Hi all im 39 years old i was dignoised with rare ALL lymphoma in may and quicky started UKALL treatment … i have went through first 2 phases of chemo and radiation and in the last month have done 2 24 hour methotrexate… im starting consolidation phase one in 2 weeks … but im.just so worried about my life and break down crying a lot as i was superfit before been dignoised… sorry for venting . But just looking for some help . Thanks
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Hi @Paulmufc I am really glad that you have found us, welcome.
I have a different blood cancer, but felt so, so lonely and isolated for a long time.
I think this forum is the one place I could share how it really was for me and I know others, perhaps with different blood cancers and treatment plans would understand.
You certainly have not come across to me as venting, you have taken the courage to be really honest.
Perhaps remember what you and your body have gone through since May, I am certainly not surprised all your thoughts and emotions are spilling out now.
I think crying actually stopped me stuffing my emotions down which has never done me any good health wise.
Perhaps just give yourself time and be ever so kind to yourself.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
Please do keep posting as I look forward to hearing more about you.
I am actually fitter today that I have ever been in my life, I have built myself up, slow and steady wins the race.
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Dear @Paulmufc,
Welcome to the forum, I am sorry for the reasons that bring you here but I think this will provide a really great outlet/resource for you.
You have been through such a lot in the last 5 months, it is no wonder you feel emotional. A diagnosis such as this really does change everything. Have you been offered any emotional support through your treatment team? Many people in your situation will need this at some stage and its completely normal to actually not be OK!
Do you have a good support network?
As you go through the UKALL treatment you will get to a stage where the treatment is less intensive and you have more freedom again, you will in time feel you can get your life back in order. Right now its one day at a time, you have a lot going on with the treatment and on top of that you have a sense of loss for everything that was normal pre diagnosis. Be kind to yourself, go with the emotions but keep talking!
Please chat to your clinical nurse specialist (CNS) and see what support is available to you. We can also help navigate this and you are welcome to call us on 0808 208 0888. We are very happy to help.
Take good care,
Heidi J (Support Services Nurse)
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Thank you so much … I’m just terrified I use to be a runner before all this I’d run 5k everyday for nearky 2 years .so to be told I have cancer it makes no sence to me at all … I’m all over the place in my mind I just hope and pray I can beat it and go back to living a normal life again
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Thanks so much Erica … i just feel lost at tje moment and so worried about thr future i just hope and pray i can beat it
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Hi @Paulmufc I am sorry to hear that you are still feeling lost, you are part of our forum family and I hope that you will soon feel it.
Personally I think that it is completely natural to be so worried about now and the future and I hope that can take the pressure off you a bit.
So many of us have felt just the same as you.
So really look after yourself and be very kind to yourself and please do keep posting how you are doing.
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Thanks so much i really appreciate it
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ALL is a T Cell Lymphoma is it not? It’ll thus be rare as they all are.I have a different T Cell Lymphoma called Mycosis Fungoides which has successfully put me in hospital,well 9 different hospitals at various points!, where I am now having a Stem Cell Transplant.I have been on Methotrexate but it didn’t work plus Brentuximab and Flurarabine both of which I found to be very harsh.By a coincidence there was someone who had ALL in the other hospital I went to to receive the Brentuximab as a day patient but they never said what kind of chemotherapy they were receiving.
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Oh @Kevan7 wow, 9 hospitals is a good number of hospitals to have been in.
I would have thought that waiting for a stem cell transplant must be so hard, for me it would the unknown.
Look after yourself and keep asking your medical team your fears, questions and practicalities, oh, and keep posting
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Hi yes but mine is a b-all its mega rare … just my luck as lymphoblastic lymphoma is usually in t cells … thats why im so worried as i cant find anyone else my age who has had it … some kids have has at but i csnt find anyone older who has had it
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Well look on the plus side as B Cell Lymphoma is much better understood than T Cell and NK Cell ones so hopefully they will be better able to tackle it as they will know what has worked with other more common B Cell ones like Diffuse large B-cell lymphoma (DLBCL) and Follicular Lymphoma and maybe those protocols might work for yours.I think that the general consensus with the T Cell/NK Cell ones is they are not at the moment curable and mitigation of effects is the aim.With mine nothing worked other than temporarily but it’d be back within about 3 months at the most and as a rule of thumb it’d come back more aggressively.They though that my life expectancy would be somewhere between 2 to 5 years without a Stem Cell Transplant.
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9 hospitals connected to the Mycosis Fungoides but I have just worked out I’ve been a patient in 12 in my whole life as there are another 3 completely unconnected to the T Cell Lymphoma.The one I was born in,the one I had my Tonsils removed in and one I had a foreign object removed from my ear in.
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Hi @Kevan7 oh, I did laugh.
Yes, the hospital that I was born in, the one I had my tonsils out in, the the one I had my son in, my local hospital and 2 London hospitals so far, you win!!
Look after yourself
Hopefully as mine is B-ALL i am getting the same treatment as lymboblastic lukemina in ukall14 … i actully got a letter from hosipital today to go into the day ward on monday morning at 8.30am … so i rang up and the girl auctully said im starting my consolation phase one on monday as an outpatient… im shoked as my doctor only told me 2 weeks ago id be staying in for it…
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Oh @Paulmufc I think that must have been a bit of a shock and rather confusing for you.
Please do let us know how you get on.
I’ll be thinking about you, really look after yourself
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Thanks i sure will ill keep you posted after ny treament on monday
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Most Leukemia is B Cell from my reading about it but there is at least one T Cell kind.All Myeloma seems to be B Cell.Lymphoma seems to be the most diverse cell wise of the 3 with B,T and NK Cell ones but bearing in mind even that is mainly B Cell with over 91 percent B Cell.NK Cell is the rarest with a particularly nasty one called NK Nasal Type which is for some reason mainly found in the Far East and South America…very rare and nearly as deadly as Pancreatic Cancer.
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