Hairy cell leukaemia

Hi Frank. Sorry the op was postponed. Especially getting into hospital. But good the surgeon was sensible! Third time's a charm.

I'm not back until August. The next day we fly abroad so whatever my blood is, I'll have a tan! Or freckles. 

Have a nice weekend

Hello Makaky

Sorry his neutrophils have dropped. That will be worrying for you both. 

They must measure mine in a different way. At best mine have been 7 and presently are 4.5. We worry at 2 and treat at 0. They measure to one decimal place but it's never above double figs. But the platlets are in treble figures.

What, I was always told was its the absolute number not the trajectory which counts. Don't get me wrong watching it drop isn't fun for you ang your clinicians will watch dips closely. They can go up and down. This used to frustrate me as they only ever seemed to yo down. BT now they are up down and sideways. My advice is watch the absolute figure and as best you can live life between tests, not live for the next test. Now this is easier said than done, I suggest you plan this time. Make it fun and full to live for today and not the next tests.

Be prepared they'll wait until he absolutely needs treatment. I understand knowing if you are having treatment feels better as the quicker it starts you can get it over with. But i let it take over me and I hope I've learned my lesson it's not healthy.

Enjoy these next few days together and fingers crossed for Thursday. Keep us posted!

thank you Wendy,

it's true I wish we could get it over with, this constant uneven drop is dragging it out for what seems like forever.  But I know we have to wait for treatment to be necessary before we start.  at least this time we know what is going on.  

I guess we do measure differently, our numbers get treated at five hundred and I do t know what percentage method the doctor's use to measure.  last time we avoided the hospital and were able to do the chemo purse at home so I am hoping for that again, I would hate to have him in the hospital for at least a week so my fingers are crossed!  thank you for the kind wishes.

Hi Wendy, I’m picking up on an old thread of yours as I’ve been trawling through reading everyone’s experiences. I hope you’re currently well and doing well? I was diagnosed in June 2017, in remission since Nov 2017. I tried to adopt last year but was turned down as not having been cancer free for 5yrs. Of course, with HCL we will never be technically free! So I wondered how you got over that hurdle? Hope you don’t mind me asking. Carina 

Hello Carina

Congratulations on getting through your diagnosis and treatment. If you can do that, you can adopt.

I am assuming you are in the UK. I called several adoption agencies both private and council based. The range of positions on cancer was vast and when negative was founded on little understanding and downright ignorance. Cancer isn’t the death sentence it used to be. HCL is especially helpful as the one we have been given, as it’s not degrading in that you get back to square one, it has lots of treatment options and the survival rates are positive.

My advice is speak to as many agencies as possible. But do this only when you feel fully educated and when you have your consultant and GP on side. My consultant wrote an open letter to agencies which I could share. I took leaflets with me. I told my story. Then the panel gp spoke to the consultant and I asked for a personal interview rather than them just reading my notes.  Remember these are not cancer specialists you are talking with. They don’t understand. One panel member asked me about how a child might cope when I lost my hair from chemo and after looking puzzled I told them you don’t always lose hair with all chemos and shall I explain what HCL is? It turned out her mother had breast cancer and she personally struggled as she saw her mum lose her hair and decline. So bear in mind 1 in 3 are affected by cancer whether a patient, friend or family member so they all have perceptions based on what they know and at the root  of it is fear.

My second piece of advice is run for the hills from the idiots. Those who don’t want to understand will never understand and you have choices. I had one plank tell me that what I needed to understand was that when I die it would devastate the child. So I asked them what they knew that my consultant didn’t. How did they know I was going to die. You are already facing your own mortality you don’t need an idiot to berate you. So when you meet your own plank, remember they are planks, not corrrect.

So my last piece of advice is do not give up. As I said at the start of you can get through what you have, you can do this. If you want a child you will have one. Of course they can all be little devils but my goodness it’ll be worth it!

Good luck!

Hi All, I was diagnosed with HCL in May 18 and started on cladribine in June 18. A week of cladribine seemed a walk in the park compared to the following filgrastim injections that i can only describe as hurting from deep within my bones.
I did end up in a hospital isolation ward due to a blood infection. But I will say I felt safe with the Macmillan Nurses in the ward I was in they were so lovely and made me feel safe.
I was back in Hospital though after a couple of days with a bad allergic reaction, they arent sure if its the cladribine or antibiotics that caused it. That was the first time i cried, it hurt so much, but the Nurses were so good in getting me back to normal. I looked like a bright red Michelin man :)
Ive now had 3 bone marrow biopsies and after 2 im demanding sedation christ they can hurt. My consultant said student volunteer for them at £50 a go ..... Nutters !!!
After my first chemo i was down from 99%  to 0.0007% back up to 0.5 after a couple of months so im about to go for my next cycle which will be an antibody infusion. Soo looking forwards to several weeks of 8 hour infusions.

I hope all of you with HCL have a good journey.

