Sharing Our Stories

[Guest guest]

Hello . I didn't finish my story about my son, I noticed. I am sorry! My

other support group doesn't know about my son and that's why I didn't

finish it.

After going to many different Drs. to find reasons .. why .. NOTHING

came up. Well, dh and I decided to wait to ttc ... between being scarred

and not knowing if ever we can have a baby ... and ended up (Deciding

not to use cover ups .. we knew we would get pg sooner or later) pg

without ttc 4 months later. I was NOT NICE to these Drs. and I bugged

them every week and got a u/s done every week and a special u/s to check

the cord flow called " Doppler flow " ... and all this ended up being

induced at 37 weeks and 20 hours of labor ... and ended up a c sec ..

cuz he was huge. We have our MIRACLE son, Jonathyn. He was born March

13, 2003 @ 37 weeks. He was almost 10 lbs. We recently found out that

our son does have some problems and needs therapy for a few things.

Jonathyn was recently diagnosed around age 18-19 months of Mild Autism.

He doesn't talk at all, except two words and they don't have any meaning

to them. Ma Ma and Ba Ba. No he doesn't have a bottle, he hasn't had one

since 14 months. I have posted recently so I think most people will know

the rest of my story.

Thanks For Reading, and Hope To Read More Stories.

- TM (Hoping & Praying To Be Pg Soon & For A Little Girl)

DH ; Married 5 years and Still Going Strong

Proud Parents Of:

DS; Jonathyn b/ 03-13-03 @ 37 wks Our Miracle

<file://www.babiesonline.com/babies/j/jonathyn>

www.babiesonline.com/babies/j/jonathyn

DD; Kaitlyn b/s 03-21-02 @ 38 wks (Hypercoiled Cord)

Angel; M/C 01-30-01 @ 9 wks (D & C)

DD; Shirley Marie b/s 06-07-00 @ 24 wks (Hypercoiled Cord)

Mommy & Daddy, LOVES & MISSES their Girls! ^I^ ^I^

" I know God won't give me anything I can't handle

I just wish he didn't trust me so much "

-Mother

" A moment in my arms, forever in my heart "

" Always Loved and Never Forgotten "

When You Lose A Parent You Lose You Past

When You Lose A Spouse You Lose Your Present

When You Lose A Child You Lose Your Future

[Guest guest]

Hi All,

I have had CLL/SLL since 1996 and did go through FR and

Benedryl in 2002. I had almost 9 yeas treatment free and

only now am I getting FCR. I did need two pints of blood

since my HGB went down to 7.5. My Onc/Hem tried Treanda but

I was highly allergic to it. I got a real extensive rash.

Now I am feeling tired and will be getting another shot of

Procrit this Thursday.

Well, I have enjoyed my eight grandchildren during this

time.

I did catch a lot of viruses during my first time. Hoping

for the best. We have to keep fighting!

Joan

[Guest guest]

Wow, , thanks so much for sharing your story. I was

diagnosed with SLL/CLL in January this year. I was

diagnosed by an ENT because my adenoids, tonsils and

whatever other kind of lymphoid tissue is in my throat

became very enlarged, enough to compromise my airway and

cause sleep apnea/heart arrhythmias. My PCP had been

treating my sore throat for over a year with Flonase and

Claritin, etc. with no relief. Never in this time did I get

a CBC. Since then I have had radiation to my throat (I got a

2nd and 3rd opinion for radiation from Stanford) and this

was supposed to reduce and even stop this swelling from

returning. I developed severe mouth ulceration during and

after my last dose of radiation and ended up in ER. Couldn't

taste a thing for 6 weeks. The radiation oncologist just

informed me yesterday that it didn't work very well and I

can actually see and feel the swelling returning. My blood

at this time is not too bad. I do have some undesirable

markers. I am unmutated with a atypical translocation of

chromosomes 10 and 14, no deletions found. I see my

oncologist this Friday for my next step. My main life goal

right now is to go to my son's wedding in May 2012. Your

stories and this list has really helped me know that this is

possible. I am indebted...very inspiring.

