I have been on watch and wait for 6 years. Last Nov 2011 my WBC was about 80. Then in Jan, it shot up to 121 and now 171. So I have the doubling factor. Had a CT and I have an enlarged spleen and nodes. Had a bone marrow biopsy and got a poor prognosis. Now it appears I have the 17p deletion which I think is the worst case scenario. CD38 was positive 20% (initial blood work when diagnosed 6 years ago had me at CD38 negative) Now, I am switching my Oncologist to another one I went to before (various reasons) and I have an appt on Monday to see what type of treatment they will give me. Former Dr said FCR but I read that this is not the best treatment for 17p deletion. Can anyone out there with the 17p deletion tell me what kind of treatment they have had and were there any good results? I really don't understand why I had 6 good years with no problems and now all of a sudden I have a missing chromosome and am in the poor prognosis category. Hope to hear from people in this high risk category.
In 2008, I had a CLL treatment that included Alemtuzumab (Campath), Rituximab (Rituxan) and GM-CSF. At that time, the treatment was in a clinical trial for CLL patients that had a high risk for progression. My local hematologist informed me that this combination is now being used as a front line treatment for some people. I had pretty good results with the treatment and the side effects were difficult but manageable. I came close to a complete remission; after treatment I had 30% remaining CLL involvement in my bone marrow (less than 30% indicates a complete remission). The side effects that I experienced included fevers, some where high but I was able to manage all the fevers with Tylenol and Benedryl. I also had significant body aches and fatigue. I was impressed with the Campath; it lowered my lymphocyte count dramatically after the first dose. Is your hematologist going to treat you with just Campath?
Hi Rick, thank you for sharing your treatment info. Yes, on Monday I get Campath. It will be an injection, not an infusion. I will get Campath on M, W, and F. Each time increasing the dose and then the next week will stay at the maximum dose as long as I tolerate it. They said I would have to take Tylenol and Benedryl first, then the shot, then sit for about an hour while they monitor me. I have about 5 other prescriptions I need to start taking on Friday for various things that Campath can cause and also antibiotics. Due to the poor prognosis from the bone marrow biopsy, they said forget the FCR and let's go with Campath. I know about Rituxin but never heard about GM-CSF, I will have to ask about this. I guess after the first week they will know if it is working. I am not looking forward to starting although I do want to get this under control. You had the treatment in 2008 so is the CLL still under control? Good luck to you! I will post my progress after the first week of treatment. Thanks, Karen
After the Campath, Rituxan and GM-CSF treatment, I was in remission for about a year and I didn't need treatment until August 2010. Campath was given to me by subcutaneous injection. I was satisfied with the treatment since I was able to delay my next treatment for 2 years. I had the FCR treatment in 2010. Best of luck to you on your Campath treatment! Let us know how things are going for you.
Hi Rick, not sure but do you have the 17p deletion? I went to a specialist today. I finished Campath so I need another bone marrow biopsy and a PET scan next week to see if or how far I am in remission. This specialist did not give me much hope of doing anything else except a clinical trial going on right now in another state. I am calling them tomorrow to see if I can get in. That is good news that after Campath you were able to delay treatment for 2 more years. They are telling me mine will come back more aggressive with the 17p deletion chromosome. Karen
I was just diagnosed with CLL in Feb/March and have the 17p deletion. My blood tests have been abnormal since this was first found incidentally in October of 2011. I hope I have at least 6 years of hanging out with no progression, but with what I read on the Internet, this may not be likely. My CD38 and Zap-70 are negative, but my doctor says the 17p is the overriding factor. My understanding is that CLL of the 17p deletion type is less responsive to the conventional chemo, which I believe is Fludarabine and Rituxan. There may be one more chemo agent in there, the name of which I do not recall. I did not have a bone marrow biopsy as I believe my doctor thought he had enough with peripheral blood FISH testing and IgVH testing (that also was not a good result, I have the unmutated IgVH), so a double whammy.
