tony H.
Posted by

Early Days HELP!

tony H.
Posted by
30 Oct 2015

August 2014 and I find a lump behind my right ear my GP tells me not to worry its just a cyst. I go away happy then September 2015 I have a few lumps in my neck that havent gone away.

I go and see the GP again expecting the same response but am now told I need to get it checked out on the 2 week cancer referal but 'not to worry chances are it will be nothing'. Whilst I am waiting to see the specialist I get tonsilitis and nip to the emergency GP to get some antibiotics, she looks at me oddly and says the tonisilits is probably the cancer. Completely shocked I say 'what cancer?' to which she responds didnt you know you had cancer, to which I respond no I had no idea!

My world suddenly starts to spin.

I am rushed into A&E by my GP. A&E are slightly annoyed and very quickly kick me out as they don't see it as an emergency and think that the GP has over reacted! What a day!

I then go and see a top specialist at the Christie in Manchetser who is brilliant and tells me that he is pretty certain I have CLL and that it is just watch and wait, especially as I am feeling fine and have no real symptons but will have more blood tests to confirm diagnosis.

I feel slightly relieved and still having no symptons whatsoever and feeling completely normal I go away relatively happy... 

Two weeks later go back and find out that actually its not CLL it's T-PLL which is very rare. Great!!!!!! Just great! And the long term treatment is a stem cell transplant! Could things get much worse???!!!

Well I am now just about getting over the shock of it and recently had my bone marrow biopsy. I will see my specialist to confirm next steps, next week.

Very oddly since I found out I had T-PLL I have started putting every ache and pain down to the cancer and am convinced that my body is shutting down. Having spoken to some great peope who have been through a stem cell transplant I can see light at the end of the tunnel and now know my brain is playing many tricks on me!

I know I have tough times ahead very tough times but I am determined to beat this and I have found support from other peope really valuable. So if you have been through this could you share your experiences with me it would really help. I'll keep posting if people are interested in my story. When I am 100% recovered I am going to spend my time rasiing money for these charities which I had never heard of before! 




Thank you so much for getting in touch and sharing your experiences so openly. Your diagnosis sounds a bit of a whirlwind and it's no wonder that you were shocked when you received your correct diagnosis!

It sounds like you're beginning to get your head around things and I'm glad that you've had an opportunity to talk to others who've been through the transplant process and that this has helped you. I'm a transplant survivor myself (CML) and we have a number of other patients who have recently been through transplants and written blogs albeit for different blood cancer types including Josie Moss and Mark Noblet which you may find useful to read.

Anthony Nolan also have an excellent booklet on the transplant process which is an excellent starting point to give you an idea of the procedure and what to expect:

Our Patient Experiences team are also here to help you with any questions that you may have and are available at or alternatively on 0808 2080 888.

As you rightly identify T-PLL is a very rare form of blood cancer so having people like you to blog about your experiences can only help to raise awareness and help bring others forward to share their own experiences. With that in mind we would love to help you find others to share their experiences of having a transplant with you and would like to put out a Facebook post on our Facebook page with a link to your blog so that others can get in contact with you. Would you be happy for us to do this? If so, do drop me an email at and I'll get a Facebook post prepared.

Thanks again for getting in touch and all the best going forwards. Have they found a match yet for you on the bone marrow register?


Hi, My husband was diagnosed with ALL 7 years ago. 

It was all a whirlwind shock from thinking he had strained his leg and popping to the Doctors to being diagnosed with Leukaemia by the end of the day.

It's a long story but Nick eventually had a Bone Marrow Transplant and is back in full time work and living life to the full. (Just with a few niggles)

We wish you all the best and we are here to support you and your family.


Hi Tony

our son has a diagnosis of ALL and he too has a rare subtype, Near Haploid High Risk ALL. This means he too may need a stem cell transplant and doners have been found and at the ready. There is little known about the outcome for our son although currently the prognosis is looking good. We have spent a long time in and out of hospital with him and often feel a little out on a limb due to the nature of his type ALL and being unable to find much information that directly relates to his subtype. We are hopeful a full recover, however we still have a long road ahead. Onwards and upwards and all the best to you in your ongoing treatment.



Paul Lockyer Hi Tony 
I like you was diagnosed with T Cell PLL, same as with enlarged glands around ears & throat. Blood test in the morning & admitted to hospital that night with treatment starting the following week had chemo August to Dec 13 into remission & BMT in February 14. All this was at a very fast pace so just went along with flow no time to think or worry.
Since my bone BMT I have suffered GvHD (which is a normal reaction) I have found a USA web site which has some very good information sheets if you go to the resources page there are several different booklets that have information to help you to prepare for BMT & recovery. You must take things easy & make sure you get plenty of rest. Your body will go through a lot during your treatment respect it & take note of anything different. Good Luck I hope it goes well & your back fighting fit soon.
THINGS THAT HAVE ALWAYS HELPED ME THROUGH ARE FAMILY SUPPORT & LAUGHTER PLENTY OF LAUGHTER. Recently a doctor told me to make sure you care about yourself & appearance when visiting hospitals etc. this encourages the docs & nurses to feel that their efforts are appreciated.

Home - nbmtLINK

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Hi Tony,

I was diagnosed with ALL back in July 2014 and eventually achieved remission about a year ago after being treated by The Christie and Royal Marsden in Sutton. I had a stem cell transplant in The Christie earlier this year in February after finding my sister was a match. I was always going to need a transplant such was the resistance the ALL was putting up! 

Since my BMT things have been going quite smoothly and I started a phased return to work in mid-August, although I have suffered GvHD symptoms including itchy skin / rashes and minor issues with my mouth (initially a lack of saliva) but both of these were tempered through steroid treatment. I'm off the steroids now but unfortunately the symptoms have returned, although to a lesser degree, but I'm able to get on with life and working part-time so it's not all bad. I still have the odd day where I'm feeling slightly off or more tired than normal but as long as you get plenty of rest things should go OK. 

Stay strong and keep your head up. I saw the BMT as a target and actually found the infusion a bit of an anti-climax (only took half an hour!) but getting to that point was a real achievment for me as remission was initially hard to come by. Good luck with the rest of your treatment. I'll be posting an update of my own soon on the community so if you have any questions let me know!