Have you or a loved one been diagnosed with CLL? Take advantage of the information and resources at our leukemia forum. Join CancerCompass.com to research treatment methods and more. http://www.cancercompass.com/message-board/cancers/leukemia/leukemia-(cll)/1,0,119,7,50.htm Tue, 24 Nov 2009 00:00:00 GMT Tue, 24 Nov 2009 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My mother was diagnosed with CLL about 4 years ago.  She has been to so many specialists, and all of them say she has a very unusual case:She has an elevated white blood count, but no enlarged lymph nodes.  However, every now and then, she gets very ill with fever, lack of appetite, and no energy.  When the doctors analyze her blood during the sickness "episodes," the white blood count goes down to normal range, as if she didn't have CLL at all.  But, as soon as my mother recovers from the episode, (usually within 4-6 days), her white blood count shoots back up.I am tired of hearing how "unusual" and "perplexing" my Mom's case is.  What is different about my mother as compared to all other CLL situations?Currently, my mother is going through another sickness episode.  At the moment, her spleen is enlarged, but still no lymph node enlargement.  However, since she is sick, her white blood count has gone down to normal range.Can anyone offer me any information that could potentially help me understand what is going on with my Mom?      Every four weeks she received gamma globulin infusions.However, every now and then she gets very ill with the same symptoms every time.is currently ungoing gamma globulin infusions http://www.cancercompass.com/message-board/message/all,40414,0.htm loriwe Mon, 05 Oct 2009 00:00:00 GMT Hi,My mom is 80 years old and she was diagnosed with CLL more than two years back. She is being treated with Leukron (Chlorambucil) since last october (2008). She has gone for 7 cycles now. Her total blood count which was 255,000 before starting the treatment now stands at 30,500. There are some lymph nodes also. Doctor is suggesting to change the drug as Leukron is not helping any more. He is suggesting to go for another drug called Bendamustine now. Could some one please tell me if anyone has been given this drug and what has been results. As my mom is 80 years old, is it advisable to go for this treatment?Thanks  http://www.cancercompass.com/message-board/message/all,39323,0.htm Shashikanth Wed, 26 Aug 2009 00:00:00 GMT Hi All! My dad was first diagnosed with CLL Dec. 2007. At that time his WBC was around 23. He had 6 lymph nodes in the neck, inguinal and armpits and swollen spleen. His WBC had been no higher than 23 for a year. In the last six months, WBC had been increasing continuously. Here were the counts from the last few test results: 6/2/09, 23.9; 6/29/09, 25.3; 07/06/09, 22.7; 07/13/09, 23.5; 07/23/09 26.6; 08/10/09 29.9. There are some abnormal numbers in his blood test: PLT 94; PCT 0.05; MPV 5.8; PDW 18.3; LY% 82.7; GR% 12.6; LY 22; MO 1.3; GR 3.3. In his serum sample, there are some numbers that dont look right either. TP1 80.8; GLB 36.6; A/G 1.21; ALP 52; HDL-C 0.77. Could someone please provide some insight on these numbers? Does he need treatment now? My dad is 66. He has heart problem, 2 heart stents. Thanks so much! Kathleen http://www.cancercompass.com/message-board/message/all,39130,0.htm kathleenyz Tue, 18 Aug 2009 00:00:00 GMT After Treatment of ChemoIf you are like me after your treatment with chemo your stomach and Gastro Intestinal Tract (GI) is uncomfortable to say the least. A major effect of complications after chemo is the inflamed tissue due to the fact that the mucus membrane lining is sloughed off the GI, as the doctors put it. The mucus membrane protects us from foreign bacteria and virus, once sloughed off there is no protection and inflammation immediately is the result leaving this tissue susceptible to invasion of bacteria and viruses.Your oncologist will prescribe antibiotics and anti viral drugs as a prophylactic to guard against foreign bugs. If you take these drugs there will be side effects which in part will be the difficulty of becoming resistant to these drugs thus making it necessary to take stronger antibiotics and anti viral meds when actually needed.There is a study: http://www.clltopics.org/BMT/GVHDDevelopments.htm which reads that the mucus can be reestablished