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RFC treatment, by Brenda - seabecalm

Topic Made On: Aug 19, 2010 03:48pm
Seabecalm

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Hi my name is Brenda, I'm 56, I was diagnoised with C-CLL last
October, I was taken to hospital via ambulance as I was in considerable
pain in my lower back, via a whole batch of blood tests my CLL was
diagnosed completely unrelated to my back pain. I was totally shocked
to go into hospital with a bad back and come out with leukemia.
My consultant only gives me three blood readings when I see him, I
know I have to ask for more, my hb, white cell and red cell, In October
my hb was 12, white 34, red 250, I was put on the wait and watch , and
told they did not expect to treat me for a number of years. I have had
regular blood tests, 6 weekly and the only real change in blood counts
is the white which has steadly risen to 45. However, my most obvious
symtom is in the swelling of under arm glands and my spleen. At times
my underarms are so painful I cannot sleep, and my spleen is not
painful but I am aware of the problem. A CT scan showed the swellings
and a cyst on my liver, I was advised not to worry about this.
I have had periods of night sweats - weight lose and lose of appetite,
I could do with loosing a bit of weight!
I recently have begun to get extremely tired, by the afternoon the
settee is calling me for a nap, and I have to obey.
On my last visit to the consultant he said he thought it was time to
treat the CLL to give me a better quality of life, the treatment is to
start on the 7th September FCR. the Rituximab intravenous for approx 6
hours the first treatment and then a second short dose the next day and
the tablets of Fludabine and cycloposphamide for 3 days - the cycle
will be every 28 days for approximately 6 months.
I am very nervous about starting the treatment, but I so want to be
able to not have the pain of swollen glands everyday all day, I want to
be able to stay up at night after 9pm and I want to be able to put the
CLL to the back of my mind for as long as possible. My husband died in
April 2006 he had cancer but was not diagnosed until it was too late, I
am still grieving for him but I have some very dear friends who I know
will be looking out for me. We have two children (young adults really,
21 and 16 who are very resiliant and as they are young have the ability
to get on with life!!
I will write again after the first course of treatment






Replied On: Sep 05, 2010 02:21pm
Seabecalm

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hi, I know I said I would write after, but my god I'm nervous, I want to get on with it, I'm prepareing like I'm going on holiday, stocking up on all the essentials, without the thrill of the holiday. I've read all the literature, know all the down sides so I'm hoping knowing the worst is the best!
I hope someone is reading this xx



Replied On: Sep 06, 2010 03:21pm
Domineys

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Hi Brenda, I know the waiting the first time or for a new treatment can be awful. Try to hold on to the fact that, even if you have side effects that are unpleasant, the medics can usually find something to help. I see that you have two children, so (like me) you will remember when they were born - the process (for me anyway) was difficult and painful but soon forgotten. Hopefully your treatment will be successful and you will look back and think the experience was worth it if it relieves your pain. When I had retuximab about 5 years ago, the nurse said she'd been told it was like having 40 cups of coffee - and I did find I was wakeful at night. Otherwise, I had no side effects, but it was in combination with drugs other than FC, as my diagnosis then was different. I'm now having FC without retuximab (too expensive). The fludarabine makes me a bit nauseous for a few days, which is not very nice - but I think of childbirth and know it will pass!!!! Hope this helps. Do try to keep positive - I try to find something positive about each day - a view from a window, an exchange of conversation, a glimpse of sunshine (not many here in the last few days) and so on. Good luck - will be thinking of you on Wednesday. Ann



Replied On: Sep 07, 2010 12:09pm
JAWS1

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Hi Brenda,
As I come to the end of my current course of F.C.R. which is most similar to your proposed regime ( 6 months of 28 day cycles etc ) I feel I can offer you reassurance and succour at this time. I feel safe in predicting you will feel the benefit of said treatment and although we all respond differently re side effects, you will I am sure, not regret your decision to go ahead with your treatment. Yes there will be times when you are down and your resolve will be tested, as mine was, but as I stand on the crest of a good period of prolonged remission ( my last and final 6Th cycle of F.C.R. is about to proceed )I am in no doubt as to the worthiness of this ground breaking treatment.
Best wishes and K.I.T. jaws .



