I ran across this on the internet last week and thought I would share it with everyone. I was just wondering if anyone had any thoughts about this. It sounds really spectacular, especially for those of us with node issues. It looks like it has been around a couple of years, but still in the study phase. According to studies, its cytotoxicity is 5- to 100 fold greater than rituximab and is more potent and effective in depleting b-cells than rituximab. It sounds very encouraging!
The results in this particular case were spectacular - and the way this particular antibody works is different from others. But we have to be really careful about this stuff. Without the experience of clinical trials it's so hard to say whether this will be normal or an aberration. Rituxan looked like a home run as a single agent - but turns out in clinical trials it worked better in combination with traditional therapy. Even the new Cal 101 looked extremely promising as a single agent until recently - now there are more clinical trials in the works.
Anyway here's more info if you want to read about it.
For me the most exciting part is that there are many new therapies on the horizon... if you go to the front page of CLL Canada it has a list of them with a link to an interesting document about these new drugs/treatments
I read some informaiton about this treatment on a few weblinks
It seems to be a spin off treatment like Rituxan and other CD-20 treatments.
Each targets different area of the cancer cells so our own immune system can
find it better and kill it.
I hope this does work great. There have not been many new good treatments
on the market since Rituxan.. and that was back in 1999-2000
The old golden standard are till being used.. FCR ,FR, RCHOPs, RCVP, and then there are some treatments that have
been use for years now coming from eastern Europe and other Inter National countries. this is a good thing.
Yes.. it is great news.. I hope we have more great news about this and many more treatment soon.
Thank you for posting this information.. it always lights up the Hope sign once again.
good luck to all..
Don't believe everything 'medical' in the mainstream press...
This report even failed to mention what the actual drug was. It was Obinutuzumab aka GA101 (RO5072759).
They also failed to mention the fact that Bendamustine or FC was also used in this clinical trial, as
partially outlined on the Clearview webpage.
While the results appear to be very impressive this is one patient and very early
in the treatment cycle.
Certainly reports from Europe indicate that Obinutuzumab may be superior to Rituxan
but this will not be determined scientifically until there are major Phase III clinical trials.
The first of these trials is currently underway worldwide comparing Obinutuzumab with
Rituxan and chlorambucil.
Results are likely 2-3 years away...
Great to hear your results...I was only sceptical because the news article didn't
mention the treatment or the clinical trial protocol. The website listed a GA101
and Bendamustine /FCR trial so who was to know it was GA101 mono therapy.
Can you give me more information about the clinical trial you were in so
that others may benefit from it as well?
My Dr. saw the GA-101 article amongst the other CLL related articles in my notebook and said it was a very promising development in the treatment of CLL. He felt sure that a breakthrough was very close, perhaps within the next couple of years. I for one am very hopeful and pray I can stay healthy long enough to take advantage of the new treatments. Thank you drtlamb for taking the time to inform us of your wonderful news! - Wendygirl
My biggest problem caused by the cll is a low platelet count. It is currently at 80 & any more decline & I will have to start chemo. Did the GA101 help your platelet count? My current WBC is 14.4.
GA-101 is only available in clinical trials currently in combination with other drugs
It also goes by the name : RO5072759
The CLL11 trial is for untreated patients (Phase III) - http://clinicaltrials.gov/ct2/show/NCT01010061?term=RO5072759&rank=2
and the Galton Trial (Phase I): This is in combination with Bendamustine or FC
How this patient received this as a monotherapy as he claims, I'm uncertain...
Well it seems cllcanada knows more about what my treatment was than I do since he said " that I claim I had monotherapy." For his information I had ONLY had the GA 101 when I achieved the results I obtained. Yes I did have the bendamustine treatment the next day but the results were solely the result of the GA 101. I never "claimed" I was only having GA 101 or monotherapy. The results were the results of the GA 101 prior to the bendamustine. When he has more information regarding my treatment I will be glad to correct it. Dr. Lamb
Hi - I recommend that all us CLLers remember to be civil in our postings.
For those new to these CLL forums - CLL Canada is one of the best sites for obtaining current information about all things relating to CLL (new findings & clinical trials). For the many CLLers who use the CLL Canada site - we are very grateful that CLL Canada expends the time and effort to update and maintain this valuable resource for the CLL community.
Newcomers - visit this excellent site and check it out.
Good luck - Patti
Thanks Patti, It was never my intention to question the results of Dr. Lamb's treatment, I was simply trying to establish what the clinical trial was, so other CLL patients might wish to consider it. I did ask Dr. Lamb for some clarification in a previous posting, but it was never forth coming and the original news story was high in superlatives but devoid of facts... ~chris
Greetings to Everyone...
Thank you ..cllcanada... for sharing your information.. these type of websites and links
are so important to put light on the unknown...clear the smoke and mirrors of the medical system
on how they are sharing information to the patient.
Thank goodness for open discussion... and sharing.. I know first hand the roller coaster of
emotions of wondering what was coming next for me when I first was DX with this CLL
Thanks to everyone that sharing information and experiences with the CLL forum. it helps so many.
good luck to all..
Totally agree. These results sound great - but as a guy with CLL I really need context for them. I read the article too -- it looked too good to be true and because it had no info regarding the trial, the doctors etc I thought it was one of those disguised press releases that sometimes make their way into newspapers. This treatment looks very encouraging and I'm hoping it will eventually end up in broader trials where we can get a real sense of how effective it is for a larger range of CLL patients.