Peggy

[Guest guest]

Hi --

I was diagnosed with SLL/CLL in 2007 at the age of 54 and

was on watch an wait until the fall of 2009 when the lymph

nodes in my neck and chest grew to a point that my

oncologist decided treatment was warranted. I completed six

cycles of FCR with no problems, and a CT-scan showed my

lymph nodes had responded to the treatment and were reduced

significantly.

Less than a year after the completion of the FCR treatments,

my lymph nodes started growing again so my doctor had one of

them excised and FISH tested. Seems that somewhere along the

line, I developed the not-so-great 17p deletion which, of

course, made the FCR standard treatment ineffective.

Now I'm on four cycles of high-dose steroids plus Rituxan

and am scheduled for a stem cell transplant in mid-August.

Fortunately, my brother is an exact match and will be my

donor. Despite the possible complications that go along with

this procedure, I'm going into it with a positive attitude

and hope for a disease-free (or at least relatively good-

quality) future.

I appreciate everyone else's stories. Thank you.

Debbie

[Guest guest]

Hi Debbie,

I am curious, did you have a fish test prior to treatment? I

just finished treatment with Treanda and am trying to figure

out what changes I need to be aware of that may or maynot

happen. Wishing you a successful stem cell transplant.

Debbie wrote:

/message/15460

[Guest guest]

Hi, I am most likely the only caregiver here. I am the

researcher in the family....

My husband, Tom, was dx in late 2004 by a node biopsy in his

neck. He had been sick with upper respiratory infections on

and off for 8 months. He thought his shirt size went from a

15 1/2 to an 18 due to working out with weights. (Yes,

that's how stupid we were). He had a CT Scan and lit up like

a Christmas Tree...... He had just turned 50 at dx.

Started seeing Dr. Keating at MD and was treated

immediately as one of the 300 trial rats for FCR/frontline

treatment. He was unmutated using the VH3.11 gene, Zap 70+

and CD38- with no deletions or karotype abnormalities. His

BMB showed abnormal CLL/SLL. Tom got a partial/nodular

remission with FCR. (If it wasn't for MRD, Dr. Keating said

he would have been a CR). Had a hard year following FCR

with constant vomiting and no one ever figured out what that

was. The next year was the best one. After 2 yrs plus a

few months, Tom began relapsing. All 3 areas of lymph

involvement swelling but not at a super fast rate. Dr.

Keating did W & W until Tom's fatigue and blood counts were

consistent with his large lymph nodes. Turning his neck

became difficult.

Next treatment was Solumedrol/Rituximab. That was weekly

and then monthly for around a year. Rituximab stopped

working and Tom began showing an allergy to it. Bad flu

like symptoms for a week after infusion with a chest cough

starting immediately after infusion.

BMB shows double allele 13q deletion and 17p deletion along

with P 53 deletion--(only 17%) Abnormal Karotype --CD38

is now positive at 70%.

Started the Revlimid trial for relapsed patient's at MD

. Perhaps one of the few patient's who have not done

well on Revlimid. After 10 months, taken off trial because

of progressive disease and a horrible allergy to it which

showed up in a nasty rash that stayed with him for the

duration of treatment. His treatment was interrupted quite

a few times due to allergic reactions. He worked thoughout

this treatment but the overall fatigue from Revlimid was

always there. He didn't realize how bad it was until he was

off Revlimid. Some of his energy did return after Revlimid.

BMB shows more CLL in marrow but all deletions are now

gone???? Still CD38+

Referred to Stem Cell Specialist at MD 2 years ago.

After many visits and discussions on Tom's particular CLL,

we have declined that route.

More Rituximab/solumedrol for a few months.

Started PCI trial at MD and is now still on trial.

