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HCL Mailbag
Visit the HCL Mailbag to submit a question to be answered by an expert in Hairy Cell Leukemia, or to read other questions that have been answered by an HCL expert. Your question(s) will be answered as soon as possible via email, and could be used to be part of the next HCL Mailbag!
Meet the Message board members
My name is Jeff and I am the webmaster for HairyCell.org. We encourage people to introduce themselves here (please note: we will never ask for personal information in this forum) and share what you would like with the community to contribute to the discussion. If you have questions or concerns about the web site from a technical standpoint, please email me at info@HairyCell.org, or if you have questions regarding Hairy Cell Leukemia, please submit a question to the HCL Mailbag.
I will start by introducing myself to get the ball rolling. I am 30 years old, have been working with the HCL Consortium since the summer of 2009, and I manage the HCL web site. I do not have HCL, but I am learning more and more about it every day, and I am pleased to be a small part of helping provide information to people who need it and a way for people affected by HCL to connect with the experts associated with the HCL Consortium.
Now it's your turn!
Happy New Year!
I wish you all good health and strong nerves, successful remission and never relapsing! Take care!
Hello
First off, I wish I had found this site back when I first found out I had cancer. I was diagnosed in December 2009 only after a series of infections and illnesses and a funky skin condition (erythema nodosum) that someone finally noticed my cells looked "weird". I was referred to my Oncologist who ran a bunch of tests and a bone marrow biopsy. Within a week I was getting a port put in and started chemo (Cladrabine) right away. Because of my work I chose to have one treatment per week for six weeks. I really didn't have any significant side effects from the chemo itself, so I was happy about that. On the other hand I did manage to acuire histo plasmosis somewhere along the line which resulted in mostly daily IV fluids and and several hospitalizations due to not having any type of immune system.
In August 2010 my HCL counts were low enough to qualify for being in remission. I still see my oncologist every six months and my numbers have been mostly stable (except my platelet count - which has been all over the place). I am still tired a lot and have not ever gotten back to my previous energy levels, but I am thankful to be alive.
HCL Diagnosis
Hello - Posting for the first time. I'm a 34YO mother of 2, step-mother of 3. I was diagnosed with HCL back in February of this year, and my diagnosis confirmed at Moffitt Cancer Center in Tampa after a bone marrow tap in March.
Initially Moffitt told me that I wouldn't need treatment, for as long as 5 weeks, 5 months, 5 years or even 15 years. Everyone is different. They scheduled me a 6 month follow-up and asked me to have my blood monitored monthly until then. I went last week for my 6 month follow-up and my levels have all gotten worse since my initial visits. Specifically, my hemoglobin has dropped below 10 and my platelets below 50,000. But all of my blood levels are trending negatively over the last six months. So treatment is in my near future.
This is frutrating for me as I wanted to proceed with treatment right away, as did my local hematologist, but bc the specialists recommended we wait, I did. And now, I'm worse for the wear and starting off feeling much worse then I did six months ago. I've lost all energy and feel, for lack of a better way to describe it, like I've got a cold coming on...all of the time.
I'm hoping that my treatment does not leave me hospitalized. My kids are young and I don't want them to have to deal with that. I'm hoping that I can have a port installed and have success with a Claderbine treatment course over 7-10 days and be feeling better on the other side. The doctors at Moffitt, to this point, have been relatively insistent that I didn't need treatment until my levels got to a point that they would admit me to their hospital...three hours away from my home.
I have an appointment with my local doctor to discuss my local treatment options this Thursday. It's very frustrating to have doctors that are not exactly on the same playing field...but in this case it may be helpful in that I can go ahead with my treatment and hopefully be feeling like myself by the holidays!
Hang in. The Claberdine
Hang in. The Claberdine stuff works. Just will lower your white blood cell count for about a month when you'll need to be super careful about germs. If you're gonna get cancer - hairy cell is the one to get - the Claberdine (however its spelled) works.
Been seven months for me, feeling great, blood is great, doc says I'm in remission. Had a follow up bone marrow biopsy last week to doublecheck.
That's great news...and what
That's great news...and what I've heard and what I'm hoping for. Since I've been so tired lately as my hemoglobin and platelet levels come crashing down, I'm hoping to get treatment, feel worse for a month or two, and then feel better on the other side! We'll see what they say Thursday. Thanks for your encouraging words.