So far, I am Stage 0, without swollen lymph nodes or super high lymphocyte count at 15.0 on May 14. My understanding also is that they don't treat Stage 0 as it could make things worse, so when they decide to actually treat, I am not sure. My oncologist says the nature of these cells is to change and mutate, so I guess we shouldn't be surprised when they do. He did say that he has had one patient who lost the 17p, and we can hope and pray for that.
I wish you luck with your treatment and will be very interested to know how that goes. I hope I haven't reiterated information you already know. God knows, you've been living with it longer than I have. I would be interested to know what your symptoms were during all of those six years and how you are feeling now. I will be followed every three months and was told if my lymph nodes began to get large that I wound need to come in.
I was also told that CLL with 17p deletion affects the p53 tumor suppressor sequence, which makes one more vulnerable to other cancers. My oncologist said that some of these transform to a Richter's syndrome, and this would be another thing to be on guard for.
Again, wish you the best. That's my two cents. Would be happy to hear from anyone else here on the forum who has experience with this.
Hi juliac - sorry to hear about your diagnosis. I was on watch and wait for almost 7 years. Last Nov my WBC was about 80 and then in Jan it went to 120, Feb 125, March 171 and now 201. So it doubled quickly. I got a bone marrow biopsy and that is where they found the 17p deletion. I did not know they could find this in bloodwork. My CD38 was negative in the blood work when I had the diagnosis. The bone marrow shows 20% positive now. I am unmutated too. I stayed at stage 0-1 for a long time. Only had nodes beneath my ears and they were very small. But CT scan showed internal swollen nodes and latest scan also showed swollen spleen. So I have to get treatment. My Dr said Campath is the best for 17p deletion. I had my first injection yesterday and it was not painful and I had no side affects. Tomorrow they increase the dosage so I hope I tolerate well again. Over the past 7 years, I can honestly say I had no other symptoms other than the high WBC and some small nodes in the neck area. My WBC would only go up between 1,000-3,000 per month. In the past few months though, I had some bad colds that would not seem to go away quickly. My Onc called a Leukemia specialist and they agreed that Campath would be the best drug for me. I will know how it is doing in the next couple of weeks. The doctors think it will get my WBC down to normal quickly, but you never know when it will start up again. That is interesting that someone could lose the 17p - let's all hope for that! I will post more on my progress when I can. Good luck to you and I hope you remain in stage ZERO forever! Karen
Thanks for getting back to me. I am also especially interested because there aren't too many women on this site with CLL. I am also wondering at what age you were diagnosed and had your seven years of no symptoms. What makes it flare up suddenly? I know this is an unanswerable question. I had not heard of Campath, but looked it up and do recognize it by the generic name. I am sorry you are not feeling well at this point, but at least I have an idea of what I too may be in store for. I am surprised they just do injections and not infusions. I hope the third dose goes okay. It sounds like it progresses, though, from being tolerable to being pretty uncomfortable. Let's just hope and pray it does what it supposed to do. How many more do you have to go?
I was diagnosed with Stage 0 CLL, 17p deletion, at age 56. If I get seven years without having to do anything, that would put me in the 60s at least. Mainly, I just hope they can come up with more satisfactory, curable treatments by that time, such as stem cell injection of autologous blood.
Meanwhile, thanks for keeping me up on your events, and I hope #3 goes okay.
