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Rituxan, Fludarabine and Cyclophosphamide (RFC) - Robert C

Topic Made On: May 28, 2008 01:51pm
Robert Cork

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I have been working towards this day for the last 3 months in that I started my first round of RFC (Rituxan, Fludarabine and Cyclophosphamide) today (28th May 08). It has been a Rollercoaster ride over the last 3 months for a number of reasons:

• It all started with my Haematologist retiring with just a months notice and the task of trying to find a suitable replacement.
• Losing weight at about 2kg per month.
• Excruciating stomach cramps for no apparent reason.
• CT Scan that revealed lesions on bones which could have been a transformation to something more aggressive.
• Rapidly falling red cell counts indicating a possible transformation.
• Bone marrow biopsy for lesions under CT.
• A lousy bout of Bronchitis and sinus infection over the last 3 weeks.

A week ago I started all of the pre medications:

• Pentamadine (inhalation in a hospital environment, to prevent PCP a form of pneumonia).
• Valaciclovir (250mg) twice a day (to prevent shingles).
• Allopurinol 300mg once a day (to prevent gout).

In 2002 when I received single agent Fludarabine I developed an allergic reaction to Aciclovir which I was taking prophylactically. This was of concern to me this time around as the risk of shingles or CMV reactivation with RFC is high. However, I am lucky that the Valaciclovir drug has not produced any adverse skin reactions.

Today I started the chemo: Fludarabine (20mg) and Cyclophosphamide (150mg) all being oral drugs. My first round of RFC is interesting in that it’s good for the patient! My Haematologist for the first round prescribes only 50% of the standard dosage of FRC, she does this so as the patient has a fighting chance of tolerating the first round without to many complications. Starting today, I had the additional nausea medications of: Metoclopramide 10mg 3 times a day and Ondansetron 8mg twice a day.

I will post to these pages as I go through this experience over the next 6 months.

Regards

Robert




Replied On: May 28, 2008 09:37pm
Eileen

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Well Robert at last you have started treatment. I think half the worry is the waiting to begin. Hope it all goes well and you don't have too much nausea.

Sounds like you are being well cared for.

Be thinking of you. Take Care.

Eileen.



Replied On: May 30, 2008 05:41pm
Gillian

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Hi Robert, just saying thank you for keeping us all posted on your treatment journey. Hope it all goes well and will be thinking about you.

Gillian



Replied On: Jun 01, 2008 12:08pm
ronnie

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Robert take care and best of luck with the treatnment.

Ronnie



Replied On: Jun 28, 2008 12:19pm
Robert Cork

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UPDATE OF ROUND ONE

With round one being at half dose (F&C) with NO Rituxan, the month was fairly uneventful. For the first 7 days of treatment (5 days of oral drugs) I felt a little muzzy and didn’t want to do a lot and also slept for a while of an afternoon. Overall the experience was uneventful. I am sure Round 2 will be another story when I have the ‘manly’ full strength dose.

My blood results at day 14 were good and I have already noticed a 2 or 3 cm reduction in the size of my spleen and my nodes are now down to about 1 cm.

HB= 10.3, Platelets = 91, Whites = 5.2, Neutrophils = 2.6

ROUND 2
The Rituximab infusion was the first part of the start of Round 2. Because I have demonstrated severe reactions in the past to Rituxan (this is now my 14 infusion of Rituxan over the last 5 years) the patient has developed his own protocol for the infusion, which the hospital is prepared to follow, but is not happy about the amount of nursing time it takes.

The Rituxan infusion protocol starts at 5ml per hour for the first 15 minutes and then increases by 5ml every 15 minutes up to a maximum dose of 60 ml/hour. So it takes over 2 hours to get to a half decent rate of just 60ml/hour, the whole infusion takes a total of 12 hours. Most other patient can receive the full Rituxan dose (500ml/720mg) in 4 hours.

I finished the infusion at 11.00pm and was totally drained and washed out, but the bright side is that I had no reactions, and that’s good for me. So an overnight stay in the NHS hotel was prescribed against my wishes.

So, now I have started the oral F&C and we wait till next week to get a look at the bloods to see how I am actually doing. I full expect that I will need some red cells to top up my declining HB.

Most on the events of round 2 later in the month.

