Worried

[Spiritlove]

I have been on W and W since 2007. Visits to Consultant gradually moved to annual which I was pleased about. I went on Friday for this check to find my blood result had gone up 30 over the year. Usually I only increase by 8 or 9. My Consultant was concerned and also told me my platelets are high are 400, she has never found a problem with them before. Couldn't find anything alarming when she examined me,, just the usual smallish lumps in my neck that go up and down. I have had a chest infection fluish type bug for the last 2 weeks, been really poorly and Friday's appointment was the first time I had been out for 2 weeks, she did wonder if that had had an affect on the blood. But she did talk to me about treatment, usually she says she hopes I won't need it but now she says I will but not at present and wants to see me in 6 months. I am very scared, the thought of chemo I find terrifying. I have been ill all winter with many colds and sinusitus but that seems normal for me for winter and I get very tired, have to paced myself. Lynne

[Bubnojay]

Hi Lynne

Thought I'd just say that honestly chemotherapy is not all that bad, sure it pulls you down and we'd rather not need it, but it is definately not something to be terrified about.

You may find that when you need treatment other options are available, but none are without problems or side effects, and FCR remains gold standard at the moment. If your consultant was very worried she would not leave 6 months pass without seeing you

I wondered how your iron levels are as you had problems with them, if your haeloglobin is low that could contribute to your tiredness.

I so understand your being scared but try to think positive, hard though it is.

We can have treatment and that is so important.

Wishing you better days ahead, as Brian says stay strong.

Bubnjay1

[Spiritlove in reply to Bubnojay]

Thank you for your kind reply. My total count is now 99, I didn't like hearing that. Strangely although I have had iron levels low in the past and had to take iron tablets, she said it was fine this time 1.5. My fatigue has been dreadful, even though I have a long glass of blended raw veg with fruits in every day. I don't have the energy to get out and see a friend for coffee even. Mind you I have had a very difficult year caring for my 89yr old Father in his own home alone, with heart failure, one eye, and now alziermers and vascular dementia so he is getting worse all the time. Only me and my husband to shoulder the responsibility and carers twice a day. I have been so strained and stressed I wondered if that had put my count up. Have you had chemo? I asked my Consultant if I would loose my hair and have sickness with it and she said yes which didn't help! Thanks Lynne x

[Bubnojay in reply to Spiritlove]

Hi again

With all that is going on in your life no wonder you feel tired and drained.

Yes I have had chemotherapy, and I told it was the one often used in FCR. my hair thinned a bit but did not all fall out and was nothing as bad as I dreaded.

Hopefully the reply from Neil and me has eased the tension a bit. It's awfull feeling alone and I'm sure our community will be here for you.

I don' t juice but I do take green tea tablets, and try to keep a balanced diet of fresh food that cover all the food groups.

Sending a big cyber hug, try to keep your chin up and come vent here when things get on top of you.

Best wishes

Bubnjay1

[Spiritlove11 in reply to Bubnojay]

Thank you for your kind reply. Yes I am very drained and stressed with my Dad, he is extremely demanding and worse so now that he has dementia. I am glad your experience of chemo wasn't as bad as feared, I hope you have benefited from it. Thanks for the hug, yes been feeling very alone with this.

Best wishes Lynne x

[PE1234 in reply to Spiritlove]

Lynne

It's no wonder you are feeling fatigued with looking after your Dad .

The stress can make you feel low in its self ,let alone wondering if you are going to have to have treatment .

I havnt had chemo and am on Ibrutinib as a first line treatment and I can honestly say it's not that bad .Infact the longer I am on it the better I feel .

Try not to worry (easier said than done I know )

If you keep worrying about what may happen you will knock your self right down .

Believe me I am a born worrier and after I got myself in a right state worrying I took a good look one step back and listened to the good people on here and thought (if they can do it so can I )

The summer is just around the corner and I don't care what anyone says things never seem as bad when the sun is shining .

Allow some time for yourself .

Take care

Brenda🌻

[Spiritlove11 in reply to PE1234]

Thank you Brenda, good to know that I am not the only born worrier on here Is Ibrutinib the newer drug with less of the harsh side affects? Thanks again Lynne x

[PE1234 in reply to Spiritlove11]

Yes it is Lynne ,but it isn't without side effects .When I first started I felt like throwing the meds out of the window but I'm pleased I didn't .The different side effects don't last long .I was nauseous at first and I have had a variety of things over the las ten months but nothing major .

By the way you did mention about losing your hair with chemo but not everyone does .

Somebody actually said to me a while ago Don't worry until you have something to worry about .