Hi Julie - Day# 3 went OK. Got the shot in my thigh i/o my stomach. #2 in the stomach caused a lot of skin inflamation. #3 in the thigh is just fine! #3 was 30mg, full dose. Got it at about 3pm and came home, felt fine, ate dinner. Then about 7pm I got severe chills, took my temp and it was 101. This drug causes fevers. Took 2 Tylenol (as they tell me to) and in 2 hours temp was 100.9, still did not come down enough. Called the answering service and a Dr called me back. It said it would be OK to take 2 more Tylenol as long as I was able to walk around and eat and was not dizzy. I took 1 and my temp came down to 98.8 when I went to bed. Again this morning it was 101.1 so I took 1 Tylenlol and it is now 98.7. No other pains, no fatigue! As soon as I can get the fever to stop, I will feel normal. Office is closed Monday for holiday so I will see the Dr on Wed and probably get a shot Wed and Friday. I get a CBC on Wed so I am anxious to see if my WBC dropped. I was diagnosed at age 50, I am 56 now. The Dr has "no idea" why this flared up all of the sudden. They have a lot of unanswered questions about CLL. The injections are supposed to work faster than infusion. I much prefer the injection over sitting there all day with an infusion. Seems I went from stage 0/1 to about 3 in a matter of a couple months. At this point, I just want to get normal again and hopefully stay in a remission for a long, long time. Karen
As of today (5 treatments), WCC is 14.4. Platelets went up to 89. Yeah! Will still have to take the shots even when WCC is in normal range to make sure it is all out of the lymph nodes, spleen, and marrow. I was diagnosed in 2006 with WCC of 16 so 7 years later it is coming back into range. Fevers are still coming......
Good for you! Aside from the fevers, how are you feeling? Actually, I had not read your May 26 post and just did. Very interesting. I am 56, just diagnosed Stage 0. And they don't know why you suddenly went from 0 to 3 in such a short period of time? I suppose not. A lot of CLL is a big mystery, as you say. So you mentioned taking Tylenol. Do they not let you take ibuprofen then? Are you on steroids at all? Sorry for all of the questions. Just really curious. I agree that I would prob want injections over infusions. I wonder how long you will need them. Aside from fevers, do you have a lot of fatigue? I note that now, and I am Stage 0.
I've gotten a couple of private responses here, and I'm not sure how you post privately versus on the forum here. That's why I missed your May 26, very informative post. Sorry about that. But thanks for keeping us all informed of what's up with your treatment. Wishing you the best.
Thanks. My side affects - chills, fever, nausea. I have a nausea pill to take. Not really fatigued for some reason and my RBC dropped below range now too so I am anemic. No steroids. However, I do take 5 different pills for antibiotics for bacteria, anti-fungal, anti-viral, one for keeping crystals from forming in the blood when the cells die and 1 that suppresses the bone marrow production. I get another shot tomorrow and on Friday get blood work and see the Dr. If the fevers do not slow down, he is suggesting a hospital stay to get IV fluids. He also wants me to see a leukemia specialist at the Hillman Cancer Center in Pittsburgh to see what he thinks when I get into remission. My Dr already talked to him and they agreed on the treatment I am getting. I wish they knew more when this disease will start to progress so you can be ready. They watched my blood work for doubling time of the WCC and did a CT to verify swollen lymph nodes and spleen. Then the dreadful Bone Marrow Biopsy - it really did not hurt but the report hurt! It had "poor" prognosis all over it. Well, I can be thankful I am getting good results right now and hope to be in remission soon! The problem is this disease probably will come back but you never know when. I guess this will be an on-going saga for the rest of my lifetime. Thanks, Karen
Update - my WCC went to 1.1 so it was too low to get any treatment. 2 days later it is about 0.8. way too low. Now I am waiting for it to level off and come back up. It is nice not having to get the shots but I will still need to continue the Campath to make sure the bad cells are out of the bone marrow. Only side effect I have now is some itchy legs. Dr taking me off of one of my pills as it may be from that.
Hi and sorry I haven't gotten back to you recently, but I certainly am glad you are keeping us all posted of how its going. So I take it WCC is your white count or WBC? How are you feeling aside from the itching? I will be seeing my doctor for three-month blood tests July 9 and plan on coming in loaded with questions. Did anyone ever tell you what kind of a diet MIGHT help? Prob not, I imagine. I talked with a gentleman this past Saturday who got diagnosed 2-1/2 years ago. He seemingly wasn't interested in knowing the nitty gritty of his CLL, did not know if he had 17p, etc. He had incredibly hard, enlarged lymph nodes on the outside of the neck. Never felt anything like that. He talked about major fatigue and sweats, but no other real problems. Oh yes, he mentioned frequently waking up with hoarseness, which I actually have also, though I attributed it to my asthma inhalers. Now I wonder. I seem to catch every little virus and frequently have throat irritation. Just waiting and watching. . .
