W/b count 100,000

[littledab]

Hi everyone, blood work back, i went up from 69,000 to 100,000 in 3 months!! Feeling down, but trying to stay positive!! I will not let blood cancer Define who i am.. i will fight this!!

[Marie_14]

Yes you will and can! My husband was told his blood cancer was so rare there was no treatment!! Wrong! There was and he went into remission. Sadly he died from an unrelated condition.

Do your research. There are drugs out there but they are not always spoken about because they are expensive. Do not let this get to you! You can be cured of blood cancer. Isn't this blood cancer awareness week?

Hugs.

Marie x

[littledab in reply to Marie_14]

Hi Marie,

So sorry 😐 to here about your husband.

I will do research thank you!!

And yes this month is blood cancer awareness!!

Xo

[Marie_14 in reply to littledab]

Look at the specialist hospitals near or even far from where you live. Look at the people who are experts. My husband's first Haematologist told him there was nothing he could do. My husband said: " surely there must be something, a tablet?". Haematologist: " Would you take tablets?". I promise you this is what he said. He took the tablets for 12 months but I noticed he was going downhill.

So I researched and discovered a woman in a London hospital who advised we get a second opinion. She told me the hospital and doctor to go to. Told first Haematologist and he really didn't want us to go to our chosen hospital. He wanted us to go to another one! I dug my heels in and said no we wanted to go to the hospital I had mentioned. Then he said he didn't know any doctors there. So I provided him with the name I had. He looked taken aback but then agreed to it. My husband was treated by a consultant who had a very good reputation. After a week he put him on a different tablet. He started to show signs of improvement straight away.

In order to get the go ahead for this medication he had to have the agreement of his fellow consultants in the hospital. As I live in the UK, when expensive cancer drugs are used a case has to be made to the Cancer Care Fund. Think that's what it's called. Amazing how soon you forget? Anyway he got his approval and my husband got his treatment. He got better bit by bit. One or two little setbacks along the way but he eventually went into remission. If we had not got that second opinion that wouldn't have happened. Sadly as I said he died of an unrelated condition. Life eh? Maybe his treatment will be used on others with his condition though, as they had never tried it before. At least not in this country!

Good luck to you and don't ever give up! There are new treatments coming along all the time. Some you will have to research but it is worth it! Hospitals and consultants too. Get the best if you can. Fight it every step of the way!

Hugs to you.

Marie x

[HAIRBEAR_UK Administrator]

Hi littledab thanks for sharing with us, indeed it is hard to remain positive when CLL is progressing fast and symptoms/ infections keep you under the weather.

I get the impression from your posts that you may be in the US? Are you under the care of a consultant with specialist CLL knowledge? The advance in proven treatments for CLL is moving fast and today there are several effective therapies, plenty of reason to be optimistic. A specialist will be able to put your mind at rest and help you with appropriate information and care.

You mentioned that you were not seeing someone again until March in an earlier post, as you now have new blood results are you seeing someone sooner.

Sorry so many questions, yes I agree CLL does not define us, but when under the pressure of seeing counts increase rapidly it does become a worry. I am sure other will chime in to share how they cope and to share information.

Where about are you? Perhaps we can signpost you to relevant information?

Best wishes

Nick

[littledab in reply to HAIRBEAR_UK]

Hi Nick,

Yes i am in US

And i am under hematology care

My appointment is this month,

They are not really worried about the W/b count, it is more when the Platelets and hemoglobin, Lymphocytes number change

Mine have been stable.. so i am ok with that part.. it just amazing me how fast those w/b cells jump up..

Thanks for you concern!!

Littledab

[honey1969 in reply to littledab]

Hi Littledab!! How are you doing? Just saw this post and was wondering how things are doing?

jackie

[littledab in reply to honey1969]

Hi Jackie

Thanks for reaching out

On a roller coaster you know

Now i have this rash. Been to dr. Two different creams. Spread all over body have no idea

White blood over 135,000

How are u doing??

Debbie

[honey1969 in reply to littledab]

I’m sorry to hear about the rash. I’m doing well. I go to see my doctor in October for labs. Praying all is well. I still get so anxious. I try not to let myself worry but can’t help it. Prayers sent your way!

Jackie

[littledab in reply to honey1969]

Thank you!

I feel the same way

I go back in October also

The anxiety is crazy with me also

Keep in touch!!

Debbie

[Gerowgiraud]

I Have acml My wbc went up to 163. Drs have put me on Hydroxuryea whivch has lowered wbc to 20s an 30's. You may want to look into it.

[littledab in reply to Gerowgiraud]

Thank you

But mine are up to wbc 130,000 and still no treatment..

[MsLockYourPosts in reply to littledab]

There are CLLers whose WBC goes up to 500,000 and beyond without a need for treatment. Most important with CLL is seeing a doctor who focuses on it, not a general hematologist. There are many top specialists here in the US. If you give your general location others here may be able to help you find one for ongoing care or a second opinion as needed. cllsociety.org also has the option of doing an online video conference with a specialist for those in the US.

I hope you are able to get your rash under control!

[Hades82]

Hi there. Been a member here for a while but don't post often. Not in US so not sure what your thoughts are on self medication. Have a rare type of leukemia (t cell lgl) and spent almost a year watching and waiting on doctor to start some kind of treatment. None forthcoming, I did some research and testing with cbd and thc oils. The cdb oil has none of the psychological effects. Taking a few drops of this a day has calmed my anxiety and my blood levels have been really stable over the past six months, which is a huge improvement over my previous 12 months. Do a little research into yourself, you never know it may help you too

[Gerowgiraud]

I have acml.( atypical chronic myeloid leukemia) and am transfusion dependent with almost no treatments available. High wbcs and low platelets are the dangers.MY WBC WENT UP to 163. Now they have started me on Hydroxyurea. a low grade chemo, and my wbcs have dropped to between 20 and 40s, sometimes a little higher.Also slows hemoglobin a little. Ask your DR. ; Hydroxyurea

[littledab in reply to Gerowgiraud]

Thank for writing back yeah my WBC is almost 200,000 my hemoglobin is low and it’s 9.5 and I have to go for a CAT scan at the end of the month she wants to check if there’s any lymph nodes on the organs I just got Bell’s palsy‘s for six weeks already it’s really crazy to eat and drink my left eye is killing me I hope you feel better praying for you thanks for writing write back soon