I’m supposed to get a call to start acalbrutinib next week I’m 28. I also have a test to find out if I’m igvh mutated, just waiting on results. My WBC has gone from 35-125 in 7 months. I’ve also gone from almost no symptoms (besides slight lymphadenopathy) to pretty much all the symptoms….(night sweats, lost 14 pounds, constant fatigue, my lymph nodes are huge) but my rbc and platelets are still stable, but who knows how long that would last with my stuff going crazy. I’m just stoked to not feel like hot garbage so starting treatment sounds pretty good. I’m nervous about the windows of time they work being so young but it’s not like there’s a whole slew of other options out there.
I guess it’s really rare I’m this young but also rare that it’s progressing so fast. Just figured I’d share situation cause I haven’t found many to compare to. If anyone wants to link or talk I’m always down.
Written by
Palacialregalia
To view profiles and participate in discussions please or .
God bless in your struggle as you begin this journey. Are you seeing a CLL specialist? I feel that is very important for you at this time with being so young and the progression you seem to be experiencing. You must keep the faith and remain strong. There are just so very many treatments out there and with the help of a specialist you will find your way. This is one of the hardest things you will face especially being so young. Get your vaccinations updated, eat healthy and work hard at being positive!!! You WILL get a handle on this but it doesn’t happen overnight…..please stay in touch with our community as we are very fortunate to have some very intelligent and caring people. So very happy you found us!! All the very best to you!
I’m not seeing a specialist because of my insurance! But open enrollment is February so I’m hoping to switch to something that covers more. The reason no one is offering me chemo is because I am young and have 40+ years to live with the aftermath of chemo. Also the pandemic! I live in California so it’s pretty bad here. If I got sick in chemo it probably wouldn’t be so good, and the risk of me getting sick are relatively high here. Thanks for your help! Hopefully the future brings some ease
I wish you all the best luck in the world with your upcoming treatment. I'm very hopeful that new treatments will continue to pop up until a functional cure is found! Just hang in there. Acalabrutinib is the safe-bet treatment. If it turns out you're IGHV mutated with the right configuration of FISH result, they might offer FCR as an alternative. But Acalabrutininb as first line of treatment is good as far as I've read.
And please drop by from time to time and tell us how you're doing, with the bad and the good
Yes. For certain people (mutated ighv, no tp53 mutation, no fish abnormalities) it can be a cure but for most it's not. Furthermore FCR affects other systems too and it might be the cause of secondary cancer. I told my doctor from the first visit that I don't want any FCR if possible.
Yeah that’s what I was scared of as well. But my doctor told me I won’t have to do it since I’m young and healthy it would mess me up in the long run. I think I’m just gonna kind of take each med as it goes and hope something else comes about
I have no doubt that there will be other pills which will be added to the arsenal. However, I'm really hoping for a therapy which will cure us in the not-so-distant future.
Hoping for the best for you. Acalabrutinib is working very good for me Hope it does the same for you. I second Panz's suggestion to research and find a CLL Specialist. It will make all the difference if it is possible for you to do. Getting a CLL specialist was a life saver for me.Bill
Wish you good luck as you start this treatment which people report as yielding good results !
The suggestions offered are good ones - the support you can get on this site is very helpful .
Please remember that we care and let us know how you are doing - We are here to support when you are feeling down and to celebrate with you as your treatment gets you back to enjoy all the other good things in life!!
Life is anything but fair. Nobody should get this s*** so early. Anyways I'll be praying for the acala to bring you back into good shape. And the scientists to come up with a cure for the benefit of at least the young people like you.
I am alsi in California. Are you aware that you can get a free consultation with a CLL Specialist thru Leukemia and Lymphoma Society? I used it; it was wonderful.
Sounds like you are on top of it. I was rather young when diagnoses but they feel I had had it awhile….at that time our insurance was not the best and available treatments were so very limited. I have been on Leukeran off and on for 17 years and that was the only oral chemo at the time and yes it destroyed my immune system but it did keep me I. A good place and I had one child in college, one in high school and one in junior high. All I wanted was to see those kids grow up and be on their own and it happened!!! I have been diagnosed for going on 33 years. I was on Imbruvica for 6 months and developed two types of pneumonia at the same time in both lungs and they pulled me off but my numbers held for 2 1/2 years and now I am on my 4th week of Acalabrutinib and doing just fine.
I am praying that you are able to get your insurance around and in a better place to give you what you need. As far as the meds go not to worry about the cost as there are grants and other aids as well the company that makes the med you are put on. We got to get you in a safe and secure place and no Covid is not our friend at all. I live in FL and we too are a very hot spot.
Oh thank you for the reply. I’m glad that acal is working for you! And I’m in the same situation my son was born 3 weeks ago so it’s like another pressure on me. But it’s keeping me more positive. Thank you so much for sharing your side it does keep me a bit more hopeful than otherwise.
You my friend must always remain hopeful. At your age I fill believe you will live to see a real cure….I feel thy are real close!Plus you have everything to live for it’s that family of yours.
Please stay in touch. You have indeed found a great super community!!!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I’m scared of treatment
Dizziness when getting up too fast or bending over. 
6 Years W&W...
CLL Treatment Advice/Recommendations/Etc For Newbie
a diagnosis at last 
