tag:blogger.com,1999:blog-710390798644197680.comments2022-11-02T07:25:26.979+00:00Hairy CellRChttp://www.blogger.com/profile/10020475949178203233noreply@blogger.comBlogger105125tag:blogger.com,1999:blog-710390798644197680.post-73765015177312152442019-07-17T14:20:56.415+01:002019-07-17T14:20:56.415+01:00I am now 60 days post cladribine and still awaitin...I am now 60 days post cladribine and still awaiting my bone marrow biopsy. Is there anyone here that feels like theyre burning up alot but temperature normal. I know as a female I'm statistically in the minority of hcl PCs. I'm 52.Anonymoushttps://www.blogger.com/profile/02600586139866981096noreply@blogger.comtag:blogger.com,1999:blog-710390798644197680.post-56108956770586058582017-07-28T12:43:44.024+01:002017-07-28T12:43:44.024+01:00nicenice<a href="http://cabodivetrek.com/">private dive charter in cabo san lucas</a>https://www.blogger.com/profile/15006886386794759557noreply@blogger.comtag:blogger.com,1999:blog-710390798644197680.post-80344803843230750542016-11-20T17:00:13.103+00:002016-11-20T17:00:13.103+00:00We have similar situations...my 6 month BMB showed...We have similar situations...my 6 month BMB showed less than 1%...I was very happy with the result considering i was at 90% when diagnosed. I decided not to do Rituximab as I am feeling good and wanted to keep that option in my back pocket. So glad to hear you are doing well. Would love to chat with you at some point in the future. Anonymoushttps://www.blogger.com/profile/12553235312155269118noreply@blogger.comtag:blogger.com,1999:blog-710390798644197680.post-40001408472683866052016-11-16T16:57:01.559+00:002016-11-16T16:57:01.559+00:00Hi Eric, i should probably have blogged the result...Hi Eric, i should probably have blogged the result but never seem to find the time.<br /><br />The BMB showed a slight infiltration of HCL. 0.9% in fact. So technically my remission is over.<br /><br />That said its a very low infiltration and there is nothing present in the blood, which there was when i was first diagnosed and treated.<br /><br />I'm now having slightly more frequent blood tests and check ups. The intent is to treat again with Cladribine if i get highly symptomatic or get to more than 5% bone marrow infiltration.<br /><br />How quickly I'll go from 0.9 to 5.0 is hard to tell. It is possible that, because analysis is now much more accurate than it was six years ago that I've always had 0.9% and it just wasn't detected. There is however a slow decline over the last few years of my white cells so it's likely that its just coming back very slowly.<br /><br />The CT scan i was due to have turned into an ultrasound, which is much easier, but still allowed them to have a look at my spleen, kidneys, liver, basically everything. All was normal, including spleen size, so I'm not symptomatic internally right now either.<br /><br />-RichRChttps://www.blogger.com/profile/10020475949178203233noreply@blogger.comtag:blogger.com,1999:blog-710390798644197680.post-11313194866077107982016-11-16T14:47:14.948+00:002016-11-16T14:47:14.948+00:00Hi Rich - just curious...how are you doing? Did th...Hi Rich - just curious...how are you doing? Did the BMB reveal and MRD or HCL?Anonymoushttps://www.blogger.com/profile/12553235312155269118noreply@blogger.comtag:blogger.com,1999:blog-710390798644197680.post-44209192917479555822016-04-02T18:30:31.785+01:002016-04-02T18:30:31.785+01:00Hi Wendy, Thanks for taking the time to post a com...Hi Wendy, Thanks for taking the time to post a comment on my blog. I understand how you feel in relation to the tiredness. I remember thinking "is this the new normal for me!?", "I'm to young to feel this bad forever!". <br /><br />For me it took about a year for the fatigue to pass and to begin to feel i could work normally. I still get times when it seems to come back but maybe that's just normal life.<br /><br />I would try not to dwell on the experiences of the others that your doctor knows of, everyone is different. Cladrabine is a very effective drug it just takes time to get over it, and if it does come back then you can always be treated again. <br /><br />There are some links to some online support groups (other HCLers) on the right hand side of this page. And feel free to message me if ever you want to chat.RChttps://www.blogger.com/profile/10020475949178203233noreply@blogger.comtag:blogger.com,1999:blog-710390798644197680.post-92115402956100381772016-03-18T06:40:25.441+00:002016-03-18T06:40:25.441+00:00Hi I was diagnosed nearly a year ago - May 2015. I...Hi I was diagnosed nearly a year ago - May 2015. I had Cladrabine in July and my stay in Hospital was about 10 days. I have terrible tiredness at the moment and was starting to dispair that it will never go away. I am working two days a week to pay my bills. Then I have to rest ready to do it all again! My doctor ( Australia) has told me of only three HCL's he knows of, one didnt make it. One is 8 years now and been through chemo three times and a spleenology. And me. Still new on the journey.I have been having bad days lately - mostly because there didnt seem to be an end to my tiredness and no one can tell me IF it will ever go away. Reading this has given me so much hope! Im 52 Female. It feels so good to know there are more of us out there. I was so sick just before my chemo, my brain was so foggy, I wasnt up to researching on the internet. I am glad to find your blog now.Thanks for taking the time to write itAnonymoushttps://www.blogger.com/profile/05281998073935176499noreply@blogger.comtag:blogger.com,1999:blog-710390798644197680.post-8435825271869952872015-11-10T15:24:29.955+00:002015-11-10T15:24:29.955+00:00Hi Brian, I am glad to hear you didn't spend a...Hi Brian, I am glad to hear you didn't spend anywhere near as long in hospital than I did. From other's I have spoken to my experience seems to be at the extreme end, at least for those who have gone on to show a remission.