Hiya
Hi there Floridamom.
Sorry to hear you are having a rough time. From what I understand the levels have to be a certain level before they will do the chemo - I may be wrong. But it Understand it can be frustrating. Re the Picc line. You may have other options depending what your treatment is... My experience was a weeks worth of treatment, directly into the subcutaneous layer of skin in my stomach. (three needles of the chemo a day direct into my tum). It was pretty trouble free and that part of it was easy - save for a bit of bruising. So this meant I didn't have the port line fitted dropping the risk of infection. (however I did end up in hospital with fevers for 2 weeks).
I wish you lots of luck with your treatment, mine was in April and I've been back to work since June. (it was also cladribine)
Re your conflicting docs - there are some centres of excellence for the treatment of our illness, quite a few in the states (not many in the uk). Might be a good idea to investigate these? Here's a link to the info from this hairy cellorg website ...
http://www.hairycell.org/content/patients/centers-excellence
Good luck with everything, keep explaining to the kids they are quite resilient but explain to them. Try asking the docs about the injection option - could be done at home too maybe ifyou have the correct healthcare services where you are?
All the best
Suzie
I've not heard of that
I've not heard of that treatment directly into your stomach...anywhere. That's intriguing though! And something I may mention on Thursday at my appointment.
Initially, the local doctor wanted to treat right away. My initial platelet levels at my diagnosis were in the 70000 range. The doctors at the cancer center they referred me to (Moffit...which is also a renounded cancer treatment facility) wanted to wait until my platelets got in the 40000 range, which would almost certainly require hospital admission. But my hemoglobin levels tanking threw them both for a loop and now we've got to look at things more quickly. It just would have been better for my schedule (is there really ever a good time?) to have done it this past summer when my kids were with their father for the summer.
I've not explained in full detail just yet. Once I know for sure what and when my treatment will be, I'll have more of a talk with them. Their father (also 34YO) has had 4 heart attackes since we split almost 4 years ago, and he almost died on the table during the last one. So I don't want them to think they have two sick parents...especially since this seems to be something that doesn't really affect your life expectancy from what I've read.
Thanks for your encouraging words!
(PS - I'm also Suzy...just spelled a little different)
Reply to Florida Mom
Hello, I hope it helped a little to write down your feelings of frustration! Try not to be too hard on the doctors though - the advice not to treat until it proves necessary is normal and 'correct' for most patients, based on the evidence. We're really lucky to have such good chemo available to treat our HCL, but remember that all chemo carries the risk of side effects (even a greater likelihood of other cancers) so it makes sense to be cautious.
Hope it goes well for you! John (writing from Spain)
Thanks for your reply. I've
Thanks for your reply. I've talked to so many people, but since this is such a rare disease, it is hard to know what's the "right" course of treatment. So when their opinions differ, it makes it even harder to know. But again, with the rarety of the disease, who knows what is "best". Just hoping to get some clarification and hopefully come through treatment feeling better. I would think that it makes sense that the better you feel going into treatment, the better the result. And the worse you are going in, the worse you will feel. But that's only an assumption on my part.
Other good stuff is they gave
Other good stuff is they gave me an anti-nausea drug with the Clabradine stuff and this chemo doesn't cause your hair to fall out - so no nausea and no hair loss. I got mine in the arm - five days in a row, then the white cell booster shot, then home to isolate. Stock up on Lysol, hand cleaner, face masks, and get someone else to empty the cat's litter box.
I will be sure to discuss
I will be sure to discuss anti-nausea, bc I get nauseated very easily! They give me quite the cocktail any time I have surgery and have to be put under. Good to hear about hair loss...that's what I've read, but it's nice to hear it first hand.
I think the thing I'm most worried about is the high fevers afterwards and ending up hospitalized for who knows how long. Since my levels have gotten so bad so quickly over the last few months, and from what I've read, the more cells there are to kill, the more of a reaction you'll have to them dying, I'm sure that's likely to occur.
Will find out tomorrow. No pets...just kids, so I'm covered there! :)
Just my experience. I had to
Just my experience. I had to drive 135 miles one way to Flagstaff, AZ for treatment so took a motel. My daughter drove up from Tucson to help. After she saw I was "fine" after the first day she went home. Just went back and forth between the motel and the docs for four days. Daughter brought in food before she left and a local friend brought over some food. I didn't feel anywhere as bad as I thought I would. Obviously felt some stuff. Mostly just rested. On day five they gave me the white cell booster shot after the last Claberdine and I drove home 135 miles with no problem.