Hi,

Reading your message I can almost feel your pain - you've certainly had a tough time over the last year.

Me? I'm a HCL old-timer, diagnosed way back in 2003 when I had a course of cladribine drips, a 4-hour infusion once a week for 6 weeks, and since then, as if miraculously, I've been in remission, so been on 'watch-and-wait' since then. 

My consultant says I'm almost borderline for the modern cladribine jabs, one a day for a week, but not yet.. and I've heard a few stories of patients having severe reactions and infections and ending up in hospital like you did. But my guy says no worries, so who do you believe?

All I can say is keep your spirits up, and hit you with that old chestnut - there is light at the end of the tunnel - trouble is, sometimes it can be a long tunnel!

Where are you from, by the way?  I'm over in the north-west of England.

Regards, Frank

Hello everyone,

I know reading all the posts could be challenging at times.

So before I tell you about our situation, here are the things I would like to learn.

1) Has anyone went through Cladribine with immediate rituximab combination?

I would like to know how it was. Side effects, how long you needed to be off sick, not being able to be on holiday etc.

2) what is your experience in work? How does/did your employer assess your situation and what kind of support was given to you?

We just don't know what we can ask from the employer.

3) Is there anyone who's memory is affected? 

My husband's has gone worse.... It does not play out hugely in daily life but there are small things that peppers our life as well as his work life. Mixing up months, not remembering names, not doing the right math etc. I'm just wondering if/how low red cells in the body affect the brain (as well as the body) or not over stretch of time.

Ok. About my situation. 

In Oct 2018 my husband (M) was diagnosed with HCL - he was easily winded but just thought he was unfit at age 58. I was however concerned about M having a cancer as his parents and siblings had/has cancer and he also had some abdominal pain which was not going away. M asked for a blood test after some strong push from me in the end and that's how he found out about it. Interestingly, he was told he has no inherited cancer genes in this process. He has no enlarged spleen. 

He did Cladribine for 5 days like many of you a year ago then. 
M had some complications with infection after 1 month of Cladribine and was hospitalised for a week. But since then, he has been sloooowly but steadily getting stronger. He gets tired easier than before and as his quality of sleep has gone done for some reason, often needing to sleep in.

We made a spread sheet to follow each key blood markers since this and noticed that most of the markers weren't recovering into the "normal" range after 10months. So it was not a surprise to find out last month that his situation is not in remission. Also infections (minor cold, throat infection) tends to knock him back in the last few months. So I had a sense there was something up with his case.

But he is less breathless compared to a year ago when he was diagnosed.

He went to an HCL conference at the Royal Marsden Hospital in Sep 2019 and found it very informative. And this is where M heard about a treatment of Cladribine with rituximab that that might have been helpful for his case.

And now his consultant OKed that he will go on Cladribine with immediate rituximab next month.

I would like to know if any of you had this combination and how it was for you.

We have a 7 year old boy. We have not told him about his dad and HCL yet but he recently said "Why is dad always sick?". I thought this was interesting. It is something we need to talk to our son about soon.

Thanks for reading (if you have reached to this point :-)

Wishing you all the best to everyone and hopeful to hear from some.

Warmly,

Mia

Hello Mia

So sorry to hear what you and your husband are going through. I hope I can help.

I have had cladribine and rituxamab together. I first had treatment in 2006, then problems arose in 2010 again. Then again in 2011. It was in 2011 I had rituxamab. I’ve been well since. I am classed as complete remission so no sign of hcl but no guarantees. So for me a success and worth it.

For me it was worth it. Bearing in mind I was hospitalised all 3 times, I was admitted for less time on rituxamab. The treatment days were long as they kept upping the dose so it’s delivered only as quickly as my body could take it. On one occasion it was a bit concerning as I feel unwell quickly but they stopped it immediately, so be prepared to be monitored closely. More than the chemo checks! I had a rough time the first two times but I definitely did not feel worse with rituxamab. Everyone’s recovery is personal, but I was off work for a couple of months after. Holidays were after treatment and when I could be bothered! Insurance companies are expensive, as you need to declare. 

i left my first employer after my first diagnosis. They were not supportive. My employer in my last 2 treatments were brilliant. Speak to them and ask what support they can offer. Your husband will be signed off sick so find out about sick leave entitlement. For return ask about a occupational health review so a medical review can suggest what might be helpful eg a phased return and light duties. You might want to ask about a flexible working request if you want to reduce hours after returning. There are lots of things, but each employer has different experience in cancer so my advice is to speak to them. But think about what you need first. I am sure Macmillan will have things about employment have a peek on the website. Cancer and work is a big topic.

Memory? What memory!? Absolutely! Exhaustion, worry and stress will affect it. However chemo brain is definitely a thing. Personally my memory isn’t what it used to be, but much better after I recovered. So I suspect it’ll improve when he is feeling better.

You are best to judge what your child can handle. Macmillan have a great leaflet which might help when you are ready.

take care and good luck 

wendy X