Hello,
My mother is 68 and has been diagnosed with Aleukemic Leukemia Cutis.. which means that the Leukemia is currently only in her skin and not her blood or bone marrow.
The doctor has advised us that it should develop into AML but its been a number of months and while she isn't doing great, her blood and bone marrow checks are still clear.
Its such a rare cancer, especially for it to start in the skin and while they haven't told us its terminal, the prognosis isn't good as this type of Leukemia is supposedly resistant to treatment. That said, the hospital haven't giving her any treatment plan and have more or less told us that she won't be a candidate for treatment when it does develop further as she is too "old" for a stem cell transplant and that her medical history isn't great so chemo may be too much for her system to handle... but my mother is a fighter so to see her brushed off like this is heart breaking for us and extremely frustrating for her.
My mother was always a young at heart woman and up until this illness hit she was really active... I just can't accept that she doesn't have some treatment options and we really want to bring her for a second opinion. We are based in Ireland so we really don't know what hospital or doctor to request a referral to in the UK... any advice would be greatly appreciated.
Thank you for any advice or experience you can offer.
Kind regards,
J
Hi and welcome to the Online Community, although I am so sorry to see you having to find us.
I am Mike Thehighlander and I help out around the blood cancer forums. I am so sorry to hear about your mum's diagnosis. Some blood cancer can indeed be rare bringing the challenges of the lack or research and treatment.
I had a search of the Online Community and ALC did not come up with any hits in the site history.
I was diagnosed with a rare Skin Lymphoma way back in 1999 and although I did have skin treatments for 14 years it did remain reasonably stable. it was not until 2013 that I had to have more demanding treatments including two Stem Cell Transplants (SCT) with cells from my brother. My first SCT was when I was 58 and the second when I was 59.
68 is at the very top age bracket for SCT but I do know folks who have turned 70 going through the process but it is all about their conditions presentation, other health conditions, the likelihood of it working and quality of life following SCT.
SCT can be a very demanding process with some of the strongest chemo being used. The basic principal is to kill the immune system and Bone Marrow then to regrow it. My recovery after my second SCT was a very hard 2+ years. It was not a good experience and rather demanding on both me and the rest of the family.
My case was put our for review across the UK and further afield and the combined information was used to make a plan. A second opinion is always a way forward. Your Haematologists will know where the best blood cancer centres are in the UK and should be able to give you the information.
If you are in Northern Ireland I am sure there is a referrals system but not that sure about The Republic. Referals to say The Beatson in Glasgow, Christie in Manchester or any other Cancer Centre of Excellence.
This is some Macmillan Info on Getting a second opinion
A cancer diagnosis can bring a lot of stress on a family but talking with people who are on the same journey can help a lot and will reduce the whirlwind wind that is rushing in your head. We do have forums where you can connect with others supporting family and friends through their cancer journey: Carers Forum and Friends and Family Forum
You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link. They may have some guidance as to a way forward.
We also have our ‘Ask an Expert’ section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.
When you feel up to it think about putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself.
To do this click on YOUR username, look to the left and select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names like my one at Thehighlander
Keep posting as we are around to help as best as we can.
