Hi Everyone,
I was recently diagnosed with Hairy Cell leukemia in my blood and Chronic Lymphocytic Leukemia was also found in my bone marrow biopsy. I have just completed treatment with subcutaneous Cladribine injections, so am now in my extremely vulnerable phase.
I know the HCL is rare, and I’m guessing both together is rarer still.
To that end i have created a Facebook Blog of my journey at the link below and would welcome anyone else’s experience with this form of blood cancer.
Hi @AndyT a great big welcome to our forum and I hope others can help you.
I find our forum is very supportive no matter what blood cancer we have, but obviously it is great to connect with others with exactly the same diagnosis.
As you are recently diagnosed I expect you might still be in shock, I know I was for a long time. Be kind to yourself.
Do you have support from family and friends?
The Blood Cancer UK support line is also there for you.
I look forward to hearing more about you.
Look after yourself,
Hi Andy T and welcome to the forum. My husband is going through a different leukaemia. I watched your facebook link and was really touched by it. This kind of diagnosis is totally mind blowing and you are really at quite a tough stage of your treatment. I remember being terrified for my husband when his platelets were zero too but you will get through it day by day and as the count rises you will feel more confident. The support from this group is amazing and they helped me immensely when husband got diagnosis at end of December. We had a really bumpy road and the support on here was fantastic. Keep posting when you can. It helps to do a ‘mind dump’ as a friend, who is a counsellor said to me once!!
Hi everyone i have HCL. i had 4 applications of cladribine. I am waiting for the results of the bone marrow bioption.
I found such studies and links that may help someone one day:
https://rarediseases.info.nih.gov/diseases/6560/hairy-cell-leukemia
A great big welcome @Krzysztof I am glad that you have joined us and I look forward to hearing more about you.
Please let us know about your bone marrow biopsy results when you get them.
Look after yourself
hello, thank you for the kind words, Erica you are a real support in this forum.
I had 4 cladribine applications because on day 4 I had febrile neutropenia. My 5th application was canceled. At discharge from hospital, I had 0.5 neutrocytes, a week later 1.2, and suddenly 6 weeks after treatment, my neutrocytes dropped to 0.12. The doctors decided that they needed to test the effect of cladribine and had my bone marrow taken for testing.
I have such confusion in my head right now. I like to know what’s going on and have some control, and in this case there are so many possibilities and unknowns that it’s overwhelming. I will write in my free time what it looked like more precisely, maybe one day it will help someone.
Dear @AndyT, thanks so much for posting and for sharing your Facebook blog, I am sure this will really benefit others in the community. Can I ask how you are at the moment? Do you need any information or support? If you do please do not hesitate to contact us here How to contact Blood Cancer UK | Blood Cancer UK Kind regards Gemma
Hi Gemma, sadly not well at all. Was admitted to hospital Monday evening. Was only 3 days post Chemo. Temp keeps spiking at 39.2.
Unfortunately due to no oncology beds available when i rang the emergency line i had to be admitted via A&E.
I spent 7 hours amongst some of the sickest people i have seen, Covid ,D&V etc.
Now settled in an Oncology ward. Hope tonight is better. Was seriously scared last night.
Hooe the blog can be of benefit to others. I just plan to tell of my journey exactly how it is.
Andy
Dear @AndyT, I am very sorry to hear you have been so poorly post your chemotherapy. It is ceratinly a challenging time when waiting for a bed via A and E. I do hope that you are more settled tonight and that your temperature normalises. Do take care and we are here if you need us. Take care Gemma
Hi @AndyT So sorry to hear you are so unwell and had to go into hospital through the scary route of A&E.
Our diagnosis leads to scary times, @Krzysztof being out of control, waiting others, not knowing and that plays havoc with our emotions and thoughts, yes, it does feel overwhelming.
@AndyT thinking of you loads and hope you feel slightly more settled now.
Look after yourselves both of you, we on our forum are here for you and so is the Blood Cancer UK support line.
Keep posting both of you.
Hi, i think i have come to terms for now, but i keep putting the fact aside that this is incurable and will come back at some point.
I think mentally if you’ve had a bad experience with first treatment, the thought of having to go through it all again can be quite Traumatic.
Still as i keep telling myself i survived 4 different wars when thousands didn’t and if i can do that then this should be easy. But i can honestly say this is harder mentally and emotionally
Andy
Hi @AndyT, no, it is not easy,
Mentally and emotionally it can really take it’s roll, you know the logic, but it is not logical or fair…
The good news is it has made me assess my life and actually nobody knows what the future holds, but given time (18yrs) I now really try to do what I want with who I want to.
Give yourself time and be kind to yourself.