Regards

Robert



Replied On: Aug 09, 2008 02:29pm
mandy j

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Hi Everyone, so glad I found this forum!I have lived with cll for 24 years[yes mine was the slow 1]But in november last year my count's started going awrey! Anyway I have to start treatment soon!!!! I have had 2 unit's of blood and am now on steroids! And suffering the side effects! Has anyone had the dreaded sores!! Well I have for 4 weeks, starting in my mouth and then my fingers and lastley and most painfully and infection, sick diahorea, and the most horrendous sores on my BUM! Spent most of 8 days on the bed, my husband looking after me and all I keep being told is it's a side effect!! Anyway I would also Like to thank Robert for this forum and hope everything go's well for you in getting your cll back into remission! Go to hospital on thursday to see doc! Mandy



Replied On: Aug 09, 2008 10:02pm
Eileen

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Hi Mandy

Welcome to the forum. I am sorry you have had such a rough time and hope you are feeling a little better now. Also make sure you write down all your questions and anxieties and talk them over at the hospital on Thursday.

I have taken steroids different doses for the last four years but haven't had the same side effects. Everyone reacts differently to drugs though. Also my chemo was cholorombicil very mild and not bad at all to take.

Please keep in touch and let us know how you get on. Take care and I will be thinking of you.

Eileen.



Replied On: Aug 15, 2008 12:00pm
Robert Cork

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Round 3 Update

So round 3 has gone well.

This time around I had the Rituxan split over 2 days (day 1 33% and day 2 66%) which went well and was let of a strain on me.

The nausea is my biggest complaint, the 5 days of the stomach being ‘upside down’ and just generally feeling unwell and being unable to function normally. But as soon as I hit day 7 all the problems go away and life continues at normal.

All my nodes are less than 1cm and the spleen is now just Tipable (you can just feel it under the rib cage).

My blood counts are remarkable and these were taken at day 14 which would be my lowest point:

HB = 10.3, Platelets = 132, Whites = 4.5, Neutrophils = 3.6

I should add that each month at day 10 to 15, I am receiving injections of GCSF which is certainly helping the neutrophils (last month they were at 1.0 for the same day).

I am pleased as to how the treatment is going.

Regards

Robert



Replied On: Aug 15, 2008 09:57pm
Eileen

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Pleased that you are coming through it Robert. Hope all the rest goes well for you.

Take Care

Eileen.



Replied On: Aug 16, 2008 05:18pm
mandy j

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Hi Robert, I start my treatment on thursday but have to go in monday for the day to have some immunegloben as my immunity is very low [hence the sore's]and also my spleen and stomach glands are swollen, results of the scan I had in december, it's all systems go from thursday, stiil have to just take it as it comes and get through the next 6 months or so! Still scarey and a bit daunting at the mo! How are you doing o.k. I hope. Will keep you informed, Mandy j



Replied On: Nov 01, 2008 11:21am
Robert Cork

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Round 4 and 5 Update

So my RFC treatment is still going very well (touch wood) as demonstrated by my latest blood results:

HB = 13.3, Platelets = 121, Whites = 8.3, Neutrophils = 7.0

The reason for the high neutrophil count is because I was on GCSF at the time.

One point of disappointment is that my bone marrow biopsy at the end of round 4 still showed a nodular pattern and 50% involvement. So it’s unlikely that I will get a MRD from this treatment. However the treatment is working, so it was decided to press on with the remaining rounds.

I must admit that I will be pleased when the final round of the F & C tablets is complete, this treatment would have been so much more comfortable if it wasn’t for the nausea. But I suppose that’s a small price to pay for 3 to 5 years remission.

Regards

Robert



Replied On: Dec 02, 2008 02:43pm
Robert Cork

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Round 6 Update

RFC round 6 completed!!! So today I feel that I have completed my RFC treatment, I am currently on day 13 and have just got back from the hospital following a routine blood test. My results were:

Whites 15.3, Platelets 134, HB 14.5 and Neutrophils 14.5. Yes my Neutrophils are actually 14.5, but that’s because of the GCSF that I have had over the last 3 days.

In summary the protocol was easy on me, but I did suffer with nausea on days 3 to 8 of the chemo tablets (FC). I am even more pleased that I completed the treatment with no infections that resulted in hospitalisation, which was going to happen according to my haematologist.

So now a waiting period of 2 or 3 months and then a full blood assessment to include, 4 colour flow, to determine the extend of the response and if to follow this treatment with 12 weeks of Campath.

