Chemo: Hi. I was diagnosed with CLL... - CLL Support Assoc...

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Chemo

Lapo
Lapo
17 Replies

Hi.

I was diagnosed with CLL 3 years ago and will be undergoing chemo treatment soon.

What can you tell me about likely side effects?

I am still working freelance and wondering to what extent the Chemo will affect my ability to work.

Thanks for your responses.

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Oleboyredw-uk

Hi Lapo,

I think you will need to be a bit more Precise about which Chemo you'll be having. I had FCR in second half 2012. No significant side effects for me but it waries by person. Only effect I really remembered was feeling tired for a few days each month around the chemo days, first six of each 28 day cycle for me.

Other forms and combinations exist and will have different effects on different people.

Rob

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Lapo
Lapo
in reply to Oleboyredw-uk

Thanks, Rob.

It will be FCR but I will be told details later this month, as there is a chance I will be part of a trial for some other combo of drugs.

It sounds like, with some luck, one could keep working apart from the few days of tiredness.

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Oleboyredw-uk
Oleboyredw-uk
in reply to Lapo

FCR in UK involves Retuximab given on a visit to the hospital. That takes a day. You get the party bag of FC and all the support drugs to take home and take.

A word of caution, the Cyclophosphamide tablets that I had were like tiny white smarties, but really tiny. You get the F and C tablets based on your size or weight, cant remember the exact calculation, but I ended up with five of one and six of the other per day. With ten thumbs it was a fiddle. Just make sure you dont drop any.

Some work right through, my job was quite stressful with alot of travel but my employer was understanding and gave me as much time off as I wanted.

I was advised that the first two months set the scene for what to expect from the rest so I'd suggest you take the first cycles with caution (better that overcommiting in my opinion.

Rob

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keepfit123

Did you have an MRD check after finishing treatment ,Rob. I am guessing you were treated at the Christie Hospital and I just wondered if it was standard practice there.

Cheers,

keepfit 123

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Oleboyredw-uk

My check was done at end of tratment plus three months, that is my last cycle finished at about 24th Dec 2012(yay!). Tests were done late March. i had blood tests, bone marrow and CAT scan. Now, for me the CAT was really important as I had a large mass (we measured this on the scan I had prior to treatment and iw was a scary size) identified just below my diaphragm so it was really important to see what had happened to it (before you ask, no trace showed up on the scan).

Made remission but didnt quite make MRD negative. So, no trace found in periphery blood.

Having chased one Cyclophosphamide tablet around a wood floor I agree with Chris, a bowl is a good idea, blister packs with such small tablets are a pain. I also agree with him on anticipation being worse than the reality.

Take reading matter, ipad, laptop, mp3 player, kindle or whatever, however if you take music remember earphones. One day I was next to a lady who seemed to think everyone needed to hear her dire selection of music.

Without wishing to cause a big debate the Bone Marrow test was also a non-event for me, I'd assumed some kind of drill not a huge push.

I did go to The Christie, you are correct.

Rob

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keepfit123

As you were finishing treatment in Dec. 2012 I was just starting. I had 2 tablets of Fludarabine and 3 tablets of cycophosphamide (half dose) plus the usual Rituximab.

I did not have any bone marrow check after treatment just the blood check and CT scan. I achieved complete remission based on this and a repeat FISH test which did not detect any cytogenetic abnormalities. Before treatment the blood test showed my CLL was 84% trisomy 12.

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SeymourB
SeymourB
in reply to keepfit123

I find that very encouraging. I'm trisomy 12, too. Barely ZAP-70 positive, mutated heavy chains, and onlt 12.5% CD38. But I am so tired. I think it's the infections that have me low.

At what stage were you originally diagnosed?

Would you say that you feel better now than when you were diagnosed?

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keepfit123
keepfit123
in reply to SeymourB

I have never had the ZAP 70 or the IGHV tests but was Low CD38 at Stage A in 2005 at diagnosis when I was found to have a WBC of 17. I was treated in late 2012 and did have a few incidents but o.k now. I can't say I have suffered fatigue.

I felt good at diagnosis and the same now apart from the odd cold.

Cheers,

Keepfit 123

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Lapo

This is really useful insight, Rob.

Many thanks.

You just don't get the detail and first hand knowledge from consultants....

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Cllcanada
CllcanadaTop Poster CURE Hero

I had FR a few years ago, and after the first round, had no problems at all, I went to the hospital by bus and often walked most of the way home after the infusion...

The problem is you won't know until you are treated. I know people who have had FCR with absolutely no problems, they worked right through treatment except for the infusion day, and others who had to reduce hours and a few who took a few months off work. It is a factor of your health and comorbidity situation...

If you can, get infused on Friday afternoons, that gives you the weekend to recover before Monday...

However, you should plan with your employer for reduced time etc. and hope for the best.

