Hypercalcemia

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3/6/2012 10:29pm
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Replies: 10

I would like to share with you something that has come up for me as a consequence of metastatic cancer that I never heard of before, and since I've been at this for 9 years, it is a bit surprising. I would like to inform you all with metastatic cancer that this might happen to you as well.

 The condition is hypercalcemia--too much calcium in the blood. In my case, I ended up in the hospital for 3 days while they figured out the situation and what to do about it. They think it is caused by the melanoma itself, which releases some substance that encourages calcium to be leached out of my bones. For anybody this is pretty serious, but for an old lady like me, it's scary. I will end up getting zometa, which only will slow down the leaching. Nothing can replace the calcium already leached out. Be sure to note that I do not have any bone mets, if my hypercalcemia is caused by cancer, it is all soft tissue cancer.

 The possible symptoms are wide-ranging: for e.g., confusion, memory loss, constipation, abdominal pain, kidney stones, etc. etc. The condition of hypercalcemia is discovered by a simple blood test.

Has anyone encountered hypercalcemia before?

Esther

 

Molly- CURE OM - (3/6/2012 - 10:41pm)

Hey Esther!

My mom (who does not have OM) has been dealing with elevated calcium levels for the past 3 years. She recently had surgery to remove part of her thyroid gland with an exploration of the parathyroid glands, which are the calcium producing glands within the body. In her case they are unable to find the cause for her hypercalcemia. I am assuming that your physicians have checked your parathyroid hormones via a blood test and if that is elevated, I am hoping that they did either a CT scan or an ultrasound of your neck.

I am sorry that you had to spend some time in the hospital recently. Here's to hoping they can get those levels fixed fast!

Molly Stoffa

The battle was lost, but the war must go on until a cure is found.

Molly- CURE OM - (3/6/2012 - 10:41pm)

Hey Esther!

My mom (who does not have OM) has been dealing with elevated calcium levels for the past 3 years. She recently had surgery to remove part of her thyroid gland with an exploration of the parathyroid glands, which are the calcium producing glands within the body. In her case they are unable to find the cause for her hypercalcemia. I am assuming that your physicians have checked your parathyroid hormones via a blood test and if that is elevated, I am hoping that they did either a CT scan or an ultrasound of your neck.

I am sorry that you had to spend some time in the hospital recently. Here's to hoping they can get those levels fixed fast!

Molly Stoffa

The battle was lost, but the war must go on until a cure is found.

Sara - CURE OM - (3/7/2012 - 4:04am)

Dear Esther,

I am so sorry you have to deal with this now-- how frustrating.  As you probably know, there are many possible causes for elevated calcium, and particularly, in cancer.  As Molly describes, calcium is regulated by the parathyroid, but cancer can sometimes mimic this and produce a hormore similar to the parathyroid hormone-- it is referred to as Parathyroid Hormone- related protein (PTH-rp).  This is not my area of expertise, but I do know melanoma can do this.  Melanoma can also cause elevated calcium in other ways-- for example-- as you point out, bone mets can cause this, but it sounds like you have ruled this out.

Do you feel you are in good hands with your doctors and that they are answering your questions etc.?  How are you feeling physically and emotionally?  Have you had the zometa yet?  Gregg received Zometa after he had bone mets... he felt like he had the flu for a couple days after receiving it for the first few times and then those symptoms completely went away for the next couple of years he received it....

Just a thought-- but, as you know, this CURE OM forum is a subset of the larger Melanoma Patients Information Page (MPIP-- the oldest and largest online patient community for patients affected by melanoma)... since melanoma, in general, can produce elevated PTH-rp and elevated calcium levels, you may want to post this to the general forum too and see what you learn.... 

Thinking of you,

Sara - CURE OM

lak - (3/7/2012 - 4:52am)

Esther - i m sorry you have this problem- I agree with everything Sara has said. i also agree with seeing if you can get Zometa. I have it because I have had steroids for over a year and now I am off them its hard to see the point in stopping the infusions. I dont have them every 6 weeks as I have no bone mets but just when my markers go  up. Which is about every 4 months. I have no side effects from the infusions. Either ipilimumab or zometa infusions have altered the course of my disease. I was started on thyroxine in October as ipi ( a year after first dose) knocked my TSH hormone down. After the ablation of my liver tumours my calcium slghtly exceeded normal but I was very sick , ablation syndrome and sepsis and my T4 levels were slightly high. (too much thyroxine can also cause raised Ca. ) Luckily for me taking antibiotics and being patient all has returned to normal.

Do hope you can get this challenge sorted.

 

Lesley

Sara - CURE OM - (3/7/2012 - 4:23pm)

Lesley,

Good to hear from you and to know that you are doing well!  Will we get to see you in June at the CURE OM patient and caregiver meeting in Philly?  Would be wonderful to finally meet in person.

Thinking of you,

Sara - CURE OM

edamaser - (3/7/2012 - 5:36pm)

Molly, Sara, and Lesley,

Thank you for responding to my post, and so quickly.  I really appreciate all of your comments.

