I have been trying to understand why, after being in remission for nine months, I am confused and disappointed with my progress. I expected to recover what I had lost, to get back to where I was in my life before CLL went into overdrive. My blood results are normal, my CLL is not active but I am not healthy. I've been in hospital three times for pneumonia, I've had three weeks of intensive treatment for skin problems caused by (coming off) ibutinib. In three years I have lost ten. It's hard for me and my family.
Thanks to members who have posted on this topic I am sorting out how I became disheartened.
I've rarely been ill. My notion of getting better is based on childhood illnesses of mumps, measles and chicken pox. During these illnesses children are laid low; when they recover, they are up and running as if nothing had happened.
CLL is far more serious. Although I knew that it affected mainly people in their 60s and 70s, I did not think of it as an age-related illness like heart-disease, strokes, arthritis and dementia etc., in which parts of the body are coming to the end of their working life. In the case of CLL, the bone marrow mis-functions. The new medications are having success in re-establishing normal patterns, but no one is certain how long this patch will last before the CLL reasserts itself.
I managed the treatment of CLL calmly. I prepared myself by learning about what could go wrong; when there were down turns I was ready to face them. I prepared myself for remission in a similar way, for the possibility of Richter's, secondary cancers and so on, which have not developed. But I have been caught unawares by how much the treatment has taken out of me, how side-effects have slowed my recovery, how other age-related problems (prostate) are coming to the fore. My leukaemia is not active, but I have a slew of lesser problems which have stopped me from regaining my vitality and joy of life.
In retrospect I wish that my remission was not celebrated as a one dimensional success based on laboratory results. I wish someone had explained, "Look you have to be careful, your body organs have taken a battering coping with the medications. You need time to recover from this serious illness. The recovery will take place in its own time. Do what exercise you can, but be patient, don't expect too much of yourself. When you are fit enough, look at some of the secondary health issues that you have put to one side while the CLL was being treated".
I hope many of you were given such advice. I just thought I was going to get better and I would be up and running in no time. I became frustrated when my recovery did not meet my hopes and expectations. Now that I have a better understanding of CLL, I can reduce my expectations, take pressure off myself, and learn to enjoy where I am at this moment.
One thing to remember. Treatment can get rid of the CLL, but it does not always repair the damage done by the CLL before treatment. For those whose immune systems are extremely compromised, treatment might not fix that at all. If that is the case, you can continue to get more than the “normal” numbers of infections. Diligence is extremely important to ward off infections as much as possible.
I agree, that as patients, we are not really told what to expect at end of treatment time. Doctors need to do a better job of this...especially for older patients who won’t “bounce back” as quickly.
A line from your excellent and honest account jumped out at me Peter and I wonder if it’s particualry significant;
‘I've rarely been ill.’
I believe this must be so much harder for those who had CLL thrust upon them from little previous experience of illness. Sadly I couldn’t truly say I’ve enjoyed robust good health even though I’ve lived a reasonably healthy and active life. It’s been less of a shock to me and more of the same. My expectations of good health are lower which probably sounds a bit shocking. I’m a functioning pessimist! My joints were already goosed before I started Ibrutinib so the arthralgia has been less of a body shock to me (still painful as hell though!).
You are right however in saying there’s little psychological preparation for what being in remission actually means. The ‘good cancer’ (🤨) is like death by a thousand cuts. My life has shrunk into a smaller place.
If I’m lucky enough to reach a strong remission, I suspect I’ll celebrate it eagerly but advisedly with a degree of suspicion. Truth is the labs really don’t tell us everything as you’ve discovered Peter. I loved the line, ‘...not celebrated as a one dimensional success based on laboratory tests’.
I wish I had the answers for you but I suspect you fully understand your reality. You just don’t like it much!
You're right, it is significant that I have been rarely been ill.
I have been fit and healthy until I was 68 when I had a minor brain bleed. After six or eight months I had recovered my speech and the co-ordination of my legs and I was more or less back to normal - and a year later I began treatment for CLL.
So, yes, I can see how privileged I have been in my life with my health. This has made it harder for me to manage my expectations about recovery. Having said that, I could have been much better informed about after care while being in remission.
I realise how debilitating CLL is. I have also discovered that serious illness ages people quickly. This has been painful to learn. But being a little wiser will help me cope with more equanimity.
I remember reading a few straightforward accounts on this forum of people whose situations were far worse than mine. I found them harrowing. My silent question was always; How to you cope with such dignity in the face of such difficulty?
I am also pleased that other members who have replied to my posts have also acknowledged that they too have found that being in remission has been not been an easy path.
I can relate. My own life/goals/pursuits have changed dramatically as a result of prolonged debilitating illness, even though I am now nominally 'well' according to lab reports and such. Remission and recovery not the same thing. But most of us probably assume they are synonymous before going through an experience like this and realizing recovery can take a lifetime. I would say I am happy now with how I am spending my days, and what my goals are, what I am getting done. But those days and goals and 'doings' are very different from what they were pre-illness.
