Re: Its the Cll/Sll Re: itching question

[Guest guest]

Marilyn:

Thank you so much and warmest greetings to you too.

Its the Cll/Sll Re: "itching" question

:

Apparently most patients with CLL/SLL and many doctors dont know about the itching. I had it very badly, it worsened and drove me crazy, and it had to be controlled with Zyrtec, 10mg once a day. I cut them in half and took only 5 mg and it worked just as well as 10mg. I was diagnosed with CLL/SLL in early 2003, but actually found a tiny lymph node in my neck in 2002, a year and a half before the lymph node biopsy was performed, WBC's were normal at the time of the biopsy. The itching began before there was any sign of CLL in 2000 It occurred veryevening on the side of my face, then alternated to my neck, (it was a red area without a rash) after a couple of years, it worsened and went to my feet every night when I went to bed. I went to a dermatologist who could not figure it out. My oncologist said it was not due to CLL. I googled a Lymphoma web site and read that itching was one of the symptoms. I mentioned it to my Primary Care, who said he had a patient with itching and went to every dermatologist in town without an answer, then she found a lump behind her ear, and it was Lymphoma. He is the one who gave me the Zyrtec. As my disease progressed I went into the CLL MyVax (Genitope)clinical trial 2007 and mentioned the itching to the M.D. trial director who also did not associate the itching with my CLL . So perhaps you and I have a rare form of CLL/SLL. After a few months of the Cl. trial, the itching began to subside, the WBC's went down, the spleen was no longer enlarged, it looked like the beginning of a remission. However, that was short lived. After about 6 months of the trial my WBC's and ALC went up rapidly, the Hemoglobin was teetering just below 11 off an on, spleen began to enlarge slightly, and so did the many lymph nodes that I had when I went into the trial, platelets remained OK. I shall digres

s here: I went into the trial with a WBC of 140,000, after the first few months went down as I said above to about 118,000, It was when the count quickly jumped up each month thereafter until they reached 182,000 that the clin.trial director recommended I drop out of the My Vax trial and begin treatment with RF. During the trial, I went from a partial remission to an explosion in only 3-5 months, dont know if it was the Cl Trial or if that would have happened anyway. I was given Prednisone a couple of times during the trial to prepare me for a CT scan to prevent hives from my allergy to iodine. Of course prednisone would keep away the itching but it wasnt often enough to account for "no itching" during the cl.trial months that extended from April 07 to Dec 07. The 6 months of RF that I recently completed was successful. I had never been treated before with Chemo, only the My Vax. Did not have any itching whatsoever during the 6 months of RF but here again there was steroids in some of the anti nausea meds given with the RF. We'll see if the itching returns. If it does, it may be a gauge of the disease starting up again. I did receive a side effect, not from R.F, but from the steroids I'm told are contained in the anti nausea meds given with R.F. I have joint pain and muscle weakness of lower extremities, from low back and hips down.. I noticed it after the 4th month of RF. My onc. said the complication is called Steroid Myopathy. Not nice! After I sit for awhile, I can hardly get out of the chair. He wants me to go into Rehab, and am looking for a place with Aquatic exercises.

I believe you have the itching from CLL/SLL. From what I've read, there are many sub types and some day the researchers will be able to identify and treat each type sucessfully.. .Hope and pray for this to happen soon.

Best to you and all who keep this group moving along,

Marilyn Barbera.

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> Dear and fellow friends:

>

> I read yesterday that "itching" can be one of the symptoms for CLL/SLL.

>

> Have you seen this and should one be alarmed or just watch it for a

> while? In the last few days I've noticed "itching" sensations near my ankles and

> then also on my face. I'm not near mosquitos so it's not bites.

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