Help me please

[Liverpool2018]

I am 33 year old female had cin 3 4 years now the last 3 years I have had swelling at abdomen ,pain ,weight loss swollen nodes and excessive sweating .for the last 4 months I have had somethink called mild lympcytosis gp said no infection .had scans and went to hematolgist in 2016 they could not find and think only neutophina never had mild lymphcytosis .

[Hidden]

Hi Liverpool2018

Welcome to the group.

Many of the symptoms you describe are usually a sign your nearing treatment however you could possible have an infection causing an increase in your lymphocyte count ie lymphocytosis.

Has your Dr advised you there’s no infection or your haematologist as they may need to do some deeper investigation. Have you got an appointment booked to see your specialist.

Stuart

[Liverpool2018 in reply to Hidden]

Yes I had problems with neutrophils in 2016 but now have had mild lymphcytoisi for over 4 months no infection.and when I get small spots on face and body they bleed under the skin .dr has just put referral in to haematologist but won't be seen till September at least .i don't sleep much because wake up sweating and keep shaking an feeling dizzy .

[Hidden in reply to Liverpool2018]

swollen nodes and night sweats are a common indication your needing treatment, your abdominal pain is most likely due to a swollen spleen which is why you feel bloated especially after eating, the bleeding could be down to your platelet count.

I’m quite surprised your Dr has only just put a referral in for you to see a Haematologist and you definitely shouldn’t wait until September to be seen.

Are you suffering with heart palpitations?

Stuart

[Liverpool2018 in reply to Hidden]

Yes dr said sweaty palpitations and am on 40 mg pronpropnol for these it's because I had test last year and they never found anythink so he said nothing major can be wrong.now he's blaming the deppo contceptive injection now.my lower abdomen is always swollen .had none up for over 2 years but it was not that big then .

[Liverpool2018 in reply to Liverpool2018]

Plus I smoke I cough brown stuff every morning gp just won't listen to me .

[Hidden in reply to Liverpool2018]

The problem is Drs aren’t trained or qualified in Cll as it’s a very complicated blood disorder. I think by the sound of things you need to change GP immediately as on his screen he should see your diagnosis and treat you as a priority which he obviously isn’t.

Another common side effect which it sounds like your suffering with is the onset of anaemia which is why your suffering heart palpitations and possible dizziness.

Smoking isn’t a good idea with Cll as were prone to infections especially chest infections which is why your coughing up Brown phlegm in the morning, were also prone to secondary cancers which you should of been made aware of.

I would advise you to bypass your Dr and go to your local hospital and ask for a blood test and describe all your symptoms as you shouldn’t wait being the way you are.

[Liverpool2018 in reply to Hidden]

I am trying to stop smoking but the stress am not doing very well you can even see lines and bumps in my neck .my lymphocyte count 4.6 ,monocytes 1, eosinophil 0.05 so he keeps saying slightly raised .i feel like a hypocrite some times and all he says I have no infection but a immune problem never get proper answers .

[Hidden in reply to Liverpool2018]

I was diagnosed two years ago aged 38 and had to go straight into treatment. I suffered for about ten years with fatigue swollen lymph nodes all over my body most noticeable at first in the neck and swollen spleen like you and anaemia.

My GP kept telling me I was suffering with stress and just ignored everything I kept telling him until it was nearly to late and I had to force him in the end for a blood test. The problem is being young and keep being dismissed makes you feel like your going mad but you have clear signs and symptoms which need attention so just go to the local hospital tell them you’ve been diagnosed with Cll and explain your symptoms and just ask to be looked at.

Don’t wait around for your GP

Stuart

[Liverpool2018 in reply to Hidden]

Oh that's awful these doctors make you feel like your going mad my nodes been up in neck and groin for a while he hasn't diagnosed me with anythink apart from mild lymphcytosis on my last 6 blood test I wish they would diagnose me with somethink least I would know what is causing feeling like this I have a 4 yr old .

[Liverpool2018 in reply to Liverpool2018]

When I went to heamtoligst in 2016 they said had palpable node in neck but was not that big then because I had problems with neutrophil count I probably had focus infection so got referred to infectious diseases it just never seems to end .

[Hidden in reply to Liverpool2018]

I’m sorry to hear your going thru that, I know exactly how you feel as I suffered at the hands of an ignorant GP as well.

This site is excellent for information and a shoulder if you fancy a moan so don’t be afraid to make new posts.

Your going to be fine but the first thing you need to do is get yourself seen by a Haematologist urgently to check you over, your not going mad so pay no attention to your GP, he shouldn’t be trying to prescribe things for something he knows little about either, that should be down to a specialist to decide. I can imagine your feeling very uncomfortable at the moment with a swollen spleen and nodes and night sweats but they are all common symptoms with this illness, but on the plus side there are some excellent new therapies available now and more in the pipeline.

It might be good if you make a new post introducing yourself such as new to the Cll world and explain underneath about your young child as there are others in a similar position who might be able to give you support, but remember to lock the post to the group.

Stuart

[Hidden in reply to Hidden]

There is a self help checklist which has been posted on this site which will help you with coping strategies and things to look out for.

If you type in the search bar at the top PaulaS and look at her profile one of her posts will be entitled coping strategies if you click on the post and have a read thru.

I’m not sure if you have or not but when you make a post at the bottom of the screen it should state locked or unlocked, if you lock your post more members will reply and offer you advice in the future.