Once at home my lady coworkers loaded me up with food and made runs to the supermarket for me - I'd made sure to hit the ATM to give them cash. Only came out of isolation for blood work at the hospital which was scary since to me its a germ exchange center. Wore a mask. Felt weak and slept a lot but no fever that I recall. Main feeling was bone pain - inside the bone - and that moved around from bone to bone from day to day. Nothing unbearable. Didn't take meds for it that I recall. Just kept in that place of gratitude that I had a cancer that they could "cure" without hairloss or nausea. How lucky is that?
I also stocked up on Lysol, hand cleaner, and face masks. Infusion nursed poo-poo'd the face masks saying they protected others, not me and if there was any protection it was only about 20 minutes worth. Well, that was enough for me when I had to go around other people.
Chemo is chemo and draining, but I've eventually felt a lot more energy after than before. It is good to have the hairy cell's gone. Noticed it most going up stairs when I got back to work. I used to trudge up them and pant at the top. Now I just climb them and hardly notice an effort and don't pant after.
We're lucky there's a "cure" that is tolerable and doable. Welcome that Claberdine into your body for healing and sick it on them damned hairy cells - kill 'em all!
My doc didn't give me an
My doc didn't give me an option - he said the Claberdine worked nearly every time. I did 5 days outpatient. Each infusion took about four hours from showing up, waiting, getting hooked up, anti-nausea drip, then the claberdine drip. I was able to drive with no problem (or I was lucky). After day five they gave me a white cell booster - and it worked.
I was VERY open to infection with a low white cell count so had to isolate for what turned out to be 30 days. I wore a mask around people and was hypervigilant about germs. After the 30 days my white count was higher than before the treatment and the doc gave me the okay to go back to work.
It still amazes me that I can have cancer without knowing it for ten to twenty years, go in for a week of infusion, stay home a month and have the cancer in remission. I'm sold on the Claberdine because it worked for me.
And in fairness, have no clue about the other stuff.
Cladribine
Hi, My doc also didn't give me an option, I went with what he recommended. I had my treatment in April - a weeks course, and 3 months down the line and I'm in remission. It's not been an easy few months, the chemo was fine, the treatment was fine, but I ended up in hospital with a mystery infection, and then suffered anaphylactic shock from the antibiotic they gave me. 4 more reactions later and I was out of hospital and on the road to recovery. Note - not everyone may have problems with the antibiotics, I'm just one of those people who is allergic to stuff...
My Chemo was 5 days in a row, sub cutaeneous (spelling!!) injections. I was on Cladribine - despite it not being a NICE approved drug yet in the UK.
I had a booster injections to boost the blood counts. Then about 8 weeks after my chemo my blood amazingly came back to nearly normal. I'm back to work, nearly back up to full time. I get tired, but go to bed early when i need to. Last Saturday I did a 15 mile cycle ride, I didn't think I'd have managed that back in March/April.
Still being checked regularly, and feeling pretty ok. I just have to remember NOT to over do things just yet and I'm fine doing that. Loving being back at work - I'm a bit of a saddo haha, but it's a bit of normality after the last few months.
The above is my own experiences, everyone is different, go with what your body tells you. The BEST bit of advice I took on board after my chemo was to take my temps and AS SOON AS THEY WENT OVER THE SET TEMP - GET TO HOSPITAL QUICK... despite my reactions (that's just me being awkward). You really have to follow their advice as much as you can as you really can't mess about with the whole temp/infection situation. In my own opinion and none of the above is professional advice just my experience.
Most of all ask your experts and consultants all the questions you can.
Good luck.
Cladribine in UK
Hello Suzie, I'm sorry to hear you've had such a difficult time - it makes me feel very lucky that my own treatment went smoothly.
Like you I received the five injections of Cladribine - in UK under the NHS. It seems to be the standard treatment, so I was puzzled you said it wasn't NICE-approved. Perhaps there's confusion with recent publicity about a failed trial of Cladribine? But that was testing tablets taken by mouth for Multiple Sclerosis, definitely not injections as chemotherapy for HCL. The cost of developing new drugs is so great that existing drugs are quite often tried on completely different diseases.
