I didn't get it because it is so new and not much known about it yet but my family members are getting it to help protect me from coming in contact with it through them.
If I go out I put vaseline up my nose and use antiseptic hand gel,wipes and wash hands often for two minutes in hot(Or very warm) water.Keep hands away from face unless just washed.No touching nose,eyes or mouth unless hands are scrubbed!
Hope this helps some!
God Bless,
Deb
www.cllcfriends.com

I called my oncologist's office today in hopes of getting a response. Unfortunately he is on vacation this week but his nurse said they are advising pts to get the vaccination but I was more than welcome to wait until he returned next week to get confirmation. I had read on another CLL website that there was a component of the vaccine that perhaps was not good for us CLL patients.
In the meantime, I like your suggestions DebLight!

Thanks! Dr. Keating says if you are a CLL patient who has had treatment these vaccines only have a 10% chance of helping us anyway so the choice was up to me!If I hadn't had treatment I might consider it.I did get the regular flu shot though.
Let us know what your oncologist says when he returns!
Warm Regards,
Deb

My specialist recommended the shot so I got it yesterday.

Kinda wish I had gotten it too since I have had the flu all week and it was most likely H1N1 since I had the other shot.It is a tough flu and I'm hearing that the vaccine is as safe as the Type A Flu.But it may not have helped as Keating said.If you haven't had treatment,I would say go for the shot,otherwise tough call!

God Bless,
Deb
www.cllcfriends.com

Hi Deb,
Sorry to hear you've got the flu. Take care of yourself and I hope you feel better soon.

Thank you cottagelvr,

It is a very bear of a flu.I had deep coughing,sore throat,runny nose,ear ache,chills,diarhea,vomiting,slight fever.I still have some coughing and runny nose but not as bad as before.It hit me like a ton of bricks the day after Halloween.On Monday I called my oncologist and he started me on Avelox,Tamiflu and Benzonatate for the cough.I had to cancel my Dr. visit,CBC and IVIG last week.So I go tomorrow.Yesterday was the first time I've been out of the house in 13 days!
Hope you guys stay well and don't get the H1N1!!
Love Ya,
Deb
www.cllcfriends.com

Hi Deb,
Yikes, that sounds awful. Glad to hear your on the mend.
Good luck tomorrow with your appts.
Linda

Thanks Linda!My appointments went well.They say I should be immune to the swine flu now since I got it behind me for awhile.I forgot to mention the bad muscle aches.I ache with my fibro all the time anyway but this was much deeper esp. in my legs.Had to sit in a hot tub everyday with some bath salts.Hope you guys don't get this stuff.The only good thing my platelets jumped to over 300 for the first time in years so H1N1 must be good for platelets!Who knew??

God Bless,
Deb

I get my flu shot every year...my doctor remommends it.

i got both the H1N1 and the regular flu shot...

Hi,
I'm new to this group. My doctor gave me the flu shot and it seems to be ok. I was diagnosed in November 2009. I am going for blood tests every 3 months at this point. I am sure this will be a good place to talk to people that have CLL. Do you know anyone that also has Fibromyalgia with CLL? It seems I have had so many things bother me that I wondered if there was any connection with this new problem.
God bless,
Renee'

Hi Renee,
I know exactly how you must be feeling. I was diagnosed with CLL in Sept 09 and have felt like I have been on an emotional and physical roller coaster ever since. It certainly is a lot to take in and adjust to. I had actually went to my family dr. in December thinking that I must also be suffering from fibromyalgia because I felt that my entire muscular system was aching all the time. I have felt muscular pain on and off over the past few years and thought this must just come with age (all my friends complained of the same) and my admitted sedentary lifestyle. Anyhow, for me it has been pretty much ruled out. I think for me my body was reacting to the sudden shock and stress it was put under with my diagnosis. It's been a LONG four months for me. I had my follow up appointment this past Monday with my oncologist and the blood tests and the fact that I remain asymptomatic still classify me as a level 0. I cannot tell you how much better I have been feeling since that appointment. You see within 48 hours of first receiving my diagnosis back in September I have been experiencing any kind and every kind of 'symptom' related (and some not related to) to CLL. Anxiety and stress can do awful things to your body and mind.
As for the fibromyalgia, I think there is someone here in this group who has the same and I am sure they will be in touch with you. In the meantime, perhaps you are just going through what I have been. You have to try to stay positive and think of only what you 'know' to be true about you and your CLL and not manufacture what you think 'could be'. You'll drive yourself crazy. With help from each other (and sometimes a good therapist!) we can face this disease together.
I'll be thinking of you...
Linda

Renee and Linda,

I have fibro and had it several years before my DX of CLL/SLL.I really think the fibro is worse to me then my CLL and I have been through many treatments.

When I went to see Dr. Keating at MD Anderson he said that fibro and CLL go hand and hand.He said as a matter of fact Debbie,the guy in the room beside you right now has CLL and fibro.He said he had seen it time after time.So yes I do think the two are related but not of course in everyone with CLL.

Stay in touch.I understand and I care,
Love Ya,
God Bless,
Deb
www.cllcfriends.com

Thanks Deb,
That was quite enlightening about the Fibro. I was diagnosed about 15 years ago. I just wonder if my white cells were high at that time. One of my worse parts of Fibro is the fog. It is almost like I am half drunk, but not feeling good a lot of the time. Sometimes I don't want to drive. The pain is bad, but worse in my neck and head. I am somewhat of a fighter, raised with 5 brothers. I don't want to let it get me down. I am older than a lot of you in this group. I am 66 and love my flowers and vegetable garden. My husband and I are fishing again since he has retired. We are both older and have aches and pains. He is very supportive and I think somewhat worried about my CLL,
God bless,
Renee'