Conflict in Diagnoses

Brian83 · Regular Joined: 04 Jun 2008 Posts: 10

Who can tell me about the rash and itch associated with liver cancer or other liver disease? I have welts all over the trunk of my body and on my legs. I have very dry, itchy skin, flaky like dandruff. Lotions don't help much.

(The one that does help is Eucerin Calming Creme. There are several Eucerin products and this is the best of them. Also, Aveeno Anti Itch Concentrated Lotion will help limited spots, but isn't so good overall.)

I have a long story to tell about my saga since January with doctors either misdiagnosing my problem or prescribing the wrong medicine. Maybe someone who's presently undergoing diagnosis or treatment for liver disease can shed some light on what's happening.

Thanks.

Kaye · New User Joined: 02 Apr 2008 Posts: 3

My husband had these 'spots' which the dr called spider nivea. They appeared one by one over about 18 months and escalated as his hcc became acute. He also suffered uncontrollable itching around the same time. The spots were on his upper body.

brainman · Posted: Sun Jun 08, 2008 1:03 am Post subject: Re: Conflict in Diagnoses

Has a doctor seen your rash? It might be anything. My father and many other cancer patients, had to fight shingles at one point.

You are in my thoughts and prayers.
_________________
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Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
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Brian83 · Regular Joined: 04 Jun 2008 Posts: 10

Ha! Would you believe, as of now TEN, yes, that's one-zero, (10) MDs have looked at it! Cool

They can't all be experts, and I understand. But it was the allergist who first tumbled to the seriousness of my symptoms and ordered more extensive blood tests than my original GP.

BTW, I keep a running record of all the lab work I've had done since 2001 just so I can compare results over time. It seems that most physicians I've encountered are still keeping paper "charts" that they simply don't have time to review when the patient comes in with a new ailment and frequently forget what earlier symptoms or complaints were.

The VA has gone computerized. They recently printed out for me ALL of my lab test results and the physician's notes regarding visits back to 2001, an immense help in tracking how resilts vary from time to time.

They can even provide graphs. I can now see how my ALP has increased over the years - steadily upward, with one big spike in 2004, that led to the discovery of the liver tumor. more or less round at 9 cm, then, 10 cm x 14 cm now. ALP stood at 188 on April 19. {"Normal range supposedly is 50-136.) Before this recent spike, it was running between 117 to 137 with one slight bump to 148 in June of '05.

Knowing this, if the itch is being caused by impaired liver function, it's one thing. But if it's caused by something else, I want to know it before I let somebody slice me open.

The GP has now recommended I get a PET scan and I'll follow up on that Monday.

In the meantime, has anyone had any experience with a PET scan, and what might be the efficacy of it?

Brian83 · Regular Joined: 04 Jun 2008 Posts: 10

I started off by asking about the experience of others with rashes supposedly associated with liver cancer. There doesn't seem to be a lot published regarding this phenomenon and I'm still not well informed.

As reported above, I'm to see a surgeon on Friday (re-scheduled from yesterday so I'm still in the dark) and plan to ask her about PET scans. I don't want to leap into major surgery if cancer exists elsewhere and will only pop up after the body is weakened from that surgery.

My welts have spread all over and itch like crazy, so today I gave the Internet another shot, this time looking up hives instead of rash. What I found fit my symptoms to a "t". An excerpt appears below.

I still can't give a link because I'm too new here. But Google "urticaria (hives)" and click on the reference to aocd.org for the complete article.

(You'll also find some "folk cures" that I don't give much credence.)

I'm getting a skin biopsy tomorrow and I'm taking a copy of the excerpt to the dermatologist. Maybe he'll then revise his opinion that I have "dry skin," his first diagnosis.

I'm hoping that the biopsy will rule out a connection between the cancer and the hives. If so, it may revise my outlook toward the surgery.

Stay tuned. Something useful may yet turn up.

