CLL Support Association
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Doc is recommending treatment

I've reached a point where I need FCR. I am SCARED, especially about side effects and the 50/50 chance of losing my hair. PLEASE share your experiences with me. Does it stay in remission once it gets there?

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Hi Robertaann,

I can understand your fears but can't help experientially with what to expect at the moment as I'm pre-treated. I'm sure they'll be others along who can give you guidance and reassurance about FCR. People do seem to vary massively in their experience and response including the length of remission they achieve.

I see from your previous posts that you were only dx about 8 months ago. What has happened to propel you into treatment at this stage because I know your levels were high but you seemed to be doing and feeling well with few other symptoms. Did you speak to a CLL specialist and what are the reasons for the fairly rapid treatment? I'm not by any means doubting the medical rationale but I think people need to be convinced themselves on timing and be psychologically prepared. Do you feel you've had enough information and preparation from your medical team Robertaanne?

Newdawn

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Thank you for responding. It seems my #s are going up quickly and have now reached over 300,000. I feel as prepared as I'm going to be for this nightmare.

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Hi Robertaann52:

I am sorry that your WBC abruptly increase. Have you had any supplements such as green tea extracts? And did you stop taking them? If you stop taking green tea extract (EGCG) after continue to take for a while, a strong rebound often occur (WBC abruptly increase rather than before begin to take it). It is my experience, and also reported in a scientific paper of Mayo Clinic phase II trial on EGCG.

Miee

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Thank you for responding. It seems my #s are going up quickly and have now reached over 300,000. I feel as prepared as I'm going to be for this nightmare.

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Robertaann, I have known many CLL patients treated with FCR, and there might be some hair thinning, but not total hair loss... the hair will return after treatment by the way... it is temporary. I was treated with RCHOP for a lymphoma, and lost all my hair, but it has returned thicker and better than before...

Side effects are very variable, but after the first rituxan infusion which needs to be done slowly, things should be fine... you will be given premeds and remember the oncology nurses have done these treatments thousands of times... it is new to you, but pretty routine for them... stay extremely well hyrdated with water throughout your treatment, it is important... day after day...

Have you had a CTscan recently? Like Newdawn, I'm wondering about a rapid move to treatment. I think it would be wise to seek a second opinion at this point, from a doctor well versed in CLL. High lymphocyte counts by themselves are not a reason to treat... perhaps your other blood counts are dropping?

Remissions vary, but usually they run years on FCR, some people have remissions over 10 years...

~chris

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Hi Robertaann,

As Chris has pointed out hair loss with FCR is extremely unlikely. I had FCR 3 years ago and did not even suffer with hair thinning. My CLL nurse did advise to use a mild shampoo or even baby shampoo whilst under FCR treatment, nothing harsh. Apparently this helps keep the hair in good condition with less risk of thinning. As for other side effects that really is hard to predict as everyone seems to handle the treatments differently. I personally suffered violent rigours (shaking) after the first infusion of Rituximab (the "R" in FCR) but it quickly settled and further treatments were trouble free. Try not to worry too much about this treatment, it has a good reputation for success and many people have had good remissions. I myself had mine over three years ago now and still doing ok on watch and re-wait. You may have already been told this but whilst on treatment try and avoid places and situations where you might be susceptible of picking up infection, crowded trains, aeroplanes, theatres etc. Your immune system will likely be weakened by the FCR treatment, best give it all the help you can.

Good luck

Kevin - Essex, UK

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Your mind is not "foggy" at all! Your reply really helped. I dearly appreciate you taking the time.

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Hi I had six rounds of FCR in 2007 and another five in 2012. No noticeable hair loss to me. Perhaps under the armpits! My only advice would be to take the antisickness drugs. Don't get to a stage where you vomit if you can use the antisickness drugs and advice from the nurses. Some people sail through FCR. I didn't find it easy, but I can probably guarantee at least half the time of each month, you will feel quite good. Good luck. Its the gold standard treatment for CLL in the UK. Good stuff.

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Thank you so much!

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Hi Robertann,

I was diagnosed in June 2012 and started FCR in July 2012, so straight in pretty much. I'd always had longish hair - on my collar (growing up as a teenager in the 70's). Hair loss was one of my original questions for my consultant. I had some weird idea at the time that I'd visit the hairdresser and make a gradual change so as not to alarm people and embarrass me.

My consultant's response was clear and with a small amount of humour, which works for me. Something like,..... It is very unlikely in my experience that FCR will result in loss, however if you really want to loose your hair I could find something that is a certainty. (You needed to have been there to feel the stress ease in the room.)

Anyway, i grew my hair long, it was not cut from June 2012 until last Saturday when, on a whim I had it cut short.

As yo you remission question, early days yet for me, but at my December 2014 checkup my consultant was very pleased with my overall state.

Feel free to ask more specifics, I like everyone here will respond as best I can.

Rob, (Derbyshire, UK)

(18:45 edited to correct some of my trypos)

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hello Robertaann please dont be scared of this excellent treatment. My FCR was over 4 years ago and managed fairly well ,always taking the anti sickness drugs etc offered. i used to come home with a large carrier bag full !

Between treatments i even went for a pint of Guiness in the pub,at a quiet time of day though.good advice to avoid crowds. Unfortunately some weeks after completed treatment i developed a fungal chest infection which required hospital stay

but here i am still battling on fighting regular cold infections and having a good quality of life

i see my Consultant regularly and just have some enlarged lymphnodes in neck and chest which she is monitoring

Cheers all the best Bob

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Wish I could join you for that pint of Guiness! Thank you for taking the time.