Had to quit daily pills on Easter Sunday of this year due to

a high fever. Within 3 days his lymph glands were HUGE

again. Restarted PCI and they have melted away again. It

is an amazing inhibitor and I am positive that these type

meds when synergized with another drug will be the possible

Cure for CLL. He does has a rash that Keating believes is

due to PCI, but it is nothing comparable to the Revlimid

rash.

Quality of Life is fantastic on PCI----works full time,

plays golf, still battles fatigue and herpes on face and

petichea and bruising. Hoping to be able to be on the next

trial at MD when this one is over.

I am thinking that perhaps these inhibitor's can work on CLL

like insulin on diabetes.....any input on that thought????

I wonder what you think about that statement, Dr. Hamblin.

Lou

[Guest guest]

I am a caregiver/patient advocate also. I am the one who

does all the research for my husband and my mother-in-law.

was diagnosed in June 2007. n (his mom) was

diagnosed in January 2008. Both after routine bloodwork. But

had been noticing some lymph node swelling that was of

concern to him. He kept that from me until he'd had two

blood tests that showed high white counts.

We were referred to a local hematologist for confirmation of

diagnosis. I knew right away that doctor was not the one I

wanted for my husband. He was arrogant and flippant and was

ready to start immediately on FCR before he even found

out mutation status. He was just cavalier about it, which

bothered me. I had done a lot of reading and knew that FCR

should not be rushed into. And I had learned how important

it was to know all of your markers before making any

treatment decisions. We made an appt. to see Dr. Zent at

Mayo in July. But before the appt., I found out we had a CLL

specialist nearby in Nashville (about 40 minutes from our

home). He had recently taken a position at Cannon

Research Institute of Centennial Hospital (coming from s

Hopkins). We went ahead and had a thorough evaluation with

Dr. Zent at Mayo and mentioned Dr. Flinn. I was so happy

that he reiterated to my husband everything I had been

saying to him about the importance of seeing a specialist.

He told that if we had a specialist within an hour of

our home, there was no reason to consider going to anyone

else and he gave Dr. Flinn a big thumbs up. If not for my

insistence and Dr. Zent's confirmation of how important that

was, I truly believe my husband would have just gone to the

most convenient doctor available to him as far as location

(so he could miss fewer hours of work). I told him it was

not a decision that should be made based on convenience. And

after our visit with Dr. Zent, he understood better why I

was so insistent.

From the beginning, 's most troublesome issue was his

lymph nodes. They just flared constantly and got huge. They

were uncomfortable and he hated the way he looked. His neck

was huge. And he normally has a very thin neck. They got so

big in his groin that walking was uncomfortable and

sometimes even painful. They were growing everywhere. But

his blood wasn't that bad. And after BMB, he had only 30%

bone marrow infiltration. Fatigue has always been a

complaint, but not debilitating fatigue. He works six days a

week. He's up early every morning, but is " spent " by

afternoon and falls asleep easily if he tries to sit and

watch tv in the evening.

He is unmutated, 13q deletion, CD38+ and Zap70 -. All good

markers except his mutation status.

We tried Rituxan as single agent first (2008). Very little

short term reduction of lymph nodes from that treatment. He

had eight total infusions. For the next year he avoided more

treatment by using prednisone off and on. But that made his

white count rise and Dr. Flinn let him know that he was not

in favor of steroid use as this just masked his symptoms and

would ultimately create other unwanted side effects. (

got prednisone from his PCP and then told Dr. Flinn he had

taken it. Dr. Flinn always objected, but never got upset

with . He allowed to make this choice with

caution.) In late 2009 decided to have FCR with

Lumiliximab (trial drug) and finished that in January 2010.

His blood responded but his lymph nodes did not. And since

the nodes were the reason for treatment, FCR was a total

failure for him. No remission at all. The nodes were

reduced, but they started growing again within two months of

the last infusion. Transplant was on the table.

At this same time, I was reading about encouraging and

hopeful results from a new study drug called CAL-101. And I

convinced that he needed to try it before considering

transplant. I was ready to travel if we couldn't do CAL-101

single agent with Dr. Flinn. I even called and set up an

appt. with Dr. Byrd in Ohio. But when we consulted with Dr.