======================================

Occasionally, a person will continue to have hives for many years. These hives, called chronic urticaria, can be one of the most frustrating problems dermatologists see in their patients. This is defined as hives lasting longer than 6 weeks. Patients like this come in miserable and worried with this problem, often having seen multiple specialists. Neither the patient nor the doctor can determine the cause of the hives. Patients will often say, "It has got to be something causing these hives." The truth is hard to accept for some patients.

In the overwhelming majority of cases it is not "something" causing the chronic hives, it is "nothing." That is, in about 95% of chronic hives cases, the hives are "idiopathic" (a medical term that means there is no discernible cause). Because of those 5% of cases with a cause, it is worthwhile to see a physician to determine if any underlying disease is present (e.g. thyroid problems, liver problems, skin diseases, sinusitis) or if there is an allergic cause (i.e. a reaction to a drug, insect, food, etc.). This can be accomplished by a good history and physical, a few blood and urine tests and sometimes a skin biopsy. Some patients with chronic hives and elevated anti-thyroid antibodies in the blood improve when given thyroid supplement even if the thyroid function is normal.

In about half of patients with chronic idiopathic hives, the explanation is that body's immune system is, in a sense, overactive. The urticaria is "autoimmune". The immune system is attacking the normal tissues of the body and causing hives as a result. We know certain urticaria sufferers have other signs of autoimmune problems. Some have autoimmune thyroid disease, vitiligo, swollen joints, or certain abnormalities in the blood (especially the ANA test). A new treatment has recently emerged for autoimmune urticaria. This is the use of Plaquenil, a drug originally used for malaria. In a recent trial 83% improved or cleared completely when used for three months or more.

So, in many patients with chronic hives, there is really no exposure (drug, food, insect, chemical) to blame for the urticaria. The patient must understand and accept this for their ideal management. Basically, all that needs to be done is treat the hives. The main treatment of hives is antihistamines, and they will work if they are used properly. Common reasons for lack of effectiveness of antihistamines are 1) the particular antihistamine used is not strong enough 2) the antihistamine is not used in a high enough dose 3) the antihistamines are not continued for a long enough period.

The most well tolerated initial treatment is the non-sedating antihistamine Claritin. Zyrtec is similar but may sometimes cause sedation. If that doesn't eliminate the hives, a sedating-type of antihistamine (hydroxyzine, cyproheptadine or doxepin) is added at night. High doses may be needed and this will cause sedation. Fortunately, most patients will become less affected by sedation after they have taken the drug regularly for a while.

If that doesn't work, some doctors may try a short course of cortisone (steroids) to clear the hives completely. Then the patient can maintain the effect with the much safer antihistamines, since steroids have significant side effects if used long term.

A drug used for psoriasis and kidney transplants, cyclosporin, is almost always effective in clearing even the most severe cases of chronic hives at low doses. However, it causes significant side effects if taken for a long time.

There are other medications that may be added to the antihistamines, but these non-standard therapies are not always effective. However, if the hives are not responding, they are worth a try. Examples are anti-acid pills (Tagamet, Zantac), dapsone and sulfasalazine (anti-inflammatory antibiotics), nifedipine (a blood pressure medicine), Accolate (an asthma drug), colchicine (a drug for gout), and several others.

The important thing is that the patient is given enough medication (antihistamines, perhaps in conjunction with other drugs) to suppress the hives. Whatever it is that controls a patients hives, should be the daily regimen, taking the drugs every day, whether or not they have the hives on any given day. The idea is that one is preventing the hives from breaking out.

Some doctors suggest that medications should be continued for long periods - perhaps even a month after the hives have disappeared. Again, the exception to this is the cortisone/steroid-type medications, which should only be used for short periods initially to quiet down the urticaria. Remember that one must work closely with their doctor to find a medication regimen that suppresses the hives until they resolve on their own.

