver is functioning on its own (for now); but are concerned that the three indicators of inflammation (sorry, would have to look them up) keep coming back as "elevated".  The doc is concerned.  I can tell.  So are we.  First of all, with his Hep C history . . . . we're a little nervous even though they ran the PCR test and that came back negative before they began treatment.  These three tests were always elevated and kept coming back more abnormal than the last time they were run before they found the Hep C.  Even though they told us his PET didn't show any "organ" involvement yet . . . and that the lymphoma was in multiple places, at this point, it would appear it's "only" in four different lymph node locations.  Obviously, we're concerned that there has been some sort of compromise with his liver since they did the PET . . . God, this crap spreads fast!!!  Hopefully, Thursday's CMP will give us reassurance and some of that vital information as far as his sodium levels are concerned.

Thanks for the info and for the e-mail help.

Take care!

Dawn

PBL
Posts: 170
Joined: Jul 2016

Hello Dawn,

I would just like to add a quick remark to the above comments: it is generally recommended to ban salt, as well as sugar, at least during the first five days of each cycle - that is, the five days when a patient on R-CHOP is taking high-dose Prednisone, in order to avoid causing organ damage. Since Terry's oncologist suggested increasing his salt intake, I suggest asking him how best to manage this conundrum.

PBL

 

 

Rocquie's picture
Rocquie
Posts: 817
Joined: Mar 2013

Banning salt is recommended by whom?

Anonymous user (not verified)

I know, right?  When Terry had kidney issues they were all about limiting salt intake and put him on a low dose BP med to lower his BP, so as to help him with urination.  We tried to go off the BP med through the years; but everytime he tries, he has trouble "going".  We were told that these R-CHOP drugs could lower his blood pressure, as well, so one of our questions for the Oncologist next week is going to be how to balance fluid intake, the obvious salt he needs to keep the leg cramps at bay and keep that BP regulated so as not to damage or compromise his kidney function.  That Terry . . . has always been such a delicate "flower".  I always kid him about that since he has always lifted weights and been such a fit guy with muscles that would put "Arnold" to shame.  (at least that's how I've always looked at him).  :)

PBL
Posts: 170
Joined: Jul 2016

Before my first R-CHOP infusion, I was handed by the hematologist a list of recommendations which included refraining from salt and sugar during the Prednisone days. I have also read the same on various articles aimed at patients.

Herebelow is a trace of the origin of such recommendations:

"What special dietary instructions should I follow?

Your doctor may instruct you to follow a low-salt, high potassium, or high calcium diet. Your doctor may also prescribe or recommend a calcium or potassium supplement. Follow these directions carefully."

(extracted from https://medlineplus.gov/druginfo/meds/a601102.html)

Anonymous user (not verified)

THANK YOU, everyone . . . look for some requests for personal exchanges.  You folks are awesome! 

Terry had a great day today.  I cut and pasted an update from my Facebook page tonight of our day in lymphoma land today.  I work full-time, so my time is a little limited as to when I can respond to everyone.  Facebook has kept me connected to my friends, as many of them have helped us carry this burden of poo.  Will write more when I have time.  Look for those contact requests.  You've helped make a stupid day less stupid.  All suggestions were appreciated and will be followed up on, for certain.

Here's that cut and pasted update from FB.

Terry is STILL doing great! Yay!!!!

He donned his Metro uniform yesterday (he's a city bus driver) and did okay. Today, he says is a MUCH better day and feels like his old self, pre-hell . . . So Yay! Next hit of poison is the 14th (a week from this Thursday) . . . . hoping for the same semi-peaceful week after . . . Keep the prayers comin' !!! And, THANK YOU!

I, however, on the other hand, had a shi*&$ day . . . had to battle with the HMO. Never realized they had a "special" form we were supposed to fill out, proving I've been married to Terry for 40 years and that it's okay to "talk" to me about his "case". Never mind the fact that I've been talking to every Tom, Dick and Harry, shoving needles and tubes up his every orifice for months now but had to have a special form and verbal "permission" from him for me to talk on his behalf to an HMO that sends bills to me in my name (I'm the policy holder, can you believe that horse hockey?) . . . to try and find out why we were being billed directly from some dumb  butt radiology firm that read his "scans". They asked me what scan, what coverage date . . . and all I could think of to say, "Pick one". He's had and will have a scan from April into perpetuity. And if you think I'm going to jump through their hoops or yours each and every time, just to get you to do your job and them to do theirs, you're completely unaware of just who you're dealing with here, people.

Honestly, I told them that all this nonsense today didn't help us with the heavy burden we're trying to carry each and every day . . . at all! They, of course, said they "understood". To which, I told them in a bitchy tone of voice, "No, you don't. You have NO clue what this is like".

The important thing is that my love is doing great and we think all your prayers, well wishes and messages to whatever god you worship . . . . has helped.

Okay . . . that's it. I'm better now . . . venting, with the help of a half bottle of Pinot Noir.

Some of it a bit amusing (now); but earlier today, I was spitting nails.  Honestly . . . what a system!

Anyhow have a good night . . . Til later.  Keep laughing your way through when you can, right?

Evarista
Posts: 219
Joined: May 2017

Sometimes the alert from CSN to your email lags, so if you are expecting a communication, it is a good idea to log in and click on the "CSN Email" link in the upper left hand corner. New communications will be bolded.

About salt:  his labs & doctor are his best on this.  If he does need to take in more salt, I suggest that that he not do it by eating salted foods (nuts, chips, etc.)  These can aggravate mouth issue and could be contributing to his raspy throat.  He can get salt from something like cheese without causing that oral irritation. 

Anonymous user (not verified)

Thanks, Evarista!  The clinic told us that he SHOULD eat chips, nuts, etc.  But, I can, definitely see a complication with those things as far as the mouth and raspy voice are concerned.  The last few days have been going really well.  No cramps, voice is better and he hasn't (so far) had any mouth issues.  Will, definitely, consider what you offered, though . . . should we run into more issues.  THANK YOU!

 

Evarista
Posts: 219
Joined: May 2017

As you noted in your other post, not everyone suffers the same side effects.  Many of us on here have had to deal with mucositis.  If he does not have it, hooray!  I hope he continues to enjoy those salted nuts (I miss them so much...Cry)

Anonymous user (not verified)

Thanks . . . my heart breaks with each cramp, each wave of fatigue, and this has only just begun.  Thank God for you and everyone else who has taken interest in our situation.  Your knowledge and experiences are invaluable.  They give us both hope and inspiration.  

For us, we have to have information in order to "hope".  Just wishing for that "blanket" hope everything will be fine is too general and too broad a wish/prayer.  Eyes wide open . . . gathering information so we can direct our own prayers and hopes toward something with specifity . . . that's how we are doing this.

Take care, my friend!

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