Regards

Robert



Replied On: Jan 22, 2009 08:45pm
mandy j

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Hi Robert & all on cll forum. Have not wrote on here for a while, I am coming up to my 5th treatment of 6. I have been having rituxamab antibodies and the chemo tablets c & f, have had a pretty rough time most months being sick and very tired, and several colds and chest infections blood counts have been all over the place mainly platelets dropping to 40 and white almost neutropeanic again and red but avoided more blood transfusions as they gave me more injections I now have 10 after treatment instead of 5. Anyway after my 4th treatment I had a scan and good news is that the desease has gone from my nodes in groin and stomach and my spleen is almost back to normal size! Theres me thinking I had bruised my ribs with the coughing but my consultant said this is the spleen shrinking back. 2 more to go and hopefully get the remmision that I want, both me & my husband are now desperate to get away on holiday somewhere sunny and warm, as we put all our holiday plans on hold.
I still have alot of questions to ask my consultant but they are more when I finish my treatment and are probably not answerable> How long till I get remmision? How long could this be?
I shaved my hair off before christmas as it had gone really thin, so I now sport a no 2 crew cut and several hats and scarfs.
Anyway I do feel alot better now and hopefully will get my next 2 treatments over and done with and on the road to recovery, hope everyone is well, keep positive Mandy j



Replied On: Jan 23, 2009 09:39am
Robert Cork

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Mandy

Sorry to hear that you are having a rough time with RFC, you have certainly had all of the complications there are to have, but managed to escape the blood transfusions. I found rounds 5 and 6 the hardest from a mental point of view, I just wanting to get it over and done with. Now that I have finished, I do consider myself lucky in that I was not hospitalised for any major infections, which I was advised that I would be, and that my side effects, mainly nausea, were quite trivial.

Over the last week I have been constructing my CLL Time Line (a time chart of all of my treatments todate, what treatments I might have in the future, and the likely response rate that I could achieve) to review with my Haematologist in a few months time when we conduct a full review of the RFC treatment and resulting blood work. Given that I have good Prognostic Markers and that I received single agent Fludarabine back in 2002, I am hoping that I will receive 48 months from this treatment.

I wish you the best of luck with your 5 and 6 rounds.

Regards

Robert



Replied On: Jan 24, 2009 03:17pm
sylvie

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Robert, your timeline will be very interesting for me. I have not posted for a while but my CLL is back bigtime with AIHA. I have been taking Prednisolone since the beginning of December, but now am down to 10mg a day. As soon as I am off the steroids I am hoping to start RFC. My WBC is 115 (down from 169 in Dec), HGB is up to 10.5. Retics are down to 150 from 197 (still high). Prednisolone bought with it glucose problems (diabetes) but staying away from the biccy tin seems to be addressing this. I am very undecided about RFC as FC the first time worked well with good remission, but the second time after 2 cycles I was hospitalised with Septacaemia. I have the option of Campath again (which I took as my 3rd treatment) but I got 'Kennel Cough' and stopped at 11 weeks with Pneumonia. However, I had a good 2 years after Campath, coming out of remission slowly. I was pleased to read you are doing well.
Hi Eileen, while I have been on the steroids I have been thinking of you often. Take care and keep well

Sylvie



Replied On: Jan 24, 2009 10:48pm
Eileen

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Hi Sylvie Robert and everyone.
Sorry to hear about the AIHA Sylvie hope the steroids work. I still take 10mg a day and have the same problem with diabetes. When I take higher doses I usually have to take half a gliclizide tablet now. I hope you get the treatment sorted and some more remission soon.
My biggest problem this last year has been neutropenia which I hope is about sorted now. The sinus trouble is back again though and I feel as if I have a permanent cold.
I really hope you have a trouble free treatment time this cycle. You Take Care.
Hope Robert and Mandy and the others are feeling better and ready to start this new year.
Take Care All
Love Eileen. .



Replied On: Jan 25, 2009 10:35am
Robert Cork

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Sylvie

My CLL Time Line is just a simple graphic way of showing (i) the treatments that I have received and actual Time to Retreatment (ii) then to sit down with my Haematologist and plan my possible future treatments and likely overall survival. I am at that stage of my life where I need to plan for the future.

Like you I have the option of having Fludarabine for a third time, but I am not sure at this stage as to the likelihood of the RFC working effectively for a 3rd time. I did find some evidence to support this and have factored the time into the chart.

I have attached a copy of the document at the following link (excel document):

http://www.ukcllforum.org.uk/cll-time-line.xls

BTW, is there a direct link between the Septacaemia and Fludarabine in your particular circumstances?

Regards

Robert




Replied On: Jan 25, 2009 01:56pm
sylvie

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Robert, the timeline looks good. Is there anyway you can post a blank form as I can't clear the cells. I would like to try and fill in one myself.

