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CLL Support Association
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Gastrointestinal bleeding investigation for anaemia?

Hi was diagnosed with cll 4yrs, bloods going up wbc90 lymphocytes 95 all other bloods fine until now my platelets are dropping and he says Iam anaemic,the doctor want me to go for a camera down throat and up the other way as well ,just wondering what he's looking for as he says I shouldn't be loosing blood etc anemia..thanks

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Hi Jimi. Welcome!

Anemia is a common side effect of CLL once the CLL has advanced to a certain degree of bone marrow infiltration. I am not sure how advanced your CLL is. I was extremely anemic and transfusion-dependent by the time I started CLL treatment (which corrected the anemia very quickly). But there can be many causes of anemia. Apparently your doctor, who wants to put a camera in from both ends, wants to look for some source of bleeding somewhere in your GI tract, as the possible cause of your anemia. I don't know if he has reason to believe you have a GI bleed. If it were me, I would insist on seeing a CLL specialist before I did the camera thing. Because a CLL specialist (someone who treats CLL patients exclusively) will be a better able to assess whether your CLL is at a stage that could cause anemia. No need to stick camera down body if explanation lies in your bone marrow. CLL doctor is best quipped to answer that question.

good luck and keep us posted!

kim

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Hi Kim thanks for getting back to me ,I don't get it my heamotoligist aren't really cll specialist but he says Iam near treatment and 3months ago my bloods platelets iron were normal and now there dropping,I haven't told him I was trying cannibis oil thc and CBD the thc oil was home made of someone but the CBD oil was of a web just wondering now if that has caused it ..thanks kim

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I've done a fair bit of research on medicinal cannabis oil (THC and CBD) and have used it myself intermittently. I don't believe that would have anything to do with anemia. I think you should push to locate and see a CLL specialist. Most of us need to travel out of town to do this. Usually only big centres have CLL specialists. Nobody other than a CLL specialist really knows when you need to start treatment. A general hematologist is not enough. But anemia can be a typical symptom of CLL as you reach the point of needing treatment, in which case inserting a camera into your body would not be helpful or necessary. Only a CLL specialist will know for sure.

kim

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Thanks Kim..

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Good Morning Kim

I am not going to comment on gastrointestinal bleeding as I know nothing about it. I have however used cannabis oil. Like most people when you first are told you have CLL, I said "why me" and started looking for some magic bullet that would cure my CLL. I was diagnosed after going to doctor for drenching night sweats and rapid weight loss, which I thought might be hormonal in nature. I started using CBD oil twice daily for about a month or so. The only benefit I could see after several more blood tests with CLL indicators going south, was relief from drenching night sweats and increase in appetite. I discontinued the CBD oil and still feel fine. I believe in not taking any "pills" doctor has not prescribed rather than search for "cure-all pill", because you never know how different meds react with each other. The fish oil is classic case. This does not mean you need to give up hope. May God bless.

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Thanks big d ..

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Hi Big_Dee. I am not advocating medicinal cannabis oil. I have not personally found it useful for this or anything else. I was just replying to Jimi's question about whether cannabis oil could have caused his anemia. I don't believe it could.

kim

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Hello Kim

Yes, I understood that was what you were talking about. I just wanted to add my experience. God Bless

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Hi and welcome to our community Jimi,

I second Kim's recommendation that you make the effort to find a CLL specialist for a second opinion. While gastrointestinal bleeding can be a cause for falling haemoglobin, with CLL patients, the usual cause is increasing bone marrow infiltration, possibly worsened by increased red blood cell filtering by an enlarged spleen and less often an auto-immune complication known as Auto-Immune Haemolytic Anemia (AIHA). That doesn't rule out other causes since we are all still susceptible to other health conditions. However, given your concern, along with the fact that your haematologist is not a specialist in blood cancers let alone CLL, you would be wise to find that specialist now. However, if you have had a fecal blood test, a positive result there would definitely require the camera inspection and perhaps other symptoms have led your doctor to recommend this.