Replied On: Sep 07, 2010 04:13pm
smreynard

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Hi Brenda,
Ray started his first course of F & C last week, the Rituximab will commence next month when they have got his wbc down as it is 150. He has not had hardly any side-effects with the F & C as he is taking anti-sickness pills as well and they seem to have worked. We realise that when combined with the Rituximab it may be a different story so we would be grateful to know how you get on with it? Good luck and best wishes. Susan & Ray Tompkins



Replied On: Sep 16, 2010 01:00pm
Seabecalm

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hi, update one week after first cycle,
Well I can't say it was easy, it wasn't the Rituximab started ok, but after about an hour and a half I reacted - pain in my chest and couldn't breath, so the drip was stopped and I had oxygen for a while, the hospital staff were fantastic! I eventually got the full dose but it took almost 8 hours, very unusual I was told, anyway they said the next infusion would also be slow because of the reaction, other than that no problems, except -
came home with a suitcase full of chemo drugs, started on wednesday morning, by the afternoon I reacted to the fludarabine and cyclophosphamide- dont know which was the culprit as took both tablet (20 in total)together for 3 days, got the lot down, I was so sick and such bad diarrhoea I had to get doctor out for the magic injections, which did help eventually, I I lost half a stone in 4 days!!
Went to hospital this tuesday for check up and saw my consultant, I had rung the hospital when I was ill for their help so they were aware that I had been unwell! because of my reaction my consultant has said that he would like me to stay in hospital next time for a day or two so that they can monitor my reaction to the chemo and treat more quickly if needed, I'm good with that, to have a nurse/doctor/anyone standing with a needle will be good for me!
the really good news is my blood count, I know its only the first cycle but my count was 50 before and now is a staggering 6.3 whoa what a result.My nodes are smaller, I am very tired, get short of breathe, all that but thats okay cos I know the drugs are working and I will get on top of this thing, and thats what we all want so - if I have to put up with some side effects so be it, I have a fantastic team at the hospital looking out for me.
Thank you everyone who has commented I really appreciate reading your comments and comparing notes, thank everyone xx



Replied On: Sep 17, 2010 07:52am
kestrel

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Hi,Brenda I read your comments on your first cycle,and realy felt for you.I do hope your futher cycles are less problematic.I too am shortly going to have to face treatment with a WBC 159 and a CTscan pending I know its coming soon.When I've been reading your experience it brings home just how real this is,because of the watch and wait that comes with this illness you hope treatment will never be needed.Then when I follow your case we all realise its only a matter of time! I do hope you feel better day by day I shall be looking foreward to your progress.Regards Lee



Replied On: Sep 17, 2010 11:40am
sassy1261

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Hi Brenda, you obviously had a rotten time but you are doing great honey, I am still in watch and wait but you were kind enough to reply to my post when I had a bug my system could not cope with. Fingers and toes crossed the next round goes better and at least you with have the doctors and nurses to hand. All the very best, Sandy x



Replied On: Sep 17, 2010 08:30pm
smreynard

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Thanks for sharing this Brenda. Ray went to the hospital last week following his first F & C treatment and his wbc count had gone down from 150 to 32! We were delighted with this. He is now starting the Rituximab with it next time on 29th of this month, he is aware he will probably feel much worse with this but it is encouraging that his count fell so dramatically. Best wishes for your next treatment. xx



Replied On: Sep 18, 2010 03:04pm
pastongriffin

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Hi Brenda, I found the next cycles much easier - I thought I was going mad the first time. My haemotologist said it was the effect of the sudden drop in wbc - I went from 50 to 2.5. I hope it gets easier for you too....what do you eat? I could manage ginger biscuits or marmite - most stuff tasted like rubbish!



Replied On: Sep 18, 2010 03:32pm
Seabecalm

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thank you everyone - the worst food is dairy! chicken noodles soup is good- the experience was not good but the result is excellant!! we can all be better - love to everyone xx good luck to all xx





Replied On: Oct 16, 2010 12:53pm
Seabecalm

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Hi, second treatment done. I would love to stay it was okay, but I cant I must be really unlucky, hope so anyway for other peoples sake.
Stayed in hospital for the Rituxmab, very slow infusion over 16 hours no problems-great, sent home the next day with usual tablets, unfortunately the sickness and diaorrhia started as last time, not quite so violent but persistent. I didnt manage to keep the drugs down so it was all a bit of a waste, - saw the consultant on Tuesday wbc down to 3.2 - started at 50, so thats good, obviously some of the chemo got in there to do its job! Some problems with low bloods so on regular blood tests, generally feeling very tired no appetite, nausea, but getting better.
Next treatment 2nd November, all drugs intravenous so will be at the hospital, still side effects expected but I wont be able to throw them up!! Consultant said it was not ususal for the drugs to affect my gut so much so intravenous will bypass that little event.
I hope Rays' treatment is going well, and of course everyone else who is experiencing the treatment and the "wait and watch"
Still got my hair, horray, theres always something to smile about, thanks to everyone, Brenda



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