CLL Support Association

Hoped It Would Never Come ~ Starting Treatment

Well; the time is here. I see Dr. O'Brien on March 12 and she will give me the script for Ibrutinib. I'm a little emotional right now as I had hoped to put it off as long as possible. My numbers as of yesterday, after only 30 days since last blood draw; off the chart. I says that because I've had blood draws the last three months straight and I can't believe in such a short time they could rise so much. I guess this is the nature of this beast. So, all of you out there that know what it feels like to begin treatment know how I feel. I just need a little encouragement right now. I'm thinking positive (actually I'm trying to not think) that Ibrutinib or a combination will bring my numbers to the normal range and I'll once again feel like I did two years ago. I really don't feel horrible, but lately the treadmill is being a challenge. Carole ~ Five and a half years since diagnosis.

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Have hope, dear fellow CLLer. We ALL must Keep Calm and Carry on! It is a challenge but you can make it!

Linda

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Thanks so much for your reply. CLL has been the biggest challenge of my life. For a long time I didn't think about it much. Then, the numbers began going up, up and way up. I began researching. It was now time to think about drugs, how I'm going to pay, and a lot more. Tomorrow is a new day and a day to do and write what I need to ask my doctor, the insurance company, how the drug is dispensed, a lot of things. I will be busy. Carole

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Be happy you are finally fighting this disease! Why would you not want to set this disease back? You deserve to feel better. Youve been sick...now you are doing something about it. This notion that we should suffer until we cant take it is absurd. Better to treat before you are weaker. I started treatment and im very happy. I can live feeling well again. For some reason by starting treatment we somehow admit we have a disease. Been there done that. For most diseases we would have treated at diagnosis. Best wishes!

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I hope you recieve lots and lots of the encouragement you asked for! Here's the best I can give you after a year of treatment - we are always moving forward. I do hope treatment helps you feel like you did two years ago, and it very well might do that. Here's something to keep in mind as you focus on that goal:

When I started treatment last January I wanted to return to how I felt a year before diagnosis. That was my goal. I read here about people who never stopped working. My doctor told me about patients who return to work and feel better than they have in years, and that's what I wanted. I still do. And I thought about that as getting back to the life I had before I got sick, before I needed treatment

But, it's not what I got, at least not yet. Still, I've also realized that none of us go backward. We can't go back to the time when we didn't have CLL. We are always moving forward in life, on to the next day whether we feel well or we struggle, whether we regain strength and stamina or not, it's still moving forward in our lives. Nobody gets to "go back" because life isn't lived that way.

Even folks who are feeling better than ever have been changed by the journey. Even when CLL is curable we will still be always moving forward. And that helps me enjoy and appreciate now. At least it helps when I remember ;)

So here's the encouragement, at least I hope it's encouraging. Hold hope for the best possible outcome, but also hold appreciation for each new day, whatever it brings.

all the best,

Dmary

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Thank you Dmary. I am emotional now, but going into this with a positive attitude. Ibrutinib and possible an add on will bring me out of this. And, you are correct, we can't go back and we are forever changed by CLL. Carole

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Lovely reply DMary

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On the bright side, you were able to hold off treatment long enough to avoid chemo and all of its issues. The newer treatments seem to be a whole new world for us and it is only getting better. As long as we can get the cost situation under control, the future looks much brighter and we may actually make it out of this alive!

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Thank you and you are so correct. At least I missed chemo which I would not have liked. Ibrutinib and now a possibility of taking it with Venetaclax. CLL and treatment have come a long way in a short time.

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Eladyprescott, never been a better time for treatment with the advances being made. Best wishes and a virtual hug from UK Sparky!