<br /><br />Now, five years on, the fatigue I felt in the first year is long gone. But it did take the best part of the year to shift. <br /><br />I do still get tired sometimes but I am working full time and have a little girl who likes to get up early at weekends. I don't think that I could attribute any state of tiredness to the chemo. Just to being a father who needs to exercise more and get an early night once and a while.<br /><br /><br />RChttps://www.blogger.com/profile/10020475949178203233noreply@blogger.comtag:blogger.com,1999:blog-710390798644197680.post-89015425066982987192015-11-05T21:41:15.867+00:002015-11-05T21:41:15.867+00:00I enjoyed watching your blog as the time for my Cl...I enjoyed watching your blog as the time for my Cladribine treatment approached. I'm 48, so somewhat of a youngster for this disease as well. Otherwise very healthy. I must admit that the amount of time you spent in the hospital had me a bit worried whether I would end up in the hospital as well and for how long. Starting October 19th, my week of treatment was uneventful, but I did end up in the hospital for 3 days and 3 nights a week later with neutropenic fever and an allergic reaction to an antibiotic. However, today I had very good blood test results which are near normal. I no longer have that feeling of being tired to my very core. I hope that continues. How do you feel day to day at this point? Have you noticed much of a difference in how you feel now compared to just before you had your treatment? Here's to a lasting remission...<br /><br />Brian BLhttps://www.blogger.com/profile/06283238583885894027noreply@blogger.comtag:blogger.com,1999:blog-710390798644197680.post-25185625490310306782015-10-05T13:16:45.618+01:002015-10-05T13:16:45.618+01:00Hi Eric,
Thanks for taking the tome to comment. B...Hi Eric,<br /><br />Thanks for taking the tome to comment. Best of luck with the treatment.<br /><br />Rich<br /><br />RChttps://www.blogger.com/profile/10020475949178203233noreply@blogger.comtag:blogger.com,1999:blog-710390798644197680.post-40040103908746829082015-10-03T10:51:02.997+01:002015-10-03T10:51:02.997+01:00Thank you for taking the time to document your jou...Thank you for taking the time to document your journey. Just diagnosed and preparing for treatment...this has been so helpful. Anonymoushttps://www.blogger.com/profile/12553235312155269118noreply@blogger.comtag:blogger.com,1999:blog-710390798644197680.post-17652477891509572892014-08-07T23:17:39.025+01:002014-08-07T23:17:39.025+01:00Hi Rich,
I haven't checked out your blog for a...Hi Rich,<br />I haven't checked out your blog for a bit, but I thought of you today, as I also wrote to your aunt. Hope all is well with you. You are correct--just battle on, regardless! Cheers! <br />-Cousin LisaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-710390798644197680.post-56881769201496591722014-08-05T22:04:15.172+01:002014-08-05T22:04:15.172+01:00I know exactly how you feel. I have learned to put...I know exactly how you feel. I have learned to put the HCL to the back of my mind and get on. One thing that does get to me though is when people tell me my Leukaemia is now cured because my counts are OK, not understanding that it is treatable but incurable.....<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-710390798644197680.post-15389368534659222812014-02-12T09:27:41.888+00:002014-02-12T09:27:41.888+00:00Just found your blog. Very inspiring. My brother ...Just found your blog. Very inspiring. My brother was diagnosed and had treatment last year. Bloods looking better now but still emotional time for us all. Anonymoushttps://www.blogger.com/profile/10705915524057722977noreply@blogger.comtag:blogger.com,1999:blog-710390798644197680.post-24580103936040434792012-05-25T18:58:22.177+01:002012-05-25T18:58:22.177+01:00Looking very fit! You put me to shame, Richard. I ...Looking very fit! You put me to shame, Richard. I need to make time in my life again for some exercise: I know those endorphins really do work. <br />Keep on chasing The Small, and The Scary Year will hopefully pass without any problems.<br />I like The Mummers shirt, by the way.Drakeygirlhttps://www.blogger.com/profile/04044143270148143924noreply@blogger.comtag:blogger.com,1999:blog-710390798644197680.post-11735390825567758762011-08-01T12:00:50.086+01:002011-08-01T12:00:50.086+01:00Brilliant, brilliant, brilliant news Richard! I am...Brilliant, brilliant, brilliant news Richard! I am so happy for your and your family and very relieved for you too. Stay strong and healthy and continue with your positive outlook - it's obviously working :-) <br />Love from,<br />I-Cheng<br />xxxAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-710390798644197680.post-715670271356152942011-07-12T11:53:07.460+01:002011-07-12T11:53:07.460+01:00Very moving stuff R. I have the beginnings of an u...Very moving stuff R. I have the beginnings of an understanding of what you must be going through from what my father went through (with Hodgkin's Lymphoma). Sending good vibes your way,<br /><br />A"Rosbif"noreply@blogger.comtag:blogger.com,1999:blog-710390798644197680.post-55388160952155678342011-06-13T19:20:12.606+01:002011-06-13T19:20:12.606+01:00Hi Richard,
