About to start FCR

[Kenn123]

I'm about to start FCR after almost 5 years of watch and wait. Anyone been through it? Any advice?

[BellaBee10]

Hi Ken,

I'll have my 5th round of FCR on Monday. Before I started, I searched FCR and there are some brilliant posts/diaries on here.

I think every round is different as is every person. We're all told to drink loads of water and you're just about to be I think Good advice.

Wishing you all the best. You'll get loads of support from the lovely people on here.

Nic

[AmericanRonin]

Bring a laptop with lots of movies to watch! Hopefully you'll have wi-fi, too. Better yet if you can sleep through all the boredom.

[Kenn123]

Thanks for that. Did you lose your hair? One consultant is saying I will, the other says I won't.

[BellaBee10 in reply to Kenn123]

It's thinned a bit but still have it.

[AmericanRonin in reply to Kenn123]

I think I was lucky. I didn't lose hair, I never felt nauseous, and I don't think I felt fatigued. I responded well, with a couple of glitches, but I had to do it all over again three years later. (And I'm taking Imbruvica now.) Everyone's mileage varies. Good luck to you!

[BCTexas in reply to AmericanRonin]

How is Imbruvica working out for you? I may have to take that when it's time for treatment. Any problems?

[RJR1 in reply to BCTexas]

Saw your " how is Imbruvica working " question. I was diagnosed 1/ 2015. Red flag was growing lymph nodes. Watch and wait until May /2016 when Scan showed they had grown by 50% since scan one year earlier. The nodes under chin and by cheekbones were like golf balls. I looked like the Michelin man. Blood work had been stable, not good not bad.

Started Imbruvica July 1, 2016. No side effects of consequence. Some minor diahrea, lymph nodes began shrinking in 3 days. At oncologist last week Dr said they are essentially normal size.

Thing about Imbruvica is no one seems to know how long you'll be on it. 18 months is often mentioned. It's just so new.

The other issue is cost...$290 per day for the 3 pill dosage. Insurance covering most. Rec'd grant to help with remaining cost.

[BCTexas in reply to RJR1]

Glad to hear your doing well. I know everyone reacts differently..I'm just hoping I do well when it's time. Thanks for the response and I wish you well.

[AmericanRonin in reply to BCTexas]

I guess I am more or less a typical Imbruvica user. I'm 3.5 months in. My two initial shocks were: the price (100K/year!) and the duration of how long you're supposed to take it ("forever"). Otherwise, most enlarged lymphs nodes returned to normal in a couple of weeks, though a couple others are stubborn and linger on. I had some joint pain in my knees, but that has mostly subsided. My WBC has predictably gone up, up, up....perhaps starting to plateau now, but I won't know until hindsight takes over, and then it should go down, down, down, to normal eventually. And hopefully those remaining stubborn lymph nodes will go down too. Maybe I feel some fatigue sometimes. It's hard to say as there is nothing to judge it against. Good luck!

[BCTexas in reply to AmericanRonin]

Thanks for your response sounds like you are handling it well. I hope I handle it well when the time comes..

[Bethan49 in reply to Kenn123]

Hair intact..A little thinner but fine! If you dye your hair. .Do it before starting as you're not meant to once chemo is underway x

[seoul]

Yes, I have had 6 cycles of fcr from 10/2013 to 4/2014. All went smoothly, i didnt experienced any mayor problems. Two times during the treatment, I had to wait for up to two weeks, as my Leucocyths or platelets came down sharply, but it recovered always. Prof said, it is a good sign, when all comes down sharply. Two times i was given an injection "granocyte" to boost up the leocos within the bone marrow. I injected myself easily.

After tretment in 4/2014 I was MRD-! Up to now, I had perfect blood counts, better than ever before, and I feel perfectly well. Doing much sport now and walking outside as much as i can, as it seems to have an impact on health. Also I check my Vitamin D3 level and was shocked in end 2014 to have only 15!! I got pills "dekristol", supplemented and check to be on 50 ever since. d3 is associated with CLL , as you can google.

All the best to you, take care and take it easy. May be it will be easier than you thing.

Seoul from Getmany

[seoul]

I didn't lose my hair or had problems with getting the infusion. At first you should drink "tons" of water, as you Cells washing out quickly.

