Starting treatment FCR on Monday, what should I expect for side effects?

[Musicguy]

In Canada saying no to chemo is only an option once you have received chemo and failed. Wondering if anyone has words of wisdom to get prepared for chemo, this coming Monday?

[Cllcanada Top Poster CURE Hero]

Hey Musicguy

FCR and maybe FR are the only options in Alberta first round as far as I'm aware. Bendamustine is now available in Saskatchewan for first timers as well.

I had FR for 6 rounds and RCHOP for 6 rounds in 2012 so I know the territory...

The difficulty some experience is usually with the first Rituxan infusion... it is slow and takes a long time, so be prepared. You also want to arrange for a drive home, the premeds can make you woozy... you shouldn't be driving.

Not certain if they use IV or oral fludarabine and cyclophosphomide in Alberta... if it is oral, you will get pills, if it is IV, those two take about an hour each...

Stay extremely well hydrated with water for 3-4 days after the first round. You need to flush these drugs out of your system...

Talk to the infusion nurses, they know more about infusion reactions than most doctors. I experienced rigors, about 6 hours after the first rituxan infusion... they lasted for about an hour... rather unpleasant chills and teeth chattering.

If you start to feel weird IN ANY WAY call the infusion nurse immediately.

Read all the literature they give you... its important.

The first round is generally the difficult one... have you been given allopurinol? Sometimes it is used, depends on your white blood cell count (WBC) and kidney function...

On the practical side...get to the clinic earlier than the appointment, so they can mix up a batch of rituxan. Take bottled water and snacks, reading material, music etc etc...

First infusion can run 3-5 hours, after that perhaps 2.5 to 3 hours...

All the best...you will do fine!

~chris

[MsLockYourPosts Passed Volunteer]

Music Guy - When my cousin started chemo I put together a collection of suggestions that I collected from various sources. I'm am just going to copy and paste it here. I left in the information about dealing with hair and make up, which pertain more to women, but you might want to add eyebrows and there may be women who would find them helpful. I don't know if the links will come through, but if they don't I will send them to anyone who wants them. I am a big advocate of recording things, and especially when starting chemo, I would record any directions from the infusion room nurses or doctors. The pre meds can do a number on your memory. Also be sure you know who to call if you have a reaction of any kind or develop a fever 24 /7. Another good resource for FCR is the blog DanS posted on CLLForum.com. While everyone is different, he covered a lot of the possible issues you might encounter and solutions he found helpful.

Chris gave you the really important advice. If you even feel a slight tickle in your throat tell your nurse! They will not be bothered - too many people try not to bother their nurse - and would rather control something right away than end up with a sick patient.

Many sail through their initial rounds of treatment and find the last couple a bit harder. As you get going let us know how you are doing!

Pat

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Sometimes the anti nausea drug you are given can actually make things worse, in which case changing drugs can make a huge difference. Most people suggest taking anti nausea meds before you are not feeling well rather than waiting and trying to control the nausea. You may get the new three day anti nausea med with your infusions.

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From a post:

NINE FOODS that relieve nausea are:

apple, crackers, ginger, water, nuts, chicken broth, Sports drinks, banana and sprig of mint.

Go here to read about it--everydayhealth.com/photogal...

"I know that gingerale and crackers or the sports drink work for me. Or mix your own with a small amount of orange juice, pinch of salt, baking soda, and a little sugar. Also since "nosalt" is almost pure potassium.......I have found that taking a small amount of that will settle my stomach." This was part of the above. I don't know what nosalt is.

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For a metallic taste or other unpleasant tastes while getting Chemo many find that sucking on lemon drops helps.

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From Christopher Dwyer - the best researcher I know - posted on one of the online groups. This is really important if one's neutrophils go below normal during treatment. Some doctors will want patients on a neutropenic diet from the beginning of chemo.

You should follow a neutropenic diet, including for about 6 months post treatment. It is about careful food handling and selection, as well as maintaining good nutrition.

Here are a few booklets... leukaemialymphomaresearch.o...

library.umc.edu/pe-db/neutr...

thisisaurl.com/wp-content/u...

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Ask about anti virals if your doctor hasn't said anything. Many people take them during treatment and some for the rest of their lives to prevent shingles. Others are warned to report any evidence of shingles and put on a mega dose if it comes up. That is my doctor's approach.

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Many find that several smaller meals rather than three a day work best during treatment. Some doctors will give you something for nausea in your IV as well as something to take at home. People say that they are advised to take their anti nausea meds. before experiencing any nausea for best results. Others recommend a very high fiber diet or fiber supplement going into and during treatment, as well. If you are experiencing nausea and your anti nausea meds aren't helping, let your doctor know right away. One friend found that the cause of his nausea was not the chemo, but the anti nausea med he was given. Changing to another one helped right away. Others have found that changing pre meds solves the problem.

