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What is the prognosis of living with CLL beyond 20 years?
Blood Cancers & Disorders | Last Active: Jun 5 3:41pm | Replies (7)Comment receiving replies
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.
Replies to "Hello Lori, First, some gooder news....the PG reacted well to the injections by the dermatologist. She..."
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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.