I'm wondering how many of us are 13q14, unmutated, ZAP-70 +, time since diagnosis, whether or not WBC count and ALC are elevated and how fast is it climbing. Is anyone experiencing tiredness/fatigue and if anyone has had treatment or getting close to treatment? I'm 13q14, unmutated, ZAP-70 + with WBC count at 98,000 and ALC of 90,000 at last blood count Mar 21st, all increased steadily within 1yr 3 months and close to treatment. Tiredness/ fatigue big problem in last 5 months with recurring tummy infection and nausea. Some days are really good, some days fair to middlin' and some days terrible.
Denise
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buckinhard
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Hi Denise, sorry I can't answer your question because I haven't had a FISH test (they're not routinely done in the UK) but I'm sorry you're having a rough time (all be it intermittent). I'm sure others will be able to relate to your present situation. Have you discussed with your doctors what form any treatment would take? I think the important thing is too, do you feel ready for treatment now?
Love your photo! He/she looks a feisty, lively creature. I can imagine you benefit enormously from your horses and other creatures (of which I recall you saying there are many!).
I've not mentioned before, your name just dawned on me and what a lovely name !! My new heme/onc is Dr. Choi. He's partners with Dr. Kipps and Dr. Castro at UCSD Moore's Cancer Center. Dr. Choi mentioned treatment in a few months finished, mentioning Chlorambucil and GA101 and another one he's interested that's still in clinical trials, but will not do any treatment until absolutely needed.
This is one of my horses I retired off the racetrack. Her barn name is Angel and sometimes Angel's Whisper.....though she's not whispering in the photo. Angel is a lovely mare,12yrsold, 16.3 hands and 1300 pounds, very athletic, and a beautiful mover. I been working with her to do 3 day eventing or/and dressage but feeling so tired etc has interrupted her training. She was an orphan foal, her mare prolapsed her uterus during foaling and was put down... horrible. Animal pregnancies and birthing is as dangerous as human pregnancies and birthing. Orphan foals can be quite onry, pushy and typically play hard with their people since they think they are people.Their mare's job is to discipline them, and they are better socialized with other horses. After she came of the track, Angel was dangerous, not on purpose, but simply because she was racing fit and very big, with an attitude AND an orphan. I'd keep facing her, with the muck cart between us. We bred her, but lost the foal, Winston, due to clostritium bacteria that was causing the internal lining of his intestines to slough off. Winston was just 3 days old and suffered great pain. Angel is character act. Now, I hug, kiss and love on her, although she will threaten me sometimes, I scream so loud and fast for my own safety, I'd scare her, then she'd turn away. I've never hit her.... my screams do the job. Thru the years, we've established respect and boundaries. Funny thing she does when she's feeling vulnerable. Angel makes the smacking sound and mouth jester foals do when they are showing submissiveness. I love her. She's very similar in her breeding, looks and temperament as one of my other racehorses. His name is Colorado Dash, I call him Pony, although he's @1400 pounds and 16 hands. He's my soul mate. My life is complete in the company of my animals.
Well you certainly sound in good hands with your medical team Denise which is such a bonus!
I'm not a horse person myself even though I love their power, grace and individual personalities. Angel certainly sounds to be a challenging but loveable character!
(I did initially reply more fully but have had to delete it when I realised the post isn't restricted to the community). Might of identified me I'm afraid.
Wishing you all the best Denise and hope you can continue much longer without treatment.
Denise. - How wonderful that you see Angel as a challenge and not an animal to be disposed of because of her issues. I am also an animal person, with rescue dogs and cats and have had a collection of just about everything smaller in the past, mostly brought to me from my students when I was teaching.
You are in a good place if you are at UCSD. Fatigue is very common with CLL. Some have reported various digestive issues as well. Unfortunately, it's usually hard to distinguish something like irritable bowel syndrome from CLL related issues. I know that my GI doctor, when I have colonoscopies, always takes a couple of extra snips for biopsy to make sure the CLL doesn't involve the colon.
UCSD has some exciting trials going on. Someone just posted about a new one that Dr. Kipps is excited about. She is in one of the newer ones - I haven't internalized the letters and numbers, but will check, and doing well working with Dr. Kipps.
Hi Pat, I believe it was Cllcanada who suggested Dr. Kipps group after I posted how awful my heme/onc was. So, it took from Sept 2013 to March 2014, to get an appt. I enjoyed Dr.Choi. He was a wealth of info, a wonderful listener and so very kind and compassionate. I have a choice to see Dr. Kipps but have decided to stay with Dr. Choi . That's great, some one else is with the Kipps partnership, I see Dr Choi April 30 and find out more about the trials and post what I find out.
Totally awesome to have a fellow... fella'...animal advocate. What subjects did you teach?
