Terminal diagnosis of Peripheral T Cell Lymphoma, how to cope

@Willow, @Nichola75 says it so well it really is a privilege to read your poems, you say what I feel in some way and so much more articulately than I could.
Look after yourself.

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Hi sandy … just wondering how you are doing. My mum is in a very similar situation x

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Hi @Jordan1990 thanks so much for posting on our forum.
I would like to hear more about you and your mum and also how you and your mum are feeling and doing.
Look after yourselves.

Hi. I was given a terminal diagnosis a year ago last week. I’ve had loads of ups and downs coming to terms with this. I have been keeping active and tried to stay positive over the past 12 months, I’ve also had 2 growths zapped with radiotherapy which I think have helped keep me alive, although side effects from these treatments were pretty traumatic at the time. In a way I am probably embarrassed about still being alive, the Consultant gave me only a few weeks (maybe months if I was lucky) on this earth. Of course I had to inform all those close to me of the diagnosis so that they wouldn’t be too shocked when I popped my clogs. I gave most of my stuff to charity shops in the first couple of months, sold my property (that I rented to boost my income so have lost out on rental income). Been really awful to my husband with my awful moodiness, not seen friends as they find it really hard to talk to me. Spent every night awake wondering if tomorrow would be my last day… however, I am here, alive and kicking and I think I have now accepted that every day is a bonus. I hate the winter months and have always struggled with grey miserable skies. However, I have friends that are worse off than me (comes with our age I guess). I don’t know whether I agree with Consultants telling their patients worst scenarios. Too many life changing decisions get made whilst your brain is in total turmoil. I have not written on Blood Cancer UK for a long time as I feel as though I am just so ungrateful for the time I have had. Life is still blood tests, scans and hospital appointments… I sometimes think we should be just given some steroids, antibiotics and paracetamol and be allowed to administer same when we feel the need for them, I know my body as I’ve lived in it for 73 years, and I know if something isn’t quite right. This “watch and wait” or “wait and watch” does my head in. The prognosis for PTCL NOS is 3-5 months, there are numerous cancers within this group and there is no individual prognosis for each cancer type. So no outcome is the same (as in my case).

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Hi Erica. Mum was diagnosed in march last year with ptcl nos . She went straight onto a clinical trial as standard chemo doesnt have great outcomes. After 4 cycles there was no evidence of cancer. But after her pet scan after her 6th cycle it was already back ( although they made us wait 3 months and redo petscan until they confirmed it ).
She was put on salvage chemo straight away in hope of remission to move on to allo transplant .
She had her pet scan yesterday after 2 cycles of chemo… we know it hasnt gone yet and depending on how much it has redcued she may have one more cycle. If not she will be moved onto palliative care or one of 2 trials of she fits the criteria .we dont have much hope as weve found another lump today… so things arent looking good .
We both arent dealing with it very well… shes so scared and im so scared of losing her. I just want it all to stop so i can enjoy time with her.

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Thank you for your reply sandy . Its such a horrible cancer … it has been such a rollercoaster for us . Mums not quite at a terminal diagnosis yet … but we dont have much hope yet and feel its around the corner .
Do you mind me asking what hospital your treated by .
Your comment radiotherapy is interesting , i have noted that down , but i think mum has lymphoma in too many places for that to be an option.
Im surprised you still frequently have to visit the hospital as the impression i got from mums consultant was if this chemo doesn’t work and she cant get on a trial they send us packing with palliative care.
Im very comforted by your reply and im glad your still around and enjoying life by the day x

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Oh @Sandy2 thanks so much for your very honest, moving post saying just how it has been for you.
I believe I remember your posts originally.
I believe (and great apologies if I am incorrect) I remember you had cleared out so many clothes, which you donated to the charity shop, that when the weather warmed up you had nothing to wear.
People often want to know about prognosis on here and you have clearly shown their unreliability.
Google said my prognosis was 5-10 yrs and that was 19 yrs ago and I am also 73 yrs old and making the most of each day, it certainly did make me make re-assess and life changes and decide what I wanted to do and with whom.
Please do keep posting as I love your turn of phrase and outlook and really look after yourself

It sounds very natural that you are both scared and not dealing with it very well @Jordan1990.
We and the Blood Cancer UK support line on 0808 2080 888 are there for you
All we all have is today to make the most of, perhaps doing nice things and spoiling ourselves.
Be ever so kind to yourselves you are probably exhausted.

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Hi @Sandy2, thank you so much for taking the time to share this. It sounds as thought it’s been an understandably difficult time for you and I can imagine the date of ‘one year on’ must bring up all sorts of feelings. All of these feelings are valid and are understandable. We appreciate your honesty here and you’re always welcome to share how you’re feeling. Would you like to speak with our Support Team? You’re very welcome to call us on 0808 2080 888 if so. Sometimes it can be hard to talk things through with our friends and family when we are going through something so incredibly difficult, and an impartial ear can be helpful. We’d also be happy to talk you through other support services that may be available to you, if that’d be useful at all?

We are thinking of you.

Best wishes,
Tanya.

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Hi @Jordan1990, thank you for your posts. I can really hear from your words how tough this has been for you and of course just how much you love and are there for your mum. I can imagine it’s difficult for both of you to know how to deal with this and it’s natural to be scared at such a time. Apologies if I missed this, but may I ask if your mum has a Clinical Nurse Specialist that you /her feel you can speak to?

Our support line is here and open to you if you’d like to talk things over or just need someone to listen to you (0808 2080 888).

