Why the Weight Loss?

[napa]

Hello, does anyone have information if CLL can cause dramatic weight loss? I have CLL and have lost about 14 lbs in the last six months without trying. Thank you.

[JigFettler Volunteer]

Hi Napa.

Weight loss - if unintentional - is important, and must be reported to your Haematologist.

I would suggest that 14lbs in 6 mths warrants a chat with them.

There are many other non CLL reasons - here your GP will help. Your GP will also be accessible sooner - probably than the Haematology Team. For example checking your thyroid status, sugar etc. The GP can also organise the CLL Bloods needed to help the Haematologist. Fbc, Renal, Liver, LDH and so on.

Take care!

Jig

[napa in reply to JigFettler]

Thanks, Jig, good suggestions that I will follow.

[stevesmith1964 in reply to JigFettler]

Hi,I lost the 18lb without trying through the summer, I thought nothing of it as I had retired in April to be a full time dad to my 3 yo and 1 yo....so was more active. I had a routine blood test in late October and was diagnosed with stage 4 CLL. The weight loss was directly down to massive tumour load. I started treatment 10 days after diagnosis and now 5 weeks later I have regained the lost weight.

[JigFettler Volunteer in reply to stevesmith1964]

That's impressive Stevesmith. Possibly a more unusual introduction to CLL. I too had massive tumour load in nodes and spleen. My weight never altered. But, in retrospect I had lost lean muscle with fitness loss during watch and wait. Loss of muscle balanced increase in node mass. Weight remained static. I was fooled.

On starting FCR, I had a very vigorous response. Lost 7kg in 1 week, nodes and spleen disappeared.

So... the weight issue on the CLL journey is not simple issue. Weight gain, weight loss, its all important.

Important to tell our CLL Drs.

Be vigilant, if you are asking yourself questions... its time to talk to your Docs.

Jig

[mrsjsmith]

Napa,

About three years ago l lost so much weight I was deemed to being undernourished and was sent to see a nutritionist. I would cook a meal, look at it and throw in the bin. Never found what caused it, but eventually went back to usual weight.

Just don’t buy any new ‘slim’ clothes. I now have a wardrobe full of small clothes.

Colette

[blowinginthewind]

I have "unintentionally misplaced" 62 lbs since February. Some of it is because I have been taken off a medication for diabetes which can cause water retention, and put on water tablets. I had a scan in June and that that was fine. So they put me on 3 month visits instead of 6 month visits, and they have since moved me to 8 weeks visits and suggested that I "should now maintain my weight". I haven't done anything different since then, and was weighed at GP last week when I had bloods done for diabetic check, and have lost about another half stone. But my appetite is much less since February. I have been told that I will have another scan if I continue to lose weight. The irony of this is that I was very fat to start with and I am still fat.

[BeckyLUSA]

I unintentionally lost 20 lbs the first 8 months after diagnosis. Due to increasing size of spleen pushing against stomach and making me feel full. Just could not eat as much, no appetite. Treatment took care of it, except for GI issues. Lost 10 more lbs due to diarrhea. Now that my Ibrutinib dosage has been lowered and GI issues are gone, weight has stabilized. I have gained back the last 10, but not the first 20. I can’t gain it back because I did get rid of the larger clothes!

BeckyL USA

[louie48]

Howdy napa, I lost 80# after BR four years ago. I did feel puny and had a poor appetite, but I think giving up the 6-10 beers I drank most every day had a lot to do with it! God Bless.

[Hidden]

From lukaemiacare.org.uk. Do not know the date of the post..

"Leukaemia can cause weight loss in a very direct manner, because rapidly dividing cancer cells use up large amounts of energy that your body would otherwise utilise or store as fat. Some cancer cells may even produce substances that effect the bodies metabolism, i.e. the speed and efficiency at which the body breaks down food.

Another, less direct cause of weight loss in leukaemia is loss of appetite. This can occur if a build-up of leukaemia cells in the blood can causes an enlarged spleen which can press upon the stomach, giving your brain a false sensation of fullness. This will cause you to eat less than you would normally."

PS - I lost 14 pounds in 3 months.

[Blackbelt5]

I went from 155 lbs to 134lbs , from thin to skinny, medium to small. Just a part of life courtesy of CLL. Good luck, Gary

[Pogee]

Some CLL-related targeted therapy drugs, such as ibrutinib (Imbruvica) can cause weight gain or weight loss. Whether you're on a drug or not, I've read, but can't put my finger on any specific site, that those who have weight loss are more at risk to die within a given timeframe (5 years?) than those who retain their weight. I'm sure there are some, such as AussieNeil—bless you, Good Sir!—who have vastly more information on this subject.