CLL with with WBC over 100,000

[Saber21]

This is my first post. I was diagnosed with small B-cell CLL in 2009, at the Cleveland Clinic. The doctor thought he was reassuring me by saying, "I have seen patients live ten years with CLL." I have no symptoms at all but in the last 12 months, my WBC has gone from 12,000 to 101,900, with a jump of 25,000 in the last six weeks. I am seeing an oncologist in my home town but have requested an appointment for a second opinion at the Moffitt Cancer Center in Tampa.

[AussieNeil Administrator]

Welcome to our community Saber. You have already made the best move in seeking a second opinion. The post below goes into the triggers for starting treatment, but the truism with CLL is that the specialist treats the patient, not the numbers. CLL specialists look for other, more compelling reasons for starting treatment in addition to a fast rising lymphocyte count (more accurate than a WBC), because it can happen that your CLL can settle down and remain stable or even sometimes reverse in lymphocyte count. By the way we have untreated patients in our forum with lymphocyte counts multiples of yours. The highest I've heard of is 1,400,000!

healthunlocked.com/cllsuppo...

Neil

[Saber21 in reply to AussieNeil]

Thanks for the encouragement.

[t2aa]

Welcome to this very supportive community. Getting diagnosed is quite daunting and scary, however, you will soon find this is a marathon with new treatments being developed every year. Things are looking up and CLL patients now have life spans very close to the average, however, 2/3 of us will need treatment to achieve that.

My best advice is get a good CLL specialist. Ask every question you can think of. Get yourself in the best physical shape you can so when you need treatment, your body can handle it.

Also, you will have ups and downs, physically and mentally. This can be daunting some days and no big deal other days.

When your immune system is good, travel, go to concerts, live your life! When it is on the down side, find a hobby you can do at home. Keep your mind and body active.

Scan through the archives and pinned posts on this site and you’ll find so much helpful info. Just watch the dates on internet info as things even two years old is already hopelessly outdated.

Your journey will be uniquely your own as we all react differently to this disease and will need unique treatment. Direct comparison is hard to do, and it is not a race or competition. Like I said, it is a marathon, so prepare yourself for the long haul! Which really isn’t much different than preparing yourself to live a long life despite some other maladies like heart disease or diabetes. It sucks, no doubt about it, but you can do this!

FYI, there are folks on here who have had CLL 20 and 30 years!

[Saber21 in reply to t2aa]

Thank you for your reply. I will be 75 in November, so some would say I have already lived a normal life. I am so glad my daughter found this forum for me.

[LovecuresCLL]

Just read on this website as much as you can. It is a life saver.

Welcome and do not worry . You are on the right track!

-John

[MsLockYourPosts Passed Volunteer]

Are you in Ohio? Ohio State has one of the best known CLL research teams in the country. Maybe Florida because you have moved there or have family you can stay with. Both Moffit and the Mayo in Jackensonville have CLL specialists.

A good resource, in addition to this site is cllsociety.org - everything from the basics to latest research. The Society is also creating in person support groups around the country - definitely something worth looking into.

[Saber21]

Thanks for the info. I lived in Ohio, for nearly 50 years. Cleveland Clinic discovered my CLL when I was there for testing of my idiopathic neuropathy. Then I went to OSU for treatment of the neuropathy. I now live in Florida, and will be going to the Moffitt Cancer Center starting later this month. A group bringing a class action lawsuit against the USAF believes my problems were caused by a faulty bearing that leaked oil fumes into the cockpit air supply of the F-100 Super Saber that I flew for several years.

[Kokobean]

Welcome! You did the right thing by making an appointment at the cancer center.

Keep us posted.🙏

[Saber21 in reply to Kokobean]

Will do.

[ladyprescott]

Good Morning, Saber. You have come to the right place for great information on CLL. Welcome! I was diagnosed in August 2012 and was on watch & wait for 5-1/2 years before I started Ibrutinib in June of last year. My white count was 122,000. When I began the meds my white count went up to 188,000 and then began coming down. As of my last blood draw it was 17,000. I'm happy to see that you're going for a second opinion hoping it's a specialist in CLL. They may want to start you on some kind of medicine since your white count is rising. Keep us informed and ask any question that comes to mind. There are no dumb questions here. My best to you. Carole

[Saber21 in reply to ladyprescott]

Thank you for the encouraging words.

[Smakwater]

Saber21,

As you may be aware, one Rai measure for progressive disease is your lymphocyte doubling count. It appears from the information that you posted, that your doubling time exceeds that criteria.

From NCI and IWCLL Guidelines - Progressive lymphocytosis with an increase of >50% over a 2-month period, or an anticipated doubling time of less than 6 months.

If the doctor statement that you mentioned occurred after reviewing the numbers mentioned, You most definitely need to see another oncologist. Preferably a CLL specialist.

JM

[Jeaniep46]

Good afternoon Saber, you’ve gotten some good advice already. I was doing diagnosed in 2007 stage 60. I had been seeing a hematologist/oncologist in NY that wanted to start treatment in 2011 because of rising WBC. I sought another opinion with Dr Kanti Rai head of CLL Research in NY and considered the God Father of CLL. He told me although I had poor markers CD38 and unmutated that he was not quick to treat and said we will continue to watch and wait. So we watched and waited as my counts continued to rise. In 2016 my hemoglobin and platelets we’re slowly falling but because I still felt well he said we will watch and wait. In August 2018 my hemoglobin was around 8.5 and platelets around 100 and WBC over 300,000. I live in Florida so had to start treatment in Florida. He said I should be no more than an hour away from treating hospital and doctor. He recommended Dr. Julio Hajenberg in Orlando. Started imbruvica September 2018 dose 280 mg because of my multiple drug allergies. WBC rose to 697,000 WBC. Started feeling better in about six weeks. Still on imbruvica and pray I continue to do well on it. The point is don’t worry too much about WBC rising if you are feeling fairly well and hemoglobin and platelets not too low and do see a specialist. Keep us posted.

[Saber21 in reply to Jeaniep46]

Thank you for the advise. God is good and I have a lot of people praying for me.

[4Glory]

Hi Saber21. Welcome to the group and thank you for your service to the USA.

[Saber21 in reply to 4Glory]

My pleasure.