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One friend's post:

Sounds corny, but fiber will keep things moving. I use Barleans high lignan fiber gel caps, start with two a day and work up to four or six, spaced out. Strangely enough, this also works for the opposite problem without becoming a two day cork ! Went all thru treatment with no issues on either count that this couldn't handle. And it's supposed to be good for you.

be well

Others find that Smooth Move Tea is very effective for constipation. It was definitely an issue for me with cytoxan. I wish I'd gotten this advice before my treatment.

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Your doctor will probably tell you to report any fever over 100.5 F immediately. Most doctors will not want you to take Tylenol or anything else for the fever, as they don't want the symptoms masked until they can figure out what is causing it. Ask what your doctor's procedure is if you have a fever other than during office hours.

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Don't eat your favorite foods during chemo. If they make you sick, you won't want to see them again.

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If mouth sores develop there is a mouthwash that people have called "magic mouthwash". I need to do a little research on exactly what it is. Others say that Popsicles help.

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I loved this video about head coverings and the other ones I found by the same person when I went to youtube. I think I need a buff for bad hair days. The idea of having one by the door in case of surprise visitors sounds like a good one. Something basic just to keep your head warm is important. I especially liked the youtube this woman did did on eye makeup.

How to wear a Buff

This woman also has some good videos on makeup.

Eyebrow Tutorial for Chemo Patients 1 - Step by Step

Eyebrow & Eye Shadow Tutorial for Chemo Patients 2

YouTube - Videos from this email

[Cllcanada Top Poster CURE Hero]

Great post Pat! Thanks

[Oleboyredw-uk]

I think you should anticipate side effects, however dont assume they will happen. So, i think the most 'feared' side effect is hair loss, because it reveals what you are going through and can get a very negative effect from others. With FCR i was told there is a low chance of this, and i never lost any.

Nausea and constipation were what the nurses warned me about. Again i never suffered either, although i did have medication for the former, which i took. I was give enough for every day on each cycle, however, i found that i stopped taking them a few days after the end of my F and C finished and i was OK.

In the earlier cycles (1 and 2) i found i napped a couple of times an afternoon for half an hour in the first week or so.

Make sure you have something to occupy you during the Retux, my first was six hours, even by cycle six at three hours (for me) it's a long time to sit without anything. I took a book and laptop each time, others had ipods, magazines, basically what works for you.

I hope things go well for you, rob

[jangreen]

Hi I found FRC + M the worst experience of my life. This should not frighten you as each of us are different but be prepared. First be as "fit" as you can because you need strength. When I was at my worst I got strength from my loved ones. Take advice when its offered and take all the help that is offered. Hope you sail through best wishes.

[Musicguy]

Thanks to everyone for your answers and good wishes, this helps me understand what is to come and helps me get prepared. Tomorrow is my first round, I hope it all goes well.

Keep well ,

Jim

[PaulaS Volunteer in reply to Musicguy]

Hi Musicguy Jim,

Just wondering how you are getting on with the FCR. When you feel up to it, it would be interesting to hear.

Paula

[MsLockYourPosts Passed Volunteer]

Jim - I forgot one suggestion that has worked for many for nausea, both chemo related and due to carsickness or sea sickness. There are little wrist bands called Sea Bands which work on the principle of accupressure. You can find them at most pharmacies in the US.

When I was teaching I had a student who had never been able to go on a field trip because he became so ill on the bus until his mother discovered Sea Bands. They really do work for many.

[MsLockYourPosts Passed Volunteer]

Chris - All ideas "borrowed" from people who know more about this than I do.

[splashsplash]

I'd like to second the wrist band suggestion - they worked brilliantly for me. They are available here in the UK from Boots the chemists and I kept mine on for the whole six months of FC. They work by pressing on the acupuncture point for all types of nausea and they must work, they are standard issue in the navy for sea sickness.

A nurse at my hospital told me that fresh pineapple (pureed presumably) is very effective when given to patients with mouth sores.

People's reactions to chemo seem as varied as they are, so dont feel you're being a wimp if your reactions are worse than the guy in the next bed, we are all different with different tolerance thresh holds.

[PaulaS Volunteer]

There are so many useful, practical hints in the above, that I hope they will be easy to find when people (like me), get to the stage of needing FCR, but have forgotten what was said above. Would it help to have a category or tag for "coping with side effects"?

