Angie4now

[Angie4now]

Hi my name is Angie, and I was recently diagnosed with CLL stage 0. I have never been a medicine type of person and try to eat healthy and live a healthy life style. My onglogist recommended that I get the flu shot and two pneumonia shots every five years. Has anyone taken these shots and is there any side effects to the pneumonia shots? I am constantly tired that's the reason I went to the doctor in the first place b4 my diagnosis. I was told my tiredness is not related to my CLL.

[AdrianUK]

Hi Angie. First up welcome to the family you never wanted to join. I'm also a relatively new member being diagnosed in May. First up, as someone who had a rather nasty pneumonia involving weeks of hospitalization (though nothing like as bad as some people) that lead to my CLL diagnosis (and was almost certainly caused by the CLL) I would do almost anything to avoid experiencing that. People with CLL all have reduced immune systems and so in the future you could get pneumonia. The shots will help your body learn now how to fight it, so that if you get pneumonia later on when maybe your immunity is not as good as it is now it has a better chance of fighting it off. So yes you can get a bit of soreness around an injection site but take the shots! I've had mine even tho I already had the pneumonia. Now as far as tiredness goes that's a very real issue for me at the moment too. I've been told my tiredness is probably due recovery from the pneumonia. Others tho have admitted that they just don't know. And many people on here report horrible tiredness as a symptom of relatively early CLL. So do get yourself checked out for other causes (e.g. Blood vitamin D , b12 and folate levels, maybe even a thyroid function test, etc. Just coz you have CLL doesn't mean you don't have other conditions too! Also work on your sleep hygiene (bed time routine) and try to increase your sleep. If you are able to get a rest during the day as well and pace yourself. You might find there are triggers of the tiredness you can avoid. Good Luck. I hope you find a way to either cope with or better yet improve your tiredness. Many people will tell you that early CLL is not that serious and not to worry about it and this or that symptom couldn't possibly be related to it. But your immune system already isn't working properly. And so you are at risk and as we said if they don't think that they wouldn't be telling you to get vaccination! So realize it's early days for you. And like I say good luck! Have you had your mutation status checked yet?

[Angie4now in reply to AdrianUK]

Hi Adrian, I appreciate the reply. You make some good points. I will get my shots. I had blood works on September 8, they took 15 tubes of blood, my arm was beginning to feel cold. I will get my results for the mutation on October 13. Good luck.

Best regards,

Angie

[shoshanaz in reply to Angie4now]

Angie, just a heads-up, the pneumonia shots, especially, can leave you with a painful injection site for a few days. Still well worth getting both -- spaced out by at least 8 weeks or more. Your doctor should know to follow the guidelines.

Sometimes we do feel like we are feeding vampires with the blood draws. My personal record was 28 vials in one sitting (a number of them were for banking for research) and they kept asking if I was "OK". (I was) More recent draws were fewer, maybe 6-8 on a visit. Depends on what they are looking at, I guess.

[Angie4now in reply to shoshanaz]

Hi Shoshanaz,

Thank you for the feedback. I scheduled my appointment for my shots.

Best regards,

Angie

[Cll4me2]

Hi Angie4now,

Welcome! I've found this site to be a great resource.

I've had both pneumonia shots in recent years with no adverse effects.

I don't know much, but I might be suspect of that statement "tiredness is not related to your CLL".

For me, the most significant step I've made regarding my CLL was finding a specialist at a research center. He only sees CLL patients and is on the leading edge of treatment options. Just something to consider.

Jim

[Angie4now in reply to Cll4me2]

Hi Jim,

Thank for the reply. My Dr said the same thing my tiredness is not related to my CLL. Where does your doctor practice?

[Cll4me2 in reply to Angie4now]

MD Anderson Houston Texas. 8 hour drive one way and worth every minute! I still stay in touch with a local oncologist, but the depth of knowledge and and the feeling of hope at MDA is light years apart! I'm sure other comparable research centers are similar.

[shoshanaz in reply to Angie4now]

At my NIH visit the doctor asked extensively about fatigue. Apparently she does "get it" -- fatigue is very much a part of this disease for many. I'm still trying to figure out what exactly they mean by fatigue. It is unfortunately a very vague term, and the only thing I suspect is that "when you have it you will definitely know it." I second the suggestions that you have a CLL specialist as part of your team.

[Lily_Pad_Master in reply to shoshanaz]

I love my CLL doc. Unfortunately, he kept saying my fatigue probably wasn’t related to my CLL until my numbers doubled and fatigue was used as another indicator of time for treatment. I have another doc who prescribed just enough Adderall to keep me upright and productive. Shortly after treatment started, I no longer needed the Adderrall.

Glenn

[PaulaS Volunteer]

hi Angie,

Welcome to the group, that you never wanted to join but I'm sure you'll be glad you found us.

You ask about pneumonia shots so here's a link to a recent post and discussion about it and other vaccinations. healthunlocked.com/cllsuppo...

I've had flu jabs every year and both the pneumonia vaccs with no problems (just a sore arm and slight aching for a few days, with one of the pneumonia vaccs). But I did get very good antibody responses so it was well worth it.

Sadly tiredness is very common with CLL, even in the early stages. But as AdrianUK has suggested, make sure you're checked for other reasons for the fatigue - it isn't always due to CLL. I had low thyroid function and am now taking medications for that, and it's made a LOT of difference. Others have found they were low in Vitamin B12 or Vitamin D, and supplements helped them a lot.