very quickly using a human friendly bacteria known as Lactobacillus Ramosus GG (LBR).Recently I have had another series of chemo with the resulting mucus sloughing problem, I did not use the prescribed prophylactic drugs but used the LBR. Within 10 hours of taking the LBR cultivated into a yogurt my GI settled down and within 24 hours my normal regularity returned. It has been one week now and all discomfort has vanished.You cannot take the antibiotics and LBR together as the antibiotic will cancel the effect of the LBR.If you are interested in using LBR you will need a large dosage of the product in its capsule form. You may wish to cultivate the LBR by making it into a tasty yogurt. If you wish to do this it will be less costly then taking large amounts of the commercially prepared LBR and in my case I feel yogurt is more effective.You may purchase a yogurt maker and use the instructions provided with the maker, your “Starter” will be the LBR one capsule per 8 oz. container, cut open the capsule and mix it into the warm milk. I use organic reduced fat Horizon brand milk (no hormones, antibiotics) along with one heaping teaspoon of Meyenberrg brand powdered goat milk per 8 oz cup which gives a creamy and tasty effect. Do not add any sugars, fruits etc.The source for the LBR is, get this, Wal Mart! It is sold under the name Culturelle Probioticcompany telephone # 1-800-722-3476 if you cannot find it there.As a side bar I have never had any nausua associated with chemotherapy, nor diarrhea or any of the other side effects other then low blood counts, fatigue and hair loss. Therefore I cannot attest to the efficacy of LBR in relieving nausua but I would like to know if any of you who have had nausea and diarrhea after chemo and who are taking the LBR find that these side effects of chemo have ceased or at least been effected in positive way after using LBR.Be well,Roger W.--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- http://www.cancercompass.com/message-board/message/all,39034,0.htm Roger_091 Sat, 15 Aug 2009 00:00:00 GMT My mom was diagnosed with CLL in June 2009. Her doctor told her that her's is different because it is acting like acute leukemia, only more aggressive.  She is 83 years old and has elected not to do chemo.  She had one blood transfusion, but it didn't help.  My mom developed a cough and it was determined that she has a upper respiratory infection, so she is on antibiotics.  This morning she woke up with horrible pain in her back end with pain radiating down her legs.  Is this also a sign of  this disease?  I am with Carol in saying that it is so hard watching my mom get weaker and weaker.  Her white blood cell count in up to 28.99.  At the end of May, her white blood cell count was only 9.Would someone with any knowledge or experience as to what we can expect please respond to this message.  I know that my mom will be going to heaven, I just to try my best to comfort her.  I truly believe that if I have some knowledge as to what to possibly expect, maybe I can reassure her. Thank you and God bless all of you who either have gone through this or who are going through this. Mary  http://www.cancercompass.com/message-board/message/all,38670,0.htm out_of_town Mon, 03 Aug 2009 00:00:00 GMT Completed the FCR treatment for CLL in Jan of this year.  Since Feb or March I have had these small bumps appear randomly on my legs back buttocks and arms - they do itch but not as bad as poison ivy.  Has anyone else experienced this? http://www.cancercompass.com/message-board/message/all,38675,0.htm terkar Mon, 03 Aug 2009 00:00:00 GMT I have 150 IGg count, very  low. Normal low should be 700. Anyone have ideas on how to improve this count? My cancer doctor wants me to have IV drip of gamaguard.This product comes from pools of human blood.I have read that I could be exposed to other related blood problems. I do understand this blood has been clened, but !!!!!!  Even as my wbc is 81,000 ,I feel great.   