Thanks so much for keeping me/us in the loop. Please stay in touch and best of luck to you, as always, and prayers!
Hi - yes, WCC is white cell count. I guess it should be WBC. Itching has slowed down. No one ever talked about diet. I read on-line about diet. For years I ignored meat and exercised more but nothing made this ugly disease go away. I drowned in green tea and took a lot of turmeric. I never had hoarseness. I can't believe people are so uneducated about the illness they have. I always want to learn as much as possible and I probably drive the Dr crazy with questions. But I think he prefers patients who want to understand. My WBC was 1.6 yesterday. We will check it again tomorrow and resume the shots if it has gone up. Thanks for your e-mail. I will update again when I have more news.
Sorry it's taken me so long to get back with you. How are you doing? I agree it is surprising how many wish to keep their heads buried in the sand about this disease. Have you been experiencing hair loss? Has your treatment been continued or is your white count still too low?
Meanwhile, I found this the other day, a potential new treatment for CLL, in particular for those with the 17p deletion. I will be seeing my hematologist July 9 and find out how or if I am progressing. Read on and best to you these days. Let me know how things are going. God speed to you.
"The last area of research is the B-cell receptor kinase inhibitors in CLL. There are two kinds of these B-cell receptor inhibitors, ones that are active against Bruton tyrosine kinase, which we call BTK inhibitors, and the other kind are the PI3 kinase inhibitors. The excitement is because these drugs are given orally on a daily basis, they have minimal side effects, and they are producing very high response rates which are durable. So people are starting to make analogies of these B-cell receptor inhibitors to the early trials with the TKIs, namely imatinib in chronic CML. We think that this is a new era in CLL, which is going to be very exciting.
At this ASCO meeting there was an update of one of the BTK inhibitors, ibrutinib (formerly PCI-32765). The update was for both newly diagnosed older patients with CLL and for patients with relapsed or refractory disease. In the front-line study in older patients, Dr. Byrd updated results in 31 patients and what he shows in these patients is minimal side effects, essentially no severe side effect. He showed also that as was seen in the salvage setting, there was initially a transient increase in the lymphocyte count while there is a general decrease in the disease overall in the lymph nodes and the bone marrow. Among those 31 patients he has shown that overall the response rate is 74%. The complete response rate is low, only 10% but as the patients continue to be treated, many of the patients convert from a partial response to a complete response.
Interestingly, they saw responses in the worst categories, such as patients with deletion in chromosome 17, and they also updated the results among patients who received the BTK inhibitor in the salvage setting, showing again that those responses are occurring at a high rate and they are durable. So for example, in the 31 newly diagnosed older patients treated with ibrutinib, after a median follow-up of about 15 months, 90% of the patients continued to respond. In summary, they report that in the newly diagnosed older patients with CLL the overall cumulative response rate is about 80%, the estimated 15-month progression-free survival is 96%, and the drug is very well tolerated on an oral daily basis.
So that forms the basis of the excitement and the belief that these B-cell receptor inhibitors, including BTK inhibitors and PI3 kinase inhibitors may open a new era of research and treatment and establish new standards of care in patients with chronic lymphocytic leukemia."
Hi - am doing fine. White cells at 2300 so I am getting the shots at a lower dose. The lower dose does not cause a skin reaction or fever and won't bring my white cells down too low. Dr is very pleased with my counts so far. Platelets went up so this is another indication this is working. No, I had no hair loss with Campath. Dr thinks I will get into remission but not there yet. All I can hope for is the remission lasting a long, long time. Maybe there will be a cure or something better coming out in the next few years. Thanks for the article. Looks promising! Let me know your update after your appointment. By the way, I saw that someone posted that the 17p deletion can go away in rare cases when in remission. I asked my Dr and he said that is true so I am hoping this is the case for me!