Hope the gym is going well for you an...Hi Richard,<br /><br />Hope the gym is going well for you and that you are reaping the rewards of your exercise. Having read your piece, I too feel inspired to get back into shape so thank you for the extra boost! <br /><br />Lots of love to your beautiful ladies and to you too,<br /><br />I-Cheng<br />xxxAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-710390798644197680.post-84461880803108871552011-01-11T10:18:17.638+00:002011-01-11T10:18:17.638+00:00Hi Brian,
I finally made the time to post an upda...Hi Brian,<br /><br />I finally made the time to post an updated video blog last night. Hadn't realised, until i looked back at the old videos just how much weight I had lost in the run up to being treated. <br /><br />You can now see my much plumper self giving a run down of the last year on my YouTube channel or from the Video link at the top of this page. <br /><br />I hope the first session went well. I assume you're having it as an injection and not as a drip.<br /><br />Good luck with your treatment, let me know how it goes.<br /><br />RichRChttps://www.blogger.com/profile/10020475949178203233noreply@blogger.comtag:blogger.com,1999:blog-710390798644197680.post-75888837684579067962011-01-11T07:56:50.923+00:002011-01-11T07:56:50.923+00:00Hi Richard, Incredible blog, thank you so much for...Hi Richard, Incredible blog, thank you so much for taking me on your journey with you. I've just been given my first session of Cladribine today (1/01/11) and feeling normal so far. Here's hoping that continues. I'll get it weekly, not daily. This is meant to minimise any ill effects - we shall see! Your daughter is beautiful, you are such a lucky man in so many ways. Looking forward to your video update on YouTube. Best wishes from Australia, cheers, Brian.Aussie1https://www.blogger.com/profile/12401599279430830715noreply@blogger.comtag:blogger.com,1999:blog-710390798644197680.post-23779705653347108052010-10-21T02:37:30.960+01:002010-10-21T02:37:30.960+01:00Sounds like you are moving on and getting back to ...Sounds like you are moving on and getting back to "normal" life. I have a lot of the same feelings you do. After almost 3 years since my treatment, not a day goes by that dont think about it. It all came back to me when I co worker told me he had throat cancer. I talked with him every day during his treatment until he could no longer come into work. He is fighting but it is tough. I think we had it easy compared to most. So I guess you could say we are lucky!<br /><br />Take careGreg Gilberthttps://www.blogger.com/profile/13465996389733057553noreply@blogger.comtag:blogger.com,1999:blog-710390798644197680.post-788319392671672442010-08-07T02:52:38.637+01:002010-08-07T02:52:38.637+01:00Congrats!!! Glad to hear the news and good luck!!!...Congrats!!! Glad to hear the news and good luck!!!<br /><br />Greg GGreg Gilberthttps://www.blogger.com/profile/13465996389733057553noreply@blogger.comtag:blogger.com,1999:blog-710390798644197680.post-80292521997120422952010-07-27T22:02:21.173+01:002010-07-27T22:02:21.173+01:00Brilliant news mate! We will definitely have to m...Brilliant news mate! We will definitely have to meet up for that drink, just as soon as your guys install my transmission server :-) <br /><br />Love to the family.<br /><br />See you soon<br /><br />BaggieAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-710390798644197680.post-69835227737836907432010-07-21T21:21:53.992+01:002010-07-21T21:21:53.992+01:00We are so, so happy for you Rich and cannot begin ...We are so, so happy for you Rich and cannot begin to imagine the relief you must be feeling now. Well done you for toughing it out and coming out the other side! And long may your good health continue :-)<br /><br />On another note, it was wonderful to see your lovely wife and beautiful daughter the other day - Emma really is a gorgoeus little girl and you must be so proud and amazed at creating such a perfect being. <br /><br />Looking forward to seeing you the next time we are in town! Let's hope it is not too far from now...<br /><br />Lots of love from,<br /><br />I-Cheng, Stuart and Annabelle<br />xxxxxxxAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-710390798644197680.post-16958472943676956182010-06-18T07:55:19.532+01:002010-06-18T07:55:19.532+01:00Great to read an update - I check back every so of...Great to read an update - I check back every so often and still smile to see a brand spanking new Emma in all her 'birthly' glory. Ok I know that's not really a word!<br /><br />My colleague's 30 year old son recently was diagnosed with acute lymphoblastic something or other type leukaemia. His only hope is a bone marrow transplant and they are currently tissue typing his family members. Knowing that you've made it through your ordeal this far is helping me to support her. Can't let go of that hope.<br /><br />Glad to hear you are all enjoying family life. Wish I could come and visit! Stay happy and well xxJudehttps://www.blogger.com/profile/09208469744618172845noreply@blogger.com