Wishing you all the best,

Paula (in England)

[Angie4now in reply to PaulaS]

Hi Paula,

This site is definitely helpful I really appreciate all the feedback. I will definitely look into the fatigue.

I wish you luck,

Angie

[Hazel33 in reply to PaulaS]

Paula, my oncologist totally ignores my tiredness (6 years on WW). He says my markers are too low. WBC 50 HBG dropping. Pleased to see from what you say I am not imagining it

[Superdad3]

Hi Angie

Just had my first of two pneumonia shots today, no issues at all. I am also going for the flu shot in a few days. Staying strong and trying to avoid the flu and other bad infections seems more important now than before. I am paying attention more to avoiding being around anyone with a cold

[ap64]

Hi and welcome. lots to learn here and lots of support. hope you find it as comforting as I have.

[Bubnojay]

Hello Angie

Welcome to our community, I almost want to laugh when I see those words that tiredness is nothing to do with our CLL. Of course it is, hundreds here will testify to it. However the best way to deal with it is what you are doing, eat healthily, keep the fat at bay, and exercise if you are able to.

I have had both Pneumonia jabs, and always have the flu jab. Jabs that only irk for a short while are well worth it, as for us, flu and pneumonia are illnesses that our poor immune system struggles with.

You might consider green tea tablets which quite a lot of us take, but take your time and stay away from Dr Google. Feel free to ask any questions that you need help he answer to, but remember we are not medical people, only others who are at different stages on our CLL journey.

Please edit your post and make it available only to our community.

Bubnjay1

[AdrianUK in reply to Bubnojay]

Hi Angie, whereabouts in the U.K. Do you live? It's definitely good to get linked to a specialist service. I've found UCL in Euston, London to be great so far.

[Angie4now in reply to AdrianUK]

Hi Adrian,

I didn't even realize this support group was in the U.K. Until I looked at it again. Actually I live in New York. The doctor I was referred to actually also does lots of research with CLL.

Best regards,

Angie

[AdrianUK in reply to Angie4now]

That's ok, we won't hold being an American against you! Glad to hear you have an expert. A good doctor is both an expert and understanding. My big issue at the moment is not knowing whether my fatigue is just because of the pneumonia recovery or the underlying CLL. I'm obviously hoping the former because then it should get better over the next few months. My life kind of fell apart when I was struck down suddenly with pneumonia. I'm not ready for how I feel now to be the new norm!

[Angie4now in reply to AdrianUK]

It's not easy not knowing. I think my fatigue is due to my CLL. Good luck

[Hazel33 in reply to AdrianUK]

Hi AdrianW, I attend UCL Euston. Is there any particular specialist you see for CLL?

[AdrianUK in reply to Hazel33]

I can't remember the name! I have found the Clinical Nurse Specialist helpline invaluable, and they've even offered me a psychologist which has also been great.

[Angie4now in reply to Bubnojay]

Hi Bubnjay1,

Thanks for the advise. I scheduled my appointment for my jabs. I will try the green tea tablets.

Best regards,

Angie

[Karenlp5 in reply to Bubnojay]

Bubnjay1, I'm also new to the CLL, stage 0, what green tea tablets? I read where green tea extract is good for us, but im unsure what to get exactly.

[marcyh]

Hi Angie,

Welcome to a caring community for CLL. With my first [Pneumovax 23] I had soreness and swelling for a few days. With my second, 5 years later, I ran a fever and spent a day in bed.

All the best,

Marcyh

[Angie4now in reply to marcyh]

Hi Marcyh,

I appreciate the feedback. I wish you luck.

Angie

[MattGGibson]

Have the jabs would be my advice as if you need treatment, you'll have some defences for when the rest of your immune system is shot. In my case no reaction whatsoever to the pneumonia jab.

[Angie4now in reply to MattGGibson]

Hi Matt,

Thank you for the feedback. Actually I scheduled my appointment for prevnar for 9/25 and my flu shot for 9/28. Two months after I will get Pneumonia. Wishing you the best.

Angie

[Angie4now in reply to MattGGibson]

Thanks Matt. Your a trooper.

[Angie4now in reply to MattGGibson]

Hi Matt, I hope you are doing well. I had my flu shot on Friday. I didn't have any side effects. Yesterday I decided to have my first pneumonia shot prevnar 23. My arm is sore with a bump and my body is achy and I feel drained. Having to take a crowded train to work every day. I figured I needed to get it over with.

Best regards,

Angie

[MsLockYourPosts Passed Volunteer]

Angie - There are lots of us from the US (California for me). A couple of the top CLL specialists are in NYC, so you are in a good place to get great care.

[cartwheels]

Hi Angie

And be positive it going to be Angie for ever. Treatment is improving every day and even people like me with 17p now have a good outlook due to new drugs of which we are still learning about. I was dx 2015 and started treatment April 2017 and doing well work and live as before well ok I don't get drunk much anymore but life is still very good with you at stage 0 it will probably be years before you need treatment so keep partying and living life all the best

Jason

[Angie4now in reply to cartwheels]

Thanks Jason- that’s all we can do is live life to the fullest and try to be positive.

Best regards,

Angie

[Gigi246810]

are you the one that was diagnosed with Lymphomatoid Papulosis? I just had a biopsy and they found traces of that in my TCells? Not to sure what that means I’m really scared ?