John
Newly Diagnosed in Minnesota
Hello Everybody and thank you for leaving the valuable entries on this forum. I was diagnosed with HCL on June 30th 20011 and I'm trying my best to understand my options. Seems as if my numbers call for chemotherapy now. I'm glad to see how effective the two typical regimens are and I need to choose one of them. It seems that here in the forum almost nobody refers to choosing Pentostatin. Please help me understand the reasons why most of you choose Cladribine. Like most of you I would like to get back to life and work as soon as possible. Is that the reason? Does the longer treatment period with Pentostatin tend to prolong side effects that inhibit a return to your former lifestyle? I'm interested in personal accounts about the quality of your life and how long it has taken to return to work. I'm a wedding photographer with lots of Saturdays booked for 10 hours on my feet. I don't know what to tell clients for best and worst scenario for a return to action. I've also read about cladribine as a 5 or 7 day treatment both in an out patient. Preferences? My doctor seems to be leaning toward 7 day in patient. Thanks in advance for you feedback and many thanks to those that created and maintain this site.
Rabbit41
Cladribine or Pentostatin
Everything I'd seen before suggested they were equally effective. However, the UK Government organisation that evaluates treatments (NICE) recently referenced this:
http://www.crd.york.ac.uk/CMS2Web/ShowRecord.asp?LinkFrom=OAI&ID=2201000...
which in turn links to the original publication, and shows a marginal advantage for pentostatin. However, the long-term survival rates (possibly after a repeat treatment) are excellent in both cases.
Note that the original research was funded by the manufacturer of pentostatin, though the independent Government agency didn't find any bias.
Hey Myron, that stuff worked
Hey Myron, that stuff worked for me! I love it. No fun, but the anti-nausea drugs they give with it make it doable. No hair loss. It works for most of us. Not sure why the interest or need to try something else - it works. Sure beats a dirt nap. Just sayin'.....
Thanks for the reply! I have
Thanks for the reply! I have a referral to Moffitt Cancer Center on Aug 4 for a second opinion, but I am leaning toward's the Cladribine treatment.
Let us know!
Do post whether you find an alternative. As a general comment, it's often uneconomic for drug companies to develop new drugs for rare diseases, so we're already fortunate to have something as effective as Cladribine.
John
I am a new HCL Patient
Hi,
My name is Myron, and I am 45 years old. I live in Tallahassee, FL. I was diagnosed with HCL on 17 Mar 2011. I did not present with any symptoms, but it was found during blood tests which I have because I have high blood pressure. I am scheduled to begin Cladribine treatment on or soon after July 18, 2011, however, I am also looking into newer treatment possibilities.
hi
my name is jen. my boyfriend was diagnosed with hairy cell around this time 3 years ago. as he is most stubborn(i say that with love) he didn't seek attention until his spleen almost burst. it was so large it was down to his pelvis and reached across to his liver! he was treated with cladribine and had blood transfusions. luckily he responded well,no infections. even though we were told of the possibility of relapse, he thought that he would be "cured" after one treatment. he didn't keep up with appointments. now it's back. his dr ordered more extensive bloodwork,as last week's came back positive with the hcl, plus it shows abnormal liver results. he also had chest/abdomen ct scan and chest xray today. his lower right ribs are so tender he cant touch them. the spleen isn't as big as before but it's uncomfortable for him to lay on his left side. he told me there was a shadow on the xray, he saw it. he couldnt see anything on the ct scan, it wasnt in his view. has anybody ever had any abnormal chest xrays?
i'm beginning to panic. his appt isn't until next week. i know that other cancers are possible with hcl. it's great to find all the positive info on-line, but has anyone here ever dealt with bad news regarding hcl? thanks for listening. i promise i won't be so long-winded next time!
jen
Hello!
Hello! My name is Diana. I'm 29 years old from the Philippines. I was diagnosed last January. I'm still lost as how I got this illness as I read that it is really rare and even rarer for young adults to get. But I read someone as young as 32 has it.
My doctor advised me to get chemotherapy specifically Cladribine but she also said that it is quite hard to find. Cladribine is not currently available in the Philippines and I hope you can help us find access to it. Thank you!
Response to Diana
Depending on your counts and symptoms, treatment now may or may not be the best course for you. You may want to connect with one of the doctors on the Scientific Advisory Board to get their advice. They may also be able to help you get support from the HCL Consortium to the extent treatment is not available where you live. Hope this helps.
