Acute Lymphoblastic Leukemia

[Farrpottery]

Is there a site like this for people diagnosed with ALL?

A friend of a friend in her late 20's was just diagnosed a couple of weeks ago. I was hoping to connect her to an encouraging place like this!

Thank you

Farrpottery

[Bubnojay]

How very sad farrpottery

perhaps one of the Lymphoma societies will be able to advise where support for your friend may be found. As your post arrived in the middle of the night here, guessing you are not in the UK.

With you for a friend she has at least some huggable support, hope you find an appropriate online group.

Best wishes

Bubnjay1

[MsLockYourPosts Passed Volunteer]

facebook.com/groups/AdultsW...

I hope this works. It is one of the only Facebook groups I recommend. Very well administered and great supportive people.

Are you planning to join for her or recommending that she join. Let me know through a PM and the Facebook names and I will PM the admins to be looking for you or her.

Pat

[lankisterguy Volunteer]

A Google search gets these links from reliable sources:

Support Groups - Leukemia & Lymphoma Society

lls.org/support/support-groups

The Leukemia & Lymphoma Society's (LLS's) support groups are the perfect place to talk with other people affected by blood cancers, including patients, family members and caregivers. ... The Leukemia & Lymphoma Society (LLS) Family Support Groups program gives patients and their ...

Support Groups tagged 'Acute Lymphoblastic Leukemia' | CancerCare

cancercare.org › Our Services › Support Groups

Support Groups for Acute Lymphoblastic Leukemia ... To learn more about CancerCare's telephone and face-to-face support groups or to register for an ...

Leukemia, Support Groups, Information, Resources | CancerCare

cancercare.org › Help by Diagnosis

Looking for help with a specific type of leukemia? We have pages for Acute Lymphoblastic Leukemia, Acute Myeloid Leukemia, Chronic Lymphocytic Leukemia, ...

Support Groups | Acute Lymphoblastic Leukemia | Patient Power

patientpower.info/acute-lym...

Apr 3, 2017 - Use the map below to find your local support group or find your country on the list to gain access to all national ALL patient support groups.

Acute Lymphocytic Leukemia | Cancer Support Community

cancersupportcommunity.org/...

Acute Lymphocytic Leukemia: what is it, risk factors, signs and symptoms, diagnosis and treatment.

Acute Lymphoblastic Leukemia Support Group - Drugs.com

drugs.com/answers/support-g...

Ask questions and get answers about Acute Lymphoblastic Leukemia. Our support group helps people share their own experience. 7 questions, 14 members, ...

Blood cancer support groups | Leukaemia CARE

leukaemiacare.org.uk/suppor...

Support groups. We know that a diagnosis of a blood cancer can be unsettling, frightening and upsetting, whether it is your diagnosis or the diagnosis of ...

Online Support Groups - Ped-Onc Resource Center

ped-onc.org/cfissues/mailli...

Jump to leukemia/lymphomas - Parents of children with ALL, Acute Lymphoblastic Leukemia. This group is for parents, adult friends, and adult caregivers ...

International Leukemia Support Groups for Leukemia Cancer Patients

resource4leukemia.com/topic...

International Leukemia Support Groups for Leukemia Cancer Patients and help from ... Groups. ALL-L - Adult Acute Lymphocytic Leukemia Email List (ACOR).

[Farrpottery in reply to lankisterguy]

Lankisterguy,

Wow! Thank you so much for all these great resources.

Sincerely,

Farrpottery

[pilantd]

It amazes me when I begin to understand how many forms of CLL that exists. Meanwhile, it boggles my mind to be told I have the "Good" Cancer "13q14". My experience is the disease becoming more and more aggressive. I meet with my oncologist on November 3rd. At the moment I'm taking Ibrutinib but the last 2 months watch and wait results have been dismal. This past month my focus has been to take the medication at the same time and drink at least 64 oz of water. On Friday I will learn if I'm resistant to I brutinib.

[Cllcanada Top Poster CURE Hero in reply to pilantd]

Don't be surprised if your absolute lymphocyte count [ALC] counts are raised, its an indication that Imbruvica (ibrutinib) is clearing the nodes.

Many oncologist still don't understand this and think disease is progressing when it is not... be certain you doctor knows about this rise ... its NOT treatment failure.

Patients have been taken off ibrutinib exactly at a time when it is working best!

~chris

[pilantd]

Thank you for passing this information along. After beginning treatment my ALC rose pretty dramatically over the first 2 to 3 months. Then, for the next 3 months the ALC dropped as quickly as it gone higher. Then, over the past 2 months the ALC flat-lined. My ALC is still at the high range. I'm scheduled to see the oncologist on Nov 3rd to see what my count is. This past month I've been really disciplined to take IB at the same time and have made sure to drink a lot of clear liquids.