Thank you Peter. It's so true that specialists tend to see the resolution of the health issue that brought you to them as "goal achieved" and we assume this means "you're better now" when it doesn't. It's been a revelation to me to hear how many of us are doing well by medical criteria and still struggle with feeling well or adjusting to the losses we continue to experience.
Thanks for sharing. We all understand and want to support those members who are going through the shock of being diagnosed or of starting treatment. It is tempting with all the new advances to think that when people are in remission that they are home and dry. Recovery, however, does not seem to be so clear cut, does it?
I am new to treatment, just started Ibrutinib and always thought of myself as relatively even though I didn't run marathons healthy. The legionaires I recently had did knock me down however the antibiotics snapped me out of it. My endocrinologist just told me I was cancer free of the thyroid cancer and that treatment was in 2005. I always wondered what the radioactive capsule I took was doing to me even though I didn't notice a difference.
It takes longer as we age to overcome the toxins that hit our bodies from treatments, some could be permanent.
I don't know but I do know that talking to patients that have gone through similar treatments know more. Its just like companies are detached to the actual employees on the front line. They go by whats on paper, the front line employees know what is going on day to day. That's why this and other websites are so valuable, I have learned so much from other patients. The doctors are saving our lives we are coping and trying to pick up the pieces rebuilding our lives.
Perhaps your post will get you some answers and others will read your post helping them too now that you brought up the subject.
Hope you feel better soon, what a lovely picture you posted.
It seems to vary a lot between patients' situations and treatment types. I was treated before my CLL was too bad with Ibrutinib + Venetoclax, starting in January 2016. I feel fine and don't get sick any more than before I had CLL (actually, I feel sick less because I no longer get hay fever and my banana allergy is cured too). I have a young son and don't take any particular precautions against infection.
A friend of mine has been on BGB3111 treatment (similar to Ibrutinib) and also feels fine. He takes a few precautions to minimise infections and is on IVIG but started treatment later.
The science isn't in yet but I think there'll come a time soon when we look to treat CLL earlier, before our immune systems have suffered too much damage.
Your comments reminded me of this video of Dr. Adrian Wiestner:
"..with treatment we often target the CLL cells but we rarely really improve that immunodeficiency... and so developing strategies or investigating to what degree the new treatments modulate immune system has become a focus of our interest and the interest of other people"
I am also in remission after 6 monthly treatments of BR, however I get monthly IVIG infusions to keep my IGG levels in the normal range. When my IGG levels have been below normal, I suffered from recurring infections. Consider discussing this with your doc. Best regards.
Thanks for your reply. I have seen the initials for IVIG and IGG before on this site, but I don't know what they stand for. Could you give me a short explanation? I'm wondering this treatment is offered in the USA. I haven't heard of it in Germany, but I'll ask.
Peter, I found your post so touching that I went back and read more of them. I truly feel for you, but just so you know, it’s prepared me for what my husband may face in the years ahead and myself as I care for him. Thank you for your honesty.🙏🙏
Dear Kokobean,
Thank you.
I hope your husband's treatment, when and if it starts, goes smoothly. This forum is very helpful for finding out from others who have gone through what I am about to go through. Sharing this experience has made strange territory more familiar, less a step into the unknown.
Your husband is in good hands, but you too will need support.
Is your doctor able to give you IVIG infusions to maintain your compromised immune system?
Blessings
Farrpottery
Dear Farrpottery,
Thanks for the suggestion. As I wrote to Mrsminton I do not know anything about IVIG infusions. As far as I know they are not done routinely in Germany.....but I`ll ask. Any further information would be appreciated.
Peter, IVIG stands for Intravenous immunoglobulins and is given as the name suggests by monthly intravenous infusions in hospital (or people can be trained to administer it themselves sub cutaneously at home). It can take several hours to administer (I’ve had two sessions so far).
CLL treatment targets the CLL cells but we rarely really improve that immunodeficiency. Depleted Antibodies/immunoglobulins (same thing), are quite normal for many of us, simply because CLL interferes with the way healthy B-lymphocytes mature into plasma cells that make them. CLL cells disrupt this process by interfering with the way healthy B and T-lymphocytes work together to create hypermutated B-lymphocytes that make antibodies for a specific bug. (This is why vaccinations don't work that well for us.)
CLL treatment doesn’t repair the depleted immunoglobulins although there has been some improvement seen with immunotherapy treatments.
The immune system rests on two major pillars: the innate, general defense and the adaptive, specialized defense. Both systems work closely together and take on different tasks.
IVIG is expensive because it’s harvested from the plasma from up to thousands of blood donors. It only supplements the main IgG immunoglobulin and is given only if infections are frequent and persistent and the level is below 4 (though different systems have different criteria).
You’d need to ask your doctor how your immunoglobulins are looking to ascertain whether this is needed.
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