Hi Andy T, Thank you for sharing your diagnosis. Welcome to the rather exclusive HCL club! I also have HCL - on its own, so not with the added complication of Chronic lymphocytic leukaemia (CLL). I can relate to your experience of being admitted via A&E when no haematology beds were available. (Although I am a man, I was found a bed on a female surgical ward.) From experience, a spell in hospital is to be expected following Chemo. I have now had two rounds of Chemo (Cladribine in 2012, and Rituximab & Cladribine in 2018) and spent about a week in hospital shortly after each round. I apologise that I will not be following your blog (nothing personal - I just don’t use Facebook), but hope your medical care is as good as mine is and has been. Mike53
Hi, @AndyT,
thanks very much for sharing your experience, and also for getting a conversation going on HCL. Really sorry to hear of your bad luck in being hit by two leukaemias at once – I really hope things start getting better for you.
Here’s my experience of HCL, in case it’s of use to others.
I had a first round of five daily cladribine injections in June 2020. 10 days later, my temperature began rising above 38°. Acting on the advice given at the end of the treatment, I went straight to A&E, was diagnosed with neutropenic fever, and was on antibiotic intravenous drip feed within 30 minutes of arrival. It was all very calm, efficient and reassuring. It was followed by five days in an isolation ward continuing the treatment. After which my neutrophil counts recovered very quickly, and I was soon back to normal.
Six months later my overall blood counts were also back to normal, except lymphocytes, at 600 - a consequence, as I understand it, of the cladribine, not the HCL. On the HCL, a bone marrow biopsy showed a residue of 10 – 20% left. So, that meant a second round of treatment in June 2021, this time five days of cladribine, + 8 weekly treatments with rituximab. It went very well, minimal discomfort. No neutropenic fever.
The most recent bone marrow biopsy shows residual HCL down to less than 3%, so no further treatment recommended. But lymphocytes below 600. A T-cell subset analysis shows CD4 count of 180 and CD8 count of 120.
I’ve been very fortunate with the HCL. But my lymphocyte count has remained low throughout the period, so I take regular doses of antibiotics and antivirals. The consultant has not been able to give any clear indication of how long recovery of lymphocyte levels will take, or indeed whether they will recover. And it seems there is no action that can be taken to aid recovery.
This of course leaves the question of covid. My partner and I remain in “lockdown”, as there seems to be no clear information on how far the current vaccines provide protection for people with my form of immunosuppression.
Finally, a quick word of thanks to Blood Cancer UK, who are doing so much for our community.
Hi,
Thanks for getting in touch and it’s good read a different perspective.
I’m sorry your journey hasn’t been has straight forward as most of the journeys i read about.
So many people saying that after 1 dose of Clad, they have been clear for 10/20 years etc. These outcomes are what we would all love to achive, but sadly i am learning more and more this isn’t the case.
I finished clad on Fri 25th March and was in hospital just over 3 days later. I had 3 days of fevers which subsided, but started again yesterday only briefly, but are back again today.
All blood cultures and other cultures have so far tested negative for growth.
I’m guessing neutropenic fever, but its being persistent if it is.
Covid worries me no end, i have 3 children at school and it is running rife amongst them. Only today my youngest sons best friend tested positive for a second time.
When i eventully get home i feel i will be running a Gauntlett everyday they go to school and come home.
Dont really have the luxury of isolation from the family at home. So on all honesty everyday i have in hospital isolation is fine by me.
Hi @nwarner a great big welcome to our forum and thanks so much for sharing your story, I am sure that you will have helped so many others.
Please keep posting how you are doing in Covid lockdown, there are many others in the same dilemma and situation as you.
Look after yourselves
Hi @AndyT Yes, it must be a fear and dilemma for you and actually yes, hospital isolation must feel the safest option currently.
It must be so difficult with children who deserve their normality, although they also need to know about your medical condition and your needs, a complete dilemma.
You also make the point so well that it is so often not practical for you to isolate in your home, space and facilities wise.
Please let us know how you get on and look after yourself
Hi @Erica ,
It is frustrating, but the kids understand . My two boys are Autistic, so that can add to the stress.
Still, on the bright side, I’ve just learnt my neutrophils have risen from 0.0 to 0.4 in a week post finishing Cladribine. They were lower than that before I started treatment, so that’s a definite positive.
Andy
Thats great news Andy that neutrophils have risen to 0.4 so you are heading in the right direction. The hospital let my husband home when his were at 0.8…I understand what you are saying with the covid situation with having school age kids. (We are in Scotland and they were all set up to put in air filters in the schools to stop the spread but they cancelled it all at the last minute! Madness) So, staying in hospital is the safest option for you at the moment, although you will be missing them …maybe you need a man shed in your garden to isolate in lol… onwards and upwards.