Flinn at 's next office visit and I shared my conviction

that should try CAL-101 first, he said he was

participating in the same trial and would try to get

enrolled. (We were so happy about this because we both love

Dr. Flinn and his entire staff.) Within the next two or

three weeks, was one of the last CLL patients to be

enrolled in the single agent CAL-101 trial for relapsed and

refractory individuals. He began CAL-101 at the lowest dose

of 50 mg. twice daily in May of 2010.

Within days of the first dose, his lymph nodes started

shrinking visibly. It was like a miracle. He did not

experience the spike in white count either.This little pill

morning and night has done what chemotherapy could not do in

his case. Ever since beginning CAL-101, 's CLL has been

completely under control. The nodes disappeared throughout

his body (they are nearly normal size and only measurable by

ct scan). And his blood is normal. The only symptom he still

has is fatigue. But he is working full time and running

three nights a week on the treadmill, having good quality of

life. He was 53 at diagnosis and is now 57. He has

experienced no side effects from CAL-101. And he has not had

any infections or bouts with illness of any kind during or

after treatment with FCR. Fortunately, he tolerated the

chemo very well. It just didn't work for him.

n, his mother, is also taking CAL-101 and responding

very well. She is 78. She did not have the lymph node issues

(just a few swollen nodes like peas, but not bothersome or

noticable). Her white count kept rising and her red counts

kept declining. Her platelets dropped under 100 and she was

slightly anemic. Her bone marrow was 80-90% infiltrated. Dr.

Flinn thought she should not wait until she got much worse

to have some kind of treatment. But she did not want chemo

because of her age and he agreed. He recommended

CAL-101/Rituxan (clinical study for elderly patients who

were untreated). She began that in October of 2010. She did

have a serious bout with pneumonia in January of 2011 and

discontinued CAL-101 for two to three weeks. But she is all

recovered and went back on a reduced dose (started at 150

mg. and is now taking 100 mg.) of the study drug on January

25. At her check-up last week her blood was nearly normal

(still just a little low on HGB and HCT, but 5.8 WBC). Her

few swollen nodes are all reduced and stable. Her BMB

involvement had been reduced to 30% when checked after Cycle

6. She is now in Cycle 11 of treatment with CAL-101 and

doing well.

This is so long. I do apologize. Just don't know how I could

have made it shorter without omitting important info. I keep

a blog and always update their status for family, friends

and CLL patients seeking information. My father also has

CLL. He was diagnosed in 1997. But he has had the very most

benign CLL. No problems other than a steadily rising white

count. We do not even know his markers. I don't think he has

ever had flow cytometry done. He was told at diagnosis that

he would probably die with it, not from it. And since he had

other more serious health issues (Parkinson's), he never

concerned himself much with his CLL. He said that if it

progressed he would not have treatment just so that he could

suffer longer from the Parkinson's. He has never wanted to

see a specialist or learn about CLL. He just has his blood

checked annually by his PCP. He is now 75 and is

unfortunately suffering severe decline from Parkinson's. He

seems much older than my mother-in-law, even though she will

be 79 in October.

I don't speak up real often because this is what happens

when I do. I am too long winded. But I do try to keep up

with my CLL reading when I can. This year has been such a

reprieve from worrying about 's CLL that I have not been

as active in my online forums and lists. I have been

thankful to enjoy a little break from such pressing issues

and having to think about it constantly. But I always stay

current on my blog for anyone who is seeking info.

I appreciate all of you who take the time to share your

experiences. I could not have helped my loved ones to make

such informed decisions without all of you! And I have

always had such appreciation for Dr. Hamblin's willingness

to answer questions and share his knowledge with all of us.

What a wonderful, generous and gracious man he is! ( " Long

live Dr. Hamblin! " )

Thanks for reading (if you still are).

