Hi everyone who had FCR chemo

[Ankakoza]

I am to have it for the first time, is it likely to have side effects when I will get back home after the drip ? I live alone, how did You feel ?

[GMa27]

I did fine! I slept during most of the 3 day IV chemo. They give you Benedryl IV and I got so relaxed. Nice warm blanket and pillow in a comfy recliner. Went home and just relaxed and watched TV. First full day after treatment over I got a little more tired for a day or so. Little appetite. And one time I felt off so I took my zofran and was fine. It can be accumulative so probably by the third round, you will be a bit more tired. I was in remission by the 3rd so I got to stop. I was able to do most things in between treatments. I washed my hands often and went at odd hours to shop when less people around. Didn't touch doorknobs. Brought a light jacket for that. My port was great. Good luck! 💕

[rafew]

The first day can be a long day. I recall the rituxan taking about 8 hours for the infusion. I slept a lot during treatment, the Benedryl pretreatment tended to make me sleepy, But no issues after, Just tired - so be good to yourself, take it easy - drink a lot of water. Best wishes on your treatment.

[thb4747]

Hi,

I had FCR 11 times and R by itself a further 7 times over the years. I live 75 kms from the hospital and my partner was in Canada the first time, so I spent the night after each chemo treatment with friends near the hospital and was able to eat a hearty dinner with a glass of wine. The only lasting side effects have been low platelets and neutropenia (and I have hated the taste of coffee ever since!). I only drink tea now. Not a bad outcome really!

[Fiona2014 in reply to thb4747]

Interesting comment regarding coffee. I've undertaken 1st cycle- " thought of coffee- disgusting". To note, I've been an avid coffee consumer for decades. In terms of other side effects....nausea was not controlled after 3rd day (first cycle); new plan in place, as cycle 2 starts next week. Thanks for support (FCR treatment), as FCR seems to be the "bad boy of treatment options". This writer notes that choices for other treatment options can be limited ( due to personal financial situation, funding availability and policies)

[zaax in reply to thb4747]

Werd, I didn't like caffeine (Coffee) when my neutrophils were low either.

[jijic in reply to thb4747]

You HATE COFFEE now? Oh my, the idea of that breaks my heart.

[Hidden]

I live alone and went through FCR 3 years ago.

I did throughout the period of treatment speak regularly to my brother on the phone but I wanted no fuss. He was more worried than me.

Taking your temperature is important. Putting the chemotherapy unit contact number by the phone is important. Doing what you’ve been told is important.

Working out the best time for you to take the many pills with some constipation pills handy for the first day without movement!

Water, water, water.

Aim to live life as normal but the first 2 weeks are draining, so rest when you need. When I was going out for evening I would lie down for an hour before to rest.

At pubs and restaurant I ordered small meals explaining that I was having hospital treatment. Only those 2 words they were told. No alcohol except at the end of the cycle, I gave up totally.

Stay away from ill people and tell friends to tell you if they might be ill so that you can stay away. Usually no problems with them.

Eat healthy but don’t worry if the appetite goes when on the chemo pills as it will come back.

Nausea is not to be tolerated, report any to the chemo nurses and anti sickness pills can be adjusted.

Hair will thin starting cycle 2 but none will notice.

You can survive quite well alone but do as you are told, listen to your body and don’t try to push it.

Everyone is different but I wish you a successful time.

[tsvieps]

For most people FCR knocks back CLL for a few years. But the newer more target drugs are both more effective long term and less toxic. Their downside is that they are more expensive. Some govt sponsored systems still push FCR on younger robust people who can tolerate it better. I call this financial triage. There is a mutation for which often people can be put on watch and wait for many years. Such people also can go into a much longer remission with FCR than most people. For these people the cheaper FCR perhaps makes sense. But this remains debatable.

[MsLockYourPosts Passed Volunteer in reply to tsvieps]

Tsvieps - in many countries FCR is the only choice for first line treatment. Some from the original trials are still in remission and doctors are even suggesting that they may be cured.

[jijic in reply to tsvieps]

Another good reason for FCR in mutated, younger patients is that we have no idea what the long-term side effects of Ibrutinib are yet.

[JigFettler Volunteer]

Be reassured. For about 25% it's a breeze. As it was for me. Stats say 1 in 5 do stop before 6 cycles due to side effects. There are potentially serious side effects, you should have signed a consent form for this treatment.