Hello - newly diagnosed
Hi my name is Suzanne. I'm 37, married and live in the UK. I was diAgnosed yesterday with HCL. Due to start cladribine as single injections direct into my stomach for 5 days as soon as I've spoken to fertility specialists about my options.
Would like to chat to anyone else in a similar situation and method of treatment, or anyone else who has experience of their fertility and chemo/cladribine.
It's great there is this forum available.
Regards
Suzanne
HCL and interferon
Hi Suzie,
I'm very sorry to hear that you are going through the initial shock.
I'm 32 years old, living in the UK and I was diagnosed with HCL a few months after my son was born, a year ago.
You mentioned you have talked to fertility specialist. What was there opinion?
My consultant told me this is a rare illness among women in childbearing age, and therefore there's not much information. I'm on treatment with alfa interferon, which apperently is working, but now they told me that it's not really very effective to achieve remission.
It would be really helpful to hear from people in similar situation.
Regards,
Sandra
Reason?
Hello Sandra: Please forgive my curiousity, but why that not Cladribine, which is so effective and well tolerated by most patients? Presumably there was some reason?
Good luck with whatever your treatment, though!
John
Not sure
Well, the main reason is because I would like to get pregnant in the neat future, and I would like to avoid chemo as much as possible.
Hi sandra
I've just been told that I need to concentrate on the chemo side of things now as my bloods are so low. I'm having to put any ideas of babies on hold and hope the chemo doesn't affect me. Due to other complications and timescales, harvesting isn't an option now, but maybe 'putting ovaries to sleep through chemo' is an option for me.
Good luck with your path though. I'm having a tough few weeks going through various health checks. Starting my cladribine early April.
Regards
Suzie
Hello
Suzanne, it's good to see another person from UK on this forum! As I've already described, my experience of NHS treatment was generally very good, with the possible exception of only getting a follow-up bone marrow biopsy done when I specifically asked for it. Certainly the actual delivery of the cladribine (just under the skin) was quite painless: but remember to take a good book!
As a male with a vasectomy I can't comment on any loss of fertility, except to say that I've never seen it mentioned as a side-effect; and that any strong drug is best avoided if you might already be pregnant.
Best wishes, John
Another HCL Naturist
Don't mean to digress from Suzanne's post. Just a conincidence I couldn't help noticing. HCL from too much sun?
Finished my chemo two weeks ago. Took two weeks off work to recover - still weak but feeling better. Blood work yesterday showed WBC up to 1.8 which seems good since they were 1.9 before chemo.
Monocytes are non-existant though. 0.0 Know they're supposed to be low now and that's what the chemo kills, but wondering/hoping they'll come back. Without them I'm wanting to find out if Howard Hughes old penthouse is available - a real germaphobe.
Causes?
Well fancy! But I don't think sun. More likely the benzene I handled at school before it was known to be a carcinogen; handling a radioactive isotope with less care than applied these days: working near an oil refinery... Perhaps this forum would be a good place to look for commonalities in people's histories? - John
Aye, I worked a summer at a
Aye, I worked a summer at a uranium mine as a lad of 17...who knows.
Hi
Hi John
John, thanks for your reply, I was told not to bother with forums by one nurse, but I'm a firm believer that talking (or writing) about things helps. So I mentally poo poo'd her comment as soon as she said it.
Glad the cladribine wasn't too painful, I'm not yet on it but will be soon. I'm reading through the bumpf given to me from the hospital, but I'd already read most of it as they are using the Macmillan factsheets to inform patients, which I'd read already, though my inquisitiveness has already extended beyond simple factsheets!
I'm almost there with getting my head around what's what, and the only thing I'm not looking forward to is not seeing my family and friends so much and being in isolation. Though I'm determined to assert possitive mental attitude). I'm already not allowed to be in work as it's a large office and people will insist on coming in to work with their colds! Are you still working?
Grateful for any other handy NHS tips - I'm not one to be shy about asking questions which my doctor is soon finding out about! I like to have all the facts where I can!
Good to hear from someone else in the UK too, how is your treatment going?
Regards
Suzanne
More UK chat . . .
Hello Suzanne: Perhaps that nurse was afraid you'd fall prey to people pushing 'alternative therapies'; there's a lot of nonsense on the net, and cruel exploitation of vulnerable people gullible enough. My cladribine infusions really weren't 'not too painful', but not even uncomfortable. At least, I remember a dull ache one time when the speed of the little infusion pump was set too high, so the nurse simply slowed it down. Just take a book or MP3 player so you don't get bored.
