What is the prognosis of living with CLL beyond 20 years?

Welcome to Connect @traillens47. You’re looking for information of the prognosis of living with CLL beyond 20 years. From my perspective of having had a very aggressive form of leukemia, anyone living healthfully for 20+years with a chronic form of leukemia is enjoying a pretty normal life span.

Without treatment CLL and SLL both tend to develop slowly over years. They are essentially the same disease it just depends on where most of the cancer cells are concentrated. CLL is found in the blood and marrow of a patients, while with SLL the disease is in the lymph nodes. From my understanding, the distinction between CLL and SLL does not influence the outlook of the disease and they’re both treated the same as the cells are indistinguishable under a microscope.
Here’s a little informational article comparing CLL to SLL:
https://www.healthline.com/health/leukemia/cll-vs-sll

While searching for statistics on patient survival beyond 20 years, the reports I did find seemed outdated because of the changes in treatments over the past 20 years. CLL/SLL are still not ‘curable’ but with new treatments that are now available, the disease is often caught earlier and people are monitored more closely. When treatment is warranted, the newer, targeted drugs can make a huge different in slowing the progression of disease giving patients a pretty normal life span.

I wasn’t familiar with Pyoderma gangrenosum, but what I found is that it’s an inflammatory skin disease and people with underlying conditions, such as blood disorders are more prone to developing this condition. This would be a good question to ask your doctor about the relationship between your SLL/CLL and pyoderma gangrenosum. I’m not a medical professional but had AML. After treatment, I did develop a couple of skin issues that are now gone. But they were felt to be a relationship with my compromised immune system and nothing to do with the cancer itself.

Have you been in treatment for your CLL for the past 15 years? What does your oncologist suggest now that you’ve also been diagnosed with SLL?

Thank you Lori.
I have been receiving IVIG, or Privigen infusions every 4-6 weeks since 2010.
This is my second visit with Pyoderma Gangrenosum. It happened in 2016 and appeared on my leg. My dermatologist tried to diagnose it and when I showed it to the PA in my oncologist office she said it was "just a bug bite.". Ha ha. The dermatologist finally did a biopsy which confirmed PG. I underwent chemo and multiple experimental treatments and skin grafts to finally heal the PG but I was left with a large, deep scar on my thigh. Since then I have been seeing several new PA's and getting IVIG routinely. Six weeks ago I had blood work and the PA happily said everything looks fine but if you want the IVIG infusion we can do it. I began to compare test results and they didn't look right to me so I talked to my internist and he is the one that contacted the oncologist to do more thorough blood work which showed the SLL. Last week I noticed a slight itch on my face with a little sore which became quite large and inflamed. God bless my dermatologist who saw me the same day and confirmed it was PG on my face and immediately injected it with steroids. Had more blood work today and the numbers look even worse than 2 weeks ago. I'll see the oncologist Friday.
I lead an extremely active life and have managed to ignore the CLL except for keeping my appointments. This rapid change has really knocked the wind out of my sails and as I am approaching the 20 year mark Im quite concerned about what to expect . I don't know if you've seen pics of PG but it is very ugly and to have that on my face along with CLL/SLL is a frightening prospect. It really has become overwhelming and that kind of stress makes things much worse. I do wish there was more information about the prognosis at 20 years.
Thank you for your thoughts Lori. I can tell you I won't deal with a PA ever again!

No wonder you’re concerned about the return of PG on your face. You’ve been through a huge ordeal with that disease the first time around! I sure hope the steroid injection helps tamp down the inflammation to prevent further development. I looked at the photos…!

All of this happening at one time is just adding to your stress level over the changing blood numbers with the CLL/SLL. That would take the wind right out of your sails! But there is hope on the horizon. The IVIG infusions you’ve received for the past 14 years were to strengthen your body's immune system. But in my understanding, they weren’t meds specifically treating CLL.

CLL is one of the blood cancers that can take many years to develop. So this may now be where your doctor will recommended one of the more targeted meds for CLL/SLL which can work very well to slow the progression of the disease. I have a young neighbor who had CLL for about 10 years before he needed treatment. He’s now in his 40s, been on his treatment plan for several years. He and his wife have 4 little kids and they are a crazy active family. I see him out riding bikes, jogs daily, plays football with the neighborhood kids…basically, taking his daily meds has not slowed him down one moment.

My gut feeling is to tell you not to put too much focus on finding information of a prognosis past 20 years. Here’s my logic. You’ve had CLL for 20 years before it progressed to the point where it may require treatment.
CLL/SLL, with treatment, now becomes your new set point from which to base your research. The survival rate for CLL/SLL is better than for many other types of cancer and is considered treatable. Five years ago I was diagnosed with AML and it was very aggressive. The prognosis was not in my favor. With chemo and a bone marrow, I’m now in a durable remission and nothing slows me down. The projected prognosis meant nothing! I now have an equal shot at a full life just as I did before cancer. So my suggestion is to talk this over with your hematologist oncologist and find what your treatment options are. Then take the meds and focus on your future…not in years, because no one can predict how long they’ll live even if they don’t have cancer. But focus on continuing to enjoy life to its fullest…you’ll get the wind back in your sails!

