Re: Allergies and other related topics

[Guest guest]

Ellen,

as we've learned we are all different in our cll experiences. Whether I

'actually have' allergies seems to be somewhat elusive. At this point I can

only deal with the symptoms and some of those could be coming from the cll

process as well. Allergies have a certain number of symptoms, regardless of

the irritant. swelling, itching, breathing difficulty,etc, even death by

anaphylaxis. IE. the immune system is being overly taxed. If our immune

system is crippled to one degree or another, these 'symptoms' could be worse, or

strangely take on a different form.

Upper respiratory problems are quite frequent monkey wrenches for most cll

patients at one point or another. Many times these are infections, sometimes

they may not be. But, common they are. From sinus, to bronchitis, to

coughing, to pneumonias. Many CLL'ers live with these. Are some allergies?

Many are infections, but we also know that our mucous membranes are frequently

under attack, either by the cancer substances such as cytokines, or the

inability of the cells to mount effective defenses, or in some cases by

medications or conditions that may dry them out leaving them further vulnerable.

In the case of 'allergies' prior history of a reaction to an irritant is no

guarantee of a future reaction, tho caution may be in order for some irritants,

and equally, a history of no reaction does not rule out one in the future.

The irony in CLL seems to be that while most of our immune system is being

slammed, parts may over react due to the onslaught, hence eliminating further

aggravation can usually only help calm down the over wrought cells. various

chemicals are being released as a result of the cancer and cause symptoms

similar to 'allergies' in many cll'ers. There have been several studies done

using singulaire, and theophyllin that were going in that direction, but I have

not followed them recently. (tho I do take both RX's since they seem to help the

symptoms. the fact that they had been investigated in the cll realm may be

nothing more than interesting, or point to a possible connection ) Other

studies have found that Rituxan (one of our CLL drugs) is sometimes affective in

RA. Auto immune problems are frequently encountered during our courses with

CLL, (many articles on that subject) and we are more at risk for skin cancer;

the skin being part of the immune system.... It's all tied together. As we

discover these connections one would hope that more solutions may be found.

Meanwhile I suppose all we can do is avoid known irritants, be mindful of what

we take in terms of medication, and treat the symptoms as best we can.

all the best, beth fillman

[Guest guest]

Beth,Great response.  I'm currently have a major problem waking up every morning with a hacking cough and spitting up really gross yellow mucous. The onc/hem and my GP are telling me it's because of my post nasal drip.  I'll already on Allegra in the a.m. and Singular in the p.m.  and am suppose to use Nasonex.

I couldn't handle it any more and decided to call my pulmonologist.  He recommended an antibiotic this past Friday and already I'm feeling better.  Will meet with him this afternoon as a follow up.Everyday is a new experience.  Thanks again for you e-mail.

On Mon, Oct 4, 2010 at 11:25 AM, Beth Fillman <bethcat@...> wrote:

 

Ellen,

as we've learned we are all different in our cll experiences. Whether I 'actually have' allergies seems to be somewhat elusive. At this point I can only deal with the symptoms and some of those could be coming from the cll process as well. Allergies have a certain number of symptoms, regardless of the irritant. swelling, itching, breathing difficulty,etc, even death by anaphylaxis. IE. the immune system is being overly taxed. If our immune system is crippled to one degree or another, these 'symptoms' could be worse, or strangely take on a different form.

Upper respiratory problems are quite frequent monkey wrenches for most cll patients at one point or another. Many times these are infections, sometimes they may not be. But, common they are. From sinus, to bronchitis, to coughing, to pneumonias. Many CLL'ers live with these. Are some allergies? Many are infections, but we also know that our mucous membranes are frequently under attack, either by the cancer substances such as cytokines, or the inability of the cells to mount effective defenses, or in some cases by medications or conditions that may dry them out leaving them further vulnerable.

In the case of 'allergies' prior history of a reaction to an irritant is no guarantee of a future reaction, tho caution may be in order for some irritants, and equally, a history of no reaction does not rule out one in the future.