My treatment? All finished a year ago and I feel 100% healthy. My blood counts are normal and stable, so the 3-month monitoring became 4-, now 6-. Am I still working? Basically I'm retired but still do some consultancy work (I'm a physicist/engineer).
I must be careful here to emphasise that I'm not advising you, just answering the question about my experience! After the treatment I immediately led a perfectly normal life, and didn't get any infection at all - thanks to luck or (more likely) the precautionary antibiotic I was given. Looking back at 2010's diary, I was going into the office about once a week; went to swimming and sauna sessions at our naturist club; had a weekend in Bristol and visited two museums; etc etc. But of course, your condition may be very different, so do follow whatever medical advice you're given.
It is worth asking your doctors, though, just how careful you have to be. Although I've no time for 'alternative' stuff, I'm sure you're right that mental state is important. As far as you're allowed, I hope you can enjoy this time off work and keep contact with people who value, respect, and love you.
Best wishes, John
Thanks
Thanks for the information John. At the moment I'm going through the how people react when you tell them that you have a form of luekaemia most are fine, some can't talk to me. I kind of understand, but the mad thing is I don't look ill. I feel great in fact! Walking every day (2 or 3) miles - as I'm not allowed to the gym. I'm not tired at all.
This was picked up purely by chance, I had a full screening of my bloods done before I was due to start Ivf, and that picked up I was anaemic with pancytopeania. After a stay in hospital (as I had a chest infection) they discovered from bone marrow I had the hairy cells. They let me out of hospital and they've put me on antibiotics to keep me free of bugs as much as we can.
I will definitely ask my doc how much I can do. I fly fish and I'm hoping I'll be allowed to go trout fishing when the weather is warmer! :-) I'm completely off work at the moment, and have some great family and friends who are supporting me well. Although I will calm down my activities a little while after the chemo.
I'm a graphic designer, so I'm thinking I can keep my hand in and tackle some rebranding ideas for some of my projects while I'm off and then go back to work as soon as I can! I'm missing work as I really enjoy it.
Thanks for sharing your info', some interesting ideas into the causes, I've not had any exposure to anything similAr, but I am wondering if that drug I was on might have been a trigger. It's a good idea for a forum topic really. The only thing I've been exposed to is a 100 year old house complete refurb' and I'm out in the countryside a lot especially when I was younger.
Regards
Suzanne.
Glad you folks are here. My
Glad you folks are here. My WBC count has been getting lower, just had a physical and doc sent me for a bone marrow biopsy and CT scan. Got the diagnosis Tuesday and start the 5 day 2-CDA treatment Monday.
I'm 66yo and live in a remote area of Arizona - which is also a tourist area where visitors bring germs from all over the world...gets a tad freaky - but so far so good.
Thanks for sharing what's down the path for me.
Welcome
Good luck with it next week. I can honestly say I wasn't aware of the slightest side-effect from the 5-day treatment. Life was completely normal. The 'chemo' word is scary and can trigger the 'nocebo' reponse just on its own, because we all know people who've really suffered from kinds very different from this. Don't expect problems and most probably you won't experience any.
John
Thanks John. The bone marrow
Thanks John. The bone marrow dig went well save a coupld of sciatic shots. Barium and dye for the CT went okay. Remain hopeful the chemo will go well too.
For sure have to make some infection control adjustments after...challenging since I manage a 12 bed detox in Indian Country and my little town is a tourist mecca so we get germs from all over the world. Maybe go live in a cave for a while.
Weekly Cladribine Treatment - Results!
Hi all,
My first post here so please be gentle! :) I'm a 50 yr old white male in Australia and was diagnosed with HCL in Nov '10. I'd previously had regular annual medical checkups and for a number of years we saw my Neutrophils and Platelets going down consistently, not knowing quite why. My Dr ref'd me to a heamatologist and I got the pronouncement of HCL. Wow, what a day that was!! I don't think I heard a word he said for 5 minutes after he used the 'L' word!
