My Oncologist suggests it may be time to begin treatment with targeted therapies. I can find a slew of information regarding side effects of each of the drugs. What I can’t find anywhere is a detailed account of what I can expect will happen to my body if I simply refuse treatment.
Can anyone share what may be in store? Is there any statistical analysis regarding survival rates for not treating?
A very interesting question...
If you do not treat cll cells will overwhelm your marrow where your good blood cells are made. Your hemoglobin will drop and as your organs lose access to oxygen, you will start to lose energy and feel like you have a permanent low grade flu. Your platelets will continue to fall and you may have bleeding events.
You will likely develop what is called b symptoms where you feel bad and have drenching night sweats. as your immune systems weakens, you may become prone to frequent and hard to resolve infections. Your spleen could get uncomfortably large and you may develop multiple nodes, some that hurt, some that do not.
Unless you have truly indolent and slow growing cll, left untreated it will shorten your life, most likely from some infection that turns septic.
Its hard to sugarcoat it. If you are at the stage you need treatment, you are probably at the stage where not treating results in a gradual, or perhaps not so gradual, worsening of your health and then death.
Particularly in the age of targeted therapy, I cant imagine why you would even consider not treating. Good luck and I sure hope you decide to treat. Treatment for me has not been that hard.
Thanks Jeff, trying to weigh all options. If this country had equitable pharmaceutical costs it would lessen the burden, can’t imagine bankrupting our savings to the tune of 10k each year which is my OOP for healthcare in the richest nation in the world......what a system but I degress.
If you are on private insurance (not medicare) you might find that your cost for these very expensive meds are zero. I have not great insurance but due to the specialty pharmacies and the drug companies my cost on acalabrutinib is zero. This is less than any other "regular" med I have ever taken. This was not explained to me at the beginning so I can understand being concerned about major costs. I only found this out from the specialty pharmacy my insurance company did not know about it.
Part D of Medicare and a foundation totally paid for IB for the 3 years I took it.
I agree with sllincolorado. I also have terrible private insurance with $10k OOP but I pay $0 for acalabrutinib. When I spoke to AZN on the phone, they said anyone with private insurance (USA) should pay $0. calquence.com/patient/suppo...
I have private insurance (my OOP is not as high as yours), but because I was private insurance, I qualified for assistance with both Ibrutinib and Venetoclax...my cost was $10/month on Ibrutinib and $5/month on Venetoclax. It was a huge blessing, and the pharmacy at the cancer center applied for me...I didn't have to do any of it.
How many years have you had CLL? Why is your Dr. suggesting treatment at this time? What are the drugs he is suggesting. How old are you and do you have other diseases to be considered?
(if you will go to bottom of your post, click more, choose edit, which will open your post and let you edit---scroll to bottom of the open post and click on (only to this community, you post and the replies can only be seen on this community and not be seen on google.)
Diagnosed late in 18 but bloodwork suggests I had it in early 17. Two conditions exist that concern me with the primary being arrhythmia. In late 2015 I had two heart ablations which corrected the issue, don’t want a return. The second being I’m a Bariatric patient some 9 years removed from surgery which I believe is playing hell with my ability to properly balance vitamin levels under CLL.
So, complications. Most of us have some complications. But I agree in regard to the worry about afib. I am assuming your Dr. wants to treat with Ibrutinib or acalabrutnib for one of the meds. And, those are what I would also fear in regard to your already having had afib. Does you Dr. understand that fear and does s/he have another posssibility for treatment?
Have your CLL Dr., Cardio, Primary Care and endocrinologist had any consultation in regard to your possible treatment? If it were me, I would ask them to talk among themselves for a better picture of your overall health.
Of course, I don't know what your CLL profile is or why you are being proposed treatment so soon after diagnosis, but I would also be asking why treatment is being proposed now. And ask the Dr. directly, what if I don't start treatment now?
What will most likely happen. Are there other treatments suitable for my CLL that do not have noted side effects of heart/afib?
I do think what cajunjeff has described might be pretty accurate, the timing of any happening, however, is varied from person to person--and what may happen is, of course not known for certain for any of us. I do want to say, also, there are able and very helpful Palliative care teams that can help when the time comes, as it will for each of us.
Best wishes for a fruitful conversation with all your Drs. and then maybe you can have some reassurance and better make a decision.
Mutated or unmutated?
Here is a Drs. answer to the question:
everydayhealth.com/leukemia...
