LCH

FormerMember over 13 years ago

3 replies
11 subscribers
6090 views

Last week we went to get the results from my daughters (15) Scoliosis scan at hospital, as she had been suffering back pain with it. we were then told that she had a small chance of cancer, as she had some unrecognisable hot spots. 5 days later she is hospital being tested for LCH. Googled it and came to this site.

They have bone biopsied and skin biopsied her for it and they are just waiting for the results to confirm. Scans show it in multiple places on spine, pelvis and long bone in leg and possibly skin.

I can see it's technically not a cancer but does anyone here have it, or being treated for it etc, etc.

Feeling lost, numb and then incredibly shaken and tearful. Her Dad is the same. Got back from hospital last night with her, it's quiet as she is recovering and she is just chilling. I have found myelf exhausted after boughts of excessive cleaning or doing a job/s around the house.

i think she is actually coping with this better than we are.

FormerMember over 13 years ago

Hello Sue and welcome to the site.

I have scoliosis myself but not LCH so I cant help with personal experience. As a scoliosis sufferer myself, I wanted to know more about LCH and whether there was a possibility of spread of my cancer to the spine.

I found this information, which may ease your mind a little.

Treatment is guided by extent of disease. Solitary bone lesion may be amenable through excision or limited radiation. However systemic diseases often require chemotherapy. Use of systemic steroid is common, singly or adjunct to chemotherapy. Local steroid cream is applied to skin lesions. Endocrine deficiency often require lifelong supplement e.g. desmopressin for diabetes insipidus which can be applied as nasal drop. Chemotherapeutic agents such as alkylating agents, antimetabolites, vinca alkaloids either singly or in combination can lead to complete remission in diffuse disease.

Good luck to your daughter.

heywood

FormerMember over 6 years ago

Hello suechick43,

I'm wondering if you are still on here? I'm trying to find parents dealing with LCH or have delt with, I feel so lost. Would really like to speak to other parents.

Thanks x

FormerMember over 3 years ago in reply to FormerMember

Hiya, I know this thread is really old, but I got my sons results back today and he has LCH quite a large lesion on his femur and I’m not sure if anywhere else, we are seeing the doctors tomorrow. I wondered how you have been?

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LCH