Hi Juliac - my white cells were 4.9 yesterday! In RANGE! I was back on full doses of Campath for the last 3-4 weeks and my white cells stayed in the 3.1-3.9 range for a few weeks. Platelets at 126 yesterday which I consider good. And there was no reaction to the full dose anymore. I have about 2 more weeks of Campath injections and then I will have the bone marrow biopsy to see how the marrow looks. Then I have an appointment mid-Sept to see a specialist on my options. I am sure he will talk about bone marrow transplant. I really do not want this but I am willing to go see what my options are. How did your appointment go in July? Sorry I have not been on this site for awhile. Let me know how you are doing.
It's been a long time. How are you doing and feeling? Just wondering how things are going? My counts are holding, but my clinical state vis-a-vis fatigue and low grade viruses and temperatures are not, to say nothing of my endurance level and stamina these days. Just wondered how you are. . .
WBC was 4.9 and but last 2 times were back to 2.9. Funny how it could be 4.9 and 2 days later it is 2.9. I see the Dr on Mon so I will be sure to ask. Still getting Campath injections, probably done by next week. Appointment on 9/13 with specialist. I found that there is a new clinical trial for a drug that looks promising to relapse patients and 17p deleted patients and it is ibrutinib, just like you stated earlier. I hope I can hold out for that instead of a bone marrow transplant. I have been writing my questions on a notebook to take with me to the specialist. I still feel like nothing is wrong at all, no fatigue, fevers, viruses, etc. I feel lucky for that, but....you never know what is coming. How has your blood work been? I found another site with a lot of info - The CLL Forum. You can access it at http://www.cllforum.com/login.php Not sure if you have seen this site but there is a lot of info there. I will let you know how the appointment with the Specialist goes. They have a transplant unit there so I am sure they will be pushing this. I can't even stand the thought of it.
Well, good luck today! I don't blame you not wanting to take the transplant route. Ask your doc about allogenic hematopoietic stem cell transplant from your own peripheral blood. It may not be tried and true yet, but I should think safer than bone marrow for sure! I wonder when the ibrutinib is coming out. From what I read, 17p symptoms begin to manifest about 9 mos after original diagnosis. Well, technically, I had an abnormal white count last October. You are fortunate not to have overt symptoms as yet. I do have fatigue a lot and mild upper respiratory symptoms that come and go. My doctor warned me about immune dysregulation, and I take it these are occurring now. Thanks for the website. I will definitely check that out. Good luck today and keep me posted. My white count is holding, forgot to mention, and I should be checked again in October. He might move me out to every six month checks after that.
Hi Julia - well, I was not very happy seeing the specialist today. He said for CLL they do not use your own peripheral blood. It has to be donor marrow. And he gave me the odds of surviving the transplant and the odds of possible relapse which did not sound good to me. I am going to call Ohio State University tomorrow to see if I can get into the Ibrutinib trial. Specialist said this is my best bet. I guess the trial would be a better option than a transplant. Karen
Well, that is not good news. I hope and pray you can get into that study in Ohio.
Perhaps my doctor told me this (about hematopoietic allogenic cell transplant) to soften the blow of the diagnosis. Then, too, we may not have yet known about the 17p, unmutated IgVH. It seems you and I are the only ones here. Rick never clarified if he had 17p or not. Yes, it was me who posted that my doc said he'd seen one patient lose the 17p. Why and how is the question? And why did you jump from stage 0/1 to 3 in a couple of mos? Too many unknowns, so we are feeling like sitting ducks (I know I certainly am).
It sounds like Campath wasn't too hard on you, and that's good. For whatever reason, I believe my doctor talked about starting (if and when it comes to that) fludarabine. One of the other things 17p imparts, and I think I also have (in addition to everything else bad) the p53 mutant, and I will quote here, "a minority of patients demonstate deletions of the p53 tumor suppressor gene located on the short arm of chromosome 17."
