Hairy cell leukaemia

HI.

I have just been diognosed with HCL, i woulf like to hear from people who are having or had treatment and how they are doing. I have not started any treatment yet as i have just got over having pneumonia and a collapsed lung.

Hi John, or is it Stanley!?

Welcome to our exclusive club. I have just had my treatment and am now trying to recover from a 'mystery fever, picked up whilst my immune system was down and 'rebooting'. I am writing this from my hospital bed.

Whilst there is some information on this site you will find the most active message board of fellow sufferers here:

http://www.network54.com/Forum/263810/

It is a site hosted in the US but there are plenty of Brits on there as well as some from New Zealand and Asia.

I have been writing a blog of my experience with HCL which you may find of interest that can be found here:

http://hairycell.blogspot.com/

Blogs from other 'sufferes' that I have been able to find are:

http://myhclexperience.blogspot.com/

http://jonshclblog.blogspot.com/

http://hcljournal.blogspot.com/

All of these guys are at various stages of treatment and recovery and are useful resources to see what lays ahead. I'm sure others will pop onto this board over the next few days to welcome you. The Macmillan site is very good for general advice and support, particularly if you are in the UK. It can offer guidance on getting local support and importantly how to apply for the free prescriptions you are now entitled to. Something neither my doctor nor consultant pointed out to me.

My email address can be found on my blog if you ever want to get in touch directly.

In the meantime do not worry about a delay in your treatment, it won't affect the outcome and its best to be as fit as you can be before it starts. Take care of yourself and whilst I'm sure you wish none of this was happening take comfort in the good prognosis that this disease has and the incredibly high success rate of the treatment.

Regards,

Richard.

Hi John, I'm Steve from Newcastle in NSW Australia. I was diagnosed with HCL in April 2009. I had gotten pretty low in so far as my health was concerned ie: low blood counts all round. My Doctor had already spoken with & arranged an appointment with a Haematologist at the Calvary Mater Hospital in Newcastle before she even spoke to me about the diagnosis. I had to have a blood transfusion pretty well straight away to keep me going, 2 bags at first which took 5 hours. I then had a bone marrow biopsy which is an aspiration & trephine where they take some marrow as well as some of the inside of the hip/pelvic bone. This confirmed the diagnosis. I have these procedures done under full sedation. I'm not a whimp however, why put yourself in any more pain if you don't have to. I then had various X/rays, scans & ultrasounds. My spleen was enlraged but not too bad. I then a PICC line inserted in my arm ( peripherally inserted central catherta ) in my right arm which was to allow for Chemo. , blood tests, blood transfusions & any other tests they wanted to run. Chemo. was given in the haematology day ward at the Calvary Mater ( it is a separate unit to the oncology section of the same hospital ) . This was given for 5 days straight which took a minimum of 2 hours to go though however, there were a couple of days I also required blood transfusions which increased the time by another 5 hours. To counter an nausea the cladrabine could create, they also give my anti-nausea drugs via the PICC line prior to each dose. I was pretty low & feeling completed exhausted on the 5th day which was a saturday & by the time I got home was starting to get a high temperature & was shaking uncontrolably. This kept up until the tuesday morning of the next week when my wife phoned the day ward & was advised to bring me in straight away. By the time we got to the Hospital ( 20 to 25 mins away ) I could hardly walk & was wheeled in in a wheel chair & admitted to the haematolgy ward where I stayed for 7 days with further blood transfusions & massive amounts of all types of antibiotics, both IV & oral. I ended up like a pin cushion because my right arm swelled up & they couldn't then use the PICC line, had to use the left arm for blood tests twice a day. Finally thought they had it under control & let me go home. Unfortunately, I was only home 1 day & my temperature went up again to 41 degrees. I was then admitted again only this time I had go in through " emergency ". Spent another 3 days in isolation before they let my home again. Had to keep taking Bactrim antibiotic for 6 months after. I have had countless blood test since & my haematologist actually has the Blood pathology (HAPS) also send my a copy of the results. Can 4 pages long. I had another B/M biopsy in December, 2009 which showed that some of Hairy Cells still have not died. He started me on a Tumour Vaccine " called Mathera. ( I believe it is used a lot in Lymphomas ). It was again given IV which took 5 hours each dose over 4 fridays. This is supposed to single out those remaining Hairy Cells & really tell them that they must die. I will have another B/M biopsy in May 2010 which will give an indication as to whether the Mabthera has had any effect. So I guess it is again wait & see now. You will note many different experiences from the various people who have commented in their blogs. I was off work for 8 months & only went back to work on 30/11/2009. At first it was 2 half days & now I can mange 2 full days & will soon get it up to 3 full days & go from there. One common thread is that you will always have to live with this Leukaemia & I guess the only advice I can give, is to simply keep going & live as much as you can. I have good days & bad days still & the other thing I seem to notice is just how tired HCL sufferers get, even when in remission or technical remission. Anyhow, it would be good to see how you go. PS: I won't write any more as this has been a bit long alreay however, for weeks after the chemo & antibiotics, my arms used to burn incredibly especially at night when I moved around in bed. I still have aches & pains in the finger bones, wrists & arm bones as well as sore tendons in my hands & arthristis in my finges.

