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Something I should be worried about?

rls67
Posts: 127
Joined: Nov 2012

My wife restarted folfiri after being told there is no more new treatment to give her anymore. She went back on it last friday. I noticed some minor twitching from her. But last night around two AM. She started having some serious twitching. Grabbing at her clothes and blanket and trying to take them off. She also started talking to someone in her sleep. I believe she is talking to her parents like when she was a little girl. It is scaring me pretty bad. Should I call her dr and let them know? She also has been sleeping almost non stop since friday night. She never had this problem when she first was on folfiri last summer. Is this something to be worried about? Please help!

Chelsea71
Posts: 1170
Joined: Sep 2012

I have not come across this before.  If she is on pain medication, I would think this could be a likely side effect.  Especially if it's recently been increased.  I would not think its related to the Folfiri but I could easily be wrong.  I've never heard of this problem.  I would imagine its extremely upsetting to witness.  Is she hallucinating?  I am sure there will soon be others chiming in who know something about this.

LivinginNH's picture
LivinginNH
Posts: 1294
Joined: Apr 2010

 

Oh dear....I'm so sorry.  I've sent you a PM on this.

Take care,

Cynthia

Lovekitties's picture
Lovekitties
Posts: 2937
Joined: Jan 2010

The signs you are seeing do not seem to be due to the chemo.

Please call her doctor immediately and relate these signs to him/her.  He/she will know how best to proceed.

Hugs and peace to you both.

Marie who loves kitties

lp1964's picture
lp1964
Posts: 852
Joined: Jun 2013

...signs of all kinds of things and I don't think that any of us qualified to know. 

Call her doctor and follow up. I wish you quick resolution to this.

Laz

rls67
Posts: 127
Joined: Nov 2012

We are sitting in the dr office waiting on the blood results to come back. She is so tired and a little out of it. i will keep you informed.

Chelsea71
Posts: 1170
Joined: Sep 2012

Wishing for the very best.  Thanks for keeping us updated. 

annalexandria's picture
annalexandria
Posts: 2227
Joined: Oct 2011

We're thinking of you both.

jen2012
Posts: 1197
Joined: Aug 2012

My husband is on pretty high dose of fentynal (275) and dilalaud ( up to 12 mg every 3 hrs)  hes had a lot of twitching.  Painful with his femur fracture.  They put him on a nerve med..neurotin? and also baclofen as a muscle relaxant.  It seems the baclofen really  knocks him out.  He stopped taking it and had more pain so he started it again yesterday and slept all day.  Deep sleep and hallucinating.   I hope they are giving you answers and help.

rls67
Posts: 127
Joined: Nov 2012

You know what i am going through, you are going through it yourself. I do hope he finds some comfort.

marbleotis's picture
marbleotis
Posts: 486
Joined: Mar 2012

Call her Onc and let him/her know.  This could be a million things.  Drs have after hours numbers so I would definetly call with anything odd.  They need to know all this type of info.

Please keep us posted.

rls67
Posts: 127
Joined: Nov 2012

The dr says her calcium level are pretty high. He said that might be the reason for her twitches and hallucinations. He said he is worried about her high calcium levels. He said it could be because her cancer might have spread. They gave her an IV to help lower the calcium level. He said they usually give to people with bone cancer to strengthen there bones. She is so tired, the dr is setting up a nursing service to come to our house to help with pain control. She is sleeping now and still twitching. Thank you all for your support. I truly appreciate it.

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

Sometimes doctors don't explain everything very well and I am sure you have not felt much like researching yourself, so here is some information about elevated calcium levels. I always think the more we understand, the more we are prepared to deal with and face challenging complications. Sometimes it seems our helpless feelings come from not having sufficent information to understand what is happening in a crisis ... at least this is the way it was for me as a caregiver. My heart goes out to you, it is extremely challenging to watch your loved one transition away from you. Hold tight and try to be in the present moments as much as possible, as difficult as those present moments may be. Push the doctors to do what they can for her ... being armed with information about her condition and potential treatments will help you advocate for her. You did exactly the right thing to seek help for your wife and now her doctors can help her feel better. Sending strength your way. 