There are a few lists of CLL specialists available:

cllsociety.org/toolbox/cll-...

cll-nhl.com/p/cllnhl-doctor...

You may not require treatment for your CLL for some time if your platelets stay above 100 and your haemoglobin stays above 10. These and other triggers for starting treatment are shared in this post: healthunlocked.com/cllsuppo...

There doesn't appear to be any good evidence for cannabis slowing the progression of CLL, though it does have a role to play in pain relief and in managing nausea during treatment when other options fail. I hope you aren't ever in those situations. But if you want the most accurate diagnosis from your doctor and specialist, you really do need to fully disclose anything you are taking/doing that could be the cause of your symptoms. I'm sure they've all heard other patients admit experimenting as you have.

I've taken the liberty of renaming your post title, so that others faced with your quandary can benefit from reading the resulting discussion.

Neil

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Thanks Neil I will take your advice thank you..

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Hi Neil just a question ,can you get sweet syndrome with cll I've started to get red lesions on me and that are raised and clusters .I googled this and it looks like sweet syndrome ,many thanks jimi

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Having CLL doesn't prevent us from developing other medical conditions. It is also possible to have a rare skin infiltration with CLL. See your doctor about this; I'm not medically trained.

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Will do thanks neil

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Hi Neil just a quick question.went for a ultra sound on abdomen, showing large spleen 20cm.does this mean time to treat,all bloods in the normal range WBC 99, hope to here from you ..jimi12345

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Hi Jimi,

My spleen was showing as 20cm on an ultrasound (normal is approx 11cm).

Much depends on other factors as to whether this will stimulate the need for treatment. If the spleen enlargement is implicated in impacting on dropping haemoglobin (RBC) and platelet levels, then there’s a good chance treatment is indicated. Mine were holding steady like yours.

A spleen enlargement does represent some risks and you’ll need to protect it from injury so heavy contact sports for example are hazardous. It can shrink back some and mine went back to 17cm within the following months. It needs regular monitoring and any pain to be reported to your specialist.

Best wishes,

Newdawn

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Thanks newdawn.

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Hi Jimi,

With regard to your spleen size, I agree with Newdawn. An enlarged spleen isn't a trigger for starting treatment, though I expect if that was the only symptom causing problems, your specialist might do so.

Neil

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Hi Jim

I had the same scenario in November. Had the cameras to see if the anaemia was being caused by internal bleeding. It wasn't so I had a bone marrow biopsy and CT scan which showed bone marrow was infiltrated with CLL cells. I started on the Flair Trial (lone Ibrutinib) 3 weeks ago.

Best wishes

Netty

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Hope all is going well Netty.

Sue

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It has been a little rocky because I have a history of Atrial Fibrillation and since starting, have had 3 episodes. The hardest part has been having to go to hospital every time I have one and then spending hours there while they monitor me. I would normally just take my meds, rest and replace the fluid loss. Otherwise am ok at the moment apart from a little nausea in the mornings.

Netty

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Nothing is easy is it.

I hope things soon improve for you. I agree A@E nor afib is nice on a nice sunny day.

Sue

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No but they have adjusted my heart meds so I am hoping it will settle down after my body gets used to the Ubrutinib. My AF seem to be affected by disturbance to the vagus nerve so fingers crossed.

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That's good to hear Netty. Fingers crossed. Sue

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Hi netty is the meds working for you etc bloods going to normal ?

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Thanks netty hope it goes well for you..j

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Thanks Jim. I think it's too early to tell. I have my 4 week check next week so will see.

Netty

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As Neil says, anaemia is a common side-effect of CLL. Looking for internal bleeding seems an odd way to start. Possible is that CLL has triggered your body into destroying your red blood cells (though I am not sure this explains lowering platelets). Are you with a good CLL specialist?

