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Is their any support for people with late effects of A.L.L. as well as the chemo and the cranial radiation? Im struggling to find support

A MyLeukemiaTeam Member asked a question 💭
Uk england

ALL 1973 -1977 late effects multiple brain tumours, 17 spine tumours ,plyomorphic adinoma tumour bowel absorbtion affected - perniceous anamea,gall bladder, cognitive issues and difficulty processing infomation, c.p.t.s.d. chronic fatigue, right sided weakness, loss of right sided face feeling, hearing and taste. Focal seisures, servere needle phobia..have to have entanox for anything involving a needle so treatment fo anaemia not possible.

Where do I go for support ?

August 13
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Reactions
A MyLeukemiaTeam Member

Have tried macmillan and leukamia care as well as other charies..it isnt in the drs remit to help with anything other than medical need, but even asking them for help with ptsd ..isnt possible as im over 25!

August 14
A MyLeukemiaTeam Member

I am in west sussex England

August 14
A MyLeukemiaTeam Member

Wish I knew…you are in England & things there are so vastly different than here. Have you reached out & asked your medical team for guidance?

August 13
MyLeukemiaTeam

What you've been through — surviving ALL in the 1970s and then navigating decades of late effects — is truly extraordinary. The strength that takes is immense, and it makes complete sense that you're looking for support now.

The late effects you're experiencing are recognized consequences of ALL treatment, particularly Show Full Answer

What you've been through — surviving ALL in the 1970s and then navigating decades of late effects — is truly extraordinary. The strength that takes is immense, and it makes complete sense that you're looking for support now.

The late effects you're experiencing are recognized consequences of ALL treatment, particularly from that era when cranial radiation was used more aggressively. These can include:

- Cognitive difficulties and "chemo brain"
- Fatigue
- Neurological effects (seizures, weakness, sensory changes)
- Secondary tumors from radiation
- Digestive and absorption issues For finding support, here are some strong starting points:

- Leukemia & Lymphoma Society (LLS) — they have dedicated survivorship and late effects resources and can connect you with specialists
- Macmillan Cancer Support (if you're in the UK) — they support long-term survivors with complex needs
- Childhood Cancer Survivor Study (CCSS) — specifically researches and supports survivors from your era
- MyLeukemiaTeam — the community there includes long-term survivors who truly understand late effects

Keeping a detailed symptom journal to share with your care team is also strongly recommended, as it helps them track changes and act quickly.

Given your needle phobia, it's worth asking your medical team specifically about a pain and anxiety management specialist who can work alongside your treatment team to make procedures more manageable.

You deserve coordinated, compassionate care — please don't stop advocating for yourself. 💙

August 13

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