Peace. ~ Cynthia

Why people with cancer get hypercalcaemia: Between 10 and 20 out of every 100 people with cancer develop hypercalcaemia. This usually happens in the advanced stages of cancer. The cancer makes calcium leak out into the bloodstream from the bones, so the level in the blood gets too high. The cancer may also affect the amount of calcium that your kidneys are able to get rid of. Dehydration or having diarrhea may also increase calcium levels. If not treated, hypercalcaemia can make one more and more drowsy until they are sleeping nearly all the time. 

Symptoms of hypercalcaemia: 

It is not always easy for a doctor to spot hypercalcaemia. One may not have any specific symptoms; it may be just feeling a bit unwell or very tired. And the severity of symptoms doesn’t always match up to the calcium level in the blood. People with a slightly high calcium level can have very severe symptoms, and people with a very high calcium level may only have mild symptoms. Many of the symptoms are common in the advanced stages of cancer, even in people who do not have hypercalcaemia.

  • Feeling weak
  • Extreme tiredness and lethargy

  • Not wanting to eat much 
  • Constipation
  • Loss of concentration and interest in doing things
  • Mild confusion

If the hypercalcaemia is not treated the symptoms become much worse and can include

  • Feeling and being sick
  • Drowsiness
  • Passing large amounts of urine
  • Feeling very thirsty
  • Dehydration
  • Confusion
  • Agitation
  • Muscle spasms and tremors
  • Bone pain and weakness
  • Irregular heart beat
  • Difficulty thinking and speaking clearly
  • Coma, if not treated

Because calcium plays a role in the normal working of the brain and spinal cord, patients with severe hypercalcaemia may also

  • Have seizures
  • Be unable to coordinate muscle movement, which can affect walking, talking and eating
  • Have changes in personality
  • Have hallucinations

Managing high calcium: The main aims of hypercalcaemia treatment are to lower the blood calcium levels and to relieve the symptoms. One will need treatment from their specialist and might have to spend a day or two in the hospital to get calcium levels down. The main treatments for high calcium levels are

  • Fluids: through a drip to help flush the extra calcium out of the system. Drinking plenty of fluid will help too, if one can manage it. 
  • Bisphosphonates: are very effective drugs for helping to get calcium levels down. One has to have some of these drugs through a drip into a vein, but others come as tablets. Which needed depends on how high the calcium levels are. 
  • Calcitonin: another drug that may help stop the breakdown of bone. This drug is an injection. One may also have drugs to help relieve hypercalcaemia symptoms, such as sickness, constipation, pain or confusion.  

Deciding on treatment: The type of treatment depends on how high the calcium levels are and how severe the symptoms are. Moderate to severe hypercalcaemia, or severe symptoms, the doctor will need to treat it urgently with fluids and bisphosphonate drugs. Mild hypercalcaemia, will still need treatment but less urgently. If one is able to drink plenty of fluids, they may just need the bisphosphonate treatment. 

 

Treatment relieves some symptoms more quickly than others. For example, sickness, constipation and thirst are much easier to relieve than tiredness and loss of appetite. If cancer is very advanced and in the terminal stage, it will probably not be possible to control the hypercalcaemia permanently. But the doctors will do all they can to help make one as comfortable as possible.

Follow up: Once blood calcium levels go back to normal, the doctor will want to be watchful and do regular blood and urine tests to make sure the treatment is still working. If at any time the symptoms of hypercalcaemia come back, it is very important to see the doctor as soon as possible. Even if something else is causing the symptoms it is better to see the doctor to find out for sure.

One may worry about eating foods that contain calcium if they have hypercalcaemia or think they may be at risk of it. But cutting down on these foods will not help hypercalcaemia that is caused by cancer. It will not make any difference to the calcium levels. Do talk to the doctor or nurse if you are concerned about diet. And make sure to check with the doctor before taking any vitamin or mineral supplements.

 

rls67
Posts: 127
Joined: Nov 2012

that is extremely helpful. You gave me much more info than the doctor. I truly appreciate this.

jen2012
Posts: 1197
Joined: Aug 2012

They must have checked her for dehydration and electrolyte levels right?       Glad they are sending a visiting nurse to help so you don't have to drag her out of the house when she feels crappy. 

rls67
Posts: 127
Joined: Nov 2012

To be honost Jen, I am not sure if they checked for that. I assume they must have. I hope they did. This place is so helpful. We are so lucky to have this.

annalexandria's picture
annalexandria
Posts: 2227
Joined: Oct 2011

I know I got pretty out of whack when I got dehydrated during tx.  Has she been urinating on a relatively frequent basis?  I think from what I remember she should be peeing about every 8 hours.  Another way to check is to pinch (gently!) the skin on her arm..if it goes back into place more slowly than is normal, that suggest dehydration.

