Severe Leg Cramps and Raspy Voice

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, **** 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 said:

A litte more

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. 

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!

Rocquie said:

Sodium

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.  

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

illead said:

A few answers totally up to them um

 

 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

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!

Evarista said:

Good news!

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...)

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!