As already said infection protection strategies vital. Keep an eye on fever, over 38 go to hospital asap.

I was mountain biking halfway during cycle 4. Now 8 months on feel 100%.

I did put on weight, eating fads to be coped with, eating helped the 5day post chemo nausea more than the antiemetics. I kept my taste, hair, energy, fitness needed a lot of work though. Mostly cos I got unfit on WnW.

All best wishes.

Jig

[noeagaman in reply to JigFettler]

I had some of those serious side effects. It rurns out that I was allergic to one of the FCR drugs. Luckily my doctor said that he had never seen this before and that it is rare. My counts when down so far that they put me in the hospital for a week and gave me constant blood and platelet transfusions. Then when I got out of the hospital I had to go there for a month every other day for more transfusions and injections. I'm not saying this to scare anyone, I just awant to make sure that people are aware that this is a possibility. My wife said that my skin turned grey and I could hardly walk so she took me to see my doctor and he had me admitted right away. It's normal to get weak for a few days after each treatment cycle, but if you get so weak that you can't stand and that last's for a while then get to your doctor. My doctor told my wife that I almost didn't make it. It was a very scary time. Hopefully you will do OK though like most people.

Chris

[JigFettler Volunteer in reply to noeagaman]

Your experience has been severe and frightening. I knew those risks too, I was very treatment phobic. I also knew I had to be treated. I spent the 1st week in hospital. I reacted to the infusion of Retux. But not any way near as bad as you.

On the 7th day of cycle 1 I woke up and felt the CLL had gone. Thereafter I tolerated FCR well.

How does one counsel patients with experiences as diverse as ours?

I truly hope you are in a better place now.

Jig

[noeagaman in reply to JigFettler]

Yes, it is amazing how we all respond so differently to treatments. I am doing much better now allthough my counts are still low a year and a half after FCR. Not nearly as low as they were back then though so I feel good. My doctor says that I am in remission just with an incomplete recovery. I guess that's better that no remission.

I hope that you are doing well too Jig.

Chris

[Ankakoza]

Thank You all! In my country FCR is most modern one mamy get, newer are not refunded. I am 65 and feel Perfectly well, If not results on paper I would never say that anything is wrong, the only symptom is 115 WBC.

My Doctor is so busy with amount of patients, that she she didn't say anything what to do and what not to do, even that one should drink a lot of water. I will be gratefull for any tips how to clean your body after treatment. I am also on LDN for 3 years and progress was very slow, suddenly went faster in last 6 months, LDN officially doesn't exist here, no idea should I stop it during the treatment

[AussieNeil Partner Administrator in reply to Ankakoza]

Hi Ankakoza,

I'd appreciate clarification of some of what you've shared and in particular why your specialist said you should start treatment now. By LDN, I presume you mean Low Dose Naltrexone? Why were you taking that? When you said "..progress was very slow, suddenly went faster in last 6 months.", do you mean by progress, how fast your lymphocyte count was climbing? (A doubling lymphocyte count in under 6 months is one trigger for starting treatment, but CLL specialists look for additional evidence to start treatment if you feel well. They just monitor you more closely from what I've observed.

Also your WBC of 115 means your lymphocyte count has just passed the 100 mark, which is used as a trigger for starting treatment for other lymphomas, NOT CLL!

healthunlocked.com/cllsuppo...

This post covers the triggers for starting treatment:

healthunlocked.com/cllsuppo...

Given you say that you feel perfectly well and your only symptom is your 135 WBC, I would recommend you gain a clear understanding of what other factors are behind your specialist starting you on treatment. Seek a second opinion if necessary. If your specialist doesn't see many CLL patients, her busy schedule may mean that she hasn't found the time to keep up with the fast changing world of CLL treatments. You may be able to defer treatment for years longer. We have many members with much higher WBC counts than you who remain in watch and wait.

Neil

[Ankakoza in reply to AussieNeil]

WBC didn't double in 6 month. I Heard many opinions that it is early to start chemo, mainly from people living in other countries, but here doctors insist that If I'd reach 150 chemo mamy badly affect my I kidneys, I did have 3 opinions. That is true no other syptomps, few lymph nods in arm pitt bigest 33x17 mm but one cannot see it. All other blood results perfect. Inside spleen and l.nods also perfect. In Poland You can forget about ibrutinib and modern immunotherapy li ke Car-T, FCR is called modern, do I really have a choice ?

