CLL Support Association
10,233 members15,909 posts

Sudden extreme change for the better. Anyone else experience this?

Hi all: I was diagnosed with SLL about 8 months ago (trisomy 12). The fatigue has been getting progressively worse, to the point last week where my oncologist really wants me to consider chemo. My blood counts aren't too bad, but my lymph nodes are huge everywhere. And the fatigue is overwhelming. Anyhow, by last Thursday I was beginning to agree, thinking chemo would be better than how bad i felt. But suddenly and without any explanation, I woke up Monday morning and felt completely "normal" again. Like my old self!

Today is the third day and I still feel great! I can't begin to describe what a drastic change this is. I think I can actually exercise, or paint the laundry room, or clean out some closets. All those things I want to do but can't anymore. But I'm also terrified this feeling will go away as fast as it got here. I have no idea what caused this. I haven't done anything different that would make any change.

My questions for you: Has anyone ever experienced this before? If so, how long will this last? I know every patient is different, but I'm really hoping others have experienced this and it's long term.

23 Replies
oldestnewest

Have they put you on steroids? That can make a massive short term difference. What’s happening to your nodes are they the same? Did you do some exercise or something...some people say counter intuitively exercise helps the fatigue. Any change in diet? Antibiotics? Any sudden psychological reason to feel better eg seen an old friend or something else? Any change in sleep quality?

3 likes
Reply

No, no change to anything! I'm not on any meds or sterioids. My nodes have actually increased in size from three months ago.

No diet changes. And i haven't worked out for a year now. I sleep pretty good every night, other than an occasional hot flash. I'm trying to figure it out so I can keep feeling like this.

Any other ideas?

Reply

Hello! I am actually in the middle of this type of upswing right now and i haven't had one before so I am not sure it will last. Literally about 2 weeks ago it was the same thing, I woke up feeling great, no lethargy, able to get through the day and not want to cry by 5 pm. I have also been mostly pain free (i get shooting pains, typically several times a day in various parts of my body) for the past two weeks as well. I am not on any meds, no diet changes other than i decided to allow my self some low carb beer or white wine a few nights a week. Not sure if the stress relief of some alcohol is behind it (had quit all alcohol when diagnosed in May 2017 and changed to a keto diet)?? Whatever it is, i am just going to enjoy it as long as it lasts!! Next appointment is in March so I am really curious to see what my blood work says as it has been steadily getting worse over the past year (still on W&W but doctor had been beginning to talk about the fact that i may need treatment soon). Here is to hoping we both have a long run of feeling good!!

7 likes
Reply

Good to hear others get to enjoy the same thing!

Reply

amberhead, how are you feeling? still good? i'm still feeling completely normal and loving it every day! hope the same for you!

Reply

I had about 2 days of "uh-oh" this joy ride may be over but it was a false alarm, still doing well! Dr apt tomorrow so anxious to see what Blood Work says!

Reply

I had a day like that too, but I think I just overdid it the day before and was up very late that same night. If you don't mind, let me know how your bloodwork looks. I'd be very interested in seeing if it's different right now. Good luck at the doc!

Reply

Hi there! BW improved :) I HAD been averaging an increase in WBC AND lymphocytes of about 5k per month. It has been four months since I went in and my WBC actually went DOWN a total of 4,400 in the past four months and my lymphocytes went down 4,900. While in 4 months they went down only about as much as they had been increasing every month i will take it... this is the first time in a year i have had either of these numbers go down! PLUS the fact that i have been feeling better! I am keeping my fingers crossed this keeps up at least through my vacation! Hope your feel good streak keeps going too!

1 like
Reply

That's great news amber! I hope this continues for both of us for a long time!

Reply

That has happened to me, too, over the course of my disease. I’m also trisomy 12. Enjoy it!

5 likes
Reply

How long does it last? Has it happened more than once?

Reply

It’s happened a few times over the last few years and varied as to length of time. Sometimes lasts for a week, several weeks or a couple of months. For example, I was ice wall climbing in Iceland in early July and felt great then super tired at the end of August. I haven’t had that sense of energy since September, but I think it’s because my hemaglobin and neutrophils are low. I wouldn’t analyze it too much, rarely does this disease make sense, lol.

3 likes
Reply

Thanks fell! I wasn't expecting this energy at all. I just thought of this question: when the energy disappears again, does it happen slowly or as fast as it showed up?

Reply

I think just as fast as it came. I was pretty shocked that all of a sudden I felt so badly at the end of August. Don’t get me wrong, I had painful lymph nodes under my arms in July but my energy level was high. My lymph nodes are smaller now but I don’t have a lot of energy. I don’t know if there is a correlation.

1 like
Reply

Good to know. Thank you!!