Dr Lamb should keep us updated on it if he can. But please also understand that part of our "skepticism" comes from hope and fear - hope that this is indeed a breakthrough, and fear that it will turn out like many other treatments in the past - important - but incremental with no ultimate impact on our lives.
Thanks and stay well everyone.
Very well put NorthStar... I was fortunate to have been around in the days when rituximab(1996) was going to be the 'silver bullet' that would dispatch NHL and perhaps CLL. Well it works OK as a mono therapy for NHL but rather poorly in CLL as the major clinical trials proved.
Certainly the early clinical trials of GA101 (RO5072759) have shown that it is superior to Rituxan and it uses a different killing approach. The CLL11 - 3 arm- Phase III comparator clinical trial currently underway worldwide in 260 locations will confirm this when compared with Rituxan and Chlorambucil. But the results are at least 3-4 years out... The problem is that nobody knows about this major comparative clinical trial because it is listed under RO5072759 the previous name of GA101. This should be corrected.
Here is the trial... there is probably a location near most patients, should anyone wish to consider it: http://clinicaltrials.gov/ct2/show/NCT01010061?term=RO5072759&rank=2 Hope ~chris http://cllcanada.ca
I am not Dr Lamb..but I am taking part in a Phase II clinical trial involving CLL that uses only GA101. So far, everything looks pretty good for me and I feel better than I have in a long time. I have had a few unpleasant reactions to the infusions, So far, the results look pretty good for me. The trial is on-going with no published results and I can speak only for myself.
So far, so good. As with Dr. Lamb's experience, the first infusion had dramatic results. My white cell count dropped from from over 200,000 to within normal range. I was pretreated to prevent tumor lysis syndrome and had minimal discomfort. I completed the fourth infusion a week ago and I am now much slower getting back to whatever is "normal" for me; the swollen lymph nodes appear to be about half of what they were before we started the infusions.
The first four infusions have been done on a weekly basis; the next one will be three weeks from the previous one. I can certainly understand that I need additional recovery time at this point; my energy levels are not rebounding quickly as they did at first.
This is a follow-up to my remarks of Sept. 5. I have completed the course of rx with GA101, obinutuzumab, as of Oct. 16. I am told that there is a 'complete response', a hematological remission. Final results of flow cytometry are not yet back, but I have been scheduled for repeat bone marrow examination and CT's in view of the "CR". The bone marrow repeat would not be done if I had only a partial response. The marrow exam is to see if there is actual molecular remission - total cure seems improbable to me, but fantastic if that should be the case. To repeat, the sole treatment agent was 1000 mg GA101 plus a 20 mg dexamethasone infusion. I am sure that not everyone will have the same response to this single agent treatment, and why some respond more than others, or less, must be due to genetic differences and variability in the disease which will have to be worked out. So, very lucky so far.
Had CT exam of abdomen and chest this week which showed spleen has returned to normal size. Prior to treatment which was begun in end of May it was much enlarged. Abdominal nodes visible on first CT have reverted to normal or disappeared. All blood parameters are normal, except total protein and gamma fraction but they are higher than when treatment begun. Last GA101 infusion was Oct. 16. Bone marrow biopsy/aspiration was done this week - results from exam and flow cytometry will come in next week. As far as the blood is concerned, have had a "CR" thus far.
I am so glad to see your information appear on this list.... and the fact that you have a complete remission showing with the blood work. I have just finished my last infusion (December 11) and do not have as much information concerning results at the present time.
Dr. Lamb appears to be doing well; he is being treated at a clinic in Huntsville, AL and the local TV station there has done several interviews on the progress of his treatment.
I'm new to this list, so hope am getting in at the right place. I am in the CLL previously untreated Genentech/Roche GA-101 trial. I'l be 74 in one month, good shape, very active, no other medical problems of note. I have 2 more treatments to go, ending October 16, then months and years of follow-up. The 3-weekly treatments are 1000mg GA-101 plus 20 mg dexamethasone. The only symptoms I have from the treatment are from the dex: a sleepless night of treatment, occasional hiccups, some fluid retention. My diagnosis of CLL was made 12 years ago, with bad markers - high CD-38 and ZAP-70, but followed slow course until a year or two ago, then wbc tripled in less than a year, lowered platelets, hemoglobin. starting wbc was 82,000, 90% lymphs, 97% of them the bad clone. As previously mentioned the first dose is 100mg day one, day 2 is 900 mg. I was put in the 1000 mgm arm rather than 2000. Had brief tumor lysis symptoms after the first hour of 100 mgm. Blood count before the 900 mg dose went down to 14,000, 29% lyphocytes, 55% of them the bad clone. The week after, 1000 mg - no symptoms. The wbc were by then normal, 5,000, platelets up, hemoglobin up, 28% lymphocytes, 40% malignant. I am now at the stage of minimal residual disease - the CD19 cells were originally 64,000 (absolute number, now they are 11! I did a rough calculation of the number of malignant lymphocytes killed after the first 100mg of GA-101, and it came to about 165 trillion cells, about a cup full.) All my blood parameters are now normal. I really didn't feel sick before treatment, but I noted some lymph nodes in my neck for 12 years, now they are gone or tiny. I imagine there will be a followup abdomen CT or MRI for nodes, spleen - probably also shrunk. I do feel perhaps slightly more endurance, possibly due to a 30+% increase in Hemoglobin and hematocrit.