http://www.cancercompass.com/message-board/message/all,38589,0.htm ENDMILL Thu, 30 Jul 2009 00:00:00 GMT My husband was dx in 2003 with atypical CLL. Although his wbc has been progressing steadily, he was asymptomatic and on W&W. About a month ago, he developed severe pain in his upper left quadrant that sent us to the ER. The CT scan revealed an extremely enlarged spleen (19cm) with multiple lesions. His LDH levels were very elevated.The onc. from Sloan-Kettering ordered a PET scan. Unfortunately his spleen was "lighting up" and therefore suggestive of a Richter's transformation. The onc. felt a biopsy to confirm Richter's was too dangerous given the size of the spleen and he wanted him to begin R-CHOP immediately. My husband is 56, never treated for the CLL, and is now responding very well to the R-CHOP. His spleen is now almost normal in size and all other blood work is completely normal. The onc. wants another PET scan done two days before the 5th treatment and then discuss post treatment options.I was wondering if anyone else has been treated for a Richter's transformation? Were you treated previously for your CLL prior to the transformation? What treatment did you receive for the Richter's? Was an autologous stem cell transplant recommended after the first remission or after relapse?Thank you for any help offered.Stella & Peter http://www.cancercompass.com/message-board/message/all,37603,0.htm stillstanding Mon, 29 Jun 2009 00:00:00 GMT Just recently got diagnosed with CLL.  WBC 80,000.  Night sweats are miserable, but having day sweats also.  Is that normal http://www.cancercompass.com/message-board/message/all,37086,0.htm poohbear1104 Fri, 12 Jun 2009 00:00:00 GMT Then came Large Bcell Lymphoma, and then came Hodgkins.  My mother is a young 75 yr old women.  She was first diagnosed with CLL approx 12 years ago.  Her battle with chemo treatments started approximately 8 years ago, first with a pill, then the chemo IV, and various other.  Approx 3 years ago she was diagnosed with Large B-Cell Lymphoma, and then approximately a month afterwards, with Hodgkins.  She has had quite the battle, and doing very well at times. However, within the past 6 months I have watched her continually go downhill with her health.  (Oh, I forgot to mention, she had open heart surgery a year ago to replace a heart valve).  The chemo treatments have been very hard on her, especially vincristine, which started to effect her liver and kidneys.  Then the doctors attempted IV of Rituxan, which made her have many side effects, so this was stopped.  I was told there was a window of prognosis of 1 to 2 months for her, more probably less than 2 months.  In the meantime, we have been sent to another doctor for a 2nd opinion, to which he has performed a bone marrow biopsy, (which she NEVER had at any point of her diagnosis), and another pet scan.  Bone marrow came back with 40% CLL.  Pet scan showed inflamation in the colon/intestines -- colonoscopy performed, pinhead like ulcers are all over her colon, so a biopsy was taken.  The new doctor has indicated he may be able to come up with another chemo treatment for her. If this can extend her prognosis, and give her quality of life, I say go for it.  But I care for her daily, and watch her suffer with a little bit of pain, as well as she tends to run low grade fevers, her BP is low, to which she is given IV to hydrate her, her potassium is low, so she is supplemented, and she does not much of an appetite, and when she does eat, food tends to go right through her.  She is beginning to loose approx 5-10 lbs a week.  She was very week, and at one point, approximately 2 weeks ago, I was home alone with her, and feared she would not make it through the weekend.  But, thank god she did.  She does sleep alot, but as of lately, has been a bit more awake.  She is somewhat weak, so if I do take her out, she is in a wheel chair now, and when we go to appointments, she is in a wheelchair as well.  She does have occasional bowel mishaps, but this also seems to have improved.Is it common for someone to have prognosis like this, and then suddenly appear to be getting somewhat better?  I realize I need to talk to the doctor about this, but it gets my hopes up, only to get knocked back down again.  I do realize, I can only take one day a time, and be grateful for each day we all have left with her.  I hate to see her suffer at times.  She also does not want to know her prognosis, which I am pretty sure she is aware of what is happening.      http://www.cancercompass.com/message-board/message/all,37022,0.htm momsgirl_1 Wed, 10 Jun 2009 00:00:00 GMT I have had CLL for 10 years and my WBC just went up from 145,000 to 205,000. The doctor mentioned  that if everything was staying the same, (as far as lymph nodes and swelling of the spleen) that I would not need treatment.  