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Upper body muscle and throat tremors

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

Hi All,
Well, this is my first official post with a question about experiences. My wife, mimi-warrior, and I have been reading this wonderful blog since we found it several weeks ago. Our hearts and prayers go out to all of us who have found ourselves in this situation. Thanks for being here!

I am a newly diagnosed LBCNHL who just started R-CHOP this past Monday. My tumors are wide-spread, including abdomen (very large) and throat, mid-chest, liver. Amazingly, I had no severe systemic symptoms and was diagnosed only when a large lump appeared in my throat.

Here's my question, just having started chemo, I am feeling repeated muscle spasms in my upper body and my throat. These are involuntary twitches that can go on for a long time. Sitting here early AM they have started up since daybreak.

My psychological problem with it is that I associate these tremors with acute nausea and vomiting (because of an incident while driving before that lump was removed from my throat). So they scare me a little.

The other thing that bothers me is that now, after I've started chemo, I am developing night sweats. Odd.

So, if anyone has some similar experiences, please let me know.
Thanks

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

Congratulations on getting through treatment 1. I finished 6 cycles of R CHOP last January. I know, for me, I had subtle odd feelings in areas where there were tumors or activity. The drugs go directly to the areas and destroy them quickly so it would not be unusual to feel sensations there especially with the first treatment. I guess the kind of sensations felt would be as varied as the people who are getting them. As to the association with nausea etc. are you feeling nauseous or reminded of it? I know for me I was diagnosed by a lump in my neck. During treatment I would feel itching, pulling and numbness in that area and figured it was under attack, but worried that it was growing or whatever. I also had night sweats during treatment from time to time and I think it's part of the process. I did achieve complete remission that was evident after treatment 2 and just prior to treatment 3 so you can see how fast this works. I still had to finish all 6 though. As always if you are concerned with anything during treatment call them. Peace of mind is priceless. Hope this helped a little and wish you all the best. Mary

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

Wow, congratulations on your great success! I can't tell you how much it means to hear that such progress is possible. After having read some of the responses to my question, I think that much of what I am feeling is probably just tumors reacting to the the chemo.
The issue with the quivering tremors in my neck is, I think, much more related to mental condition than to reality. (I have always had a severe aversion to nausea and vomiting, so anything that causes me to focus on it can be scary.)
Since I am so very early in the process, I have done very well. So far I have good appetite and little nausea. However, the last dose of prednisone was today. Tomorrow morning I am scheduled to operate the computer video program for our church services. My doc said to keep to my normal schedule - so I'm taking my nausea meds with me and plan to enjoy the services. In all honesty, the first week for me has not been bad.
Thanks so much for your story of success!
Tom

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

TC,
I was diagnosed with small cell nhl grade 1 stage 4. The larger tumors were in my abdomen. Small one in the upper clavicle area and small one in the groin area. It also was in my bones. That put me at stage 4. After my first treatment the tumors shrank so fast in the abdomen I felt funny sensations in that area for a couple of days. It wasn't pain,just a feeling like something was moving around. I was told it was the shrinkage of the tumors and they cause that weird feeling. I still get them after each round but no ways as much. Just finished round 4 of r-cvp and all activity is down by 2/3rds in the abdomen according to my midway pet scan after round 3. No activity in the shoulder or groin. John

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Good morning you two!
Thanks for sharing the info! When my tumors start shrinking this info will be so helpful!!! Right now I have 4 busy little bee's running through-out my house cleaning, and one "nosey" bee hovering over my shoulder(eaves dropping) while I type...ha! She thinks she's the "queen" bee and just here to look cute...ouch...she just smacked my head..ha! I'm not allowed to leave my computer chair at the moment nor am I allowed to help with the cleaning...ho-hum, so here I sit. Earlier... two of my neighbors came to the door to see if everything was ok with me. They saw 5 cars at the house and worried something bad had happened to me during the night. Guess I should have warned them ahead of time that my friends were coming today. I'll post later tonight how the rest of the day goes(if I survive..ha!)...it's close to noon, so I better get lunch layed out if "queenie" here will let me go to the kitchen. Hope your having a good Saturday...noisy, fun and crazy here!
Love...Sue

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

I really appreciate you telling me about your experience. It really does help when I can relate to someone who has been through it and knows what I am feeling (and I have only just started).
But what you say makes me feel better - that it is working as it is supposed to and all I have to do is hang on for the ride.
Thanks,
Tom

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Hi Tom,
I have been thinking about you all week wondering how your first treatment went. I get my first next Thursday. Knowing how people feel after the first go-around is soooo helpful and takes alot of the fear away...epecially when they report back in the first week! "Thank you"!!! My tumors are in my groin, abdomen and neck. Reading what you, Mary and John have shared today about "feelings" you are experiencing as the tumors shrink will help me understand whats going on when mine start to shrink. Take care and rest! My prayers are with you!
Sue

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

Sue, thanks for your prayers. Be assured that mine and Connie's are with you as well.
I did my first treatment in the hospital as an in-patient. Due to the size and extent of my tumors, my doc was good with that. I began my chemo treatment with some pre-meds to help things along at about 3:30 PM on Monday. We finished the last bag and hung the general fluids at 4:00 AM! Now that was a long night.