2 more treatments. If there are even fewer of the malignant clone, maybe a a bone marrow repeat to see if complete (unlikely) remission - but I feel this is a spectacular result. One agent, sparing the bone marrow - fabulous. No rick of myelofibrosis (killing the bone marrow), anemia, platelet producing cells.
How long, durable, who knows. But if it buys me 3 years, 5 years, 7 years, by then maybe something even more targeted to the malignant cells will have been developed, or just get a repeat course of GA-101. They are talking about a surface protein ROR-1 specific for malignant B cells, but it's also on some developing marrow cells, pancreas and fat cells, tho at much lower density (I think 1% and 10% are the number).
My understanding is that the trial has been filled - 80 patients around the country. I wonder if some preliminary results will leak into the literature or the news. I would not call this a miracle - I would call this a scientific and research triumph, for sure. 5 short years ago this drug did not exist, and all CLL rx's were toxic to bone marrow, since they were, and mainly still are, combinatioin therapies.
I hope all results are as good as this, and this sheds some light.
Thank you for the information. I also understand that there are no places left for test subjects in this trial. I have three more infusions to go. I am so grateful to have been accepted for this trial; I was one of the last people accepted and the only person in my state. I am also on the one gram arm of the trial; and a bit older than you....76. The most amazing to me result was the change in WBC... from over 200 K to 5 K after the first infusion (broken into two infusion days... 1 tenth gram day one, and the 9 tenth gram the next day, just as yours was done). I was pre-treated for tumor lysis syndrome, thank goodness and had no problems from that. So far, side effects seem to be minimal but do fluctuate a bit. I feel well the day of the infusion and the following day....then things can get a little rocky and vary a little. Low grade fever, some head ache, sleeplessness..the only scary thing was "flickering" of vision in my right eye after infusion 4; no problem like that in any of the other infusions and no explanation of why. Things looked exactly like watching an old movie reel when speeds were variable and the picture would "hang", move on a bit, and 'hang' again in a jerky way...easier to see than describe .
I am one of those people who suffer from extreme fatigue from CLL; a recognized problem but nobody seems to know why some people do and others do not. Despite the minor side effects I have had from the GA101 I feel better now than I have for years. I hope things continue to go as well as they have for both of us.
I recently posted here that I had a partial remission of CLL from the GA101 trial (mono-therapy), but found out today that my statement was incorrect. I received a call today from the testing facility telling me I had a complete remission and that another set of tests would be run next month which would include bone marrow biopsy as well as CT scan and more blood samples to confirm the results. These same tests except for the BMB were done earlier this month. I was so excited about how much better I felt that I accepted the "guessing" statement as fact before all the test results were in.
Well, once again I am home from more tests to "confirm" my complete remission of CLL using GA101 mono therapy. Turns out it is not "complete remission", but it is a "very good" partial remission. Meanwhile, I feel well and the blood work looks great but very small lymph nodes are visible on the CT scan. They are, in fact, smaller than the ones that appeared on the previous CT scan when I was told I had "comeplete remission". Odd, isn't it?
You've not posted since June. I for one am interested in how the clinical trial is going for you and more importantly how well you are doing personally.
CLL Canada does post much information for us, I truly do not believe he was attempting to tell your story for you as he couldn't, he was just pointing out that we all need to be more informed about many of the trials ongoing. I have a friend who participated in the CAL-101 trial which was touted to be the next great thing, and I do believe they are having some good results with this for some people, but for my friend it wasn't the answer.
It's always good to hear from someone actually participating in a trial to get the real down and dirty of some of the real side affects being experienced by real people, not just the facts and figures released during the early phases.
I'm currently doing Bendamustine & Rituxan for my issues. My friend who did the CAL 101 trial ended up using this and did very well but warned me of certain side affects to be aware of. I did my first round this week, and sure enough one of the symptoms he warned me about has been a issue (intestial issues TMI I know but something we should be prepared for). Since I'm still working it was good to be aware and able to make alternative arrangements (I am part owner of my own business so much easier for me to do) to be able to work around my symptoms.
My point is that we need to try to share our information when possible and be respectful of the questions & sometimes doubts from others expressed. We all have contact with others with cll both on these boards and in the real world. I take into account everything I read and want to hear both sides so I can make better informed decisions. Of course, in the end, I trust my hemo/oncologist after 10 years of dealing with cll, so his opinion is one that matters the most to me. He has been conservative in his approach to my treatment as my cll progression has varied over the years. I feel his concern is for my overall well being and ability to live as normal a life as possible as that is my concern as well. I was 54 at dx, am now 64, have been very blessed thus far to continue working and to continue with much of my volunteer work as well as spend quality time with my family. Had we gone very agressive with treatment early on I don't feel I would have had this time and ability to do so much.
So please come back and make us aware of how you are doing and your suggestions to others as to whether this trial worked for you. You are very correct in your comment that it is the patient in the trial who is best prepared to discuss the details. But at the same time, we do need to be very careful of all we read. We all know that with a little tweeking the %'s can look very good on paper, but we are not aware of how many patients who were removed from those trials early have no bearing on the outcome %'s. If you remove patients who stop the trial early (like my friend in the CAL 101 trial) his side affects may not have been included in the #'s,not even sure he was included as a 'failure'. That can make the 'sucess' numbers look much better. Each trial has rules to follow, but we as the general public are not aware of just what those 'rules' are.
