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[SophieH22]

Hi I need some support, my dad has been unwell for a couple of months now, he was sleeping a lot and not eating. They did numerous tests, including a camera up and down, blood tests and then a CT scan. Eventually it was discovered that he has secondaries on his lungs, liver and spleen without knowing the primary location! Even though he is severely aneamic, platelets are really low too! And white blood cells also. At the moment he's in hospital because I took him (thank god) for the past week, only yesterday he had a blood transfusion and bone marrow test and today finally a liver biopsy. It seems that things are slow, is this normal? Has anyone else experienced this ?

[Marie_14]

My husband had a rare Leukaemia and it took 3 months to diagnose!! That is the normal prognosis for what he had but he was still alive 12 months later. There was no treatment we were told so he asked for chemo tablets. Then a year later I had been told to get a second diagnosis. So we went to Christie's which is a centre of excellence and he was put on a different and very expensive tablet. It worked.

He died from another rare neurological condition but was in remission from his rare Leukaemia. His spleen and liver was enlarged at the beginning but the mefication from Christies sorted that out. They didn't operate. He had a bone marrow biopsy a couple of times. Plus MRI scans.

Once he was in the system things speeded up. Whatever your Dad has I hope they know soon and put him on some treatment asap.

Marie x

[SophieH22 in reply to Marie_14]

Thank you so much for your reply, I'm so sorry to hear about your husband. Im so glad I found this site.

[Marie_14 in reply to SophieH22]

Sophie it was rotten luck that he ended up suffering another rare neurological condition. Were it not for that he would still be here! There are medications out there which can give people years. So don't be told there is no hope! Fight for the medication which can help.

Hugs to you.

Marie x

[liggo]

I think that you have to be a little patient whilst they carry out all the tests necessary to correctly diagnose the problem. Originally I was in Hospital for a week whilst I had numerous tests and transfusions both Blood and Platelets, I was an out patient then for the following five weeks before they diagnosed T Cell PLL, in my case, before I commenced Chemo.

If and I say if your Dad has any kind of Leukaemia they have to determine which one out of about 140 kinds, before any Chemo treatment starts. Your Dad will be in good care and monitored throughout the initial diagnosis period. Difficult times but you will get through it.

[SophieH22 in reply to liggo]

Thank you so much for your reply, I hope you are keeping well

[liggo in reply to SophieH22]

Thank you, I have T cell Prolylymphocytic Luekaemia which is rare or so I am told and doesn’t respond well to treatment, I enjoyed about twenty months of remisssion before if started to creep back, I am currently back on Chemo treatment. I have redness and burning sensation in my upper torso, face neck and ears, which at times gets a little uncomfortable, it is apparently groups of T cell granuloma’s. This part is new to me and my medical team don’t seem to know what to do about it apart from chemo. My white cells etc are so low at the moment partially due to the chemo. Hopefully all will turn out fine. Trying times but where there is a will there is a way. Hope your Dad is fine and you all have the strength to get through this. I wish you all the best.

[Littlenanna in reply to liggo]

I too have T cell prolymphacytic leukemia and haven't as yet started treatment. I hope they find out soon what your dad has. Keep us updated

[Littlenanna in reply to liggo]

Hi we've been in touch before and I'm so sorry yours had returned. Have you not had a BMT

[liggo in reply to Littlenanna]

No not had one, my consultant thought about it after I mentioned it and declined it.

[Littlenanna in reply to liggo]

I don't understand that. Why?

[Marie_14 in reply to liggo]

Liggo have you been to a Centre of Excellence for a second opinion? My husband had Atypical Chronic Myeloid Leukaemia. Apparently because of the Atypical bit it too was very rare. He was desperate to fight it and when the Haematologist he saw said there was no treatment and no cure he asked for chemo tablets whose name I have now forgotten!

Anyway 12 months later he was still here but not looking so good so I was advised to take him to a Centre of Excellence. Our nearest one was Christie's. We went there and he was put on a different tablet and amazingly he looked better and felt better after the first tablet!

As I said he was in remission when he died from an unrelated neurological condition. I will be forever grateful to Christie's however. They were amazing!

Good luck to you and think about having another opinion but at a Centre of Excellence.

Marie x