CLL Support Association
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Watch and wait with CLL

Hi

I was told last august that I had Cll and that I was a watch and wait patient. Since then I have chronic tiredness, pains in my joints and muscles. I get every cold that's going. I have just one year left until I retire and its like running in a marathon I am struggling badly. My concentration is not good.

What annoys me most is that my local GP has so little knowledge about this illness and keeps referring to my consultant, who will explain all next time I visit him.

I find it hard to have to keep explaining to my family about my lack of energy, they feel when you look all right you have to be all right.

I was at a seminar about Cll in Dublin. I found it very helpful.

Thanks to all of you for your positive posts and to this forum. It is a great help.

Edward.

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Hi Edward and a warm welcome for your first post on the site.

CLL isn’t created equal and each person experiences it differently. When we are diagnosed, we don’t really know what to expect in terms of time to treatment or possible symptoms.

I’m sorry you’re experiencing bad fatigue and it is indeed badly misunderstood though increasingly accepted as a CLL symptom by medics who know their stuff. Errant cytokine activity is often cited as the cause and your family need to appreciate that your body is constantly fighting an internal battle to keep infection at bay. It may not be seen but it certainly can be felt and some days must feel like wading through treacle!

GP’s are generalists and not always well briefed on CLL which is why yours is referring you to your Consultant.

Age and other conditions play their part of course but try to pace yourself. Don’t feel ashamed to say you need a rest. Your employers are required to make ‘reasonable adjustments’ to allow for the additional pressures of having a cancer.

CLL is hard for people to understand because the visible signs are not usually there. Funnily enough, people are more alarmed since I’ve develped large swollen lymph nodes under my chin and neck area. That’s what they expect of cancer but the ‘constitutional symptoms’ as they are known of fatigue, night sweats etc. can be the real bug-bear for us.

Discuss these issues with your Consultant particularly your inability to dodge and shake off infections. Your immunoglobulins (antibodies) could be depleted and this can make infection more of a problem.

Best wishes and glad you’re finding the forum helpful to you.

Newdawn

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Newdawn thanks for your nice reply to Edward. I joined yesterday and made my first post as a reply to someone in my same situation and woke up this morning to a berating response from one of your administrators regarding my username. No “welcome to the site” no “we are glad you’re here.” Just that I need to change my username and here is a link to how to change it. I was excited to find this site and hoping to get some support for my fears and concerns. I didn’t expect my first interaction to be a lecture. Thank you for being nice to first time posters.

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Funnily enough Tabitha, I was just replying to that as this post came in.

Let me explain. AussieNeil pointed out that using your possible real name isn’t a good idea because many people join us and don’t realise that unlocked posts (meaning posts not restricted to this community), can then appear on the internet. As you’ll appreciate, not everyone wants the cyber world to know their health business and it’s made worse if people use their actual name.

We now know it’s not your real name so that’s fine but Neil certainly didn’t mean to berate you over this. In fact, a volunteer alerted us to this in an attempt to protect your privacy.

It’s always a problem for us Administrators to have to make the first welcome details about site features because it sounds unwelcoming and that’s the last thing we want. However, we value our member’s privacy enough to continue giving the warning.

The important thing is you are welcome, your fears are fully understood and you’ll find a very friendly and supportive group here.

Best wishes,

Newdawn

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Thanks for the explanation and I appreciate the concern for health information privacy. I’m trying to find a search feature because I’m looking for information about what to expect from a bone marrow biopsy. I’m scheduled for one on Tuesday (next week yikes!) and I’m scared to pieces over it. I hate needles SO bad... I pass out a lot even just during bloodwork. I’m supposed to also have a CT scan with contrast on same day as bone marrow biopsy. I honestly don’t think I can do it. I hyperventilate and nurses get frustrated with me and send me away saying I’m uncooperative, but I can’t help it. Is there somewhere I can search for what to expect in bone marrow biopsy?? Thanks for your welcome message. I really appreciate it!!

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Welcome!

You'll find the site search at the top right of the page on a computer and under the 'More' menu on a mobile device.

With regard to your question about your bone marrow biopsy, many of us have had them. They are best experienced by someone who does them all the time. I would recommend that you ask to be lightly sedated (as I was - it's standard practice in Australia) so you won't be aware of it.

Here's a list of posts where we've shared our experiences:

healthunlocked.com/search/b...

Incidentally, we have upwards of 400 new members join each month. Much as we'd like to check how long everyone has been a member before we reply , we just don't have the time...

Neil

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Hi Tabitha,

CT scan a doddle and nothing to worry about. Being honest a marrow biopsy is uncomfortable. If you can bring someone with you it may keep you calm talking. I found swearing loudly helped, but sadly did nothing for the boy, I didn’t see, in the next bed. You will be fine and just don’t look is the best policy, and singing to calm yourself.

Regards

Colette x

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Hi - I had a bone marrow biopsy about a month ago - and I was really scared before the event. What happened is that I was offered sedation but decided to go for it without because I wanted to leave as soon as possible afterwards. You lay down on a couch on your side facing away from the medical person who is doing the procedure. A tiny bit of local anaesthetic is injected into the area at the back of the pelvis near the hip. You will not see any of the needles because it is all done from behind you. When the local has had a chance to work - minutes - you will feel a bit of pushing as the medic accesses the bone marrow. I would say it's uncomfortable rather than painful. The medic and nurse were really reassuring and that makes such a difference. Afterwards a dressing is put on the site - you can't have a shower for three days afterwards or a bath for a week. It was a little sore for about a week but no other problems.