Reply

Now you guys are worrying me! So I was terrible with fatigue ever since my pneumonia and diagnosis almost ten months ago despite being early stage. As my tonsils grew my sleep got bad. And my fatigue got worse. Eventually I didn’t sleep at all due to the the tonsils meeting in the middle and I had them out as an emergency. After the operation I quickly felt SO MUCH BETTER. I attributed that to being able to sleep and breath so much better, and found that graded physio was massively helping me too. Then my lingual tonsils started to grow and interfere with my sleep again though not as badly. And I lost a lot of my progress. Right now I’m lying awake at 5:30 am and am about to go shower and go to the hospital for my second operation. I’ve been so hopeful that this will also lead to a great improvement in my fatigue like last time. But what if it’s all just the fluctuation you speak of and my improvement was just a fluke!?!

Actually ladies, I do wonder, what about sleep? I’ve noticed that if I don’t sleep well my fatigue is so much worse the next day and maybe for a few days. Also if I do little or no exercise it gets progressively worse but if I’m able to do a bit of exercise it’s better, but if I over do it then I’m wiped out.

This strange illness we have....

4 likes
Reply

It is a strange, random and very personal disease. I would take my experience and experience of others with a grain of salt simply because there are just too many factors that could be giving us energy and fatigue (mentally and physiologically)

2 likes
Reply

I am glad that you feel better. How this happened all of a sudden?!! Like a magic.

I think you could be felt unwell because of your emotional reaction following the diagnosis (It take time till we accept the unexected diagnosis, for me it has been 2 years and am still in denial). I experienced feeling very tired with neusea for nearly 3 months after I was diagnosed, and every time I am about to see my Specialist and repeat the blood test I also get anxious which convert to physical sysmptoms and it last for couple of weeks or more, then suddenly I am back to normal feeling energetic till the time when my next appointment is approaching again, my physical and emotional are up and down, depends on level of anxiety. I mean when I think about the potential symptoms I feel them happening. My GP advised me not to read about how this disease progress, just take things day by day.

Ezabella

2 likes
Reply

Claire2017- I am relatively new to this- diagnosed in May 2017- but have learned a tremendous amount from reading, research and simply viewing the comments and experience of other patients. One thing is true about CLL: every single person is DIFFERENT!! There are people with "challenging" markers who are doing fine, others with less positive markers who are having issues. If you're not sure about what the "markers" mean, check some of the postings or ask your doctor. I had nodes that were getting larger and finally my doctor put me on Ibrutinib; Within a week, they essentially disappeared (I could not feel them at all, although my CLL doctor said he could feel them probing for a few seconds under my armpits.). I think the Ibrutinib has brought my nodes back to completely normal and I feel fine. I never felt any fatigue, sluggishness or pain, so perhaps I'm unlike many other CLL patients. At any rate, check your blood work- and ask your doctor about specific items which may be affecting the way you feel on a weekly basis (hemoglobin, etc.). I say thank the good Lord for feeling great!! Wishing you the best! -G

1 like
Reply

For a very small amount CLL can totally go away but not very likely,

Hoffy

2 likes
Reply

I am also Tri 12 and had problems with fatigue each time my CLL progressed.

I did have secondary infections that when treated, my fatigue decreased significantly. I have persistent HHV-6 that goes up and down on its own. It could be anyone of the HHV viruses like CMV, EBV, etc. i.e.: the entire list of HHV 1 to 8. HHV-4 is EBV also known as mononucleosis, notorious for fatigue.

The Leukemia & Lymphoma Society lls.org/ has published an excellent audio cast on fatigue, that has a different perspective than many of the Patient Power and ONCLive videos on CLL & Fatigue and many suggestions of what we can do to improve our fatigue without pharmaceuticals:

(LLS is a USA based organization but the program has useful ideas for anyone with CLL worldwide).

thebloodline.org/TBL/cancer...

Our Newest Episodes on The Bloodline with LLS

Cancer-Related Fatigue: Syndrome Not Symptom

Cancer-related fatigue (CRF) is very different from daily fatigue. Listen in as Alicia and Lizette speak with retired medical social worker and oncology social work leader, Patrice Al-Shatti, MSW, LMSW. Patrice developed the first patient education materials, assessments, and programming on the topic of Cancer-Related Fatigue Syndrome for Mayo Clinic. She explains the difference between fatigue and cancer-related fatigue, the varying physiological and biological factors, and helpful strategies known to improve quality of life.

If you want to see ONCLive videos

onclive.com/search?keywordT...

Patient Power videos on CLL & Fatigue

google.com/search?newwindow...

Len

1 like
Reply

Thank you so much! I'll take a look at these. It's funny you mentioned mono; I had a severe case last year and was hospitalized for a couple of days. That's the same time they confirmed my SLL, which they were already testing for. It took about 4 months for the mono to clear.

I look forward to seeing the videos.

Reply

I have a few ideas. I wonder if you had a prolonged infection that might have improved? Also sometimes a change of weather or seasons seems to reenergize me somewhat. Last grasp....as crazy as this sounds....I have always had cats in our house and when my cat passed onto the big meow in the sky recently,I noticed that my nasal allergies really improved somewhat and I had a lot more energy.

Reply

You may also like...