I am concerned that when I go back to him this week for my immuneglobin that he will recommend treatment, would it be a pill or iv chemo?  If anyone has any info about this, or has been through this, please answer this. The doctor mentioned a pill in the beginning.  But now I am not so sure.bonnie http://www.cancercompass.com/message-board/message/all,36865,0.htm Bonnie3 Sat, 06 Jun 2009 00:00:00 GMT To All,GlaxoSmithKline PLC and its development partner Genmab came one step closer Friday to gaining approval on their cancer treatment Arzerra after an advisory panel recommended the Food and Drug Administration approve the therapy. Just read this off MSN. Passing it on.Damon http://www.cancercompass.com/message-board/message/all,36640,0.htm Heritage_Softail Fri, 29 May 2009 00:00:00 GMT Last Dec I was diagnosed with CLL  What a shock!!  My Doctor a few days prior told me how great I was doing and to keep it up. I have always been very healthy, selecting salad over french fries, did yoga, walked and whatever I could to stay healthy.  Coming from a mother that will be celebrating her 98th birthday and having many, many family member living into their 90's needless to say I was in shock!!  I took me a good 6 month to finally come to terms with this condition.  Stress was terible, causing a back problem that kept me in bed for nearly a month with 3 sessions of PT.  Finally, I came to deal with all that had happened over the last 6months. I won't go into all the details.But, I want to say once I accepted that, yes, I have Cancer (still hard to say) things began to look up. Some people say Cancer is a gift, well,  I am also one of those people.  My life and attitude has become so much more precious.  No time for anything but the best thought and actions.Medically, I am doing very well Doctor said see you in 1 year. Some people want to know everything, not me.   In the beginning I spend way to many hours on the Internet and I am sure reading stuff I did not understand and greatly increased my anxiety.I Trust my Doctor when he tells me this will be around a long time although there are no guarantee's, but, there are NO guarantee's on anything.  My Faith had a huge part in bringing me to where I am now. At Peace!God Bless, Joni   r http://www.cancercompass.com/message-board/message/all,36274,0.htm jonismile Mon, 18 May 2009 00:00:00 GMT My husband was diagnosed with CLL about 8 or 9 years ago after a routine blood test.  He has seen his oncologist every 6 months and there has been no change. A few weeks ago, he developed a cough which got progressively worse and he saw his primary doctor who prescribed medications and ordered a chest xray and blood test.  The xray was ok but the blood test came back with a 56,000 white count.  Every time he has seen the oncologist, his white count has stayed around 20-22,000. He is very tired and the cough isn't getting much better.  He has an appointment with the oncologist Monday morning and I'm concerned that it's the CLL that is causing the problems.He's 78 and has diabetes, prostate cancer which has been under control after seeding and had a stent put in last summer.   I haven't told him I'm concerned about the CLL. I don't want to borrow trouble but I am worried. The strange thing is that I developed a cough about two weeks ago but it seems to be getting better very slowly on its own.I guess I just needed to vent but would appreciate as much information as I can get.  Thanks  Barbara http://www.cancercompass.com/message-board/message/all,36201,0.htm needlelady Sat, 16 May 2009 00:00:00 GMT http://wrongdiagnose-cancer.blogspot.com/ My friend has very difficult situation with his blood test results and he doesn’t know what to do and how to react on this. Please leave your suggestions inside the blog, so he can get helpful devise from you. http://www.cancercompass.com/message-board/message/all,36121,0.htm Dim21 Wed, 13 May 2009 00:00:00 GMT Hi, I would like to hear from anyone who has discovered they have a loss of chromosome 17 and underwent or is about to undergo a bone marrow transplant. I have been diagnosed with this worst possible outcome and my prognosis seems grim according to the literature. Please write to me personally or through the private message if