[Guest guest]

Hi All,

I was diagnosed 6/2000 after routine blood work, with wbc of

only 11K at that time. 13q14; CD-38 neg; ZAP-70 neg by Dr

Kipps; unmutated. Never had any fatigue; did lots of

international travel from 2000 till 2007, and only stopped

that d/t having an elderly cat who didn't do well when we

left her! By 2008 had many smallish nodes in neck, marrow

was >90% and developed AIHA with Hg dropping as low as 9.1,

so was on prednisone from 2008-2009. Then reached a point

of having to either increase prednisone or do chemo, so did

FCR from 7/2009 to 12/09. I consulted with Drs Kipps,

Coutre and Zent (at Mayo), and had a wonderful and

knowledgable local onc. Dr Kipps wanted me to do his

R+HDMP, but since I'd have to do it locally, my local onc

refused, saying it was too toxic. (He said he'd had a

patient die from complications of it, and wouldn't give it

to me). That's when I consulted with Dr Zent, and he

suggested I continue with prednisone for as long as

possible, which for me worked great for about eight months.

By then, my marrow was so impacted the pred would need to be

increased. So as I said above, I opted for chemo.

The FCR was no picnic, and for two cycles I had only 2 days

out of 3; the first cycle my WBC dropped too low after day

two; the third cycle I had intractable vomiting and abdominal

pain, with an overnight in the ER, and no way could I face

more chemo the next day. On 4th & 5th cycles we decreased

the doses of F & C by 20% and 10% with cycle six doing the

full doses.

It's now 1 1/2 years after completing FCR and my counts are

great! Hg-14.4; ALC-0.9; platelets remain slightly low at

124K, but not a concern. Life is good! I feel great!

I do not know if I'm in a PCR-neg remission. Funny, but I

was always the type who had to know all the details, the

who-what and why's; must be from my 25 years of hospital

nursing. But I'm also a bit obsessive, and decided that if

I didn't obtain PCR negativity, I'd dwell on it too much.

(Of course, I'd also celebrate it if I was!) But I decided

that for me, ignorance can be bliss, as long as it isn't

detrimental to my health, and took the road of just being

content with periodic CBCs.

There have been great strides in CLL since my diagnosis,

even since I had chemo two years ago. I have high hopes that

it can truly be treated as a chronic disease for me. I don't

think about CLL all that much anymore, after being very

fixated on it for almost an entire decade. The day will most

likely arrive when I'm back in the middle of it, but it's

wonderful to have a breather - and who can know how long it

will last,,, And as trite as it may sound, I do enjoy every

day, and am much more grounded in the present now.

My best to you all. And as always, a sincere thank you in

appreciation to Drs Furman and Hamblin.

Regards,

Marcia in CA

[Guest guest]

Hi ,

I had FISH testing when I was first diagnosed and it showed

no 17p deletion, but I wasn't tested just prior to my FCR

treatment. My guess is that I developed the 17p deletion

BECAUSE of the chemo, but I guess that can never be proven.

Debbie

[Guest guest]

I hope that the inhibitors will act like that, but Gleevec

experience tells us that resistance eventually develops in

some and we will need a selection of inhibitors to overcome

that.

Lou writes:

/message/15462

[Guest guest]

Shari,

What a wonderful post you did !! I appreciate so much all

of the important information and am so pleased that your

loved ones are doing well both with their treatments and

having you as such a thoughtful and intelligent advocate /

caregiver.

Please .. post more often. Those of us who are watching

closely these new pills and combinations are waiting with

baited breath for all the news that's out there. I was

especially interesting in your mother-in-law's response to

the CAL-101+R as I am an " elderly " untreated with BMB at

80-90% infiltration (and very high WBC) so have thought

about that trial, but had no clue as to its impact on BMB.

Do they think the R did all the BMB reduction or could

CAL-101 be working there as well? The impact on BMB has

been the missing measured link so far so this is indeed good

news.

All the best

Lynn

[Guest guest]

Hello,

I was dx. with SLL/CLL at age 47 back in 1998.I had lots of

strange reactions to bug bites with swelling and cellulitis.