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Hi Sparky,

A lot of advances in the last short time. At least I missed chemo as one reply said. Thank you for the hug and best wishes. Wishing you the best too. Carole

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Good luck Carole! I think you will do fine. You got this! :)

I was very apprehensive about Ibrutinib before starting five months ago. But must say in retrospect I don't know why. It restored my health and good blood counts very quickly, and with no real side effects. For that I am thankful.

kim

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Thanks, Kim. Great reply. Apprehensive; yes! Will hope soon after that I'll be feeling the same as you about this drug. It seems most people do very well on it. You are a good example of that. What was your ALC and Hgb before starting? Yesterday when I got my report back I was amazed at the increase in my WBC and ALC and my Hgb was going down faster than the last two draws. This is just since December. Thanks, again. Carole

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My ALC was never high in my case. But my Hgb was 65 (6.5) at start, and I had been receiving blood transfusions every 2-4 weeks for several months at that point. They transfused me again right before starting to get me up to 85 (8.5). I was no longer transfusion dependent after 30 days on Ibrutinib. And no longer anemic after 2.5 months. That makes a HUGE difference in how you feel. Wishing you the same great results!

kim :)

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Hi Kim,

The reason I asked was my results yesterday have me at 122,000 WBC, 111,000 ALC, and 3.56 Hgb. My doctor is more concerned about the Hgb and me not getting so anemic that I need a transfusion. That would have to be done if I got I into the 2 range. A lot to absorb and a lot of questions for my doctor when I see her in March. Are you here in the States? Carole

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I'm in Canada, Carole. Your units of measurement must be different for Hgb. because 3.56 would be off the chart low here in Canada where the reference range (i.e., normal range) is: 115-155 g/L for women (11.5-15.5 in US). Are you sure your 3.56 value isn't Red Blood Cells?

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I am not one who has begun treatment, so I cant offer you anything in regard to that aspect, but I did just want to send you my support and most heartfelt best wishes as you make this next step in your CLL journey. I genuinely have the feeling that this will be a positive turning point for you!

All the best,

Debbie

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Hi Debbie,

How sweet of you to send your best wishes. I, too, am hoping this is a positive. I'm going into it with positivity. My understanding from the posts I've read about Ibrutinib is most do well. I will find out on March 12 if my doctor will do a combination with Venetaflax. Seems each year something new is coming out. There will be a cure for this at some point. Thanks so much for your reply. Carole

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I'm rooting for you Carole, as I know we all will be. :)

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Thanks, Deb.

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Carole - The worst part of starting treatment is the anticipation before that actual moment when you start. The longest 5 minutes of my life were the 5 minutes sitting in the infusion room waiting for my first infusion. As New York said, denial of any kind is no longer an option, and the what ifs can feel overwhelming. On the plus side, once you know that treatment is coming the "when' can consume you. You now have that in place. and your doctor is one of the top CLL people in the country. Ibrutinib has been a miracle drug for many and the combination with Venetoclax is showing very promising results.

One of the most reassuring things about dealing with my last treatment, Gazyva, was that my doctor still called it GA101, the original trial name. We joked about all of the add on names for various drugs as they moved up the ladder. She knew Gazyva as GA 101 because she had been involved with it from the very beginning. The one thing that scares me about some of the new treatments is that there are doctors using them who really don't know enough about the treatments to be monitoring their use and dealing with any side effects. That certainly isn't the case with Dr. O'Brien. She has been involved with ibrutinib since it's earliest days. She not only knows the basics, but will be familiar with all of the options for adjustments should they be necessary - time of day, with or without food, if /when to use it in combination (Venetoclax or even Gazyva), and more.

It's OK to feel nervous about the unknown. If you ever need someone to talk with I'm just a phone call away! Let me know.

Sometimes timing is everything. I looked this up just on the chance that this timing would match. I hope you are going to be in the area for a couple of days and can attend this. Let me know if you can and I will put you in touch with my friend Barbara who is a member.

The Orange County CLL Support Group

March 13 @ 7:00 pm - 9:00 pm

|Recurring Event (See all)

UCI Medical Center in Orange: Room 113, Building 56, 101 The City Drive South

Orange, CA 92868 United States + Google Map

In partnership with UC Irvine, the CLL Society invites you to join a CLL patient and caregiver support and education group sponsored by the CLL Society Support and Education Network.

Pat

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Hi Pat,

I can tell you feel my anxiety. You are full of information and you know I am under the best of care. My concern will be when I get home to Arizona, alone, hoping I have no problems. I'm beginning to think about how I'm going to handle this and think I'll have friends call me each morning just to know I woke up. They will have concern also. As for the CLL support group, I may be able to make that. My daughter lives in Orange and I'll be there then and that would be a huge plus for me to get more information and meet people with the same issues. Thank you for letting me know. I see Dr. O. on March 12, so good timing. Do I have to let someone know I'd like to join them that night? Let me know on that one, if you will. Again, thanks for the info. I appreciate it. Carole

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Hi Carole I know how it feels to hear you need treatment. I am about to start on Ibrutinib and Rituximab on the FLAIR trial in the next few days or weeks.

