Starting with FCR treatment tomorrow. Can I c... - CLL Support
Starting with FCR treatment tomorrow. Can I continue to enjoy a glass of red wine in the evenings .
Get the OK from your doctor... everyone is different and your liver and kidney functions need to be assessed which they will be prior to treatment.
~chris
Haileybury, first of all wishing you the very best for the start of your treatment and hope all goes well.
I agree with Chris that this is a question for your specialist. Could be you really won't fancy alcohol but there may be times it's the relaxant you need (in very small amounts obviously). Your liver and kidneys will be having a tough job to do anyway and you don't want to give it a double whammy.
I'm sure others who have been through FCR will be able to advise from a more experiential point of view but just wanted to wish you well. I'd certainly miss the odd tipple too!
Newdawn
Thanks, Chris. Safety first and plenty of water is probably best for now. Am I likely to lose my taste for food and drinks ?
I had FR and RCHOP, which is like doing the FCR the very hard way, and I experienced no loss of appetite. You might feel some mild nausea, and it is important to stay ahead of nausea with medications...
I experienced some mild diarrhea with FR fludarabine & rituxan, and extreme constipation with RCHOP.
Please read all the handouts about the protocol you are give, and note the after hours contact numbers. If you feel strange, call for guidance, that is what the after hours people are there for.
You will do just fine... the anticipation is far worse than the actual treatment... seriously...
Hi Hailbury
Good luck for tomorrow ... I look forward to when we both can have a wee toast when you complete your treatment ... I'll have a nice wee dram of 16 year old Lagavulin single malt whisky and you can have your red wine.
Steve
Hi, Steve
Are you on FCR and when did you start ?
No treatment as yet .... just wishing you well
Thanks, Newdawn.
IF you are in the U.S....FCR is given all by IV. Outside the U.S. the fludarabine and cyclophosphamide are often oral pills/tablets...
The fludarabine are very very small and easy to loose... I spent half an hour crawling around on the floor looking for a few I dropped... so, open the packages carefully...
I learned to open them in a big mixing bowl... that way they were better contained...
~chris
Hi Haileybury,
I can't really answer your question about the wine, but I did want to wish you good luck as you start FCR tomorrow. Sending good thoughts your way. Keep us posted on how you are doing.
NVP
good morning and all the best for your FCR treatment. I had my FCR nearly 4 years ago and some days i just had water and Tizer pop but other days i went to the pub as usual and enjoyed a couple of Guiness and sometimes a wine in evening.
Just take it as it comes and your body will certainly guide you. Now i usually visit the pub daily and have just been put on 6 month blood checks for my progress
once again good luck and Cheers.
defconSkipton
Good luck with the treatment. I have been given Ciprofloxacin to swallow along with everything else. There seems to be divergence of opinions on whether you can drink alcohol with this antibiotic. Ranging from: "Because of the pathways that it disrupts and the possible side effects, combining ciprofloxacin and alcohol is strongly discouraged." (safetymedical.net/cipro-and... to "there are no known interactions between alcohol and Ciprofloxacin" (nhs.uk/medicine-guides/page...
Are you aware of the risk of tendon damage with ciprofloxacin? I've been prescribed it for concurrent use with an IV antibiotic and said I'll try without initially. Check Sparkler's posts on fluoroquinolones and:
en.wikipedia.org/wiki/Cipro...
You may be fine with it, but perhaps your doctor is not aware of this risk; mine wasn't.
We are running out of options for some bacterial infections and sometimes have to accept a risk that is the better alternative to succumbing to something far worse...
Neil
Thanks Neil. I'll ask next time I am in the hospital ... I've just got through week 1, so now have 3 weeks off FC and anti nausea tablets, but still have to swallow Cipro on what seems to be a bizarre schedule of twice a day three days a week. In the immortal words of Led Zeppelin "I'm dazed and confused" (though Plant did not sing to much about and periodically exhausted and nauseous too)!
If there is an alternative to a Fluoroquinolone antibiotic, I would urge you to switch and ditch the Cipro. If you absolutely have to take an FQ and you have no choice, then I wish you luck with it.
Please read about the adverse reactions; they are many and varied and can be permanent and also delayed.
May 9th is World Fluoroquinolone Toxicity Awareness Day and many people are marching to Washington DC, for a Rally and to deliver a petition and information to Michelle Obama. They will also be meeting with senators to discuss the safety issues surrounding this group of antibiotics.