[Bethan49]

Just want to wish you all the best. Go beat it! Just about to go into round 4.. As @Bellabee said ..everyone and every round is different. Saw a huge effect on lymph nodes after round 1. My mantra is "no pain, no gain!" .. You can have it too! A few days piste chemo feel wiped out BUT then feel perfectly normAl. Keep positive... laugh. .. and use it to get everyone running around after you!

Seriously. .. thinking of you x

[Kenn123]

Thanks so much for all your tips. Like ur mantra Bethan49. I just might adopt it.

[Rafe]

Firstly, best wishes during your treatment. First cycle can be a little slow, Rituxan can cause some reactions, generally they are handled quickly with some benedryl. The premeds on day 1 can make you tired - and the steroids on the other days can keep you up. My hair thinned a bit, no nausea. The first day of the cycle I would stay home from work. They are long days, and I'd be tired. day two and three of the cycle - I'd go back to work after treatment. So stay hydrated, bring distractions. I hope this puts you into remission.

[Kenn123 in reply to Rafe]

Thank you for that Rafe. Am starting Wednesday.

[Fran57]

Hi. Firstly, good luck; secondly don't worry!

I'm talking not as a patient, but my husband had FCR May- Oct last year.

You'll be given lots of tips and will be well looked after at the hospital.

What we found overwhelming for the first month was the medication to be taken at home..... The best thing I did was to make a chart for the fridge, one month at a time (because it can change slightly) and record what you have to take and when and any reactions. The hospital found it incredibly helpful too, when my husband had to go to the Cancer ward outpatients a couple of times. Have a thermometer handy and take anti sickness pills before you start to feel sick- the hospital will tell you that.

He was very sick / nauseous for the first 3 days each month, but the rest of the month absolutely fine- it is very "doable"!

No hair loss at all, although he was incredibly itchy throughout, some days worse than others!

All in all, I'm sure you'll be fine, but do ask if you think of anything else - everyone here is fantastically supportive!

The phrase you'll hear a lot.... everyone is different with CLL!

Good luck!

Fran & Paul ☺️

[CClaver27]

I went through FCR last year from April-October 2015. Numbers are all good now and a bone marrow biopsy in April 2016 shows CR and no trace of bad B cells. Hair did thin out but not significant hair loss at all and it's gotten thicker since. Going through the actual chemo sessions was not all bad and the staff of nurses and others was great. But depending on your overall health, age, and many other factors, the week or two following was hardly a piece of cake especially rounds 4,5,and 6. But your body recovers quickly if you eat right, get some sleep (my biggest issue without taking some sort of sleeping aid like Ambien or others), lots of fluids and exercise. The last one is really important but for me the first week after each treatment cycle was a catch 22. Exercise helped but I felt so crappie I did not want to move off the couch. That said, I rarely missed a day of work and largely kept my illness unknown to most of my colleagues. Good luck to you and you'll be fine.

[Kenn123 in reply to CClaver27]

Thanks for that. We are all brave souls aren't we.

[Kenn123 in reply to CClaver27]

Thanks for the advice. Rereading it now as I am about to start.

[CClaver27 in reply to Kenn123]

Good luck and stay positive.

[AM75]

I am just around the corner from having to start treatment with FCR... Thank you for posting this as it brings some reassurance.

Best of luck to you and please keep posting about your progress... Many thanks

[Elremsetay]

I think just about everything has been said. I got through first two cycles easily. Third and fourth more difficult. My hemoglobin levels affected me the most - couldn't keep up usual level of activities (had 3 rbc transfusions - they help). Now my platelets are very low - if they go any lower I'll have transfusion of platelets - no real symptoms here. Hair has thinned but only noticeable to me! I have not experienced nausea - but have taken recommended preventative measures following infusions. I drink 2L of water every day plus several cups of tea. I also have started drinking a glass of Metamucil each day as constipation seems to be another side effect for me. Also started taking vitamin D and Ca supplements as I have stayed out of sun all summer. Ca for my bones as counts have been on low side.

I have also been tracking blood counts using software downloaded from this site. Knowledge of blood counts a double edged sword. You can see clearly from the graphs how treatment affects blood cells but on the other hand when they get low I find myself worrying - sometimes ignorance may be bliss!

Good luck, I hope you sail through!

Liz USA.