But it went very well, with some slight palpitation on the R. So it took 6 hours to load up the R before I even got to the CHOP. But comfort wise there were no issues and the staff was great. Poor Connie in the cot next to me ended up staying up most of the night with me, but without having the additional stimulus of hoses and cords. I am concerned that this is going to be even tougher on her than on me. She is an RN and is a caregiver at heart. That can get to be quite a burden in this situation.

I talked to a friend earlier today who has been through this (and more) and he said something that gave me a different perspective. He said that I'll look back at this, once it is done, as a really good year.
I'm going to accept that for myself, and I hope that you can take some heart from it as well. Thursday is the beginning for you as Monday was for me this week.
We'll all be praying your way.
Tom

truckingalong
Posts: 444
Joined: Aug 2010

Tom,

Thank you for mentioning your friend's comment about having a good year after it is done. It took me one year to get a proper diagnosis of Hodgins Lymphoma and now this will be a great year for me - a new journey. I wish you the best ever to recover and prosper!

Liz

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Holy Cow. Talk about marathon chemo, good grief! Very grateful you had a bed. I would LOVE to have a bed while doing mine, but the recliners will just have to do hahaha.

Good luck to you, and I really hope the next time will be much faster. I reacted to the rituxan this time around and the quickest they have me done is about 3.50 hours, the first time I got it down to 2 hours.

I'll keep you in my prayers and hope you are still doing well. Take care, get lots of sleep, eat well, and pay attention to germs!

Beth

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

I am impressed that you have been able to take so much in such a short time.
My next one is scheduled for 9/3, and it will be done at the infusion center in the recliner. My doc was really good about doing the first one in hospital. (His comment about my abdominal tumor was, "impressive".) I think that they just went slow because they could. Hey, I'll take what I can get.
Next time I'm sure it will be done much faster - the infusion center is only open during business hours. However, I don't think that I'm going to try to reach your record.
I don't know how many sessions you have left, but based on your join date and number of posts, I would say you're an expert.

One day I hope to have a sip of champagne in toast to each one of you who are so helpful and supportive.

Thanks and cheers!
Tom

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Hi Tom,

Hope you are feeling well and having no trouble with the treatment. I think the first time around the rituxan took around 4 hours then like another hour to hour and a half for the chemo....long days. By about treatment 4 is when the time for rituxan got to 2 hours and the entire time I did maintenance it seemed fairly short.

I truly hope that you do not follow my path my friend. I can't seem to get to strong remission, but hopefully this time will be longer, stronger and complete.

Take care,
Beth

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Are they drenching night sweats or just hot flashes? Hot flashes were almost immediate effect for me from chemo...........they are the gift that keeps on giving. I am now post menopausal at 46 or rather at 42 when I started this trip.

Tell your onc about the sweats though. Anything that seems odd you should tell them, even when you think it's nothing.

Take care

Beth

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

Hi Beth,

Actually, I really don't know what the night sweats are. They are not even close to being full body drenching sweats. Just upper body and head sweating. I notice damp pillow and upper sheets when I get up and down during the night - but nothing uncomfortable. For all I know they could be caused by keeping too much cover over me. I tend to wrap myself up at night since this started. Maybe just a comfort thing.

Anyway, if that's the worst there is - I am very happy!

My best to all!
Tom

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

When I asked my MD about night sweats he said the way to tell the difference was the drenching part. He said what he was talking about would be an "event" with having to change the sheets, pj's etc. and that I would know it if I had it. That was helpful to me. I never had anything like that, more like what you described and it never lasted long. I too like to snuggle up but found if I put one leg out it would go away. I would still mention it though just cuz it's best and you can leave your appointments without worrying about anything. Start your list. Good luck. Mary

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Hey Tom,

Welcome to the world of Hot Flashing!! Such a treat aren't they? My father has prostate cancer and also gets hot flashes from his treatment. He now has much sympathy for women going through menopause and the hot flashes.

You're right, they don't last long...but whew. I lay down at night and after about 5 minutes my pillow starts "steaming". I just flip it over, throw the covers off for a couple minutes, stick a leg out from under the covers then I'm good and can go to sleep. This is an EVERY night routine for me. LOL

Take care, keep a fan handy, or the freezer works really well too depending on how bad it gets LOL.

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

A friend of mine has hot flashes due to menopause and uses a product called, "The Chillo". It's a plastic pad filled with a jelly like substance. You place it in the freezer during the day and in your pillow case, along with your pillow, when you go to sleep. She claims it worked and got it on drugstore.com Kellie

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