W/b over 200,000 And hemoglobin is low nine

[littledab]

Hi everyone

I know I’ve been out of the loop I’ve been going through a lot of things every month I had a rash then I got a cold cough and then strep throat

and then the next month I got bell palsy for two months already I’ve have to go in for a scan on Thursday CAT scan i have to drink that juice she wants to check if there’s any lymph nodes on my organs she said we’re probably going to start treatment because of the hemoglobin is low but I don’t know what treatment yet I have to see her the following day after the scan..

I am A little down but I’m trying to be positive and stay strong any feedback would be great I appreciate it thank you Debbie

[2003UK Champion]

Hi Debbie, I am not surprised you are a little down (probably an understatement) because you have so much going on emotionally and physically, so I am so glad you have posted here to people that will really understand you. Don't forget the Leukaemia Care Charity helpline is open Monday - Friday 9am until 5pm and they have a special evening service on a Thursday and Friday 7pm - 10pm. The number is freephone 08088 010 444 if you need a chat. I find writing all my fears and questions down that I want to ask my medical professionals can help a little bit. Take care, look after yourself and spoil yourself and please let us know how you get on

[littledab in reply to 2003UK]

Thank you!!

[HAIRBEAR_UK Administrator]

Hi Debbie thanks for posting. My, you have been up against it. It is not surprising you feel down, it must be hard to stay positive with so much going on, low HGB just makes things all the more difficult.

Good luck with tomorrow's scan, keep us posted on how you get on. I found approaching treatment difficult at times and coping with repeated infections and side effects does wear you down.

Has your haematologist talked with you about your immunity and repeated infection rates, what can be done for you to help manage this? Good to discuss this before treatment decisions and when starts.

Treatment time can be difficult, it does take time to feel better and remain positive, but things will improve. Stay vigilant and as strong as you can, the positive will come when you know more of what is next. You can do this, best wishes for you the palsy improves soon.

I am sure others will chip in soon to offer their experience and support.

Nick

[littledab in reply to HAIRBEAR_UK]

Thank you Nick

Scan tomorrow than I go oncologist appointment the next day hopefully she’ll get the scan and yeah she did say that she was going to start some kind of treatment but I don’t know what it is because my hemoglobin is low..

Talk soon Debbie

[littledab in reply to HAIRBEAR_UK]

Hi Nick the scan came back they found two dark spots on my lungs and my spleen is in large she wants to do a bone marrow next week in her office and another pet scan which the insurance has to approve a lot going on and I still have the bell Palsey.

Debbie

[HAIRBEAR_UK Administrator in reply to littledab]

Hi Debbie thanks for updating us. Positive news that your medical team are moving things along. These next tests will help direct therapy. Have you had a bone marrow before? keep us posted. I would not be surprised that your spleen has enlarged as your CLL has progressed, most of us experience this as treatment approaches. On a similar note try not to worry about the spots on your lung, there is no reason to think they may be sinister. I guess this is easier said than done, from experience I can relate to how difficult approaching treatment can be and the uncertainties and new procedures. You are not alone, keep talking, I am sure others will be in touch soon.

best wishes the palsey eases soon

Stay strong

Nick

[littledab in reply to HAIRBEAR_UK]

Thank you

No never had a bone marrow she doing it in her office

Scared with all

But trying to stay positive!

Thx so much talk to you soon

Littledab

Debbie

[HAIRBEAR_UK Administrator in reply to littledab]

Hi littledab thanks for your message.

I hope all goes well , of course it is all very scary... For me anticipation of the biopsy is worse than the procedure. The local anaesthetic removes most of the feeling during the process and gas and air is normally made available if you want extra support.

We are rooting for you, and for positive test results.

Best wishes Nick

[littledab in reply to HAIRBEAR_UK]

Thank you Nick!

Will write next week after the bone marrow..