Had CT scan as well - just tell the nurse who inserts the cannula about your needle phobia beforehand - they will be well used to this and should be able to help you cope. What happens is that you have the cannula inserted- lay down in the CT scanner with your arms above your head and contrast is injected remotely by the operator. There won't be any other needles involved. No problems with this and it is over very quickly.

I hope this helps.

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You could ask for Emla cream before the procedure ( a local anestectic cream used for children when they are having needles inserted or bloods drawn - used for adults as well where I work).

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That was a much better and lucid reply than mine.

The other thing I do is count ! This might sound mad ? ? But I count seconds between movements, and then start again. I suppose it’s like counting sheep, except when I did that I would be awake changing faces and the way they jumped!

C x

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Needles don't bother me, but biopsies totally freak me out. My first two were done by very good people, and I honestly don't remember pain, just going in totally panicked. If you ask about them everyone will report different experiences.

The one thing everyone agrees on is that you want someone who does a lot of them. You can ask about being given something to relax you going in - Valium or Ativan are often prescribed - or for mild sedation. I didn't have either, because I needed to be able to drive myself home (two hour drive). No pain afterwards and no problem.

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Welcome tabitha, feel free to contact the group whenever u want. This community is always here for you x

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Thank you lucyjack :)

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Hi,

Thank you for your reply and kind words and indeed to all who replied. I know that there is lot of people a lot worse than me. I will endeavour to live with this and not die with it.

Your forum is very helpful and gives me the strength to cope.

It is early days for me and I will be going back to my consultant in August for further test, then I will know where I stand as regard what comes next. Thanks again to all of you and may God bless you all.

EPPL

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Hi Edward - Newdawn have you the best advice. This site will help with knowledge and support.

Pam

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EPPL

Hi and welcome. Don't be upset with your GP for not knowing that much....it is his job only to know you need to see a Hematologist. My primary doc is great...but he certainly does not know as much about loookemia as my Hematologist.

As for the fatigue...oh yea, that sucks so totally and I can relate. I was Dx about 16 months ago early stage but suffer extreme fatigue. I look fine, and except for fatigue feel fine....

Do not let anyone tell you the fatigue is "in your head" it is caused by an over production of Cytokines, same thing your body makes you get the flu or Ebola or something. It effects young women 3x as much as men, but effects all ages and both genders...it can happen early, late or not at all. It makes no difference what you blood numbers are...and again...it sucks.

My doctor gave me Ritalin which helps some....except for treatment there is no real answer I can find for the fatigue...and even treatment is no guarantee it will go away.

Scott

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Hi Edward,

I of course agree with everything that wise Scott says. When I was first diagnosed my then GP told me to look at the cancer backup website. So obviously had no idea what I had. I am in a big London surgery and the only patient with CLL.

Good luck

Colette

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Wait Colette....you can't be the ONLY patient with CLL...I got it too...and I think one or two other people on this site might have it :)

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Silly boy ! I take back the compliment !! I am the only one in my surgery. That was in response to Edward being surprised by his GP’s lack of knowledge and understanding of CLL.

C x

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Thanks for your reply. I think we are all hurting with cll some way or another. The song 'Everybody Hurts' sung by Fr. Ray Kelly is good. Can be got on YouTube.

EPPL

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Oh Edward. I always liked R.E.M.’s version of this song but I did see Father Ray’s version and it was so moving. Hold On Hold On..... those of us here are in this together...........sharing our hurts and worries and supportive words....... Pat

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Happy July ,

If you have not had your Vit D , B12 , and thyroid checked lately you might want to ask your GP to do a blood study.

I am retired and only work around our place plus a small part time job. I was running out of steam every afternoon around 3:00. Found out I had problems with all three and once being treated have regained a lot of energy.

james

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I can appreciate your situation. I have been on watch and wait for more than eight years now,

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Hey whats your username mean? I like it

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As you can see, Edward (and Tabatha) there is a lot of support here - sometimes about how to get around the site, sometimes about dealing with different aspects of CLL, and sometimes a little humor to keep our spirits up.

A good resource is cllsociety.org where you will find everything from the basics to reports about the latest research, as well as a list of links to reliable CLL specific groups.

The videos by Dr. Susan LeClair about understanding your labs on patientpower.info are great. Dr. LeClair has a gift for making the complicated understandable.

Another favorite resource is the article Three Important Blood Tests on clltopics.org/ The site is no longer active, but this article is one I still refer back to. Some doctors do all three tests at diagnosis to get baseline numbers. Others (it can vary by both doctor and where you are in the world) will confirm the diagnosis using a Flow Cytometry test, but not do the others unless / until treatment is needed. Whether your doctor does one or all three, it helps to know a little about all three, as you will see them referred to often.

Edward, I agree about asking to have your Vitamin D, Vitamin B12, and thyroid checked. My vitamin levels were very low and getting them into a better range was helpful. In my case my bone and joint pain improved when my D level went up. No scientific proof that the vitamins were the reason, but I'm happy with the improvement. Work with your doctor to find the best dose for you.

You might want to ask the hematologist about having your IgG level checked, also. If it is very low and you are sick all of the time IVIG (gamma globulin) infusions can make a big difference.

Don't try to understand everything at once, and avoid Dr. Google while learning the basics. When I was diagnosed I would download every scientific article posted on the various CLL sites and read them over and over, sure that if I didn't understand everything I would die. I don't have a scientifically oriented brain. I finally realized that I didn't have to understand it all. I had / have a great hematologist who did, and who can sort out which information applies to my case.

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