If you are destroying your reds (AIHA), you will have yellow whites to your eyes, more yellow urine and look pale/grey in the face. Then in your bloods, your LDH and Billi will be higher than normal (signs of destruction) and your reticulocytes will be higher (signs you are making more reds to compensate for the destruction). The destruction happens in the spleen, so that will be swollen (though this can be hard to detect without a scan - depends on how good your doc is in feeling spleens). If you have these symptoms, it is not bleeding, but AIHA caused by the CLL

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Hi quarry thank you I have had a CT scan about a month ago it showed a slightly enlarge spleen and a lymph node up a bit in my collar bone area near my neck ,so went back 3 months later and now my bloods are not the same , anemia and lower platelets he say treatment soon and wants me to start FCR so he has sent me for camera and bloods and fish,I don't want to take FCR so what do you think ,, thanks jimi

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Things can change quickly if you have AIHA. Do you have any of the symptoms I mentioned above (yellow eye whites, dark yellow urine, grey face?) Any of the blood number movements?

And do you have a CLL specialist looking after you?

I can't advise unless you give this information!

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Hi quarry. How yellow does my eyes have to be do you mean jundice type or just a little yellow plus I've always been a bit pale not sure about urine up and down and heamotoligist not a cll expert all my bloods have always been ok until now ,Iam I entitled to see a cll specialist I have heard there's one in Leeds called doctor Hillman any support would be good plus Iam not handling this very well .thanks quarry...j

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On eyes, yes it is jaundice type look. Really anything more yellow than your standard healthy look.

I think it is now very important you get a CLL specialist and you are totally in your rights to ask for one. You are a relatively rare case (a GP will only see 2 or 3 in their career, even a general haematologist is not specialist enough). IF YOU DO HAVE AIHA, even that is rare within CLL people (10%). I am very lucky, as I have luckily a top CLL specialist and she know what to do with my AIHA. once you are this rare, it is more experience, not science/rules. Do ask for a specialist and I am sure there is a good one in Leeds

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Thanks quarry

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The couple of times my hemoglobin was falling for no apparent reason my hematologists (first one moved so there were two involved on different occasions) ordered a full anemia panel, including a fecal blood test. It is important to rule out polyps, colon cancer, ulcers, diverticulitis, etc. but I would start with a CLL specialist, ask about the full anemia panel, including a fecal blood test, and then go with his/her advice, perhaps in consultation with a gastroenterologist. Past a certain age colonoscopies are addd to important tests, and you might as well have an endoscopy at the same time if there is any indication that the lowering hemoglobin is due to gastrointestinal issues.

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Thank you

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Hi Jimi,

Although anaemia is a common problem with CLL patients (usually due to infiltration of the bone marrow where the red cells are made), I can understand why your doctor would want to rule out any other causes for it.

It would be a shame if some other serious problem was missed, because the anaemia was assumed to be solely due to CLL. I've had cameras down my throat and up the other way and although not pleasant, it was reassuring to know that those areas had been checked out.

However, as your doctor is now talking about treatment being imminent, it would be good to be referred to a CLL specialist, at least for a second opinion.

I don't know where you live but you mention Dr Hillmen in Leeds so i assume you're in the Yorkshire area? Anyway, if you can get seen by Dr Hillmen, you'll get the opinion of one of the most experienced CLL doctors around! There are many clinical trials going on in Leeds too, that might give you more options than FCR.

Hoping things work out well for you,

Paula

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Thank you very much paula

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Hi Paula Iam from the Blackburn area so I haven't got a clue were else to go to see a specialist of cll but I heard someone mention Dr hillmen name ,so any more Dr local would be great..

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Maybe Manchester is nearer you, Jimi?

The Christies hospital in Manchester is another great centre for CLL.

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Dr Adrian Bloor is the CLL guy at Christie's. Ive heard very good reports about him.

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Hi Jimi,

I'm still trying to think of CLL specialists in your area. And I've just remembered there is Prof Andrew Pettitt, at Liverpool University Hospital. Also highly recommended by some folk on this site. l

I got a feeling that all my suggestions (Leeds, Manchester and Liverpool) will be about an hours drive from you though in different directions!

cllsupport.org.uk/making-se...

Best wishes,

Paula (in Sheffield)

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Thanks very much paula I will have a try ...take care ..jimi

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