I had large abdominal nodes (11 cm) and normal WBC. My first

tx was CHOP and I did very well for 3 years. Then relapsed

in 2001 with nodes again and had FCR. Again I did well with

CT scans every 4 months. Then 2004 developed ITP (platelets

down to 6) Did high dose steroids to no effect and then IVIG

with good results but for only 3 months at a time.

Transplant was recommended so did midi-allo from my sister

in 2005. Doc wanted to do RICE but I switched to another doc

and did F, Busulfan and TBI(total body irradiation).

Developed GVH while in hospital for the transplant and had

gut problems but they resolved. Did ECP (extracorporeal

photophoresis) for 2 years and that helped a lot. Now have

chronic GVH but doing well except for dry eye, skin and

tongue lesions. Also have range of motion problems but yoga

helps that.

Good luck to those of you considering transplant.

Carol in Detroit

[Guest guest]

While a few patients develop 17p deletions " de novo " , from the

start of their disease, most 17p deletions are the result of

chemotherapy and the more resistant clones growing back.

Rick Furman

> I had FISH testing when I was first diagnosed and it showed

> no 17p deletion, but I wasn't tested just prior to my FCR

> treatment. My guess is that I developed the 17p deletion

> BECAUSE of the chemo, but I guess that can never be proven.

[Guest guest]

I am also a care giver for my husband who has atypical CLL.

His brother and two female cousins have also been diagnosed

with CLL, so it appears to be familial in his family. My

husband was diagnosed in 2003 at age 49 with CLL. Based upon

routine annual blood work, his wbc had been steadily rising

for at least 5 years prior to that until it rose above the

normal range. He was diagnosed when it was discovered his

wbc was slightly high (14,000) at the time he was scheduled

for arthroscopic shoulder surgery. This was a shock to us as

he was completely asymptomatic and no one else in the family

was diagnosed at that time.

Initially, he went to a local hematologist/onc. who ran

testing, including a BMB that indicated he may have MCL.

Apparently, he has a translocation of 11/14...t (11;14)

which is the hallmark of MCL. However, he was not cyclin D1

positive which threw his diagnosis into confusion. This

doctor wanted to start treatment immediately because he

believed he had MCL although he was presenting like an early

stage CLL patient.

I then switched my husband's insurance coverage to mine as I

had better coverage while he was limited to an HMO. After

extensive research, we decided to see Dr Zelenetz, who is

the Chief of the Lymphoma Service at Memorial Sloan-

Kettering in NYC. He has expertise in both MCL and CLL. Dr

Zelenetz ran a barrage of tests, and checked them twice

before determining that in his opinion he had an atypical

hybrid form of CLL/MCL. However, in his opinion my husband

was presenting like a CLL patient and therefore recommended

W & W.

My husband was checked every 3 months the first 2 years to

closely monitor the course of his disease. He then graduated

to checkups every 6 months with CT scans yearly. He remained

completely asymptomatic for 6 years although his wbc

continued to rise at a steady pace. In 2009 his wbc was in

the 70,000 range. However, he felt great...no fatigue or

related complaints of any kind.

Completely out of nowhere, literally within a matter of

hours, he felt extremely unwell to the point he needed to go

to the local ER. He had severe abdominal pain, sweats,

extreme weakness, fatigue, nausea, and loss of appetite. A

CT scan revealed a severely enlarged spleen with extremely

suspicious lesions. His LDH levels were also very elevated.

Next day we were at Sloan having a PET scan that lit-up like

a Christmas tree and Dr. Zelenetz diagnosed him with a

Richter's Transformation in his spleen (DLBCL). He

immediately started R-CHOP given at 2 week intervals.

Needless to say, we were terrified at this turn of events

based upon the limited information available about Richter's

Transformations.

