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CLL Support Association
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I have had CLL for 30yearsand I willbe starting Imbruvica tomorrow. I have previously been on Leukeran. I am very excited to be able to be on Imbruvica.

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Hi. Welcome to our little group. 30 years! That’s amazing. Good luck on imbruvica.

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Thank you! I also receive Ig infusions once a month to keep me in a good place...I am so blessed!

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I like to read this!!

Congrats on 30 years of life with CLL! How long did you take Chlorambucil?

Good luck on imbruvica and happy new year 🥳

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I was on Watch and Wait for 3 years....then on Leukeran/Chlorambucil off and on for 10 sessions in 27 years. The sessions got longer and closer together with each session and so it was time for a change so tomorrow I do begin Imbruvica. I am excited and with change comes apprehension but I just know this will be great for me. This past year I started having Ig infusions once a month to keep me in a better place. There is a real shortage of the Gammagard that I take and I pray each month they will have it or some other brand....so far I have been so very lucky.

Happy New Year and be well!

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Thanks!

U were very young when diagnosed?

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I was 47 years old and for CLL that is on the younger side....yes, that makes me 77years just last week and it is great to be alive. Having CLL has made me a much better person....I take nothing for granted and it is great to be above the sod!

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Today is my birthday! I turned 54 years old. I was diagnosed at 48.

U just brought me luck!!

Presently on imbruvica almost 3 years. Hope it gives u as much quality of life as it has given me so far

U are also a Capricorn like me. Happy Birthday 🥳 🤗

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HAPPY BIRTHDAY to you, Lola69. 🎂 🎈

I am really very excited and I begin tomorrow. I will be happy to get the first two months behind me so I can be real settled into my new routine!

We will hang in there together!!

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This was the best birthday greeting of the day!! Wow 😮

Imbruvica will give u a long life and I am blessed! Feeling grateful. Happy birthday to you again Panz!

May you live to blow 100 candles 🎂!

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Well happy birthday Lola, I hope you doing something fun for your birthday girl. 🎂🤳

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Thank-You very much Mr. Jeff!

So far so good. Celebrated at work and more celebrations of life to follow.

This post of Panz just made my day :)). Thanks again for the wishes.

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So encouraging!

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Wow Wow wow 30 years amazing! I love to hear people having cll for this long and still going strong. How long were you on watch and wait?

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I was on Watch and Wait for 3 years...27 years for 10 sessions of Leukeran and now the Imbruvica. I am getting Ig infusions once a month and that started this past year...that keeps me in a good place.

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30 years Panz? That’s awesome. Can you share any details of your treatment course over the years? I would love to hear what treatments got you this far.

I am on ibrutinib now, I hope it works for you as well as it has for me thus far.

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How long have you been on Imbruvica?

I have had 3 years of Watch and Wait....27 years of 10 sessions of Leukeran and tomorrow I start the Imbruvica. This past year I began Ig infusions once a month to keep me in a good place...my Ig’s bottomed out and the IgG fell to 150....the Ig infusions put me in the low 700’s which is a tad on the low side but high enough that I don’t get sick. However, I must be honest I keep very much to myself avoiding all crowd or gatherings. I shop the minute a store opens so I am able to get in and out fast before there are too many people. I wash my hands until I think they might fall off. I simply have no fight on my own.

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Panz in February I will have been on Ibrutinib one year. My labs are all moving in the right direction and side effects have been minimal.

27 years on one drug is amazing. Do you know what your markers are? It always encouraging to the community to read about someone doing so well for so long. I believe you will do great on ibrutinib.

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No, I am sorry I don’t know what my markers are. I really believe that having CLL has made me a much better person....I take nothing for granted and thankful for all that I have. Any day I am able to get up get dressed go see the sunrise and take care of things is a GREAT day! Good luck to you! I know I will do great on Imbruvica!

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I am not sure what you mean by secret....sorry.

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Hi Panz

Welcome to the group... it sounds like you’ve spent a very long duration on and off that treatment protocol...

It’s definitely time for change and congratulations on making it thru 30 years of uncertainty....

I’ve been taking imbruvica for a little over two years and it’s worked miracles for me and I hope it will for you to...

The biggest piece of advice I can give you as others probably already have is to keep very well hydrated.... as long as you tolerate it, a few very minor side effects aside you’ll get a completely new lease of life...

Keep us updated on your progress and good luck..

Stuart

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Thanks for the heads up on the hydration...that was also very important when I was on the Leukeran and you can bet I will pretend I am a fish! lol

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Helps keep any unwanted side effects at bay

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30 years!! During the 30 years did you get sick at all? Did you see the doctor every 3 months? How were your numbers? Sorry for all the questions but just wondering. I found out I have CLL almost a year a go. Just wondering what others went thru and what to kind of expect. Did you follow a diet or stop eating certain things?