Try to listen to your body .If you feel exhausted give in to the tiredness ,don't fight it .I know now if I push myself too hard I am going to feel exhausted and make myself feel quite poorly .

I have also learnt to say no most of the time .

Take care

Brendaxx

[AussieNeil Administrator]

Your consultant can't have been too worried about your situation if she only wants to see you again in 6 months, so I'd suggest it is a little premature to be concerned about treatment of any kind. An Absolute Lymphocyte Count doubling time of under 6 months is one trigger for treatment, but the first count needs to be over 30 before that rule is used and in the absence of other symptoms, CLL specialists would most likely monitor it for a while to see if it stabilises or continues to climb rapidly before starting treatment.

The normal range for platelets depends on pathology laboratory and country. The upper limit is commonly 400 in the USA and UK and 450 in Australia, so while your platelet count was high, it's still inside the normal range - just. Do you know whether your previous platelet count results were also high?

If your consultant was particularly worried, I'd suggest she would be asking to see you in 2 or 3 months, not 6 months, so while you may need treatment eventually, it may well be far enough in the future that kinder, non-chemo treatments may well be standard by then.

Neil

[Spiritlove in reply to AussieNeil]

Thank you for your reply Neil. Now my count has gone up by 30 the total is 99. She didn't explain what a high platelet count means and she has never mentioned platelet count before so this is the first time it has been out of the norm. I wish they would get on and bring the kinder treatment in for first time patients for us all. Thank you for your help. Lynne

[AussieNeil Administrator in reply to Spiritlove]

So if your increase remains at 30 per year, your doubling time (to 198 now) is over 3 years away, which coincidentally is about the same as mine. We have members with counts over 200 still in watch and wait, so I hope you can relax now. To get to a doubling time of under 6 months, your increase in the next 6 months would need to be a further 100 or 200 over the next year. That's a huge jump from 30, which may have just been because you've been ill! Your next blood test result may well see your ALC lower than 99...

Neil

[Spiritlove11 in reply to AussieNeil]

Thank you so much, seeing it written down like that has made me feel a lot less anxious. Long time to wait until September so thank you for easing my worries, I have been feeling so low about it. Best wishes Lynne

[CLLCalifornia-USA]

Lynne,

My first treatment was FR for 6 months which put me in remission for 5 years. I was told I would lose my hair but they were wrong. However, I cut my hair short and donated it. If I had lost my hair, it would have been an adjustment but I would have survived that also. It's amazing what we can tolerate. The unknown is usually worse than the actual outcome. When I read everything you are dealing with I am amazed at your strength. I will keep you in my prayers. Good luck with the care of your father.

Kind regards,

Sally

[Spiritlove11 in reply to CLLCalifornia-USA]

Oh its good to hear that you didn't loose your hair, very good of you to cut it short and donate it. Yes times are very difficult for me with a very poorly and demanding father to cope with every day. Thank you for your prayers Sally.

I do hope you are still in remission. best Wishes Lynne

[CLLCalifornia-USA]

I have a battery of blood tests this week along with a PET scan on Thursday. Monday I will meet with my oncologist to determine the outcome of the tests and to decide if I can put off treatment or start a new regimen now. Numbers have been climbing and lymph nodes are getting larger. I'm really at peace with whatever the outcome. I feel blessed to have so many lovely people in my life. I find strength through people at this forum. So much information to consume and people fighting the same battle. There is always someone who understands and willing to share❤️ May you continue to have the strength to find something beautiful in each day.

Be kind,

Sally

[Spiritlove11 in reply to CLLCalifornia-USA]

Do hope it all goes well Sally, yes people on here are lovely as I have found out this week, so supportive. Sending you light and peace Sally. let me know how you get on Lynne x

[CLLCalifornia-USA in reply to Spiritlove11]

Thanks for the note. I will give an update when the results are in and I know what the next step will be. Sally

[jazzy-annie]

Hi Lynne, I was diagnosed at 51 last October with a wbc of 119. I feel fine and am still in w & w and don't hv to go back till sept. Like you in was terrified but accept it now and feel I will cope with whatever comes my way. Sure I have my bad days, but then am ok again. I went to see a naturopath and that has helped me significantly. The wbc count can go up when you are I'll, but then goes back down again very often. Mine did anyway. All I can say really is try to be as kind to yourself as you possibly can under the circumstances you r under and breath deeply. Hugs. Anne

[Spiritlove11]

Thank you Jazzy annie for your lovely reply. Seems your count was quite high when you were daignosed. I was diagnosed when I was 48, 9 years ago at a count of just 6! So its been a slow progress for me up to now. Lynne x