So, no treatment over Xmas so as not to risk anything during the festivities as I have 2 young boys. My immune system was good enough to see me through the festive season and I was assurred there was no urgency like can be the case with some types of cancer. Early January'11 I started a weekly infusion of Cladribine into the back of my hand. The dose was 10mg in a 600ml sodium chloride(?) mix/drip. It was done in a comfy chair at a clinic and took about 2 hours each infusion - 7 infusions over 7 weeks. Apparently this method is easier on the body and immune system than the quick sharp 'hit' of getting a needle every day. That's how is was explained to me at the beginning and it turned out, happily, to be true. Of course, I don't know how 'I' would have gone on the daily regime but there you go!
I had my final treatment yesterday (23/2/11) and the worst I can say right now is that I'm moderately tired - with ups and downs. I had no sickness, no fever, and no hairloss (not to be expected anyway with Cladribine). I did have a few headaches but I put that down to other factors; mainly stress from a few different things like work and possibly the psycological pressure of the treatment - who really knows!? They only lasted a day or so anyway and were helped by paracetamol. The worst 'side effect' I can report is that of a moderately bad rash on my belly, sides and arms (not face thank God). It only occurred in the last week or two. We think it was a build-up of one of the tablets called Allipurinol used to counter the uric acid build up, but can't be sure. I stopped taking it 4 days ago and took an antihistamine (Clarantyne) and the itching is 90% gone. I feel so fortunate that I can say this was the worst part of the whole experience.
Of course, I'm not getting cocky as I know I'm not fully out of the woods yet. My immune system is so close to zero it's not funny and platelets are still low. The potential for a fever/infection is very real. I'm steering my life to stay away from crowded places and people generally if I can - worked well so far! I'm seeing the Dr in 2 weeks so a blood test then may show some progress. They say 2 - 3 months after the final treatment and one may have bloods back to normal - all going well.
My main reason for my posting was just to let people know I found the weekly administration of the drug to be quite tolerable. The experience/side effects were nothing like one ordinarily hears about classic 'chemo'. A few stories on YouTube show the daily treatment over 5 days can be a bit rough. Importantly though, be guided by your doctor as he knows you personal circumstances best. I have mine to thank for a reasonable experience from a potentially bad situation. I hope I've helped here. I would welcome any questions, although I'm not sure how that works on this forum - I'm new to all this! God's love and good fortune to you all!
Cheers, Brian H.
HCL in Fresno, CA
Hi everyone!
My name is Randy, 55 years old and I was diagnosed with Hairy Cell Leukemia at the Stanford Cancer Center about a week ago after a bone marrow biopsy.
Since I live about a three hour drive from Stanford, we decided to have Kaiser administer the 2CDA treatment in Fresno instead of Stanford.
They are offering some different deliveries of the 2CDA, either a 7 day 24hr/day infusion, a 5 day 24hr/day infusion or a 7 day treatment with 2 hours of infusion a day in a chair.
Of course I have no idea which to pick although I have been assured by the doctors that the response rate is the same regardless of which one I pick.
Anyone have any ideas on this?
Thanks
Randy
Ask an expert
Perhaps you should ask this question in the "ask an expert" section of this web site and get an answer from a doctor who specializes in treating this disease.
Delivery of 2CDA (Cladribine)
Hello Randy,
First, I should say that the 'Dr' in my username does not mean I'm a medical doctor. If the advice of your physicians is evidence-based (and it does accord with everything I've heard and read), then why not accept it at face value, and pick whichever option is most convenient for you? If your experience with the 2-hour option's as good as mine was, then you'll want to be out enjoying yourself the rest of the time, not tied to a pump!
Whichever you choose, I hope it goes well for you.
John
Having HCL in England
Hello,
I'm John, age 64, living near Dartmoor in southwest England. Having posted a longer account in the 'Share your story' section, I'll just say here that I was diagnosed with HCL two years ago, and successfully treated with Cladribine six months ago. I count myself lucky to have been born late enough that such effective treatment has been discovered, and in a country where it's easily available to everyone.
John
HCL and secondary thyroid cancer
Hi,I am,Rob, a 62 year old male, diagnosed with HCL and treated with 2-Cda in February of 2002. My blood counts have been on a roller coaster, with small variances, since treatment but have stayed free of HCL. In 2005 the VA in Tampa, FL found several nodules in my Thyroid and tracked them with yearly sonograms. Late this past year, 2009, I moved to the Virginia Beach area and have been seen by Doctors at the Hampton Veterans Affairs hospital. In December I was referred to the Thyroid Surgeon who removed the right half and 2/5 of the left side. Test results indicated cancer and they decided to remove the rest of the left and do a dissection of the interior of left neck to biopsy some nodules also found on a follow up CAT scan. This last operation affected my vocal cords leaving me with just a horse whisper, hey but it could have been worse.