Happy New Year and pray everything works out well for you.

Jackie

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I have never been sick and have been very fortunate there. I did see a onocologist/hematologist and have labs done every 3 months. I was sent Loyola of Chicago for a possible bone marrow transplant as I have several brothers and sisters so I had a good chance of a match, however, the doctor there said he felt I had had CLL much longer then the diagnosed date and felt my best route was to continue to Watch and Wait and that I had until 57 years of age to make a final decision....Well, I chose to pass on the transplant and to treat as needed and I am so happy I did.

My doctor at that time told me that there was nothing I could do but to work on a positive attitude and maintain a healthy diet. So I went to work on that attitude and it was challenging at times and I have had a few piety parties but soon learned that was not in my best interest. I also,turned my attention to my diet and that needed a whole lot of help as I was a crappy eater and hated meat so I ate a lot of things not so healthy for me so I became a vegetarian.....I hated all meat except bacon but I wasn’t getting the protein I needed...so that was a project of a huge proportion!!! It made me focus on something I could control and I needed that.

I have had 10 sessions of Leukeran over the period of 27 years and in December the labs pointed to needing some change and I had received warning back in July tha come the end of the year I would be needing to address the labs and sure enough there it was. My Michigan doctor and my Florida doctor had both said it was time for Imbruvica and so tomorrow I begin.

I also started Ig infusions this past year and they keep me in a good spot. My IgG’s tanked on me. There is currently a shortage of the Gammagard so each month I say a prayer and cross my fingers there will be one for me and so far I have been very lucky. I am due on January 15 so we shall see.

Everyone is different and we all have a story but we do support each other. I wish you only the very best and you remember each day is a gift! Hang in there!

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I too turned down the bone marrow transplant but my bro was only a 20% match.

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Thank you! Your story is so encouraging. Thank you for sharing. I wish you the very best and each day is a gift!! I believe we will be fine!!

Thank you!!

Jackie

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Your 30 trumps my 17. Congratulations! I’ve gotten IVIG for all 17, as my IgG was @250 when I was diagnosed and I was sick all of the time. It has been a Godsend for me.

One thing I learned from a conversation between a nurse and another patient is that if you ever have a reaction, change brands. It’s not that one brand is best, just that different people react to different brands.

I did, after about 7 years, have a very minor reaction to one brand, minor in part because I said something right away and the infusion nurse was right on top of things. That brand went on my list of drug allergies, and I haven’t had a problem since.

I thought I was reacting, not too long ago. It turned out that I have developed an intolerance to Benedryl. One 25mg tablet and I was spacy. I now take 10 mg of Claritin and all is well again.

700 at my lab is low normal. I usually get up to there, then start sliding back down between infusions, but this year is the first time I have had anything more than a few minor, allergy related, sinus infections since starting - one minor virus. I hope that the infusions work as well for you as they have for me!

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We are very much alike....I had been at 250 IgG’s forever and seldom ill, however, they then fell to 150 and I go rather sick...with infusion I reach 700 and then begin the decline. I am now getting infusions once a month. There is a shortage going on that is a little concerning but so far I have been able to get one...ny next one is January 15 somtime will tell. I do keep a very low profile and avoid all crowds. Hang in there and stay well!

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I'm a Capricorn also. I'm 84 (85 next week) diagnosed with non-Hodgkins Lymphoma which eventually turned into CLL. I was on chemo for four years and then put on Imbruvica four years ago shortly after it was approved. Have been doing well and feel very

fortunate.

Very

Fortunate. Happy Birthday and

Happy New Year!

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May you continue to do well...every day is a special gift. Happy Birthdat and Happy New Year too!

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All the best to you and have a wonderful 85th birthday next week!!!

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Happy Birthday 🥳 Capricorn ♑️

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Hello Capricorn!

Do you have SLL?

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I have CLL and have been on Imbruvica for four years - with some side effects, especially fatigue from time to time, but have been in remission for quite awhile. My oncologist decided to start me on IVIG infusions a couple of months ago for fatigue and to help my immune system. The first infusion helped and I had another one five weeks ago. I will have a blood test next week and depending on my numbers I may have another infusion. So will have to wait and see.

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I am super tired and can sleep 10 hrs.

I also think the Folliculitis is coming back.

Do u think these infusions help!? They have side effects.

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What infusions are you referring to? I only get Gammagard and that is an IgG infusion and yes they are huge for me.