The docs in the hospital ruled out parathyroid involvement first thing.  They gave me pamidronate while I was in the hospital.  The day after I felt really sick:  fever, vomiting, extremely weak, no appetite, etc.  Is that flu-like?  It went on for a whole day & night, in the morning I felt fine.  Is this the way Gregg responded to Zometa?

I am also seeing an Endocrinologist who specializes in bones.  He suggested that I take a small dose of Prednisone to see if it brings down the Calcium.  I took it for about 10 days, and it did indeed bring down the Calcium.  But then I consulted Dr. Weber (at Moffitt), who said I should go off it immediately because it would interfere with Yervoy.  So now the plan is to give me Zometa.  They will give me Benedryl beforehand to try to forestall the flu-like reaction I had to Prednisone.  They plan to monitor the Calcium in the blood and to give me Zometa whenever it goes up.  The bone doc thought that prednisone was a more effective way of diminishing Calcium loss, but he, of course, deferred to Dr. Weber.  Does all this sound reasonable?

The care I am receiving is all at Ohio State University Med. Center (one of two Cancer approved Centers--I forget the exact title--in Ohio.  It's really hard for a lay person to figure out whether they are getting good care or not.  Everyone seemed pretty mystified the first few days in the hospital--which honesty I really appreciate, rather than have them put me off with no explanation, I much prefer an "I don't know" response.  At the end they settled on an hypothesis of the cancer causing the increased Calcium, as an admittedly default explanation, because they couldn't find any other reason.

Sara, your idea of posting this question on the larger panel is a good one, and I will do so.

In answer to your question, Sara, physically I'm doing a bit better (the longer out I go without any treatment, the better I feel because the fewer side effects I have).  But emotionally I've been pretty down.  We've had a slew of bad news lately about friends and family dying, getting Alzheimer's, getting pancreatic cancer, etc.  It feels like an epidemic.

Also, the last scans I had 4 weeks ago showed a "something" in my brain measuring 4mm.  I get re-brain scanned this Friday.  So, yes emotionally I'm not great.

Thanks for your interest and concern.  It always feels good to talk to others who truly understand.

Esther

Nan in Nebraska - (3/7/2012 - 7:29pm)

Dear Esther,

You've had quite a tough time lately-I'm sorry. You are such a strong person. I'm sure you don't remember, but you and I e-mailed when I first started my journey 10 yrs ago and you were such an inspiration.

When did you finish your course of Ipi? I have noted, and you probably have too, from postings on the Melanoma International board that there have been others, Jonathan being one of them, that have had brain tumors after Ipi, had them gamma knifed, and are doing fine with no more brain lesions. Also, when I had my first scans after Ipi (1/11), it showed more lesions and enlarged existing ones in my liver, and abdominal lymphadenopathy, etc. but by March lesions had regressed and things have been stable since then. I have scans March 12th so we'll see then. There was some confusion last time as my local radiologist said stable disease and Dr. Sato's team thought there was some slight progression in peritoneal mets. Doc I'd seen in Denver said to wait and rescan as he has a patient 3 yrs. out whose tumors wax and wane. I would think that would be more of a possibility of happening in the begining, not a year out??

I'm also planning on attending the conference in June. I can't wait to meet you, Sara, Lesley and others.

Hang in there-you are a FIGHTER!

Hugs,

Nan

edamaser - (3/7/2012 - 8:18pm)

Hi Nan,

Thanks so much for writing.  The part about ipi is very encouraging.  I have observed that there have been several people who have had post-ipi brain mets.  Problem is, do you treat (stereotactic radiation), or do you wait to see if they shrink--a sign that they were inflammation?  I guess one dares not wait.  As if all the rest of this isn't scary enough, brain is even scarier.

I had my last ipi infusion on Jan. 13th, so I'm just 2 months out.  I have heard of others who have had responses to ipi of both side-effects, as well as cancer effects, a year out.  Dr. Weber keeps saying "it's a strange drug."

Hope we all meet in Phila.

Esther

Sara - CURE OM - (3/8/2012 - 1:41am)

Hi Esther... wow-- you are going through so much right now-- I am so sorry.  As for the brain met.  Gregg had a single lesion treated by cyberknife before it was symptomatic and it was a really "easy" single treatment... if you decide to treat yours, I hope yours is as "simple" as this was for Gregg...  let us know what you end up thinking and doing.

As for zometa-- Gregg would have fever and get aches and chills for a day or two after and then felt better... as I said, though, that went away after his first few doses...

From what I can tell, it sounds like you are getting good care-- your docs are staying on top of things, they are listening to you (at least it sounds as if they are from what you are saying), and they are communicating with each other-- those are some of the qualities I think about in term of getting good care...

Let us know what you find out on Friday... I will be thinking of you and sending all good vibes.

I look forward to seeing you, Nan, Lesley and everyone else in Philly in June.  We are working very diligently to make this a productive, informative, and helpful meeting to all.  Our CURE OM scientific meeting that we are holding in May (for physicians and researchers) is really shaping up to be a great meeting so I think we will have a lot of new and exciting news with the patient community at our meeting in June.

Take good care everyone,

Sara - CURE OM

dailyrx - (11/28/2012 - 5:33pm)

Esther,

One way to treat hyperalcemia is with Zometa.  You can learn more about it here: http://www.rxwiki.com/zometa