you have had this experience. I am looking for some company and information. Thanks. Feel free to write to --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- . I hope to hear from someone as I feel desperate. http://www.cancercompass.com/message-board/message/all,34827,0.htm marcic Wed, 01 Apr 2009 00:00:00 GMT Hello everyone,My husband was just diagnosed by his family doctor through a blood test. His white cell count came back 19.000, and he checked the last exam in nov. 2007 and it was 16.000 ( back then that did not raise any red flags. It was a different doctor). The exam came back suggesting CLL and he is going in with a hematologist for more tests soon. He was told it was possibly "stage 0" and that he could be in the watch and wait stage for many years.I would like to know if there is anything I could do to help. Is there anything he should/should not eat?  Is there a way to change this count by what he eats? Is it the white cell count that matters? Should he take supplements? Iron maybe? He already takes " one a day" daily, has been doing that for many years actually... I also read about grapeseed oil in your diet, is it true that it helps???? He looks, feels and is very healthy. No nodes, no fatigue, nothing. He jogs every other day, he is 45. He eats OK but we both decided we should improve his diet, we just don't know how. Please help by answering all my questions if you can, thanks immensely.Take care, my best to you all.Claudia    http://www.cancercompass.com/message-board/message/all,34348,0.htm momof2_1 Wed, 18 Mar 2009 00:00:00 GMT This is a copy of a reply to another posting here in the CLL forum. I thought I should also add it as a new discussion too.  Why not right? After reading this I would love to know if anyone here has tried some or all of the things I wrote about in the e-mail below. I am always interested in hearing about other peoples experiences especially when I hear it directly from fellow CLL patients themselves. Hi Lisa, Sorry it's been so long since you posted your question. I have kind of been sticking my head in the sand lately but now have snapped out of it. Yea! I have major sugar cravings. I love me some desert and chocolate for sure. I have always been a desert girl. Skip the meal lets have desert. Yeah unfortunatly cancer loves sugar. I struggle with this a lot. When I feel down I want comfort and that is inproper foods and lifestyle. Recently I jumped back on the proactive wagon so to speak. I  have mentioned how awesome my Oncologist is and I trust him completely. I also know that there are measures I should take myself to give myself the best situation possible. I just wan't quite ready to commit.Several years ago a very good friend told me of an Integrative / Aternative Medicine Dr she has been friends with for years. He treated her mothers pancreatic cancer along with her oncologist at Sloan Kettering. This was a very long time ago. Her mother was given less than 6mos. She had more than 5 yrs with good quality of life thanks to her Dr's. My friend gave me his number but some how I never was ready to call him till recently. I looked him up on the web.  I was supprised to see how accomplished he really was. Top in his field. He was also a cancer survivor himself. This was the deciding factor for me finally calling him. I would love to give you his name but I am not sure we are allowed to do that here on the message boards. Any way I am only stating all this to show that this info comes from a very very very good source.When I spoke to him he laid out exactly what a person with CLL could be doing to be proactive. This Is what he said.1) Get a good juicer. Make Beet and Carrot juice. Dirnk 3 times daily. Get organic beets and carrots if not organic then peel them. ( I add an apple too)2) Research Methyl Jasmonate. It is exspensive but it is speciically beneficial to CLL patients.3) (this part put me off the most) Coffee Enemas daily 2-3 times. The coffee has to be brewed in an glass percolator or stainless steel. No plastic parts to touch the brewing of the coffee.4) No dairy at all! Not feta,not skim milk, nada nothing! This Dr. does not gain financially from anything I listed above. He is not vested in anything I listed above either. He did not charge me for his time. He offered to colaborate with my Oncologist and said he would call me in a