My blood counts are "low but stable" according to my oncologist. The
thyroid counts are really high and the endocrinologist is working on
adjusting medication to bring them in limits. These two Doctors are
proposing doing iodine radiation as soon as the counts get better. They did the surgery to remove all tissue as possible to be able to use a lower dose during the treatment. They are telling me that there is not much previous treatment so they are not sure what this will do to my HCL. I understand that the radiation will kill all my white cells which cause me much concern because of infection. As it stands I have been allergic to every anti-biotic that they have used on me the last 10 years. I am currently looking for an Allergist in the local area since the VA does not have one on staff.
Is there anyone who has experienced this secondary thyroid cancer? The Doctors tell me that I am a really rare patient. By the way the Veterans Affairs gave me an additional 100% disability due to my exposure to Agent Orange in Viet Nam.
Rob
HCL - the return!
I have been in remission for 17 years now, but have just had the bad news that its back!! I'm about to have bone marrow biopsy to see the extent of the damage. Anyone else been in remission that long?
Hello
Hi my name is Marc. I was recently diagnosed with Hairy Cell Leukemia while undergoing a standard medical exam in Costa Rica (no med insurance). Now, I'm navigating the treatment options. Have just decided to participate in a Phase II clinical trial at the National Institute of Health, Bethesda, MD. I will either be given a dosage of Rituximab simultaneously to my infusion of Cladribine, or six months after 2-Cda treatment. We'll see. But, I'm being admitted to NIH this Sunday evening. Will let everyone know how things are going. Thanks to everyone participating in this forum, and all the invaluable information shared freely. I wish everyone a Happy, Healthy New Year!
Didagnosis/Treatment
I have noticed that many on this forum have been treated differently than I. I have had blood chemistry issues for about 15 years but was only recently (July 2008)diagnosed with HCL and started treatment in August this year after my WBC dropped to .2 and I was pretty sick. I have been undergoing treatment with Pentastatin every 2 weeks with a shot of Neulasta 24 hours after each treament. I will finish the treaments in January 2011. So far, so good. Was just wondering if anyone else has/is being treated with the same chemo as I.
All of you stay well.
Tony Cooper
Fevers with Cladribine since Day 3
My husband Jude was officially diagnosed with HCL on March 2nd, 2011. Jude went in for a physical during Christmas week, and lab work showed pancytopenia. He hadn't had a physical since Jan 2005, when his WBC count was reversed. He was asypmtomatic. 2 years ago, he started to not feel well, and had a colonoscopy and endoscopy, which showed no issues. In the fall, I noticed that he tired easily and was short of breath after doing just a little bit of yard work. So, when we learned that he had pancytopenia, I was not surprised. I am a Medical Technologist and have worked in Laboratory Medicine for over 30 years.
He had his Picc line put in on the 4th and began his treatment on Tuesday, March 8th with Cladribine. He is on an infusion pump at home 24 hrs a day for 7 days. On Tuesday and Wednesday, he had low grade fevers around 99.4 degrees F. However, on his 3rd day(March 10th), he developed a fever of 101.0 and was told to take tylenol. At about 3 am, his fever spiked to 103 degrees and a visit to the Hematology clinic and lab work showed no infection, so he is home. The fever continues to hover around 102 to 103, but goes back down to 99.8 after taking tylenol.
I am hoping that the fevers begin to subside. The infusion will not be completed until Tuesday, March 15th. Does anybody know how long the fevers related to the drug's breakdown of the his hairy cells will last?
Rita
Fever
Just finished my chemo on March 4th. Did five days in a row outpatient -two hours a day. No fevers. Did have hot flashes at bedtime but they passed. Did get a 100.3 reading one night at bedtime a few days after chemo but it passed quickly. Never medicated it.
This is day 9 since finishing. Chemo drained me...not unexpected. This is the first day I'm feeling semi-normal. You're doing right to stay in close touch with the doc.
And guessing its normal to expect an extended post chemo recovery period after poisoning the body for days. I'm 66yo. Doc said my post chemo response was pretty expected. Had that same stuff, claberdine or whatever and a white cell booster shot after the chemo.