One day at a time

[Sallyurnotal]

Just diagnosed with cll andsll. I have just returned from Mdanderson after having a bone marrow biopsy. I just received the results this week. I really don't know what to expect. I itch so bad I could scream and my bones ache horribly. Any advise would help.

[Newdawn Administrator]

Hi Sally, so sorry to hear of your diagnosis and it's understandable that it's left you reeling.

A bone marrow biopsy isn't a common diagnostic procedure for CLL. Are you able to fill us in with any more details? Did specific symptoms bring you to this point and have MD Anderson given you any idea of staging yet? You're certainly in very good hands there, I envy you that.

I'm wondering if you mentioned the itchiness and bone pain to the medical team there to ascertain whether it's CLL related. Many people, including me report itchiness especially at night and bone and muscle pain isn't unusual but quite often the medics don't attribute it to the CLL. There's still much to be learned from the anecdotal information shared on here around common symptoms.

You'll find a wealth of information and support on here. You may wish to restrict your more personal posts to the community (you need to tick the box when you submit your post) to avoid your posts and the replies becoming public on the net.

Is there more that you could tell us in order for people to advise you more appropriately.

Warm best wishes,

Newdawn

[Shortcake2 in reply to Newdawn]

I think it must just be standard tests for MD Anderson to do scans and BMB your first visit. I had a CT San, PET Scan, tons of blood work and they repeat the scans and blood work, each time I go back. Is this not standard procedures at other cancer centers? Just curious.

[MsLockYourPosts Passed Volunteer in reply to Newdawn]

You can also edit to restrict your post - little down arrow next to like.

[AussieNeil Administrator]

I hope that learning CLL/SLL is the same chronic disease is reassuring to you. Read the pinned post healthunlocked.com/cllsuppo...

Newdawn has given you good advice; our community can help you more as you find out and share more of your results from M D Anderson.

We all start off overwhelmed when we learn of our diagnosis, but treatment may never be needed and if it is, you are attending one of the best CLL centres in the world!

Neil

[Hidden]

I am a patient at MD Anderson. When I have concerns, I send an email to my doctor. His nurse practitioner will follow up. Hopefully, you have access to the electronic patient portal which has the email functionality and also your lab results.

When I first went to MD Anderson, mentally and physically I was at an all time low. After the first day, I walked out as if I had hit the lottery.

[Shortcake2 in reply to Hidden]

Who is your Dr at MD Anderson?

[Hidden in reply to Shortcake2]

Dr. Wierda is my doctor. In the beginning Dr. Thompson would assist him. Both are brilliant doctors and they have "excellent bedside manners." My schedule these days is a visit every 84 days (28 days in a cycle). I get the battery of blood tests, see Dr. Wierda's PA, see Dr. Wierda and have the dreaded CT scans. I will probably get a BM biopsy later this year (number 3).

[Shortcake2 in reply to Hidden]

I also go to MD Anderson but have yet, got them to give me an answer when I message them. It's always the same, "we'll talk about it when you come in ."

[Hidden in reply to Shortcake2]

I would bring it up with the doctor the next time you see him.

[captainboot7]

You went to the right place. Get on a clinical trial soon. I am on the oral drug ibrutinib at MDA and am now in complete remission but that took 5 years after FCR chemo and a stem cell transplant and Donner Lymphocyte Infusions that all eventyually failed. Have some patience and be strong and put some real faith in God and the fine doctors at MD Anderson

Captainboot7 in Colorado

[SouthFloridaLady]

Sally, are you seeing a CLL specialist at MD Anderson?

[djgolding]

I had a crazy overall skin itch, which my GP said was dry skin, although it looked OK, he gave me a script for Dermol that I use as a post-shower emollient. He also gave me E45 anti-itch for immediate use, which I only used for the first few days to remove the crazy itch. Since then absolutely everything has been fine and I'm still using the Dermol.

My GP reckons that the dry skin may be a side effect of immune-deficiency but not necessarily - however its under control and I find my skin is healthy and heals well.

[newyork8]

You are in a great place. They will figure it out once they are clear on the diagnosis.