If you don’t mind, would you please keep me updated? On both the PG and your CLL/SLL. ☺️

Thank you for understanding Lori and for the info about options. These speed bumps in life seem to come out of left field when you have other plans. I'll work on looking beyond tomorrow but intend to be my own best advocate and research whatever recommendations are made. IMO, a lot of PA's aren't qualified to be entrusted with the care of oncology patients. There are too many nuances to the disease.
Thanks for the pep talk and I'll keep you in the loop.
You deserve an atta'girl for battling back from a precarious condition. ✨ 🏅🎉
Carol

Hi Carol, YES by all means remain your own advocate! I’m with you in that camp! But I just wanted you to be aware that there are options ahead for you if you need treatment.

I also agree with you, that when it comes to diagnosing or being in charge of treatment for my cancer, I insisted on my hematologist oncologist. Followups were sometimes handled by a PA but then before I left the office, my case was discussed with my doctor.

And you’re right about coming out of left field when you least expect it with these blood diseases. I had the same thing with AML. I went from living life 100 mph in the fast lane to crawling at .1 mph within 3 weeks time. But that wasn’t the end of my life story and this won’t be yours either. And I am all about pep talks. LOL. So keep me in your loop!

Hello Lori,
First, some gooder news....the PG reacted well to the injections by the dermatologist. She gave it one more injection and I don't have to return for another two weeks. I do keep the area covered with a small bandaid any time I'm outside just to prevent potential damage by the sun.
My oncoloogist has recommended infusions with Rituxan and a pill called Ibrutinib. The cost of the medication would put us into bankruptcy within a month or two but the doctor said they would check to see what my insurance would cover and get authorization to begin treatment and then go to foundations and charities for possible assistance.
After that cheerful news my oncologist told me she is moving out of state but would continue with telemedicine and visits to town every 3 months. I am not at all comfortable with that and am checking on options for a new hematology oncologist.
Covid is suddenly beginning to show up here, probably due to tourists, and I'm waiting the hear from the doctor's office whether I should get a booster now or if it's too late. I don't know how long it takes for the booster to become effective and what it might do to someone who is already immunocompromised.
This seems a very unsettling time where I'm up then down emotionally. I guess thats normal but that doesn't make it any easier.
I hope you are doing well and everything remains stable. I think "stable" is the best we can hope for but that's good enough for now.

Hi Carol! I’d say that’s some gooder news with the steroid injections! In fact I’d change that from gooder to bestest! 😉 I think the advantage this time was that you reacted as soon as you discovered the warning signs and your dermatologist knew what it was and acted immediately. That has to be an enormous relief.

Rituxan and Ibrutinib are pretty standard drugs for initial treatment of CLL/SLL so I would certainly hope your insurance covers this for you. Oncologist’s offices and insurance companies deal with this all the time. My doctor contacted my insurance company and my meds were covered. There are often grants available. Have you spoken with a social worker from your oncology office about this? They can be helpful too.

I’m so sorry you’re losing your oncologist though. When you have a relationship with a doctor you trust it’s difficult to let go! You almost feel abandoned. It sounds like you live in an area where you have options for a replacement so that’s positive.

As far as Covid vaccinations go, it can take a few weeks for the body to build immunity. People who are immune compromised may have a lesser response to the vaccines. It can take much longer for vaccinations to work and often there is a lower efficacy. With SLL/CLL you’re already in that category. From the standpoint of which timing is better, if you have the booster several weeks before you start your treatment you have better chance of having a stronger response to the vaccine than immediately following treatment. However, this is definitely a decision to be made between you and your oncologist.

Now that you’ve noticed Covid making an uptick in your area, from my experience, you’ll want to mask up again in public settings that are crowded…elevators, checkout lines in stores, churches, meetings, etc.. Grab a good N-95 or KN-95 mask and your hand sanitizer and you’ll be pretty safe.

Carol, I can feel your trepidation coming through the computer. Wish I could reach through and give you a hug…
This is all new and a shock for you right now. But CLL/SLL is quite treatable and I think you’ll find life goes on in spite of this new development.

I found an article for you in the New England Journal of Medicine which might give you a real morale boost with very encouraging news about survival rates for CLL/SLL after treating with Ibrutinib-Rituximab.
An excerpt from the article:
“The ibrutinib–rituximab regimen resulted in progression-free survival and overall survival that were superior to those with a standard chemoimmunotherapy regimen among patients 70 years of age or younger with previously untreated CLL”
Here’s a link to the entire article if you’re interested. https://www.nejm.org/doi/full/10.1056/NEJMoa1817073

You’re not alone here in Connect. We have other members who have been treated with the same regime and are doing really well.
You might want to peruse the comments in this discussion:
CLL - newly diagnosed
https://connect.mayoclinic.org/discussion/cll-newly-diagnosed/

I hope you’re able to be out daily finding moments of joy! Sending you a hug.