I was first told around a year ago I would need treatment that year. It was such a shock as I felt fit and well and full of energy. My bloods however said otherwise.

I have had that year to come to terms with it but very disappointing never the less. I was 6 years in and on yearly appointments. I hoped I was going to be one of the lucky ones.

The time I have had in between has helped and apart from AIHA which took me into hospital I have remained well.But here we are!!!

Many people on this site have undergone treatment with great success and live well if not better than where we are at now. I focus on that and take as much reassurance as I can from keeping up to date with the literature and how much progress is being made in treating our disease.

You will come to terms with the disappointment in time especially if you focus on the outcome rather than the journey.

I wish you every success. Keep us informed of your progress.

Regards

Ann

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Hi Ann,

A lovely reply and full of wisdom. Yes; I will come to terms with this. We seem to be at the same juncture, so I know as we speak what you're going through and you me. I'm thinking positive, going to stay busy. Even now I don't feel that bad. I think I knew this was coming as my gym workout on the treadmill has become somewhat of a challenge lately. I will continue doing what I can as I understand exercise is good for one on treatment. It's good any time. I hope going in that having been gym active will help me. Thanks again. Carole

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Hi Carole glad to be of some help. You are right we are at the same juncture it will be good to follow each other’s progress. Keep posting.

Good Luck

Ann

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Will do, Ann. This is my go to place for information on CLL. We will stay in touch to see how things are going with each of us. Carole

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Dear lady prescott,

Like you, after six years on "wait and watch", I was devastated when treatment was needed. It seemed incomprehensible that this was happening to me. All CLLers empathise with you and understand what you are going through and we all offer you our support.

The times I have had most emotional difficulty with CLL have been when my expectations have been out of sync with its progress. The initial diagnosis and the starting of the treatment were the two times I found most difficult to handle.

The later stages of CLL reduce a patient's life, it becomes slower and smaller but it also becomes richer and each moment more valuable. Many of my fears were not realised. The treatments were not horror stories. The side-effects were relatively minor, I did not loose my hair. I have never had pain. In someways CLL seems benign and I cannot believe I have this serious illness. There are many things I am physically unable to do now but I find great beauty in listening to great music, seeing my sons off to school, seeing my wife come home from work, seeing the sun and moon rise.

If you are fortunate this treatment or the next will put your CLL into remission and give you more time. Unfortunately CLL is complex, with many variants and, being a fluid blood cancer, difficult to treat. The third difficulty for me has been to deal with the uncertainty of the outcome. CLL unfolds in the way it unfolds.

I have found this forum invaluable for both finding out more about CLL and for corresponding with people who have travelled the CLL path I am travelling and who willingly share their experience of the ups and downs of treatment. I hope you find comfort here, too.

Best wishes,

Peter

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Hello Peter,

Yours is a beautiful reply full of the things we all think about. I am still reeling from the fact that this is the beginning when just a couple of years ago I was being told I may never need treatment. How time changes outcomes. I thank you so much for your reply. This forum is invaluable. With just a few close friends where I live, this forum has become my best friend through the time I've been here. Wonderful people such as yourself make it so. Carole

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Hi Carole

Just massive hugs and huge encouragement are sent to you. I'm sure you will do well.

Keep us updated please.

Lovely wishes sent.

Sue

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Thanks, Sue. You are a sweetheart. A lot running through my mind today. I will get through this. Just another test as with so many others. Thank you for the reply. I will post as I progress to good health.

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Even knowing treatment was coming - I teared up when I got the news!

Virginia

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Hi Virginia,

Maybe a natural reaction. I don't know, but I was teary when she wrote back to me. I'm alone so don't know exactly how I'm going to handle this. Probably have friends call me each morning. Thanks for your reply. Carole

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I'm up early. I'll check for posts from you. ;-)

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My go to place too. Take care.

Ann

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Ann,

I've forgotten how to send a personal message. Do you recall?

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Just press on the avatar picture of the person you want to pm and you’ll see ‘send message’ in the top right corner. Send pm and that’s it.