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IgG

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I took Leukeran off and on for 27 years for a total of 10 sessions. Tonight I just took my third Imbruvica 420mgs. So far it is going great...I always fight fatigue. Also, I get Gammagard every 4 weeks and it is huge for me as it gets me to 650-700 which is still a tad low but with out the infusion I am at 150 and not feeling real great.

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Hi Panz,

Thank you so much for posting! I just love what you wrote below:

"Having CLL has made me a much better person....I take nothing for granted and it is great to be above the sod!"

I wish you all the best and much success with ibrutinib. Please keep posting and keep us updated.

'it is great to be above the sod' - that is priceless. Thank you!

D.

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Which dosis Leukeran and which long time one sessions?

I had Leukeran (Chlorambucil) 1-7 days o.2mg/kg.It was 4 months Leukeran alone-but it is not work.After I was Leukeran+Rituximab (6 months)+ 6 months alone Leukeran.I am in PR.

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My first hematologist wanted to give me leukeran ( chloramucil)

My present hematologist said it is given to an older clientele. 85+.

I guess 30 years ago there were not many therapies to choose from.

Still find PANZ story amazing though.

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You are right 30 years ago Leukeran was the only oral treatment...everything else was infusion. I was 47 and he put me on the Leukeran and sent me to Loyola of Chicago, one of a very few centers that did bone marrow transplants other then Dana Farber in Boston and Baylor in TX. I was given the choice of a transplant but chose not to and the transplant doctor agreed I was making a good choice and if I changed my mind to just come back and he would do a transplant for me anytime before I turned 60. Well my regular hematologist saw how well I did on the Leukeran that was the drug of choice for 27 years and here I am about to take Imbruvica tonight at bed time....hope I do as well as you!

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You will do great!! What time will u take it at?

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Around 10:45-11:00pm

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I was always on 2mg. a day and usually for two or three months.....then off for about two years and then when white count got over 75,000 I would be put back on it until the white count was down to about 20,000. As I may have said this happened over a 27 year period. I was very fortunate that it worked that long for me as I was told it would loose its effect and I would then move on to something else....well, that day is here.

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That’s great to hear you’ve done so well for 30 years. And I wish you the best with the new medication.

I was asking a question a few days ago regarding people diagnosed at a younger age. I was 47 last year when diagnosed by chance with SLL and and on watch and wait.

My question was in short , most data is based on people’s life expectancy is based on a person being diagnosed in there late 60s. Your situation fits my question as you were my age at diagnosis and are 30 years doing well. Have you heard of others that were diagnosed at your age and are 30 years living with SLL / CLL ? Thank you in advanced.. John

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John, I really have no answers for you, however, my husband has a high school long time friend that has had what I think is the SLL/CLL you refer to for well over 60+ years....we have lost track of him but understand he is still living and he would be 80. I know nothing of his treatments so I am not much help to you but I have always taken great comfort in just how long he has fought this. I keep a very low profile and stay away from gatherings/crowds due to having had very low Ig’s. Just last year I started taking IgG infusions once a month and I am able to stay healthy. My original doctor who left his practice and went into research simply told me that I could stand a better chance with the fight that was ahead of me if I considered two things 1/mainten a positive attitude 2/work on a healthy diet and keep all immunizations updated. I would add 3/work hard at supporting others with CLL. Each day is a gift and today is the first day of the rest of my life. The very very best to you...you will do fine you must believe that! Take care!

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Wow 60 years that is awesome. Did you feel good while you were being treated Panz?

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I have had CLL for 30 years. I do feel great other then the fatigue and I avoid gatherings and crowds. I never had issues while being treated.....very fortunate!

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your hemoglobin is always low?, even after treatment?

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My hemoglobin rarely hits the low normal...it runs around 11-11.6. Once in a Blue moon I might hit 12.....Even following treatment.

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Seems to be just slightly low as 12 would be within normal range.

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I take a strong Rx for iron/B complex called FOLIVANE-PLUS PO without it I am at 9.5. Plus I eat a lot of iron rich foods, I am a vegetarian which means I must work hard to stay in a good place.

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So the Leukeran worked for you for 27 years that is amazing.

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Back then Leukeran was the only oral treatment....everything else was IV. I was very fortunate that it did the job for me, however, both of my hematologists agree it is time to go one step up the ladder of treatments offered today and so I begin with Imbruvica 420 mgs. I am so happy and so far no issues!

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My Imbruvica was just delivered....

So let the party begin. I will be taking it just before bed as that worked so well with the Leukeran. Have a super rest of the day!

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Capricorn ♑️ all the best!!

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You had lymph nodes or no?

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Not very often but from time to time and they are located deep in the arm pits, one in the groin and in my neck.....I monitor their size but there isn’t much change.

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