Re: Shingles: when to stop taking prophylactic medication, after FCR

[Guest guest]

,

I also went through FCR in 2010. Jun-Sept 4 treatments. I

go to Dana Farber in Boston and have a local onco. I've

been on Acyclovir 3X400 mg daily as well as Sulfatrim (M, W,

F). I asked my onco at DFCI how long I would have to be on

these meds and she said, " I don't know " but at least a

year.

She did say after my CD 4 counts improved we could try

getting off of them to see if I had a reaction. I'm not

willing to take the chance of stopping the Acyclovir until I'm

somewhat sure I won't get Shingles. I'm tired on occasion

and tend to have some weakness in my muscles, not much.

Sometimes I feel like shit and don't know why, but I relate

it to the FCR.

Are you seeing a CLL specialist? Hematologist might give

you a better indication as to when you might stop the

Acyclovir.

On Sun, Jun 12, 2011 at 9:15 PM, Y wrote:

/message/15343

[Guest guest]

Wow I have been on Acyclovir now so many years that I don't

think too much about it and the Mepron also!! 9 years

diagnosed with aggressive CLL 11q also. I don't think I

will ever be off of it!

[Guest guest]

I maintain patients on shingles prophylaxis (I use

valacyclovir 500 mg daily) for at least 6 months after the

completion of their upfront therapy. If a patient has

received multiple therapies, or alemtuzumab, I often

continue it indefinitely.

One thing that I do believe is important is that if anyone

has had an episode of shingles, I do continue the

prophylaxis indefinitely, even if they are early in their

disease treatment.

Rick Furman, MD

[Guest guest]

God has had to have set a special place for our Friends Dr.

Furman and Dr. Hamblin. These guys have helped me so much. I

remember once that right after treatment, I had a node

explode on my neck. Dr. Hamblin told me how to handle it.

[Guest guest]

When I was just diagnosed with CLL about 11 years ago, I had

an episode of shingles. I'm on acyclovir as a prophylaxis.

I must admit that I'm not the best at remembering to take

it. Is it that important to take? What could happen if I

just stop it? Does the medication affect blood numbers

(such as neutrophil levels)?

[Guest guest]

Get a pill box for the week it works great believe me

you don't want shingles - take your acyclovir!

On Jun 13, 2011, at 12:11 PM, " S. " wrote:

> I must admit that I'm not the best at remembering to take

> it. Is it that important to take? What could happen if I

> just stop it? Does the medication affect blood numbers

> (such as neutrophil levels)?

[Guest guest]

Have been on prophylactics since finishing 6 cycles of FCR

in Dec 2009. Some salient points:

Response to FCR has continued very positive -- 3 months

after treatment, CLL tumor burden by flow cytometry MRD

analysis of bone marrow aspirate and core was 1 CLL cell per

2500 WBC (0.04% WBC, and at 11 months 1 CLL cell per 1000

WBC (0.1% WBC), thus increasing slowly from a very low

level. Pretreatment level was 700 CLL per 1000 WBC (70%

WBC). Other indicators are normal and stable: B2M 2.29

(normal <251); LDH 148 (normal 120-250), no nodes, no B

symptoms, no organomegaly. Platelets136K (stable) vs 140K

for lower normal limit. Red blood cell counts and measures

all in the mid-to-hi normal range.

Nonetheless, my hematologist was concerned that my labs have

continued to show considerable (expected) immunosuppression:

Currently, almost 2 years after starting FCR, my immune

counts are:

Neuts low normal at 2137 (normal range 1500-7800)

Abs lymphs 357 Low (normal 850-3900)

IgA87(81-463)

IgG710 (694-1618

IgM45 Low(48-271)

CD4+ T cells130 Low (490-1740)

CD8+ T cells 20 Low (180-1170)

It is possible that radiation treatment for prostate cancer

(IMRT) in late 2010 may also have contributed to or extended

my immune suppression. No immune-suppressive chemo for

prostate cancer, only adjuvant androgen deprivation therapy

with Lupron.

As a result, the Dr has prescribed acyclovir anti-viral

400mg 2 per day, fluconazole anti-fungal 100mg per day, and

bactrim DS (800mg-160mg) anti-bacterial M/W/F 2 per day.

Have been taking these since beginning treatment. No

prospect of stopping, since immune counts remain suppressed.

Have not had any infections, colds, or flu. No apparent

adverse effects from medications.

Hematologist also provided Rx that I filled to have tamiflu

on hand in event of emerging flu symptoms.

Still active and in good spirits.

Tim

[Guest guest]

Given this history I suggest that you take acyclovir (or

equivalent) forever.

The other thing to consider is the duration and depth of T

cell dysfunction after taking FCR. The safest course of

action is to continue PCP prophylaxis ( usually tiw Bactrim)

for a minimum of 6 months after completing the FCR or longer

if CD4 cells rain below 200 at that juncture.

Good luck,

Rick