[AussieNeil Partner Administrator in reply to PaulaS]

Hi PaulaS,

A good way to flag useful posts is to click on the Recommend button so they will stand out. The admins can then use this when deciding which posts to pin for quick access. We've also thought about creating some 'umbrella' posts in which we include links to useful posts and questions with good feedback. We'll also be reconsidering whether we should change and add to our categories. Tagging is unfortunately not working as we want and I've already discussed this with the HU Team and given them examples of how it is not working well.

Thanks for your feedback, much appreciated,

Neil

[PaulaS Volunteer in reply to AussieNeil]

Thanks Neil,

I have clicked the Recommend buttons as you suggested. I had sensed that the present tagging system wasn't really working. I suppose I could have copied, pasted and printed out the postings I think may be useful later. Good solid old hard copy has a lot to be said for it. But it might be good if a category specially for "dealing with side effects of treatments" was created, because a lot of us on Watch and Wait may be facing this in times to come.

I have an idea for another category.....How about people being invited to share things that have helped them in more emotional, psychological ways, during their CLL journey? Maybe people could share their favourite poems, music, photos, quotes, art, games to play, songs to sing, films to watch - anything that has helped lift people's spirits and might give ideas to help others do the same. And for those with mobility problems, share experiences of wheelchair/walking frame friendly places to visit.

Thanks for all you do for this site,

Paula

[PaulaS Volunteer in reply to AussieNeil]

To add something to my earlier reply - the whole area of side effects of treatment might be worth a category - what to expect (which was Musicguy's original question) as well as how to cope. Someone posted a few weeks ago (I think it was Canadian Chris), some stuff about how little information re side effects is given to users of highly toxic cancer drugs, compared with the reams of info that is given out with a packet of aspirins.

I suppose there's a balance in all this - if we knew all the possible awful side effects, we might be more fearful and start imagining we've got them even when we haven't. On the other hand, if some unexpected and weird thing happens, it would be helpful to know that it comes with the package, and there might be something specific way of dealing with it.

[Cllcanada Top Poster CURE Hero in reply to PaulaS]

Every drug has a 'drug label' that lists every side effect reported to the FDA in the U.S. It is up to the drug companies to keep these labels current, and the FDA does a good job of policing this, based on information submitted by doctors.

In CLL the problem comes in drug cocktails...like FCR. Each drug has a label, known side effects, but there is NOTHING being done on what happens when drugs are used in combinations like this!!

Clinical trials list many side effects for FCR, but which drug causes them... the drug manufacturers, just say, 'not my drug' must be your drug and finger pointing goes round and round in a circle...forever...

What is needed then is a 'super drug label' for these cocktails, used in cancers...where side effects can be

noted and monitored, by the FDA, or EU or somebody.

Anyone interested in reading a drug label...here is Rituxan...it lists everything.. but most adverse events are extremely rare...

accessdata.fda.gov/drugsatf...

[jibs60]

Hi Musicguy,

I'm just approaching my final two FCRs after a short break whilst awaiting results of a minimum residual test to see if I could stop early. As it turns out, I've had a complete response - no nodes, wbc down to normal (well, neutropenic, but not over 200 and climbing as it was prior to treatment), and spleen no longer palpable, but I'm not quite yet MRD negative, so I'm going to crack on with the final two. Everyone responds differently, but I can give you a few tips that may be useful from my vantage point of 4 rounds of FCR though...

I've had my ups and downs on FCR, the main issue for me being nausea. Hopefully you'll sail through it, but if you do have issues with sickness, you might find this thread useful healthunlocked.com/cllsuppo.......

Otherwise, I'd say get out and about and exercise as much as you can - at the very least, a gentle stroll each day is really helpful.

Eat well, even if you feel a bit sick - it seems to help. Get a neutropenic diet leaflet from your chemo nurse so you know which foods to avoid when your neutrophils inevitably dip and leave you vulnerable to infection leukaemialymphomaresearch.o.... DRINK LOADS (of water that is!) to flush through the drugs. Get your GP to prescribe you some laxatives to counteract the constipation from the anti-emetics

Stockpile some good comedy videos, or tune into Dave on your TV - laughter really helps your mood and keeps you on top of things.

To be honest, I personally did find that the process of having chemo and sitting on the ward for my infusion, as well as being admitted to an oncology ward for a few days for an adverse drug reaction made me feel more like a 'cancer patient' than I had before, so I had to work to re-adjust to that and not let it define me (ongoing work for all of us here I guess). Doing as much stuff as possible that you enjoy and that makes you feel really alive and engaged with the world during the coming months of chemo would be my top tip.

Finally - this community is an absolute godsend if you have any questions or just want to share your experiences ... good, bad or indifferent.

I'm sure you'll take it in your stride once you get into the swing of it - good luck, and keep us updated

Jules x

[bingcrosby]

Did you have hair loss