Hope you take this post in the manner it was meant--to encourage you to share your experiences and understand at the same time that we have a 'need to know the facts' and sometimes that need makes us sound a bit pushy.
Glad to hear you had excellent results with GA101. Hoping you are still experiencing good results. My husband started his first cycle of GA101 on 3-12. 10% infused Monday 3-12, remaining 90% on Tues with FC. Weds & Thurs FC. Full does of GA101 repeated Mondays 3-19 & 3-26. One week off, then again 3 Mondays in a row, the GA101, and the two chemos Tues-Thurs. in the first week only. He has not had previous therapy except IVIG. Diagnosed with CLL early 2011, after a bad bout with shingles of the mouth, nose, face (right side) that started Oct. 25, 2010 - a symptom of CLL. Still has severe PHN. Gland/node swelling came quickly in 2011, needed transfusions pretty much weekly by Nov. 2011. So now we will see how clinical trial of GA101 with standard protocol of FC helps. There was an immediate quick reaction just once to the first infusion of GA101. Flushed warm & pink, then blood pressure dropped and he turned GRAY. Stopped infusion but had him up and going again in an hour with no further reactions. My husband is clinical patient #2. Patient #1's immediate reaction was to throw up. Then he was also ok and proceeded with no problem. (notes: positive for ZAP70, CD38 & CD20, unmutated, hemolytic anemia treated with 2 pints transfused most weeks, WBC @ 40,000). Diagnosed age 54, just turned 55.
Well, I see I've been using the wrong name here... it is Drtlamb. I really, really would like to know how you are. I am so pleased to have had such good results with the GA101 used all by itself; I hope your news is good also. I have a partial remission and hope that it will last until something else comes down the pipeline. We need all the encouragement we can get.
Hello! I am new to this. My husband who is 42 was recently diagnosed with stage 1 CLL. We were completely shocked and I am completely panicked as this is very fresh for us. We have three small girls. Recently a cold has entered our home and Todd has fought is off pretty well except for a slight sore throat but the lymph nodes in his neck are very swollen. His oncologist says it is completely normal and not to worry. I am WORRIED. Has anyone had this side affect but never had the disease progress? Does anyone know of a support group for spouses? Thank you for any help!
Swollen nodes with a sore throat sometimes happens. I have issues with my nodes so they have been enlarged since my dx back in 2001. Sometimes that just comes with the CLL. But if he has a cold it is very likely that the infection has settled in the nodes closest to the site.
Worry, that is something that does come with the territory. But we patients know how we feel and sometimes when we try to tell our spouses and loved ones that this is 'just a cold' it really is 'just a cold'. But having been a caregiver in the past I also understand the worry that you feel that the patient is 'sugar coating' how they feel to protect us.
It's new to you, you'll go through many emotions from the shock, panic, anger, sadness, sense of loss, and many other emotions. Sort of a roller coaster ride. It'll take a little while to actually see how his particular brand of cll progresses. I was blessed to go 6.5 years without the need for treatment. I had treatment in 2008 and again starting this week. But it has been tolerable and I've been very fortunate not to be ill too often.
You'll learn hand washing is very important for the entire family. One strange suggestion to is make sure your toothbrushes are not in the same container or drawer. Keep his separate for sure. And after the girls are over the colds get them new toothbrushes. And for him as well. They are cheap to replace but they hold germs for a while. So that has been my one big thing I do, I change brushes at least every 2 months, rarely had a cold even when family has.
Another thing is to keep the hand sanitizer in the car. Have your hubby wipe down the steering wheel when you've been shopping and he has handled the bags. (Wiping down the grocery carts is second nature to me). I'm not phobic about it just careful.
Hope this little tidbit helps. I would tell you to calm down and take it slow but words are easy to say, Doing it is another thing. I've had my calm/panic/calm over the years. But after a while you learn that you cannot panic everytime there is a sneeze or a cough, or it'll drive you both crazy. Of course I was 54 at dx, no small children at home, and work mostly with adults. But adults who were sick a lot.
My primary doctor often jokes that I'm her healthiest 'sick' patient she has. Mainly check ups for cholesterol, weight, blood pressure, etc., just one major cold this past year which I contracted in a very crowded ICU at a hospital in Texas when my brother had heart surgery. Room full of sick kids, never been in an ICU where they allowed kids like that before so was very unprepared on day 1 with my clorex wipes or masks or anything to protect myself. It was so bad my husband who NEVER gets a cold got sick as well. And my niece and my sister in law as well, so this wasn't just my cll putting me at risk because they all got sick as well. It was just a nasty viris going around.
Just mentioned that so you can consider being somewhat prepared for things like this in doctor's office waiting rooms. If I do go to my primary care doctor I check in then wait in the hallway if the wait is to be very long and they call me when ready. When possible they go ahead and put me in a room to wait my turn rather than leaving me out front. I don't see the doctor any sooner in those cases, but at least I'm away from all the sick folks.
You'll find your own way through this, and find in so many ways it makes you remember how lucky you are to have each other and bring you closer. My hubby and I have 42 years together and we've always been close, and he's a sort of half glass empty type while I'm the glass half full type. Somehow we balance each other out. He gets all worried and I get tough about it. But when I get down and out he becomes my rock when I need a strong shoulder. None of the worry he has gets mentioned, I only hear positive from him. He learned that along the way, believe me, it didn't come easy to him. But I'm so glad he learned it.