Fortunately, my husband handled the R-CHOP relatively well

although he did need to have a Power Port implanted after

developing cellulitis. He had an immediate positive response

and his spleen returned to pre-transformation size which was

slightly enlarged. His blood work became completely within

normal range and there has been no sign of either DLBCL or

the CLL since. (knock wood) We just celebrated his 2 year

remission since the Richter's. We were at Sloan yesterday

and his blood work and CT scan were completely normal.

Statistically, the original DLBCL is less likely to relapse

now that he has reached the 2 year mark. However, another

transformation could occur as we really have no idea why

this happened in the first place as he had no prior history

of treatment.

In the meantime....we live & enjoy our lives!

Stella

[Guest guest]

:

Before we do this, perhaps we could have a Cll basic class

on this site. Define the prognostic indicators, what is the

biology of deletions and mutations that come into play with

Cll. Which ones are to be worried about? Seems I saved

references from a while back but cannot find it now

that I need it.

Thanks,

Marilyn Barbera

BMB done last week shows a transformation in progress to

Richters. There were both Cll cells and Richters. Waiting

for results of flow Cytometry.

[Guest guest]

Hi Marilyn -

What I found most helpful in my " learning the CLL basics "

were these CLL websites

http://www.clltopics.org and

http://cllcanada.ca/2010/index.htm

these are excellent sources for CLL information

An excellent primer with much of the basics about CLL is

http://www.clltopics.org/PI/PrognosisatDiagnosis.htm and

http://www.clltopics.org/Primer.htm

You will find article updates are at

http://updates.clltopics.org/

Note: if you register for the updates@ clltopics.org you can

then read and post to the comments section that's after each

new article. Again, it's a lot of interesting information.

Some of the notable posters here are Dr. Hamblin, from

CLL Canada, and a few doctors (general practice) who

themselves have CLL.

Vankat oversees the CLL Topics websites. She is an

excellent researcher (and writer) and has a special knack of

making medical jargon understandable. Her articles are full

of important CLL info.

Dwyer is runs the outstanding CLL Canada website.

http://cllcanada.ca/2010/index.htm - is absolutely

amazing - one of the best CLL researchers there is.

lymphoma.org/booklets http://tinyurl.com/3hxg3rf - They have

a booklet that is very good - " The Red Book " that explains a

lot about the basics of CLL. You can order free copies or

read it online http://tinyurl.com/42x78za

Note: Both CLL Topics & CLL Canada website (listed above)

have information about Richter's transformation. Go to the

sites and key in " Richter's transformation " in the search

engine on their site.

Good luck - Patti Kruse

[Guest guest]

Hi Marilyn,

General CLL guides can be found here. They are listed in

order of complexity and jargon...

http://www.cancer.net/patient/Cancer+Types/Leukemia+-+Chronic+Lymphocytic+-+CLL

or http://tinyurl.com/2chur62

http://emedicine.medscape.com/article/199313-overview

http://www.mhprofessional.com/content/media/kaus_094%20%281431-1482%29.fm_.pdf

or http://tinyurl.com/3b65qbj

http://www.clinicaloptions.com/inPractice/Oncology/Hematologic_Malignancies/ch40\

_Heme-CLL.aspx

or http://tinyurl.com/4xfcer9 (free registration required)

CLL is a highly complex disease and nearly every patient in

some ways is different.

The prime prognostic indicators are IgHV gene mutation, CD38

percent, staging and lymphocyte doubling time. (LDT)

There are some others that are used and relevant for

clinical trials and are either not available on a clinical

level or have limited relevance...IgHV gene mutation is

often not available outside of clinical trials in most

hospitals.

If you need more specific information please let me know...

~chris

[Guest guest]

Marilyn - My computer won't send my message to you directly.

Be sure to read Stella's post today under Sharing our

Stories. It was a separate post, not part of the thread. Her

husband was treated for Richter's and is doing very well

now. If you can't bring it up email me and I'll find it and

forward it.