=================================

Brian83 · Regular Joined: 04 Jun 2008 Posts: 10

Dermatologist claims the rash is NOT hives. Says hives have the characteristic of coming and going. This rash is like a persistent sunburn. A sunburn, of course, goes away, and after the peeling, the itch goes away as well.

Yesterday, he ordered ultraviolet light treatments anf I had a brief exposure, less than a minute. I take another tomorrow. The regimen is 2-3 times a week until it goes away. The UVA UMB specialist says it works, so I'll take her word for it.

In the meantime, I finally found Lanancane on the shelf at the drugstore and it seems to relieve the itching over a longer period of time than anything else. The Eucerin Calming Creme is the only thing I've found to hold moisture in. the UVA UMB specialist and her supervisor also agreed that I do not have hives.

Zyrtec, taken at bedtime, seems to help with the itching a little bit. The problem is that it's sedating and that carries into the next day.

I see there are quite a few who view the various threads. I'm sure they have more than a passing, second-hand interest. It would be helpful to me to exchange information with others who are actually afflicted - if they feel like it. Maybe by doing so, we'll be able to give one another support and ideas on how to mitigate the process. It's not all doom and gloom. It's natural, and we need to be better at dealing with it.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1403

Hi Brian,

I really don't know too much about this itching, even though my Dad had liver cancer. He never experienced this issue.

I would have guessed hives too based on reading your initial explanation. The doc is right though, hives come and go.

I will tell you, for what it is worth, that my son told me that skin and nail issues are often a sign of liver problems and I do have minor liver issues. I have terrible eczema (I think) patches on my arms, head, and other areas that often go through a cyclical type of thing. Calm, itchy, flaky, itchy, skin cracking, etc. The skin texture never looks normal anymore. Sometimes it seems like it's all the time. Itching seems worse at night. Do you have a lot of skin flaking when you scratch? Does it itch beyond belief? I began taking Vitamin D after researching that it may be of benefit for skin conditions and it seemed to calm things just a bit.

Unfortunately, maybe you'll be able to help me better than I can help you. I'd love to hear if the UVA treatments help the problem.

I am very sorry to hear that this added insult has occurred with your cancer diagnosis. It's a maddening complication.

Keep us posted on your success with this new treatment.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

Brian83 · Regular Joined: 04 Jun 2008 Posts: 10

Saw the surgeon today and showed her my redness. She's No. 10 of MDs who are puzzled as to what it is. She said she'd never seen anything like it associated with liver disease. Bummer!

Got another UV treatment today. Have more next week. MWF - only a couple of minutes exposure each time. The specialist assures me that it will do the trick. Only when??? The only "name" anyone can come up with is "eczema." Maybe it's a whole new disease and it'll be named after me! Laughing

Also next week am getting another CT scan of chest head and bone to rule out existence of cancer somewhere else that'll just be aggravated by liver surgery. Surgeon says that if she can get it all out (she thinks she can, but I wonder), I've got 50-50 odds of surviving 5 years. If I don't have the surgery, it's pretty definite I'll be gone in that time. But what's the life expectancy of an 83 year old anyway? Odds I might beat, but statistics are hard to evade. (Look up the Social Security Actuary stats.)

Itch? You bet! Several things seem to have a calming effect. Cool water, of course. Eucerin Calming Creme and other non-prescription lotions and creams. Lanacane seems to be pretty good. It'll calm the itch longer than Gold Bond or Eucerin products other then the Calming Creme. Prescription products such as Fluticisone and Protopic don't do much for very long. This whole mess started when I used Desoximetasone in the groin area. I'd suspect the steriods, but Predisone knocked the rash back initially. The docs don't want me on it and I haven't used it in a month.

Surgery appears to be my best bet right now. I sure hope they figure out the rash problem before then. Gotta talk with the allergist and oncologist again before I go for that, though.

To make things worse, but not bad, some ketoses popped out and I had them frozen a couple of days ago.

If it ain't one thing it's another. But If I'm educated, I can deal with most anything. Thank goodness for the Internet!

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