Newdawn

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Thanks, Newdawn. You're so full of knowledge. Tell me one more thing, how do I follow a person?

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Ladyprescott, I’m not sure if you saw the helpful reply on this from MsLockYourPoss but it simply does mean clicking on the avatar picture of the person you want to follow and the ‘follow’ box comes up on the top right.

Newdawn

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Thanks Newdawn. I got it done. Carole

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Sorry don’t know I have never done this. Perhaps you could send a post out for one the administrators to advise?

Good luck.

Ann

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Wishing you great good luck with your treatment, ladyprescott! Angels for your journey. Love and hugs and all kinds of encouragement. Please keep us all posted on how you're doing!

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Hi Ohannie,

Thank you very much for your reply. All are Angels on this site. I've had so many nice replies. I appreciate you taking the time to write. Will be posting with my progress. Thanks for the love and hugs. Sweet! Carole

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Stay strong we are all here to support you on your journey.

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Hi dandelup...I am so thankful to everyone who has written good words of encouragement. I appreciate your support. Thanks so much. Carole

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To follow someone click on their avatar then follow on the upper right of their page.

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Good luck my friend. I haven't got there yet so I can't offer encouraging words of experience - but I do know we are all behind you, thinking of you and each in our own way sending you positive thoughts of support.

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Hi claree...what a sweet reply. Thank you for taking the time to write. Your encouraging words are precious to me. I will hope you have a long time, if ever, before you have to start treatment. Thinking positively for you too. Carole

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Sending big hugs to you, Carole, as you start the next leg of your journey. We're all rooting for you, and here for support anytime you need it.

Warm regards

Sue from NZ x

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Hi Sucee...Thanks for the big hugs. Yes; this is the next part of my journey. Wouldn't it be great if I got this med and never had to think about CLL again. This is such a great forum and so many supporting people with the same disease as I have. So blessed to have found HealthUnlocked and people like you!! Carole

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Hi I've been on Ibrutinib now for 1 year 8 months after a watch and wait period the same as you. My bloods have drastically improved and apart from the usual little side effects I am doing ok . I'm sure you will be fine don't spend the next 20 months worrying about CLL like I have done . Put your trust in Ibrutinib and watch it work its magic , all the very best on your journey you will be fine

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Thanks so much for your reply. I believe with all those that have written that I will do just fine on Ibrutinib. Thanks, Chuddie.

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I am still in w & w but I too dread the day treatment starts. Your post reads like something I would write if I was in your position. I guess we are blessed to have doctors and scientists who are working on solutions to cll. Good luck with the treatment and stay strong.

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Thanks for taking the time to write, Hm. I appreciate any and all replies. The first day was a bummer, I think it was Wednesday, but I'm fine now. I knew it was coming, just a little shaky to find out. A lot of new advances for us CLLers. I believe a cure is on the horizon. Carole

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I just had my 2 year anniversary with Ibrutinib had all the side effect show up at one time or another, Just like anything else in life you deal with it and move on. Living with CLL is more about focusing on what your life is about inspite of CLL not what makes it. I am a husband,father, hiker, and I love to drive anything with more than one wheel, CLL just means I have a few more doctor visits and take pills every day. When I stopped obsessing about how CLL would end my life I started living it again. If neuropathy makes the treadmill too hard ride a bike.

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Hi LarryII...thanks for the reply. Until last summer I didn't think a lot about my CLL, then WHAM I started getting hit with blood work numbers that were out of sight. I really think (even thought my doc says no), that the huge amount of stress I was under played a part. This beyond awful stress went on for six months and each blood draw was unreal. Until that time I'd been going along pretty smoothly with jumps that weren't that huge. So be it. I am going on Ibrutinib and get well. BTW: re the treadmill, it's shortness of breath (probably from lack of red cells) that's now not allowing me to do as much. But, I push on.. I want to be as fit as possible going into this. Carole

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ladyprescott, I was only on W & W from February 2016 until September 2017 and now I'm on a trial of Ibrutinib/Venetoclax. You can do this!

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Hi pk....I can and I will. I'm not sure if she'll combine the two drugs or not. Will be finding out. Thanks for your reply. Carole

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I had the opposite feeling you expressed, I was overjoyed to receive treatment. Being a true "Type A", watch and wait did not let me be in control. If my experience is any indicator, you will be seeing positive signs in your numbers immediately. Don't be alarmed if your white count goes up at first that shows the ibrutinib is working. If you'd like to learn a little more about ibrutinib please check out my article in the CLL Society Tribune cllsociety.org/2017/09/thin...