Pat

Mod's note from : This is Stella's message:

/message/15485

[Guest guest]

Marilyn,

Go to http://www.cllinfogroup.org and download

an entire booklet called " UNDERSTANDING CLL/SLL "

http://tinyurl.com/3l9kevf -

[Guest guest]

In early 2006 I was experiencing a low grade whole body

flushed feeling with cervical nodes gradually appearing in

several areas around my neck and under my chin. I decided to

see a Doc who DXed me in Sept. '06. A referred general Onc

was very uninformed about CLL and both Docs warned me not to

use the Internet so after searching the Web and finding

's CLLTopics I got a second opinion from a Heme/Onc

transplanter and asked for FISH, IgVH mutation status and

ZAP-70 tests to better characterize what I might be dealing

with.

I received what I thought was relatively good news from the

tests (13q del., IgVH mutated 6% IgVH4-34 and CD38 neg) with

the only bad indicator of ZAP-70 being high at +58%. Being

very active and healthy, I was told I may never need

treatment. I remember saying that the node growth did not

feel indolent to me. In summer of '07, blood testing showed

first indication of impact on kidneys from cancer. I

continued free of " B " symptoms and infections in spite of

steadily rising WBC and lymphadenopathy proliferation which

prompted me to consult a CLL expert. I chose Dr. Byrd

in part because his clinic was drivable in a day but mostly

it was after I heard him lecture at the Canada CLL

Conference in the Spring of '07. He advised W & W in summer of

'08 and in early '09 I decided to enter the CLL Natural

History study Trial at NIH. The CLL expert there advised W & W

though I felt it was " pushing the envelope " because it was

clear to me if not the Doctors that my kidneys were under

increasing threat from the cancer's advance and the tests at

NIH had found micro-blood in my urine. I bailed out of W & W

in June '09 with massive nodes and ALC around 305k but free

of " B " symptom indicators for treatment.

Local Heme/Onc Transplant Doc was fearful of treating me

with RF in a concurrent manner for which existed a study

showing greater efficacy than the sequential delivery of F

first until tumor load could be reduced before giving R. I

wanted the deepest remission so I worked a deal whereby I

would be treated at Byrd's Clinic for the first cycle out of

six and cycles 2 through 6 in Rochester NY. 1st cycle went

exceedingly well but kidney failure followed 2nd cycle,

thought to be caused by F. Good partial remission followed

but with significant (stage 4) renal damage from Acute

Tubular Necrosis.

Partial Remission held until Feb. 2011 when HD-RTX (High

Dose Rituximab monotherapy) was tried which caused severe

reaction (precise mechanism as yet unidentified) which put

me in a wheelchair for a day and resulted in further kidney

damage after only the first week of a four week infusion

protocol. (possible cause may have been Serum Sickness)

In spite of severe reaction to R, the response regarding

tumor retreat was good and although I had a slow recovery,

by May I was feeling pretty good. Lacking any symptoms

begging TX but with more kidney damage, I concluded that the

only way to preserve kidney function was to beat the CLL

Bear back into hibernation with preemptive TX. My only more

or less conventional treatment options were Bendamustine,

Revlimid and Chorambucil. I decided to enter a Kinase

Inhibitor Clinical Trial. After much deliberation between

CAL-101 & PCI and the offering of PCI-32765 single agent at

Byrd's Clinic and where I had developed a trust in 's

knowledge of my situation and his recommendations I signed

up for the PCI-32765 single agent Trial.

I am now preparing to leave Tues. morning to begin the 4th

week of monitoring with PCI-32765 monotherapy. One

interesting unknown is whether the kinase inhibitor will

disrupt the cancer's ability to further impair my kidney

function or whether the rapid mobilization of the cancer

cells out from the nodes and into the peripheral blood will

actually increase renal impairment. The good news is that

past week's blood-work showed a small improvement in

creatinine clearance in spite of the expected rise in WBC as

the nodes empty out the cancer cells into the peripheral

blood.

So far I feel great and have experienced only minor side

effects. My nodes have shrunk where it is difficult to

visually detect any lymphadenopathy and this after only 17

days of three oral PCI capsules.

WWW