I keep notes of everything since I was diagnosed and I started the FC (the second time) with first tx on 29/12/05 for 3 days. I was very sick and not well at all. Next course started 30/01/05 with continual 'sea-sickness'. Water infection, nose sores. Still unwell at 13/02 so I started Cipro and had urine cultures done. 27/02 WBC upto 14,900 from 9,000 which was a 50% increase in 2 weeks and PLT down to 78 from 93. 02/03 very sick, 08/03 admitted with high temperature and rigors, they were not sure why but on hospital admission form they wrote septacaemia so I have no idea if it was the Fludara. However, they did tell me they had been very worried about me. By 27/03 WBC was up to 40,000 and it was agreed FC was not going to work and I would need to recover before starting Campath. I also had cardiac symptoms (I had angioplasty in 1989 for Angina). I also switched from Pentamadine to Septrim as Pentamadine used to make me really nauseaous. I started Campath on 10/09. Dr Dearden (Royal Marsden) has suggested RFC for me but whether I do this or Campath, it is still a repeat treatment. My doctor and I have agreed we will start FC at 3/4 of the dose this time. Were you offered RFC +/- Luxillimub?
sylvie



Replied On: Jan 25, 2009 02:07pm
sylvie

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Hi Eileen,

I hope your neutropenia gets sorted soon. What a road we have travelled in the last couple of years!! My steroid dose goes down again tomorrow. I am doing 10mg one day and then 5mg the next, alternating. I see my doctor again on 2nd Feb. I am not taking any drugs but testing waterworks every couple of days. Are you using a blood monitor?
Keep warm and well.
cyberhugs, Sylvie



Replied On: Jan 25, 2009 10:21pm
Eileen

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Hi Sylvie

Yes I use a blood monitor. I usually manage to keep in the correct level at 10mg steroid or under. But I had a platelet drop and had to go up to 20 so did the blood sugar! Never mind it gets sorted. The neutropenia seems o k and last Monday I was given an eight week follow up so that is better. Be thinking of you on the 2nd Feb.

Take Care

Love EileenXX(Hugs).



Replied On: Jan 26, 2009 01:49pm
Robert Cork

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Sylvie

The best way is for you to clear the lines that I have created by using the PAINT BUCKET tool and the NO FILL option. See the attached image to see what these are and where they are located in Excel.

http://www.ukcllforum.org.uk/timelineusenofill.png

If you are still stuck let me know.

PS, yes I could of received RFC+L but decided against it for no real reasons other that RFC was enough.

Regards

Robert



Replied On: Jan 27, 2009 06:28pm
sylvie

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Thanks Robert, I tried it but couldn't get it to work. I think it might be easier if I tried my own from scratch. I did C&G Level 1 some years ago and 'should' know how to do it, but there has been quite a quantity of chemo since :-) It will keep me out of mischief. I kept a blood count spreadsheet at one time and might be able to adapt it. Watch this space!

Regards, Sylvie



Replied On: Jan 27, 2009 06:29pm
sylvie

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Eileen, an 8 week follow-up is great. Keep taking the tablets :-)

cyberhugs, Sylvie



Replied On: Jun 07, 2009 06:20pm
mandy j

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Hi Robert and everyone on cll forum. I am now in remission and have been for a while I only had 4 rounds of chemo as my blood counts have been all over the place1 Manly my platelets keep dropping and at 1 time I had a platelet infusion, count was 11. My counts keep going up and down my consultant says due to a rare reaction to a anti viral tablet I was on. Last week I had my monthly dose of immunogloben 5 bottles, and on the last bottle I got the platelet rash so a blood test was done and all my counts had dropped platelets were down to 30 from 73 2 weeks before!
all other counts were down, hgb 9 from 11 nutrophils 1.00 form 2.5, anyway I see the consultant on thursday and have a few questions on why this keeps happening espescailly cause I have felt very well for 8 weeks now. Can't travel out of country yet because of the swine flu!!
Hope everyone is well, oh Robert I have a new blood test on my blood form do you know what it is cd4/cd8 ratioI will ask my doc on thursday.
Mandy j



Replied On: Jun 08, 2009 10:54am
Robert Cork

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Mandy

Not something that I have ever heard of before. But I did find the following:

Ratio of T-LYMPHOCYTES that express the CD4 ANTIGEN to those that express the CD8 ANTIGEN. This value is commonly assessed in the diagnosis and staging of diseases affecting the IMMUNE SYSTEM.

Please let us know what you find out on Thursday.

Regards

Robert



Replied On: Jun 22, 2009 07:53pm
mandy j

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Hi Robert, yes you were right about the c4 c8 test it shows the immune markers on the white cells, and mine were a count of 140 should be at least 200 so immune system is still low! Have my next dose of sandoglobulin thursday, that gives immune system a boost, still get quite bad bruising, doc will not say how long remmission, I understand from some people on here that they don't seem to get long yourself included, I did have rituxamab, has that made a diffrence!! Anyway still keeping well although I still get quite tired! Mandy j



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