Good site. My doctor is thinking it may be time to start treatment based on lymph nodes and enlarged spleen. I get a CT scan at the end on the month. He is thinking V&O. My research shows its a good option. Haven't checked Medicare coverage yet. Other concern for me is waiting until Covid 19 is over to reduce complications. I was diagnosed Dec. 18, 2019 and probably had it for a year at least before that. I am at Moffitt in Tampa Fl. USA, and have not had a second opinion.
Analeese, are you seeing Dr. Javier Pinilla-Ibarz?
If so, he is listed on CLL expert lists and comes very highly recommended as a hematologist/oncologist.
If you aren't seeing him, I would suggest he be your second opinion.
I am seeing Dr. Sallman. He said they work together as a team. All treatments are ran past Dr. Pinilla. Would you still request him as a second opinion. It would be a lot easier than going to Jacksonville to Mayo which I have considered.
So, if they are in the same facility and do confer on each case, you are most likely getting the benefit of a second opinion.
You would probably be best served to write down your questions and ask Salman those questions--the specifics of why you are needing treatment now, what are the risks of waiting, what are the pluses and minuses for each medication that he sees, and state your worries with what you have read and about the Coronavirus and treatment.
If you do not feel secure after getting some answers, state that you would like to hear what Dr. Pinilla has to say---if you do talk with Dr. Pinilla you can get a feel for which Dr. communicates in a manner you feel is best for you. There may be a way to then have Dr. Pinilla as your Dr. But, you will at least then have two Drs. expressing their opinions and explaining that should help you in your decision.
There are groups of Drs. in which one is more research and may have limited spaces for new patients, so know that up front so you won't be disappointed if that is the case. You WILL have the benefit of the two Drs. in your corner if they collaborate.
Best wishes. Give it you best shot, know that some never have a choice, let alone two Drs. with one of them a noted expert.
Let us know how things go. But, make it a separate post so all can support you.
****The following answer may prove distressing. Please do not read further if you are likely to find this discussion upsetting. ****
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If your death is caused by bone marrow failure, how you die depends on what blood cell line fails due to bone marrow infiltration by CLL. Haemoglobin dropping below 6 will eventually cause organ failure, as your organs won't get enough oxygen to keep functioning. Platelets dropping too low sets you up for fatal internal bleeds. Transfusions might keep you alive for a while, but they aren't risk free and platelet infusions only last a few days. Falling white cell counts put you at risk of dying from an uncontrolled infection. If it is bacterial, then you have to hope it's not hospital acquired and possibly resistant to antibiotics. Fungal infections are tough to treat and antifungals can have distressing side effects. Viral infections rely on our ability to make lymphocytes where we don't have antivirals. Antibiotics and antivirals also suppress bone marrow production, so treatment for infections can just precipitate bone marrow failure.
Swelling nodes can cause problems with organ function by interfering with blood and nerve supply and so on.
The above scenarios are also relevant to when we become resistant to all available CLL treatment drugs, sadly. We can be thankful that we now have a range of very effective CLL treatment protocols with a range of ways they kill CLL cells, so we can switch classes when we become resistant to a particular drug.
Relevant to this discussion is the danger of refusing proven treatments and placing our hope with alternative (i.e. unproven) treatments. If you keep down that path, then you can expect death by one of the above means. Further, if you eventually realise that alternative treatments are not working and agree to accept a proven treatment, because all CLL treatments have the side effect of suppressing bone marrow function, you set yourself up for a higher risk of death by one or more of the above bone marrow failure scenarios, plus you leave grieving family and friends wishing you had accepted well proven successful treatment protocols.
Neil
Thank you for the warning at the beginning of your post. Very sensitive and responsible. Wish there had been one in the booklet I was given upon diagnosis which touched on the subject of how cll can prove fatal and which scared me silly when I read it! Sleepless night and tears of sheer terror....
Thank you for that very thorough description. For years I tried to get that our of my doctors. I hate having surprises sprung on me. I wish our docs could talk like that to us.
Neil, thanks for the straightforward information. It was exactly what I wanted to know.
When imbruvica failed I was hospitalized for sepsis. I got blood transfusions and other medication and was told organs were shutting down. After getting stabilized and treated for infection and out of ICU to a 'regular' cancer bed, I finally got out of the hospital. I got another transfusion and during the couple of weeks wait off of specialty drugs prepared to start a new drug, venetoclax, I walked slower than a sloth, my feet were dragging, I had zero energy. I was also unsteady as I walked. A quick easy walk (on imbruvica) to a nearby store that I made many times before became a 'this is a mistake' and 'why did I try to walk' very long tiring ordeal with many rest stops. I didn't feel safe with driving myself anywhere, as I had no strength to push the gas or brake pedal for very long (found out when I manually had to lift my leg to move it to the brake pedal (another 'this was a mistake moment'). People at work would ask if I was alright as I dragged my feet along at slow motion sloth speed around the office.