Best wishes,
Tanya.

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Hi Jordan. I suppose I’m under two hospitals (Devon & Exeter for oncology) and North Devon (my most local for haematology). I was diagnosed by Devon & Exeter as I had an enormous tonsil develop in my throat which was blocking my airway and voice box (even though I’d had them out when I was a toddler) so the oncology team did the business of biopsies and diagnosis in the first instance. At that time I didn’t want radiotherapy, so they passed me over to the North Devon team for me to have Chemo (chops x 6). After my pet scan they informed me chemo hadn’t worked and suggested I had radiotherapy because a large lymph node had appeared in my neck and base of tongue. The tonsil had by then disappeared. Radiotherapy got rid of the neck & tongue nodes. Then I went to Oxford to see if I would be a candidate for a trial - typical that their pet-scan showed I was clear of lymph nodes apart from one hidden somewhere in my lung department, which wasn’t good enough for the trial. Low and behold 2 weeks later another one turned up, in the base of my neck/throat this time and which was starting to interfere with the swallowing of food and drinks. Back to Exeter for another biopsy, this again turned out to be dodgy so they said they’d give me another palliative dose of radiotherapy. This was in November last - touch wood ok at the moment although feel there is something weird going on in the tummy dept. Have blood test next week and Consultant appointment at North Devon on Valentine’s Day ! I would say that my husband has really “kicked up” as I too felt as though I had been left for dead a few months ago, with just my lovely hospice nurse checking in on me every couple of weeks and a Consultant appointment booked at 3 month intervals. After letters to describe our feeling of discontent to appropriate NHS departments, things have improved. It’s so awful to have to fight for yourself when you feel you have just become a number in the system. Bad enough having to live with this dreadful disease, especially if you can’t see any light at the end of the tunnel, I really feel for you both. Fingers crossed mum gets the ok for next stage of her treatment and try not to wish your lives away whilst waiting for it to happen as every day is a blessing. x

Thank you for your very in depth reply sandy … its nice to speak to someone here in the uk who is in the same ‘club’ as us. My mum is treated under uclh in London ( which ia one of the top t cell lymphoma hospital’s) but we dont have a great relationship with her consultant. Although shes one of the top , we dont like the way she tells us things and shuts us down ( her nurse is lovely though ).
Mum was diagnosed march 2022… but was having symptoms from January 2021. Her gps were just throwig medications at her and not actually trying to diagnose what she had . Until one lovely gp referred her straight away.
Her lymphoma started as a stuffy blocked nose , a lump then appeared on the side of her nose. After months some more lumps started to appear around her eye and what got her a hospital referall was a pus filled abcess where her tonsil would have been .
Mum initially went on a trial as her lymphoma was cd30 positive and the trial waseant to give better outcomes than chop. After 4 cycles there was no evidence of disease ( we were over the moon). But by the end of treatment pet scan it had appeared down in her ankle in her tibia . The hospital made us wait 3 months to do another petscan hoping whatever it was had dissappeared . It hadnt … mum now had lymphoma in her bone , muscle, under the skin , liver , probable gastric and possibly lungs ( but this could be covid )
They immediately started her on salvage chemo … 2 cycles and re do pet scan which was on Wednesday. We get the results on monday and there are a few different outcomes depending on the results… if it has reduced the lymphoma enough to their liking they will do one more cycle of salvage chemo and go into an allo transplant ( this would be the case if she is in remission again ) . If the cancer is progressing they have mentioned the oxford trial … and if she doesnt fit the criteria it will be palliative care .
We did find a new lump yesterday … so things arent looking great . Mums mental health is not great atm ( neither is mine , but ive been holding myself together somehow) .
Ive put my big girl pants on and am ready to put up a fight monday . Shes still so fit snd well and really wants to fight this horrible cancer.
Once again thank you for your reply ,its very comforting to speak to someone with the same type of cancer ( the only people i have spoken to are people in the US and over there they have so many more treatment options than we do )
I hope you have a nice weekend sandy x

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Hi @Jordan1990 I just wondered how you are both doing?
Look after yourselves

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I was thinking about Jordan & her mum too, I do hope they’re doing ok.

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Hi Jordan, am hoping no news is good news but how are you both doing x

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I hope that you are doing alright.I know about PCTL NOS as I have the most common of these T Cell Lymphomas called Mycosis Fungoides.I have just had a huge tumour come on my shoulder because of it and received radiation for it but as always happens the tumour semi collapsed and became infected.The hospital are on about using Brentuximab and later a Stem Cell transplant to try to halt it’s relentless progress but nothing else has worked in the past.I think that PCTL NOS is the second most common T Cell Lymphoma after Mycosis Fungoides but they are all pretty rare.

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Oh @Kevan7 you have had a lot going on how are you doing emotionally?
Look after yourself and please do keep posting

Mentally I am ok but am rather worried about the rate it’s progressing.The hospital will call me in about an Stem Cell transplant in the coming month or so and I will find out more but as I understand it a sister or brother is better for finding a match followed by a cousin, nephew or niece.It doesn’t mention parents,aunts, uncles or grandparents but that probably as it would be too dangerous to their health as they are going to be significantly older than the person receiving the transplant.

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Hi @Kevan7 It’s slightly different but I felt on this out of control rollercoaster I could not get off.
Hang on tight and perhaps keep writing all your fears, questions and practicalities down to ask your medical team.
Be kind to yourself and take care and please do keep posting