That's the one point to you as a caregiver, you will need to be the strong one so much of the time. There used to be a page on here for caregivers, not just for cll for for caregivers in general. You might want to find it. That way you'd feel free to 'rant' at times. Yes, caregivers need to 'rant'. I was there, you feel so unappreciated sometimes. You don't think people understand how hard it is for you to be the one to be up at night taking care of the sick person and then going to work during the day and having to listen to all the complaiants, and be the one to be sometimes yelled at when the patient is feeling pain and anger. Yet that patient sometimes needs to release the anger so you have to bit your tongue and smile.
Yep you need to talk to others to learn how to cope, and only another caregiver can truly understand. I've been the patient for a while, I've probably forgetten a lot but check out the sites here, I'm sure there is a place you can post.
And we'll listen too, we are still somewhat human and won't bite your head off , at least I'll try
Unfortunately, CLLtopics.org is no longer adding information to its website. The wonderful lady who worked so hard maintaining this site has suffered "burn out" and is taking a much needed break. There is, however, a lot of information still posted there, but is not being updated at this time.
Results are back for me for the GA101 trial phase II using only GA101. I have a rather good partial remission. My spleen is now normal (unlike in the beginning when a large tumor was visible) insofar as can be seen on the CT scan. Other infected lymphnodes are greatly reduced in size, but are unfortunately, still apparent. Blood work at this time looks almost normal, but I am back to borderline anemia. Also, sorry to say, I have had a few skin biopsies whose results are not yet in. (still looking for a good dermatologist) I was on the one gram GA101 arm of the study.
Fatigue symptoms are much improved as I have posted on other threads on this website; I am planning a new exercise routine since I really think this is probably as good as it will get when one has blood based cancer; I just did not have the get up and go to whip myself up
into an exercise frenzy of any kind. (for me, exercise frenzy would be walking a block or more. )
BJT -- Just finished reading your posts regarding single 1000mg GA101 therapy. Thanks for your information. Please keep us updated on your progress. My Dr wanted to start me on B&R IV chemo in June 2012, but i said no ... I have to many issues with pain unrelated to the CLL thus it is hard to know how the CLL is effecting me except to see my CBC's get worse each year since 2006. So I am waiting/watching with 130k WBC & 123k ALC, but other CBC numbers are fine. Not sure if i am even going to do chemo due to spinal issues, but learning all i can regarding new treatment such as GA101. Regards, and luck to you. Thanks again. Daniel
I shall keep everyone posted. As far as therapies go, I did have bone pain afterward, but did not realize that was due to the shot of Neulastin they gave me the morning after the infusion the day before. Neulastin is meant to jube up the system to make more white cells as soon as possible to replace the ones killed by the GA101. Not until the trial infusions were completed did I think to look up the side effects of Neulastin. Moral of this: look up stuff first before you agree to take it. GA101 is not that unpleasant. My doc also wanted to put me on Retuximab/Bendamustine which I declined. I was very fortunate to be able to get into this trial.
Daniel, I also want to add I had that my WBC was around 210 K when they decided I really needed treatment of some sort. I believe that some docs pay more attention to the doubling time than to the actual number, although some others base their opinions on different factors.
BJT -- Thanks again for your response. I agree with the treatment being based on the doubling time ... that is SOP. Neulasta is usually given to increase your neutrophils .... if they get down to below 2, you are on your way to neutropenia -- neutrophils are the 1st line of defense when the body detects inflammation --- neutrophils attack whatever is at the inflamed site. I know you know all this, but it is what i read, and my RN wife tells me about neutropenia etc.
Very interesting that you refused B&R. I am not doing chemo due to some really nasty long term spinal issues i have dealt with for 3 decades .... i take injectable opiates IM, and I have a hard time knowing if i am tired from side effects of opiates, or CLL. I think I am kidding myself by not realizing that the CLL is probably kicking my behind. AS i mentioned, my only non CBC symptoms is a swollen spleen ..... 16cm per CT scan. Again, thank you for your response .. I hope you continue to do well. Regards, Dan
Bendamustine was developed in the 30's/40's/ as a possible chemical warfare agent.The nitrogen mustards are cytotoxic chemo agents similar to the mustard gas used in WWI. It has been around a long time without doing much previously and researchers are trying to revive its use; I think I'll wait for some of the targeted chimera's that are in the pipeline (assuming my "almost" complete remission holds long enough.) Meanwhile, I don't want to do anything I have not given much thought to.
At the teaching hospital I went to for the trial, they seem to give everybody who has infusions Neulasta....sorta' one-size-fits-all arrangement. .I had no problem with the neutrophils at any time during the infusion period of the trial (perhaps because of the neulasta?) All I know is that bone pain is one of the side effects and my white cells are now within the normal limits, so are neutrophils, but RBC is a little light. I am trying to build up my system since I have become borderline anemic at some point. Evidently, I have plenty of red cells but they are all small. .Looking carefully at a graph of red blood cells and the point in time where a huge drop in occurred, it occurs to me the "drop" occurred about the same time I stopped eating cream of wheat for breakfast. I think I have some iron deficiency I need to take care of before starting any new pills/treatments, I have been border-line anemic most of my life (I don't really care for red meat which is the best source of hemi-iron around probably accounts for much of the problem) So, back to eating some meat and cream of wheat for breakfast. I want the RBC to be as good as they can get before my trip to Mayo (Rochester) for a yearly consultation I have there. I need some good opinions from an expert.