Quality of life is so much better when on imbruvica and now when on venetoclax
Amen brother Scott, too many fingers in the pie which ends up in the patients face.
Moving towards treatment. CLL was why I spent 3months in ICU from April - July 2016. I was put on W& W. I had some treatment after inc. IVIG for 6 months of year. Slowly my counts went up, bruised easy, tired, sleep deprived, frequent night sweats, frequent low level infections, occasional high level chest infection. Constant antibiotic, occasional steroid & antiviral treatments - all with side effects. ( diabetes being most significant). Finally push into treatment was a pleural effusion & feeling like shit for 5months - painful swollen lymph nodes frequently neutropenic & picking up one infection after the other and then having various chest biopsies, CT scans x-rays later - I started treatment Ibrutinib & venetoclax. Minimal side effects - within 6wks all above symptoms had dissipated - no treatment for me would have been more of the same & rapidly worse, which you are welcome to.
When I say minimal side effects - I sat on the loo more frequently one morning, I felt slightly dizzy for a week or so & I get petechia- oh yeh my gums bled a bit one evening.
When you are totting up the scores on each - include people with no or minor side effects too.😀
Thanks Sepsur, that’s exactly what I’m attempting to do tally.
Sad to say it, but most likely death 🙁
It doesn’t need to be like that with all the treatment options available.
Win
This was an excellent question. I'm glad you asked it because I've been on W&W for 4 years now and was expected to go on treatment a while ago already. Planning this isn't something you do for yourself, it's for you wife and family. I asked, do you spend it all in hopes that you can eek out an existence, or do you draw the line somewhere? Most of the hopeless medical situations I've seen in our community, the wife/husband or family will convince the sick person the keep on trying no matter what the cost. Its a hard track to avoid when you see how your sickness hurts the people close to you.
We all have to find our own path and it's never easy. Good Luck,
Jay
I think the cost of treatment and the impact that can have on a family and their finances is a very real problem, no doubt.
I am on ibrutinib and it not only allows me the ability to work full time and support my family, it also allows me to have a very good quality of life. Before covid, I did just about anything I wanted to do and plan on getting back to that once the covid issue resolves, and it will one day.
I don't see myself as "eeking" out an existence. From what I read we have many members in watch and wait or being treated who are learning to live with cll and having a very good quality of life, all things considered.
Your absolutey right Jeff, I didn't think of it from that perspective.
Hi, was diagnosed with CLL and non Hodgkin and given 8 years to live on that stage of the illness. That was 17 years ago! Had chemotherapy back then, and recovered well. 18 months ago I was put on Ibrutinib and Privigen. Also, Daspone to protect the lungs, ( as I'm allergic to Septrin), which was the first choice. I'm under a haematologist with a great knowledge of blood disorders.
I slowed down over a number of years, until I nearly came to a stand still, with lots of colds, but no bad symptoms. Enlarged spleen and nodes everywhere, but didn't have any pain, or even noticed what was happening. The wife said I was lazy, wanting to sit down and read all the time. Red blood cells crowded out by B cells in bone marrow and in lymph system. The CLL developed very slowly, but I was too ill for chemotherapy, so they gave me steroids. I went from zero energy, to bouncing around ready for anything. Can't remember the chemo name, but there were no side effects., though I think it damaged my immune system.
Some advice is to make sure someone is around when you take a new drug, so they can watch what happens, and you can get them to run you into hospital if you react badly.
After 15 years I had a bad infection, went deaf, couldn't breath and didn't sleep, so needed Privigen and Ibrutinib.
I lived in the US for a while, so I know about the insurance problem. Thankfully the expensive drugs and treatment are free here, as the NHS is paid from taxes.
Can you ask for a second opinion on insurance? Different doctors have their own ideas on when to start treatment.
Good luck and recount your experiences, it might help others, Gary
Hello Pokerguy
It is just like poker, every treatment has its possible side effects and risks. I understand both your concerns with cost in USA and A-Fib. I have private insurance so costs where covered. Contact Leukemia & Lymphoma Society they can give you a lot of information on costs and programs. The side effect percentages with inhibitor drugs and life time on drugs pushed me to B+R and very glad I did. Keep in mind there are more treatments being tested every day. One advantage we with CLL have is it is one of the easiest cancers to track so a lot of cancer research for other cancer starts with Leukemia. AussieNeil explained path if not treated and it did not take me long to figure that out without doctors explanation. Blessings, I know it is hard decision, all here have considered same.