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Hi tomhenry...thanks for the kind reply. I am believing that I will have few if any side effects. Thanks for the link to Ibrutinib. My best to you. Carole

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Hi ladypresott, I will be starting Ibrutinib in 2 days. So you're not alone in your journey. This is my second round of treatment after dx 2016. Chemo last winter. Everyone here that is taking Ibrutinib, many are having great success. So my mind set is it's going to work for us. We need to stay positive. Yes there are days it's hard but I enjoy those good days to the fullest. I just want you to know we're all in this together. I will keep you in my prayers.

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Hi Cindi...Thanks for taking the time to write such a nice reply. Since we are starting Ibrutinib so close to one another, I'll be watching your success. I have the same mind set. This stuff will work and I will have none or few side effects; I'm thinking none!! Thank you for the prayers. Coming right back to you. Carole

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I have not started treatment yet, Ladyprescott, but wish you all good things. That you feel better and more positive and know that many of us out here are teaming for you.

Bramleys

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Hi Bramleys...thank you for reading my post and giving back such a nice reply. I will be posting as I progress. My initial day of finding out treatment would start was hard, but the last couple of days have been pretty normal. Have my insurance and grant in order. Now writing down questions to ask the doctor. There are and will be many. Again, thanks and watch for my posts as I progress. Carole

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Hi Carole

You are doing fine, most have to enter treatment at some time. I will start treatment in March too and I was diagnosed Aug 2017. But since mayo blood results came back "treatment not favorable", I am kind of looking forward to what can be done. May God bless you and give you strength, you are not alone.

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Hi Big...good to hear from you again. Thank you for God's blessing. I need that most of all. My heart aches when you say 'treatment not favorable'. Not sure what that means and hoping with all the drugs for CLL out there that one will fit. Take care and may God give you the strength to keep pushing forward. Stay in touch. Carole

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Thank you for your encouragement and will stay in touch. I will be going to CLL specialist Feb. 28th and hope to have better idea what my options are. May God be with you!

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It's absolutely wonderful that so many CLLers here responded, most of them wishing you well, and offering encouragement (51 responses, so far).

However, I'd like to offer my encouragement in the form of testimony for the effectiveness of the drug. We all respond differently, but virtually all posts I've read about Imbruvica are positive. And, the drug was incredibly effective for me. I was on, and then off Imb. twice (for non-CLL reasons). Both times, and when I first started it, my numbers came under control in only weeks, if not days. WBC took while to get below about 30, but then stabilized, or slowly drifted down. HgB, however, rebounded best and fastest for me, going from around 8 to over 14 (US numbers) in only 1-2 months.

Let's hope you see results as good, and as quickly. It's not perfect yet, but Imbruvica works!

Gary

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Hi Gary,

Yes; I've had a lot of replies. Everyone that has been through the initial 'finding out that they're going on treatment' have been very supportive and for the most part praising Ibrutinib. I will be one of those in a short time. My ALC is sky high right now and my Hgb is very low, so...will be hoping this seemingly miracle drug works wonders for me too. I go to the gym most days and just in the last couple of weeks the treadmill has been a little challenging. Lack of red blood cells I believe. I'm thinking positive and trying to maintain stamina for the beginning of my treatment. Will be posting as I progress. Thanks again for writing. Carole

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If it helps ... I had been through all the chemo etc. over several years (no fun at all). Was then put on Ibrutinib in Jul-17 when my WBC had risen to 59. Three weeks later in Aug-17 it had dropped to 19 (apparently normal range is 4-11). Six months later in Feb-18 it is steady at 15 & I feel well. & really no side effects. Regards,

BTW where I am in Australia there is a daily radio blog with experts in different areas. I recommend you listen to the following conversation with Australia's top haematologist, which among other things talks about results from Ibrutinib ...

abc.net.au/radio/programs/c...

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Thanks for the great reply, BSMI. Good to hear from all about Ibrutinib and seems as though hearing mostly good, and positive. Thanks for the link to the program. I'll listen to it. Carole

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