You are so fortunate to have an RN wife. Believe me, CLL makes one weary enough all by itself. I am so sorry about your spinal problems. Any idea about the cause? You really don't want other problems in addition to CLL, but unfortunately, we all seem to have them.
BTW, GA101 is now called Obinutuzumab.
BJT -- Interesting information you have for the Treanda/Bendamustine. The B&R is the new gold standard for CLL treatment at the Onco/Hemo clinic I go to. They used to go with the FCR treatment, but have changed to B&R now. I saw some good info comparing trials of B&R vs FCR, and the FCR seemed to be the better way to go. But my issue is that I really do not think i will do chemo due to the decades long spinal issues ... had a nasty double level lumbar fusion in 1982 which snow-balled into another fusion in 1983, another in 1989, and than a Hail Mary pass attempt to fuse my left SI joint in 1991. This along with a congenital defective L6/S1 segment (LSTV) has resulted in a bone on bone issue at the SI, and top of ilium, as well as not solid fusion at L3-4. Probably way TMI, but it is what it is. Thus I take opiate injections which creates it own issues with the GI not working, etc. This just puts you in a constant do-loop of trying to isolate the spine, and try to keep distention down with GI tract, etc, thus cannot travel, and just have to deal with this spine 24/7.
In my mind, and i may be way off here, but the IV chemo is like throwing good money at a old broken down car. It is a constant battle, and i do not see how it would make sense to do chemo to get me at best back to where I am now?. Again, my thinking may be off, but it is based on 3 decades of dealing with constant spinal issues. The CLL showed up during a general physical in 2006 when i was having my GP look at a large 4 inch x 2 1/2 inch lipoma on my upper arm near the shoulder. That was removed, but it took over a year of PT to get my arm to work again, but it worked out great with time. I have a knee that needs surgery, but those knee surgeries go real well, but the CLL prevented clearance for the surgery, but my Onco did give me clearance anyway, but not sure if the simple knee surgery is worth having done now since my other knee is needing work on it. I have always walked 2-4 times a week even with the spine issues just to have some type of PT/exercise etc. Again, TMI, but i am going in to talk to a psychologist to help me make so sense of all of this. heck, I am only 62, and except for the spine/GI crazy ordeal I am fine. I never get sick, colds, nothing .... just side effects to IM opiates. Thus it is complicated. When i was told I had CLL it did not even rattle me at all ---- that was the least of my worries. But now that it is advancing, it is closer to decision time one way or another, thus why i am getting some professional advice via a pain psychologist that i have known for years, but have not talked to him since the CLL.
Thanks for your information of your GA101 treatment ... that information is helping anyone who is reading it. Please keep us posted on your treatment, and get some iron in you for your RBC's ...they have ways to boost your anemia. I will ask my wife what they are, but your Drs should know them .. regardless, will ask my RN that question. Regards, and good luck. Have to rush off to Drs. office now. Daniel
Daniel, you really have had problems. I had a knee replacement a few years ago, and now need another; I've decided not to do that. For me, it was a most painful experience, the results were good, but I am satisfied never to do it again. I'm not a brave person and don't think I could deal with that pain. My pain threshold is in negative numbers. CLL did complicate things for me...it had just reared it's ugly head when that surgery was done....but things were OK...then I had surgery on a foot and promptly got pneumonia afterward. We just don't have a great immune system.
The longer you can hold out on chemo, the better off you are, or at least I think that. Here is an article that helped me make up my mind concerning B&R: http://updates.clltopics.org/4703-bendamustine-rituxan-better-than-fcr
and then this article came out today: http://tinyurl.com/bk2kao4
This is really a land-mark decision by the FDA; it doesn't mean the use of Ibrutinib has been approved, but certainly makes it all more likely to be accepted at a rate much faster than usual. This is an oral medication: a pill a day keeps the doc away type thing and seems to be just amazing in its effectiveness and opens up an entire new class of medications. I have great hopes that my partial remission will hold long enough for this to be available to me when treatment time rolls around again. The results have been great so far, but who knows what will show up over time...and there's the rub....
BJT -- thanks again for your input/advice to putting off chemo as long as i can (many folks have advised that). Putting it off is my intention, and it helps to hear from folks who know something about it. I was a dedicated follower of dear Chaya's CLL site, and I had read the B&R report you posted about. I showed the comparison chart between FCR vs BR to my Onco, but he did not seem to interested in that, but looked at it. Glad your knee ordeal came out OK, and sorry that along with the foot surgery you had complications with pneumonia --- that doesnt sound like fun. You mentioned you were/are 76, and your WBC was up to 210 before the GA101. So, I assume your WBC was high when you had the knee 7 foot surgery? Will wait and hear how the Ibrutinib work goes ... I have learned to not wait on FDA approvals. Regards, Daniel.
bjt -- Thanks for the WBC info. I found out that in order to get this simple knee surgery I have to get Immunoglobulin infusion frist. If I had known that, I would just put off the knee surgery. I don't want any infusion. Maybe it is no big deal ... just getting some extra immune juice. Hope I am not shooting self in the foot. Regards, and hope you continue to do well. Daniel
You need to talk with your wife about this, of course, but I think the Immunoglobulin infusion would not be too risky. But then, I am not a health care provider of any sort. As far as the infusion procedure goes, it isn't all that bad. I slept or read my Kindle throughout the procedures...my husband brought me my lunch at mealtimes.. In your case, I would be frightened by the pain after the bone surgery.