Stuart

[Liverpool2018 in reply to Hidden]

I will have a look you have helped me a lot my gp just not helping me right and I am getting really frustrated thank you.

[Hidden in reply to Liverpool2018]

Your welcome, if you need any help just msg me.

Stuart

[Liverpool2018 in reply to Hidden]

What did you think on the bloods

[Hidden in reply to Liverpool2018]

It’s your haemoglobin level and ALC count which are indications of disease progression you would need an up to date record of these, your lymphocyte count is only just above normal range but this could be down to an infection like a cold or chest infection.

[ladyprescott in reply to Liverpool2018]

I agree 100% with Lewis78. If you can't get in to see a new doctor in the next week, go to the hospital and describe all your symptoms. They will do a battery of tests. You need to be seen ASAP. Wishing you the best. Carole

[MsLockYourPosts Passed Volunteer in reply to Liverpool2018]

A friend had a terrible time with abdominal swelling because of that contraceptive injection. She is still working on getting the abdominal issues under control three years later. It could be a contributing factor in your case. Stress can also trigger some of your symptoms. If you have reached a point of not trusting your doctor, work on finding someone you are more comfortable with.

[Liverpool2018 in reply to MsLockYourPosts]

Thanks I have been on the deppo for 4 years because I had a terrible birth it really scared me .just after having the baby I had leetz to remove my cin .how did your friend find out about the tissues.

[MsLockYourPosts Passed Volunteer in reply to Liverpool2018]

We never discussed that, just that the noticeable abdominal swelling was due to the contraception. She chose to go with the permanent surgery option.

[Liverpool2018 in reply to MsLockYourPosts]

Ok thanks for your help did she end up with a hysterectomy.as soon as I go to sleep the sweating wakes me did your friend have any other symptoms.

[MsLockYourPosts Passed Volunteer in reply to Liverpool2018]

SA this is not a locked post I'm not comfortable discussing my friends case beyond what I've said.

[Jm954 Administrator]

My first concern would be about the follow up for your cin 3 to make sure it hasn’t progressed and that your symptoms of weight loss, abdo pain, lymph nodes etc aren’t caused by that. You should get an urgent referral back to a gynae-oncologist if you’ve had no follow up in the last few months.

If that’s all ok then investigations for CLL would be in order. Best wishes.

[Hidden in reply to Jm954]

I took that cin as a misprint for Cll.

[Liverpool2018 in reply to Jm954]

I had the cin removed last test was negative for hpv so they tested the white cells when I go to sleep wake up sweating extremely thanks .

[Newdawn Administrator]

Hi Liverpool2018,

I’m concerned that you’re receiving advice on this site on the presumption that you’ve been disagnosed with CLL when in fact you have the condition ‘Cervical intra-epithelial neoplasia (CIN) which is a term that describes changes in the squamous cells of the cervix.

CIN is not cancer, but you may need treatment to stop cervical cancer developing. You may hear doctors call CIN a pre-cancerous condition.’

In honesty, I think you need this condition treating as Jm954 suggests and then seek the haematology appointment arranged for further investigations.

Until that time, unless CLL is diagnosed, I think it’s unwise for CLL patients on this site to speculate on your condition or offer advice.

Wishing you well and here to help you if you’re unfortunate enough to receive a CLL diagnosis.

Best wishes,

Newdawn

[StasiaURos in reply to Newdawn]

Great post Newdawn

[Hidden in reply to Newdawn]

I agree. You are at a prime age for gyn issues. I have elevated lymphocytes of 11.27 and white bood cell count of 17.9, and I don't have these types of symptoms. Everyone is different of course, but I would be seeing my ob/gyn for this if I were you.

[Newdawn Administrator in reply to Hidden]

Do you have a CLL diagnosis Melodye?

Newdawn

[dandelup]

Hi Liverpool, I think you need to go back to your gp and insist on an earlier appointment to see a haematologist , you can’t stress yourself out waiting till September, has your medical practice another doctor you could see? Or is there another surgery you could register with? Don’t worry about upsetting your doctor it’s you that’s the important one here.

[JigFettler Volunteer in reply to dandelup]

Agree... or get another GP ASAP.

[Liverpool2018 in reply to dandelup]

I know the other doctor is saying I have a infection but my own gp said definitely no infection .i can't sleep because wake up sweating and I am getting really dizzy .thank you for your time

[oldguy68]

I am not a doctor but I would say through my experience you definitely should change Dr. Plus go see an oncologist hematologist now or the advice I see that people have been giving go to the hospital but I agree I would not wait until September with your symptoms. When my white count was 40 the oncologist was putting me on chemo. I decided that after 3 years of seeing her and looking at this site and on the computer that that was awfully low count to put someone on chemo so I went for a second opinion. That led to not taking the chemo and I'm still on wait and see and that was about 2 years ago. first oncologist would spend about 10 minutes with me the new one who I just saw I was in with her for an hour. she is so much better about going over your numbers and explaining to you what they mean. In my opinion no one should take the advice of your pc md as they generally are not going to be educated on CLL. Good luck.

[2004CLL]

I live in the US, if I did live in the UK I would be heading to Barts &The London Cancer Center as fast as I could. You need to have a hematologist-oncologist specializing in CCL managing your care, they have them at Barts!!!

[livinglifewell]

I'd say if it's been a couple of years, a revisit to a hematologist is in good order.