The warnings are on the drug information leaflets and the adverse reactions are far more common than many realise.
sparkler x
Does anyone have recommendations on alternatives to Cipro then? It appears to be NHS standard protocol. It makes MUCH more sense to me to start with a more gentle antibiotic and go to Cipro in last resort if/when I get sick.
Hi MeTooAsWell
I would suggest that you discuss this with your CLL Specialist. For obvious reasons, Fluoroquinolones are used more widely in Haematology and other cancer treatments.
It sounds like you are on a prophylactic dose, just in case.....? Perhaps there is another broad-spectrum antibiotic which is neither a Fluoroquinolone or Quinolone.....
They were designed as sledgehammers for infections which had not responded to anything else, or for global pandemics; there is a place for them.
In the UK, there is a drug safety directive, which states that they should never be used as a first line defence and only then, if the infection has been determined through cultures etc. Unfortunately, they are too often being handed out like sweeties for simple infections which would probably respond to gentler antibiotics.
I can only urge you to read up on them and understand that they don't discriminate where/when the adverse reactions occur.
There are certain extra risk factors involved eg, not to take if over 60yrs, with steroids, with NSAIDs, if you suffer from musculoskeletal problems etc.
However, many young and otherwise fit people have been badly affected.
You should be informed and warned of the risks by the medics; then make your own decision, in discussion with your specialist.
I can't advise you, only warn and urge to arm yourself with some knowledge.
sparkler x
Neil
Tendon damage/rupture is only one of the risks you take with an FQ. There are many, many other adverse reactions, including Central Nervous System effects. DNA/ Mitochondria is affected.....
sparkler x
Thanks everyone who has replied. You are all very encouraging. I have decided to be cautious for at least the 5 days I am on the FCR drugs and stick to water and soft drinks.
David - 3 hours after taking day 1 drugs !
Hi,
Wishing you all the best with treatment, hope it goes well.
I did 5 rounds of FCR last summer, and my consultant said that an odd glass of wine wouldn't do me any harm, only thing was it tasted awful! So I waited until I'd finished - I didn't want to put myself off wine for good. Good news is, that I still enjoy my glass of red. The only thing I'm waiting to be told I can eat again now is salad - I know salad isn't really all that exciting but when I've not been able to have it for a year, I think you want what you can't have!
Good luck,
Louise
Hello David, I hope the first dose is going OK. I started my first lot of FCR last month and found that during the week of taking the tablets my smell and taste changed. I read that it is best to avoid eating the things you normally really enjoy whilst taste has changed or whilst feeling nauseous as it could put you off forever. I didn't fancy drinking any alcohol for about one week following the tablets. I also went off tea and had to change to coffee as it was a stronger flavour and tasted better at the time.
I guess the advice is to just listen to what your body fancies but remember to drink LOTS of water to flush the chemo drugs out with the toxins!
All the best.
I am still watching and waiting, but wanted to join the others in wishing you well.
Good luck David
Bub
Hi Haileybury,
Why push it? Hydrate only with water and frequently. When I had FR I was given steroid to function in a number of ways but one way was to stimulate appetite. Your body is going to be stressed and until your system is cleaned out of the debris from lysed cells I would urge you to forego alcohol. Alcohol is a poison after all, and a very enticing poison to say the least but prudence is the better part of valor in this situation.
Save that drink to celebrate when you achieve your remission!
WWW
Day 2 chemo. So far so good. Drank my 2 and a half litres yesterday which made me visit the toilet very frequently. Lost count of how many times ! Disturbed night too with 5 bathroom visits. Forgotten about the red wine now. Best to leave it off. Lucky me - I'm retired, live in a comfortable home and my wife is a retired practice nurse. David.
Haileybury
As I butted in to your conversation, I hope you can forgive me and the least I can do, is to wish you well for your treatment - even without the wine (something to look forward to)!
sparkler x
Finished my first course of FC (R left off until 2nd course) last Saturday. No worrying side effects. Constipation whilst on the pills. Consultant said it was the anti nausea pills and will give me something different next time. Great results on yesterday's blood test. Nasty white cells reduced by 50% - swollen spleen much reduced - and I'm not too anaemic yet. Progress ! David
Sounding good David, hope all continues to progress as well and you can celebrate with a few glasses of vino!
Best Wishes,
Newdawn
My Dad has just started FCR treatment and he has been allowed 1 glass of red wine a night. Hope that helps.
I don't want to start treatment ever, however I know that I probably will at some point.
Feeling a bit down. Slipped disc and just been told that I should start treatment soon.