bj -- thanks for input ..... infusion would just be an inconvience. The surgery is MIS, so not worried about it ... really do not know if i should get it, but by summer it would be needed, so do it now while Onco lets me. It's scheduled, so will follow threw with it. The creeping up of the serious CLL ordeal is getting my attention for the 1st time since I was dx in 2006. Its; the other medical issues and reality that CLL is here. OH well, just deal with it along with this rabid spine and GI. Hope all is going well with your treatment. Did talk to a brother in law whose Dad had 4 B&R treatments, and he is doing way way better then previously before the treatments -- just fyi .... knowing that it doesnt say anything about long term effects. Regards, Dan
BJ: I sent you a reply regarding having the knee surgery and IV infusion day before surgery, but i do not see it on this board? Sent it via my ipad since I have not been able to sit up due to knee surgery .... the knee op was 3/7, and I have been fighting a really nasty swollen/effusion knee since day after surgery. My 1991 knee surgery resulted in no swelling, and I was walking a mile 4 days post op, and never had any pain except for the evening of the surgery. This 2013 surgery is totally different. I think i made a mistake, but will wait until PT to confirm that, but again it is wayyyy different than the 1991 surgery -- I even went back and read the 1991 Ortho's office notes to make sure i was up and going ASAP in 1991. I only guess that the low number of neutraphils may be responsible for the effusion since neutraphils are the primary fighter of inflammation in the human body..
OK, just have to deal with this swollen knee post op deal whether i like it or not, but again, I think i did shoot myself in the 'knee'. Ummmm .... Please let me know how you are doing. I hope things are still going well for you. Thanks for your input/information. Dan,
Dan, I don't think there is anything "simple" about any knee surgery. The first time the knee was operated on, they did something to the cartilage....very painful and not too helpful in the end. then came "replacement".... Anytime bones are sawed, it is painful and long to heal even if you don't have CLL/SLL. I woke up during surgery from pain as the replacement knee was being pounded into bone and the pain wasn't over for a number of weeks...during which I had to do physical therapy or I would never regain much range of motion in that knee...and to think, I tried to talk the doc into doing both of them at one time! He did a beautiful job, no scaring, tiny,short, little line down the center of the knee that isn't visible unless one points it out to someone...but swell and hurt it did. They had a little machine that pumped the knee up and down as though one was riding a bike; the machine went home with me to use for some period of time several times a day, etc., the swollen taped knee complained a lot and so did I. Thank heavens the doc did not cut any ligaments; this was new and modern surgery, part of which was experimental. The result is great; getting there, not so much. Concerning knee 2, NEVER. It doesn't hurt bad enough "to play it again, Sam".
For me, things are great right now.... depending on who I listen to, I have either CR or a very, very good partial remission. It is a good spring.
BJ - just checking in. how are you doing now with post chemo life? The knee surgery I had was way harder than previous knee surgery in 1991 .... still debating when to do CLL chemo ..... do not want to do it due to spine, and now add knee not working out well at all .... not real bad, but cannot walk 2 miles as i used to do pre knee surgery. I want to make one last run at a good spinal Dr, but do not want to put energy into that as in past, but think i have a good spine guy to talk to now. Hate to not talk to new spine Dr, and then not do chemo due to spine. OK, hope all is well with you. Dan
I'm sorry your knee isn't in such great shape....knees take a very long time to heal. It has been a number of years for me, but it still hurts with weather change, etc. Given a choice, I wish I had declined.
Life post GA101 is pretty good at this time. I'll be able to give you better more accurate information after the first week in May when I will have my oncology checkup. Meanwhile, I feel a whole lot better; not ready yet to take on a lot of things, but I can do much more than I could before.... To be accurate, GA101 is not chemo. It is classified as "immune therapy". (think rituximab). I'm hoping the almost remission lasts until ibrutinib is available for all of us. Spelling is not one of my talents, but maybe you can understand what I am trying to say. (I think my brain is a bit scrambled today... too much reaction to pollen. The trees are all blooming and everything is yellow from pollen..... all the cars are yellow as well as roof tops.)
more later after walking the dog,
BJ -- Good to hear that your post GA101 life is still going well. I have been under the weather, which is totally not normal for me (regarding flu/colds/infections/etc). I have had the ortho/spine demons to deal with, but not colds/flu/infections etc. Since Dx'd with CLL in 2006 I have had some minor infections/strep etc which I never had before, or if i had them i just went on and did not know. Anyway this flu/cold? deal hit me last Tuesday and it is kicking my behind. This is like a CLL warning shot over the bow for me. I agree with you and others from Chaya's site that putting off chemo as long as you can is best, but this cold/flu? deal is not giving way as it should. Have not been in to see Onco since Jan 15th, so maybe I better see what the CBC says now vs where it was in Jan 15th. So, I might be at decision making time regarding chemo.
I have had to many medical issues going on besides CLL to even look at trial drugs such as your great working GA101. If I had more energy and less ortho/spine issues I would be very involved with CLL trial meds, but I just am out of energy to fight, thus will probably just default to the B&R chemo even though I do not like the information that Chaya posted on her site regarding B&R. I have been in drug trials in the past for other medications, so I know the rounds regarding trials. But again, just don't have the horse-power to pursue that right now. Maybe when this flu/cold? deal abates I will be more energized?