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Hi Robertaann, I completed FCR last year and the pre-worry is sometimes worse than the actual treatment! The only hair loss you may experience is slightly more strands when you step under the shower. Nothing more. Not even my hairdresser noticed my very, very slight thinning when I went for my usual 2 monthly trim.

Side effects can vary. Any side affects during the 'R' infusion are quickly seen to by the nurses - just make sure you inform them as soon as you notice anything unusual eg. flu-like symptoms, chest tightness. With the 'F' and 'C' tablets I experienced some nausea from day 3 or 4 to about day 10 and fatigue (but others do not).

Also, your blood counts will probably fall dramatically following the first round of FCR. If your neuts fall too much there may be a delay before commencing the second round of FCR. Don't worry if this happens. It's not detrimental to your overall treatment.

Do take a bottle of water with you and some magazines as the 'R' infusion can take a few hours. A notepad and pen are useful too. You will be given a bag of pills to go home with following the 'R' infusion. Don't be alarmed - they all have a purpose.

Finally, not everyone needs 6 full cycles of RCR. Your consultant (and you) will decided, depending on test results that are done following each cycle (and for your interest, I am now enjoying a good remission and feel well).

All the very best.

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Thank you.

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Roberatann - Are you in the US? If so all three drugs are administered by IV normally. If you aren't it seems that most people get the FC in pill form and only the Rituxan is an IV infusion. I just read some funny, but useful comments about dealing with the tiny F pills and the importance of opening them over a large bowl so you don't end up on the floor trying to find them. If you go to CLLforum.com one member there (do a member search for DanS) did a great blog about his experience going through treatment which includes lots of useful tips on dealing with potential side effects. The advice to tell your nurses immediately of you feel anything is even slightly off, no matter how insignificant it seems to you, is extremely important, as was mentioned above. Nurses can usually ward off a major reaction if they have a heads up right away. That being said, I had no problem when I was treated with rituxan.

Lots of water to flush out cells is important. You should also ask what your doctor recommends to ward off issues with constipation. They can range from an inconvenience to something serious if you don't stay on top of things. Staying ahead of any potential nausea - take the anti nausea pills before you feel you need them, and tell your doctor if they aren't working as there are alternatives - can also make your experience less stressful.

hoping everything goes well! Not every day will be wonderful, but many sail through treatment with minimal side effects.

Pat

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I am in the USA...thank you for the good advice!

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My husband had six cycles of FCR. He did not lose his hair. He needed the antinausea drugs, and the dull sickly feeling got worse with each cycle. Also some constipation managed with laxatives. He had severe neutropenia after completing the last cycle and was dangerously ill, a week in the hospital and they sent for his son, stationed with the military in the mideast, fearing the worst.

Bounced back from that, has had two bouts of pneumonia but we are blessed with a complete response and hope for a long remission.

I hope you will be as fortunate with good outcomes and escape any ill effects. Be careful of germs and use the prophylaxis meds they give you.

I have done much second-guessing of his oncologist but after lots of reading here I know the FCR was the MOST effective treatment.

Good luck.

D.

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Hi, Have you heard of the FLAIR TRIAL, or had it suggested to you? There would be a 50/50 chance of getting the non-chemo drug Ibrutinib taken with 6, 4 weekly rounds of Retuximab or the normal FCR. My husband is 4 mths into trial (he got the Ibrutinib arm) so far, no apparent side effects, no sickness, fatigue etc. Maybe just the luck of the draw but he can't believe how well he feels. Plays golf at least twice a week, more if I would let him!! Hope this might be of interest to you. We live in Bournemouth and the trial was suggested with great enthusiasm by his Consultant.

Good luck to you, Ann

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I'm in the USA...thank you for the suggestion, hope your hubby continues to feel good!

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Robertaann I'm due to start FCR next week!

Been waiting for 12 months on the cusp of treatment but finally decided alongside my heamotologist that so many things in my life have been put on hold that time is right to give this disease a kick up the backside!

Even though this was my decision I too have felt scared of the unknown adventure we are about to embark upon. However, if you look on this site many have said the actual event is not as bad as the preamble! Take it in your stride girl! Join me in our fight against letting this disease control our lives! Take control! Don't let it beat you!

Keep in touch we can go through this together and with all these wonderful people on this site supporting us we can come through the other end with heads held high and free of this damn disease!

My thoughts are with you good luck on our journey!

Geoff

West Midlands

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I wish you only the BEST outcome! I appreciate your encouragement!!

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Robertaann - I tend to agree with Chris and New Dawn about getting a second opinion before starting treatment. If you are in the US there are several newer treatments available, either recently FDA approved or in trials that are not as available in other countries. Dr. Jeff Sharman has a list of CLL specialists who he recommends in his blog, as well as good information about these newer treatments. cll-nhl.com There are also some good threads about some of them on CLL Forum, posted by people going through them. It could be that FCR would still be the recommended treatment, but I would want the peace of mind of knowing that someone knowledgeable about all of the options agreed with the choice. I made the mistake of letting my first oncologist start me in treatment without consulting with someone who really knew the ins and outs of CLL, and it was a mistake.

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Thank you : )

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I can honestly say that I sailed through FCR last summer, I had 4 cycles June to Sept. I was very scared on my first day but I didn`t experience any after effects . I found that I still tired very quickly but no worse than before. Now, 4 months later I feel quite well but will be glad of the follow up checks! Hope all goes well for you. Lindley.

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Thank you SO MUCH!!!

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