I too had "poor prognosis" on the notation of this on my lab work. The quote, by the way, comes from a publication called UpToDate, a journal or compliation of all up to date research out there on a given disease entity. I know someone who works at the University of Colorado School of Medicine as a librarian, and he sent me all he had on CLL. If you are interested, I will see if I can get these articles to you. You can e-mail me at email@example.com if you would like.
Meanwhile, I wonder why your doc didn't try fludarabine first and went straight to Campath. I will be seeing my oncologist again the first week of October and will ask him about this.
Stay in touch and let me know about getting into the study.
I'll be back though I'm sure with more comments and questions.
Julie and Karen,
I just registered on LLS site and was interested to find you two with a diagnosis similar to mine. I am a 58 year old female, diagnosed in Nov 2011 after what my primary care doctor thought was mono. I, too, have CLL, with del 17p and unmutated IgVH. My hemotologist/oncologist's plan for me was 6 rounds of FCR. After each round I had 7 days of neupogen shots. I completed my chemo in May and am in at least partial remission now. I was referred to the Transplant Center at LDS Hosp in Salt Lake City, UT (we live 30 miles north of SLC) and the recommendation is for me to have an allogeniec stem cell transplant when the cancer shows sign of returning. My three brothers, all out-of-state are all potential donors so I am thankful for that. I find it very confusing, tho, that doctors have given such different treatment plans and am interested in comparing information and hopefully starting a dialog. My bone marrow biopsy in Sep showed no evidence of the del 17p chromosome, however, my doctor is still assuming that it exists but not in the sample that was taken. Six months after treatment I am still having some issues with low blood counts; however, all seem to be rising except my platelets, which are at 50. Doctor is carefully monitoring me--I get CBC every three weeks.
Valerie (registered as vadavid)
The CLL forum group is a blessing. Just reading many of the posting and comparing
notes was and still is a big help to me when trying to understand the winding road CLL
lays out for us.
It seems to me you have a great group of Healthcare doctors and staff on you team.
You already have a huge amount of experience with CLL you can share with the group.
Good luck and be well... Keep posting updates .. and sharing your experience I know I will be
comparing notes just like so many others in the CLL group will be doing.
Hi Valerie - Julie and I have been corresponding for a while now. 17p deletion is bad but it does not react the same for everyone. There are a lot of articles out there about 17p deletion and most Specialists are saying it can go away after treatment or can be diminished greatly but it varies by person. My Dr did not want me on FCR as he said it would not work as well as the Campath. But I do know people who had FCR with 17p deletion so every Dr has different opinions on the treatment. After my treatment, my BMB showed 5% residual disease and about 3% of the cells tested had 17p deletion. So they are calling this a partial remission. All of my blood counts were normal except platelets which were real close to normal. My opinion only is that I would not rush to get a transplant. I did see a CLL specialist at Ohio State University where they do clinical trials. There are several new drugs that are showing real promise and should be available within a year to 18 months. One Dr told me that a transplant does not always work well for CLL as there is a 40-50% chance of relapse to CLL if they do not kill off every bad cell. I am hoping my remission can last 2-3 years (or more!) and then I can try the new drugs that will be approved. After my last treatment in early Sept, I had a PET scan which showed some mild swelling in the neck lymph nodes but my spleen and abdomen were normal. And the BMB showed no abnormal chromosomes and no evidence of any transformation in the blood. FISH test for marrow showed the 3% of the 17p deleted cells but no other abnormalities. So now I am getting some maintenance treatment. I am getting Rituxan once a week for 4 weeks. Then back on watch and wait with monthly blood work and maybe more maintenance in 4-6 months. Let the Dr keep a good watch on the blood work to see if anything starts to change. How high was your white count when they started treatment? Did you have swollen nodes? Any other symptoms? Seems like you started treatment quickly after diagnosed. Good luck to you and keep us posted!