Hi All, On W&W for CLL for four years. Last CLL Monitoring Bloods and Physical ok 4 weeks ago.
I had bad reactions to 4th and 5th vaccine, high pulse rate, severe headaches, and egg size lymph nodes under left arm. Also another bad reaction after a little op to remove 2 Basil Cells from my head, recently. It became infected, and is now healing open, after Anti Biotics.
I had three bad night sweats, a few days after the op, three weeks on and i am almost back to normal. However the fatigue is bad, and I am finding it difficult to get back up to my normal weight.
I have not felt well for months, and have almost stopped my regular fitness program. My excellent GP and Haemo man are aware of all of this, but do not seem overly concerned.
All this has been exacerbated by my brother telling me I have lost too much weight, and look like a corpse (He wasn't joking) and is a straight shooter, which I do like. I had to laugh! Someone reassure me please (Am laughing again) but I would be interested to know if anyone has had similar experiences. Stay safe and well all. Ron
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If you are fighting off an infection, IMO it's helpful to not "push" so much with whatever your usual exercise routine is. I personally eased off when ill, even before this diagnosis. I was very athletic, weight trained, hiked (like, carrying our water and camping gear into high altitude mountains), biked, skiied, rollerbladed, danced, etc. And I space what I do out, say, if I have to shovel snow I do it in 15-30 minute increments during the storm, once I break a hard sweat I go inside. Annoying, but better than exhausting oneself. You probably need some extra rest and extra nutrition to fight off the infection, as well as make new skin and other tissue. The fact that the wound is still open points to this, I think. I personally go about 20% more protein and take extra MVI supplements (excepting the fat soluble ones). Make sure hydration is "more" rather than "less". Is your spleen enlarged, contributing to an inability to eat full meals? When mine was 24cm, I "grazed" all day because I could 't eat a full meal. But after I lost mmm 15? lbs over a few months and the spleen went up to that 24cm, I called a halt on the trial I was on. I started a different treatment.
FWIW, my bloodwork was "normal" except for lymphocytes when I had my first treatment. I felt awful. If you are losing weight into the "danger zone" you have to modify *something*, and with everything else being normal, it seems to me the fastest way to ascertain if it's a cancer issue or exhaustion, is to modify your exercise routine. Those of us who are seasoned athletes *can* push ourselves to do our routines, but sometimes we shouldn't. I'll also mention a neighbor of mine with CLL eased off his weight training and extreme camping when feeling "off" and it helped him. And he no longer goes and shovels snow for 4 hours after a big storm because it puts him in bed the next day. He's in his 80's and just shouldn't do it anymore. He can make himself do it, but suffers if he does.
May I ask what vaccines you took, where you have the reactions? I am interested to see if it's mostly the Moderna folk reporting them or not. Also, do you have more of an SLL presentation? Your bloodwork will most likely be better than those with a high blood/bone marrow infiltration, but if nodes affecting internal organs (including the GI tract) are changing your ability to absorb nutrients and maintain weight, you may want to look at treatment. Unexplained weight loss (i.e. you aren't deliberately ingesting less for whatever reason) is a reason for treatment.
But I wonder if you simply cut back on the exercise a bit temporarily (unless you are already at a low level) and eat more, you will heal the wound and feel better. IDK how much you jog, but perhaps just some stretching and mild yoga for the near future will serve you better. Then you can resume your old routine if you are up to it. CLL or not, we do lose some of our ability to absorb nutrients as we age, and unless you have another medical condition contraindicating extra protein and nutrition of various types, try it out.
Thanks so much for that very informative and helpful piece of info. I am not into the 'Technical Issues' so much but I got the gist.
My excercise regimes is 30 minutes Hing Twinging' stretch and repetions all working parts, whislt lying down. Followed by a 20 minute moderate jog/dance in place, for Aerobic Fix. (A modest routine)
I am absolutely amazed at the routine yourself and others are engaged in, you are obviously serious 'Athletes'. I sometimes think I would like to increase my activities, but when I get near to trying something new, I get a new health hic up. But I will persevere.
Putting on weight is easy but almost always unhealthy. Being too skinny is not good but still better than being too obese. At least that's what I think. Therefore the goal should be to reach and maintain one's optimum body weight. I only know about one way how to achieve that, and that is for an otherwise healthy person not having any acute medical condition. A change of dietary habits. A diet consisting of all kinds of meats (preferably fatty ones), eggs, organ meats, fish and a variety of vegetables. All of these coupled with fasting periods in between meals. Meaning to say we only eat when we are physically hungry and once we ate we don't eat again until we become physically hungry again. But then there are no limits! As much as we can fit in 😁. Eat like a predator, not like prey. No grazing all day. Imagine the lion who does a hunt, stuffs the stomach, lays down under a tree to slumber and doesn't get up till he's hungry again 😁. Some life it has!
Thanks Jammin Me, I probably tried to exercise when I wasn't really ready to. Am now resting, and attempting to get my appetite back. I can't seem to get back up to my preferred weight.
I have a long ongoing Urinary problem which prevents me sleeping more than an hour or so at a time. This is presently being investigated.
You mention a PT referral, can you explain to me w, and I will consider it.
'Sepsis is always a scary concern, and I will do my very beat to avoid it.
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