My Onco wanted me to start chemo due to 130k WBC & 100k ALC, but I have put it off since I do not have any external glands swollen, etc. maybe things are different now. Onco's major concern is treating high WBC and how it may overload the kidneys/liver etc with dead WBC's. But other Drs deal with this, just as your did with your very high 210k WBC. I assume other centers give a lite chemo to reduce the WBC so that there are not as many flooding the kidneys at one time ('tumor lysis'). Assume I will ask him when i see him. I should have put the knee job off since it has taken much more time & energy than I have right now.
Good luck on your May checkup .... I honestly wish you the best. Hope the pollen lets up there .... it has been OK here, but we had a second batch this week, but i have not been out to even see it until today when i forced myself to walk my son's dog. The knee deal has been put on hold until i can get out and walk to see if it holds up. It not weak, just worn down femur condyle. Will see how it does when i rebound from this flu/cold? ordeal. Post how your May check-up goes. Daniel
BJ - How did your follow up visit with your trial Oncologist go. I hope well. I re-read some of your notes here, as well as on Chaya's old site. Was trying to remember what was the determining factor that made you start your therapy for CLL and where was the clinic where you are trialing GA101. I've got, and have had some infections colds etc, but now this one is not seeming to abate, so may be time for me to start chemo and/or see what trials may be going on here (wish GA101 IS). . I have mentioned to my Onco your 211k WBC, along with some other folks that have had high WBC's. He was all ears since he has not had good results with high WBC's, thus he starts chemo when WBC is 100k along with 100k ALC. Thus he was/is interested in your high WBC before treatment, and I will try to see my Onco if this cold doesnt abate. Hope your pollen has let up ... we are over it, I think, BUT I have ASSUMED that 3 times, and it comes back. OK, hope all is well. GO GA101! Regard, Dan.
BJ: Thxs for your reply. hey, at least the partial remission is working to this point approx. 6 months since Dec 2012. I agree with you that there is little interest on this site due to how it is organized, but we are also spoiled due to having Chaya's site for so long -- God bless Chaya. Now, regarding your passwords and log-on ID's, here is what i do. Since this is not a bank account etc I simply name my 'bookmark' for this site with my log-on & pass-word so that when i see the bookmark it has my logon & password in the bookmark title. And I try to use the same logon and password for each CLL site. Also you can get your PC to remember your passwords and logo names for you. The easiest is to just put the password and logon in the bookmark name. Hope that helps.
I have not found a site as good as Chaya's but i did find the M D Anderson site and will send the link if you do not have it already. Their number one cancer program right now is CLL. They call it their "moon-shot' project and they are serious about focusing on CLL to find a cure to it.Here is their link. When you set up your password etc, they ask you what you want sent to you ... they have a monthly news letter, or more. I choose the monthly news letter.
I forgot to mention in my last post to you that my knee surgery is much better now that 2 1/2 months has passed, so it is not a major issue for me at this point. I did get pretty darn sick with a cold on the 22 of April, and it took me until the last few days to get over it. I never in the past had any type of cold that would keep me down, but this one did for sure. I had a CBC run and it is moving up quickly, but i honestly have not and do not know what I am going to do regarding treatment? This is due to the other spinal issues i have had to deal with, and they run a person down, but this week i have been doing way way better.
In my last post i was asking if you started your Immuno therapy with GA101 due to your CBC numbers getting critical, or just due to GA101 being a trial. My Oncologist was very interested in your WBCcount being up to 211k. He starts chemo when WBC and ALC both hit 100k, but i told him no since i have info that folks can let their WBC go higher as you have. Hope this note is not to long BJ, and I for sure hope your remission lasts a long time. Please take care of yourself, and thank you for your reply. Regards, Daniel here.
PS -- forgot the link to M D Anderson ... here it is. http://www.cllglobal.org/
bj -- I sent you a private message, but it said that your inbox is full thus the message would not go. Not sure if the message went to you or not. So, will try to send you a message here. To send a private message, go to the top of this page and click on 'Home' . From there you will see a list of 'Recent Contents' ... and to the right of the contents will be peoples names ... click on the name and it will give you the option to send a private message to who ever you click on. I agree that this site is not the easier to get around in. Dan here.
I don't know why my mailbox should be full....I have never sent or received a private message on this list. This is just a bad website and is not user friendly; it has very little to offer to CLL people so far as I can see. I didn't even know one could send a private message. The system, whatever it is, would not allow me to send one. I think maybe the best solution is to rely on other list/groups. I wish this was a more reliable, easier to use place.
BJ -- I agree this site is not very user friendly, but since Chaya's site is not being updated this site is used by me by default. I have gained some helpful information from you here, and for that i thank you for posting your information. At some point, if i get motivated enough, I will try to see if the M D Anderson CLL website is helpful. I am just getting kind of apathetic regarding pursuing CLL treatments due to my entire medical situation which started 3 decades ago. Regardless, again you have helped me with your WBC information. Regards, Dan. PS -- I hope you got some positive feedback from your May Oncologist visit.
Other forums are much easier to use: For example the CLL forum: http://www.cllforum.com
It isn't ideal, but much better than this one.