Open your pill packets over a big mixing bowl.... I lost 4 fludara tablets, the size of a big grain of rice, coloured brown... and spent an hour crawling around on the kitchen floor looking for them.... ;-)

I think many people have problems due to not being properly hyrdated... drink water continuously... all day... B cells are being flushed through your kidneys and you need water, lots of water...

The anxiety of treatment is FAR WORSE than the actual event... take your lunch, water, a good book, iPad etc... a friend should drive you home after rituxan, you will be woozy..

All the best... ~chris

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fieldmeadow

Your question has been answered well by the above members. My symptoms from FCR were nausea from day 3 to 10, fatigue and extremely low neutrophil counts which caused some disruption to the regular cycle of 4-weekly treatments.

You sound younger so may not struggle as much, but would be interesting to know how physical your freelance work is as that may have a bearing on what you can and can't do.

Hope all goes well. Keep in touch with the community if you feel able. We'd like to know how your journey goes.

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Lapo
Lapo
in reply to fieldmeadow

Thanks for your post.

I am 51 and an Architect, so we are not talking about physical work but one that requires a great deal of concentration.

I have had to resign from paid employment as a Director as a result of my employer's total lack of support, so this is a new situation for me.

Fingers crossed.

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Jomary8505

Hi, Sorry to hear about the lack of support from your employer. I'm not sure where you are located but I recently started FCR in the US. I get the Rituxin on day 1 (had mild reaction-chills, fever after 1st infusion that was controlled with Tylenol), then on days 2,3, and 4 I get the Fludara and Cytoxin. Everything is given IV in an outpatient cancer center. I get pre-meds which are steroids and Zofran for nausea with the addition of Tylenol and Benadryl on day 1 with the Rituxin. The first day, I get a little tired with the Benadryl but the rest of the days I have energy due to the steroids. I get an injection of Neulasta on day 5 to stimulate white blood cell production and I have not had any problems with the injection although some complain of bone pain. I am usually tired the following week due to he drop in my blood counts including my RBC, HGB, HCT but it is manageable and I have continued to work with a few half days thrown in. I was quite apprehensive and felt slightly more ill with the first treatment but I think my nerves played into how I felt. I was also given Zofran to take at home especially for the first few days after treatment as the cytoxin can cause nausea for a few days. I had a slight loss of appetite but that was it. It is so different for each of us and I have been extremely fortunate with my response. I wish you the same luck! Joan

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Lapo

Thanks, Joan.

This is encouraging, although I already feel very fatigued and without appetite.

I live in the UK but I expect to be treated as an outpatient as you have been.

Let's hope for the best.

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Oleboyredw-uk

Glancing though the posts I remembered a couple of other things.

1: told if I was a red wine drinker to lay off it. it tastes dreadful no matter how good it is due to the chemo drugs. I switched to an occassional white, however, iut of curiosity I tried a sip of red. Yuk, luckily it was not my favourite, maintained this regime until after my three month checkup.

2: hospital gave me what I considered to be good guidance on foods for duration of chemo. No red wine, shellfish (Inc prawns) or blue cheese were on the nogo list for me and all meat had to be at least medium.

3: you are closely monitored during the Retuximab infusion for any side effects. Allow a whole day as they start you off very slowly and gradually increase the flow rate.

4: the first visit from the hospital pharmacist was a bit of a shock, I'd looked at the list of take home drugs but it didnt register, it was a carrier bag full! We called it my party bag, of course 90%+ is packaging but it looked a lot! Regarding this, I did myself a simple spreadsheet with dates and what to take when each day. Printed it and used a highlighter to mark off each block as done, to aviod missing and double taking.

5: they gave me an anti-nausea drug, forget the name and told me to take it for first ten days of each cycle. On second or third cycle the consultant and nurses suggested I could reduce it as I didnt seem to suffer nausea so for the rest of the time I only took it for one more day than the F and C. That worked for me.

Rob

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Ruhi9

Hi Lapo,

I managed to work through my FCR treatment, but only because I timed it that way. I teach piano from 8am - 2pm on Thursdays and Fridays at a local primary school, so I would start my 5 days of FCR on Wednesdays including the Rituximab on the Wednesday - it was given along with a steroid, which apparently helped ward off any nausea for a couple of days.

By Friday afternoon the nausea would kick in, and I’d get myself home and was then basically fit for nothing until the following Wednesday. Unfortunately I really suffered with nausea in spite of all manner of anti-emetics being prescribed. I’d lose up to half a stone in weight over those five days each cycle. It was only on my 5th and final cycle when I was fitted with an anti-emetic syringe driver that I got through the week without losing any weight.

Good luck with your treatment - from what others have posted it sounds like anything goes! Just take each day as it comes and hopefully all will be well.

Ruhi9

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Lapo
Lapo
in reply to Ruhi9

Very good advice. Every days as it comes; adjusting work rhythms to biorhythms.

Thank you all for sharing the insights of your experiences.

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