Hi there
I hope everybody is doing well here. Very soon I am going to start my first cycle of FCR. The problem is that there is loss of appetite not due to fear of therapy but due to my progressive CLL.I want to know ,if any had such an experience ,when my symptoms will resolve? Will that happen after the whole course of treatment or sooner ? Just one bite is enough to make me vomit and I hope there is a solution.
Quite unusual before treatment, I hope you can get help.
Talk to you CLL doctor about nausea medication perhaps...
~chris
Thanks for your reply.
I already tried some but for sorrow didn't help.
Also, are you taking the anti nausea medication before you feel ill, or after? Taking it before is important, as it's hard to catch up, once the nausea starts.
Before then stopped when I found no improvement.
Do you suffer with anxiety or depression or have you recently been feeling down.. I only ask because with the thought of treatment looming and getting ever closer you might be feeling a bit anxious or nervous causing You to feel sick with loss of appetite.
That’s a common feeling I think many people suffer in the beginning.
Stuart
That's true..for the last month I have been depressed.But what concerns me more if loss of appetite is due to leukemia,how much would it take to improve after starting therapy.Waiting for the whole course seems too far.
I don’t think Cll would directly reduce your appetite but there are a few factors like a swollen spleen or nodes pushing up against things internally which could cause you to feel bloated preventing you from eating normal meals..
I think it’s most likely to be a bit of apprehension and nerves causing you to lose your appetite if all avenues have been discussed with your Team.
Generally once you’ve got your first cycle out of the way you’ll feel slightly more relaxed and things will get back to normal.. I think the prep talk prior to beginning treatment plus reading negative stories on the internet generally make things feel much worse than they are..
In most cases your looked after very well when your under going any treatment it’s just prior to beginning your filled with what ifs which make it seem worse.
You may get a few days during treatment which knock you out of sync and you might feel nauseous with loss of appetite but they generally subside.
Try to relax and stay positive and rather than fearing starting treatment look forward to it because it’s the beginning of getting your life back and being free of Cll for potentially a very long time or depending on your markers indefinitely.
Stuart
I've completed three cycles of FCR and I received anti-nausea meds intravenously at the time of my infusions. That helped greatly the second time, but not so much the third time. I had to request more meds which then worked.
I think the mind plays funny tricks as well. Worry, fatigue and nausea are unfortunate bedfellows and it's sometimes difficult to distinguish them.
I rely heavily on my body tells me it comes to food. Sometimes I look at fresh vegetables and it says 'Don't go there!'. The same applies to soup. It's winter here in Australia but I have little or no appetite for soup.
The important thing is to eat, even if it's unhealthy. We can't be virtuous all the time! If I feel like fish & chips, then off I go to the shop on the corner!
Hi
My appetite increased on FCR! As did my weight. Taste intact.
With CLL cell gone you could feel amazing, I did.
Now in cycle 5.
Best wishes
Hi
I am waiting for such a reply. At first I hope that you will recover very soon with a long life free from leukemia. Could you please tell me in which cycle appetite improved and started to gain weight or when generally symptoms started to resolve?
All my special thanks in advance and all thanks and respect for everybody who showed interest and supported me with words or ideas and for all CLL fighters here.
Regarding before you get treated is your symptom worse with hugh fat food or any? Do you have a large spleen? Are you constipated?
Do you have trapped wind (burp a lot)
If so you may find a peppermint tea helps calm your stomach.
Also maybe you should try drinking something high calorie. Ask to speak to a dietician perhaps for some advice.
With any food .There is mild spleenomegaly on sonar not detectable on physical examination. No constipation or trapped wind. Thanks god I can still drink probably I'm just living on fluids now with struggling to take few bites of food.
I wonder if you have an issue with swallowing as such. What happens if you eat soup for example? Has an ent looked at your throat? Nodes or lingual tonsils might be forming an obstruction
I am at a different stage because I developed lung cancer, stage 4, after nine years with CLL on W&W.
I lost my appetite when in hospital receiving treatment, and dropped below the weight I was in late teens/twenties. Fortunately, as I do not like waste and throwing out things, I still have clothes which fit!
I find I still like sweet things and can swallow liquid, so am using protein drinks like Complan and having puddings. I can chew and chew 'normal' food but can't bring myself to swallow.
However, I have now been prescribed a small dose of steroids in tablet form and this worked, so I'm asking for food now, and enjoying it. (Just a little worried whether it continues to work when I stop taking them next week.)
Hope this helps, MoSamir
Oh sorry for hearing about your lung cancer,lost appetite and loss of weight. But just try to think of your old new fitting clothes and your nice sense of humour. I hope your appetite will continue to be well after stopping steroids.My doctor advised me to take low dose steroid but it seems too low to make a difference. Thank you dear.
Are you sure? I’m only taking 2mg once a day for five days, then for five alternate
days and it’s working great. I’m also taking omeprazole to protect the stomach. Certainly worth trying.
All the best, Joan
What kind of steroid are you taking? I've been taking prednisone 10 mg per day. Steroids have multiple types just 2 mg of yours may be equivalent to a much higer dose of mine. I am also taking omeprazole to prevent gastritis. By the way my steroids were prescribed due to autoimmune thrombocytopenia that improved and platelets exceeded 100.000 but my hemoglobin continued to decrease below 9 that's why I'm going to start therapy.
It’s dexamethasone 2mg. I was originally going to take the same thing but 4mg twice a day, to help with swelling and pain... but I only took it for one day.
Your condition is so different, I guess my experience isn’t any help. I do wish you all the best for the next step, Joan
I lost a stone before treatment. My spleen was very enlarged and I was told it was like having a gastric band. I had tiny meals and struggled to eat. As for anxiety, it is normal to feel nervous. Once you start it will be easier. Take sickness meds all the time and ring hospital straight away if you want them changed. In 6 mths it will be all over and hopefully you will get remission. The treatment worked quickly and soon shrunk my spleen and I could eat again. Take a book and read whilst having the infusion. Drink milk if you like it.
Hi MoSamir,
I had a similar experience to AnneHill . CLL caused my spleen to enlarge a lot, and became like a gastric band squashing my stomach and taking away my appetite.
However, within a few days of starting treatment (I had Idelalisib), my spleen shrank dramatically and I began to get my appetite back. That was just my experience though, and there may be other reasons for your nausea.
I realise that you'll be having FCR (not Idelalisib like I had). But I've heard that the same thing usually happens with FCR. The spleen and other enlarged lymph nodes soon start to shrink, often after just the first round of treatment.
FCR itself can cause nausea though, so it's well worth taking the anti-nausea tablets that are offered, even if they didn't work for you before. As someone said already, do keep asking your doctors, as it may be a case of trial and error before you get the right combination of anti-nausea medication.
Wishing you all the best, as you start on your treatment.
Paula (in Sheffield, UK)
3rd Rituxin infusion completed.
Covid antibodies lost in short time periode 
Completed 12 months on w&w
Update 4 months after completing Venetoclax
Husband nearing completion of O+V/should there be a test for UMRD?