[AussieNeil Partner Administrator in reply to Ankakoza]

If you have an existing kidney condition, that may be influencing your specialist's recommendations. I'm glad that you have sought three opinions.

Generally, healthy kidneys and your heart and other organs are protected from the impact of rapid killing off of large quantities of CLL cells by prescribing Allopurinol, which is also used in the management of gout.

I've seen excellent CLL research from Poland and you'll note that your country has representation on the iWCLL Guidelines document if I recall correctly.

You are not alone in not having access to the newer drugs. That's the case in most countries.

Provided age is not an issue, delaying treatment does give you time for newer drugs to be approved, or clinical trial access possibilities, though I accept that's probably not all that likely in Poland. I appreciate your difficult circumstances.

Neil

[Ankakoza in reply to AussieNeil]

Reasearch is one thing, availability another, by the way my kidneys are in perfect condition, newer drugs are only for those with mutation or delection, for ex. monthly cost of ibrytynib is 6 time what I earn monthly.

So many of You survived- i will to!

[AussieNeil Partner Administrator in reply to Ankakoza]

Your situation is typical for most of us outside of the USA

[Ankakoza in reply to AussieNeil]

Regarding Low Dose Naltrexon it is reccomended as cotreatment , I read a lot, know someone given this in Germany, my GP also red and said why not, might help. Ever sińce in blood tests were marks" numerous Cells shadows" what pleased my hematologist

[AussieNeil Partner Administrator in reply to Ankakoza]

Your country's participant in the iWCLL Guidelines document is Dr Tadeusz Robak, Department of Hematology, Medical University of Lodz, Lodz, Poland.

LDN has been previously discussed here: healthunlocked.com/cllsuppo...

Neil

[AdrianUK in reply to Ankakoza]

You might want to see if you can get to see Dr Robak before starting chemo for a second opinion. He might say wait for longer. He might even have the option for a clinical trial or some kind of compassionate use program particularly if you have certain markers. I do think it’s often a good idea to check with another expert ideally one of the top ones before starting treatment wherever you live. I echo everyone about saying it can go quite smoothly but it can also be difficult with nausea, fatigue and risk of infection / temperature really important. And important to be able to get to hospital quickly if you start to feel unwell or get a temperature.

My own FCR diary can be found by clicking my name altogether it should be said that many have a much more straightforward time than me.

[Mandy56 in reply to Ankakoza]

Hi Ankakoza, drink at least 2 litres of water a day during treatment and for a few days after treatment. It helps flush the poisons out.

Also, be prepared that rituximab can give you terrible constipation. Ask your doctor to prescribe stool softening powders and take them from the day before you start. Flush the loo, lid down, x2 after you use it. Be aware that the toxins can be passed on to anyone else through bodily fluids, so don’t share towels, toothbrushes etc with any visitors.

Be kind to yourself and don’t push your body too hard. Hopefully you will be fine, but remember this is a poison and you should be gentle with yourself.

Mandy x

[AntonioC]

I had 6 cycles. The first day was very very long. I felt mostly sleepy and nauseous. I slept for 20 hours a day. After the first week I was back on my feet completely in terms of strength, but that fooled me once as I started doing too much and got an infection.

Tips that worked for me:

Prepare plenty of clothes changes

Fresh bed sheets

Water, pills, thermometer next to bed

Have a plan to go to the ER in case of fever

Good luck and keep us informed

[Elliot43]

I had Fcr in 2013 I was 69 then. Had a good remission 6 yrs but it may be coming to an end.. feeling sore glands in usual places!!

I did suffer side effects, nausea particularly, it took a while to find the right anti nausea med to help me. . and I had a week in hospital with neutropenia.. also chronic neuropathy since.

This is just my experience. You may do really well.

So yes drink 2 litres of water every day. Stay clear of anyone with an infection. Wash hands frequently. Take antiemetics regularly.

Don’t wait to feel sick, as it can take hold. Also excercise as much as you can too.

Best wishes Anka.

Sheila in oz

[Peacekeeper]

I had two rounds of FCR 2003 and 2007 the latter lasted 8 years. I would suggest to not have more even two my new Doctor says messes up your bone marrow so mine still shows some issues after 6 mths on venetoclax and 16 years down the track.

the 1st day with R is long they go really slow and double the infusion rate every 30 minutes, I had phenergan for the itching and sleep most of the time. The remaining 2 days were ok and I stayed off work for 2 weeks to avoid sick workmates.