If she is dehydrated, that could def add to her symptoms.  And she may need IV hydration.  I know I did on more than one occasion.

UncleBuddy
Posts: 609
Joined: Aug 2013

I hope you get your answers and she starts feeling better.

Lin

rls67
Posts: 127
Joined: Nov 2012

She slept much better last night. Not much twitching and no talking in her sleep. It was a long day at the doctors yesterday. The IV medicine for her high calcium levels must have worked. She looks a LOT better this morning. Thank GOD for that. And thank you again for asking. This place helped me SO much yesterday. There are awesome people here!

Chelsea71
Posts: 1170
Joined: Sep 2012

That's great news.  Hopefully she will continue to improve.  Very unsettling feeling for the spouse/caregiver when we see these problems and don't know what to do.   Steve developed a lot of complications and I spent countless hours on line trying to figure out what the hell was going on.  Very frustrating and scary.  Not knowing if you should make the dreaded trip to the ER etc...  Although I miss Steve terribly I can honestly say I don't miss those situations.

rls67
Posts: 127
Joined: Nov 2012

I totally understand. I hate that helpless feeling.

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

I had primary hyperparathyroidism - an over-active parathyroid gland - that caused my blood calcium levels to increase.  This was found and treated (removal of one of my parathyroid glands) before I was diagnosed with cancer (tho I probably had cancer at that point.)  I don't know if it was related to my cancer; often it just is hyperparathyroidism.  Please be sure that the parathyroid hormone levels are checked, because if that is the cause, then the treatments to reduce calcium will have no lasting effect.

rls67
Posts: 127
Joined: Nov 2012

I will definatly ask the dr about that on friday. I never would have thought to ask that.

UncleBuddy
Posts: 609
Joined: Aug 2013

I'm glad she's feeling better.

Lin

rls67
Posts: 127
Joined: Nov 2012

Thanks lin. She seems to be on the right track. She had another pretty good day yesterday.

Gavin63
Posts: 98
Joined: Aug 2013

 

So sorry to hear the condition of your wife. I can’t be of any help with advice as I don’t know much about what she is going through as I am fairly new in this journey. But you had plenty of good advice from others.

Sending my prayers for her recovery from the difficulties that she is facing. Stay positive.

Gavin  

rls67
Posts: 127
Joined: Nov 2012

I appreciate the kind words and the caring. Sometimes when I feel all alone and overwhelmed I come here and remember I am not alone. I know my family, friends and coworkers dont understand, but the people here do.

UncleBuddy
Posts: 609
Joined: Aug 2013

Many people don't understand the stress that caretakers/family go through when it comes to cancer. This group has been my therapy. I also have gotten a lot of sound advice for my brother on this site. People here really care about one another. Many of us are caretakers and are stressed out from taking care of our loved ones, so we understand. It's not easy. It's overwhelming at times. It's frustrating. It makes us anxious, worried and just plain old wiped out. You're not alone. All your feelings are very normal. We feel guilty that we feel this way because it is our family that has the cancer. It's tough on all involved. We're here if you need us. 

I originally opened this account under my brother's nickname (he is stage 4 rectal cancer and NHL survivor) because I was getting info to find out if we are doing right by him (he is intellectually disabled and needs our help) as far as the correct chemo drugs, treatments, etc. Not only did I find all the info I needed, but I found a group of people on here who have been supportive, kind and I now consider my friends. If you need several ears to hear what you're saying, we're here for you.

Lin

annalexandria's picture
annalexandria
Posts: 2227
Joined: Oct 2011

I would say that I think I had the easier experience as a patient.  Not in a physical sense, perhaps, but emotionally.  I was so busy feeling like crap, and getting a bunch of good drugs, that I didn't fully grasp the significance of the big crisis moments we went through.

But my husband and kids understood, and that was tremendously painful for them.

I have so much respect and affection for all of you caregivers out there...each one of you makes this hellish experience a little more bearable for the one you love.

rls67
Posts: 127
Joined: Nov 2012

I don't know how what I would do if I didn't have you all for support. You are the best, n a good note, my wife seems to be doing a lot better. She is comfortable and doing pretty good. I feel like we are all in this together. Thank God for this place.

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