Its nice to hear from you Big_Dee. Pl recall, when I was in a dialoma in taking a decision either to opt for BR or IB, quoting your BR experience, you encouraged me to head for BR.
Accordingly I had opted and taken two cycles (Jan & Feb 2019) were uneventful. But later I developed skin itch (EPF). As my Neutrophils went down abnormal furthe my BR cycles were discontinued. The good news is that with these 2 cycles of BR, sofar I am under good remission with improved quality of my life except skin itch (which I am not worried much) I thank you my friend for your right advise at the right time. Trust you are also under full remission by now. God bless you
Hello attarintiki
Glad to hear from you, sounds like you are doing well. I developed a rash on 1,2 & 3 BR treatments, recovered in 1-3 weeks each time. 4th through 6th treatments were relatively uneventful. I am great and in full remission. My WBC when from 197K to 18K in 6 days after first treatment. Coming up on my one year treatment anniversary this month. I am in full remission and my 13q deleted is now 13q normal. Blessings.
Pokerguy,
As you know the probability of a royal flush is approximately 650,000:1, however, the probability of winning the pot is very good if you know how to play the game. Not to treat upon reaching treatment stage is like betting it all on a pair of two's in the first hand.
With CLL whether one chooses to treat or not, death is inevitable, individual, and inexpressibly personal. A nice way to say it, is that it cannot be accurately realized without the experience accomplished.
Consider focusing your energy on gathering knowledge that offers the hope of overcoming the disease and improving your quality of life one day at a time. Replace as much as possible conceptualizing and comparing the possibilities of the worst case scenario with the possibilities for the most desirable outcome.
There are programs and options such as patient advocacy, non profit funding, fund raising resources, clinical trials, CLL support organizations, not to mention a multitude of credible insight available through this forum and others like it.
Forgive me if I have chosen words that resemble the positivity tyrant that I am. I know this is not an easy road.
The purpose of showing where construction is underway on a road map is to provide the traveler the best route possible rather than to promote angst upon the traveler.
The Hope Highway usually has less detours.
Travel well Pokerguy,
JM
Hello Pokerguy -- from the looks of your handle, I'd wager you like sitting down to a good game every now and then. I’d even bet that you probably know the Texas HoldEm odds of hitting a gutshot, aka inside straight, are only 9% and that flopping a flush only happens 0.8% of the time or 124/1.
As others here have stated, your chances when doing nothing, and having a decent outcome, are grim. Me thinks, going the problem ignored is a problem solved route, means you might have more luck flopping two-pair from non-paired hole cards …… about 2%.
Here is the somewhat shorter bumper sticker version: Rolling the don't medicate, CLL bones in this day and age is in all likelihood a losing proposition.
The current crop of medications, especially the ones involving immunotherapy, not only truly work miracles, but they do so with many people experiencing no serious side efx.
You might have read that when it comes to modern CLL treatment some folks have been known to use the word cure -- and while “cure” is for the most part not accurate -- there are many instances of U-MRD after treatment. Translation: you have excellent excellent odds for a life free of CLL worries with treatment. And believe me (from someone who’s been there), when your spleen gets to be the size of a knerf football, you’ll be in so much pain you won’t be able to sit at a poker table.
hello Diagnosed in 2012 I refused chemo 3 years and 3 month ago. I m still fine but
a little bit tired, and large spleen. My last numbers counts in December have been stable during 2 years,,(194000 lymphocytes/ mm3, hémoglobine 10,7) (no lymph nodes) I don’t know how they are today, I m afraid to have an examination because of covid 19. I delay the blood examination.
I m fine it is the most important.
one other example of what happens when you don't treat--swollen nodes in inconvenient places. while others have noted that spleen and lymph glands throughout your body will swell if the CLL is not treated, i had an especially inconvenient swelled node in my throat. who knew that lymph glands are inside your mouth?
my swollen gland in my throat grew to the point that i wasn't able to swallow food. this became a problem and led directly to starting chemo. at the time my ALC, WBC and other blood counts weren't bad enough to usually justify chemo, but a group of docs--i had a second and third opinion before treatment--recommended that i start chemo vs. the alternative: throat surgery to remove the gland. Note that this occurred in 2010 way before targeted therapies, a..a. ibrutinib--were around.
one of the more famous aphorisms in CLL world is to treat the patient, not the numbers. My experience is a great example of this.
What is a non chemotherapy treatment regimen to treat CLl
Atrial Fibrillation and Bradycardia What CLL Treatment might I get 
quinine to treat cramps and cll patients.
treating cll