They say watch contact with family members as the stuff is toxic as the nurses will be fully gloved up to prevent exposure. All the above recommendations great nausea will come take the tablets given and any worry call. Funny the FCR increased my sensitivity to eggs and bananas such that I cannot eat them without bad pain 16 years on.

[Sepsur in reply to Peacekeeper]

Pain in your gut from bananas?

[Peacekeeper in reply to Sepsur]

Yes but egg yoke 4 times worse. I had a slight intolerance before FCR but it made it worse. Probably only me not a side effect normally as far as I see.

[234me in reply to Peacekeeper]

After my treatment, I also cannot eat eggs cooked in any way. very painful gut ache for hrs afterwards. Even eggs in some products effect me now. So I don't eat eggs at all. Price to pay for being alive.

[Peacekeeper in reply to 234me]

Thanks...Now I feel more normal thought it was just me. My limit is 1/4 an egg so have to watch cakes and skip omelettes.

[sue2412]

Good luck with your treatment. Thanks posting this as I’m due to start FCR in the next couple if weeks so really helpful for me too. Thanks again Sue

[kaymack]

I had 4 cycles of FCR during 2013 and have been in remission since. I didn't have too many issues other than some nausea (if I slept through the time the next anti-nausea pill was due) and some constipation. I drank 3 litres of water a day, as I had been advised it would protect my kidneys. Good luck to you. I hope you get a long remission.

[Kingfisher20]

Having read the above responses I wasn’t sure whether to add my experience of FCR, but decided it may give a more balanced view. I completed 6 cycles of FCR last September. I had a fairly rough ride, especially in the first 2 cycles, mainly with issues of nausea, abdominal pain and low temperature. I was admitted to hospital twice in the first cycle and once in the second. By the third cycle it was decided to reduce the dose by 20% to see if I was more able to tolerate the chemo. I did manage to stay out of hospital, but recovery post each round of chemo tablets and IVs was slower, as your body becomes more battered.

I quickly discovered that the first 2 weeks of the 4 week cycle I was fit for nothing - struggling even to wash or make a drink in the first week. The 2nd half of each cycle was much better and able to get about ok and even managed a few hours at week on alternate days of the last week in the cycle.

If you live alone - plan ahead. Easy small meals / soup in the freezer. Hospital bag packed - just in case (you may not have the energy to deal with this if you are unwell and need admitting). Emergency contact- helpful neighbour or friend who can shop for you or make a drink. 'Distraction therapy' - someone who will spend a short time with you and talk about anything other than cancer and how awful you feel (and know when to leave).

I have had a good response to the FCR treatment. Be prepared post chemo that it can take several months to adjust- I still have fatigue and elements of 'chemo brain' 8months on. I have returned to work, but still very prone to infections- Hb low and remain neutropenia.

I really hope that you have a better experience than me. Above all be kind to yourself and remember that the majority of people haven’t got a clue what CLL is like!

[Ankakoza in reply to Kingfisher20]

Thank You ! It is better to know Than to fear of unknown

[Hidden]

Seems each experience is a bit different. I had six cycles (1 every 4 weeks) in 2012. Some nausea and discomfort for the first two or 3 but I continued to work. One surprise was the nurse that suggested Ativan for anxiety. I’m not an anxious person, high-stress military before working in underground mining, but it made quite a difference in my reactions.

Good luck, I had 5 great symptom-free years, now on Imbruvica which was not available to me in 2012.

[IRN83]

I had FCR about 9 years ago. 6 months of it. My experience was that as the months progressed my recovery time increased and I was very sick for days and then weeks. The Neulasta shots caused a great deal of bone pain. Unfortunately the FCR didn’t work, I then had 9 months of BR, then Ibruvica and am now on Venetoclax. Still struggling with the disease and side affects of the different medications. Good luck. I elected to get a port, that was the best decision I made!

[noeagaman in reply to IRN83]

I totally agree with the port. They still use mine for monthly IVIG's and blood draws. It makes things so much easier! I'm sorry to hear that FCR didn't work for you. It sounds like you have had just about every treatment option that has been out there over the years. Hopefully the Venetoclax is work well for you.

Chris