Angel is tough and so is my Pony, actually he is far more hot tempered than Angel. I have never had a horse I couldn't be a partner with, including a Storm Cat filly, with the barn name, Kid Cat. Storm Cat's stallion fee was $500,000, the year before he was pentioned it was $400,000. Storm Cat passed last year at 30 yrs old. He produced hot tempered, strong willed, fast runners, and thus the high stallion fee. Kid Cat was by far the most difficult horse I've ever dealt with, an extremely alpha mare. Sometimes I would cry because she took so very much out of me, yet in the end I realized we had something together that I'd never had with another horse, a powerful connection of like personalities and understanding, trust and enjoyment with each other's presence to the highest degree. Totally awesome horse. Kid Cat would jump up in the air, when coming down on to her front legs, she'd buck so hard and high, she'd flip herself over on to her nose. Unbelievable power and athleticism. When I would come for her with the halter, she would close her eyes, I'd slip on the halter and kiss her eyes and muzzle. Funny story about her and her effort to accept instead of fight. The first time I put the bridle with bit on her, she stood for me, like a stone statue. I touched her to see what was up, she fainted and nearly went completely down to the ground. I have never seen such willingness and trust vs fight or flight.I got her as a 2yr old, only barely halter broke and lost her at 6 yr's old from colic. Kid cat had 1 colic surgery , then 2 separate lengthy hospital stays for colic, 2 other colics at the ranch and the last colic took her life. Kid Cat was a "stone maker" meaning she produced stones in her intestines, sooner or later her death from colic would happen. I would check the paddock every day to look for stones she passed. They were about the size of a very small egg, smooth surfaces with a flatter side which meant she had a larger stone in her intestine.
I'm glad you liked Angel's pic. If no one minds I will post more in the future and hope I'm not gabbing on in the wrong forum. If I go on to much, please let me know.
11q, that's a hard one. I know you've had treatments and are improving your blood counts. I think about you guys and gals here and everyone's struggles. I pray for everyone for a good outcome with treatment and a good life.
Hi Denise, more pics is Ok with me Are you on Facebook?
I'm one of the fortunate ones Denise, I went from 4 years WW to the RESONATE2 study (Ibrutinib arm).
It's going really well. On the other hand, I have just had a biopsy on a suspected Basal Cell Carcinoma but which might not be. So it's long sleeves, jungle hat and 50 factor sunscreen for the summer
There are people much worse off than me here. The 11q is notorious for bulky lymph and I had my fair share before I managed to get a place on this study but I've never really suffered from fatigue and continued running up until a painful dose of sciatica in 2012. I'm now back in the gym at last and have a CT scan coming up next month which I hope will see a further reduction in the already 50% reduction in tumours in the abdomen, chest annd back, in the last CT scan.
Horses sound like cats with their individual personalities and quirks.
Hi Mike ! so very glad your treatment has gone well althought the Basal Cell Carcinoma sounds ominous. I was reading one of Dr. Sharman's blog on markers and treatment, so glad you have done well !! The gym, that's fabulous !!! I read you are a firefighter, so you are natural to the world of working out, weights, running and fitness in general. It is truly wonderful to see the CLL put down a few notchs and live a fuller life. !!
I am on facebook, are you? I do 90% work on fb in secret groups. We fight BLM roundups of our wild horses and burros, anti horse slaughter, and anti Ag Gag laws. The government here in the US is awful, corrupt and the lobbies with the most money, rules. Not the America I grew up in and served in the military for.
So cute, horses are like cats! It's true, the only exception is herding cats is harder than herding horses !! grinning!
No Denise I'm not a firefighter, although in some ways I guess we all are extinguishing CLL blazes here and there. I just thought FB might be a better place to put lots of horse photos.
Can't add much except to suggest being alert to C Difficile as a possible infectious agent as a cause for your stomach problems. <en.wikipedia.org/wiki/C_Dif...
I checked it out and YIKES..... I hope not. Luckily, I don't get diarrhea, fever just nausea. That's a pretty scary bacteria. I went to a local hospital a few years back, was admitted. I was so freaked out I wore my jeans, socks( took off boots and spurs), blouse and used my sweatshirt around my neck so the sheets wouldn't touch me. I'm the same in a hotel. Thanks, WWW !!
C.diff is seen on occasion in CLL patients after heavy use of antibiotics. Thankfully fecal transplant are very effective in chronic situations with over a 90% cure rate. A new fecal pill has just been developed by doctors at The University of Calgary, as well as synthetic bacterial transplant material, called 'Repoopulate' at the University of Guelph...
Not sure why Canada is on the cutting edge of this, but we appear to be...
C.Diff is very serious, I have lost CLL friends to it over the years, and while fecal transplants are 'icky' they save lives...
This article was just published today about the use of frozen fecal material, used in transplants...
wow, I never would have guested this was a therapy for any disease. very interesting and I didn't realize so many patients and so many CLL patients are getting life threatening ill ! so, is this similar to pre and pro biotics? Thank you for enlightening me to this bacteria !!! and I got a chuckle at the synthetic bacterial transplant material's name !
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very high WBC
Puzzled
Not Tcell Leukemia but CLL 
Out of Remission
Recommendation...chemo