couple weeks. I thought all this couldn't hurt and it possibly will help so what do I have to loose right? It has been 1 week and I can tell you I have more energy, before I had almost none. I don't see my Oncologist again till the end of April. I will let you know if there is any difference.If you are interested there are a few other things I have learned lately thru talking to people while in the waiting room at my oncologist office. One is castor oil packs. They are excellent in helping lymph function, liver, spleen and it really helps keep a strong immune system etc...Who knew? Taking up Rebounding (mini trampolione) is supposed to be the most beneficial form of exercise for lymph flow and health.All this sounds like I am some sort of health freak but trust me I am not. This does not come naturally for me at all. I like my wine, pizza, deserts and can couch potato with the best of em. I have to admit that I have not cut dairy completely out. Geez Rome wasn't built in a day. Whew what a mouth full all that was. Sorry to drag on and on I am just really excited to share all the things I have learned recently. I'm no Dr. I am just telling you what I am trying and what is working for me. Hey if you want to talk more just e-mail me direct --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- Take careBecky http://www.cancercompass.com/message-board/message/all,33844,0.htm Bat6302 Wed, 04 Mar 2009 00:00:00 GMT My husband was diagnosed with CLL about 4 years ago.  Has pretty much stayed under the radar having monthly (now every 3 wks)  IVIG treatments for the past two years and two rounds of luekeran which brought the wbc down but reeked havoc with platelets.  Now he has to start campath next week, 3x week for 12 weeks.  His last bone marrow biopsy showed 97% of cells being bad.  My question is - what are the down sides of campath ?  The doctors are making it seem like it won't be that bad of a treatment - and will do him a lot of good.  I know there has to be more to it than that....Thanks! http://www.cancercompass.com/message-board/message/all,33410,0.htm AnnMaria Sat, 21 Feb 2009 00:00:00 GMT Hello, I am a 38 year old husband and father of three and have been recently diagnosed with T-Cell LGL Lymphocytic Leukimia. I have an initial appointment scheduled at the Dana-Farber Cancer Institute next week and would like to hear from someone that might know what I should expect. Any input would be greatly appreciated. http://www.cancercompass.com/message-board/message/all,33416,0.htm JerryM Sat, 21 Feb 2009 00:00:00 GMT I am trying to contact CLL patients who have undergone FCR chemo treatment.  Or CLL patients who are going to undergo FCR.   Thank you.Fuente http://www.cancercompass.com/message-board/message/all,32602,0.htm Fuente Wed, 28 Jan 2009 00:00:00 GMT I have taken Retuxan once by itself because my white count was to low to take Chemo. What will this do for me? Does it raise the white count? http://www.cancercompass.com/message-board/message/all,31831,0.htm johnbrown Mon, 05 Jan 2009 00:00:00 GMT Hi,Is anybody here was treated by Campath.My friend is in bad shape and waiting for it.I`ll be gratefull for any info.Thanks http://www.cancercompass.com/message-board/message/all,30173,0.htm barbados Tue, 11 Nov 2008 00:00:00 GMT Hi...I am an African American sixty year old man.  I  have been symphomatic of this disease for at least ten years.  In february of this year I was DX with T-cell LGL.  I have had night sweats, fatigue and dizziness.  I seem to be doing o'kay at this time.  Right now my major concern is what do I have to look forward to my body going through with this disease.  I don't know anyone else with this particular leukemia.  My Dr. is also telling me that African Americans usually have a relatively good prognosis with T-cell LGL.  http://www.cancercompass.com/message-board/message/all,29169,0.htm Deac1 Fri, 10 Oct 2008 00:00:00 GMT A friend of mine suffering from CLL has got a fever for almost 3 months.Has been in hospital, nothing better.He started chemotherapy 2 months ago but did not continue due to his bad condition fever infections headaches.Is that normal symptoms of CLL.What is going to happen to him next.I really worry about him.Please help me to know more about it. http://www.cancercompass.com/message-board/message/all,29070,0.htm barbados Wed, 08 Oct 2008 00:00:00 GMT