Take care - Steve

Hi Wendy,

My name is Bruno o have been diagnosed with HCL this week.....i would like to have a chat.

Much Appreciated

Bruno

Hi Bruno,

I'm Steve, the guy who made comments on HCL directly above your request for a chat with Wendy, in this Forum. I don't know whether you read my comments or not however, it would be good to see how you go from here on in. It appears that each one of us is slightly different in various ways, but very similar. You really do have to put your trust in your Haemotologist. I did & he just kept reassuring me all the way through. It is daunting at first to be confronted with this " thing " you really don't know anything about, but you will learn quickly. The other thing to remember, is to always ask questions of the health professionals as they are treating you. The more knowledge you arm yourself with the better it will be. If you have any questions you would like me to comment on, I would only be too pleased to do so.

Regards & take care - Steve

Hi Dave,

Snap!  I too was diagnosed in 1992!  I was 36 and had just had a baby.  I had pentostatin 18 months later and had been in remission for 15 years.  I was told a year ago that it was starting to return, and 3 weeks ago I started a course of chladribine.  Like pentostatin once every 2 weeks, 6 doses.  So far, I've had 2 and had no side-effects.... fingers crossed. 

In 1992 there were only 5 people in the midlands who had hairy cell.  And of course internet was in its infant days.  My life has carried on as normal too, went on to have another child at 40.  Life goes on!

Helen

Hi Dave, Richard and Helen,

My husband john  finally had his chemo last week 5 x clardribin injections on his 6th day started to feel really tired, sick and low but no infection or fever, he went back yesterday  (day 8) all bloods are really low 0.02 neutrophils 0.04 WBC so very neutropenic keeping an eye on him at home and making sure we do not bring any  infections/germs home to him whixh is difficult when you  have an 19 month old grandson who loves his grandad to pieces and a daughter who is very heavily pregnant and just about to have another baby.

How long was it for you guys to start feeling better  again and for bloods to start going improving?

Helen what part of the midlands are you from? we are from Lincolnshire.

Judith - johns wife

For me I'd say it was about a two months. At the end of my 5 day Cladribine course my counts were pretty low and the following day I was Neutropenic and stayed that way for about a week. That was a Saturday and It wasn't until the next, next Monday that my counts started to raise. I was in hospital for the whole time.

I came out of hospital about 14 days after the end of my chemo but only for a few days before going back in with a fever although by now my counts were looking pretty good. That stay was another week or so. My Chemo started on Jan 4th, my last exit from hospital was Feb 15th and it was only then that I really felt 'better' and more ready to face the world. My daughter was born three days later and a week after that I returned to work.

I had a bit of a cold last week so felt quite tired again. This week, with cold cleared, is the first week where I can say I feel really well and back to myself. I'm able to get up early as I used to, go to work etc.

Bloods taken last week show that all is normal expect for my lymphocytes that are at about 70% their proper level.

I made a video blog of my cladribine treatment and first hospital stay if it is of interest...

http://www.youtube.com/watch?v=8Yd3uTVcVUY

Send my regards to John and wish him good luck from me.

Rich

Hi, just updating you on how john is doing.

He was admitted to hospital a week ago with a fever, rash and  constipation and looking rather yellow. They pumped him with line and giving him oral antibiotics as infection somwhere in body but not sure where said it could possibly be from the bacteria in the gut due to being constipated.

Constipation has been sorted, rash could possibly be a reaction to the antibiotic he started taking the same time as he had cladribin (3 weeks ago) All blood counts are very low and has already had 3 units of blood and possibly more tomorrow once the specialist look at results as all dr been away for easter holidays which is very inconvenient when your in hospital and ill and need treatment, we had the same thing at christmas when they shut down for the xmas holidays.

Today has been the first day that temperature is stable so hope the infection is under control, just need to sort out very low blood levels, rash and looking yellow, which is possibly because his liver not working properly.

(rich)Ive tried to look for your email address cannot find it.

Ive watched you tube found it very interesting, thankyou.

Hope your still doing well and enjoying father hood.

Judith - johns wife

Hi Judith,

My email address is richard at cranefield dot com.

Best wishes to John, I hope the infection is easing. My antibiotics have given me very dry skin and a slight rash on my forehead, The Body Shop are doing well out of it as I'm getting through tonnes of moisturiser.

The transfusion should make John feel better for the short term. I had three units when I was inside with a fever and it puts a bit of colour back in your cheeks. The white levels will slowly come back but it takes time. In the meantime sleeping and eating were the best ways I found to pass the time.

Regards,

Rich