The irony in CLL seems to be that while most of our immune system is being slammed, parts may over react due to the onslaught, hence eliminating further aggravation can usually only help calm down the over wrought cells. various chemicals are being released as a result of the cancer and cause symptoms similar to 'allergies' in many cll'ers. There have been several studies done using singulaire, and theophyllin that were going in that direction, but I have not followed them recently. (tho I do take both RX's since they seem to help the symptoms. the fact that they had been investigated in the cll realm may be nothing more than interesting, or point to a possible connection ) Other studies have found that Rituxan (one of our CLL drugs) is sometimes affective in RA. Auto immune problems are frequently encountered during our courses with CLL, (many articles on that subject) and we are more at risk for skin cancer; the skin being part of the immune system.... It's all tied together. As we discover these connections one would hope that more solutions may be found. Meanwhile I suppose all we can do is avoid known irritants, be mindful of what we take in terms of medication, and treat the symptoms as best we can.

all the best, beth fillman

[Guest guest]

Allan,

too bad he didn't get a culture first.... had similar problems and until we did

culture we weren't sure what we were trying to kill... not a biggie since he

probably chose a broad spectrum drug. What we learned however was that we were

dealing with 'colonies' not true infection level invasion, and the antibiotics

just grew a new colony of yeast.... we let those get a head start with the

antibiotics..... you can still do it after you are off of the drugs for a few

days/weeks depending... I'd suggest that since we all seem to have favorite

bugs....

would also suggest that you read today's post where I threw back some of 's

early writings, still excellent explanations of why we Cll'ers are frequently

plauged by mucous. I've had to learn more than I ever wanted to know about how

this works. You will see that she is suggesting singulair in one. I take

that too, thanks to that post and what it taught me/my doctor. He had had me on

a cortisone inhaler and I was getting worse. now I know why. Cortisones

basically cripple some of our immune response pieces, which we may NEED to do in

some instances, whereas singulair cripples the attackers. (I know it's not that

simple, but that's the general idea)

BTW, before the lung flute it used to take me at least half an hour after waking

to clear out the gunk..... and that's after taking elixophyllin, (my draino)

allegra, mucinex and at least two cups of hot coffee.... then a hot shower...

now, it's been reduced to about ten minutes of clear gunk.

One thing for sure is we need to take that annoying nasal drip, cough etc up to

the next level.... serious.

wishing you the best, beth fillman

[Guest guest]

Just posting my interesting experience with allergy skin testing. Several years

before my CLL diagnosis, I had two food allergy responses. So went to the

highly recommended allergist who then performed various skin tests. He seemed

quite surprised that I had a negative response to ALL of the tests, including

the positive control (histamine) to which everyone who is not on anti-histamines

responds.

Looking back, this might have been a clue that something unusual was going on in

my immune system. Wonder how many have had this experience and if allergists

might find this a clue to suggest their patient go have a cbc.

Lynn

[Guest guest]

I had a blood test for allergies during the 5 years that I was trying

to find out what was wrong with me. I came back at the top of the

scale for everything except milk and dogs and cats. Since I'm lactose

intolerant my doctor found it funny to suggest that he guessed that I

could just live on water. Ha, HA! I didn't go on to an allergist, but

reading your experience made me think back on mine.

Pat

On 10/5/10, lynnb65 <pualynn@...> wrote:

> Just posting my interesting experience with allergy skin testing. Several

> years before my CLL diagnosis, I had two food allergy responses. So went to

> the highly recommended allergist who then performed various skin tests. He

> seemed quite surprised that I had a negative response to ALL of the tests,

> including the positive control (histamine) to which everyone who is not on

> anti-histamines responds.

>

> Looking back, this might have been a clue that something unusual was going

> on in my immune system. Wonder how many have had this experience and if

> allergists might find this a clue to suggest their patient go have a cbc.

>

> Lynn

>

>

>

[Guest guest]

Lynn,

this is very interesting.... similar here.... after three years of testing and

shots for what irked me, I took less and less of the shot material, BUT had more

severe reactions to the shots.... so bad that we had to stop them. I sat down

with the allergist who admitted that he didn't think the sensitization shots

were 'working' according to plan since there was no real/accurate/precise way to

measure 'immune response' in general let alone specifically, no practical way,

and in the area of CLL he wouldn't even venture a guess.

we stopped the shots and I now rely on various medications - two of which have

been looked at with an eye to cll effect, singulair and

theophyllin..(elixophyllin) but not necessarily for that reason.

be well, and thanks for that observation ! beth